Wheelchair Kamikaze: Why Must Being Sick Be Such Hard Work?

Wheelchair Kamikaze: Why Must Being Sick Be Such Hard Work?: Being sick sucks. Of course, this notion is self-evident. Nobody in their right mind wants to be sick. For those who are otherwise complet...

Arggh - who do you TALK to?

So here's the thing.
I'm losing a great deal of my ability to walk.
This could be because I haven't been as good as I was about going to the gym. Or it could be progression of my disease. Or maybe I've been too bad about my meds. Or I could have something else going on.
So I call the MS clinic.
They tell me to test for a urinary tract infection. Never mind that I have only ever had one of these in my lifetime and that my symptoms are more on the urinary retention side of things. No infection symptoms. Once you've had one of those, well, they are noticeable.
But still I will smile and go forth with my little jar of pee to see if that's the problem. Of course it won't be.
Then I called to Copaxone people today to find out about whether I could skip my shots during my trip to Cuba.
It's going to be a pain to carry needles across that border and keep the medication cool and remember to inject myself every day. And then carry the syringes home. And yes, I do have a "permission to carry" letter, but it isn't in Spanish.
"Oh no," she says. "You have to take it every day or you will get more relapses!"
Well, see, I don't have relapses, so to speak. I just slip gently down, losing a few steps here, having more spasms there, going numb bit by bit. I've been lucky enough to never need hospitalization.
And truth be told, I've missed more than a few of my Copaxone doses.
So I said, well, it doesn't seem to be doing anything for me, anyways.
And she said, "oh you won't feel it doing anything. You'll just be less sick than you would otherwise be."
Well, there's the rub, isn't it?
You can't sense any benefit? Well you still have to take it because the alternative is thrust at you like a threat if you even mention it.
What a wonderful marketing trick. Take it, you won't notice anything. Don't take it and you may completely crip up. Wow. So, if they figure out that your symptoms are getting worse and you dare to mention you have missed a few doses, well, you know whose fault it is going to be. Not the drug company, whose meds don't slow progression, no no. It will be my fault, of course.
I even asked her if I could double up on the dose for a few days before - they are doing a study now looking at taking double the dosage for three days a week as vs the same dose every day.
"Oh no," she said. "That study hasn't been finished yet!" But given that they prescribe the exact same dosage to a 99 lb kid and a 250 lb man, I can't imagine doubling up the dose would be a problem, risk wise. And given that it doesn't slow progression, what's the big deal? The nurse told me it did. Studies differ.
So who do you speak to to get an answer?
Your MS clinic, who are overworked and much more focused on the really ill and their research subjects?
Your drug support nurse, whose main role is to keep you hooked on their drug (though my usual nurse is not like that, thank heavens, or at least is open to discussion)?
Your peers? Sometimes that helps, but there's a lot of bad advice out there.
Research? If you can find it and understand it...but remember the publication bias and the funding issues that lead to the tendency to promote big pharma solutions compared to other things...
It's lonely trying to figure out what to do when living with a chronic disease that isn't understood.
But sometimes, you just wanna...

Pain and MS, including those with an axe to grind

Oh legs. Legs'o'mine. Couldja leave me alone just for a leetle while?
I still don't get it - why is there so much numbness plus so much pain? Surely they should block one another out?
But no, here I cringe, legs repositioning every few minutes while I struggle to feel my fingers on the keys.
I do wish I understood this disease better. I wish anyone understood it better.
And thanks, CCSVI advocates for once again sending me an unnecessarily long and gruesome post to my CCSVI, the terrible temptations post. Every few months you send me one. It's tedious.It's advertising, pure and simple. Usually I delete the comments, made as they are by some mailing robot that spasms, like my legs, unexpectedly, and shoots out blather.
I've decided to allow this one because we are at the point of doing a study here in Canada that looks like it will be carefully designed enough to actually give us some answer, unlike all the observational studies done before. This study will assign patients with venous "obstructions" to control and experimental groups and do mock procedures on the controls. Everyone involved will be blinded as to who got what procedure. then, a year later, the groups will be switched, so everyone will end up with the procedure (important as it is an invasive experiment) and the same person can be evaluated throughout the experiment for effects. I don't know if they are following the procedures with physical therapy, my own personal thought about how the benefits are accrued from the procedure.
So in two years, we should have some hard research results.
Best thing is that the doc who is leading the study, while one of THOSE( neurologist) types, is also one of the most caring, considerate, and thoughtful neurologists I've happened to meet. I've worked with him on the Canadian MS registry project through CIHI and he is a good man, not given to self-aggrandizement, prone to listening to ideas, and open and easy to speak to. I'm hoping the centre in Montreal is going to be led by my other favourite neurologist, another gem of a doc. I'd mention their names but I don't want them to be swamped with people demanding care to the point they burn out. Nice neurologists are not common out there. tremendously smart and knowledgeable ones, yes, but pleasant and friendly, not so much.
Perhaps, unlike my numbness and pain, niceness and smartness don't normally occur together.

But in some lucky or unlucky instances, they do.

Doin' Drugs - 2

Anyone who has dealt with MS knows it is basically a game of gradually increasing piles of drugs.
Disease-modifying Drugs (DMDs) - which we think do something.
Anti-spasm drugs- which may not help spasms until you are passed out
Drugs to keep your sphincters closed
Anti-depressant drugs: which make you dizzy and confused
Anti-pain drugs: which knock you out
Drugs to counter the effects from the above drugs, which include vertigo, incontinence, weakness, sadness, poverty, etc, etc.

Well, maybe not those last two...

It is always tempting to just toss the drugs away and try to manage the illness without them. A few muscle spasms will teach you to rethink that; the inability to walk will make you grab your DMD needle like a heroin addict and gratefully shoot up in the hope that you can still stagger a little while longer.

And then there's the illegal drug, that always makes me feel like I'm making a pumpkin spice latte or something. The one requiring grinding and special machinery and inhaling. The one that, surprisingly, works, eliminating muscle spasms quickly, without the cheery side effect of me peeing my pants, a freebie with the other antispasmodics.

But I need special permission to have that drug. So I'm starting the effort, with the support of my doc, to get some legal stuff. It's a bit frightening, given that our current government finds it more evil than outright murder. I have to send them passport-type photos, and become officially registered, which I wouldn't have to do if I had a long gun. Odd, no?

Just sayin'

Mad Sow, Mad Cow

Some of you blog readers may wonder why I refer to the blog as "Musings of a Mad Sow". No, I don't think of myself as an angry pig, though, honestly, if I gain any more weight...
No, it's all about Denny Crane on Boston Legal. Right before I was diagnosed, I got hooked on the show, particularly enjoying when Denny would say something completely irrational and then gesture to his head and say, "Mad Cow", as if that explained everything.
http://www.youtube.com/watch?v=Zz0H-Py2rjc&feature=related

One of the signs of MS in me was the loss of the barrier between my interior and exterior monologue. You know, that inner voice that says inside your head, "This guy is a jerk", while on the outside you smile sweetly and say all the right things.
I was in management, so my straight talking almost led to me being escorted off the property
It was quite agonizing, really. I'd realize that my mouth and brain had betrayed me and try to retrieve or patch things up, but often it was simply too late. So, since MS had the right initials, I decided to try to redirect my mouth by pointing to my head and saying "Mad Sow".
Oh how I wish it would work.
For the most part, now that I am less stressed and have slept adequately, my mouth is under better control, but it's not anywhere near perfect. I am much more intolerant of foolishness than I used to be formerly and need to remind myself that being part of any bureaucracy is NOT a good plan. And yet somehow I keep ending up being part of them.
And my mad sow keeps putting her little hooflet in.
Like many of us with invisible disease, my physical symptoms are small - except for numbness and an inability to walk further than a block or so. But the mental ones are glaring, at least to me.
I was "gently reared" as they say, and I cringe at being thought rude. My dad didn't raise me that way. But wherever those lesions nestle, they've liberated my tongue and tied up my Miss Manners. Maybe I need to follow that old African tale and dig a hole and yell my true feelings into it. Maybe then the sow would be appeased.

http://www.documentingreality.com/forum/f2/post-picture-angry-pig-72235/index3.html

Somehow I doubt it.

A Helpful Book

As a youngish and dating woman with MS, one of the things that has filled me with the most despair over the past several years is my loss of sensation in the...ahem...sexual areas. I consulted with my docs, whose recommendation was to place a bag of frozen peas over the...ahem...area in question and that that would help me feel increased sensation.
Well, I dunno about you guys, but frozen anything DOWN there doesn't sound too enchanting for me or the fellah involved. As one friend said, it's like going swimming in the Atlantic Ocean - cold at first, but okay once you're in...
Yikes.
Now, other than developing a jaundiced eye whenever I see a bag of frozen peas in the market, I haven't had much success with that advice. A friend of mine (who works with people with disabilities and their sexual health) and I got to talking. What if we combined the power of her knowledge of everything sexual and battery operated, and my nursing knowledge and the experience of someone living with MS, and we put together a helpful book?
Not a deadly boring one, but a light, useful one, with advice and drawings and some laughter and fun. That. we figured, could be a help to other people like me.
After all, MS is being diagnosed earlier and earlier, and it sounds gruesome to be sentenced to years and years without any idea of how to have a rewarding sex life. We deserve one, no?

But maybe that isn't what's needed. So we thought we'd ask you. In a short little survey, with no chance we can identify you, compiled on machines somewhere in the deep dungeons of the internet, impossible to trace. Well, maybe not completely impossible to trace, but I've got better things to do than find you. There are all those other frozen veggies to experiment with...

Here's the Blurb:

Dorothyanne Brown, a person with MS, nurse, and epidemiologist, and her
writing partner Karen Kalinowski, a Natural Health Consultant and Sex and Kink Awareness Educator, are collaborating to create a resource for people with MS and their partners about sexual intimacy. 

We've created a short survey, ten questions, to get a feeling for what your
needs are as a person with MS or a partner of a person with MS.

The survey is completely anonymous. We have no way to figure out who answers
it, we plan no cross linkage to any database or physician services. 

It will help us create a resource that will be most useful to you. 

Just click on this link and you will be taken to the survey:
http://www.surveymonkey.com/s/LSLN9XN

Please share widely with others with MS or their partners. Help us create a resource that will work for you.
Questions? respond here or email msandintimacy@gmail.com
And thanks!

Why going to the gym is so entertaining, or not...

Okay.
I've been going to the gym seriously for months now. Three times a week, give or take, an hour at a time, weights and machines and stretching and all that stuff. I usually come home and collapse, body in spasm and totally wiped out. The thing with MS is I don't get to progress upwards like "normal" people - as I exercise, I feel like I should be getting better, stronger, quicker ("We can remake her, better, stronger...").
But it just ain't so. One day I cheerily work through a 30 minute elliptical session without dying. The next day I can barely do 10 minutes. I'm trying to increase my walking capability so I can go on this boat cruise in Newfoundland - which involves a 3 km walk through moose and bug infested territory. I can deal with the bugs, but outrunning a moose might be challenging, and I really don't know how they'll react to my walker...but the views look fantastic and I really really wanna go. So I struggle on, pushing my unwilling cramping muscles through yet another session.
Today I got extra exercise plotting the demise of an exerciser on one of those bouncy machines. She was doing extra knee lifts and swinging her arms around in circles and punching up in the air and lacked only the leg warmers to pass for Olivia Newton-John getting physical. She was working on the machine at level 15 and increasing the level every few minutes.
I wanted to push her over.
Just a little bit.
She was so damn perky.
She even had perky HAIR, for gawd's sake. I instantly hated her with a vile passion matched only by the vileness of my sweat as it flattened my non-perky hair to my skull.
What made it even worse is that my favourite gym guy, the one with the sexy accent, was flirting with her. The flirting was bad enough, but what I really envied was that she could do her high fast stepping while swinging her arms and listening to music and flirting back, without falling over! How the heck?
I was falling over walking on the treadmill. Slowly.
Totally annoying. I much prefer the overweight older men who sweat honestly and suffer along with me. We at least have the honour of our suffering.
Couldn't kill her lest I lose the fondness of the sexy gym guy. So I pretended to find her funny while I turned a delicate shade of green. Why the hell didn't I use my body more when it worked properly?
Ah well, too late, she cried, and waved her wooden leg (as my parents-in-law would say). I'm obviously going to have to find another reason to keep going to the gym. Hmm. Maybe this would work...
http://youtu.be/NOMOwyHCHmQ