Carnival of MS Bloggers #140

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

Fluttering; synchronicity

from Robert at The Gifts of MS

Well, "relapsing/remitting" is one thing, but "fluttering" is another.

There's This Day, just a day like any other, except... my air-quotes "walking" is better. I use the self-propelled wheelchair briefly as a walker (hint to others who might want to try this with their wheelchairs: be sure to lock the wheels. Then, it's just an oddly-shaped walker. With the locks off, it's a face-planter) and things work... not so bad! Not bad at all! I think, is my "walking" getting... better?

Cut to This Other Day, just a day like any other except... my air-quotes "walking" is worse. BANG, it's worse. No creeping-slow-gradual-is-this-maybe-better improvement, it's BANG worse. Fortunately, that's a metaphorical bang, although I've felt that almost any second I was going to hit the ground, it hasn't happened yet. "Yet" is precisely what I'm hoping won't happen, but you never know...

And these changes are day-to-day. Last night was bad, this morning isn't quite as bad, but it's also not quite as good as it has been, sometimes. And this isn't what I think is a relapse/remit pattern, and I'm only guessing because that's never been my experience of The Disease, it's not a multi-day or multi-week vastly better/vastly worse vacillation... It's "Dang, today's better!" followed by "Dang, today's worse!" No rhyme or reason, no "Gee, I did [x] and things worsened, I did [y] and things improved," no visible pattern of causation. Just ... fluttering.

Well, that's life. Some days better, some days worse. Us M.S.ers, we just notice it more than we used to; we think it's happening to us because of The Disease, but it's really just the noticing that's due to The Disease. "Noticing" more clearly is also a side effect of meditation, especially zazen meditation, which is a hard path but one that I'd recommend more enthusiastically than The Disease. Involves fewer M.R.I.s, for one thing.

And a cute pice of synchronicity: A friend of mine sent me a news clip, there's a study going on at the Mayo clinic involving just aspirin! Three groups, one gets placebo, one gets "baby aspirin" dosage, one gets the equivalent of four tablets a day. Well, I don't qualify (I don't have the right "kind" of M.S., I can't do a couple of other things they want someone to be able to do), but I seem already to be on the "some aspirin a day" path, thank you very much musculo-skeletal headaches, and thank you very much Excedrine for putting my favorite brand back on the market because those (for me) have always been better than pretty much anything else I've tried.

So, I'm not being "studied" (as such, at least by the Mayo Clinic), but I'm workin' the same study, kind of, by being between the "high" and "baby aspirin" dosages.

Doesn't really mean anything, statistically speaking, but it does cure my headaches. And really, what part of "makes me feel better" is a bad idea? Well, presuming it causes no "stealth" harm... feeling better is a good idea. Isn't it?

Well, I think so. Besides, thanks to sensitivity gifted us by The Disease, I'm sure I could tell whether I had an active or placebo dosage, which eats into the "blind" part of "double blind" studies. Which means I wouldn't help them, they wouldn't help me. So, I'm staying home and taking my aspirin and wacko Chinese herbs.

And for all of us who navigate the waters of The Disease... how often do we get to say "That's fine by me" and smile?

Well then, let's do it:

That's fine by me!

This concludes the 140th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on May 16, 2013. 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 14, 2013.

Comments for this post.

Carnival of MS Bloggers #129

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

Rediscovering One's Self

What's for Breakfast? Watercolour Hibiscus

by Linda of Bright Wings of Summer

Funny days

Warning: This post may use the words poo &bum, and cause outright laughter...

What did you have for breakfast? Sometimes my days are very boring, and not much happens.  Other days...

It started yesterday.  During a fab day out Christmas shopping with a girlfriend I developed a sore ankle - which I naturally ignored - never let a foot impediment get in the way of a good Girls Day Out!  Then later that night, exhausted, and with Hubby just getting home at 6.45, and no dinner on the table - I said - well lets just have waffles!  SO there were were at 8.00pm at night having waffles, and cream and maple syrup - for Dinner!! (At least they were sourdough, and have eggs in them... I won't mention the vast quantities of fat in the butter.  or cream. Not if you don't. )

Anyway - My sore ankle? is still sore... this morning I discovered it has a reduced range of motion.  So what? Well after a quick google check - don't you love google - it has ALL the answers!  I have spasticity in that left foot now it seems. Yucky yucky yuck poo bum.  (I DID warn you!)

So what?  Well I have MS (Multiple sclerosis) (If you don't know what that is go and google it.  Try wikipedia.  I'll wait)...

So - this is my First sign of progression since 2006,  I'm not happy 'bout that.  Which means today is now a designated "rest, stay cool, and no stress day"... Right... other than paying the bills, taking the framed art to the shop, returning a broken frame to K-Mart, and the FN (fortnight) grocery shop?  With a heat wave coming.  Well 30 is a heat wave for me...    Hmmm my list of things to do is huge, and now I need to make dr appointments, and think about treatment for spasticity -which means physio, or doing stretches myself, which will still take more time out of my day - groaning melodramatically -

why is life never simple?  

O.K. need to stop thinking about the list. It's making me stressed just thinking about it.  Right then - No lists. They are evil.  (Except when you read other peoples lists on Aimees List it Tuesday :-).

I Breathe. Nice thoughts. watching the birds enjoy the bird bath.  Oh, and see the cat watching them through the window - cute.  But  I know what he wants to do - go outside and eat them.  Don't think about the psycho teenager Alpha Male Cat who wants to go outside and hunt...or the fact that both the cat litter trays really, really do need freshening up... or the cat hair dust bunnies I know are there somewhere if I look... nope not looking.

Instead Look at the pretty flowers in the vege garden...without thinking of the fruit fly that have already stung the tomatoes, which requires a trip to Bunnings to buy fruit fly traps, or netting, or napalm... and definitely don't think about the 28 spotted lady beetle that you know is lurking on your eggplant leaves having a munch...

Thinking about munching...Hmmm getting hungry - time for breakfast.  At least we have bread (it's only just a little stale), and eggs, and milk (just enough for a coffee).. which I'll surely need if I am to be superwoman and figure out what I can do with the 2 wrinkled apples, and a sad lemon, I can see in the fruit bowl...  Nope can't be bothered with the eggs - there is just enough waffle batter left for 1 more - and THAT's what I had for breakfast!

It's Complicated 

by Kim of Doc, It Hurt When I Do This...

We cripples have learned a thing or two about the Laws of Physics.  For example, a body in motion stays in motion and a body at rest tends to keel over and plant itself face down on the sidewalk.  That’s one of the easy ones.  Gravity claims us all sooner or later, but it claims a cripple a little sooner than most.  We know that aging is the great leveler, we’re just waiting for our peers to catch up with us. We might need a cane or wheelchair in our fifties, but don’t we feel a bit smug whenever some able-bodied person scoots around us, frightened of his own inevitable decline?  That’s okay, we think, you just keep running, buddy, the day will come when you can’t run anymore. You go, Charlie. 


We cripples have also learned a thing or two about love. How spouses, for example, who love us very much, can entertain a twinge of disappointment when we cannot go for an impromptu walk around town, enjoy the rush of blood in our limbs and the air in our lungs, the quickening heartbeat, the children playing catch in the street and the sun slipping towards the horizon. It is an uncomfortable feeling, disappointment, it makes them feel that perhaps they are not good people for having such twinges. So they push it away.

But these small disappointments can accumulate over time. We are not aware of this, of course, though we do worry that it is being felt. We perform reality checks on an annual basis, we give our spouses opportunities to come clean.  But they reassure us, year after year, that it doesn’t matter, honey, I love you, I’m not going anywhere. And we believe them. We believe them because they dote on us, bring us coffee and cook our breakfast on Saturday mornings. They do all the housework and grocery shopping, open packages for us, chop the veggies for dinner. And they do not withhold affection, we get held and kissed and gazed at lovingly every day. So it must be true. It doesn’t matter. They love us. They aren’t going anywhere.

And yet we have doubts. We push those doubts away and tell ourselves they are of no consequence.  But they infiltrate our bliss in various ways; in my case, in a recurring nightmare. My husband and I are at some event in a large building with a stage. When the performance is over we head towards the exit along with everybody else. The crowd swirls around me and my husband is no longer at my side. I search for him, spot the back of his head a few yards away and push through the crowd in that direction. But I lose him. I cannot see him anywhere. My vision begins to darken and my legs weaken. I hobble along corridors through room after room and decide to head for an exit, he’s sure to be outside waiting for me. By the time I reach the door, the building is empty and I am alone. I step outside into the waning light, hysterical with grief, and peer at the narrow distances, past a now empty parking lot and across a barren landscape, and drag myself in the direction of home. Just before I go completely blind, I awake.

An MSer’s worst nightmare is not physical decline, it is abandonment. A couple of months ago, my husband of not quite two years, my partner for six, my doting, kind, funny, compassionate mate, informed me that he didn’t want to be married to me anymore because he resents my disease. I cannot be his activities companion. He feels like a coward about the future. He cannot be the husband I need and deserve.

It doesn’t matter, honey, I love you.  I’ll never leave you. Yes, he spoke those very words, year after year. Old reliable, he was. Like a 20th century car that gets an annual tune-up by its conscientious owner even though it never needs the points and plugs replaced. The fact that you cared enough to perform routine maintenance endeared you to it in a human kind of way. Unnecessary maintenance, but cute, very cute. I get a pat on the head for being so aware, so thoughtful, so painstakingly dedicated to taking nothing and no one for granted.

What isn’t cute is that annual reality check was never an invitation to placate me. I was not trolling for the lie, I was courting the truth, the whole truth, and nothing but the truth, so help me God. I’m funny that way.  I need to know even if it hurts. He knew that about me, knew that if he wanted out I would want to know about it. I told him that. Honey, if you ever decide that you don’t want to take the whole journey with me, I’ll understand. We’ve all got to follow the path we think will make us happy. And I meant it, every word.

Perhaps it was pride that held him back, or the prospect of getting bad press, I’ll never really know for sure.  Look, there goes that guy who dumped his disabled wife. What a putz. There are not a lot of ways to spin that kind of abandonment in a way that would make yourself a sympathetic character, goodness knows.  Judgments would be harsh, there is just no getting around that. It’s enough to hold a husband hostage in an unhappy marriage for months, even years. Keeping such a grave secret took its toll on him, and when he fessed up to me about his unhappiness, he wept deeply and often while I took in the news; I was at first incredulous, then defiant, bargaining for a delay in his decision until he sought therapy. Eventually, acceptance silenced me. I had just gotten the news that my marriage was dying and I had the grieving ahead of me, but for him it had died long ago and he was simply revisiting the grave with a heavy and regretful heart, only this time, he had brought me along. I had to leave.

He moved me back to my mother’s house where I had lived for twelve years before meeting him. I lay on my old full-sized bed and cried, feeling as though I had been punished and sent to my room without supper.  My mother had painted my old bedroom white after I’d moved in with him. And I suddenly felt as though I had never left that bed, that I’d been in a coma for five years, dreaming that I lived in another house with a husband, two dogs, three birds, a garden, lulled by the sweet strains of marital devotion, and now I had awakened back in my old bedroom, the white walls being the only proof of the passage of time.

A month has passed since the separation. I was sad, grieving, angry, bewildered for the first two weeks, but I’ve stopped crying now. I feel relief, I’m free. Liberated because I am no longer waiting for him, no longer feeling guilty for not being normal, no longer afraid that I’ll disappoint him. The worst has happened, I’ve been abandoned because of my disease.

But it is not the hardship that I feared it would be. I missed him for a while, for two weeks, but then I stopped, and that in itself troubled me. I realized how distant he had become for the whole previous year and how easily I had made excuses for him. He was tired, he worked two jobs and had other responsibilities besides. He was in a twelve-month rehab program and I figured I was there on a rain check for a year, I’d wait for him to finish it and then I’d get him back again. So I waited. I championed his progress, felt proud of him, in love with him, desirous and lonely, yes, but he was going through a tough time and I should try not to act too needy. I was very patient. I thought we were happy. I thought I was happy, but I wasn’t. And the fact that I stopped missing him so quickly saddened me, it meant the relationship had been over for me, too, and for quite a while. I simply hadn’t owned it.

I saw a therapist immediately, before I left my husband.  In my first session, I told my therapist that I was suffering from low self-esteem, that my self-worth was in the toilet. After all, I’d just gotten dumped out of a marriage because I was not whole. But by the end of the session, he told me a startling thing:  I possess very high self-esteem, I just think I don’t. We call that cognitive distortion.  

The distortion, it seems, came about when I got the bright idea to abandon my expectations. One should have expectations in a marriage, who doesn’t know that? Apparently, I don’t. I didn’t expect my husband to want to share activities with me, explore the depths of intimacy. I didn’t expect him to make plans with me for the future, be my health advocate in an emergency, I didn’t even expect him to want to be married to me forever.  Gratitude had displaced any reasonable demands I might have made. Gratitude so deeply ingrained that I felt I hadn’t the right to intone: “Please, sir, I want some more.” After all, I wasn’t a starving, abused orphan in a workhouse. I was well-fed and loved. What more could a middle-aged cripple want from a new husband?

And I had my own pride to contend with, my own fear of bad press. The odds were against us, so many women with a chronic disease or catastrophic illness are abandoned by their husbands. I didn’t want to become a cliché. Having expectations certainly wouldn’t tip the odds in my favor. And so I never protested when he wanted to stay overnight on his sailboat Friday nights, join a rock band, rehearse two days a week, and gig on the weekends. He had his freedom and I retreated to my office, seeking refuge in my online patient community of friends. There, I developed the intimacy my marriage lacked.

Now that I am single again, my friendships continue to nourish me, I still have the intimacy. And I’ve made plans to find my groove again as a writer, I’ve long neglected a book I started writing several years ago.  But what continues to haunt me is the notion of expectations. If I ever consider marriage again, I must bring to the table a list of expectations and a promise to myself that gratitude shall be reserved for acts of kindness only and never become the sole tenet of my marriage philosophy. The prospect of such a thing seems daunting right now, in fact, it upsets me to think about it.

The fact that it troubles me to imagine such a testament to self-worth means I have some healing to do yet.  And heal I shall.  My husband has given me a gift I would never have asked him for: I’ve gotten my whole self back, intact, for the most part. And I won’t squander it.  Not ever.


This concludes the 129th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on December 20, 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, December 18, 2012.

Comments for this post.

Carnival of MS Bloggers #103

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:

1. 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.
2. 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 #99

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 #54

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

Living a Normal MS Life and Cognitive Reserve

PE Class, Wildwood Flower, and Buttons
by Kmilyun at Bifurcate in the Road

Augh you might be asking what in the world do adaptive PE, flowers, and buttons have in common. The short answer is me LOL.

Hang on to the edge of your chairs now because this is going to be one of those real exciting blog posts that you surly spent hours awaiting!

First off I could take paragraphs to go into all the things I can no longer do. Or pontificating on all the stuff you can do and I can not or things I can do and you can not. Blah blah blah it is all lip service no? (in this case keyboard hitting).

Seriously, I can not be the only person with MS that finds it highly annoying to read about some great and wonderful accomplishment someone with MS has managed. That really does not cheer me up or make me strive to reach for the the stars. And it has the rebound effect (or is it affect?) of the inevitable comments from family – gee they climbed a mountain with MS so what is the big deal about not wanting to go camping where there is no running water and the closest restroom is 10 campsites down. Obviously you should be able to do that it is not like climbing a mountain you know!

Then again should I really feel bad and guilty or be berated because I can still drive, or make it up the stairs? Is not my personal perspective of suffering good enough. I somehow do not qualify? I have come around to the conclusion/belief that each and every person who overcomes any disability whether judged big or small is busy climbing their own mountains. And these mountains can be akin to pole vaulting over mouse turds to raising a truck over ones head. They all count.

And the above being the lead in to why I really like my adaptive PE class. It is a diverse group that gathers four days a week for an hour in the short bus trailer. I have yet to hear, see, or sense from anyone in the class that someone is better or worse or crazier or sicker than someone else. It is what it is. People who can’t talk use those boxes to communicate, the blind, the wheelchair bound, the mentally disabled, the goofs like me – we all just – well are.

It is the first place I have been with people who are not close friends that when my brain has gone south and it appears I took a stupid pill where I did not feel stupid.

Moving on without a segue into the next topic – I have decided to learn to play wildwood flower on the dulcimer. I have listened to a few renditions of the song. My favorite is June Carters last recording of it. I think I have figured out the notes – well a few might be missing – but I will see. It is not easy to find TAB notation for the old style noter and drone playing. The ones I have found on the net are for chording and finger picking. Big attempt for me as I still have problems with Go Tell Aunt Rhodie LOL But I am gonna give it a try.

Rush hour traffic here in Sacramento is the pits. I really dislike driving in it anymore. But the shop where the Luthier can put the strap buttons on my dulcimers does not even get in till 4:30pm. I am getting smarter here now so give some credit, I know that it would be a bad idea for me to install them even though I have done many over the years on guitars. So I put on my brave face, kissed the dogs goodbye and ventured out onto the evil freeway – at the start of rush hour(s).

I did not get lost, I did not crash, and on the way back home in the peal of the rush I turned on my truck radio. Yes, I made it home and listened to some tunes on the way. Not really that distracting because top speed was about 20 for most of the trip. The dogs were really impressed with the strap buttons and I suspect the fact that I made it home before doggy dinner time had a lot to do with that.

Now I can hold and play my dulcimers without them shooting out off my lap like rockets headed for a crash landing!
So today I just was, I made a goal, and I did something normal.

Cognitive Reserve Hypothesis
by Shauna at Bugs, Bikes, Brains

We all know that neurological disease can lead to cognitive impairment along with possible physical impairment. For many of us with MS, we may have noticed lapses in memory, ability to find the right word (tip of the tongue syndrome), unusual moodiness. Some of these things are part of the aging process, sometimes related to stress and/or hormones, and sometimes they are related to the disease.

How do we hold off these impairments? By the time we realize they exist, it may be too late as damage may have already been done. That's the scary part. However, we also know that the human brain is amazingly plastic and that we continue to learn things as we age, so continued brain stimulation by way of physical and mental exercise may help.

There is a hypothesis called the cognitive reserve hypothesis. It suggests that "enrichment protects against neurocognitive decline secondarily to disease" (from Wikipedia). "Lifetime intellectual enrichment (estimated with education or vocabulary knowledge) lessens the negative impact of brain disease on cognition, such that people with greater enrichment are able to withstand more severe neuropathology before suffering cognitive impairment or dementia." This is from the latest study of this hypothesis.

You can think of it this way. Two people contract a cold. One person is a health nut, eats right, exercises every day, gets the appropriate amount of sleep. The other person is a junk food junkie potato couch. The health nut has a good body reserve to fight off the cold within two days. The junkie, though, has no reserve and suffers for a week. The health nut has an "enrichment" of his health, the junkie doesn't.

The cognitive reserve hypothesis doesn't state that enrichment protects you from cognitive impairment; it simply lessens the negative impact. The two people I mentioned above both caught a cold, but one was impacted less than the other.
Cool, eh? I thought so. And it's related to the current study I'm in, the one about cognitive impairment and brain connectivity. You can bet your boots I'll be watching for more studies on this topic.

Let's face it. We have MS. We know it's neurological and degenerative, affecting physical and cognitive abilities. Some of the damage we have little control over. But there are also some aspects over which we do have control. We can get on a disease modifying treatment as soon as possible. We can eat right, reduce stress, get the proper amount of sleep and rest, stimulate our minds and exercise smart.

I have talked about exercising smart before but will sum it up for new readers or to prod those of you who may have forgotten. Stimulate your mind: do puzzles, but do different ones every day. Mix 'em up. The brain is stimulated by new things. You can do a Sudoku one day, a crossword the next, maybe some logic puzzles the day after, but mix it up. By doing the same ones every day, you become good at those kinds of puzzles, but the brain isn't doing anything new, so doesn't get the same stimulation.

Exercising smart is a pretty easy one. If you go for walks or hikes or whatever and don't have an Ipod or MP3 player, try doing multiplication tables as you exercise, compose a letter in your mind, try to recall a favourite recipe from your childhood. If you have a portable media player, listen to an audiobook, or Spanish lessons, or music that you normally wouldn't listen to. You can download free stuff from the library. Take different routes when you walk or hike. Remember, the point is to give your brain something new to work on. In other words, exercise your mind and body at the same time.

Another way to think of it is like this: your brain looks for patterns, whether it's music or words or what you see. These patterns are ingrained in our brain after years, kind of like the beaten down paths from base to base on a ball field. your brain will take the path of least resistance. If you expose yourself to something new and different, your brain first goes "What?" and then starts to search for familiar patterns. Not finding any, it gets down to the business of processing the information, beginning to lay down a new path. That is stimulation. And it's a good thing.

S.


This concludes the 54th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on February 11, 2010. 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 9, 2010.

Thank you.

Comments for this post.

Carnival of MS Bloggers #45

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

Inspiration, Humor, Good News, and Immortality

MS: What Will the Neighbors Think? 
by Jen of MS Strength

I’m remembering back when I lived with my friend more than a decade ago. She had a townhouse and was very mature: she also had a stable job, a mortgage that she financed on her own, a pet, a decent car—okay, she was 8 years my senior so it made perfect sense– but what I most recall about my time there was the family next door. A husband and wife in their thirties with a young son. We often spoke to the husband and saw the boy playing out in the front or back, but the wife was rarely seen. My housemate finally told me that the wife had multiple sclerosis.

I’d heard of MS and what it meant long before I developed it. Although before I began displaying symptoms, I had some preconceived notions about the disease. Don’t most people? Seems that to REALLY grasp the ins and outs a person might have to live with multiple sclerosis. So at that point in time the disease was still shroud in some mystery. Were people quickly disabled? Were there effective medications? And this neighbor barely left her home. I was a bit confused.

On Halloween one year, we (me being immature and dressed like a ghost and my housemate looking like a woman in her 30’s with a young trick-or-treater) stopped by the neighbors’ home and this woman came to the door. She was a bit slow, but she displayed no other signs that revealed her chronic, debilitating condition. And she was NICE! I don’t recall if I ever spoke with her again during my time in that townhouse. I am very close with my friend who still lives there, and she told me fairly recently that this woman declined, possibly because she had no outside or online support networks or helpful treatment options, and so her husband and teenage son moved her into an assisted living center nearby. This broke my heart: if I had known how isolated she was, and that I too would eventually have MS, I could have done more. But what do we really know about our neighbors behind closed doors?

When Bill and I moved to our home about 5 years ago, we immediately met some of our neighbors. The ones diagonally across the way were quiet and childless, like we were. The guy next door was also quiet and worked nights. I still find myself talking to him over our backyard fence in the late afternoons. Our next door neighbor was elderly and scattered, but clean and pleasant. The neighbors across the street seemed very friendly and outgoing and I found myself bonding a bit with the wife. She worked in social services. I decided to reveal my illness to her and no one else.

During a time of extreme stress a few years ago– I was beginning a disease-modifying med, in the midst of a severe relapse, and Bill and I had both lost our jobs— I remember my friendly neighbor calling to me from across the street to make sure I was okay. Thank you, I thought. I needed the interaction to feel less like an isolated housewife and more like a part of society. I was often by myself in MY house and I wondered what the other neighbors could possibly think about a young woman home day-in and day-out with no children.

It was about this time that I began to observe my neighbor’s husband, who was legally blind and used a stick to get around the yard. He was amazing! I didn’t pry into the reason for the blindness. Did it really matter? I would often see him ducking into a cab in the morning and returning later in the day. He was getting out and living his life and I vowed that I would follow his example. Being unemployed and on disability did not give me a license to sit back. I was well enough to still get out and contribute to society (although the recent bout with double vision gave me a healthy fear of getting back into the world.)

Very recently I spoke to my neighbor about an issue and we got on the subject of emotional counseling. I revealed to her that I saw her last name and address on my health insurance provider’s list when I was looking for a therapist to deal with my MS a few years back. I had no idea she was a clinical psychologist. She paused and said, “Jen, my husband is the psychologist. He sees patients on a regular basis during the week.” At this point my resolve increased ten-fold. This man, my neighbor and whom I knew so little about, was treating patients while at the same time coping with a serious disability. He would venture out into his yard, stick in hand, with what looked like little regard for what the neighbors thought. He sat on his porch and listened to National Public Radio. I even saw him jump in our river last summer and swim without any guidance.

I now know there is something within all of us–MS or not—that is indomitable and can thrive despite some of the roughest challenges. It is within me and it is also within you. And really: who cares what anyone else thinks!


Ah, the humor of our MS Bloggers. It pleases the soul and lifts the spirit. Sometimes it even causes bursts of laughter.

Joan caused such a reaction recently with her very simple post...

One photo.

One title.

One cute chick.

Joan of A Short in the Cord says,

"I Guess They Saw Me Coming!"

High School Reunion and Tysabri 
by Maryann and Montana

I was accepted by NORD for financial assistance with my Tysabri co-pay, so I will begin the infusions September 25. I can't wait! I feel so very positive about this drug; that it's either going to improve some of my symptoms or, at the very least, stop the progression. The people at the TOUCH program who handle Tysabri patients are very nice and caring. They sent me a tote bag, a nice red fleece blanket, and lots of information and resources about Tysabri.

Time to go work in the garden on this beautiful day. I've planted my first ever winter carrots, and already the feathery tops are an inch high. I have so enjoyed my five little gardens! I had enough tomatoes to share with the neighbors, and for us to eat nearly every day. I even made two batches of tomato soup. However my favorite, after a tomato sandwich, was to peel the tomatoes and chop them up, then add olive oil and balsalmic vinegar and chill. Now, that is delicious! I also had flowers (I grow nearly everything from seed) called Asclepias that have a beautiful red, orange and yellow bloom. These get about 3' high, and they attract Monarch and Black Swallowtail butterflies.

The five little gardens, plus the potted plants on the deck, were just enough for me to handle. I do a little bit at a time so I don't run out of energy, and I still get some exercise and fresh air and sunshine. Plus, I get a great sense of accomplishment growing and harvesting plants. Montana is always out with me in case I fall, and DH pokes his head out once in awhile to see if I'm okay. They keep watch over me, but not in a pushy way. I love them both for that.

Embracing Mortality, Living Immortal.... 
by Linda of Brain Cheese

I was 9 years old when I learned about mortality...the lesson was during a time in my life when I should have been allowed to continue to believe I could fly, if only I learned to flap my arms fast enough. Nine is awfully young to be asked to give up magical thinking and one's belief time is eternal...or at the very least, hoping the summer season would last forever without school.

It was the end of September in the fall of 1973 when I discovered I was vulnerable. It was this particular fall, like no other season, I was suddenly forced to believe my body was not invincible and I was merely mortal...a fragile human being walking on the egg shells of time.

On a mildly warm fall day, I was playing tag football with my best friend on the farm, when I gradually began to feel "weak"...I was having trouble standing without fatigue and the game drained all of my energy. It was only a few hours later my mother picked me up and took me home from our slumber party...I didn't really want to leave, but I felt strange and very tired.

Over the course of the next 24 hours, I developed what my mother thought was the stomach flu...in 1973, my family not only didn't believe in using modern medicine, they simply couldn't afford it. So, I was kept at home feeling very ill and vomiting anything I ate...mother still made me go to Sunday school that day, thinking I was only feigning illness to get out of paying my respects to the Baby Jesus. After all, I HAD faked illness before and successfully been allowed to stay home from church.

The next day, I was allowed to stay home from school because my temperature "didn't feel right"...in the days of the old mercury thermometers, my mother still felt the back of her hand was a more reliable gauge of fever than science. EP (my father) had a short business trip planned to the city 100 miles away, so my mother loaded me up in the van and we all drove out of town...still believing the stomach flu would pass as quickly as it had set in.

By the middle of the afternoon, with my parents in a store while I rested in the van, I suddenly had a strange sensation something was terribly wrong in my body...and I was frightened. I needed to find my mother to let her know I was becoming sicker, so I tried to walk into the store, collapsing at the front doors. Someone alerted my parents to the lump of flesh balled up outside and my parents came to scoop me up...rather than stopping at a hospital in the city, they drove the 100 miles BACK to our farming village to consult with the doctor in a nearby town...I heard my mother put the phone down and try to tell EP calmly the doctor had said to take me to the hospital...and then I passed out again.

I recall being quite alarmed when my father/EP, who was not known for affection, lifted me out of the car at the hospital and carried me into the emergency room practically running...I remember being relieved I was not asked to walk in myself. The doctor met us at the ER, took one look at me, poked my abdomen causing me to nearly pass out again, and uttered the words, "Prep her". I had no idea what those words meant, but I could sense the fear on my mother's face. The last thing I remember is having my arms strapped down out to my side in a strange crucifix fashion while staring into bright, hot lights above...I was screaming loudly, but it was as if no one could hear me...or perhaps the screams were only in my mind.

When I eventually recall being conscious again, I could hear the hum of some sort of machine beside me, and saw my mother crying in the chair across the room...I vaguely remember hearing the doctor telling her somewhat sternly, "Another few hours and she wouldn't have made it". A nurse was adjusting an IV line over head and, with what seemed like surprise in her voice said, "Oh, you're back!" She then very gently smoothed my hair away from my face and turned to tell the doctor I was "awake now"...it was so strange receiving such a gentle caress from a stranger.

I had narrowly survived a ruptured appendix and the ravages of septicemia that had infected my body over the prior 48 hours. Over the next 3 weeks, I would remain in the hospital, receiving IV infusions of various antibiotics, and trying to come to terms with my near death experience.

*******

At the age of 9 years old, I was forced to embrace my own mortality. I remember the exact moment in time the realization of impending death shadowed my thinking...I remember touching upon an understanding that shattered my innocence: I was merely mortal. I could and would die some day and I would cease to be. Illness could overcome me at any time, any place. My body was fragile and unpredictable. It seeped into my thinking quietly, yet with the force of a strong undercurrent, washing away my young foundation.

I believe it was this experience that continued (and continues) to color my view of life as I know it. And this very experience has remained always present in my unconscious, teaching me to be cautious because illness is unpredictable and Life is fragile...the experience shaped much of my adult life and how I have viewed and approached illness (and wellness) in my body, particularly my initial response to being diagnosed with Multiple Sclerosis.

The day I was diagnosed with MS, I embraced my mortality. Words like "fate" and "punishment" and various other themes of demise salted my thinking. I was angry and I was sad, sometimes dipping into all five stages of Kubler-Ross grief in a matter of hours. I recall believing I would most likely end up being in that 5% of the MS population who becomes wheelchair-bound in their first 5 years of diagnosis. I was terrified I would end up a ward of the State tucked away in some dingy nursing home and become either too disabled mentally or physically to *pull my own plug* so to speak. I did everything I could think of in my ultra-organized, anal-retentive fashion of thinking to "prepare" for the inevitable...I exercised every option available to make proper preparations for my eventual demise - from Living Wills to savings accounts - all to embrace my mortality.

Interestingly enough, what I have finally begun to learn in 45 years of walking on this earth and 6 years being diagnosed with MS is this: In embracing my mortality, I have neglected a key component necessary in preparing to die. I HAVE FORGOTTEN HOW TO LIVE.

These past several months while I have been away from this blog/the computer/email, I have been retraining my mind and body in the simple act of LIVING. In a world where the Grim Reaper has always been felt breathing down my neck, this has been no easy task. I remain rough around the edges as I continue to try new paths, new tasks, and learn new LIFE skills. But slowly, I have begun to feel the grip of MS and the squeeze of mortality loosening...I am beginning to feel as though I may once again fill my mortal lungs full of breath without worry the air may be the last I inhale. I am learning that, although the physical body is mortal, LIFE is eternal and will continue on long after my physical being ceases to exist...this notion has nothing to do with religion or heaven/hell/Karma, but everything to do with being present NOW...LIVING my life as though I am immortal.

As we turn the wheel of the seasons yet another round, I am keenly aware of the animal instinct to take stock in our bounty for the winter. Fall is always a time to begin looking toward the dark winter of our souls as we prepare for that quiet stillness. I feel comfortable moving into this new season, knowing this summer, I have harvested all I need to survive the chill of my unconscious being.

I know that I am merely a mortal...and I am CHOOSING to live life like there is no tomorrow. I am CHOOSING to live immortal...


This concludes the 45th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 8, 2009. 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 6, 2009.

Thank you.

Comments for this post.

Carnival of MS Bloggers #3

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

In Living with Multiple Sclerosis, Anne shares some of her history in and provides reasons why she deals with it the way she has chosen.

"for my husband and my two sons (the only members left of our small family).... for all those friends/acquaintances who tap my knowledge for their personal dilemmas.... for all those who benefit from my educational and disability advocacy.... for my own continuing education of things that matter to me most. And I am still here, after all these years - good, bad and indifferent - and living with Multiple Sclerosis."

For every MSer, the time will come when you must decide whether To Tell or Not To Tell. Depending on what stage of the disease you are in, it is an important question to consider. Anne, from Disabled Not Dead shares her experiences, including some of the disappointing outcomes.

"After dinner, we sat with dessert and the conversation came up again. I then told her about MS and how it affects me. She said, "Anne, I was afraid you were going to tell me you had MS. My mother died of MS." I told her that people rarely DIED of MS, that usually it was a complication FROM MS that killed MS victims. We talked as we cleaned up the kitchen and she turned to me and said, "I don't see how I can remain your friend. I saw what my mother went through and I don't want to see it or go through it with you. I just can't handle it, Anne."I told her that she wasn't as good a friend as I thought she was and we said goodbye and left. We have never seen them again since."

Having chosen "to tell" Callie, blogging at MS My Way, received numerous questions from her co-workers who were curious to know How Was I Diagnosed? Apparently her experience is quite typical and the details may sound familiar to those who have been there. Certainly, go take a gander and see what Callie has to share.

So How Did I Get from There to Here? asks Mandy from MS Maze.

"Five years ago, I had a well-paying full-time job with benefits including health insurance, 401k, a bonus, paid holidays and sick days, and three weeks paid vacation. I had responsibilities I took seriously, thought nothing of putting in extra hours when required and occasionally traveled for business. I was energetic and enjoyed my work. Today, I have a part-time, hourly-paid job with no health benefits, no 401k, no paid holidays or sick days, no paid vacation, and no reason for a bonus.

So how did I get from there to here in five years? A few things contributed, but multiple sclerosis is THE reason I find myself in this position...."

UK blogger, Shirl contemplates "Sleep, Perchance to Dream - for England?""Please excuse the mix of sayings here. Nothing wrong with sleep in itself. It's a good thing. But sleep for me has become a bit too much. As in, I'm having an excess of it and not enjoying it. So, it's for England. As in boring sex.

Tomorrow is another day...except it's here already...where did yesterday go?"

Blogging at Sunshine and Moonlight, Kim describes her frustration as she wonders if she's Robbing Peter to Pay Paul due to her MS.

"...I told the hubby that I felt I was losing myself. Each day, little by little, I was changing. I didn’t like what I saw in the mirror that morning – a tired, young woman, whose spark was quite dim. A young woman who was robbing Peter to pay Paul many different times a day.

I told him that I feel different; that I’m not the bubbly and silly Kim any longer. This, of course, worried me deeply. I will not let M.S. take my spirit. I keep saying that sentence over and over again, but I realized this weekend that M.S. has changed me. So, like everything else, we talked it through."

What could be Scarier than Psycho?
...well a bathtub of course.

Concerned with the effect heat may have on her MS symptoms, Kim says, "I haven’t bathed in 63 days. I don’t use the Jacuzzi to actually “bathe” though, that’s the purpose of the adjacent shower. So, yes, I’ve showered. I just haven’t enjoyed a relaxing bath in over two months."

At BugsBikesBrains, Shauna shares This is My Brain on Drugs ...including photos!! Her story of acceptance is inspiring.

"MS is uncertain, a characteristic about which we MSers like to complain. We don't know what each day will bring. You know what? I realized that this characteristic is something I should celebrate. I may not know what's going to happen, but it just might be great. And I know I have many tomorrows left.

So as much as I, like the rest of humanity, don't like change, I will celebrate my ever changing disease and do what I can do to make a difference."

Jim shares DEEP Thoughts regarding living with disability (deafness), disease (multiple sclerosis), and a spiritual relationship with God in Sunday Morning Spiritual Thoughts: Striving through bumpy road.....

"God's knowledge of my own discouragements are more than just knowledge; His knowledge is more personal, warm, and compassionate. He knows every pains I have been facing. Inside me, I know I am not alone because He is with me. Making a strong conviction to decided on what is affecting me, my attitude is to move on by living in faith. Accepting God's purposes and plans of God however He sees fit in my life. My faith is to believe Him and allow Him to adjust my life according to His will. I am to be aware of obstacles and hindrances I would be facing throughout my life that will throw me off balance. What should motivate me is like an athlete who trains for the Olympics to win a gold medal with such self-discipline and willing to face the challenges."

Jim's blog has become one of my personal daily reads.

So finally, you are reading this for many possible reasons. Perhaps you have MS or know someone living with MS. You enjoy discovering new blogs. Maybe you are a healthcare or policy expert.

Recently here at Brass and Ivory, I asked the question Why My Blog?!! and wondered how this blog will make a difference.

"For this, I don't really have a good answer yet. I didn't start out with lofty goals of being a patient-educator or a patient-advocate. I'm not an owner of a healthcare consultanting company or a political pundit. Nobody is paying me to blog, conduct research, or discuss issues surrounding healthcare or multiple sclerosis. My background is in education but I have never been much of an activist, always preferring to stay in the background. I do enjoy interaction, love comments and increased traffic, and hope to be able to use my growing expertise to help in some humble way."

So I thank you for helping me to understand the 'whys' and envision the 'hows' of communicating here, online, for myself and with each of you.

The next Carnival of MS Bloggers, a valentine special, will be hosted here on February 14, 2008. 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 12, 2008.

Thank you.
Comments for this post.

Images from National Gallery of Art, Washington, D.C.