I founded the Carnival of MS Bloggers in 2007 to connect the growing MS Blogging Community. My vision was to become the central hub where bloggers could find each other and to feature a collection of independent patient voices.

As larger MS organizations have also begun to feature patient voices on their own websites in recent years, the Carnival of MS Bloggers is no longer the single driving force in serving this wonderful community. For that we should all be grateful.

Thank you for continuing to support me in this one-person labor of love over the years. As of now, I will be taking a break from hosting the Carnival of MS Bloggers.

Please feel free to continue to email me to alert me to new MS blogs to add to the comprehensive MS Blogging Community index.

Lisa Emrich

MS Bloggers A-D

MS Bloggers E-L

MS Bloggers M

MS Bloggers N-S

MS Bloggers T-Z

MS Caregivers and Loved Ones


Thursday, January 19, 2012

Carnival of MS Bloggers #106

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

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.

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?

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.

Thursday, January 5, 2012

Carnival of MS Bloggers #105

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

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.
  1. I plan to do something. (Intention)
  2. I make an effort to do it. (Action)
  3. It doesn't go the way I think it "should" go. (Judgment)
  4. I let go of my ideas about what should have happened. (Mercy)
  5. I reset or re-envision my intention. (Resilience)
  6. 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

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?

by Marc Stecker of Wheelchair Kamikaze

A strongman forearm.
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.