Carnival of MS Bloggers

Carnival of MS Bloggers #106

2012-01-19T22:49:00.000-05:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Gratitude, Anger, Nostalgia, Freedom, Balance

A Small Stone: Jan 13, 2012

by Laura of Shine the Divine

.שַׁלָ נְעָלֶיך, מֵעַל רַגְלֶיך--כִּי הַמָּקוֹם אֲשֶׁר אַתָּה עוֹמֵד עָלָי, ואַדְמַת קֹדֶש-הוּא

Take off your shoes from your feet, the place your are standing upon is holy.

(Exodus 3:5)

I look down at my two seemingly ordinary feet, veined with time standing firmly on my favorite yoga mat, the sunshine yellow one that has traveled many miles in the past to retreats and teacher trainings, to classes and workshops where I too have had the privilege of being called teacher. This mat rolled like a scroll in the corner of my bedroom, waited ever so patiently for my body to be well enough to return to its sticky, yielding surface. Now unfurled lovingly, naked soles press down, I hear a voice resonating deep within: the place you are standing upon is holy—this is no ordinary moment, it is suffused with healing, pay attention, be present.

For one who has struggled fiercely with standing and walking over these three years since being diagnosed with MS, this place is indeed kadosh, holy. I am grateful.

I'm an Angry Bird

by Karen of My MS Journey (MS stands for Miss Sexy, right?)

When I was a bereavement counsellor, I had a client who was "stuck" in her grief and at every session would wail "why me?" As a non-judgemental counsellor it was my job to help her through these feelings but I have to be honest, there was a tiny part of me that sometimes thought "why not you?"

Fast forward a few years and as I face this new challenge of MS I have been all over the place with my feelings, even dipping into a little bit of "why me?" but as I thought of my client - why NOT me?

Of course it is only two short weeks since I was officially diagnosed but since my first Neurologist maaaaaaaaany years ago, the symptoms that I have been experiencing over the last couple of years fit MS so much that I suppose in some ways I had almost diagnosed myself. It's fair to say it wasn't a surprise at all.

The day I was diagnosed was December 22nd and my Mum had flown in from Florida, where she lives, to spend Christmas with us. That night as I was going to bed, after talking it all through, my Mum actually said to me that I needed to take this "more seriously" as it is in my nature to joke (I guess it is a coping mechanism). Well, I have moved on from the jokes and now I am ANGRY!

Even though I had my suspicions I was also hoping it would be something like a trapped nerve or something that could be "fixed". MS can't be "fixed" and each day seems to bring a new sensation and I am getting pissed off at the body that I have exercised and looked after most of the time (with the odd burger and bottle of wine thrown in for good measure) for betraying me.

I lay in my bed at night feeling awful and I picture my brain, wondering what is going on in there? Is more damage being done or are these symptoms a result of the lesions already there?

I am usually quite a happy person and I feel like I am turning into a grumpy, moody, weepy, pathetic person. How annoying I must be to know right now.

I am also quite vain (which woman isn't?) so I wouldn't dream of leaving the house without my full face of make-up (including lashings of the very best under-eye concealer to hide these dark circles) so I LOOK alright to everyone, which of course is the goal when applying the cosmetics. Then I get MAD that they can't tell how ill I feel.

I feel myself feeling frustration towards well meaning friends who tell me that it could be worse or how they know someone with MS that is doing great. I KNOW this is coming from a loving place to make me feel better and I would probably say exactly the same thing to someone if the situation was reversed. I want to say that I am NOT your Auntie Mabel and the reason that MS is referred to as the snowflake disease is that no two patients are the same and will experience their MS in a different way.

Of course, this is what I want to say but I wouldn't because at least these friends and family have offered support and said something. I am so thankful for each of my lovely friends and family who have offered support, listen to me moan about my symptoms (usually for the 100th time) and have never once made me feel like I am putting on them.

The people that have hurt (and angered) me the most are the ones that have said nothing at all but then I guess at times like this you discover who you can really lean on and who really cares.

I know that anger is part of the grieving process and as an ex-counsellor I know that when a person is diagnosed with a chronic illness they may go through all sorts of emotions of grief including denial, anger, depression and finally (hopefully) acceptance.

I am in the angry bird phase right now so I apologise in advance if I am a snappy cow-bag. I hope I don't offend or push you away along the way. I really don't mean to be such a drag.

So, enough about me - how are YOU?

Commencement

by Robert of The Gifts of MS

I went outside this afternoon, to enjoy the finally warm Southern California weather. And I'm enjoying the air, and the sunlight, and the smell of the trees... and I look at the bits of Backyard Project that are undone thanks to not my usual lassitude, but to the ravages of The Disease. A workbench I used to use a lot... but don't any more. Potted plants that I used to care for more assiduously, but don't any more. Sometimes because even walking up to them is difficult, sometimes because standing and dealing with them is difficult, sometimes because both are too difficult; sometimes because standing and dealing with them is (maybe) dangerous or (usually) just plain non-doable.

For all of us, there are Things that were once part of our lives, but are no longer. Things whose time has come and gone. Some of those Things, we left behind because we had no choice—we would have hung with them longer, if we could, but that possibility simply didn't exist (for example, the college we left because we at long last graduated from it, and once you do that, you're outta there). Some Things we left behind because their time had come, and we knew it; and depending on our relationship with them, letting them go was bitter yet sweet, or Not! Soon! Enough!!!

And there are the Things that we would have loved to keep a relationship with. But the Things themselves decided that the time was up. Or, in our case, the whatever-it-was that brought The Disease to us decided that it was time for us to travel a different road; a road without those Things.

Now, what is it exactly, that makes the letting go of some of those Things easy, and some difficult? The Buddhists would call it "attachment," but even if that term explains it correctly, it doesn't really speak to the way those Things are hooked into the depths of our being.

I hated my college for the first two years, I loved it with an amazing love the final two years. I hung around for three years after I graduated from the college (two of those years in the master's program). But eventually, even I had to agree that the time had come for Something New. That it was time to let those Things go, beloved as they had been. And really, many of them, the part and parcel of the Undergraduate Experience, were already gone. They had departed when my diploma was signed, and delivered to me on the day of Commencement. And interesting choice of words, that... not an ending, but a beginning.

And here I am, surrounded by Things whose time—for the moment, at least—has come. And I am facing a barrage of "Commencements." In so many ways... even in the once simple tasks of standing up in the backyard, walking across the back yard. The ways I used to do those little Things... those trivial, quotidian, almost unnoticeable because of their simplicity, Things... for now, at least, they're gone.

Somehow, "commencements" were easier to take when you knew they were coming for years. When you worked your ass off to achieve them. I'm sure there are some who might say that I actually did work my ass off to position myself to travel the M.S. Highway (and I don't mean with regard to the huge amount of weight I've lost) in some sort of mystical, non-immunological/neurological way; that I chose these "commencements" for myself; as Marley's ghost told Scrooge, that I forged this chain link by link and girded it on of my own choosing.

So these are among the gifts of M.S.: Commencements. Delivered daily. Sometimes even hourly.

The past is over. Time to begin the new. The past created precisely what is necessary to deal with the present. We couldn't deal with the present if we hadn't lived through the past.

Which means that the greatest gift that M.S. gives us is the ability to deal with the M.S. Highway.

But oh, the past... the wonderful, wonderful past. Was it really that wonderful? I certainly like to think so...

But as a very wise friend once said, there are many paths to enlightenment; but nostalgia is not one of them.

A Small Stone: Jan 14, 2012
by Laura of Shine the Divine

A small stone: A steel-mixing bowl rings cheerfully as a handful of green peppers meet its surface; animal awareness perceives vegetable and mineral interaction as the ethereal sound of a singing bowl infusing the kitchen with good vibrations.

A pocket full of pebbles: This weekend we celebrate the remarkable devotion and sacrifice of Dr. Martin Luther King Jr. and the many brave souls who also risked and gave their lives rallying around him. This Shabbat, we begin the book of Shemot, Exodus; an ancient journey to freedom that replays over and over again throughout time for nations, for individuals unfolding in unique ways. For me, freedom is not so heroic, but significant nonetheless for my beloveds and me.

Freedom tastes like vegetarian chili simmering on the stove. Vegetables chopped with my two hands, peppers, tomatoes, onions, garlic, cilantro, beans rinsed, cumin and cocoa sprinkled, lime squeezed--slowly...oh so slowly, not only because it is the speed at which I am able to attend to my work, but because this is how I know I am alive, this is how I honor the preciousness of the gift it is as a mother, strength and endurance improving, to prepare a meal for my family. A task that I’ve not been able to do completely from start to finish while standing and all at once without resting in between for four years. Freedom tastes like gratitude. Freedom tastes like love.

Un-tethered...this is the sensation I am experiencing. Released from my computer, my primary connection to the world beyond my windows and backyard for nearly four years. Freedom, I taste freedom as I putter about the house. Each day I MOVE away from the keyboard and 11inch screen to discover, recover, remember what I lived before, what it is to be a human doing, not just a human being. It is the reverse of what many long for, so many people tired of going, going, doing, doing, tied tight to the world beyond windows, yet for me this is a deep, deep blessing. The key will be to find the balance between the two—being while doing. I’m only human after all.

I am not the way I was, will likely never completely regain what has been lost, unless someday a brilliant scientist or team learns how to regenerate damaged myelin, still, I am grateful for the strength that has been renewed at this time and continues to increase daily. Baruch HaEchad. Blessed is the One.

“All progress is precarious, and the solution of one problem brings us face to face with another problem.” ~Dr. Martin Luther King, Jr.

And my thoughts return to balance. I miss being online, visiting my blogging friends who have become so dear to me. I must find a creative solution to balance my time on and offline; a tiny problem as problems go, no comparison to the challenges Dr. King was referring to, but still one I must face. These friendships are real and I do not want to cause more isolation in my life, forget about the kindness and support I have experienced from so many beautiful souls around the world. I don’t want YOU to feel that I have forgotten you or that I don’t care about your wellbeing, because I haven’t and I do. Where there is love, there is always a way…I will find it or it will find me, I have complete faith that this is true.

Well this pocket full of pebbles has grown into a cairn, fitting really, marking great achievements and small, gratitude, friendship, blessings and love.

This concludes the 106th edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on February 2, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, January 31, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #105

2012-01-05T14:04:00.000-05:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Strength, Hope, and Forgiveness in the New Year

Forgiveness and Letting Go

by Kate Wolfe-Jenson of Dancing with Monsters

Whether it's forgiving myself or someone else, I've discovered it's a practice.
I love practice. Have I mentioned that before? Forgiveness is built into practice.

I plan to do something. (Intention)
I make an effort to do it. (Action)
It doesn't go the way I think it "should" go. (Judgment)
I let go of my ideas about what should have happened. (Mercy)
I reset or re-envision my intention. (Resilience)
Repeat.

Watching myself around forgiveness, I have found an unfortunate tendency to get stuck on step three.

I judge. I try to let go, but it really shouldn't have gone the way it did and it's really not my fault, but if I'd only done it differently…

The image that came to mind is of carrying around a stone. I set it down for seconds and then, compulsively pick it up again.

Forgiveness becomes a practice of letting it go and letting it go and letting it go.

What Race Will you Win?

by Dee Dee Vickers

Some days my MS body feels okay -

but other days, in the bed I want to stay.

But get out of bed is a must for me,

cause if I don’t, that’s where I’ll always be.

One side of my left leg doesn’t feel right,

and the right side feels really tight.

But do a few stretches before I arise,

and once I’m up, each day is a surprise.

What challenges will I face walking the pool?

At least 30 minutes of workout is always my rule.

Then home to shower, and “put on my face;”

And now I am ready for the next big race.

Run a race, I think not for me;

but other challenges I soon will see

Paint a picture, arrange flowers in a vase,–

write a poem – these I consider to be my “race.”

We all have a different “races” we face each day;

but stay in bed, those races won’t come our way.

So stiff on one side, ache on the other,

but think of the “miles” we have still to cover.

Yes, it all comes when the sun peeks in at us

and no matter the ills, “just don’t make a fuss…”

The world is our canvas to paint on each day

So get out of bed and be on your way!

Dee Dee Vickers

Georgetown, Texas

January 5. 2012

Untitled

by Natalie of Sunny, With A Chance Of Clouds

To protect a mind too fragile.
And determined by those misguided,
There is a purity that should remain unaffected.
If innocence and love could be spared.

And even though good intentions are meant,
The disadvantage comes to the one.

To become shielded,
Is no escape from that which can not be erased.
One shielded remains confused.
And is convinced truth must be avoided.

One shielded remains convinced...
A running away from any hints of truth is a benefit.

Unfortunate are those forever troubled.
Running away to shelter themselves,
A lie to comfort.
When truth is not enough,
Or which truth hurts too much?

You Can't Be Too Strong

by Marc Stecker of Wheelchair Kamikaze

One of the great paradoxes of dealing with MS: it's a disease one of whose hallmark symptoms is weakness, yet it demands the utmost strength from those dealing with it. From the psychological impact of the debilitating nature of the disease itself, to the shifting landscape of compromises and adjustments the patient must make in an attempt to maintain some semblance of normalcy, to the frustrations of dealing with an often maddening medical infrastructure, to the well-intentioned but misguided efforts of friends and family, to the sometimes heart wrenching indifference of the world at large, MS presents hurdles and challenges that require a measure of fortitude, grit, and endurance that most suffering from it never imagined they possessed. And yet as a group MS patients soldier on, displaying quiet courage and the hearts of lions.

Those suffering from the relapsing forms of the disease must deal with an illness ever lurking in the background, waiting to strike once again and leave them reeling. When each new attack finally subsides, often left behind are lingering symptoms, some weakness here, a little cognitive dysfunction there, distressing calling cards serving as permanent reminders that, despite all outward appearances, trouble resides within. Patients bestowed with the wonderfulness of progressive disease get to experience the pleasure of watching themselves circle the drain, day by day, month by month, year by year. Like the gradual shortening of days from July to December, the change barely noticeable on a daily basis but quite dramatic over the long haul, the disease creeps along an almost imperceptible pace, molehills becoming mountains with the passage of time. The slow but steady drip of the disease can lull one into to a false sense of security, until the guttural realization strikes that some physical action done without a thought only last year has now become cumbersome at best, impossible at worst. Yes, you can't be too strong.

Despite the obvious mettle needed to meet such challenges, many patients castigate themselves for their inability to withstand the ravages of the disease, disgusted with the fact that sheer force of will cannot beat back the onrushing tides. I have a close MS friend who every day fights through crippling spasticity so excruciating it often literally brings him to his knees but still manages, using a variety of disability aids and mobility devices, to put in his day at the office, sometimes forced to drive by using his arm to physically lift his leg on and off the gas and brake pedals (not recommended, by the way), compelled by his overwhelming desire to provide for his family and not give in to the disease. By day's end he can barely make it back into his house and onto the couch, scarcely able to lift his head, but instead of acknowledging his extraordinary efforts, he beats himself up over his perceived lack of toughness, his powerlessness to simply put a stop to the beast that so insistently ravages his body.

I recognize this same tendency in many of the patients I'm in contact with, and at times in myself. I put off the purchase of a power wheelchair for far too long, unwilling to acknowledge my tremendously obvious need because of the complicated psychological interplay of ego, self-image, and sensitivity to how I might be perceived. I sentenced myself to house arrest in a foolhardy effort to maintain an inner illusion of strength, when in fact true strength was only achieved when I finally gave in and reconciled myself to my need and situation. In a kind of mental jujitsu, what I thought was strength was actually weakness, and in turn, the very symbol of weakness, the wheelchair, became testament to a moment of strength when I finally let go and accepted my new normal. Yes, you can't be too strong.

Apart from the strength needed to deal with the disease itself, navigating through the labyrinthine and often counterintuitive tendencies of the modern medicine machine can test the determination of even the most valiant among us. Instead of making things easier on those suffering from chronic disease, it sometimes seems like the deck has been intentionally stacked against us. Trying to make sense of the never ending stream of research and theories about the disease can be mindbending. MS is autoimmune! MS is infectious! MS is caused by faulty veins! It's all the fault of genetics, toxins, vitamin deficiencies, dietary imbalances! Why not throw in out of balance humors, or unfortunate astrological alignments? Does anybody know what the frack they're talking about? What seems crystal-clear one minute is thrown into doubt the next. Up is down, down is up, and all the while I still can't use my right arm and leg, dammit!

The human tendency to become emotionally wedded to a particular idea or orthodoxy often pits patients against patients, in never-ending circular arguments that ultimately may only serve those who are all too willing to make a buck from our compromised circumstances. We must deal with pharmaceutical companies mandated to be more concerned with the bottom line then with patient well-being, and with doctors who are very often under their sway. Never is it more evident that modern medicine is a business than when you realize that most of the MS research news is reported on the financial pages of the newspaper. Desperately searching for something, anything to hang our hope on, we can be easy prey for practitioners of "alternative" medicine, who may be charlatans or saviors, often indistinguishable when cloaked in the fog of the ongoing battle and blinded by increasingly desperate circumstances. The constant clutter of contradictory and conflicting information can seem impenetrable, yet precisely because of this information overload it is imperative that we attempt to keep ourselves informed and clear headed, in order to self advocate in an environment that demands it. Yes, you can't be too strong.

We suffer through the indignities heaped upon us by miserly insurance companies and incompetent practitioners. Can there be a more surreal experience than having to fight with an insurance company drone to try to get an approval for a drug that has the potential to kill you? When I finally capitulated and agreed that I needed a wheelchair, I was greeted by wheelchair vendors who quite blatantly tried to pawn off products that obviously did not suit my circumstances but would do the most to fatten their commission checks, and by insurance company rules and regulations clearly designed to win a battle of attrition in the expectation that a needful patient will simply weary of the fight and take whatever is offered. In order to get a chair with qualities that would enable it to hold up under the rigors of the streets of NYC, I had to repeatedly appeal insurance company decisions, and to whom do those appeals go? Why, the very same insurance company, of course! After months of constant screaming battles, and with the help of the physical therapy staff at my neurologists office, I was finally granted an approval for the appropriate chair, a device the thought of which, at the time, left me slightly nauseated. It might have been easier to try to part the Red Sea.

In closing, I'll relate a story that another dear MS friend of mine recently told me. She requires home health aides to help her through the day, and a few weeks ago asked one to fix her a can of soup. My friend directed the man to the cupboard that contained the soup can, and to a drawer that held a good old-fashioned manual can opener, the kind that clamps to the edge of the can and then opens it through the action of the user twisting a rotating handle. The aide picked up the contraption and held it in his hands, stupefied. Somehow, this middle-aged man had never before even seen such a can opener, a device I believe I learned how to use when I was about five years old. In startled disbelief, my friend had to instruct the aide, in step-by-step fashion, exactly how to operate the befuddling instrument. When he was done, the aide explained to my severely disabled friend that being a home health aide was only his "hobby", and that he was a financial planner by profession! Given the bang up job the financial wizards have done with the world's economy, it's little wonder a manual can opener fell far outside this man's power of comprehension. Geez, you think the guy might be better off taking up birdwatching or stamp collecting, benign pastimes in which his gaps in rudimentary knowledge might not negatively impact the day of a sick person?

Honestly, you can't be too strong…

This concludes the 105th edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on January 19, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, January 17, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #104

2011-12-22T14:17:00.000-05:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Celebrating FOUR years of the Carnival of MS Bloggers!

This community began as an attempt to connect the individuals online who were talking about multiple sclerosis on their personal blogs. As a health policy blogger, I had witnessed the power of the weekly carnival to connect persons in the health policy community as well as the medical blogging community. I wanted to do the same for patients and caregivers in the MS community who were talking about any and all aspects of their lives with MS.

The MS blogging community barely had 100 bloggers at the end of 2007. Now there are over 600 listed blogs in the MS Blogging Community. As new bloggers contact me, I update the listing so that everybody can be included. Take a look, even the blog of the National MS Society is listed. You can be too!!

If you have MS and blog about it (even if only occasionally), send me a quick email introducing yourself. Be sure to include the URL of your blog, please. However, I must say upfront that websites/blogs which are strictly commercial in nature will not be listed. If you are promoting a book, a consulting business, or product, I'm sorry...that is not what this community is about.

As the founder and leader of the Carnival of MS Bloggers, I personally read as many blog posts as possible each and every week from throughout the community. Sometimes I will select excellent blog posts to feature, however it is much appreciated when persons submit a chosen post to be included in an edition of the Carnival. Don't be shy, send me your links!

A Special Role?

by Judy of Peace Be With You

We MS bloggers

though quite vocal comprise a

small minority.

If ten thousand blog,

we're only .4%

of world MSers.

In our special role,

should we be spokespersons for

the ones with no voice?

Let your voice be heard. I'm excited to continue the Carnival tradition into our FIFTH YEAR of community blogging. I wish everybody very happy holidays and safe travels this season. Best wishes for a healthy year in 2012.

This concludes the 104th edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on January 5, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, January 3, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #103

2011-12-08T11:50:00.003-05:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Mothers, Love MS, Job Accommodations

Clinging

by LauraX of Shine the Divine

Even life forms we consider to be simple are uniquely rich in their complexity. They cannot survive alone, but must cling to something else for nurturance. Solitude is precious, so too is connection. Finding a balance between the reality of inter-being and our cyclic desire for separation is a dance we are ever engaged in.

I am watching this in the relationships between my two teenage daughters and me, their mother as they become increasingly more independent —- “Mom, are you kidding? (exasperation) Leave me alone!” —- “Mom (in tears) what should I do?” -- a back and forth, not so gentle tug on my heart.

I see this in my own need for assistance from others due to the physical challenges resulting from Multiple Sclerosis and my longing (like my children) to do things on my own, to be by myself, and to figure things out in my own way in order to continue my human development.

There is a healthy clinging, we must acknowledge, in the midst of blossoming into who we are becoming; sometimes it is subtle, other times gripping, still despite yearning to detach, differentiate, be “ourselves,” we inter-are, and that is the way it is.

~~~~~~~~~~

It is official. I am no longer a "cool" mom. Not even to Rosie:-( --almost 15 and for Belin being almost 18, this is not news. Somehow it is harder with the youngest, more surprising, though you'd think it would be the other way around. I am in the thick of it now! I'm not sure exactly when the turning point happened, when I became more exasperating, annoying, irritating, tear-provoking instead of the fun, funky artist mom to be proud of, the go-to hugger and comforter with absorbent shoulders for tender tears (ok that still happens, occasionally). I suppose it has been gradual, and is of course developmentally appropriate. That doesn't make the poison dart comments, eye rolling or extreme sensitivity and misunderstandings of pretty much anything I say any easier to sit with, but having been a teenager a long time ago with the same feelings about my parents back then (we are very close now!) and having taught teens for years, listening to them complain to me (I was still "cool" then, I wasn't their Mom) about their perfectly loving and admirable parents (my peers)...I get it. When I think of all that I know about child development as an educator and my own experience, it IS a relief to recognize that none of this has anything to do with Multiple Sclerosis. While it certainly has an impact on our family life, these are all par for the course growing pains that every family must endure. The really good news, and there is some, is that like all things in life, everything changes...and gauging from my relationship with my own parents, in 10 or 20 years, give or take, this too shall pass:-)

Death of a mother is the first sorrow wept without her

by Heidi of Journey with MS

In the midst of moving and starting a new job, my mom passed away. My wonderful, happy, amazing mother. She drove me crazy, but she always cared 100%. I was her only child, and she cherished me. I don't think I ever realized how much I cherished her until she was gone. It's been 9 days now. There have been 9 days of my life that she has not been on this planet.

I miss her terribly. I would give anything just to be able to talk to her one more time. To hug her one more time. To listen to her ramble one more time. To deal with her pack-rat tendancies one more time.

I love you mom....I hope you know how much.

http://www.legacy.com/obituaries/hartfordcourant/obituary.aspx?n=barbara-j-gutekenst&pid=154426008

STOP FIGHTING YOUR MS. Be a Lover.

by Diane J Standiford of A Stellarlife

A reader asked me to write a post about what it means to "fight" MS. She said it is "...beating the crap out of her..."right now. The phrases "fight MS," "fight Cancer," "fight Hunger," are, in my mind, too overused. Simply put, it would mean to do something to try and stop whatever, from having the upper hand; don't crawl in a corner and say, "I give up. I just will die. This is more than I can do anything to stop." It also is used to imply a gathering of troops to do battle against an enemy. Note, however, that we don't say we will "fight bullying," no, that we say we will, "Stop." Again, stopping that which is hurting us. Why don't we have the slogan, "STOP MS?" or "Stop Cancer?"

The reason we don't use the word 'stop' is because we know that we can not stop those diseases. Only science and medicine can stop a disease. So, with MS, the only option contrary to crawling in a corner and suffering, is fighting. Well, I am a lover, not a fighter. My view is a bit different.

When you learn martial arts, you learn to move with the kick, punch, or throw, that comes your way. In acting class you learn it is the receiver of a slap who moves with the slap before it strikes, as it strikes, like a dance. In yoga, you learn to move INTO each pose, into the tightness, and relaxation will follow. I am not a "MS Fighter." I am a MS Lover. I move with my symptoms to lessen their blow. I look into the mirror and love who I see; if I hated who I see, how could I expect anyone else to love that person?

Within hours of hearing, "You have MS," I accepted that MS was now a part of me. I told my family, friends, and co-workers as soon as I could. If any of them couldn't accept me with MS, then they were not going to remain in my life. Maybe because I am gay and had spent too many years not being, in Oprah's words, my authentic self, this new aspect of me was not about to shove me back in a closet. That was that. It was never an issue. The positive response from my friends and co-workers was overwhelming. But, understand, I didn't need their support to fight MS, I needed their support to LIVE with MS.

Yes, your doctor can give you medicine to help and in some cases stop certain MS symptoms. But nothing stops MS and do you REALLY want to fight with yourself all your life? You think you are exhausted now?! EMBRACE. There is nothing you can't embrace that is a part of you. When MS slaps you, move with it. If it takes away your vision, get free books on tape. If it makes your hands unable to hold a book, grab a magazine. EDUCATE yourself about MS symptoms and make a plan. (My blindness took me off guard and I was scrambling in the dark --pun intended-- to find agencies that could offer ideas for continuing with my life. I learned about free phone services, free books on tape, many, many services as you can imagine. And chances are strong that YOUR MS blindness will go away. Just a punch you can embrace and move with instead of fighting. While legally blind, I continued to work, enjoy books, take walks, even care for my quite ill partner, oh, and BUY A CONDO!) I can't imagine wasted time "fighting" during those days. I had too much TO DO!

When I was too weak to lift a paperback book, I starting lifting a pencil as if it were a 10lb. weight---every day. How embarrassing would that be at work, if you had not embraced your MS? After awhile I could lift a pen, then a rebar chunk paperweight---get the idea? Now, I don't call that fighting MS, I call it learning ways to live with it. Every symptom MS threw my way, I thought up a way to improve what it took from me. Little by little, and all the while building my overall health in all areas. I start with lists. I am a lister. It helps keep me focused.

When you are so depressed about your lot in life, EMPOWER YOURSELF. How do we do that? By first accepting personal responsibility for our lot in life. Look at Christopher Reeves, wow, could there be a worse lot? He blamed no one, not even his horse! Once we stop blaming something else, we can use that energy to focus on how WE can help ourselves. Humans need water, air, and, in my opinion, laughter. We NEED to laugh. Find your inner laugh-a-thon and pursue that. If you can't laugh at yourself, now is the time to change that because MS can be damned hysterical. Going to feed the dog? NO you are not! You are going to KISS the floor! Hello floor, just wanted to touch base! First time I fell I thought it was the end of the world. The last time (so far) I fell I thought it was all over. I cursed the TV! (yeah, that's how bad I felt!) But, I reminded myself that what goes down must come up and that made me laugh. My own silliness made me laugh. One finger typing? SERIOUSLY? Hysterical! My typos are so funny, I often want to leave them!

A killer MS punch? My 'wedding ring' can no longer fit over my contractured ring finger. I just was so down over that for YEARS! Then I looked in the mirror and said, "Diane! Wake up! It is just a symbol." And I figured out I would wear it around my neck. Now, I can't believe I wasted so much of ME by feeling sad about such a simple to change symbol. CHANGE. MS is so changeable, unpredictable---so...since I have embraced it as being a part of me and since I want to love me, I now must love change. Not my natural personality, but wait---how much do you hate to hear, "That's just the way I am!" I always hated hearing that and swore I'd never say it. Well, now I must LIVE it as well. (Walk the talk or roll the goal, as we in wheelchairs say.)

Find a purpose. MS took my job from me. I felt so fulfilled at my job. What was I to do? So much fatigue, weakness, slurred speech, weakness, cognitive losses, fatigue, I KNOW, I'll try a blog. My readers won't know when I type one letter and have to nap or type a sentence then call my caregiver for a toilet break and maybe, just maybe, I can help others with my stories, my ideas, my silliness---and now I am a published author. My sense of purpose has returned. We all need that. Face book has given me a platform to address my political issues and to make new friends. The Internet is a friend of people with illness--no need to ever feel all alone. Make friends.

Fight MS? A waste of energy. Learn how to live with it. Embrace. Love. Educate. Plan. Execute. Laugh. Fall back with the punches, you will be amazed at how few fights your opponent wins!

Ask an MS Navigator: What are job accommodations and how do I get one?

by Kris Graham of National MS Society Blog

We recently received a question about how to obtain accommodations when MS starts to get in the way of doing your job. What perfect timing! I was just about to write my first post on employment and MS …

First, you need to know whether or not the ADA applies to your situation. You can request reasonable accommodation under the ADA if:

You work for an ADA-covered employer
You are “qualified” to do the job; AND
You are a person with a disability as defined by the ADA.n>

ADA-covered employers include private employers with 15 or more employees, all state and local governments, employment agencies and labor unions.

“Qualified” to do the job means that you have the “skills, experience, education, or other requirements” of the position, and you “can perform the essential functions of the position with or without reasonable accommodation.” (See Disability Law Handbook - Employment and the ADA)

Person with a disability, according to the ADA’s definition, now includes most people with MS, thanks to the passage of the ADA Amendments Act and updated Equal Employment Opportunity Commission regulations.

Accommodations can be things like new equipment or changes to existing equipment. Another example is a change to your work routines, such as hours worked. Read a few real-world examples of accommodations that have worked for people with MS.

Two important things to remember about accommodations:

You must be able to perform the essential functions of your job. The ADA does not require employers to reduce essential job functions, but you can ask to change how you perform an essential job function. Usually employers decide which job functions are essential.
Your employer does not have to provide you with your first choice in accommodations. The employer has to provide an accommodation that is reasonable and effective, if available—so be ready to discuss alternatives.

Be prepared! Before you request accommodations, make sure you can answer all of the following questions:

How is MS affecting your job, potential job, or application process?
Why are you requesting accommodations?
What accommodations or changes to your work will be effective?
What information will you need to provide to your employer (or potential employer)?
When should you speak with your employer (or potential employer)?
Who should you involve in the conversation?
How should you follow-up on your request?
What are your rights if things go wrong?

These resources can provide more help and information:

The Win-Win Approach to Reasonable Accommodations
ADA - Your Employment Rights as an Individual With a Disability
Employees' Practical Guide to Negotiating and Requesting Reasonable Accommodations under the Americans with Disabilities Act (ADA)
SOAR (Job Accommodation Network’s Searchable Online Accommodation Resource)

Not sure if your employer is covered by the ADA? Contact your regional ADA Center and the Job Accommodation Network (JAN) to make sure. Both organizations are free and confidential resources. JAN has staff trained in exploring possible accommodations for your particular situation.

If your employer is not covered by the ADA, contact an MS Navigator® at 1-800-344-4867 for assistance in exploring other possible legislation that may protect you.

This concludes the 103rd edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on December 22, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 20, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #102

2011-11-24T11:02:00.001-05:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Thanksgiving, Gratitude, and Faith

Reflecting on Abundant Beauty

by LauraX of Shine the Divine

It has been a week of gray skies, and gray emotions. Looking back and reflecting on these photos from October, the bright blue sky, reds, golds, greens and browns lifts my spirits. I'm so grateful to live in a place abundant in beauty.

Loved Ones

by Judy of Peace Be With You

A loved one’s presence

provides prized companionship

and valued support.

Buoyed by precious love,

one’s spirit takes flight and soars

past stressful moments.

Though hard times exist,

a sense of kinship prevails.

One is not alone.

Wait a Minute

by Mary of Travelogue for the Universe

Wait a minute,

just a slice of time,

does it look like a pickle slice?

Wait a minute,

catch your breath,

can you hold it,

in your hands?

Wait a minute,

did you ever hear,

"Wait a minute,"

and it really meant to

"stop?"

Wait a minute,

60 seconds,

how far does Earth travel

in that time?

Wait a minute,

adult time out,

wait a sec is

another way to say,

Wait a minute,

or a second,

take a moment,

for a change.

Our circumstances have nothing to do with our happiness

by Michael from Perspective Is Everything

I wrote this more than three years ago and came across it again recently. In today's world, it seemed appropriate to publish it again. I hope you think so too.

Sick or healthy. Rich or poor. Thin or fat. Tall or short. Curly haired or bald. None of it matters when it comes to waking up happy everyday. What does matter is gratitude and perspective.

What makes a man rich? It is not money. There are plenty of poor people – “economically challenged” – that feel wealthy in ways that are beyond their wildest dreams. They are ‘loaded’ with family and friends, rich in experiences, and participate in life like tycoons. They are showered in immeasurable riches of making a difference to someone and to the world in which they live. These are the people whose vocabulary does NOT include phrases like “I will be happy when…”, or I would e happy if…”

These people know that there are two keys to happiness. Those keys are gratitude and perspective and they go hand in hand.

Gratitude comes from the recognition of just how much you already possess. Gratitude is the opposite of taking things for granted. The challenge for most people is that they don’t know what to be grateful for or where gratitude begins. There are hundreds of items on my list. Below are some of my favorites.

1. Eyes to see and read
2. Ears to hear and listen
3. Arms to hold. Hands to touch
4. Mind to think and understand
5. Heart to feel and care
6. Roof overhead & bed to sleep in
7. Food to eat and tongue to taste
8. Friends to care for & care for me
9. Family to love & spend time with
10. All of my good health. (Other than my MS, I have a lot of good health that I don't take for granted.)

These are all items that you can’t buy and that cannot be taken away from you. Even if I lost one of these, say sight or hearing, there is still much to be grateful for.

Recognizing the value of these assets is a matter of perspective. What’s your perspective? Where does your gratitude begin? Just how rich are you? It is my hope that if you are reading this, you are already a very wealthy person.

Participate. Make a difference. Live a life that matters.

A Problem of Faith
by Kim of Doc, It Hurts When I Do This...

Neurological diseases are a matter of science. They are measured and they are measurable, recipes so nuanced that had they been capable of being reproduced by gifted chefs, it is easy to imagine that Julia Child might have retired much sooner had she bungled early attempts to recreate them at Le Cordon Bleu.

Multiple Sclerosis, for example, involves a complex batter of CNS inflammation, brain and spine lesions, axonal degeneration, a certain number of oligoclonal bands, various clinical anomalies, fatigue, phantom pain, optic neuritis. The recipe is not exclusive; other diseases share some of these ingredients. Lyme disease, PML, Transient Ischemic Attacks, Diabetes, bone and blood cancers, atherosclerosis, migraines, Fibromyalgia, thyroid diseases, herpes zoster varicella, Parkinson’s. Think of how many recipes use eggs, milk, flour and butter. The light-weight chef might easily set out to make a perfect cheese soufflé and wind up with cheese bread. The dish might look and taste like a soufflé, but only the sophisticated palate of Jacques Pepin could vet this concoction and advise the staff as to whether today’s special is soufflé de fromage or pan de fromage.

The palate of a gifted neurologist can usually vet a cluster of neurological symptoms, evaluate the location and shape of lesions, count the oligoclonal bands in the spinal fluid and compare them to those in the blood serum, review the patient’s history of probable flares. The criteria for an MS diagnosis are quantitative as well as qualitative: four o-bands, three lesions, two flares. The degree of disability is measured by numbers on the EDSS, the number of new lesions and their sizes are measured, the number of flares is measured, and the speed of electrical impulses from the eye to the brain is measured. It is science and it is measurable, which suggests that, after a diagnosis is confirmed, it continues to be measurable. And if it is measurable, we assume that the measuring will continue to yield new epiphanies. We assume that these epiphanies will support the narratives we speak to ourselves about how to live.

One narrative is that taking medication will help us live better. The neurologist whose palate identified the sour taste of MS recommends a sweet and protective dressing of disease-modifying therapies. These recipes, too, are science. They are measurable. Their mechanisms have been studied and the dosages have been tested in FDA trials. Interferons, glatiramer acetate, natalizumab, fingolimod. Each has its way of preventing T-cells from damaging myelin. Clinical trials show a 30 percent reduction in relapses compared to placebo. The narrative we tell ourselves is that if we take these drugs then we will have 30 percent fewer relapses. The narrative bespeaks a slowdown in disease progression over our lifetimes. We assume that our improvement will be measurable and that these outcomes will support the narratives we tell each other about how to live well with MS. We do not need to have faith, we have science.

But this is not true.

The more we learn about the therapies, the more gray areas we encounter. Clinical trials, for example, showed a 30 percent reduction in relapses compared to placebo. But this means that the 600 people who took the drug had 30 percent fewer relapses than the control group of 600 people who took a sugar pill. The trial subjects all had a history of at least one flare per year. Their histories of frequent relapses made their outcomes easier to measure.

In real life, we all relapse at various intervals. Our relapse rate on any of the disease-modifying therapies will not reflect that of the trials. If we have a history of relapses that occurred every four or five years, we will have no way of knowing whether the drug is working until many years have passed. We know that relapses follow no particular pattern. The attacks are random. We have no way to measure the number of relapses that might have been had we not taken the therapy. The drug maker asserts no claim that the therapy will actually work at all. If there is a faith narrative within the research community conducting a trial, it is part of the method, the hypothesis that must be tested and then quickly abandoned if the measuring fails to support it.

Science extends no faith narrative to the patient community. Not faith, but rather, hope. We eagerly pick up on the hope narrative. Hope for a cure, new hope for experimental therapy, renewed hope for a cure. We hope that our new therapy will slow the progression and buy us time until there is a cure. HOPE 4 MS is the most common name for MS support groups. Hope can distract us from the breakdown of other narratives. Taking my medications will make my life better. The more compliant and knowledgeable I become, the better I will be, both physically and emotionally. I’m feeling worse than ever, but I have hope that a better therapy will come along.

Belief in a higher power offers both hope and faith. Religious narratives are useful and comforting. If I remain faithful to God, I will be rewarded. I pray to God and he hears me. Doing good will put me in favor with God. I prayed that God would restore my vision and after four years of blindness, he blessed me by restoring my eyesight. The most pious among us acknowledge no gray areas. Your prayers will be answered. If you give yourself to Jesus you will be saved. Tragedies happen for a reason; God wants us to learn something important from them. Evil is always punished; good is always rewarded.

The positive thinking narrative works similarly. It is the single loudest narrative in American culture. If I think good thoughts then good things will happen. Stay positive. A happy person is a healthy person. If I believe strongly enough that my cancer will be cured, then it will. The premise of positive thinking is denial. I’m going to beat my Stage IV cancer, I don’t care what the statistics say. Depression can be avoided if people would just get a positive attitude. I never get sick because I don’t believe in disease. It’s mind over matter.

When we speak these narratives to each other and to ourselves, in what, exactly, do we have faith? When our faith breaks down, what is it that makes us fall apart?

The core of our faith is in the belief that our narratives are true. Ten million people can’t be wrong. We lose our minds when we fear that something we’ve heard and repeated so many times was only wishful thinking.

The responses to this breakdown are many. Depression, drug and alcohol abuse, suicide. But the majority of us respond with denial. For most of us it is a necessary choice. The devout Christian doesn’t abandon her belief in Jesus for very long. Religion is useful and comforting and loopholes abound. God works in mysterious ways. Yes, of course, she says to herself, there is so much I don’t understand. She begins to feel better, her terror all but forgotten. Many of us can abandon the untrue narrative and embrace a new one, something that might be true. Copaxone wasn’t working after all, I’m going to stop. But Gilenya has a better relapse rate, this might be the one.

The bravest souls among us are also the boldest. Not only do they abandon the narratives they find false through a crisis, they regularly analyze their narratives and willfully cast out those they feel no longer serve them. They search for no substitutes. They are not unhappy people, only brutally honest. They can live in the moment and say what they observe, knowing that everything could change the moment they finish a sentence. They need no god or hope or platitudes to feel secure. Security itself is a false narrative.

Multiple Sclerosis constantly challenges our life narratives. Disease happens to other people, not to me. I’m going to be one of that 33 percent of MS patients who will never need a wheelchair. I’m not having a flare, just a bad day. I’ve had MS for twenty years and never had optic neuritis, so I’ll never have optic neuritis. I’ve taken Avonex for nine years, so this new problem with seizures must have been caused by something else.

The patient with chronic disease waits for science to catch up to the hope. Whether we embrace, abandon, or modify our narratives is a matter of coping and it is very personal. Our relationship with science is circular; through our life narratives, we maintain our faith that science will triumph, and this brings us hope. Science feeds our hope. The more it advances, the simpler the recipe becomes. Less is more. This new cancer treatment kills only the abnormal cells.

The murmur of new MS narratives can already be heard—the rest can be easily imagined. The MS treatment of the future will be individualized; we’ll know the person’s bio-markers, her blueprint, if you will, and deliver the two or three designer molecules to the right spot and presto, she’ll run around the block again. It’s so simple. Why didn’t we see it before?

This concludes the 102nd edition of the Carnival. Thank you for making this such a wonderful community online.

The next Carnival of MS Bloggers will be hosted here on December 8, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 6, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #101

2011-11-10T20:42:00.001-05:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Unexpected Surprises

Sticks

by Laura of Inside MyStory

Have you ever done something that you felt was a pretty useless effort but you did it anyway because it was the right thing to do, never dreaming that you would get a better outcome than you should dare hope for?

Fourteen years ago I took the time to plant three white pine saplings in the back yard. These were those free trees that are given to school children to take home and plant as part of Arbor Day celebrations. Trees is a liberal use of the word, they barely looked like trees, they were more like a piece of greenery that could be used in a floral arrangement than something that should be planted; a little tuft of pine needles on the end of a stick. The fine roots at the end of those sticks were barely visible.

Rather than ignore them in their sad state, wrapped in a plastic bag, I followed the attached instructions and dug shallow holes in the back of my yard for these three sticks. Much to my surprise, all three of them took root. Had I known they would actually grow, I would have planted them differently, but I had assumed they wouldn’t thrive in my care and dug three holes about three feet apart .

A few years pass, and to my surprise all three sticks survived but I had planted them too close together, and told a good friend to come and take the small one away to her yard, to give the others the room to grow. She made the move while I was at work, and to my dismay she had taken the wrong tree. Instead of the runt of the group, she had removed the middle sized white pine, a tree that had already grown to a height of over 6 feet.

That middle sized tree didn’t survive the shock of the move to her yard and quickly lost all its needles and was once again just a stick, just a lot taller than its humble beginnings. The 2 foot runt was still in my yard, in the shadows of the biggest tree, which was quickly hogging all the sunlight and water.

Looking out in my yard today, I can still see that runt, struggling to grow in the shadows of the other sapling, which has now reached a height of almost 40 feet and is a magnificent specimen. The runt is merely a dwarf version of the big tree, and has the same perfect shape in all of its now 8 foot glory.

They were the same when they went in the ground, planted in the same location, and given the same care. I could not have projected this surprising outcome or tell you why one thrived while the other remained fairly static.

I didn’t expect these sticks to grow, but it provides me a reference as to how sometimes I go through the motions anyway of what is expected, and I end up being pleasantly surprised.

Looking at these two trees remind me of why I continue to take my daily disease modifying drug. I’m not sure that those daily injections will ultimately make a difference in the course of my disease. But I keep planting that needle, just in case I’m wrong. And I’m open to being pleasantly surprised.

A Letter

from Travelogue for the Universe

from the clinic,

nearly left it

there,

on the table,

by my diary,

of my shots

i have had

for

4 years

now,

but the letter,

had a feel there,

out of place,

i had a

feeling,

it was not a simple

letter

but a message

that

my study

will

end soon.

I told

my patty,

my sweet voice

who monitors

progress,

that

it was

weird,

being told after

4 years

that this will all

change,

somehow.

She said,

everybody felt

that way.

Seemed like I was just getting used to it,

having more faith that this is the right

regimen.

Knowing the

funding

has a lot to do

with

well,

everything,

and politics,

is right up there too,

and when we feel

powerless,

it is because

are.

stay tuned, you know as much as i do.

will find the results of my study in January

and discuss next steps.

4 years no exacerbation,

hope they keep me on what i am on,

whatever that turns out to be.

mary

Secondary Progressive MS, When MS Retires

by Diane J Standiford of A Stellarlife

I used to think secondary progressive MS was the worst thing that could happen to me. I mean, after all, if you start at relapsing remitting, the progression to secondary is the end of the line---all downhill from there. Well, that may be true, but I'm not living it yet. In fact, I feel better than I used to.

Back in 1990, after my initial diagnosis, my hopes were on being that 50% who never would rely on a wheel chair. It seemed, for 15 years that I had made it! But, alas, here I sit, power chair at my side---always. Oh well, you takes your chances. I refuse to accept the whole "secondary progressive now you are just a downhill headed snowball" thing. Um, I don't roll like that.

In truth, some functions have come back that I thought were gone forever. Plus, there is a certain tranquillity with not waking up each day and finding a relapse starting. As my neurologist asked me 5 years ago, "When was your last relapse?" I couldn't remember, in fact, without all the blog and Face book reading I do, I'd probably have to really think hard to recall what they were like. Much of the uncertainty of MS is now gone. Here I am. Being 54 leaves me with more health issues to worry about than MS.

Like cancer. Had it once, don't want it again. Liver problems. Had them once, don't want them again. Diabetes runs in my mom and a brother (both of whom I look just like), don't want that.

Then there is mom's Alzheimer's---like a shadow that I see every so often, hanging around...certainly don't want that. My point is that MS has crept lower on my health concerns list. Secondary progressive can do that for ya. It has shown certain limitations, but I will always continue to try and erase those. Bottom line: there is so much more I CAN do than I can't do. My focus is clear for the goal of quality of life.

Back in the '90s, I was working at a job I loved, walking hills of Seattle every day, driving, but my quality of life was pretty sucky. I would never have admitted that then, because who KNEW where I might be in 10 years, but now I can say---it was really difficult.

I feel bad for people diagnosed with MS so early now, I do. Those years BEFORE my diagnosis, almost 8, where today a MRI would have pegged me, were terrible and scary. But they passed and newly diagnosed people now seem so freaked out! (As I would have been. I would never have gotten my job with the city that afforded me such great health benefits. I might even have headed back to UGH Indiana. So MANY things I never would have felt able to do, chances I would never have taken.) Without a CURE, early diagnosis just seems more of a trouble maker.

If I found out today that I will get Alzheimer's---what good will it do me? NONE. I already play all the brain strengthening games, eat the healthy foods, exercise; not a future I'm worrying about.

Secondary progressive MS. SPMS. There are worse things to have.

This concludes the 101st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 24, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, November 22, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #100

2011-10-27T12:40:00.001-04:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Living Fiercely, Sexy Limps, S and M or MS?, Acceptance

Telling my Mom

by silver lining of ladeedah-msandlife

My first thought when I got diagnosed with multiple sclerosis in March was, how am I going to tell my mom - my loving, high blood-pressured, easy to stress out mom? I want to keep her calm and her blood pressure low.

She knows I have medical stuff going on, I had to cancel my Spring Break plans to go home because the doctors said I am not fully diagnosed although it looks like M.S. and I'm not medicated also travel can be stressful on M.S. They want to do another MRI. So she's waiting for more medical answers about what's going on with me. Then I got the final diagnosis.

I was nervous about telling her. She's gonna be shocked and upset, it doesn't run in the family. This will be weird news and difficult to share.

One thing about MS it messes up my memory and I get words mixed up often. I told a friend the doctor prescribed me Aveeno. After her laughing hysterically she corrected me, “Aveeno is bath soap, you mean Avonex.”

When I did tell my mom I was prepared with a friends suggestion to tell her all the help that's provided and the good things. That will help keep her calm. My friend and I practiced and I got to a point where I felt that my delivery of the news would go well. I call her. Deep breath, I can do this. I had a pleasant, calm tone, made fun small talk for awhile and then decided I was ready to calmly tell her.

“Now I finally know why I'm tired all the time and keep running into walls. I've been diagnosed with S&M”...shocked I realized what I said.

The mind has the ability to go 100 miles an hour in analyzing, calculating, weighing ratio's, outcomes and carefully planning how to get through a crash landing like this. The mind can think multidimensional novel chapters in nanoseconds. I ran through several options of how to correct what I said without drawing attention to it upsetting my Southern Christian, quiet mom who sings in the church choir.

Gosh, out of all the people I make this mess up to. She was so quiet about it I thought, whew, she doesn't know what S&M is. I decided to correct it by saying the things I practiced with my friend and end the sentence correctly in same calm tone rather than correcting my mistake which would bring attention to it and then having to talk about cognitive challenges with M.S.

So I continue, “and it's OK. There are support groups, community and lots of help with ” [remember, remember, think, M&S runs through my head, then I mentally run through it again dropping the &. ] “M.S.” It's amazing I could do that much thinking while saying the sentence, so no pause before saying the word. I said it smoothly.

Now what can I tell her next, oh the books I have read about M.S. “There are many informative books at the library that talk about cures, treatments and living life with it.” Then suddenly I remember a scene from the original 9-5 movie when the newly divorced character played by Jane Fonda sees her x husband and to show how much she's changed and is a different woman, she states “...now I'm into M&M's,” not really knowing what she's talking about.

Remembering this scene makes me want to laugh. I feel it in my throat like a slight vibration, I swallow and try to suppress it. In the suppression of laughter and continuing to speak my voice gets tight and a little higher pitched. I can feel the tickle of laughter tempting my throat as I try to continue with my calm soothing attempt and say, “there are friends, people to call and web sties.” My voice is noticeable different. What if she thinks I'm really upset and about to cry. Darn my plan to keep her and me at this point calm is not going as smoothly as I practiced with my friend. Trying to suppress the laughter causes me stress, telling her I have MS is stressful and stress is bad for M&M's...I mean M.S.

OK reclaim my calmness and confidence that this is going OK.

“My life isn't over, it's just changing. It will be OK.”

If you could see past disability

by Mary K. Mennenga

To see the person

Who isn't willing to quit or given up

On living life, hope and love

Life is about

Making the most out of what I've got to work with

It's not about what I can no longer do

Instead it's learning new ways of working within the limitations

Living life has brought to all of us

Pride is a force that will need to be dealt with

It's one of the things that can defeat anyone

Remember I'm are still in control of my choices

Will I make mistakes of course that's how most learning gets done!

All I ask is your understanding that

If the reason you're helping is because you think you have to?

That kind of support feels more like pity to me

Instead of being something you want to do with me

Honestly pity is just another form of guilt

That has nothing to do with me

Walk This Way

by Kim Dolce of Doc, It Hurts When I Do This...

Long before we girls leave the crib, we sense that boys watch the way we move.

Once we become ambulatory the game intensifies. Puberty attaches language to this preoccupation as girls learn whether guys are leg men, butt-watchers, or hypnotized by hips. In adulthood, women discover the power to influence an admirer with a simple movement. We choreograph our own signature dance. Fully in control of our youthful bodies, we emulate the panther, the gazelle, our favorite Motown group, or in a goofy moment, a decrepit great uncle.

Developing MS is a real game-changer. When I added foot drop to my choreography, I felt clumsy and unattractive. Augmenting my routine with a cane was the finishing blow; a cane did well by Fred Astaire and July Garland, but I don’t sing “Swanee” or tap dance on ceilings. I gave up on grace and worried about tripping or falling. My dance morphed from jazzy Gwen Verdon to Chevy Chase doing Gerald Ford. Convinced that men observed this with either sympathy or disgust, I abandoned my desire to be desired.

One day, I noticed my husband, Mark, standing behind me beaming lasciviously.

“What are you looking at, you silly man,” I asked.

“You,” he said. “I love the way you walk.”

“Limp,” I corrected, “I don’t really just walk anymore.”

“It’s a geisha two-step,” he observed. “You take these feminine little mincing steps and then swing one hip. It makes your butt look great. You’re so hot.”

I peered suspiciously at his face, searching for irony. But he was still looking at my ass with that unmistakable gaze of desire.

He seemed to sense my overall low opinion of my physical affect in society. “I see how men look at you when we’re out in public,” he went on. “They can’t take their eyes off you. I know how men think, honey. You don’t even see it—and that’s the beauty of you.”

The geisha two-step. I do still have a dance. Maybe not the one I was hoping for, but it’ll do.

connection…

from erin jennifer griffin

after a rough week my friend, Lori, reminded me about patience today.

I realized this morning that I have been denying patience with myself.

a lot.

all the time, in fact.

Lori says “the opposite of patience is anger.”

that caught my attention. fast. goosebumps.

I started mulling this over and realized that I have been angry at my body for most of my life: there has always been something wrong with some thing God gave me.

I can count on both hands and feet the number of things I don’t like. from my nose to my toes.

and now, there’s even greater reason to lash out at my physical body: it hurts, it buzzes, it won’t move the way it used to move…or the way I want it to move.

my body is fighting back. at me. finally. and in a big way.

wow.

need to do something about this. my husband always asks me how I can see beauty in everything, everyone around me, in people I don’t even know, but not in myself?

I don’t have a good answer anymore.

intentions for the week: become my own thought watcher. interrupt when necessary. rest until it’s time to play. play until it’s time to rest. repeat. get out of God’s business.

Living Fiercely

by Nadja at Living! With MS

I still vividly remember a time during the first year after I was diagnosed where life was colorless-- all just a bunch of "what ifs" and struggle to survive. I also remember talking one day with my then husband, and realizing that I no longer had any real dreams or desires. Everything I did was somehow based in fear. I worked so I could pay my bills. I rested so I could be well enough to work, and I fought tooth and nail just to keep what I had--continually wondering if it was even worth the cost to my physical and mental health. He asked me about my bucket list and I was painfully aware that I didn't even have one.

Fast forward three years from that moment... I find myself in an entirely different state of mind. I work to live, but i don't live to work. I still work hard but I am prioritizing my activities. It can be all work all the time so now I go to aerial dance and fantasize about joining the circus. I have stopped saying no to every invitation and every activity outside of my job. I am about to turn 35 and I have a bucket list that is alive and well. My new priority, having fun doing things I love.

Last night I crossed a new item off my bucket list when I performed my first aerial dance routine. When I came home and looked at the photos, I told my roommate, "I look fierce." I love feeling like a bad ass :) If MS has taught me nothing else, "Carpe Diem."

This concludes the 100th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 10, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, November 8, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #99

2011-10-13T14:42:00.001-04:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Parking with MS, It's Not Always MS, Living Drug Free, Grabbing Life

Marking Time With Parking Permits

by Lisa Emrich of Brass and Ivory: Life with MS and RA

As is true for many who are newly-diagnosed, my first year after diagnosis was full of learning experiences. I had a significant relapse that created a need for months of occupational therapy to regain use of my fingers on my left hand. I had another relapse only months after diagnosis and underwent the 5-day Solumedrol treatment twice in one year.

Another thing which happened only one year after I first joined the neurology clinic was that I began tripping. I fell on our stairs a number of times, leaving bruises on my shins. I fell on the sidewalk outside. I was having doubts as to my ability to walk any distance at all, for good reason.

It was early October and the weather was turning wet and chilly. My neurologist suggested that I get a handicapped placard. (Actually I had asked him about getting a placard during our previous appointment, but that was before I told him that I had fallen several times.) He wanted me to be safe. He didn't want me walking on cold, wet (and soon to be icy) sidewalks while tired. That last thing we both wanted was for me to slip in a crosswalk and be hit by a car.

So in October 2006, I applied for my very own disabled handicapped parking permit. In the state of Virginia, these permits are valid for five years. This past week I received my renewed parking permit. Somehow seeing the new expiration date (October 2016) on this valuable piece of plastic makes me realize how long I've been living with MS already.

On one hand, not very long at all. On the other hand, the next time I have to renew my parking permit, it will have been more than 16 years since I first went blind. Just made me stop and think.

When is it Time to Get the Blue Placard?

by Christie of The Lesion Journals

I knew it was only a matter of time before I made a very important decision. To do the handicap placard or to not do the handicap placard. That is the question. I have been wrangling with this one for some time, always coming up with reasons as to why my perfectly (dis)abled body does not need to be rescued by a privileged parking space. That’s how I see it. Here’s why.

First, my symptoms are never that bad. At least that’s what I’ve always told myself. I can park in any spot in the parking lot of Bed, Bath and Beyond and capably walk to the front door. This always leads me to my second point, which is that I really do not want to take a handicapped spot away from someone who needs it more than me. How on earth would I be able to live with myself if I drove my car atop the asphalt spot painted with the universal disabled symbol and actually took it from someone else? I am not sure I could live with the guilt of stealing a spot when I feel perfectly fine. This line of thinking always ends with the forever silent, unmentionable realization that I am a disabled person who might need assistance one day too.

Nope. Not this MSer. My third point I always think is a strong one. I need the exercise. Walking. Walking is good exercise. The farther out I park the car, the more exercise I will get. I often reason with myself. I do not need to shrink my already limited exercise routine by decreasing the steps per minute that would come from parking so close to the entrance of the mall. Ha, ha! Good one.

Lastly, the place where I need assistance the most is at work yet I adamantly tell myself that I am not ready to come out with my diagnosis to my office mates. Parking in the handicapped area will clearly force me out of the MS closet. I know what you’re thinking, ‘o readers of mine. How much of a secret could it really be if I write publicly on this blog? Minor detail. I remain inflexible. I cannot get a handicapped placard. Everyone will notice me stepping out of my car parked in the blue zone right in front of the office building entrance. It will be so immediately obvious. There is no way to avoid it. Everyone knows what kind of car I drive and they do not have a clue that I live with MS. I always ask myself questions. How is this going to work? Am I ready for this or should I dream up a story that I am recovering from a very serious bike accident? People will believe me, right? Yes I realize that keeping up with a story like this will be difficult and has the potential of getting completely out of hand as I will be forced to describe every elaborate detail of my crash. Besides, I can’t wear a fake cast forever. On the other hand, parking is so limited at my office that many of us are forced to park on a dauntingly steep hill that is an exercise routine all in itself. 300+ steps from the office front door to the top. I counted one day. I still conclude and tell myself: more points to add to my third reason above if I don’t get the placard, right?

This all changed with my recent relapse. Just last week my MS took me by surprise and rewarded me with new numbness, from my waist down. Not full numbness but enough to give the impression that I should probably stop drinking at noon. This is when I decided it was time. I wrote it down on my task list: fill out DMV form for disability placard. I will let you know how my first parking experience goes when my pretty blue placard arrives in the mail. Stay tuned.

In the meanwhile, I am sure many of you have had similar experiences. I would love to hear from you, to hear your story. How was your experience in getting the disability placard?

It’s Not What it Seems

by Laura of Inside My Story

A recent conversation with my daughter went something like this:

Daughter: (looking worried) Mom, are you alright?

Me: (puzzled) Yes, why?

Daughter: I’m worried about you.

Me: Ok, why?

Daughter: Because you put boxes of macaroni and cheese in the freezer.

Me: (laughing and very tempted not to explain) Relax, I’m not losing it. I know I put it there because I’m trying to conquer some moths that have taken over my pantry. The pasta is safe in the freezer.

Daughter: (looking relieved) You had me worried, I thought it was your MS.

Now first of all, remember that tip because if you ever get those moths that want to take over your boxes of cereal or other dry goods, the freezer is the best hiding place to stash their favorite grains.

The second point in sharing this episode is it illustrates how it is entirely too easy to worry and identify all unusual symptoms and behaviors as being connected to my MS. So many times I think this MiSerable disease is acting up, only to slowly realize it was something entirely separate and unrelated.

My right foot great toe had a problem a while back and the podiatrist treated it as a neuropathic pain, complete with a compounded formula gabapentin cream to put on it two times a day for several weeks to quiet the nerve. It solved the problem and that toe hadn’t bothered me for over a year when suddenly last week the same toe was back to throbbing. I hobbled around on it, assuming it was my MS once again. I was cursing myself for throwing away that jar of leftover cream. I was pleasantly surprised when on day three of agony, I discovered by trimming my nail the pain went away. I was working on an ingrown nail, but had assumed it was my MS.

Do you and your family just jump to the conclusion that your MS is to be blamed when problems arise? We sure do in my house. It’s much too easy to do when MS is a constant companion and a source of so many problems.

Macaroni in the freezer? Ingrown toe nails? Sometimes it is good to have an explanation other than it’s my MS; it takes the blame way too often and it’s nice to give it a break.

PTSD: A Head Case Study

by Kim Dolce from Doc, It Hurts When I Do This...

I think I'm suffering from PTSD. No, the other one: Post-Tysabri Stress Disorder. Having stopped Tysabri in April, I have gone "bareback" ever since. Risky behavior, you say? I'm fine. Really. No hospitalizations, one little flare in July, but prednisone knocked it out on the first dose. No harm done.

I've tried to approach managing this disease the way I approach writing. I always try to write to my strengths. Hindsight is one of my best. I have a good memory and an organized thought process equipped with a bad-ass editor. It's come in handy for story ideas and doctor appointments. Procrastination and intellectual laziness are up there, too. If I get tired of doing research, I use what I've learned and then wing it.

Decisiveness is a strength that has always taken the number one slot. I boldly go where most writers have gone before--but with my own little twist. Like Ishmael in Moby Dick, once a poet who took to the sea, I saw this as an adventure, something I could embark upon thoughtfully and report on as both observer and participant.

Taking Tysabri was a risky decision since death was a possible outcome, but was I intimidated? Nah. Others had gone before and lived. The decision to stop was even easier, but met with a little more resistance by professionals. I have been stubborn and taken charge of my quest for the ideal monster weapon--and come up short. My thoughtfulness has given way to single-mindedness and not a little paranoia. Now I am like Ahab, scarred and crazed and poised on the foc'sle, harpoon in hand, waiting.

It isn't that I don't have choices. There are Gilenya and Novantrone. But I've developed a prejudice towards immunosuppressants. I could have my veins roto-rootered in Albany--but I don't even know if I have restricted veins and I'm too lazy to see a vascular radiologist to find out. The main thing is, I don't really believe any existing therapy is going to be the charm, just as I believe that neither Copaxone, Rebif, nor Tysabri did me one lick of good.

I know I'm not alone. The problem is that the choices beyond the CRABs are so new that there are no long-term studies showing how they might trouble us down the road. The new drugs dazzle like high beams on a Mercedes, and I'm an over-the-hill deer that has no business standing in the middle of the road at night.

Before the metaphor police show up, let's get back to Ahab. There's something missing. Crouched at the foc'sle, harpoon in hand, waiting for that chalky mug to break the surface; what am I waiting for? Not the monster, I have no fear of that, it's been taking small bites out of me for years. Now, for the first time, I'm empty-handed.

I wait, crouched on the foc'sle, peering into the mist, searching for the biggest, baddest (but safest) harpoon insurance can buy.

Learning To Live Again With Multiple Sclerosis!

by Nickey at Multiple Sclerosis And Our Battles With Autoimmune Disorders

WOW! Things have changed since I last posted. Have you found yourself in a slump or depressed telling yourself everyday "tomorrow I will do it" or "tomorrow will be better" but it just doesn't happen? I was there! I was stuck in what I call my funk. I woke up one day and said "NO MORE". No matter how much it hurts I will Learn To Take My Life Back. You see, I had let Multiple Sclerosis take my life from me but not anymore. It was like I was stuck inside myself screaming to get out.

It all started back in October of 2010 when I went in to my local general practitioners office just to get my pulse and blood pressure taken. After sitting for 15 minutes with no movement they came in and took them both. The poor nurse nearly fainted and did it again then ran out of the room. She came back with a wheel chair and said "your doctor wants you in the Emergency Room NOW". After lots of IV fluids and medications to get my pulse and blood pressure down they admitted me for all the wonderful testing. Thank God I wasn't having a heart attack. See we lost our father when he was just one year older than me now at 34yrs old of a massive heart attack.

After being admitted they did all the stress test. I barely started the stress test and they hurried and got me off of there b/c they just knew I was going to have a heart attack. After that hospital could not figure out why this was happening they transferred me to another, bigger hospital in the Cities. This hospital just knew I had what my fathers fate was. They then decided I had to have and angiogram to see if my artery needed to be ballooned. Come to find out my arteries were as clean as a new born baby.

During my stay in the hospital a picture was taken of me. At the time of the picture I was shocked to say at 5 "8" I weighed 290 pounds. When my mother seen me she told me "Nickey, if I didn't know it was your truck you were getting out of I would have never known it was you". She didn't even recognize her own daughter and neither did I. This picture did something to me. I didn't know the person I was looking at. I stared at myself in the mirror and had no idea who that person was anymore. I didn't recognize her. I was over medicated, over weight, depressed and ready to give up. Through my faith and looking at my little boy who needs his mommy so bad I said once and for all "NO MORE!!"

That day I started taking my life back. Without telling anyone of my plans I started my journey. I began by doing a complete lifestyle change by getting off of all those medications I didn't need to be on and eating the healthiest foods I could find. At first I couldn't add any exercise b/c I was at such a weight were just walking to the kitchen would cause me chest pains. I had also found out that one of the meds they put me on caused depression so I immediately got off of that one and OMG did the clouds clear. I could think again! I could live again! I could Love again, not just others but MYSELF!

I was so overweight that my cholesterol was off the charts. They couldn't even calculate it. My blood pressure was crazy high and my blood sugar was on the brink of me being a diabetic. Just from changing my portions and what I ate I lost 60 pounds. After the 60 pounds was off I began exercising to get my legs working again. I am happy to say that I am now down 80 pounds and weigh 210. My goal is 150-160. So I still have some work to go.

I now juice all my fruits and vegetables, which is so good. I also upped all my vitamins. I had my labs drawn again and I am happy to say that everything came back perfect. My blood pressure is perfect, my cholesterol is perfect, my sugar is in the normal range but a little high. I no longer eat meat unless it is turkey or fish and eat or drink lots of fruits and veggies.

My latest add on to my journey has been getting a recumbent bike. All those spasms I was having in my legs are now cut in half if not more. I make myself do a minimum of 30 minutes a day and if I am having a good day I do an hour. My energy is up and I am feeling better. Don't get me wrong MS'ers I still have all the wonderful pains and aches, fatigues and struggles that come with MS but life is so much better. For the first time in 4 years I feel like I am living again. You see it's all in how you look at yourself and were your mental status is.

With all this said I want you all to know that no matter your weight or if your in a wheel chair or using a cane like I was YOU CAN DO THIS. Never give up and always push yourself to do something everyday to make yourself feel good about YOU. It can be something as small as looking in the mirror and saying to yourself "I love myself and like loving myself". If you feel lost or hopeless remember you are never alone and Never Give Up. I am a spiritual person and I believe through mindful breathing, meditation and pushing ourselves past that mental block we can get our lives back. Never say Can't but always try.

To all my readers out there we may have never met or may not have even spoken with one another but please know you are not alone in this battle called life. Life is so much better when we fight for ourselves. I will be writing more about the juicing and bike riding.

With Love and Hugs NEVER GIVE UP!!

This concludes the 99th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 27, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, October 25, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #98

2011-09-29T18:05:00.002-04:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Eager Bladders, Fatalistic Humor, Caregiver Survey

I. P. Freely

by My Odd Sock

Nah, this isn’t about the work of legendary folk-lore author, I. P. Freely

It’s about bladder control pure and simple. Or lack thereof in regards to many of us with multiple sclerosis.

You see, most of the time I HAVE bladder control. This is about the times when my bladder controls ME! Like a loyal dog to its master, when it goes–I go!

My problem usually occurs in the morning when my eyes are bloodshot and my bladder is brimming like a cup of Maxwell House.

I do my quickest spasticity-induced, “quasi-shuffle-foot drag” (Government moves faster!) into the powder room. But it isn’t quick enough for my seemingly ping-pong ball sized bladder.

Typical view of preferred potty distance.

Vicinity when my bladder opens flood-gates.

Because my bladder likes to get a jump start on the day as soon as I cross the threshold of the bathroom. (In Track & Field, this is known as a “false-start.”)

Needless to say, my day begins with damp UnderRoos. (Stealing the slogan from Folgers….”The worst part of waking up is urine in your lap!”)

My sometimes accidental basement bathroom.

But the bathroom isn’t the only place where yours truly has had bladder issues…outside in the yard…in the basement…in the shower–wherever I suddenly find myself far enough away from the potty…and not enough leg umph to get me there!

My problem seems to occur when I wait too long. Then, when it is too late–I have to go–and go NOW!

Luckily the urge has never struck when I have been in public.

I’m sure you can relate to urgency mishaps. Do they happen to you? Are you prone to have problems any particular time of day? Ever have an accident in public?

Please share your story in a comment. Your words will have me sitting on the edge of my (toilet) seat with anticipation!

So I doubt the work of I. P. Freely will ever match the popularity of a James Mitchener, Stephen King or J. K. Rowlings, but the impact of the author’s words influence nearly everyday of my MS filled life.

Why the long face?

by Andy of our lady of the multiple sclerosi

New Neurologist: The First Visit

Props:

Projected Sign: No Eating Nor Drinking While in This Office (We’ve had too many spills!!!)

Table

Eyeglasses

Hospital Gown

File and pen

Neurologist (writing): “Do you have any problems with your eyes?”

Me (seated – table): “Not yet.”

Neurologist (writing): “Do you have any problems with bladder, bowel control?”

Me: “Not yet.”

Neurologist (Removes glasses, looks up appearing exasperated already): “You really shouldn’t be so fatalistic. Any problems swallowing?”

Me (pausing): “No.”

Perfect Chicken Broth

by Whitney at Nutrisclerosis

Use 1 whole chicken don't forget the feet. Cut the chicken up, put the whole thing in the stock pot and just barely cover it with water. Add 2 Tbs. of apple cider vinegar and let it soak for a half an hour to an hour. The chicken should be truly free range, preferable raised by someone you had a face to face conversation with about it's eating habits (lots of grass, bugs, lizards, seeds, snakes, and corn with no rat or mouse shit in it) and habitat. Also no hormones or antibiotics. I am very much into finding delicious heritage breeds like Dorking or Rhode Island Red. Ok, moving on.

Bring to a slow boil all the while adding: a slice of lemon (I use the end about a third of an inch slice), 2 bay leaves, salt, pepper, 1/2 cup of fresh parsley slightly chopped, 1 or 2 carrots, 1 onion, 1 or 2 stalks of celery, 3-5 cloves of garlic crushed. Once it boils, turn down to low and simmer for 2 hours. Skim the scum.

After 2 hours take the meat off the bones and put the bones back in and simmer them for another 20 or 30 minutes. Turn the heat off, let it cook a little and then strain it and throw all the chunks out. That's it there's the broth. Don't skim the fat off it when it cools. Eat the fat, or skim it off and use it to cook something else. Or give the fat to me, I will use it. I use the meat in recipes, and usually freeze it. I also triple this recipe and make it in my giant zillion quart stock pot.

MS Caregiver Survey

I (Lisa) received the same following email asking me to post this survey in the Carnival, but Patrick went beyond the call of duty. Read his post below and complete the survey before October 21, 2011.

[Patrick] Received an interesting email:

“Dear Patrick,

We, the Southeastern Institute of Research (SIR), are conducting an important research study on behalf of the National Alliance for Caregiving and the National Multiple Sclerosis Society. The study includes a survey that investigates issues related to caring for someone with MS and the needs of family and friend caregivers. Would you be willing to post a link to this important survey on caregivinglyyours.com? …”

www.sirresearch.com/MScaregiver

For those who know me well, know I live and learn by questions. Noting a name and phone number at the bottom I called Heather Marron, Project Manager for SIR. She is indeed a real person and patiently fielded my questions.

More importantly I took the survey. It takes around 15-20 minutes though you can always save and return. It passed all scrutiny by my AVG anti-virus and anti-spyware defenses; ever the ‘doubting Thomas’ I also ran Spybot upon completion of the survey and it too found no prying eyes left behind. No name or contact information is requested, as anonymous and confidential as anything can be in this age.

Most importantly it really is an extraordinary survey. I’ve never seen anything like it and long overdue when it comes to trying to study us extremely diverse and unique MS caregivers.

“Responses will be combined with those of other caregivers and will be shared with the National Alliance of Caregiving and the [National] MS Society so that they can learn how to better meet the needs of those caring for people with MS.”

Please note you must complete the survey by Friday, October 21st and “for the purposes of this research study, caregivers are defined as family or friends, not professionally-paid caregivers.”

Of course if you have questions (and believe me I understand) Heather said it was fine to pass along her contact information: Heather Marron, Project Manager at SIR at hmarron@sirresearch.com or 800-358-8981 (ext 28) … or Anna MacIntosh, SVP of Research Operations at SIR at anna@sirresearch.com or (800) 807-8981 (ext. 18).

Take it and spread the word!
Caregivingly Yours, Patrick Leer

This concludes the 98th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 13, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, October 11, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #97

2011-09-15T16:34:00.001-04:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Sleeping Legs, MS Faces and Awareness, RX Yoga

Pink Kayak Blues

by Karen of Meandering...One moment please

Photo courtesy of Hubbers

One of the best things about vacationing at the lake is kayaking and canoeing. I have always enjoyed both. This year was no exception! There is nothing quite like gliding along the water silently, taking in all that nature has to offer.

As my mobility is somewhat stilted on land now, it was exhilarating to travel quickly across the water so effortlessly. I once again felt in control of how my body moves. I felt totally able bodied, and free from the limitations that disease has imposed on me.

I zipped around the bay and paddled out on the big lake for about an hour. As I headed back to the cottage, I noticed that I no longer felt any pain in my lower back or legs. The transverse myelitis plagues me with a considerable amount of pain most days. Wow, kayaking and nature surely is the best medicine I thought!

As I beached the kayak on the rocky shore, the excitement of being pain free slowly turned to concern, when I realised that I couldn't feel the rocky ground through the underside of the boat. Not tending to be an alarmist, I continued to maneuver the kayak to a stable resting position so I could climb out.

If you've ever been in a kayak, you know that the only way out, is to pull yourself up, back, and out from the tiny opening. It usually works pretty good by using your legs to push against the front of the boat, as you lever yourself up with your arms. I kept trying to hoist myself from the confines of the small space where my legs rested. It wasn't working!

I couldn't get out of the boat! I couldn't get out because I couldn't move my legs at all, nor could I feel them! There was no one down at the dock, and the cottage is a considerable way up the hill, so calling out for help was useless, because I wouldn't be heard. It was about at this point that the panic set in.

There I was, stuck in a little pink kayak, numb from the waist down, with arms flailing, while making bizarre squawking noises. Thankfully the scene was eventually noticed by Hubbers, who was on the upper deck sorting out his fishing tackle. I think the squawking noise was what caught his attention.

He managed to haul me out of the little pink prison, and settled me on the sand, where I laid like a beached whale. Convinced that my legs had just "fallen asleep", I protested the urgent suggestions that we should take a trip to the nearest hospital, (which wasn't that near).

After a while laying flat on my back, searing pain started shooting from my toes up to my hips. Well, this was surely a good sign! Pain equals feeling, and feeling equals not paralyzed. I regained almost full feeling in both legs, (along with full pain) over the course of the next few hours.

The doc said that the angle of my legs in the kayak, put pressure on the spinal cord, smack dab in the area of the cord that has already been damaged by the TM. That pressure in turn compressed the cord further and caused the temporary paralysis.

There you have it... I knew my legs just "fell asleep"!

To be on the safe side, I have scratched kayaking off the list of fun things to do up at the cottage!

The Real Face of MS

by Laura of Inside MyStory

Do you grow weary of hearing the inspirational tales of people who have MS but still conquer the world?  Do you have trouble identifying with the athlete who just ran, swam or biked across the world in the face of MS or the person who climbs into the ring with a raging bull and emerges with the championship belt? The list of motivational speakers includes a wide variety of talents and skills and they mean well, but it can be difficult, if not impossible to relate to their message.

It’s a mystery why this disease affects all of us differently and I don’t begrudge those people who appear to have benign Multiple Sclerosis – that mild disease that may not even need to be treated. Kudos to them being able to continue living life to its fullest, setting lofty goals and working hard to achieve them and I certainly don’t want to take away from their successes, but I have trouble relating to these super-patients.   Their normal of living with Multiple Sclerosis doesn’t compare to the normal of the numerous people I know who have this same disease.

The best human interest stories and inspirational tales for me don’t come from the globe-trotting, super achieving people with MS.  The real people living day in and day out with the struggles make the most inspirational witnesses to the human condition of living with Multiple Sclerosis.

Let me hear the experiences of the primary progressive MS patient who regularly lobbies on Capitol Hill in Washington, DC, to keep awareness of our needs in the limelight for legislators.  Now this is someone I should wish to emulate.

How about the single mom whose partner decided to leave rather than stay in the trenches with Multiple Sclerosis?  Recently I heard that 70% of people living with MS end up divorced; how do those people who are left alone, often with children to raise, manage?  These people only have themselves to rely on for their daily needs. There has to be a tale or two about their highs and lows that would inspire me to not give in to this monstrous disease and its unfortunate side effects.

Or maybe I can learn important lessons from the person forced onto disability from their dream profession, because MS doesn’t discriminate and strikes people from all walks of life.  What does it take to maneuver the maze of assistance programs when you lose all your assets and your identity to this disease?

There are as many stories as there are people living with MS; they may not all have happy endings, but there are lessons to be learned from all. Life with MS is not a happy fairy tale, but more like one of those tales from the Brothers Grimm, where life is often cruel. Give me the real life stories of emerging from the dark side of MS with new direction and a sense of purpose.

What Is Our Role?

by Judy of Peace Be With You

We MS bloggers
comprise a small percentage
of those who are ill.

Are we a voice
for largely silent people
who need to be heard?

What is our role?
Just simple self expression?
Must we advocate?

Marathon Not Sprint of MS Awareness

by Diane J Standiford of A Stellarlife

As I have aged (like fine wine, uh-hem), my need to make people aware of multiple sclerosis has increased. Funny, but I expected the opposite. As my own knowledge and experience grew, MS became a bigger unknown to my worlds.

There was my work world. I was only in my thirties and full of energy! I started a disability group for employees (not ONE member had MS). I explained about MS while riding my scooter to city council meetings, to jury duty, on buses, in Starbuck's across Seattle! Then I moved to an enclosed community in gay-Seattle and began my awareness quest there. My struggle to get around with my cane was epic, and it led to many discussions about MS. I fought to make the public restrooms of my mixed retail apartment building accessible, I wrote letters to the theater chain asking for isle rails, I met with city sidewalk engineers to fix broken ramps and install new ones where needed. MS, MS, MS

By my fifties I moved to a retirement community, average age 85, and my energy for all this awareness making has run flat. Not a day goes by when eyes do not look at me in my power chair and wonder, "WHY is SHE here? In THAT?" I have considered a hand-out, the book with one of my short stories about MS located in the library here apparently is not sufficient. (Though the first one I donated was stolen, causing a bit of a brouhaha, so some residents actually wanted to read it...)

Shocking to me how many of this age group are so unfamiliar with MS. Keeps me wondering who is doing any MS Awareness for us? A once a year walk just isn't enough, and what does that do? It shows people laughing, walking, maybe a power chair here and there. But mostly a party atmosphere---how are people learning about MS from these events? (Sponsored quite often my at least one drug company.) I remember the one I went to. Finding transportation there was a joke, and the volunteers tossed me a T-shirt, "You can put this on over your shirt."

When I said I couldn't lift my arms up, they looked at me like I was an alien. Good grief. I ended up leaving after they couldn't find a place for me to sit and were having so much fun laughing among themselves about a movie they had seen...well, I just zoomed as fast as I could in hopes of catching the ne'er-do-well Access Van service before it left.

So, it seems I will be spending the rest of my life supplying MS Awareness. Fifty years ago, I am sure some other woman with MS spent her life doing the same thing. Though, when I was five years old I was hearing about MS from TV ads, magazine ads, radio, "MS. The crippling disease of young adults." A few more of those ads would make my task a lot easier.

Fist pumping with Dr Miskin

from Melissa's Madness

That was my Facebook status yesterday. Was I really jumping around the office with my neurologist with fists in the air? Uh...no. Actually the very thought of it almost makes me drop to the floor hysterically laughing. All kidding aside, my routine appointment went well. I am set up for an EEG and MRI. He did say that my strength is good, but after watching me walk, that my balance is a little shaky (which now that I think about it, I did notice). I asked him if he could recommend anything specific to help with that. He said going for walks (duh) and doing yoga-esque balance exercises. Here's the thing. Years ago I attempted yoga at home and didn't like it. Now, like I said, this was years ago. Pre-Alison...Pre-MS diagnosis. I think at that time I maybe got bored with it, but to be honest with you, I only did it for a week at most. With my mind-set nowadays, my doctor is recommending it, so I'll absolutely give it another shot. At this point, I'm just glad I didn't get another prescription written out for me. I stopped at Target yesterday (shocker) and purchased Jillian Michaels: Yoga Meltdown, so we'll give it a go. He also wants me to continue the strength training I have already been doing.

OK...yoga time. Fingers crossed this goes well.

UPDATE 11:50 AM: WOW!!! That was so much different then I remembered!!! I really liked it! Alison just told me that I'm "sweaty and gross" so it must have been a good workout. ;)

This concludes the 97th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 29, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, September 27, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #96

2011-09-01T14:35:00.002-04:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

The Hurricane which is MS

You being you is amazing

by Mary K. Mennenga

When what you can do is stolen from you

The mix of emotions felt are different for each person

That learns their life and all plans made

May need to be changed or at least need a lot of adjusting

The future has become a question mark

What hasn't changed is your heart, spirit and love for life

Your not one to give up or quit when things get tough

Learning it's name M.S. gave you a power over it

Because you knew what it could and would do

M.S. didn't know the kind of fighter you are

You knew the fight was against M.S.

Not you!

What it took wasn't who you are only what you could do

You are much more than just that

Knowledge is a powerful tool when the fighting must be done from the inside out

Having limits isn't something you've had to deal with until now

Handling this isn't easy when it changes

One day you can the next your body fails it's not your fault

You know what the real reason is and it's not you

Getting people to understand does not always happen

Now all plan's made are tentative to limit misunderstandings

This is when we see how strong you are as you battle M.S.

Yet you still manage to take care of the people who love you

Of course you may not see it that way, your looking outward

We are looking in seeing your heart

That is the most amazing part of you being you

Like A Hurricane

by Gracie's Mum

August is usually the hottest of the summer months in Halifax. This year though, with the rainiest and coldest summer in years, we’re only just now seeing August in its true form.

The warm August winds, although great for drying clothes hung on the line, means only one other thing: the Atlantic hurricane season is upon us.

The most famous of them all to hit Halifax was 2003’s Juan.

With only days to go until our wedding, my sisters got on a plane, before the closure of the airport and made it to Ontario just narrowly escaping Juan’s wrath.

The worst hurricane to hit the Canadian Atlantic coast, Juan was responsible for acres upon acres of damage and destruction, including major natural landmarks, provincial parks, and for the death of a rescue worker.

There have been several hurricanes since we have lived here. In fact the year we did move here there was what seemed to be one after the other after the other.

And although there weren’t many that hit land, last year was still no exception.

In August of last year we were walloped by a doozy that left us without power for 2 days.

Not terrible if you are in the city, but in the country, when you have a well supplying your water and the well pump runs on electricity, you better have remembered to fill the bath tub with water to assist in the flushing of the toilet. Also, it doesn’t hurt to fill up on bottled water for not only drinking but brushing teeth. And forget about showering, you just get used to sponging yourself down with tepid bottled water.

Good times.

By the second day of eating all the dairy we could handle in advance of it spoiling in the powerless fridge, we gave up and went out to the pub for food since they were one of the few with power in our area.

As we drove around we saw downed trees, power and cable lines and a lot of debris strew over the streets and yards.

It wasn’t the worst of storms but it was a big one that’s for sure.

Hurricanes, although everyone is aware of the season, are for the most part unpredictable.

Yes, you know if one is barrelling toward you, yes you know how fast it’s approaching and we all know there is even a measuring system to predict its strength and force.

And we know that they’re given names and because of that we’re able to remember how bad some of them have been.

But none the less, the actual damage is unpredictable.

Nobody ever knows if the spindly tree in the back yard that should have been cut down years ago will find itself slamming into your roof or front window. Nobody ever knows how high and damaging the waves will be this time. And no one knows how long the power will be out and if they have enough supplies in case the effects of the storm last a really long time.

And nobody knows why this time they were hit or why they were spared.

Living with MS is much like hurricane season.

All year long.

Nobody knows why some people develop MS while others don’t. Nobody knows why some people have mild cases of relapse-remitting that remain in remission for years.

Nobody knows why some people have faster cycling forms of relapse-remitting. Nobody knows why some with relapse-remitting graduate to Secondary Progressive and others don’t. And nobody knows why some people develop Primary progressive right off the bat.

And nobody has the cure.

And even more importantly, those with any form of MS have no idea when or where the next attack will come and what damage will be left in its wake.

Much like hurricane season, many will be ready and prepared only to be relieved from time to time when not much of anything has happened at all.

Many will face a wrath of nature that no amount of planning could have ever prepared them for.

So what do people who live in the path of hurricanes do?

They live, they breathe, they hunker down for the long haul, they rebuild if necessary only to do it all again.

But very few move away out of fear.

They adapt or die.

So, while I start making longer grocery lists that include canned goods, bottles of water, batteries and candles I am confident in the fact that I too am as prepared as I will let myself be for the next one, which has every chance of being the big one.

And when and if it comes I have but one thing to say.

You better bring it ‘cause you’ve met your match this time.

On The Road Again

by Gracie's Mum

It’s been a long road.

Bumps, hills, sheer drop offs, delays, missed connections, unbearable traffic, and even more unbearable road rage.

And then, then it got a little swear-y.

I’ve been on this road for almost 5 years and a new road is just around the corner.

In October I will go back to work. And my list of goals that I made, what seems like a lifetime ago, in the hospital after my MS diagnosis, will finally be completed.

I have not returned to work since my departure in March 2010.

That is a lifetime ago.

And since going off my first Disease Modifying Drug in preparation for the switch to the new drug I will be taking, I can’t even describe how amazing I have been feeling.

Even in the early weeks of going from three injections a week down to two I noticed a difference in my levels of fatigue, stamina and endurance. Then I switched to once a week, the difference again was incredible. Now, it has been two weeks of being entirely free of that drug and I feel absolutely incredible.

On top of that, I have a house designed to conserve my energy.

I won’t say I feel back to my old self, because I don’t even remember what that felt like.

It’s been a long time.

I have an amazing amount of energy, but not only that, I have confidence where I had none only mere months ago.

A confidence to allow myself to really be me. To live with MS, but to live in spite of it as well.

I’ve found myself daydreaming about long lost goals, finding an increased passion in old hobbies and a want and desire, not because I have to, but because I want and desire, to plan for the future.

To plan daytrips, weekend getaways, family gatherings, parties, and get-togethers with friends.

To reunite myself with my graduate studies, to finish my program and apply what I’ve learned to my current and future career goals.

To have future career goals.

Because I have confidence that my energy levels will not fail me as miserably as they have before.

For years, my head-down-plough-through-this mantra that I rehearsed every minute of every day, no longer seems entirely valid. I won’t forget it, but it’s up there on the shelf that we put things we no longer need right now, but might need one day sooner or later.

I know that I will have MS for the rest of my life.

I know what MS can do without medication to divert its course.

I know now how one of those medications made me feel.

And I have learned from that experience.

I will try different cocktails of medication, exercise, and homeopathic remedies for the rest of my MS ridden life in order to keep this good feeling going.

I need this and my family really needs me back to being me.

And that I can see her, smiling back at me in the mirror, is almost too good to be true.

But to know, to believe that it is true, is even better.

Have a wonderful weekend!

I'm Special!

by Nicole of My New Normals

I see a neurologist to manage my multiple sclerosis. Even though I’ve had this ghastly disease for 11 years now, going to the doctor’s office always leaves me feeing down and depressed. I’m not entirely sure what I expected the doctor to say at this visit, but it was the same old stuff.

Sitting in the waiting room I kept thinking that MS wasn’t in my plans. Those thoughts would usually make me a blubbering idiot. But this time, I remembered some of my own words. I remembered the wonderful comments and support I’ve received both here and from family and friends.

I said before, I am never quite sure what the doctor will say. But that’s a lie. The feeling that I was misdiagnosed is always running in my heart and I thought he’d know. I secretly thought he’d feel that same vibe and would shower a little hope on me. After all, I thought only 2/3rds of the multiple sclerosis population ends up in a wheelchair? What happened to that? I told these statistics to my husband Tommy and he said, “You’re special and make the wheelchair look good.” It’s kind of lame, but I’m a sucker for compliments of any kind.

I thought people, who start out with visual disturbances, like I did, generally do well or at least don’t end up in a wheelchair? What happened to that? Again, all Tommy said was, “You’re special.”

I thought black Americans didn’t generally get this? Well, the gigs up. I’m black and I got it and yes you don’t have to say it I already know I’m special.

Mighty Mouse

I read an article where Multiple Sclerosis Was Successfully Reversed In Mice. Too bad I’m not a mouse.

AAAGGHHHHHHHH!

Somehow, I feel better but I still need a drink!

"Life Interrupted, It's Not All About Me"

by Chris Tatevosian

Book Excerpt:

When I was struggling, my mood was one of nastiness. All my actions had become hidden agendas. My anger and nastiness developed into a learned technique for achieving my hidden agenda. At one point during my marriage I recall my wife saying that she tried to do everything to please me in an attempt to avoid upsetting me. Of course, she told me this so that I would be sympathetic and understanding. As a result, I thought I was being more understanding, but I had also learned that expressing anger was a way of getting what I wanted from her. I was guilty of angrily expressing frustration and hardship likely resulting from the embarrassment of my physical losses such as strength, energy, and simple motor skills. Furthering this problem were the larger culprits: my mental and emotional losses, the loss of my self-esteem, and the development of cognitive difficulties. This behavior became the norm. In my mind I didn’t recognize my relationship-damaging and selfish behavior because my personal struggle to function was all-consuming of both my mental and physical strength. I mean, come on, every simple daily task like tying my sneaker, standing up in the shower or holding an eating utensil became an embarrassing struggle.

Whether we want to admit it or not, the damage to our own egos can cause much anger. Unfortunately, much of it is misplaced anger, and who is the unfortunate recipient of that anger? I’ll take “my wife” for $500, Alex. If someone, somehow, had been able to help me recognize I was acting that way so that I could have changed my behavior and stepped out of that “it’s all about me” fog, my marriage might still be intact today. Having a chronic illness or disability is horrible, tragic, and unfair. If you surround yourself in that fog of misery and self-pity, you may just be involved in a tragic accident, the result of which will be the tragic loss of your relationship, marriage or family.

This concludes the 96th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 15, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, September 13, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #95

2011-08-18T16:18:00.000-04:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Challenges of MS, Stories, Humor, and Hope

MS Really is Bad
by S.S.-O of Multiple Sclerosis and Me

One of the things that helped me come to terms with having MS was that "it's not the worst thing that could have happened"...I'm beginning to rethink that...MS is pretty darn bad...okay, maybe it isn't the worst, but it's up there with the rest of the bad things. i think that what makes it worse than some other diseases is that the cause is unknown, it's unknown how it could affect anyone on any given day, the cure is unknown- there are just too many bloody unknowns.

One of the ways that it can affect us is with bladder control. Some patients may not be able to control their bladders whilst others may not even be able to empty their bladders (no consistency either!!!!) for me, sometimes I pee just because there is a bathroom around - not necessarily because i have to pee, but because there is a bathroom i don't mind using available. I never let it get to the point where my bladder is about to buss because if i get to that point, my ass is grass - there's no holding it for me!

I noticed that every now and again something would happen to me so i said to G, "you ever had to pee, used the bathroom and then u notice after you're done and u leave the bathroom (mind u) that, "shit! i have to go again?" Of course she said no and as usual, we moved on...i chalked it up to one of those things that just happens sometimes i guess. I subscribe to the MS Society's monthly publication and 1 day i was reading it and i saw an article on the bladder control issue and it spoke about patients' not being able to empty their bladders and it hit me, "what the?!?!?! i guess that's what i've been experiencing" i'd never thought that it was the MS - for once i didn't blame it and it actually is to blame. When it happens, it's only at nite - i drink so much water (i always say, the only things i drink are water and alcohol, i don't mess with juice and sweet drink and all the other shit out there) that sometimes i have to get up 2 or 3 times to pee at nite - well when i do use the bathroom and get back into bed to go back to sleep, that's when it give me a nudge and says, "eh eh...we not done yet" so i have to get back out of the bed and head back to the bathroom.

I've had conversations with the MS, "i mean, do u really think that it's necessary to put me thru this???? i mean i have to get out the bed, stumble to the bathroom, pee, stumble back to bed, lie down to start going back to sleep and THEN u decide to let me know that "oh by the way, u're not done yet" so i have to start the whole bloody process al over AGAIN!!!" i mean...really?!??!?! UNNECESSARY walking is not something i ever look forward to; i try to save my walking for when i absolutely must do it and in my book, this situation counts as completely unnecessary and uncalled for.

Don't get me wrong, i still know that my situation is not the worst (for sure) and maybe MS isn't the worst, but it sure is damn bad!!

GRRRRRR!!!

No More Secs!!

Living, Laughing, and Loving Despite Multiple Sclerosis

by Ann Pietrangelo

An Excerpt:

“Your test results are all normal. At this point I would consider the three treatment options we spoke of. There is no hurry in making this decision, but would like to hear back from you in the next couple of weeks. If you have any questions or concerns please call me. Thanks.”

When I was a kid, doctor shows were all the rage on television. I’d seen the pronouncement of diagnosis hundreds of times. The kindly old doctor touches the patient’s hand and looks into his eyes as he breaks the news. He might put an arm around the patient’s shoulder, or comfort the worried spouse. The camera would then zoom in on the patient’s face so we can see the emotional impact up close and personal.

But it seems we’re not going to get our Marcus Welby moment … or anything that even vaguely resembles one.

The email that changes everything lands in my inbox on January 28, 2004, at 2:19 p.m. Just another email mixed with a batch of well-worn jokes and plenty of spam.

The test results are all normal. It is one of those good news/bad news situations. In this case, however, normal does not translate into a clean bill of health. It is in this instant, through this most impersonal exchange, that normal takes on a whole new meaning for me.

The email comes as no surprise. Diagnosis or not, life as I know it has already been altered beyond recognition. Still, the doctor doesn’t actually use the words. The meaning of the email, prompting me to decide on treatment options, is clear … but not clear enough. I want to hear the words, or at least read them. I want and need this diagnosis to somehow be declared official before I make any decisions. This is a very big deal.

The news is, for the moment, known only to the doctor and me. I fantasize briefly that if I delete the email, that if I pretend I don’t know, it won’t be true. If ignorance is bliss, maybe I can simply refuse to accept the information I’ve been given, like a child who ignores her mother’s call.

Until this moment, I could still hold out hope that it was all some colossal mistake or overreaction on my part; just one of those things that happens and is soon forgotten. Sure, I’ve had health problems like everyone else, but nothing like this.

Even while these thoughts run through my mind, I’m aware of another stream of consciousness floating alongside. I consider these feelings as being a normal first response because, after all, nobody plans to be disabled or sick. It’s just the luck of the draw and on this particular day it happens to be my turn to draw the short stick. I was never one of those “it won’t happen to me” types. I’m more of a “why not me?” kind of gal. I always figure I’m as good a target as anyone else, for both bad and good life events. Now, when it’s put to the test, is my chance to see if I truly subscribe to that philosophy.

My fantasy of just ignoring the news is short-lived; the realist in me wins out and I return to the task at hand. I hit the reply button and type, “Thank you. Does this mean I have a definite diagnosis of MS?” I marvel at my own matter-of-fact attitude. I am not about to let emotion rule the day and my stoic New England heritage is firmly in control...

The MS Claw

from A.D. of Everyday Battles

It’s truly an evil disease, this MS of mine. I’ve been using these blog posts to keep everyone up-to-date on fund-raising efforts, the events to ‘give back’ for those who’ve contributed, but I haven’t really given a reaction beyond telling people how thankful I am, how oh-so-humbling this experience has been thus far, how I am elated at the incredible response I’ve received from friends, family, strangers–but I’ve failed to give my own personal, first-person point-of-view of precisely how I feel about all of it. So, indulge me; let me ‘exhale’ on all of it.

I’m scared. I’m scared. I’m scared.

To put it in the right ‘frame’, you need to know that my Father was diagnosed in 1985, a couple of years prior to my entry into the world. As a teenager, I watched my Father’s disease progress–his own personal ‘MS claw’ had a grip, though the speed at which his claw grasped him was entirely different. It was 10 years before we began having to pick him up off the bathroom/bedroom/living room floor and help him get back to his feet. It was 15 years before its talons began to break the skin and draw blood; that is to say, before he had completely lost his ability to walk. He now lives in long-term care, his MS claw never leaving him, its grip only ever tightening as we all look on, helpless, powerless, and impotent to do something, anything for him. This understandably really defined what my biggest fear was.

That, one day, it’d be ME being picked up off the bathroom/bedroom/living room floor. That, one day, it’d be me being grasped, clutched, left scarred and bleeding by my own MS claw. Then it happened. Biggest fear become reality. To my astonishment, the craziest thing happened: I dealt with it. And I continue to deal with it, as the claw tightens and loosens its grasp, I adjust. It never lets go. It has cut me several times. I can’t walk. I can’t type. I can’t contain my bladder’s contents. I have ‘difficulty’ with romantic intimacy (I will allow you, to quote the Immortal Bard, to “take it in what sense thou wilt”–use your imagination…).

But I deal. Everyday. I find it astounding how well a person can adjust to change–we all hate it, most of us, given the option, never would–but when you lay your cards out, drop the ones that serve no purpose, and focus on what matters and what’s important…and hope that you can pick up what you were missing for a good hand, the resiliency of the human spirit can take flight; if you’re as lucky as I am and are surrounded by courage, strength, and lots of good ol just plain awesome. I find it in my family. I find it in my friends. And they’re all pulling at the claw, trying to help release me from it’s seemingly herculean grasp. It’s why I’m still here. It’s why I still believe life is worth living, whether I’m running, walking, or rolling…

But I’m still scared.

I’m scared the $20k+ that my friends, family, et al helped me raise is all for naught.
I’m scared that I may find some relief from endovascular therapy only to watch and feel the squeeze of that claw as it does what it is programmed to do and just keep on squeezing, breaking my skin, drawing blood, leaving me scarred with no hope of recovery.
I figure since my biggest fear became my every waking second…it’s about time I found a new one, yeah?

One might say I’m being melodramatic. And perhaps I am. But despite how irrational it may seem and despite how easily you as an objective 3rd party may be able to poke holes in my fear-theories…it don’t take ‘em away.

The claw’s still there.

Its grip is still getting tighter.

1 month to the day ’til the plane hits the tarmac in San Jose. Until then…1 day at a time.

Despite MS, to Spite MS

by Dan Digmann

I keep telling Jennifer, “This really is going to happen!”

We’ve written our book, “Despite MS, to Spite MS.”

Our designer sent it to the printer on Tuesday, Aug. 2, and we’re hoping you are as excited to read it as we are to share it with you!

“Despite MS, to Spite MS” is a compilation of our essays describing our experiences, emotions and attitudes in living with this chronic disease of the central nervous system.

We were quite nervous and overwhelmed when it first was suggested to us that we should pursue self-publishing a book of our stories. But the more we thought about it, we realized it was a needed step for us to take to increase MS awareness and help people to move forward with their lives.

Guiding the themes of each section are some of the most inspirational and motivational haiku-style poems our friend and fellow blogger Judy Williams has written for her blog, Peace Be With You on the MS Journey. We are so honored to include her in our book!

Thinking back to the day in 2002 when I met Jennifer at the “Finding Your Buried Treasure” event in Frankenmuth, I recall one of the activities where we had to cut out magazine pictures to place on what was to be the treasure map for our lives. The pictures were to be of things that were important to us.

Among the images I included were of a book – something I always had wanted to write –Bruce Springsteen (of course!) a church, and a family.

So here I am some eight years later self-publishing a book that includes essays I needed to receive copyright permission from a Lutheran Church organization and Springsteen to print. And I truly am blessed that I wrote, compiled and edited this book with my wife, Jennifer. Visit the website www.despitemstospitems.com to learn more.

This concludes the 95th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 1, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, August 30, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #94

2011-08-04T09:43:00.003-04:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Good Ol' Summertime

Goodbye Rebif

by Ivy at Life with MS and EDS

In a modest white house,
There was a fridge with blue containers
Stocked with hated Rebif shots
and a woman sick of dealing with…

Evenings wasted each week – three
The need to drink water til the constant need to pee

Heat packs and popping two Aleve
Itchy shot spots nothing could relieve

Shot spots that were also black and blue
Constant fears of waking with the flu

An auto-injector that’s too powerful
A medicine’s whose effectiveness is rather doubtful

Goodbye hate and fear.
Goodbye drinking til my pee is clear.

Goodbye Aleve.
Goodbye time thieve.

Goodbye auto-injector contraptions.
Goodbye injection site reactions.

Goodbye flu-like side effects.
Goodbye mounting skin defects.

Goodbye six full sharps containers that live on top of my fridge.
(Oh wait, I’m stuck with those since no one will take them from me!)

GOODBYE REBIF!

Here I come, Gilenya! Hope you and I get along well!
(Obviously inspired by, “Goodnight Moon”)

No Exchanges or Refunds

by Karen of Meandering...One moment please

You know what I've been thinking lately...

...but it's the only one I have,
so I'm going to have to go with it,
and figure out how to make it fit.

Monsters

by Gracie's Mum

About two years ago Grace went through a phase where she believed that there were monsters in her room.

Not just under the bed, not just in the closet or behind her door.

No, she believed that they came in through the night, from where we don’t know, but she believed in them and we let her and we took the necessary precautions to make her feel confident that the monsters wouldn’t be welcome in her room.

We made a sign.

She couldn’t write or read at this point but she knew what it said:

No Monsters Allowed.

She decorated it and we hung it up on her door so that at night, when it was closed, the monsters knew to turn around and go back from where ever it was that they came.

And it stayed there.

It didn’t come down during showings on the house.

It didn’t come down until moving day morning and only then to be re-hung on the door to her new bedroom.

She still believes that monsters are a threat to her sound sleep. To her security. And although she’s never seen a monster, she knows that the risk is far too great to not hang a sign.

It’s astounding how much adults underestimate the intuition of a child.

It’s no secret that I do not have a spiritual, mystical or religious system of beliefs and that I am an agnostic.

But there is something, somewhere deep inside me, that believes that sometimes things are more than coincidence.

Not more than six months after hanging that sign, I, Gracie’s Mum, was diagnosed with MS.

And, it is in fact a monster.

It goes unseen, unheard, unfelt, for months. But you know it’s there.

And it was.

And it is.

And we live with this monster, the three of us, every day.

It lurks behind doors, at the top of stairs, at the bottom of hills.

It laughs as I get in and out of the tub, daring me to slip and fall.

It nags me and taunts me whenever I walk from a smooth surface to rough waiting for me to lose my footing.

It waits patiently in the dark for the last minute before spoiling a long planned family outing with unexplainable fatigue or dizziness or lack of balance or all of the above mixed together in a toxic cocktail that can only be cured by a few days in bed.

And in spite of all the signs, or ropes of garlic, or crucifixes, séances or exorcisms, this monster, although not allowed, not invited, will still come through every and any open door in our lives.

It’s the in between times that matter.

The time between visits from this monster that matter the most.

Also, the comfort in knowing we are not the only family being plagued by such a terrifying monster sometimes does more than any sign could.

Knowing there are others out there, like us, going about their business, planting gardens, planning trips, getting ready to shop for back to school stuff, all the while looking over their shoulder, under beds, behind doors and in closets, is often enough to get though the paranoid induced moments in our lives.

MS is a monster in our lives, and in the lives of many others.

MS is a monster in Jeff and Sarah's life. And they have a team fighting this monster. And that team raised thousands and thousands of dollars to pay him to get the hell out of their lives.

And our life.

But, we are not hiding him under a bed.

No.

We will continue to show him off and talk about him, and write about him and lure him out of his hiding and take him for a long walk raising thousands of dollars to show him how much we hate his guts.

And if that doesn’t work, then there is always Gracie’s sign.

Happy Hump Day and don’t forget to look under your bed tonight before turning off the light!

Farewell, MS Magnet!

by Tina of MS Keeps Life Interesting

Some time ago, I wrote about my beloved MS Magnet. Capitalized, because it meant that much to me. You see...my tailgate magnets tell an abbreviated story. A story of me!  I think of car magnets as old skool "colorforms", but for grown ups. Oh how I loved to play with colorforms.

Admittedly, some folks overutilize. You've seen this, right? I was behind one today. They had quite the collection of hot vacation spot abbreviation stickers and assorted magnets. I can play that game, too! If they made stickers that said "WORK" and "BATHROOM" and "HOME", I could put 'em on my tailgate, 'cause those are the hot spots I frequent most;-) Furthermore, there should be ample space for each magnet. It's cumbersome to digest as I'm waiting for my light to turn green. I'll bet when they were kids, they used 2 sets of colorforms, thereby overcrowding and discombobulating the scene they were attempting to create. But I digress...

I had MS Magnet when I walked from my car to the store.  Twenty-five minutes later, I returned with my groceries, reached for the liftgate handle, and saw a dingy outline of where MS Magnet used to cling.  I let out a fairly loud, "WHAT THE!", followed by, "OH COME ON! SERIOUSLY???" I rubbed my blurry left eye, hoping it was a trick. I looked on the ground, hoping it fell off. I knelt down to look under the car. I looked closer at the dingy outline and noticed clean smudges on my dirty car. Smudges in which fingers were. Suddenly, it became crystal clear. MS Magnet was...taken. I was so angry that I wanted to throw my carton of eggs on the ground in frustration. Because when I get that angry, I throw stuff. Alas, I forgot the list on the counter again. The list those eggs were on. And so I forgot to buy eggs. Thankfully...

I bid you farewell, MS Magnet:'-( I had a sinking feeling that our time together would be limited. So many people commented on you, asking where it was I got you...they knew someone with ms and wanted you to ride around with them in order to honor that person. Even my husband has one just like you, which surprised me. You figure...me, him, and ms are stuck together for the rest of our lives. It's the whole "in sickness and in health" deal.  You'd think the last thing he'd want would be anything ms-related stuck to his truck. Though he sacrificially offered that magnet to me as a replacement, I cannot accept. Losing you is hard enough. I cannot risk a rinse and repeat occurrence.

"Sooner or later in life, the things you love you lose" - Florence + The Machine

"'Tis better to have had MS Magnet and lost than never to have had MS Magnet at all..." - me

accessible fruit: donut peaches

by Patrick of Caregivingly Yours

(re-posted from August 2009)

Accessible fruit! Who would have thought?

With Patti’s Multiple Sclerosis progression holding and eating some of her favorite foods has become too challenging. As her spouse caregiver, I am always on the look out for solutions and options that can enable her.

Stopping at a road side fruit stand I discovered Donut Peaches (aka Saturn Peaches, aka Angel Peaches, aka Chinese Pan Tao Peaches).

Patti loves peaches. However MS progression was making holding and eating a peach next to impossible. That is until we tried “accessible” donut peaches! They were a hit, easy to hold and easy to eat!

Don’t just take our word for it. Mother Earth News offers the top reasons to eat a Donut Peach:

1. They taste better than other peaches. They're sweeter, with almond overtones.
2. They are lower in acid than other peaches.
3. The pit doesn't cling to the flesh, so it's easy to pop out with your thumb.
4. The fruit's thin, red skin has little or no fuzz.
5. Their small size lends itself to being eaten out of hand.

You just have to like a snack high in Vitamins A and C and only 37 calories per peach.

Thank God when nature lends you a hand.

... and unlike the summer of 2009, this summer they are readily available in the produce section of Giant Food grocery stores at least here in Pennsylvania.

This concludes the 94th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on August 18, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, August 16, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #93

2011-07-21T15:15:00.003-04:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Humility and Grief, Neuro Ourselves

A River of Stones, July 13

by Laura of Shine the Divine

Small Stone:
Some mornings it seems the tub is filled with an equal measure of clear water and tears. They trickle down my cheeks becoming one with the bath as I imagine a former joy that is now impossible. I see myself stepping out, drying off, dressing (that I can currently do) and taking a walk through the quiet neighborhood before anyone else is awake; wheelchair and assistance free.

More pebbles in the river of my mind:
The loss of independence seems unbearable at times. Asking my daughters to push me up and down the hills of our neighborhood in my wheelchair feels like begging. It is hot. They don’t want to get up early while it is cool. They are teenagers. My belly aches, my jaw tightens, as embarrassment seeps into the hole where pride struggles to stay planted. I weep into the water, knowing that I must ask for help to go outside in the oppressive summer heat if I want fresh air (not that it is any different in the cooler months, I still can’t manage the chair by myself on the hills).

Then I contemplate all those in the world whose suffering is far greater than mine will ever be. A flicker of shame is sparked briefly, until compassion pours into the craggy spaces tangled with conflicting thoughts and emotions, nourishing the roots of dignity grafted to pride, transforming self-pity to acceptance, opening to lovingkindness for all beings.

You think you are done grieving, until a new wave washes over you. So it is, so it is. I meet the sadness with a gentle hug, arms wrapped around legs, hands resting on opposite shoulders, forehead on knees, grateful I can still bend into this posture of humility. This flexibility that still remains is a gift, I know. I am grateful.

The Accidental Expert

by Judy of Peace Be With You

Unexpected task
having to research and find
my own solutions.

Some will remind me
I did not attend med school
and am no expert.

Here is the problem.
Experts themselves lack answers.
Whom do I turn to?

The Neuro Visit That Almost Wasn't

by TickledPink at Gilenya and Me

With all of the other medical issues going on I decided to take advantage of the fact that my Medically Needy Share of Cost had been met and try to get an appointment with my new neuro, Dr. Silliman, at Shands Jacksonville Neurology Department. He had been the lead investigator in my TRANSFORMS clinical trial and was very familiar with me.

I didn't have a neuro outside the study (long story; last neuro had a stroke) and I had sort of been leaning on the trial to do all the neuro-esque stuff to me and catch anything that needed catching. In the trial I was poked and prodded and tested to the brink of insanity every three months.

It had now been 5 months since the study completed on Jan. 20, 2011.

So I called a couple weeks ago and got the person in charge of scheduling. She says "can you come at 3:20pm on June 23rd? It's the ONLY appointment he's got left for this month." And my answer is "of COURSE I'll be there! Put me down for it."

So I plan my trip accordingly. It's a 1.5 - 2 hr. drive to get there depending on how you go (I take the long scenic SLOW route as opposed to I-95 which scares me to death.) and I made sure to work in a planned stop to JoAnne's Fabric store so I could feed my new addiction - sewing clothes for my granddaughter. I also planned to stop for something to eat at Crispers which was on the way and has really tasty soups and sandwiches. (I had the Citrus Chicken Wrap <-- totally awesome!).

I spent the morning coloring my hair so I didn't have to wear my "Please don't feed the Skunk Woman" shirt, and I was out of the house right on time at 1:15.
================================================================
Geeze, I started this post quite a while ago (June 25th and it's now July 14th) and probably don't remember what all happened now to finish it. I need to stop starting stuff and not finishing it! I bet I'm ADD (but there I go on another tangent.... oo! a butterfly!.... what was I saying?)
================================================================
Anyhoo, to get to the point (was there one other than the main one about what I ate for lunch?) I get there and was signing in and they are looking at me all curious like from behind the counter. I notice the waiting room is empty. It's 3:15 in the afternoon. I ask which sheet is the one to sign in on for Dr. Silliman since there is a whole line of clipboards on the counter.

The ladies exchange glances that tell me they are bracing for the Angry Patient Response that they both know is coming. She asks for my name and tells me to come sit at the chair in front of her desk like letting me sit in the comfy chair will make what she's about to tell me all better.

I sit down and she starts clackity clacking on the keyboard doing stuff with that number pad over on the right that I never ever use. I hate when they do that because I can't figure out what they're up to. Then she stops suddenly and said, "You were bumped."

I say "Huh? Nobody told ME!"

She said "They didn't call you?"

"NO!"

"Is your contact phone blah blah blah?"

"YES! And I didn't get a call"

"Hmmmm" (long awkward pause).

Me: "Look, I just drove for 2 hours to get here and I'm not leaving until someone sees me. I was told this was his last slot for the month and my share of cost is met and it's the end of the month practically so I guess you need to find another neuro who can squeeze me in."

(she makes that "eeesh" face, upside down smile thing with open mouth that suggests that might not be too easy)

"See, he had his schedule cleared for this afternoon because graduation is today." (I keep forgetting it's a teaching hospital).

"Yeah, well that's fine but it would have been nice to KNOW 2 hours ago before I wasted my day and thirty bucks in gas."

I sat down again (having stood up when I became irate) and said "I'll wait here until you get something figured out because I'm not leaving until I see a neuro."

She left and came back about 15 min later telling me Dr. Nameaslongasyourarm would see me and whisked me away down a maze of hallways that ended up looking awfully familiar. The spot I ended up in was one of the exam rooms over on the Research side where I always went during the trial. I was "home" and immediately felt comfortable.

I saw a guy in a white lab coat who seemed a little unsure of stuff I was telling him. I was guessing it was due to the fact that I'd been on Gilenya for nearly 4 years while it's only been approved since last September. I was thinking maybe the doctors who weren't involved in the study aren't as well versed in the stuff. Either that or they put a lab coat on the janitor and told him to wing it. Turns out the truth was somewhere in the middle. He was a resident. When he brought up my MRIs on the computer and had my initial one from the study side by side with the latest one from Jan 2011, I started asking questions he couldn't answer. Then he starts whapping me with that rubber mallet and when he hit my left knee I kicked him.

I didn't meant to kick him, but shouldn't a neuro who is examining an MS patient have sense enough to stand to the side when testing their reflexes?? He abruptly left the room. Wow. What a wuss. I only kicked him in the shin. It wasn't like I nailed him in the privates or something.

He returns with another guy in a lab coat who seems a whole heck of a lot more at ease with himself and confident. He shakes my hand and introduces himself as Dr. Somebodyelsewhosenameiforget. He takes the mallet from the first guy and gives me a whack. Immediately I could tell he knew what he was doing. He stood off to the side as my leg flew up as if to launch the winning field goal.

He turns to the janitor and says "You're right! Her reflexes ARE brisk!"

Then he taps me all over, watches me walk, and looks in my eyes. This is when he said "I see some optic pallor more prominent in the right eye than left."

Whoa! Back the truck up! I have never had an MS related issue with my eyes so the way he said it, like it should be no surprise, surprised me.

Of course I had to come home and google it. I'm not buying what he's selling though because none of the real eye exams by the neuro ophthalmologist ever revealed any issues whatsoever, so this guy with a pen light and no dilation drops isn't about to intimidate me. I don't care what he thinks he sees.

Speaking of what he saw, he also looked at my side by side MRI scans and got them to sync so that he could scroll through matching image slices like seeing my brain melt away from the top down and compare things. He stopped at one point to teach the janitor/resident about Black Holes. Apparently I have one. News to me.

A Black Hole is where MS has done so much damage that not only is all the myelin all gone but so are the axons it was meant to protect. Total nerve annihilation. He did say that it was so small I probably didn't even have any noticeable symptoms from it.

They did a blood draw after my prompting and a little researching on their smart phones once I mentioned that in the trial they did blood work every 3 months especially since there can be elevated liver enzymes. No mention of any eye exam, PFT or any other test that was so common place during the study.

I left there feeling a little less confident about my eyesight and my brain, but decided they may not know what they're talking about. I'll wait until I get to see the neuro I'd intended to see. I was told to make a 3 month follow up with him.

The day after my appointment I got a phone call. It was a courtesy call to let me know I was getting bumped... from my appointment the day before. Duh.

This concludes the 93rd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on August 4, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, August 2, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #92

2011-07-07T19:49:00.001-04:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Poetry, Honesty, and Golden Advice

Legacy
by Nadja of Living! with MS

I had a nightmare last night.
In the corner of a dump
Hundreds of plastic laundry containers--
Even in the dream state, I recognize them.
Their contents spilled on the ground,
A graveyard of glass syringes.

That is what I left behind?
Piles of plastic and glass—

Glatirimar Acetate
During a double-blind, placebo-controlled pivotal trial, COPAXONE®reduced relapses by 29% vs placebo over 2 years in patients with RRMS (Relapsing-Remitting Multiple Sclerosis) diagnosed using Poser criteria.

No note to mention this drug only helps some people,
No guarantees.
Try Rebif, Avonex, Betaseron or Copaxone
Try hope…

No note to mention
Some never find a drug that helps--
There is no cure for Multiple Sclerosis.

Teva pharmaceuticals packages hope in blue, rectangular boxes.
30, prefilled glass syringes,
1mL Glatiramer Acetate.
Individually sheathed in smooth plastic casing.
Stacked in rows of 5
Soldiers battling disease?
Nestled beside 30 alcohol swabs
Individually sealed.

Cremate my body.
Only ashes remain.
My legacy—
Just comb through my trash.

The Five Biggest Mistakes I Have Made Since Learning I Had MS
by Marie of MS Renegade

I am a relatively smart person, but I have made some pretty dumb mistakes in my life. A lot of the dumbest of the mistakes came after finding out I had MS. I thought if I listed the top five, it might save someone from repeating my blunders.

MISTAKE # 1: Not immediately making long term financial plans.

I was eight weeks into a brand new job in 2005 when I was hospitalized with Transverse Myelitis, which would subsequently lead to my diagnosis of MS. I should have looked into disability right away, even if I wasn’t ready. I should have learned everything I could have about it.

But because my benefits hadn’t kicked in yet, and because I was in complete denial (more about that later), I went back to work way too soon and focused on keeping my job instead of maintaining my health. For almost two years I worked like a dog, twelve hour days, on call 24/7, determined to prove I was going to be the best director in the system despite having MS. And I was. Unfortunately, that did not stop them from eliminating my position the week after I applied for intermittent Family Leave for my MS treatments.

So did I pursue disability then? No, of course not. I found another job within a month, this time commuting into New York City. Ramp up the stress factor! They also eliminated my position within a week of my asking for an accommodation.

So, now I checked into disability, right? No, of course not. I got another job, still pretending I was going to work until retirement, just like I had always planned. After almost two years in that job, their mismanagement caused a huge layoff. Unemployed again. Only now I couldn’t ‘pass’ anymore. Now I needed assistive devices, cane or a walker, to get around. Huge red flag for hiring managers, though of course there is almost no way to prove that.

After a year and a half I am still out of work and, realistically, unlikely to ever return to the work force. My condition has significantly deteriorated and I cannot walk any distance unassisted. I am finally looking into disability, now that my savings are gone and I am in dire financial straits.

MISTAKE # 2: Not immediately looking into more accessible housing.

I adore my little Craftsman cottage. It is my dream house. I bought it completely on my own with no help from anyone and I have been inordinately proud of it. When we moved in my girls were still in grammar school. I pulled up ratty carpet, painted every room in marvelous colors, pulled down vertical blinds to let in the sun, spackled, planted, repaired, you name it. It is a lovely, sunny, charming place that people settle into and are reluctant to leave, it is so comfy.

It is a relatively big house, four bedrooms, three baths, sunroom, living room, dining room, kitchen, full basement, patio, side yard, front yard, separate garage. I could blow through the house in an hour cleaning it. While running a few loads of laundry. While setting the sprinkler out for the garden. While dragging garbage out to the garage.

I never anticipated that one day it would take herculean effort to get up the three stairs from the back door to the kitchen, which is the only way into the house from the back. There are even more steps in the front.

Except for those three, which I have to slowly, painfully drag my feet up one step at a time, I can no longer do stairs. Or clean the house. Or dig in the garden. Or paint or do any of the things I so reveled in when I bought my house. I, quite simply, cannot take care of it anymore.

If I had made plans early on to move to a smaller home or apartment, one that would be easy to clean and could accommodate my wheelchair, my life would be so much simpler. Yes, I will miss my house and mourn it forever. But the stress of trying to maintain it is sucking the life out of me. And now the market is horrendous, I will be lucky to get any equity out of it at all.

MISTAKE # 3: Not having an honest discussion with my children about my illness in the beginning.

I have four children who were ages 18, 20, 28 and 29 when I first got sick. They are good people with good hearts and I know they love me. But I have done both them and myself a disservice by not forcing us all in the beginning to sit down and talk about what MS is, what might happen and what we were going to do about it. I have always been The One In Charge, strong, bossy, doing it all. My husband died when the kids were little and I have misguidedly tried to shield them from pain ever since. What I’ve done is caused even more pain.

My oldest son at the time very gallantly told me if there ever came a time I needed a place to live, he and his then girlfriend, now wife, would have a place for me. But I couldn’t help noticing when they bought their first house, there was no bedroom on the first floor. And what’s worse is, he has pulled away from me and now no longer even speaks to me. And I don’t know why.

My second son will do anything I ask him, fetch things in his pickup, bring over my grandson for visits, anything but talk about how sick I am. On the off occasion something comes up that is unavoidable he says, with genuine feeling, “I’m so sorry Mom”. But any other conversation is taboo.

My youngest, whenever she is confronted with the reality of my illness also says “Oh Mommy, I am so sorry.” But otherwise will not talk about it.

My third child, my oldest daughter, lives with me, with her family. She has become my caretaker. She does the wash I can no longer do, she does the cleaning, I do some of the cooking, but she really manages the house. She works full time and has a five month old baby. She sees my steady deterioration but we don’t discuss it. She is getting burned out.

So do whatever you have to in order to get your family on the same page and to an understanding of the potential progression of the disease. You might never get to a really bad place, but being prepared, together, is so important.

MISTAKE # 4: Not taking people up on their offers to help.

My amazing friends and my sister have stood by me for decades, through horrible losses like my husband’s death, through joys like new jobs and buying my house, through other crises like losing aforementioned jobs. And through MS. They were there for me in the hospital and afterwards. Always, always, always offering help. “What can I do?” they will ask. And what have I said? “Oh, nothing, I’m good.” I have said this when I am up to my eyeballs in laundry, dishes and housework that was getting harder and harder for me to do. Church asked, “Can we bring you communion? Me: “Oh, no I’m good.”, thinking of all the people who were sicker than I was and needed them more.

It has taken me years to finally admit I need help. And lots of it. I am incredibly lucky that everyone is still around offering, because those offers do tend to fade as time goes on and people tire of asking.

MISTAKE # 5: Not taking care of myself.

I found out I had MS. Did I start eating really wholesome food? Did I do whatever exercise plan fit my abilities? Did I take my myriad of medications regularly and carefully? Did I rest and avoid stress as much as possible? Did I make sure I got plenty of sunshine and fresh air? Did I force myself to get out and socialize so I wouldn't get depressed?

No. No, no, no, no and no.

I kept working incredibly stressful jobs and hours. I did not focus on nutrition. I swam for a while, until I broke my shoulder. But when I couldn’t swim any more, I did not look for an alternate way of staying fit. I avoided friends and stayed in my room, in my bed, with the blinds drawn. Medication?!? Tuh, (I spit on the floor), I don’t need no stinkin’ medication.

D. E. N. I. A. L. Oh, and stupidity and stubbornness as well. Yeah, really helpful coping mechanisms.

BOTTOM LINE : You don’t need to panic, but do yourself a favor and make plans. You might never need to use them, but get your safety nets in place. Ask for help. Let people help you (they really like to!). My denial has cost me dearly and is going to cost me more in the long run.

The Best Things I Have Done Since Learning I had MS

by Marie of MS Renegade

Well, the biggest mistakes I made were all pretty big and pretty dramatic. The best things I have done pale in comparison, mostly rather small and practical, but things that have helped all the same.

Best Thing #1: Writing my Blogs

Hands down, the best thing I’ve ever done for myself, period.

I have been writing since I was old enough to know what it meant, but I never made the time or had the courage to put it out there. Oh, in high school I would write suspense stories on the bus. They would get passed from person to person as I wrote the each page. That was fun. In college I did write for the literary magazine. But that was it for ‘publishing’.

Then came blogging.

I had been thinking about writing a blog for a while, but I was really nervous about it. What if people hated it? Hated me? Then I came across a really funny piece on Wiki How called “How to Dissuade Yourself from Becoming a Blogger.” With helpful comments such as “Consider that your voice, even if it is truly a good one, is a tiny peep against the massive wave of tripe out there.” and “Rest easy in the knowledge that it's perfectly okay and respectable to not have a blog at all. Not everyone is cut out to write things that are readable by everyone. The last thing you want to do is contribute more dreck to the universe.”, my insecurity went into overdrive.

Exploring the blogging world I did indeed find awful, awful junk. But just as often I found marvelously written, funny, interesting work. A LOT of self-help blogs. I was in the process of losing weight for my son’s wedding, so in 2008 I took the leap and started a blog with the idea it would be a support system for people losing weight.

Re-reading my earliest stuff, I cringe. I HATE the name, Nourish. The writing is turgid and self-conscious. I am someone who loves to laugh and kids around all the time. This was positively grim. It just wasn’t me. Then, about a month and a half in, I fell and broke my shoulder. Not a usual source of hilarious material. But I wrote about it as a catharsis and that is when I started to find my real, genuine, goofy, voice. And it took off.

I have the best time writing that blog! I have met wonderful people who have become true friends. I have received comments and feedback that is so touching, so kind, so encouraging it has been a real gift. I’ve made myself and others laugh. I eventually started two others, one talking about books and this one, strictly focused on MS. They are a little hard to keep on top of, but still incredibly rewarding.

Writing is something that everyone can do, even if it is not a passion for you. It is a really good way to organize your thoughts and identify feelings. It is a great outlet. And I believe everyone has a fascinating story. So I encourage everyone to write down what is going on in their head, even if it is for no one but themselves.

But my bigger point here is do what you love. You deserve it. It’s time. I love to sew also, but with working and taking care of a family and a big house, just never had a chance. Now I am like a fabric junkie and sew every day. It just makes me so happy. I learned how to knit too. I can never sit still. That wasn’t a problem when I hit the ground running every day, but all that has changed as I become more and more immobile. To use up my energy, I always have knitting with me.

So that is what we need to do when we have a chronic illness. What is it you love to do that has been on a back burner? What is the passion that you have been too busy for? This is the time to cultivate the things that are most meaningful to you. Hey, you deserve it, you have a shit disease!

Best Thing # 2: I acknowledge what my body is telling me.

Me? Listen to my body?!? hahahahahahahaha The only thing I ever listened to was the voice in my head that was running persistently in the future: “I have to do this and this and this and this and after that, this. And then that again.” pant pant pant “And then and then and then…” Never. Stopped. For. One. Minute.

For many of us with MS, we struggle with a fatigue that defies words. There is literally no way that I, even though words are my thing, can convey to someone who has not experienced it what this feels like. Tired, exhausted, spent, none of these even approach it. It is like trying to walk through a wall of mud, almost all the time. Or like all your limbs and your head are attached to weights pulling, pulling, pulling and you have to constantly struggle not to fall over from the pressure. That sort of gives an idea of what it is like.

And then, for me at least, there is the spasticity. The muscles in my legs tighten to the extent it is agony to stretch them out. Especially if I am in the same position for even as short a time as ten minutes. And should I mention the dizziness? A disorienting reverberation that echoes through my body with any movement.

Sounds like fun, huh?

In the beginning, I ignored these symptoms. I DEFIED them. Kept working, cleaning, shopping, doing, doing, doing. And paid the price with regular relapses, needing a course of IV steroids to get me functioning again each time. And having more and more residual deficits each time. It took forever, but I finally allowed myself if not to accept these things, at least to respect them.

So I do the ‘bank’ thing. I am a bank account with a certain level of funds available. Each action I take, getting dressed, taking a shower, fixing a breakfast or lunch, is a withdrawal. I know now I can only make a certain number of withdrawals in a day before I am over drawn. So I budget myself. I rest, I limit. It often feels as though I am indulging myself, but realistically that is not accurate. I am being practical when I rest for an afternoon, because being overdrawn means not being able to move at all. Don't get me wrong, it is hard. I give up a lot. It is a huge concession for me, but the payoff is staying functional and suffering less. Less suffering. Hmmmm. I think that is worth it.

Best Thing # 3: My Overbed Table

Go ahead, laugh. It is, after my laptop, my most treasured possession in the world.

Before I got my table, because I have to rest so much, I was juggling everything on my bed and nightstand. Juggling unsuccessfully, I might add. So a friend suggested getting “one of those tables like they have in the hospital.” Now I am a nurse. If you are a nurse who has ever worked in a hospital, you have seen unspeakably disgusting things on bedside tables. I can cope with these things professionally. But I certainly didn’t want that memory lingering over my own personal bed.

As I am wont to do, I resisted. And spilled things and lost things and sat on things because my bed was a disorganized mess. So, taking baby steps, I priced them. And was delighted to find they had a different name: laptop tables!! Well laptop tables never had emesis basins full of puke or bed pans full of poop on them!! What is more, they were reasonable priced. So I bought one. And I love, love, love it.

Ok, I'll admit, it is hideous. But handsome is as handsome does. It has a tilt top side for my laptop, a solid side for books, cups, plates, etc. and wheels that allow it to be pushed out of the way. The wheels are probably the weakest link as they will not roll over anything thicker than a human hair, but that is just a quibble. I stitched up a big tote bag with half a dozen pockets that hangs over the side of the table to hold my knitting, my i-pod, my mobile phone, CD’s, pens, note pads and unopened, six month old mail. ha ha Just kidding. It’s really seven months old.

Best Thing # 4: Reach-y Thingies

Even if I wasn’t crippled, I’d still be short. Hard to reach things when you are short. I am also clumsy, whether because of the numbness and weakness in my hands or because I am simply clumsy, I do not know. I just know I drop and/or knock over everything. And, because of being so spastic and weak, I have the darndest time picking up the things I have knocked over/dropped.

So, brilliantly, I bought several reach-y thingies. I do believe that is the technical name for them.

I bought ones that fold in half for the kitchen and bedroom, with wide, rubberized tips so I can pick up a variety of things. For the den, where I sew, (this was extra brilliant) I bought one with a magnetized tip because I am sick of playing 500 pick-up with the cups of pins I am perpetually knocking over. Voila! Now all I have to do when I need a pin is stick my magnetized reacher on the floor and I come up with a dozen pins. I usually come up with a dozen other things as well, but we won’t talk about that.

Best Thing # 5: Admitting I have MS

Crazy, huh? That having MS would be on any sort of Best Things list?

Having MS certainly isn’t the best of anything. I know there are worse diseases out there, and I am grateful not to have one of those. But this one is still pretty bad.

However, by admitting I have it I am free to take better care of myself. Denial is a great protective mechanism for a while. It is a good place to hide while the shock registers in your brain. But, when you’re in it, it is really hard to discern when denial goes from protective to destructive. For me it was destructive when I wasn’t taking care of myself because I refused to accept that I was sick. MS has no tolerance for not taking care of yourself. It is a punishing disease that punishes you even more if you defy it.

Also by admitting I have MS I let other people in. I am not thrilled with other people knowing. I hate being what I perceive of as 'weak'. But the fact is people are good and have been especially good to me in light of my illness.

I still cannot accept it. Acceptance to me suggests consent or approval. Consent? Never. I will resent this disease and everything it has stolen from me until the day I die. So I can't accept it, but I can acknowledge it. I can acknowledge the toll it takes and find a way to balance it. That is how I can be good to me.
__________

Those are my Five and Five, five good choices and five terrible choices. However, I believe no matter what choices we make, we need to cut ourselves a break. All we can ever do is the best we can do. Sometimes we choose something that seemed like a good idea at the time. The important thing is to be willing to reconsider when things are not working out so well.

Please let me hear from you about the choices you have made in managing this disease, or any other chronic illness. The more we share the more we can help each other out.

This concludes the 92nd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 21, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, July 19, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #91

2011-06-23T10:18:00.001-04:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Dancing, Empowerment, Walking, Spasticity, Acceptance

Exercise and Empowerment
by Taylor of Dancing With Multiple Sclerosis

Lately I have been trying to find ways to empower myself. I know, that sounds like a big pot of swiss, gouda and cheddar- SUPER CHEESY. But I honestly do feel that with an unpredictable disease like M.S, we should take every opportunity we can to feel like we have some sort of control over our lives.

I have found that the best way for me to feel like I have some sort of say in my disease is by developing a plan, and sticking to it every day. For me, that involves a healthy diet along with an exercise plan. Also, setting aside time for stress-busting meditation, and taking the medicines and supplements that I know will help me. Of these things, exercising daily is most certainly the hardest.

A little background on me: I grew up dancing and dance has always been my passion. I danced all though college and even through bouts of optic neuritis and neuropathy. I was also an avid runner, with four marathons under my belt and I worked as a personal trainer for years. Last year, the most debilitating fatigue I have ever experienced hit me. Getting though a 3 hour rehearsal or a 90 min dance class would lay me flat on my back for a good day following. I would also start visibly shaking and get very weak and dizzy after a dance class (literally crawling to the wall one time in a modern dance class. Humiliating) I realized that I had to adapt every workout for how I felt that day, week, month. This has been one of the hardest things for me to cope with. When I hear runners run by my kitchen window, the desire to get out there and feel the brisk morning air chasing me is almost too much. But I cant. At least not every day.

I've learned that if I set aside 30 min a day to exercise- I feel 20x better than when I make excuses not to. Some days I only have it in me to stretch and do very gentle yoga. Other times I have been able to run, cycle and even dance. All it takes is the MENTAL strength to say 'now I am exercising' and start. Of course, there are times when I have overdone it and spent the next day on the couch. But exercising actually helps me to understand my limits and know how to operate in a way that I move and stay as active as possible without making myself sick. And *yeay!* for endorphins! Nothing beats the great flood of 'happy' that comes after a nice workout.

Exercising is one of the ways I have found to empower myself. It reminds me that I have strength even if it's just the mental strength to TRY exercising. It reminds me that my body is this physical, powerful thing and that I am connected to it in a positive way.

Anyhow, I suppose I am on this subject because I feel so great right now- and the only thing that has changed is that I have gotten back on track with my diet and exercising. I am still dealing with the same symptoms I've had for a month (burning legs, numb face, bouts of trigeminal neuralgia) but I am feeling so empowered right now. I feel like I am FIGHTING M.S again, and not just sitting back and suffering. It's a great feeling.

What I Miss the Most
by S.S.O. from Multiple Sclerosis & Me

the ability to dance!

I'm talkin bout "bussin ah wine (the Trini dance for soca - gyrating ur hips to the music with or without a partner(s))", ballroom dancing, any kind of dance. I've mentioned before that i cyah wine no more - wining with a cane and a stiff left leg (my left side is the problem side - it's weaker, the left leg is generally the stiff one (it always wants to be straight)) is not pretty and does not feel right, so wining is out of the question. All i can do these days is listen to the music, sway side to side (a slight mini wine if u will) and use my cane as a prop to stomp to the beat and in fact Saturday nite, i used it as my flag/rag and was wavin it in the air :-) - UGH!!!

I used to dance when i was growing up - modern dance - and always loved it. As i got older i wanted to learn how to tango, so bout 5 years ago, i signed up with a ballroom dancing school. I was quite good, if i do say so myself, but had to drop out when i realized that i would need to rob a bank to continue. I was able to afford the lessons at first, but as i advanced and got to the level where i could perform at exhibitions and such, the cost became too much and even though i might have gotten away without robbing the bank the 1st year - beyond that there was no telling. So instead of risking jail for a hobby, i decided to let it go. For the short time that i did it, i enjoyed myself thoroughly and as i mentioned, i was quite good.

Nowadays when i'm at a fete or see people dancing anywhere in general, i feel a tug at the heartstrings - it saddens me just a little. When we're partying, most of my friends will come and take a wine on my chair or me (wish i had a picture to share) - just depending on the type of chair :-) and i love them for that - but it's just not quite the same.

Spasticity Poem I
by Mary of Travelogue for the Universe

Quit pulling my leg,
You rowdy MonSter,
Couldn’t sleep past 4
Again.

Never knew what spasms were
When patients told me,

Hard to see,

Calf goes flat,

The Pain,

A Whimper,

A Grimace,
A bite of the tongue,

A face washed of smiles.

First goes flat, then gnarly, the muscles contract

In a schizophrenic symphony,

Discordant,

All wrong.

Rub my knee, flex my foot,

Jump out of bed, stomp like a weird dance,

Go away you spasms and pain,

Die you MonSter,
Die.

When to Ask For a Steroid Infusion

by Matt of Multiple Sclerosis Daily News

This morning I called the hospital to ask for a steroid infusion. My walking is very clunky and my hands feel very funky and I don't want to wait until it gets real bad to do something. For the past few weeks I've had a hunch I was going through an exacerbation. I didn't get in for an infusion this evening, so maybe tomorrow.

But now I'm not sure if I really need it. My walking is bad, but I can still walk. In some ways it feel better than last week. Tonight I walked a half a block and felt okay, so no infusion, right? I feel better than I did this morning, but it took me forever to get out of bed, which is why I called the hospital in the first place.

I'm confused, when should I get a steroid infusion? Is it only for dire emergencies or is it also for impending potential emergencies? I don't want to be "that patient" but right now I am, I'm potenitally wasting people's time. And I've done this before. I asked for a steroid infusion and backed out at the last minute six months ago.

I swear I'm not normally like this but with MS I'm paranoid. I waited until I couldn't walk at all to get my diagnosis, I don't want to do that again. So now I'm trapped in this bipolar situation where the sky is falling and then everything's okay again.

The thing about MS disability is you get used to it. One day you don't walk very well, the next day you figure out how to walk despite whatever went wrong using different muscles. Then you don't feel so bad. This is why I'm going on Tysabri, because I am the king of this. I work around new disabilities and then they don't seem so bad, but if you look at my best a year ago to my best today it doesn't look so good. I'm getting worse over time but I'm learning to deal with it, which is good for me, but it indicates that a new treatment is needed.

That still leaves the question, when should I get a steroid infusion. I have no idea. I really don't, and I hate wasting people's time.

Errands and Walking

from Judy of Peace Be With You

From force of habit
I grabbed my cane forgetting
distances are hard.

Walk, walk, walk some more
my walker left in the car
what was I thinking?

Errand to errand
I slogged on deeply fatigued
until I couldn’t.

Stages

from Angela of Gracie's Mum: a Story of a Mum with MS

We’ve all heard about the Five Stages of Grief. You know, Denial, Anger, Bargaining, Depression and Acceptance. This model is applied to many different situations in life that involve some form of loss. Death, Divorce or Illness fall among the most popular, but there are of course many more situations in which one is forced to rally through the 5 stages. I am seeing my good friend go through this with her recent separation from her husband. Right now, she is fighting it out somewhere between Anger and Acceptance. I watched my mother in law go through all of these stages when my father in law finally succumbed to cancer. I, myself, have gone through these stages. I spent the most time on both Anger and Acceptance.

Which is where I find myself now. On the final stage, only, I wonder, why there aren’t varying degrees of Acceptance, like what happens afterward?

So, let’s recap my 5 stages: Denial, wasn’t one I spent too much time on, I was more in shock than anything else. I did have some moments of ‘this can’t be happening to me’ but they were fleeting because Anger is one dominant bitch that insists on riding ‘shotgun’ to no one. I was angry for being in the hospital, I was angry over the flip-floping diagnosis that encouraged the repeating of the first 2 steps an inhumane amount of times, I was angry because I was in the hospital missing out on Grace, Steve and my career, my students. I was angry that this was the hand I was dealt. I never Bargained, not for my life when I thought it was cancer, and not for my life when I knew it was MS. Who does an agnostic bargain with anyway? Depression, well, that’s a tough one. Of course I was down. I was stuck in the world’s, or at least this country’s, most disgusting hospital, who wouldn’t be depressed? I really feel though that the most time at any stage was spent on Acceptance. Because, there just isn’t any other way to live.

Adapt or Die right?

But, to say, ‘ok, alright, I have MS’ is totally different to saying ‘ok, alright, I have MS’ and actually living with MS. Excuse me, I mean, saying ‘ok, alright, I have MS’ and living in spite of MS. Yes, spite should be a stage of Grief for all of us that go on living to show life who really is in charge here. To show that although life may have handed us a crappy hand that we still go on to win the pot, still go on and all the while we’re flipping life the bird.

Because we have not only accepted our fate, but we’re going to rock it out while we do it.

I have only recently entered this ‘off the beaten path’ to Acceptance. Up until now, I accepted my life as a life that included MS. But I was very conscious of how exactly others would accept me with MS.

While in the Rehabilitation hospital I refused visitors other than Steve, Grace and my parents. I didn’t want anyone, under any circumstances, seeing me in a wheelchair, or trying, struggling to try, to walk. I also didn’t want anyone seeing me in that place because I’m sure that there would have been a few of my friends and family that would have not known better than to blow up on some unassuming nurse about why that place is not condemned. And that would have just been embarrassing. For everyone.

The first time I saw anyone during that period of time was at Chris and Emma’s wedding. I was still wearing the hospital bracelet and was out on a weekend pass. Wearing an AFO leg brace and using a cane with a wheelchair on backup, I allowed the world to see the MS me. I was terrified. At a pre-wedding get together I heard Emma tell Chris how at first she didn’t even know I was there until she heard me talk, and how I sounded so normal. I cried to myself hard that night in bed. And although I know that Emma was reacting as anyone would react to being shut out of a person’s life while they recover from paralysis brought on by a mystifying MS attack that left me almost senseless and in need of a brain biopsy. Without any contact with me there was no way she wouldn’t have thought otherwise. I get it. But it made me realize that people had an expectation. An expectation for the unexpected. There is no manual on how to prepare for that.

So I avoided it. Or tried hard to ignore it because sometimes it was unavoidable. Like when I still didn’t have my license back and relied on neighbours Lenna and Jenna to take me to physiotherapy appointments or for blood work. BBQ’s were tough because almost every deck has stairs to get to the dining area, so you have to go through the house and people you don’t know or haven’t seen in a very long time ask you what happened to you leg? Did you break it? Sprain it? MS? Wow, really? And then I’m MS chick for an hour and it’s hard to hide it while you explain the entire Journey Through Hell. And then you hear all the stories about the so and so’s they know who have or had MS and how they are either so normal you can’t tell or they died. I’m serious. And then of course there is the discussions focused on whether or not I’m going to Bulgaria for the ‘cure’. And then the ensuing explanation about CCSVI and my stance on the topic etc etc etc.

My saving grace was when I graduated from AFO and cane, to just cane, to nothing. And then it was super easy to hide it. And thus another stage of Acceptance: Pretending everything is normal.

Pretending everything is normal and denial are very different. I had accepted the diagnosis, the pain, the fatigue, the needles, the pills, the B.S. But I hid it because I didn’t want the focus of my life to be this disease. I wanted desperately to be able to seem normal just like them so that no one had to know about the MS thing. So I avoided the MS community completely for months because when you are part of a community you can’t get away with pretending you are not what you are that made you part of that community. I avoided eye contact with anyone in a wheelchair or with a cane. I was not like them. I had been like them, but I wasn’t anymore.

Then, I had a relapse.

I was scared, petrified actually, that the jig was up and my cover was blown and that the entire world saw me as a fraud. And then, through all the stages I went through that particular time while recovering from that flare up, I realized that I was kidding myself.

I threw myself out there. And, I screamed to the world that I HAVE MS. I have it, and this is what I’m doing in spite of it all: I’m living!

To live with MS, to be a wife with MS, to be a mum with MS means pretty much the same to me as to anyone else, you live within the confines of your limitations until they are no longer limitations or you move the hell on. Oh, as life goes on and the disease progresses, I’ll still worry about being the mum with the cane and what Grace’s friends may or may not think of me or her. Oh, I’ll still worry about being able to dance at her wedding. I’ll still worry that Steve does way too much around here and I’ll let guilt take over from time to time about not being the household-keeper-upper that I want to be. But I won’t exclude an entire group of people from my world because they too were handed a crappy hand in life and to see them is just too painful for me.

No, because I have too much to offer their world and vice versa.

Oh, it’s on.

Acceptance is a great stage, but allowing yourself to see the possibilities that acceptance brings you are even better.

And the possibilities are endless.

Rock on. MS or not. Happy Hump Day!

This concludes the 91st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 14, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, July 12, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #90

2011-06-16T17:48:00.006-04:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Light in the Shadows

The Journey - Light In the Shadows
by Karen of Meandering...One Moment Please

Hubbers snapped this pic of me taking pics.

I was concentrating very hard on the tiny flower in the shadows, adjusting for the perfect exposure. You can compensate for the darkness by changing the aperture. The aperture setting determines how much light is admitted "into" the camera, determining how much light reaches the image. I just couldn't seem to get it right!

I was skeptical of how this shot would turn out.

I was happy, yet surprised to see that the light in this shot was great. I guess a little stream of sunlight that I was unaware of beamed through the shadows when I clicked off the shot.

I was concentrating so hard on the shadows, that I didn't see the light.

We all know where I could go with this...analogy wise, but I won't. Suffice it to say, many lessons are learned when we least expect.

The fullness of life consists of light and shadow,

and the movement between the two.

wishes

by Just a girl with MS

I wish:

I could have just one more day to live without MS. I want to know if what I'm feeling is from MS, or just situational.
I could find something to be thankful for - other than my doctor.
I would stop feeling sorry for myself.
I could think of MS as another challenge in life, and not an obstacle.

Today’s small stone
by Laura of Shine the Divine

Who knew my chariot had magical powers….not only can it get me where I need to go gliding smoothly like Aladin’s carpet, but it can make me disappear. I hope this does not sound bitter; this was simply my experience. I felt strangely invisible as parents of kids I’ve known since my daughter was in kindergarten walked right past without saying hello during the award ceremony. Perhaps it was because they were focused on their kids, or because I’ve not been able to be involved in volunteering for such a long time, or because I was below their line of vision, seated in my wheelchair. But I remembered all of them and watched them chat with one another. It is interesting to simply observe without the burden of small talk.

What Does the MS Label Mean?

by Judy of Peace Be With You

The MS label
is like a Rorschach inkblot
testing perspectives.

Some use their MS
as a new hill to conquer
obstacles be damned.

Some will surrender
to unknown MS futures.
Some straddle the fence.

I'm very thankful that you continue to sharing your MS lives with me and with the world. You inspire me each and every day.

This concludes the 90th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on June 30, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 28, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #89

2011-06-02T11:58:00.001-04:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

MS Friends, MS Children, Parenting, and CCSVI

A Dedication To All The Gracies

from Angela of Gracie's Mum

In preparing for MS Awareness Month, as you know, I approached several people and asked them to think about providing guest posts. In all, I had a great response. I was able to help tell the story of a fellow mom with MS, a dad with MS and the spouse of someone with MS.

What I was unable to obtain was a post from a child of a parent with MS.

I spoke to several people regarding their mom’s MS and to one person regarding her grandmother who had MS.

It was intriguing to experience the responses. None of the children of a parent or grandparent with MS was able to share their story.

Many, although they wanted to, felt they couldn’t get their thoughts and memories together in order to appropriately tell the story they had to tell.

Another issue, shared by all, was that to retell the memories, to broadcast their thoughts, was far too painful.

My thoughts quickly shifted from intrigue to fear.

In a candid conversation with a friend from Ontario about her mother’s MS, she revealed that “MS took the spontaneity out of going out for dinner, shopping and many other things. Most of our activities had to be carefully planned.” This same friend remembers at a very young age noticing her mother having to take rests along the way from home to the bus stop and that shopping eventually became difficult due to the narrowness of the aisles and the width of her mother’s wheelchair.

To the average person who has never experienced a parent with a chronic illness these examples probably mean very little. To a parent who has MS, who has an active child and a passion for leading a normal life, these examples are frightening.

I do feel a sense of relief in knowing that Grace will likely never remember a time in which I didn’t have MS and therefore will probably never lament or mourn the loss of those easier times. What I can’t come to terms with is that she will likely mourn and lament the lost opportunity to have a normal, easier life.

To have a life where mummy, not just daddy, can run and play in the yard. A life where mummy, not just daddy, can ride a bike to the store to get slushies. A life where mummy, not just daddy, can walk the beach for hours combing for rocks, shells and beach glass. A life where mummy isn’t always needing to sit and rest. A life where mummy is always present, not always needing to lie down. A life where mummy’s, not only daddy’s, legs work and work all the time. A life where the house, and location of that house, isn’t determined by what mummy can and cannot do. A life where planning is because we want to, not because we have to. A life that isn’t measured in spoons. A normal, easier life.

Too many times already I’ve noticed how much she has been forced to mature beyond her years. Too many times already she’s been the one consoling me. Too many times it’s been her little arms wrapped around me, or rubbing my back during one of my weeping, sobbing breakdowns. Too many times she’s asked me why my leg shakes or why I’m tired. Too many times she’s asked me if I need my cane, would I like her to get it for me. Too many times while at physiotherapy or doctor appointments I’ve had to explain a walker or wheelchair. Too many times I’ve heard her say how glad she is that I’m not in one of those anymore. Too many times, I’ve heard her say how glad I’m home and that she never wants me to go to the hospital again. Too many times I’ve seen the wordless expressions on her face, that tell me just too many of her fears.

And that’s just not fair.

I’d be lying if I didn’t say how much anxiety I feel when I’m at the MS clinic or preparing for an MS event like the Walk on Sunday. I’m anxious because I have not totally come to terms with this diagnosis anything beyond what I have personally experienced. The depth of this disease is not evident until I’m around others with it. And sometimes it takes my breath away. I imagine a likeness to my anxiety to that of a newly diagnosed cancer patient who arrives at their first round of chemo. They expect to lose their hair, develop a pallor complexion and lose weight. But it probably never really feels real until they see those waiting for their own chemo rounds and are on their 4th, 5th, 6th, 10th, and 14th round. Some have hair falling out, some have only tufts remaining and others are wearing scarves or hats to cover their bald heads.

Reality becomes visible. And you are left raw and open. But in spite of that you need to remain warm and loving, cool and collected because you are a mum and your little girl wants to know why you’re crying. Again.

You’ll always hear people say that a parent should never have to bury their child. Same is true for a parent having to be cared for by their child. It should never have to be that way. The parent should always be the parent, the child always the child.

When Steve’s father was very ill with brain cancer and in a palliative state at home and my mother in law required help from Steve lifting and bathing him, I watched and cried over the role reversal. And now I cry at the potential for that very same role reversal in my own home, with my own family.

And so I walk. I walk, I raise money, I nag, pester and plead for donations so that Grace will never have to lose her childhood to MS.

This post is dedicated to all the Gracie's of the world. To Kelly and to Kendra and to all the children that have lost a parent to MS, whether in life or in death.

I walk for you and for me.

Have a most amazing weekend!

Five Month Update on CCSVI

from Daphne of General Static

MONTHS!

Thank goodness for the postings of a number of bloggers who talked about having had no results from their venoplasty for CCSVI. Because of them, I went to my procedure with eyes wide open and with the attitude that I would be OK with it however it came out. I just had to know. The money was spent the minute I made that decision and I really had nothing to lose from that point on.

It can certainly be disheartening to have no results; mine have been minor enough to cause me to wonder if they are just my imagination. I have no regrets, however and I feel like a pioneer, having been part of the early research. It's a lot of money, yes, but I was spending it to make sure I hadn't just ignored something that I would regret the rest of my life. I might still get some back from insurance and that would definitely be a good thing.
Because I am now five months past the procedure, I'm going to use this post to update you, and myself, on what has happened.

Within 36 hours of the procedure, I realized that 95% of the pretty awful shoulder and neck pain I had been fighting for over two years was gone. I could feel carpet under my feet. My face and scalp were far less numb.

Within a week, most of those symptoms had returned except the neck and shoulder pain - not a great result, but within a month, I was realizing that I could read difficult reports and understand them again. I never thought I had brain fog, but I have to admit that I would just throw my hands up in defeat over those reports and quit--not a good idea for someone with MS who is trying to keep up with various treatments and alternatives!

At the five month mark, I can still read the reports, I still have much-reduced shoulder and neck pain and I've actually bettered my walking time a fraction on the CCSVI-Tracker site. I now can stand, walk around an object 3 meters away, return and sit in 17 seconds. Just 3 months ago that was 24+ seconds. I thought it was a fluke but it happened again this month. Some of the uninitiated will pause at my pride over a 7 second improvement but hey, that's almost 30% better!

I do feel stronger. I can't measure that, but I seem to last longer, feel sharper and more confident in my walking. At the moment my face is again less numb but it does come and go. Nothing else has changed. I still have foot drop, I still have numb toes, I still walk with a cane and use a scooter frequently, but about the venoplasty? I still have absolutely no regrets.

On Friends, Old and New

from Marc of Wheelchair Kamikaze

"People come and go, and forget to close the door, and leave their stains and cigarette butts trampled on the floor, and when they do… Remember me, remember me." -Brian Eno

There are several phrases that when heard or uttered can forever change the course of a life. "You're hired", "I'm in with love you", and "I do" are a few of the more common, all imbued with the power to positively alter one's destiny. On the flipside, there's a multitude of words that, when strung together, can have a negative, even dreadful impact. Those of us dealing with serious illness have all heard variations on the same devastating words streaming from a doctor's mouth, something along the lines of, "I'm afraid you have (insert name of illness here)". From the moment those syllables are comprehended, we are suddenly singled out, set apart from the world we inhabited just moments before, the land of the well.

No matter how loved or popular the recipient of such a diagnosis may be, they've now been forced into a new and alien social strata, that of the chronically ill, an exclusive club to which nobody wants to be a member. Though friends and family offer heartfelt and genuine gestures of comfort and sympathy, there is simply no way for them to truly understand the disorientation, fear, and alienation wrought by the verdict recently rendered. The newly minted patient, even if surrounded by a crowd, is left to navigate a frightening new reality in large part alone.

Make no mistake, the support of friends and family is vital to the mental and physical well-being of a newly diagnosed patient, but that moment of diagnosis does serve as a line of demarcation between an old reality that was very likely taken for granted and a new one fraught with uncertainty. This crisis point in a person's life can test old relationships, and unexpectedly offer opportunities to build new ones.

Over the course of a lifetime, there is a natural ebb and flow of individuals entering and exiting a person's world, an ever shifting population of friends and acquaintances that inevitably changes with the passage of time. A precious few of these people take up permanent residence in the timeline of life, and transcend friend to become family. True family is defined more by love than by blood, and I consider myself blessed to count among the innumerable persons I've encountered perhaps half a dozen who I know will be constants for the whole of my life. We may not be in perpetual contact, in fact we may not talk for months at a time, and perhaps not meet in person over stretches lasting years, but I am secure in the knowledge that when push comes to shove, no matter the situation, we'll always be able to pick up just where we left off, our bonds too strong to be broken by the strains of time, distance, or circumstance.

These rare relationships, some of which have spanned decades, are cherished and acknowledged as precious, for I realize they link me not only to people that I hold dear, but also represent a tangible connection to my own past, confirmation that what came before was not merely a dream, but a series of very real experiences that I was lucky enough to share with some special individuals. Though I've only been diagnosed for eight years, at times it's hard to remember a life without illness, a time when I was blissfully ignorant of most things medical. These friends turned family, who are of course deeply sympathetic to and aware of my difficulties, look straight past the fact of my illness to the essence of who I am. To them I will always be the same old Marc, and for that I am forever grateful.

Other friendships from my healthy life have been diminished by my illness, really at no fault of the people involved. Many friendships thrive primarily on a continuing series of shared social experiences, and as my disabilities have mounted and my ability to socialize has become curtailed, the spigot that fueled many of these relationships has been turned off. Phone calls and e-mails are still occasionally exchanged, and halfhearted motions are made at making plans to get together, but they almost never actually come to fruition. That's okay, really, as without an ongoing narrative, some relationships are bound to simply stall, and eventually wither. It's all part of the rhythm of life, the natural order of things.

In this age of the Internet and social networking, it's now quite common to reestablish connections with folks who once populated your world, but were long ago got lost to the ever shifting tides of time. I've found that most of these renewed friendships at first burn brightly with shared memories and updates on current circumstances, but once that initial flame is exhausted, they again recede into a state of benign neglect. A few, though, have turned out to be very happy and lasting reunions, with people for whom I never really lost affection, but only lost touch. It is a real joy to rediscover a misplaced but valued friend, like unearthing a buried treasure.

In all honesty, though, my illness has made me somewhat reticent to pursue some of these Facebook friendships, as I sometimes think I'd rather be remembered as the youthful and healthy me locked in my old friend's memories, and recounting the details of life since my diagnosis hardly makes for a lighthearted exchange of pleasantries. Perhaps this accounts for my almost phobic relationship with Facebook, which I suppose it's time I should just get over. I'm completely open about my illness with the world at large, after all, but somehow the prospect of detailing my saga to certain individuals remains daunting. Though I feel I've handled the emotional upheaval attached to illness quite well, I suppose the pain of my reality lies not too deeply beneath my Wheelchair Kamikaze persona.

Despite the love and support of family and trusted old friends, it's been incredibly important for me to develop relationships with fellow patients, others who simply "get it". As kind and sympathetic as the well people close to us might be, they just haven't lived the situation, and thus don't have the capacity to fully gauge the true measure of being chronically and progressively ill. It's like trying to get a blind man to understand the difference between blue and orange, the complexities are beyond words.

I can't imagine how difficult it must've been for patients dealing with chronic illnesses before the advent of the Internet, how isolated and alone so many must have felt. Soon after my diagnosis I discovered some of the Internet MS forums, and in them found a haven where was able to interact with others dealing with many of the same questions, fears, and emotions that were roiling inside of me. I derived incredible comfort and relief in these virtual worlds, populated by so many who had gone through situations similar to those that now confronted me.

I initially ventured onto these forums seeking only information, never imagining that I might find real friendship in the coldness of the words of strangers on my computer screen. But soon the anonymous screen names of those participating took on the characteristics of the living, breathing human beings behind them, and the catharsis of being able to commune with fellow patients was incredibly therapeutic. Before long it felt like some of my best friends were people I'd never actually met or even talked to. When I did eventually have the opportunity to meet some forum members in person it often felt as if we'd known each other for years, unencumbered by the awkwardness of unfamiliarity that usually accompanies first encounters.

Of course, not every MS patient is going to become a close friend, but I found that the shared emotions of dealing with a serious diagnosis can often strip away much of the artifice and posturing that goes on in every day social interactions, and patient to patient we can often cut right to the chase and dispense with most of the meaningless trivialities that get in the way of establishing the bonds of true friendship. I've developed heartfelt relationships with people I might not otherwise have interacted with, folks in locations and with backgrounds that I might never have crossed paths with or given a chance to without the unfortunate commonality of a shared disease.

When eventually we take our leave of this earth, as we all must, the friends we've made and the people we've touched are perhaps the truest measure of the lives we've led. Despite the hardships imposed by disease, and the impersonal nature of the medical world we've been forced to inhabit, we must never lose sight of our essential humanity, and relish and take joy in our close friends, old and new. Even in this high-tech world of instant messaging, Facebook, and tweets, a pat on the back, some gentle words of kindness, and an earnest gesture of support still convey that most important of human sentiments, genuine affection for those we are lucky enough to call friends.

This concludes the 89th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on June 16, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 14, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #88

2011-05-19T20:38:00.000-04:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

laughter, motion, and self-advocacy

Focusing On Laughter

from Kaleidoscope Muff

I believe that once you’re diagnosed with MS, you land on every MS-connected mailing list. I constantly receive notices about lectures, advertisements about medicines, and magazines. Last week, the edition of MS Focus arrived, and it gave me a few smiles. That was the purpose, actually, since all the articles concerned laughter and its value in sickness. I’m usually a hard sell, but I bought into this theory, and I read nearly all of the articles. There were a few bloggers in there as well, and I really enjoyed reading an MS-related publication.

Then I asked myself, “Self do you really believe that ‘laughter is the best medicine?’” That’s when I realized how long it’s been since I just laughed out loud! Sure I’ll give a little giggle at something funny, or I’ll smile when I feel content (or even to just make others feel happy.) But when was the last time I really had a good laugh? Someone may tell a humorous joke – tee hee. I’ll read something written with a ‘tongue-in-cheek’ attitude – ha ha. There’s a sit com I’m watching – har har. But a really good, non-stop belly laugh? Too long ago…

I can remember, in my past, a lot of times wanting to laugh, and having to stifle it because of my location – usually church, but it’s happened elsewhere, too. I can still visualize that urge rising in me, and bending over to prevent the laugh from escaping. I know the feeling of the tears flooding my eyes because the laugh just wanted a release. Now, I wish I had even those feelings!

I’m not saying I’m not happy – basically I am. I get curmudgeonly over this crappy disease and all the losses I’ve incurred because of it. But my nature, my essence, my inner being is that of a happy soul. I’m just saying that I don’t laugh anymore. I don’t hear/see/feel something hysterically funny and respond by laughing. According to the magazine articles, such laughter can help us physically. So what do I do? Laughter is something you can’t truly fake. It’s either there, or it’s not.

One time, not too long ago, something happened that struck me, and I wanted to laugh. It had been so long since I used those muscles that I got a pain when the laughter began – a stitch in my side – and I stopped at once. Is that it? Do I not laugh because it hurts? I just don’t have the answer.

Am I an oddball? Will the laughter return someday? Is there something wrong with me? Are there others out there, who while feeling somewhat happy, cannot laugh? I need to give this some thought…

Peace,
Muff

The Magic of Motion
from Kate of Dancing with Monsters

Back in the day
(When I walked with difficulty)
I would watch
Others' steps.

Heel-toe, heel-toe
The ankle flexes.
The foot arches.
The leg swings.

Each pace is magic.
Each motion leaves a trail of
Fairy dust behind...
Scribbles of amazement.

Now I watch people's hands.
Look how the fingers grasp that small object!
Watch as hand and arm turn the page!
Marvel as small muscles move the pen to make letters!

At once I am filled with breathless wonder
And plunged into a sea of sadness.
My feet no longer walk.
My hands no longer write.

I hold my heart open
By celebrating the magic of motion
And forgiving myself for having to forgive
Those perpetrators unconscious of miracles unfolding.

MS Patients Have to Play Doctor

from Matt's Multiple Sclerosis

If there is one thing I have learned so far as a "newly" diagnosed Multiple Sclerosis patient (going on 1 year now) it's that the most devoted doctor an MS patient will probably meet is themselves... That's right... Not all of us are lucky enough to come across a doctor who truly wants to help make us better which is of course my personal case. I can't speak for everyone but I have talked to many other MS patents of all ages who feel like they have to play doctor because their doctor's just can't seem to take care of business.

We (MS Patients) typically all do our own research on the disease, possible causes, possible remedies, cures, etc. I also find myself researching medications and double checking drug interactions among medications and there has in fact been several incidents where I was prescribed more then one medication at the same time that should not have been mixed... Who figured this out? My Neurologist? Nope. My Doctor? Nu-uh. My Pharmacist? Try Again. ME. That's right, Dr. Matt AKA: Dr. The-Guy-Who-Is-Supposed-To-Be-The-Patient.

When you think about it this really isn't fair... Doctors spend years going to school so they can get that little piece of paper that says "Yup, your a doctor" but then it's like they simply stop learning and keeping up with the medical world and maybe even forget half of what they crammed into their heads before that very important test in college. So now it's up to US, the patients, to double check our doctors work (unpaid might I add) to make sure they aren't killing us....

This brings me to my next point: It's just a piece of paper... All the doctors and neurologist I have dealt with seem to get really offended when you try to show any sign of knowledge relating to the matter at hand... How dare we (MS Patients) go around our all knowing doctors to learn about a disease we will be stuck with for the rest of our lives, how dare we! News Flash: KNOWLEDGE IS FREE, the only thing your paying for at college is the piece of paper you get in the end that says "This person probably should know what he/she is talking about" but like any other class about any other topic you are going to have your students who barely passed, shouldn't have passed, or passed because they cheated. Now those people are giving us drugs and making life changing decisions for us. So please excuse our personal desire to study our particular issues in depth... We may not have a piece of paper to show that we are knowledgeable on the subject, but I guarantee you that a lot of us MS patients know just as much if not more about MS as some of these "half-ass" doctors out there.

Now I better stop here to make something clear... I don't mean to trash talk ALL doctors, I KNOW there are some really great, helpful, doctors out there and that it's only a matter of time before I find one of them but the point I aim to get across is that there are a LOT of MS patients who deal with this exact issue... Mostly everyone I know in fact and it shouldn't be that way... Doctors have a Job and that's not to walk around protecting their ego and insuring people call them "Dr. So and So". No, it's to help people: Hear that doctors? Your Job is to HELP people, so do your job and do it right, please! It's really not that hard...

So until I can find a good, responsible, caring, doctor, I have no choice but to work with the system, I got. If I'm going to have to play doctor half the time then I am going to get what I want ALL the time... I know how I sound right now, really, I do, but you know what, this is how I HAVE to be, this is the attitude I HAVE to have in order for me to accomplish something positive with my health. I know what is wrong with me, I know what problems I have, and I am the only one who has taken the time to really research those problems and the possible solutions for them in depth. My doctors have done no such thing. So yes, I do believe that my treatment ideas are better then what has been so far recommended to me: nothing.

So I will continue seeing doctor after doctor until I find one that will actually listen and take what I have into consideration rather then immediately going into self-defense mode to protect their ever so fragile ego. I should be able to go to a neurologist and say "look this this and that didn't work, I feel like this, so I was thinking we* should try this and look into alternative means of treatment such as this and that" without that doctor shutting me down and ignoring everything I have to say simply because they don't want to hear me playing doctor.

If you don't want your patients playing doctor then don't put them in a position where they feel they have to...

I want to get better and I want to get better more than my doctors want me to get better so I will continue to play doctor until I get what I want and that's ultimately to get healthy again. I will continue to learn on my own, learn from others, and maybe even start schooling so that I can confidently say I know what I'm talking about. Sure most neurologist probably went over Multiple Sclerosis briefly in college but guess what, I have a vested interest in this information and in making sure that I have my facts straight so believe me when I say, if I am going to play doctor, I am going to play a doctor who is doing their job RIGHT.

Don't Stop Learning!

This concludes the 88th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on June 2, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, May 31, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #87

2011-05-05T16:37:00.000-04:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

cycles in life and hope

In the span of life

It's the middle that matters

By Mary K. Mennenga

Learning your capable of doing something doesn't mean you should

Time teaches us we aren't as smart as we thought

When we become willing to admit this, that's when growth begins

We no longer need to be told what someone else thinks

The answer to our question is

We begin to seek out the answers for ourselves

To the questions that the answers bring to mind

Creating even more answers that need questioning

As we begin to make decisions about what we believe the truth is

Who we are and what's important to us and why

We learn that each choice we make will change

What choices and options are available to us

It becomes a lifelong cycle of questions, answers

Learning and personal growth making decisions and choices

It's a kind of learning that you learn as you go

So don't judge yourself too harshly

This never-ending cycle helps you become

The person you know you want to be

It's a journey that no matter what you do

Still takes a lifetime to finish

Well coordinated
by Toots of Maybe MS Truth

Today (now yesterday) my masseuse commented that my knickers matched my walking stick. Let me explain.

a) I have had regular massages since suffering a work related shoulder injury many years ago. I wrenched something. It hurt. A lot.
b) Unusually for me, these particular knickers are patterned with red cherries.
c) I own a variety of patterned walking sticks. This is one of two recent bargain buys from Timpsons. It is bizarre how excited I now get about buying new walking sticks. Who’d have thought someone my age would get so much pleasure from a pretty stick! Not a euphemism.

I often coordinate the colours of my clothing and, to a certain extent, accessories – earrings, bags, walking sticks. This probably makes me sound far more fashion conscious than I could ever pretend to be.

Loss of coordination was one of the first symptoms to affect me when I suffered the MS relapse that led to my diagnosis. I don’t remember what I was wearing when I went into hospital (in an ambulance) but I bet it wasn’t in any way coordinated. I do remember I couldn’t write properly with my left hand. I am left hand dominant. Left-handed to you and me.

I had also started dropping things. I was already using a stick due to footdrop, balance and coordination difficulties when walking - and when standing or bending down. Sitting seemed to be ok but that doesn’t take a huge amount of coordination.

None of this is unusual for someone with MS but when you don’t know you have MS and these difficulties are accompanied by visual disturbances, extreme tiredness (fatigue), strange numbness/tingling in limbs and crushing pain round your midriff then the loss of coordination is disturbing. It was the midriff pain that landed me in hospital, It moved up to my chest and the out of hours doctor told me I had to phone 999. Best thing I did. Once in hospital I had the raft of tests that led to my diagnosis.

On diagnosis, I was told by the hospital MS Specialist Nurse that the crushing midriff pain, which felt like a far-too-tight twisting belt, is known as the MS Hug. I think of a hug as a pleasant thing. This wasn’t, and still isn’t, at all pleasant.

One of the problems with all my symptoms is that they didn’t/don’t feel coordinated. To a lay person like me, it’s like having a whole jumble of stuff wrong. So yesterday it was good to be told that one part of me was coordinated. My knickers matched my walking stick. I was well coordinated. Very important, I feel, to look your best... in case you get run over by a bus.

Taken off of Tysabri

by Maryann of MS and ME

These are my two grandsons, Alex (8) and Albert (12). They came, along with their parents, for a visit in March. We had a wonderful time with them. Behind them in the picture is the Roanoke River. We were all walking on the Greenways, a very nice asphalt walkway that goes through Salem and Roanoke.

I had MRI scans of my brain, cervical spine, and thoracic spine taken with and without contrast. Following that, I had a visit with my MS specialist neurologist last week. He said there were no changes since my last MRI. However, in a blood test taken the first of March, I tested positive for the virus that causes PML in people who are on Tysabri. Dr. S told me to discontinue my T infusions for now, but to not have my port removed.

Because of my tiredness, sleepiness and fatigue, he is weaning me off of the Flexeril and Baclofen that I had been taking. If my muscle spasms come back and are too painful, I am to start taking the meds again.

He did a lumbar puncture, which was my second in 20 years. There was a problem gaining entry, and they ended up having me sitting on the exam table, with my arms extended over a walker, and my chin tucked into my chest. That opened the area up and the LP was done. I also had to go to the lab, carrying the fluid from my spine, and have blood drawn.

I will also have a sleep study done because I am overweight and I snore. Then, I will also begin Physical Therapy.

That's an awful lot of stuff. Dr. S seems to think I have another disease along with my MS. He mentioned Primary Progressive MS, and he also mentioned Parkinson's Disease. I hope I'm negative for both of those!

We're going to Margate, NJ to celebrate Passover with Arnie's family. Along the way, we are stopping in Philadelphia to visit a friend I met on Facebook. I am so looking forward to seeing Rita in person, along with her little dog Jake. Can't wait to see the family and be with them for the Seder. This will be a pleasant trip for all of us.

My Shoes. . .

by Jodi Bean

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable Shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the other one who wears these shoes.
There are many pairs in the world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have work the shoes so long that days will go by
before they think of how much they hurt.
No woman deserves to wear these shoes.
Yet, because of the shoes I am a stronger women.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has MS.

Author Unknown

I changed the last line of this poem to "who has MS." It was written for another use but rings so true for people living with MS. As a social worker and as a person I try not to be judgmental or to make assumptions about people. I often say to myself and/or co-workers "until I've walked a day in her shoes I'm not going to judge/assume." I think it is a good motto to live by.

I don't know what it is like to live someone else's life. Life is different for everyone. Everyone's journey is different. I walk in my shoes on my journey which has been shaped by MS. I can honestly say that it has greatly impacted everything I do and every decision I now make. But my journey is not a sad journey or an angry journey or even a depressing journey. Yes there are bad days and my future health is unknown. But there are also a lot of good days, great days, happy days, time with family, vacations, time with friends, dinners out, sunny days, good books, funny reality tv shows, laughs, drinks, memories, support, love and HOPE.

My journey is filled with hope. Hope that one day I won't walk my journey in shoes with MS. I hope that one day there will be a cure. I hope that I will continue to be strong and happy and motivated. I hope I will never give up the fight against MS.

This concludes the 87th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on May 19, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, May 17, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #86

2011-04-22T12:05:00.001-04:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

past, present, future

service

by stephen of one life: livin' the dream

i read about – on facebook i think – an organization, most likely an organization of women – who volunteer to come to the homes of other women with breast cancer and clean their houses. i imagine they offer to do other necessary chores that these women who are suffering through the ravages of breast cancer are not able to get to – shopping, whatever.

this is a wonderful thing. i feel a little (maybe even a lot) sheepish and guilty for not having offered my services and my able body (back when i had one) to people i knew or knew of, who were in need of simple things like household chores – lawn mowing, odds and ends of carpentry, whatever i could do. granted, i have never been a real handy guy, but i know how to put up a grab-bar or vacuum a carpet or clean a bathroom.

and i know that the women being served by this service are in need of the support, but probably don’t, for whatever reason, to ask for it. i know when my daughter was desperately ill many years ago, i was at first reluctant to accept, and then very glad to receive, a week or two of dinners prepared and delivered to me by friends. not something i would ever have asked for, and something i didn’t even know i needed.

this has gotten me thinking about service, and i wish to heck i had thought of this when i still had the capacity to offer my own service (maybe i still do, but haven’t yet thought yet of what it could be). i wonder why this needs to be an organized service. why don’t people who are able, who know people who are not, simply show up at their homes and wash their kitchen floor, or clean their bathroom, or even just tell them to get in the car and come for a ride, get a cuppa, or just take them to a park and sit on bench with them – get them out of the house. all without waiting to be asked. why didn’t i?

again, i feel badly that, when i had the ability to drive, i never did this for people i knew of who’s lives could have been improved, even for an afternoon, by such a simple act. it seems to be part of being human. there are people – and i admit i am one of them – who can clean their own bathroom, and can get themselves out of the house, but who feel stymied by the fact that, though they can do these things, they now require substantially more energy than they used to. i can wash my kitchen floor, but it takes me four times as long as it used to, and wipes me out.

so i am largely berating myself here for not being as caring and generous and thoughtful a human as i easily could have been, when i could have been. and imploring my other fellow humans to step up and be human. and i will search for, and be wide open to suggestions for, how i can be of service to others who’s needs i can fill.

Has to Be Good Enough

by Judy of Peace Be With You

So I made my bed.

Things weren’t perfect but I said,

This is good enough.

My exhaustion blunts

meeting fully my ideals.

I just can’t get there.

I have to adjust

—though I sure as hell hate it—

and do what I can.

Always starting with today

by Dan Digmann

Like most others worldwide, my prayers went out to the people who absorbed the unimaginable earthquake- and tsunami-induced devastation in Japan.

Intense images from there triggered aftershocks in my heart that was beating half a world away from the epicenter:

• The man in a business suit high-stepping his way into the street to avoid the falling office building debris

• The river of vehicles raging with the flood that flattened and consumed a once-thriving city

• The little boy in a makeshift shelter walking around desperately clinging to a photograph hoping someone could direct him to Mom and Dad

But unlike most others worldwide, I took one part of the media reports personally. Very personally.

Several times the media reported how regions of Japan had diligently prepared for such situations. Buildings were constructed to withstand the earth’s initial and follow-up seismic shifts. Communities exercised monthly tsunami warnings to get ready for when Mother Nature unleashes her fury.

In the end Mother Nature didn’t care, and I began wondering how is my MS any different?

I realize in a way I was comparing apples to oranges, but it’s hard to argue against the parallelism. Like the people and regions of Japan, I’m diligently fighting the devastating effects of this disease. I’m taking my disease-modifying medication to decrease the frequency and severity of MS exacerbations. I’m eating well and exercising regularly to stay in shape and keep moving in case the mega exacerbation ever hits.

In the end MS doesn’t care and, like the earthquake and tsunami, it’s going to do whatever it damn well pleases.

And this isn’t a call for me to give up and quit trying. It’s a charge for us all to continue what we’re doing and fighting like hell to keep this disease in check. We can take measures to take charge of the things we can control such as our attitude, our gratitude, our diet, our faith, our spirit, and so much more.

In the end I do care, and if the big one ever comes I hope that I, like the people of Japan, can spend less time looking back at what I should have done differently and focus more on looking ahead at what I can do to keep moving forward through the aftermath.

Whether it’s last month, last year or five years from now, it all starts with today.

Hope

by Judy of Peace Be With You

I admit I have
a special place in my heart
for young MSers.

Struck down in the dawn
of enjoying adulthood,
their promise flickers.

Here’s what I told one:
don’t underestimate hope.
It does have power.

This concludes the 86th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on May 5, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, May 3, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #85

2011-04-07T18:00:00.003-04:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Dreams, Joy, Love

THIS IS A DREAM I HAD

by Mary of It is what it is, until it isn't what it once was

I found myself standing in a heavy fog. Trying to see through it I looked down at my feet, at first I couldn't see them. As the fog started to dissipate, I found myself standing on grass. I started looking up from my feet and seeing a field of grass. The fog was thinning I still couldn't see very far, but I wasn't afraid. Instead I was amazed at how peaceful and calm I felt.

I saw someone coming towards me, it was Rusty the dog I found when I was a child. As he came closer it looked as if he had the same ball he had when he found me. Running right behind him was Honey girl without a rock that had been her trade mark in life. It was odd but not surprising that we understood each other. We knew it wasn't my time to be with them yet, that I was just visiting.

As we were greeting each other, I noticed they both had all their teeth. I knew they always have toys, balls and someone to play with. They were so happy, we started running, playing catch and keep-away, Shadow showed up and we started to wrestle. Rusty was gnawing on my elbow, as Shadow was running around us, trying to distract Honey girl, as she was barking at me as I tried to grab her paws. Shadow joined us as it turned into a pet me, rub my belly, scratch my ear. With only having two hands the one not getting attention, was giving me kisses then all three were licking my face. I rolled around until I could get up and started running, then I turned and started chasing them. As we were playing I noticed that more dogs had joined in the fun. Some I knew very well, others knew me better than I knew them, but I remembered them all, it was nice to see them all again. Most didn't stay long but some did.

We came upon a lake that was clear and not cold, without a thought we all ran in with a big splash. As we came out of the water after swimming and playing. We went to lay in the shade of a large tree, I didn't notice before, but I was glad it was there. Lying there and realizing we hadn't stopped, because of pain or fatigue, it was so peaceful and quiet.

Then I heard a Loon's call, an eagle's cry; I began hearing all the sounds of the animals I have listened to throughout my life. Sitting up and looking around it was a beautiful scene. The sky was so blue, with puffs of small white clouds. The birds filled the sky; there were eagles, hawks and songbirds of all colors, shape and size. The sounds filled the air. I closed my eyes, as it became the most beautiful song I have ever heard. It filled my heart with joy and peace and I knew I would never forget how it fed my soul.

Rusty lifted my arm with his nose, as I started petting him opening my eyes, to see in the tree was Tony the squirrel. I had helped after he had fallen from the neighbor's house. He came down and laid across my shoulders. As I looked out at the lake and the field of grass and seeing all the animals I have watched throughout my life. I felt them welcoming me to stay awhile longer.

The cat's came over and started teasing the dog's. Standing up with Tony on my shoulder, we started playing again. It was so nice being with them all again running, laughing and playing. After a time most had gone, Tony climbed down off my shoulder and started walking away the fog was starting to roll back in. I heard a dog whine so softly and saw Rusty walk into the fog. The dream was starting to fade, I didn't want it to end. Calling Honey girl three more times as she walked towards the fog. She finally turned and smiled at me, I realized it was time to go.

The whining got louder waking slowly and calling Grey girl. As she came to the side of the bed, I tried getting out of bed but this is the real world and I still have M.S., so giving Grey girl hugs and petting her until I was able to get myself out of bed. The dream was gone, but the love will always be with me.

It was the best sleep I had in years, waking with so little pain for the first time. Knowing we will be whole again but until then, I'll settle for visiting them in my dreams.

Looking back to Look forward

from Nadja of Living! with MS

Lately I have been feeling some creative inspiration again and I have been looking back at old poetry and journals I wrote at age 23. I found a couple of interesting things. Many things are the same and many are different. Many of the images in my writing are still the same. I still love to be dramatic, and I still am in love with the idea of love :)

I also see the way life has changed. Every day is not a drama. The hard days are not as hard. One of the benefits of age is that it lends perspective. There are still hard days but I guess now I know that the good also comes with the bad. While one day may be a trial, the pain passes quickly and great moments can follow right behind tough ones. Since this blog is "Living with MS!" let me state that I have found these observations to hold true after living almost three years with this diagnoses.

One observation I can share with the newly diagnosed (with relapsing remitting) is that relapses do have an end. Sometimes when you think that some function is irrecoverable, it comes back. It is also easy to get lost in the idea that it's all downhill from the time of diagnoses. Not true: the course of this disease is different for everyone.

My first year was the hardest physically and mentally. At age 34, I am in the best physical condition I have been in since about age 16. I practice yoga every day and physically, I can run circles around my 16 year old students. I have enough perspective on the disease at this point to know that this could also change at any time, but this knowledge is also a gift. When you truly face your mortality and realize that things could change at any time, it makes you value each day of health even more.

Joy is often about valuing what you have, not morning what you have lost or could lose.

The Perfect Love

from Suzanne of LIVING - Life With MS

We waste time looking for the perfect lover instead of creating the perfect love. -Tom Robbins

In December of last year I was in my office and heard this *SPLAT* on my office window. I didn’t want to look. I knew what it was. But, I did look and there on the ground in the rocks was a small grayish bird alternating between breathing heavy and panting with its beak cracked open. Other than the breathing this precious little creature was not moving--at all. It was 20 degrees Fahrenheit outside and I figured in minutes, if it stayed there, not moving, in the freezing cold, it would be dead. I gathered up a shoe box and put a blue hand towel in the bottom of it for warmth.

I headed around the building and halfway around, there at the front door, was another little bird sitting quietly against the building, protected from the wind. It wasn’t the same bird I saw out the window; this one was a little thinner. I tiptoed in to get a closer look and I realized this bird must be the mate to the injured bird so I scooped him up in my bare hands and placed him gently in the uncovered shoebox and he just stayed there, quiet and still. I named him Reginald.

I went to the back of the building where I found the injured bird sitting very still-panting. I immediately scooped her up and placed her in the shoebox, next to her mate. I named her Chloe.

He maneuvered himself next to her, hopping sideways in the box.

I took them inside (I know, I’m lucky they didn’t take off) and let them warm up a bit and then I went out in the garage, left the door open and after a few minutes he flew out the door and went and perched himself in the small tree just off to the left. She still was not moving much but I took her outside and placed the box on the grass and just like that she took off and flew to him. I have to say, it was amazing and I felt like the “Bird Whisperer.”

It made me think—would I do the same? I’m not sure. I’d like to think I would but how can I really be sure. Recently, I told my husband, “You are the love I thought I would never have.” And I meant it. I can’t imagine, nor do I want to, a different kind of love or love with another person. So, yes, I would stay—I am sure.

A marriage can be weakened or strengthened by MS-by any chronic illness for that matter. There are all sorts of statistics about divorce and chronic illness and overall when the man has the illness the divorce rate is lower. I also read that the longer a couple is married the more likely they will stay together after the diagnosis of chronic illness.

We've been married for 16+ years. Shortly after my MS diagnosis I began to wonder if my husband would leave me. Wouldn’t he be better off without me? Why would he stay with someone who is flawed with illness when he could share his life with someone healthy?

I will have MS for the rest of my life (probably) and it will always affect our relationship in some way. And yet, he stays.

Is this the perfect love? I think what we have is a love we created over time that is perfect--for us.

Start creating your perfect love—stop wasting time looking for it. ~SMR

This concludes the 85th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on April 21, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, April 19, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #84

2011-03-24T10:19:00.005-04:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Kindness of Strangers, Old Friends, and New Doctors

Mardi Gras and The Blessings of Strangers

by Rodney at CCSVI Locator

I love Mardi Gras. I have gone to the parades for all of my life. I have been blessed to ride in the parades. The riders throw beads, cups, stuffed animals, doubloons and other trinkets to the crowd. The entire event is a love affair of the city.

The parades go on for about 10 consecutive days. Last year my wife went to see her mother in Alabama, and our daughter and I went to a neighborhood parade that got expanded to three consecutive parades because of rain on previous days.

I parked five blocks away. Even though I had MS, five blocks was not that big of a challenge. I had some stumbling moments in the past, but no major problems.

I was fooling myself. I took the cane and failed to use it as we walked down the very poorly maintained streets of New Orleans.

We made it to the parade route and all was great. The people were nice. They gave my daughter and me drinks and food because the hour-long event went to three hours. I sat down on the curb and got along with everyone. My daughter made fast friends and everyone had a great time.

We had caught a garbage bag of stuff at the parades. Our daughter was so pleased with her catches she could fly. I know this neighborhood. I may not know the individuals, but I know where I am.

Realize that New Orleans was coasting on an incredible high. The New Orleans Saints football team had just won the Super Bowl and the city was full of love.

We walked and I stumbled. I got better set and walked on towards the car. About another half block and I was down on the sidewalk. I started to crawl towards a Dodge pickup truck. I would crawl, regain energy and get to my car.

I could not have been prouder of our 10-year-old daughter. She was a trooper and maintained calm in a horrific situation of her dad falling on the ground.

Then New Orleans came up big. I was crawling towards the truck, and someone got someone else and suddenly this young lady, a nursing student, pulled up to take the two of us to our car.

Total strangers stepped up and brought us back to the car.

I am eternally thankful to those helped me in a moment of extreme need.

Shortly, I filed for disability and began looking for new solutions beyond Tysabri for MS.

I was on Tysabri at the time, and my condition had deteriorated to a new low.

Within weeks, I began to work towards getting CCSVI.

So through tragedy, good turns of life can be presented.

The first good turn was when a place I loved gave me more love than I will ever know.

I have through my life tried to be the giver of love to those in need, and just the memory makes me cry.

My little girl and I drove to a restaurant, had dinner and drove home.

The next challenge is to see another parade. I will go again. Mardi Gras is something I want to experience again. This year I will probably not go to a parade. But next year I want to attend parades with the kids.

My life has been filled with goals. Marriage. Children. Home.

My next goal of going to a parade is somewhat selfish, but I want to just stand before a parade and feel the love.

And I will do it with the help of my family.

Taking MS To A Class Reunion...

by Tina of MS Keeps Life Interesting

Ah yes...class reunion time!

Preparation meant:

* Try on approximately 16 different outfits to see which one makes me look less spherical.
* Find which jeans elongate my 5'1" stature.
* Find which shoes have the largest heel I can walk in without falling, again, to give the illusion that I've not lost an abnormal amount of height since graduation.
* Accessorize in a manner that says, "I still got it". Whatever "it" is. Or was.

I was a What Not To Wear episode. In summary, I felt like I shouldn't wear any of it. But the reality is...I've known these folks since about 1977. I'm not fooling anyone with a crafty pair of jeans or dazzling top. I'm not 100lbs. I'm not 5'7". Let the secret be out.

So there I was, entering the establishment and immediately checking in at the...ladies room. When I'm anxious, my bladder shrinks to the size of a pea. No pun intended. Upon exit, I was scanning the crowd for anyone who looked like someone I used to know...but in a "20 years later" fashion. And wondering if, when I approached them with a warm hug, my head/neck tremors would act up and they'd look at me sideways. Or that I'd lose my balance a bit, as I do when I hug someone...which results in a slightly longer-than-appropriate hug. That can be very awkward for both parties. Thankfully, before I had much more time to consider the possible scenarios, I spotted one classmate...and another...and look there's another! Yaaaaay! My friends! Oh how I'd missed them! They seemed to know me upon first glance and vice versa. Whew. That was easy...

Side note: I love that most of the guys are bald. My husband didn't feel so out of place. Seriously though, how could they not be with the abundance of hair gel and mousse they wore circa 1988-1991? If they only knew the price of having that impressive, spikey hair...oh who are we kidding, ladies. They wouldn't have changed a thing!

So when you're used to drinking water and you decide to enjoy 2 Cokes in succession, the bladder isn't pleased. It identifies the black, caustic liquid as a foreign substance and wishes to rid itself of the offender as quickly as possible. After 4 bathroom trips in the first hour, I switched to water...which resulted in another 3 trips, though better apportioned.

Finding my way to the restroom, maneuvering through the large crowd of folks...many of them swaying...became quite an obstacle. I had to navigate a series of steps, as well. They were narrow, which added an extra little spice to the venture. All I could envision was taking a spill similar to the one I had about 6 years ago at a child's birthday party...where I fell down narrow steps, hit the back of my head, and knocked myself unconscious. It ain't a party 'til someone wants to call an ambulance for your mommy, right kids! RIGHT!

But I made it...all 7 times. Without falling, without so much as tripping. Sure, I bumped into a few folks, but they didn't seem to mind...probably didn't even notice. And then it happened out of nowhere. The lights went dim, the colored disco ball spun, and the music began. Oh no. I never, ever used to turn down an opportunity to dance!

I immediately took a step toward the dance floor, but stopped myself. I decided it was a "No" with a capital N. I simply couldn't dance. I'd get overheated, my eye would blank out, my legs would shake, and I'd stagger out. But wait. These are the people I've known since 1977. And these are my favorite songs. MS...may I have this dance? Just this once?

It Takes Two! Apache - Jump On It...complete with applicable "cowboy with lasso" dance! Lady Gaga for good measure! Perfect! As predicted, I lost the majority of my vision in the left eye, my legs began to shake, and I knew it was time to take my "dance partner" home to recuperate. But I'll tell you, my head/neck tremors coincided perfectly with "Bad Romance". It's not the easiest song to dance to, so I just sort of moved my body a bit and let the tremors do the rest. My girlfriends were clapping with approval, so I must've been doing something right. Come to think of it, maybe that truly is the correct way to dance to a Gaga song? Hey thanks, ms!

What was I worried about, you know? I was able to be there and have a blast! I got to dance, which is something I've always loved to do and used to be fairly good at (though not anymore, but it's still fun)! And I was able to reconnect with some wonderful folks that I've missed dearly over the years. I think that's worth some leg weakness, eye blurriness, and a little peeing for good measure. That's what panty liners are for! Did I just say that out loud? Wow. I really AM just like my grandmother...

But behind every wobbly woman is a strong man to shove her into the truck. Many thanks to my dear husband for being that strong man. In sickness and in health...in wobblies and in strength...in temporary blindness and in clarity...he loves me through all seasons. And I love him right back :-)))

MS Specialist

by Maryann of MS and ME

My neurologist here in Salem referred me to an MS specialist in Charlottesville. As I have never been to one, I was intrigued. We drove the 2.5 hour drive to C and I checked in. After getting weighed (ouch) and BP taken, we were shown to an exam room. I wanted Arnie to be there to help me with questions and to help remember what the doctor said. Of course, Monty was with me also.

After a few minutes, Dr. Scagnatti entered the room and shook our hands. I like him a lot. He was with us for 50 minutes. First he did a complete MS history, then a thorough neuro exam. He then asked if I would be able to walk in the hallway without Monty and without my rollator. I told him I could do that as long as I could walk close enough to the wall to catch my balance.

I was asked to walk normally--for me--while he watched. He then had me stand and told me that he was going to give me a push (or a pull), I can't remember which. He said try not to take more than two steps backwards. He did it twice, and I took six steps back. I forgot to ask what that was for.

He then sat and talked to us. He asked if I agreed to be in the Touch program, which is a clinical trial for people taking Tysabri. The check for the virus that causes PML, the brain infection for which there is no cure. I signed the papers. He then said that he wants me to have an MRI scan of the brain, cervical spine, and thoracic spine to check for new lesions. That is scheduled April 1, then I have an appointment to see him the second week of April. He also said that during that visit, I will be assessed by the physical therapy group there.

Since Arnie goes to Charlottesville to his oncologist, we will be making the trip now more than once a month. That's okay, it's just 2.25 hours from home.

I'm glad Dr. Scagnelli wants to see me back again at regular intervals. I expected for him to say to come back in six months or so. I really really like him, and so does Arnie. That gives me peace.

Typical MS Symptoms – My Early Signs

by Tanya Asbreuk

Before I was diagnosed with MS, I had no idea what was going on with my body. In my left eye, my colour vision was fading and I was light sensitive to the point of constant nausea. I actually went out and bought an eyepatch – and then drew a skull and crossbones on it with a white-out pen. Aaarrr Matie! As long as my eyes were open I had a headache so bad it bought tears to my eyes, and I felt this bizarre pressure, like there was an ice pick tearing into the back of my eye from inside my head. I found out later this is called “Optic Neuritis.” On top of that, I had tremors in both arms and hands – worst in my left. This was happening as I was finishing up my manual drafting class at college, which is all about drawing very neat and specific lines with a pencil and ruler. I couldn’t even keep the ruler still with my left hand. I also had a strange sort of spasticity in my right leg – I’d be walking along, then suddenly my leg would kick out randomly, and I was never sure if it was going to end up where I expected it to be. This is called “Ataxia. ” I was using public transit and walking a lot at the time (and still do). I also started slurring my words slightly, and had trouble concentrating on tasks that were usually very simple for me – called “Cognitive Impairment” or "Cognitive Dysfunction."

It was like all these things that I had taken for granted about my body were tired of being ignored, and were all having temper tantrums at once. It was at that point that I started looking at my body as separate from me, and I spent a lot of time asking it what the **** it was doing. My Neurologist told me I was actually having three separate attacks that just happened to overlap. It didn’t make me feel any better about it. Then came the corticosteroids… and I lost some serious time that week. The funny thing about taking 1200mg of steroids in 3 days isn’t what happens during those days – it’s what happens afterwards, as your body is flushing them out. My class apparently went on a field trip the week after my steroid binge, and I went with them. I participated, I asked questions (maybe not as intelligently as normal) and… I have no memory of that field trip. I thought I had dreamed it, and I had to ask my Instructor if I had actually been on a roof that day. I’m just glad there were people around to keep an eye on me! My nurses have since told me that is not a typical response to the steroid, even at that dosage. I’m special, I guess. I sure as heck didn’t imagine it.

I always wondered if there had been warning signs in my past – something that I didn’t know I was supposed to take seriously. After my diagnosis I started researching everything I could think of – early onset symptoms of multiple sclerosis, MS diagnosis, MS causes, disease progression, MS symptoms in women… and came out with a lot more questions than answers. I found out that MS occurs about twice as often in women than men, tends to hit my age group more than others (25 to 45 years,) tends to occur more often in Caucasians then other groups, tends to happen more often to people who live in temperate climates, in developed first-world nations… in other words I fit the profile, but no one seemed to know anything for sure. There is no proven genetic link, but it tends to happen about 20% more often in families having a history of MS. Mine doesn’t.

This concludes the 84th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on April 7, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, April 5, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #83

2011-03-10T20:35:00.001-05:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

What Does MS Equal To You?

The truth about guilt

By Mary K. Mennenga

Guilt as an emotion is what

People use to get what they want

The only way it's able to work is if you buy into it

Honestly only you can make yourself feel guilty

Of course people will use words to reinforce your interpretation

Of what they've said to help you in feeling guilty

It's more about your interpretation of what was said

Take great care whenever buying into guilt

Because if guilt is the reason behind your actions

Your actions will have little meaning

Because it's become something you have to do

Instead of what you want to do

What Does MS Equal To You?

By Lisa Emrich at Brass and Ivory

MS = a twisted roller coaster, spiraling and without brakes.

I can’t recall the last “real” roller coaster I rode. Honestly, I’m trying to rack my brain. Was it during a visit to Disney World in 1985? Or could it have been in a car driven by a speed demon? (That would be a figurative roller coaster, of course.)

During one ride, the anticipation and excitement about being strapped into a seat and allowing your body to be whirled through the air is intoxicating. During the other ride, eyes are closed, feet are trying to push the imaginary brake pedal in the passenger seat, and the adrenaline rush is exhausting rather than exhilarating. (Can you tell I have vivid memories of a car ride which scared the living daylights outta me?)

Living with multiple sclerosis is a bit like a roller coaster ride. Many different and ever changing roller coaster rides, in fact.

When first diagnosed, I think that the roller coaster is ridden in total darkness. You can’t see what obstacles, loops, twists, or drops are to come. The fear of the unknown can be overwhelming and you just want someone to turn the lights on.

When living with MS for a little time, you begin to see patterns which repeat. You get to know your own roller coaster track. If you have relapsing-remitting MS, this analogy may sound very familiar. Perhaps each relapse is like a separate ride which eventually comes back to rest. However each experience changes you a bit and you can never really go back to being a coaster ride “virgin.”

Dealing with life with MS can be an emotional roller coaster as well. You may have learned about the “stages” of grief which can generally be applied to dealing with a new diagnosis - shock, denial, anger, bargaining, guilt, depression, detachment, acceptance. Of course, no one has to go through these stages in any organized fashion. There are no hard and fast rules.

I have found each reminder that MS is a companion who will not leave sends me out on the roller coaster once more. It doesn’t matter how many times I’ve ridden the ride, or how well I know that I will never truly fall from the rickety supports, or that I will once again learn how to live with the new post-ride me. I still get strapped in for a bumpy ride complete with anger and tears, sadness and guilt, and finally resignation to the new normals of life with MS.

A third type of roller coaster which I envision is the one where you can see the rides of other travelers on this MS journey. Your initial coaster may be like the gentle teacups which swirl in circles. As you learn more about the disease, you may begin to see what types of rides others experience. Maybe somebody else has graduated up to a wicked tower of a ride, complete with loopdy-loops and straight drops. You know that you might be on that ride also at some point.

It can be frightening simply knowing what others experience. Knowing what you might experience. Knowing what you have experienced and may again (or always). This knowledge is a type of anticipation which no patient or medical professional wants to burden you with, however “knowledge is power.” It seems better to know what the possibilities are rather than always riding with your eyes closed. Right?

No matter what the ride entails. Know that we do not have to ride alone. Others have come to the amusement park with us. Our friends, family, loved ones, caregivers. And, honestly, we (those who live with MS) do not have exclusive access to the park. People living with other chronic and acute diseases may be there as well.

In fact, life itself is like a roller coaster, never completely flat nor static. We each move forward (whether we intend to or not) eventually. Perhaps we have a bit of control over which ride to take, choosing to become the strongest and healthiest we can be, choosing to open our eyes and face the monster down, choosing to let another person take the seat next to us. Choosing to never go this journey alone.

MS = a journey to destinations known and unknown

MS = a community of travelers who support each other

MS = the reason I am here, right now, reaching out to myself

How MS Feels (A Poem)

by Tammy Malkowski from Pick Tammy's Brain

My hands shake as my words slur,
But it’s not what you think.
I trip and I sway,
Though I haven’t had a drink.

I could fall at any moment.
And this never leaves my mind
But I’m trying hard to manage
As I’m on this MS ride.

My legs look normal
But feel like rubber.
My arms look strong enough,
But melt like butter.

I have slept for hours,
But my eyes still droop.
I want to walk straight,
But my head loop-de-loops.

You think I’m paying attention,
But my mind has wandered away.
I want to speak clearly,
But I’m stuttering today.

I try to read your email,
But I am seeing double.
I want to come with you,
But walking gives me trouble.

I may need your patience
And your compassion too.
But never your pity
For all I have to do.

I need you to be kind.
And try to understand.
I’m living a new life
Doing the best that I can.

I am making an effort
To be someone who
Is making a difference
In my own life too.

Give me a chance
Be on my side
I am still me
Even with all the drama inside.

My body has changed
But my heart is the same.
I still have a beautiful life
Even when playing the MS game.

The thing I need the most
As you try to understand
Is the comfort and confidence
That I still have my friend.

by Tammy Malkowski (2/25/2011)

Looking back to Look forward

from Living! with MS by Denver Refashionista

The next Carnival of MS Bloggers will be hosted here on March 24, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, March 22, 2011.

Thank you.

Comments for this post.

Carnival Delay

2011-03-04T15:20:00.005-05:00

Hi folks,

Did you notice? The Carnival didn't go up yesterday. Tuesday was extra busy. Wednesday was normally day. On Thursday after going and going and going non-stop from 10 am to past 7 pm, I gave myself an extra day to collect the posts. Thought that I would take time today during an infusion of Rituxan to take care of getting the Carnival posted.

Today has not been a boring day, that's for sure. And not really in a good way. But things are going more smoothly now. After having trouble getting an IV started this morning, me bending my elbow too far and causing the delicate IV we did get started to infiltrate, thus getting a dose of steroids and saline in my arm (not the vein), I was tired. Silly arm of mine didn't let me know that there was a problem with the IV until I already had a HUGE bulge on my forearm (which was BELOW the IV insertion point). I think I do know when the tube must have broken through the vein wall as I did feel a 'pinch' at one brief moment while I was adjusting myself in the chair and typing on the computer.

Then a different was brought in to check for veins with a doppler scan (and proceeding to miss three sticks herself, I think), I fainted. My blood pressure seriously was measuring a systolic (the bigger number) pressure of 40 (I was told much later in the day). I'm also told that I stayed lucid enough to talk a bit. I just remember trying to continue to reach through the fog to stay connected with the kind nurses at this new-to-me infusion center.

Then there was talk of admitting me to the hospital so that another team could put an IV in my upper arm (which this outpatient department doesn't do). But eventually pediatric nurses were called to help get another IV started. (Yes, I did finally make this suggestion after the nudge of finding someone who might work with small and difficult veins didn't result in a successful IV.)

I honestly lost track of how many attempts to start an IV were as a number of them happened while I was almost blacked-out. I'm sure that it was at least eight. However, my experience here is still better than the previous infusion location I must say. The attitude and atmosphere made a huge differnce. And Yes, the peds nurses (it took two of them working together) got a good IV going. We were finally back in business.

But since the pre-treatment steroids didn't make it into my veins, I had the same infusion reaction at about one hour into the drip (and we were already going at a planned slow pace with the infusion rate). We had hoped that my body was still processing the steroids which ended up sub-Q. More IV benadryl and steroids were given, the drip stopped, and after 30 minutes we were ready to begin the infusion again.

That was several hours ago. Since we are staying at a slow infusion rate, I still have a couple of hours to go. But at least the medicine is flowing into my body now without difficulty.

As a result of all this drama, I haven't felt like writing, collecting, or creating any posts or articles (including the Carnival) today. My apologies....but now you know what's been going on with me today (and this week, see P.S. below). Thinking of most of the days this week, I've been on the go-go-go much more than usual and I'm exhausted.

Hope things are good with you. Don't fret, the Carnival will indeed come (sometime).

P.S. I was able to spend a large chunk of time catching up with an old friend who was in town this past Sunday. I taught as usual on Monday. Tuesday evening I attended a concert and went out to eat after wards with a small group. Wednesday was normal busy. Thursday was gong to be somewhat busy, but became a hugely long 8 hour day away from home. Today, I arrived at the hospital before 7am; I will probably finish close to 5pm. Long days indeed.

Carnival of MS Bloggers #82

2011-02-17T01:49:00.001-05:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Love, Pride, Brains, Research, and Courage

4-Letter Words

by Kristie of X-Out MS

Today I had to do something that I never thought I would. I sent my husband (at work) a 4-letter word message. Just 4 letters. At a point where I didn't know what else to do - scared to no end - the world around me spinning faster than I could handle - and the only thing that popped into my head & that I was able to communicate was a dreadded 4 letter word.

What was it?

Help.

That 4 letter word for some reason takes so much for me to ask for - and when I do, I feel almost shameful. It's literally acknowledging that I can't do it on my own & I need someone else to assist me.

Super frustrating.

Then - my husband appeared at my car window - tapping to get my attention as I lay there with my eyes closed to the spinning world around me - and I was filled with the realization of another 4 letter word that I like so much better.

Love.

Run your own race

by Dan Digmann

I realize we aren’t all runners, but hear me out on this.

So the other night I was running on the indoor track at Central Michigan University’s Student Activity Center. It’s where I run in the winter. Not that I mind the cold outside, but it keeps my MS-numbed feet and me from running/slipping/falling on the ice and snow.

Nine laps make a mile. The middle lane of the three-lane track is intended for runners. And this time of year, the SAC track is packed with college coeds eager to sculpt their bodies into spring break shape.

This is my fifth winter running at the SAC, and I had an epiphany the other night when a runner blew past me at lightning-fast speed.

Here's a photo of me running at the SAC that was featured in a Morning Sun article last year.

In previous years I would have trashed talked him in my mind, calling him a showoff and wannabe and thinking how damn funny it’d be if he tripped and fell. Nothing hurt but his pride, but that’d be enough vindication for me.

But this year a kinder, gentler Dan had a more mature thought about this man who sprinted by me as though I was standing still. Rather than hate him, I truly saw myself in him. Because that was me … just two days earlier. I was the one blowing by everyone else.

Two days earlier I was speed training. Sprinting half a lap, jogging for one. Sprinting half a lap, jogging for one. I wasn’t showing off. Not entirely a wannabe. I was running my race. For me.

So many times with MS and life, it’s easy to compare myself to how and what other people are doing. Who would have thought a keeping-up-with-the-Joneses attitude could work its way into living with a chronic illness?

This is where I’m grateful I got into running because the lessons I’ve learned there have helped me to mentally move forward in my life with MS.

When I enter a race, the success of my race is not determined by how I finish overall or within my age group. Rather, how does it compare to my personal best time? My personal best time.

Oh sure, it’s great to place among other competitors. But even then, are we satisfied? One time several years ago I honestly placed first in my age group. Rather than fully celebrate first place, I downplayed it and made excuses (“But there were only two in my age group!”). I imagine I would have been more proud and perhaps even bragged about it had it’d been a personal best.

So I try my best to focus on what I’m doing in running and in life and compare it me. My dreams. My abilities. My circumstances. My goals. My personal best.

And how my personal best compares to everyone else is either excused by my disease – “Yeah, but I have MS” – or an added point of pride – “Yeah! AND I have MS.”

Know yourself, and run your race.

Taking My Brain Back from Multiple Sclerosis

by Diane J Standiford

In my new life at the assisted living/retirement community I had to move to (TWO YEARS AGO! WHERE DID THE TIME GO?), there rages within me the desire to build some new brain cells and paths up there. Many firsts and "never tried before"s have taken place. I hope my brain is growing a bit.

When we are babies, EVERY day is packed full of "never tried before"s, then with each passing year we try less and less, just a fact of being human. So, while I know I'll never catch up with that growth during my earliest years, I will do as much as I can.

Never ate peppers before. Never played Bridge. Never met so many people. Never wrote so much. Never read so much. Never typed so much. Never ate oatmeal, grits, Gouda cheese, asparagus, beef jerky, my stomach must be going crazy. Never spoke Swahili. Never learned so much about the Bible or Beverly Hills. (I thought Palm Springs was in Florida--all knowledge from Blogs I've followed.) Never used skin cream. Well, just never have done so many new things since I was a baby. And you know what? I think it is working. My brain says it is having a blast.

"You never___?!!" Yeah, I get that a lot. I'm 53 and doing it now.

Last week I played a great hand of Bridge. Got the cards and played them well. Nine diamonds, partner opened a spade, I countered a diamond, then back with 3NT. (Spade lead might have sunk me.) My dummy had 2 aces and west lead went low right to her! She also had two diamonds. Perfect. Yes, after over a year, I am beginning to be able to play Bridge.

Now, a game like this covers it all---being social with live people (not that any of you are dead, but we don't have to use as much of our brain with facebook friends or when reading a comment/blog, we basically rely on previous brain paths to decide if the words are sarcastic or serious or neither or both) forces the brain to interpret many body gestures and verbal cues. Shuffling the deck of cards (which I could not do at ALL 2 years ago, but now do it with a passing C), dealing them (again, took over a year) and holding 13 cards, all digging those brain paths.

Taking my brain back from multiple sclerosis is my new destiny. I didn't chose MS, but I can chose this. I am putting action behind the words, "Fight MS," because we really are at war here. When I read those who post "Fight MS" (in blogs and Face Book), they too often are charging straight into drugs or surgery, both which have yet to be without a doubt proven to help MS AT ALL! (That's right, I said it, again, some YouTube videos and people in an early stage, RRMS, or complete undocumented by the medical establishment/scientists stories of great turn-arounds, are not cutting it with me, *I* could have made those videos and told of such success myself after my diagnosis in 1990---and the only culprit was the natural and proven course of MS doing its thing, being healed by my own body in ways no, NO, medical researcher knows.)

"Pass." "One club." "One spade." "Pass." "Two no trump."
Taking back my brain one card at a time.

Now!

by Judy of Peace Be With You

Share the urgency.
That should be the call to arms
of all MSers.

What is evident:
time is not on our side.
Quite the opposite.

Running on ice floats.
Current research feels that way.
We need a cure now!

The following video was sent to me by one of the persons who worked on this mini-documentary. It is presented by BYUtv.

Courage: Ryan Ren

Finally, I want to congratulate Marc Stecker, the Wheelchair Kamikaze, for being named the Best Patient Blog of 2010. Way to go, my friend!!

This concludes the 82nd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on March 3, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, March 1, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #81

2011-02-03T18:35:00.004-05:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

New Year, New Beginnings, and Brain Games

This is the Year of the Rabbit. Happy New Year!

Things That Make You Say, "Hmmm…"

from Matt of Multiple Sclerosis Daily News

I feel like for the last week I've been waking up from my diagnosis. It's kind of like waking up with a hangover and asking, "Now what did I do for the last six months?"

I think the biggest thing for me is realizing my mortality. There's going to be an end to things. The thing is, it's sort of a blessing. Knowing there's going to be an end but also having it be in the future gives us time to appreciate our experiences. I really do appreciate life so much more now.

I'm oddly less disturbed by my fading abilities now. Maybe because I've been able to read so many other people's stories. When I read a story about someone only being able to walk to the mailbox after 15 years I think, "Oh, you can still walk to the mailbox? Awesome!"

The other day I was at a meeting where a person with advanced MS rolled over to a counter and then stood up to get something. I thought to myself, "Oh, you can still stand? Awesome!"

I thought that being handicapped was going to be so much worse than that. I know that for some people it is, but even they seem relatively happy day to day. They still have passions and thoughts, they're literally still alive.

I don't know what I was thinking was going to happen. I mean, when I could barely put my socks on, that was scary. But really, potential sock problems are pretty easy to deal with compared to even current problems I have.

I don't know. I'm not saying it's great, but it just doesn't seem so scary anymore. It's a hard road, but at least it's a road.

9 Days!

from Dave at My life with Multiple Sclerosis

Well I met with my neuro yesterday and got some blood tests back. Sticking with the plan and getting visits to everyone prior to treatment!!!! I want base line with everyone.

I am not sure why but today a light bulb went off in my head. A few of you probably already had these thoughts. Neuros treating MS patients are really only a monitoring station/service. They can prescribe the "drugs", the pain pills, the depression pills, sleep aids, etc. etc and after that…there really is nothing. They can do more tests. They can see if things have changed. They can poke and prod you. Then, frankly after that there is absolutely nothing they can do…..They can say, “Keep your chin up, buckaroo” or “Let’s try a new drug” (if you take them)…..but in the end….there you are…nothing…..ZIP.

Off my soap box and back to my appointment. Overall it went very well. My blood tests were great except my B12 1900 is in the stratosphere. After that I listened to the "drugs" talk again. The "drug" conversation, which in no way was over bearing or anything, went pretty smooth and we moved on. Reviewed my changes in symptoms, talked about sleep apnea (creeping into my life), and of course had what I will call a weak neuro exam. As an example and I will leave this alone I didn't have to walk, take an eye test, or take my shoes off. Then the 800 pound gorilla came in the room.. I asked about his thoughts on CCSVI and guess what. What is that….:(? We then discussed it for a bit. We discussed the trials going on. He asked if I had tried getting into them. Of course I replied yes in fact I have and was denied. Then the next bomb..tic..toc… I am going for the treatment on the 11th!

To me and my wife's surprise this is where things took a great turn. My neuro said 3 HUGE things to us. One, I am not against learning from my patients, two if the interventional radiologist in NY needs any test done please let me know and three he would talk with some local IRs about CCSVI and see what they may or may not be doing. KUDOS! Then there was me and he wanted to be in the loop on what happens. I got his email address and will be forwarding him some information on CCSVI some testimonials and my information so far. This part could not have gone better for us.

So to close this out it was a worthwhile trip to the neuro. I now have a neurological resource willing to learn and grow along with me as I go on with my MS. Good stuff.

9 days……

Cognition Issues in MS/ CCSVI

from CCSVI {M}ammanannys{S}tory

I often said only half jokingly that of all the things MS had taken for me, I missed my mind most. I couldn’t remember where I put things, important dates or even what day of the week it was sometimes. Thoughts I wanted to express were not the words that came out of my mouth. During remissions, I did not get total relief from these problems. When I progressed to SPMS, I was afraid I might really lose my mind. I taught adult classes until my ability to concentrate was severely compromised. My neurologist ordered cognition therapy for me when I couldn’t repeat simple sentences word for word. I had to use materials that were more suited to an elementary student than a 50 something well educated woman. I was determined to do all I could to exercise my brain until somewhere, somehow, I could break through the cog fog that made me ashamed to be around my own family. I had a great deal of difficulty keyboarding but I knew there were free resources available online and I used them to get me through the last few years. If the angioplasty procedure did nothing else but improve my cognition, I would have been ever so grateful.

Many people with this condition have cognitive problems. It’s important to do whatever you can to stay sharp while you for your procedure. I have listed a few websites with free games and resources to help you. You might even enjoy playing some of them with your children, grandchildren or friends.

Some people are telling us that we cannot repair the damage already done to our brains. I agonized over that possibility before I had the procedure. Thankfully in this regard the naysayers are wrong. This is just another piece of the CCSVI puzzle where we can take control of our bodies and minds.

There are many resources other than these and I’m not advertising for anyone. These should all be free although some may have “upgrades” to pay for if you want all the bells and whistles, but they aren’t necessary at all.

www.lumosity.com
Lumosity trains your brain with 30 targeted brain games and exercises. The specialized brain training web application comes in both free and paid subscription versions. The library of games relate to speed, memory, attention, flexibility, and problem solving. The full suite of games is open to subscribers only, though those with a free account can play quite a few games across the board.

The games are well designed: the Birdwatching game works on your visual processing skills and concentration. Lumosity also has multiple courses designed by experts that bolster weak areas like weak memory, problem solving, math skills, and also brain related medical conditions like ADHD and TBI. Don’t forget to take their free Brain Grade test.

www.sharpbrains.com
Sharp Brains is actually a blog that keeps tabs on the brain fitness and cognitive health industry. So expect to find a lot of articles on brain health and the use of digital tools to enhance our mental muscles. The site also tries to raise social awareness on the importance of regularly exercising our mental faculties. One way is through the site’s newsletter. But if you are itching to put your brain through the paces head straight to the Teasers section. The large lineup of links to brain games, puzzles, and illusions could keep you occupied for some time.

www.braingle.com
Braingle is a community driven website that says it has the largest collection of brain teasers, riddles, logic problems, quizzes and mind puzzles on the web. 20,000 of them is a large number. Being a part of the community helps as enthusiastic members constantly keep the site updated with the freshest picks of games. As a free member, you can also subscribe to the daily teaser. Check out the Mentalrobics section for some cool brain workouts and articles on topics like stress management and memory.

www.smart-kit.com
At Smart-Kit, you get to cross train your brain on a variety of puzzles and games. All games are meant to be kid safe and designed to stimulate free thinking and problem solving. Some games like the Memory Match Game are easy while you might have to scratch your head when it comes to playing Take Something Literally. The Lateral Thinking games (which comes under the category marked – More) deserve a special mention here.

www.braintraining101.com
Games by their very nature call for a lot of co-ordination and mental skills. Take a game like Tetris or the classic Simon Says and you can ‘reverse engineer’ it as a game for brain exercise.

This concludes the 81st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on February 17, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, February 15, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #80

2011-01-20T16:06:00.001-05:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Perspective, Healthcare Policy, and Friendships

Martyrdom Ain’t For Me, No Siree!

by Jenna of Me, My MS and I

I’ve come across many instances of describing people with MS as ‘MS sufferers’ recently. Everyone prefers their own terms, as it were, or none at all. It thoroughly annoys me that others take it upon themselves to decide I’m a ‘sufferer’ and to describe me as such. I’m not planning on being up for martyrdom, so no ‘suffering’ with quiet dignity for me, thanks! I plan to grow old disgracefully and have a whale of a time doing it!! I’m a person that happens to have MS (and it’s *my* MS thank you very much, so hands off with the descriptions and names!!), not MS that just happens to have a person attached. We’re people, not a condition. Consider the mental health campaign slogan: see me, not a label.

I prefer to have a riotous time during the good times and enjoy them thoroughly, and although the bad times aren’t great, I decided to kick my MS in the arse and fight it every step of the way (even if it means throwing sand in its eyes!), as opposed to ‘suffering.’ Suffering implies a passivity that no MSers whom I know subscribe to. We’re all fab, super folk who are determined and stubborn and fight our MS every step of the way. These are our bodies, it’s our MS, and we decide how we describe ourselves.

Perhaps some people with MS don’t mind at all being described as a ‘sufferer’ and that’s their choice which they make and are happy with. Everyone is entitled to their own opinion, but before the next time you decide to call someone with MS a ‘sufferer,’ consider if you have the right to – are we really ‘sufferers’ and what gives you the right to decide if we are?

Living with MS on Your Own Terms

from Diane J Standiford of A Stellarlife

It always amazes me how well you handle your multiple sclerosis. Oh, sure, you may have cried, been freaked out, asked, "WHY ME?" but after the smoke cleared, you started living with MS on your own terms.

You started a blog. You wrote your feelings and struggles about your new life, sharing with the world very private observations and fears. Then you read other blogs and bonded with strangers who lifted your spirits because you found you were not alone with MS. Strangers became friends and daily visitors.

Your canes or walkers, scooters or wheelchairs, became pals. Pals you decorated, bought accessories for, heck, they became a part of the family! Courage grew in your very soul. Needles-peedles! You found you could inject yourself and eat better, exercise, find new doctors and learn new words. What was once a hideous burden, became a tedious inconvenience.

Most miraculously, you found laughter in the struggles of MS. Would you have found some of the bodily mishaps funny that now you do? Laughter is the best medicine and every day you use it you are certain to feel better. Laugh and the MS World laughs with you.

Most gallantly, you never stop looking for a cure, you fight for your health care rights, you challenge doctors and scientists to "step it up." From your walkers you call congress and organizations urging them to fight with you. Using your damaged brain you weed out MS scams, and plan ways to keep medical experts on your side.

So hats off to all of you! That hotel on Boardwalk is YOURS! And for those of you just diagnosed with MS? Well, very soon you too will live on YOUR own terms. Life is but a game, and we are just the players. Gather your family, friends and loved ones around the game board and remind yourself every day that life is short, so drop the "Get out of Jail Free" card and throw the dice!

Attitude and Perspective for Better Living with MS

from Michael Gerber of Perspective is Everything

Attitude and Perspective for Better Living with MS

I am dependant for my survival on a medication
that is priced at between $25,068 and $30,756 per year.

from Stuff Sick People Have to Put Up With

Yes. You read that right. No, that’s not a typo or a mistake.

My medication alone is priced at between $2,089 and $2,563 per month.
I earn between $15,000 and $23,000 per year.

Obviously you can see the problem here. The total out-of-pocket cost of my medication alone exceeds my entire annual income by up to $16,000.

I often ask people: “What does ‘being sick’ mean to you?” I ask this question because I am curious as to how people will respond. Most of the time, people who do not have any kind of chronic illness can only conceive of “illness” in a few ways:

A. Short-term, minor illnesses, like colds, flus, and mild bacterial infections, that either go away untreated or go away with a relatively inexpensive antibiotic

B. Acute, catastrophic illnesses like cancer that can potentially bankrupt a person, but that are treatable and “curable” (for the most part) with, say, chemo.

and/or

C. Acute, catastrophic accidents that result in broken bones or other surgical needs—-again, can potentially bankrupt a person, but are “fixable.”

From what I’ve seen, unless someone has direct personal experience with chronic illness (either themselves or an immediate family member), they really can’t conceive of it.

“Illness,” for the vast majority of the population, is transient. It’s temporary. It’s that nasty cold you have for 2 weeks that passes. At worst maybe a broken bone or cancer: but hey, with a surgery and a cast or some chemo, you’re set, right? Life goes on. You get “better.” You’re cured. Everything returns to normal.

I think the reason why a large segment of the population actually thinks it’s OK to deny health coverage to people is because they have zero direct experience with a chronic, incurable illness.

I’ve been sick for nearly four years. I am never getting better.

Let that sink in for a minute, if possible. I’ve been sick not for 4 days, or 4 weeks, or 4 months, but 4 years. I will never, ever get better.

It is difficult enough to get through each day, to work and be productive, to manage all of my responsibilities while constantly and unrelentingly sick, without also having to worry about stuff like: “Where on earth will I get an extra $30,000 to pay for my medication when my health insurance policy expires next summer?”

For those of us living with chronic illnesses, every single day is a struggle. I don’t talk about it much, but I am constantly in pain. I constantly feel sick. I remember, before I got MS, how I used to wake up and it was just a question of: “Do I feel sick or well today?” Most days, of course, a person feels well. Then you go about your business and don’t even think about your body, really.

For almost four years the question I’ve asked myself upon waking has not been: “Do I feel sick or well today?” but rather: “How sick do I feel today?”

There is no more “feeling well.” I will never again “feel well.” There will be days when I feel less sick or more sick, but there is no more “well.” It doesn’t exist.

I can live with this illness, and what it’s doing to me physically, and what it will continue to do. I understand that I probably won’t be able to walk within 5-10 years. It’s OK with me that I already have lots of permanent neurological damage. I can bear it. The pain, I can handle it.

What I can’t handle is, on top of everything else, not knowing how I will get health care, or afford a health insurance policy, or afford a medication that costs more than my entire annual salary. I think until you’ve lived with that kind of situation or witnessed it firsthand, it’s fairly easy to dismiss the needs of people who really do need health care. It’s fairly easy to be callous, because your only point of reference for “illness” is perhaps a cold, or the flu.

This is universes away from the cold or a flu.

The illness I can bear. Not having access to health care and medication, I cannot bear. I really can’t. Please don’t ask me to.

My Thoughts: Friendship

from Matt's Multiple Sclerosis Blog

I have always been one to keep a few close friends in my life rather then surround myself in a huge social crowd. It's been hard for me lately not because MS has destroyed my friendships but because MS has allowed me to see people more clearly, to see them for who they really are, to “see their true colors” and unfortunately, I have not liked what I have seen so far... This has led to several of my good friendships falling apart.

Every incident has been different in it's own ways but fundamentally, when you break each situation down, all my friendships have ended for the same basic reason. I have been let down in some way shape or form as a friend. I have always gone above and beyond for my close friends, the people I care about, and the people I love. I have always put them all before myself, and truly tried to be there for them how ever I could. I slowly began to realize in the last few months that none of my friends were really willing to do the same for me. I'm not going to bring up any particular incidents because I am not trying to put anyone on the spot or bring my personal affairs into the matter but I can truly say that I have busted my ass for several of my friends who in return couldn't even show a little effort in trying to be there for me.

I try my best not to hold grudges but sometimes resentment is hard to shed, sometimes it's hard to forget the past and not be bitter. I don't let it anger me anymore because that is a waste of my emotional resources but to be bitter doesn't really take a toll on my emotional well being. Though I guess you could argue that this has caused me to grow cold and I know it, I can feel it, but I can't help it. Why should I care for those who have proven to not truly care for me? For those who have found it so easy to just walk away?

I have just a couple true friends left who I know are genuine but at this point I feel no desire to reconstruct old friendships because I don't know if I believe that people ever really change. It would take a lot for someone to prove to me they have changed, that they want to truly be my friend, but at this point, “sorry” won't do. “Sorry” has lost all it's value to me. Anyone can say it but not everyone can mean it let alone prove that they mean it.

When writing on my blog I try my best to maintain a positive attitude but I can't hide the fact that at this point in my life, I have a very grim view of humanity and it's not because of my MS. MS might have aided some of my negative views on humanity but for the most part it's my life experiences and social experiences that have lead me to think the way I think and feel the way I feel. Knowledge is power but knowledge can also be a painful burden. Maybe I have just yet to mature enough to know how to properly process and handle the knowledge I have obtained, I don't know, I just know that I am growing cold and calloused and I have no idea what it will take to change that or how long it will take for that to happen.

“Ignorance is Bliss”

A true statement indeed, but ignorance is just the path of least resistance, the easy way out, and knowing myself and my pride, I know that I can't take that route in life. I'll eventually have to learn to deal with knowledge, reality, the world, humanity, people, all of it. I'm not taking the easy way out, I will endure and I will overcome.

This concludes the 80th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on February 3, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, February 1, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #79

2011-01-06T18:41:00.002-05:00

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Blessings, Honor, Friendships, and Self-Awareness

Bright Blessings

by Laura of Shine the Divine

through

the dark of night

I offer bright blessings to all

may we each open our hearts a little wider

absorbing the love and peace that surrounds us

illuminating any darkness we feel

saturating us with

Spirit's sacred

light

may the returning light of winter

continuously sustain us,

you, me, our beloveds,

all beings beyond

time and space

discovering

holiness

exactly

where

are

For my doctor

by Mary at Travelogue for the Universe

For Hillel Panitch,
my primary MS doctor and the relentless researcher of MS,
who had stellar bedside manner and
who I really had to be talked into seeing by my eye doctor. In the end he became my first choice neuro doctor and I am very picky, being an "old neuro nurse".
I wrote this shortly after I found out he was gone.

I was sitting in the McDonalds parking lot,
Eating my lunch on the road where I work
(I still work full time, thanks Dr. P...)
Assessing clients

And helping them access personal care.

The clinic called and my heart always skips a beat when they call me

Back to my other reality....

This is YOUR life, not some other sufferer.

They wanted to invite me to a tribute to Dr Panitch.

I was on the “a” list.

I looked around, was there anyone looking at me?

Did anyone see? Hear?

I wanted to be polite, respectful,

I wanted to say, Yes.

My schedule flashing in my head.

How could I do that, I thought.
It is for the MS society.

The people who thought my MS story was too long and when I shortened it they said it wasn’t quite right.

But it is for Dr Panitch, I thought,
A lifetime achievement award.

No, I said, so plainly, No.

I am honored (and I was sincerely),

But I cannot do it.

I lived in two worlds,

The Neuro Nurse and the Neuro patient.

My friends, coworkers from 30 years ago would be there,

as health care professionals.

How would I fit in?

My world, a subset of both nurse and patient.

Hearing he is gone from our material world,

I am relieved I was not there,

That my memories can be of him standing in the hallway,

Trying to peek at my progress on his study meds,

Briefly making eye contact, I smiled at him,

Trying to say what he has done for me is appreciated.

He has bought me some time,

He has given me expensive cutting edge treatment I would have otherwise gone without,

He put his hand on my shoulder and said, “Don’t worry, we will take care of you.”

And

He meant every word.

Participating In The World

by Herrad of Access Denied

Giorno Di Mercato, 1976

Expressionist Art.

Emilio Guiseppe Dossena.

The thing I love most about the internet is that it gives me the ability to communicate with people all over the planet.

That is really what the internet is all about, simple and straightforward communication and participation.

Nothing compares I think to the pleasure of "talking" to people every single day around the world and sharing our stories and information.

I get an opportunity to explain my opinions, viewpoints and share information which may be helpful to others.

My words are not changed by anyone, every post, with the occasional interesting article, has been written by me.

My blog welcomes comments which lets visitors tell me what they think of my posts and share their stories.

In the 4 years since I started blogging I have made many friendships and received and given alot of support.

I get a lot of positive feedback and comments which make my life so much better and stops me being isolated.

When I got my MS diagnosis on 19 July 2006, I started blogging the next month to receive and share information about MS and the difficulties of becoming handicapped.

This was also in order to make sense of what was happening to me, but also to communicate with other people with MS and without MS.

I believe that blogging has expanded my horizons and I have no doubt that the internet has saved my life.

It enables me to communicate with others around the world, even when I could not leave my bed for two years.

This was from August 2008, due to a pressure wound, this finally healed in August 2010 and I could sit in my wheelchair once again.

Since early 2009 I have been writing a blog post every single day, something that would have been unheard of 3 years ago.

I communicate regularly with people I have never, and sadly, will never meet, except online.

The internet has enabled me to communicate with others and be part of the world.

That is what the internet has done for me, it enables me to participate not just to consume, and despite my MS I can and do participate in the world.

It has helped me despite my severe disability caused by my MS to communicate, which has been and still is being a supportive and liberating experience for me.

The Year of Doing Less

by Joan of A Short in the Cord

I'm going into my fourth year of "early retirement" due to disability. As is my custom, I am reviewing lessons learned from last year.

The most important lesson learned is that I should not plan to have the same level of energy that I had before disability. Last year, there were too many times when I believed that I was normal and had the same energy level that I had before. So I filled up my schedule, made commitments, volunteered endlessly, and then crashed in confusion. "What happened?" I would whine. Then I would go to the doctor looking for yet another prescription, or try alternative therapies that friends said were successful for them.

But last year, I lost sight of my authentic self. I lost sight of the reason for my disability. This next year, I am going to ignore the cultural message that "You Can Do Anything You Set Your Mind To and Don't Let Anyone Tell You Otherwise." Bullpoop. I'm going to avoid going to lectures by people with MS who climb Mt. Everest or travel the world in 80 days. I am not using them as role models any more. I will be my own authority and not succumb to peer pressure.

This next year, I pledge to do less. I pledge to focus on a few fundamental activities, and to avoid saying 'yes' to everything. I pledge to give serious thoughts to my priorities. And I AM prepared to deal with the disappointments - mine and others.

Just thought you should know this now so that you will be prepared for a different year, too.

Happy New Year!

This concludes the 79th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on January 20, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, January 18, 2011.

Thank you.

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