26.7.10

to all those travelling for CCSVI and stem cell treatments

Oh, how I wish you wouldn't. There are so many people just out making a buck off of you. It breaks my heart. And I know about desperation about MS, really. My own life has been destroyed.


Offshore Stem Cell Clinics Sell Hope, Not Science

23.7.10

Every once and awhile, this disease scares me...

I know I've been lucky.  Since my diagnosis two years ago, my progress has been slow, almost benign, except for the weeks of fatigue, the more than infrequent difficulty walking, the numbness in my nethers, the confusion.
Last weekend I went to a lovely picnic put on by the local Chapter of the MS Society as part of their student summer program.  Almost everyone there was in wheelchairs or walking with tremendous difficulty.  Some used tubes in their mouths to push the remotes on their wheelchairs. Many needed help eating. It was sobering.
Today, I dragged my somewhat unenthusiastic legs over to the gym to try a workout - (I am going to beat this diabetes thing to death if it kills me!) (and I want to keep my muscles in as good shape as possible) they were dragging a bit and I was wondering if I could do it - when I passed a woman who noticed my MS walk T-shirt and said "good for you!" and explained she had MS.  She was in a power wheelchair with head support. When I told her I had MS, too, she said, "wow!  You're lucky you are still walking!". I agreed...
Coming back from my workout I joined a man in the elevator who was carrying a gym bag, so I asked him if he was just coming back from the gym, too (as I sweated profusely beside him).  He said, no, he was going later, and then he saw my T-shirt and jabbed me in the MS section of it, saying, "good for you!  I know so many people who have MS - you know Dan, downstairs?" I shook my head no.  He said "Well, he used to be okay, but he's in a wheelchair now..." I told him I had MS and he leaned forward, grabbed my sweaty head and planted a kiss on my cheek. "You poor thing," he said, "God bless you!"
I murmured something about "there are worse things..." and he said "No, this is bad enough.  My partner is so ill and she's younger than I am..."
It's like I'm getting a message from the world and the gods that yes, I should be more grateful that I am almost okay (and I am profoundly grateful), and yet, that I shouldn't count on it persisting.  Yikes.

20.7.10

Well, shoot.

So here I am exercising like a mad fiend, enjoying feeling my body react like a healthy person's would, enjoying the freedom of being able to walk a bit without having to think about it....
Yeah, it's been hot, but I've tried to keep cool, well hydrated, reasonable about activity.
And then it hit me - today - the awful fatigue.  It's been creeping up on me the last few days - I've been feeling more of the "nah, don't wanna"s and fewer of the "let's go!"s.  I've been crashing asleep in mid sentence and snoring the whole night through. I've noticed a sluggishness in getting up the last two days.
But today - the wall.  I dragged myself to my class this AM, worked blindly through it, came home, and too tired to eat, collapsed onto the sofa and slept the day away.  I'm still exhausted, since the joy of the MS fatigue thing is that it doesn't get better even after sleep.
I'm frustrated. And fed up. And feeling that same old sense of loss that comes whenever I am reminded that things just don't work properly in my body anymore.
And I'm reminded about why I am not at work. This fatigue was a daily thing when I was working full-time.  I was in a fog almost all the time, barely conscious, unable to remember what happened or went on, dragging myself from coffee to coffee to coffee to coffee.  And when I'm so tired, I can't think straight.  It's like I'm looking out through a tunnel - my vision blurs, my hearing seems less effective, I feel locked in to my interior.
It's a reminder, not a welcome one, but a reminder nonetheless. Life has changed forever.
Now to rest and heal and get myself back on track again....

19.7.10

What Causes MS? Or where do vaccines figure in all of this?

Just reading a thread on the very helpful site, Patients Like Me, where I routinely go when I want to ask a question that my doc would look at me sideways for asking.
They've been there when I wondered about which treatment to take, when my legs started spasming and no one seemed to think it was a common thing with MS, when I lost sensation.  They've been helpful, and they have additional sites for other diseases where fellow sufferers get together and share information. It's great to look up medications and see if others have been prescribed the same things, etc. Awesome resource.
However, it is filled with people who are desperate about MS and also somewhat uninformed. The latest post is filled with suppositions that vaccines caused their MS.  Now, we don't know what causes MS, so I can't be SURE they are wrong, but research says it is probably a combination of things - from low vitamin D, to infection with Epstein-Barr disease (mono) after age 15, to stress, to a variety of other things from genetic tendencies to environmental pollution. Maybe vaccines do play a part, but I hate to read these posts.
Why?  Because I'm a nurse, and I know what those vaccines prevent - diphtheria, where a thick membrane forms across your throat, disabling your ability to breathe; rubella, where infection during pregnancy results in a deaf, severely congenitally damaged child; polio, which leads to paralysis with first infection and often recurrent paralysis later in life; pertussis, which I've seen kill babies with exhaustion; tetanus, which paralyzes the lungs and can kill. They aren't minor diseases.  We've become casual about them because they are now rare, thanks to immunization.
My son is travelling through Asia and caught amebic dysentery.  He is taking pills to forestall worse infections: malaria, sepsis from any wounds, etc. But what is primarily protecting him are his immunizations, for hepatitis, yellow fever, etc etc etc. He is wandering safely through a literal morass of germs and creatures all hoping to feast on his remains. As am I, here in safer North America.
We have so many little bugs who are becoming resistant to antibiotics that immunizations are becoming even more important year by year.  I take my flu shots.  I need to get my tetanus updated (tetanus is in the soil and can getcha anytime - you need a booster every 10 years).  I can't prevent my MS or my diabetes or whatever, but I can do what I can to keep myself from being felled from diseases for which we have the prevention available. Why wouldn't I?
I wish I could finger the blame for why I have MS.  There isn't any in my family; I don't know why I have been so lucky.  Inside myself I blame a bad case of mono in College and my second to last boss, who stressed me to breaking point. But I don't know.  It doesn't really matter in the end for me, though I'd like to see the cause identified so it could be prevented for others.
But fear of vaccines has its own dangers...

15.7.10

Lawsy, how I DO hate the summer!

I never thought I'd get to this, after a winter of grey and grey and suffusions of grey, but I hate summer.
I hate the relentless sun, the humidity that makes my sweat just lay on my skin with nowhere to go, the hot breezes, the sounds of lawnmowers and trimmers and motorcycles and wonky air conditioners. I crave shade and spring and fall and the kind of air that enlivens me rather than the heat that makes me lie about like a pole-axed sheep for most of the day.
The plants bug me.  They are so untidy. The heat and humidity have caused them to grow all leggy and unattractive and only the weeds seem to be winning the battle for the sidewalk cracks.
I hate wearing clothing this time of year, and yet, it's expected. I hate seeing people who deny these expectations. Men, for example, who wander about shirtless.  It pisses me off, me in my bra and shirt required by law (and, frankly, common decency, as an over 50 plump woman does need to shield somewhat).  Mind you, over 50 fat men don't seem to feel the same requirement.
Every day with MS, the heat saps me more and more, to the point where I feel lucky if I want to do anything.  My brain glides into neutral. Then reverse. Then it falls off the cliff.
I loll about.  I read novels. I forget what I read. I drink water. I loll.
Making food seems unnecessary and unpleasant, so I live on grapes and slices of cheese.
I get impatient with the body and brain that seem to only want to lie about, but I'm trapped, pinned like a butterfly to a board. I force myself to exercise every morning, before my body gets the message, but crash into dead sleep at eight every evening. My feet are cramping more and more, legs twitching more, as the heat gradually shoves my MS buttons.
I long for those first few cool breezes of late August...