February 27, 2010

medication mambo

One of the biggest thrills of being a "chronic disease" person is that people come at you with drugs for every little thing. Some people choose to take them. As for me, I'm a bit scared of the interactions, the risk of iatrogenic disease.But sometimes one needs the medications.
I know I need the Copaxone, or some disease modifying medication. Why? It apparently reduces flare-ups and damage from the disease. Apparently, and only by 30%- so it's not overly convincing...and the daily shots are toxic enough to my tissues that I have bruises and lumps under the skin for weeks afterwards. Of course, I could get a different drug, with its own set of problems.
And then there's the antidepressant that made me more depressed. Taking it made me suicidal, but no one thought of taking me off it - just told me to take more. Which has resulted in an increase in my blood pressure, now requiring more medication....
So, after consulting with the docs, I am now off the antidepressant. It's lovely, though I am perhaps less so. I've developed a tendency to swear more frequently, and am somewhat more easily angered. But why not? Some things are angrifying! And I like being able to feel emotions. It's novel.
Of course, the antidepressant was Effexor XR, one of the very very worst to withdraw from. My doc tells me to expect at least 2 weeks of hell. Many people can't take it and end up going back on the medication to deal with the side effects. I'm not enjoying the dizziness, the fevers at night, the feeling that my head is going to pop off, the muscle spasms, the general feeling of unreality. On the good side, because I have to deal with so much of that already with MS, it doesn't seem too unusual...and every day I have a little clearer morning, a little more of me rallying around.
In any case, I feel like the queen of drug induced illnesses, always wondering how much of the crappy I feel is due to the medications people give me. Is it all worth it?
And even more puzzling, have any of these drugs been adequately tested in women? Or are they all tested in healthy male subjects, just cos it's easier not having to deal with all those hormones?
Now that's something worth getting angry about!

February 26, 2010

Approach/Avoidance or rubber-banding and MS

Having MS requires a certain amount of elasticity. And ricocheting. And it must be very hard on those around us.
Recently I applied for a job. I just did the interview, and in doing the interview I realized the following:
1. I am very qualified for the position
2. I have pertinent experience, knowledge and wisdom to bring to the position.
3. I have done a lot in the years I've been in the workforce, after starting off the kids and attempting to support my ex (didn't do that so well, but there you go...).
4. Despite all this, my MS riddled body won't let me do the job. A job I otherwise could be good at.
So once again, I am brought up short, at the fullest tension of the elastic, and then sent snapping back into my MS box at high speed. I did the interview, but collapsed on the way home from fatigue. Today I'm toast. As they used to say back in the day when I was functional.
I feel for my friends, I do. They don't know how to support me. I try doing things, and they are supportive. They know the pre-MS me and hope like crazy I can get back there. When I try stuff, they sometimes tell me that that's good, it's good not to let my disability rule my life. I laugh rather quietly at that one. I'd give good money to tell my MS not to rule my life. UNFORTUNATELY, it still does, whether or not I give it permission.
Then there are the other friends, perhaps wiser, perhaps less optimistic, who tell me gently to enjoy the life I have now and stop trying to get back into the old one. They know about the elastic lure of the familiar, the fear of the slap back. My wonderful drug company nurse, Bonnie, bless her heart, told me gently that "many MS patients find that they are just all around better off letting that old life go, and are healthier and happier..." (I paraphrase, and she was much better at saying it than I). Sometimes I listen to them, and I decide to throw myself into my new, non-nursing, non-management, non-health care advocate life. I stop reading about health news, I go to ground and wallow in writing stuff. I try for joy.
But then an opportunity comes up, like this job I applied for. I have a look over my past accomplishments, and by jove, I've had a few. I stretched my career elastic pretty far, but there should be room for more. The lure of earning a salary again is big.
Being on paid vacation, like napping, becomes less of a joy when it is mandated. And tight on the money side...
So I stretch. And I fail. And it hurts again, to realize all that I've lost. To realize that this IS my life.
What is left of it.
Oh, and bonus, I can look forward to years of it, gradually getting more limited.
Is there any better reason to fly into fancy and visualize getting back into the pertinent workforce? Or alternatively, buying a motorhome, and running away from everything? While I can still drive?
Oh, escapism. How I love it. Especially in February.
Despite the gloom over my interview, the sun came out today, and shone brightly and warmly. It is a good thing some things don't depend on me.

February 19, 2010

Exercise and MS, or hey, let's help ourselves!

All the noise and chatter about CCSVI and the demands for treatment immediately ignore the things that we can do for ourselves, right now, whether or not you believe in the reflux theory or the autoimmune theory.
But like many things, it involves personal effort, not an automatic cure applied by someone else.
And it isn't easy. And it often hurts. And our MS bodies seem to not want to do it.
It's exercising. Yeah, we all are losing our abilities to do this, we are all less able to exercise whatever muscles we have, but the ones still left can and should be exercised, even if we feel too tired to do so.
Today I was in too much pain to walk earlier this morning, but once I'd thawed a bit, I was able to do some exercise, and I feel better for it. I was sore because I'd overdone the exercise thing the other day, but I'll probably do it again. I feel an overwhelming need to do so.
First, aerobic exercise pushes the blood around my body. This is good for my leetle grey cells, as Poirot would say, and if I do have a blockage, the increased blood flow will inflate those veins as well as a tube. Plus my lungs need a workout, and I like sweating.
Second, the strength and stretching exercises, like Yoga, go a great ways toward stopping my spasms and twitchings. Worth the 30 minutes of wondering about whether I can make it to stop the hours of discomfort from the spasms.
Third, exercise helps reduce inflammation, one of the problems with MS. I figure the less brain inflammation, the better.
But fourth, and most important, my ex-mum-n-law is dying from ALS. She was just diagnosed and is slipping too quickly downwards. Yet, each day SHE exercises. With the scant muscles and air left to her, she exercises. She's 84, and breathing is a big challenge these days.
How can I look her in the eye and say I was too tired to exercise?
I can't. So I'm going to push my weary body, even when sore.
And you know what? I am already seeing a difference - in my thinking, in my emotions (wii punching is very good for that) and my muscle and core strength. If that delays my inability to walk by one day, I'm all for it.

So, maybe, instead of asking for a push-button cure and blaming everyone around for not coming up with it soon enough, why not work on ourselves?
(Can you tell I am totally totally fed up with the venom over CCSVI and the attacks on neurologists? Excuse me, I have to go do some more punching. If nothing else, all the frenzy will keep my upper arms fit.)

Need help? There's an excellent DVD available in Canada called "It's Your Choice". In the US you can get a DVD on yoga for people with MS. Tai Chi and aquacize is available everywhere. Walking helps, stretching helps. Just moving helps. Get hand weights and use them when you're watching TV. Or use canned food as weights. And for heaven's sake, use some of the energy you are wasting on calling names on the webboards and move your body. Even if CCSVI is a significant help, we'll still need to do a lot of work on recovery ourselves.

Exercise has protective effect on brains of multiple sclerosis patients

Friday, February 19, 2010 11:00 IST
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WASHINGTON: Exercise is good for the brains of patients with multiple sclerosis, a new study has found. In the new study, researchers found that highly fit multiple sclerosis patients performed significantly better on tests of cognitive function than similar less-fit patients.

In addition, MRI scans of the patients showed that the fitter MS patients showed less damage in parts of the brain that show deterioration as a result of MS, as well as a greater volume of vital gray matter.

"We found that aerobic fitness has a protective effect on parts of the brain that are most affected by multiple sclerosis," said Ruchika Shaurya Prakash, lead author of the study and assistant professor of psychology at Ohio State University. "As a result, these fitter patients actually show better performance on tasks that measure processing speed."

The study, done with colleagues Robert Motl and Arthur Kramer of the University of Illinois and Erin Snook of the University of Massachusetts, Amherst, appears online in the journal Brain Research and will be published in a future print edition.

The study involved 21 women diagnosed with relapsing-remitting MS.They were compared with 15 age- and education-matched healthy female controls. The study assessed fitness, cognitive function, and structural changes in all participants.

February 16, 2010

Pinga ponga eyes

I've always loved the cookie monster, and even forgive him his recent mad descent into liking fruits and veggies and only the occasional cookie...sigh. Fun has SO gone out of childhood.
But what I loved most about him were his mismatched, swingy pupils. He always looks vaguely crooked-eyed, and this was part of his charm.
Until it happened to me this Sunday. There I was, at a fun lunch with friends and suddenly my right eye decided it was just fed up with all this hanging around with binocular vision thing. She wanted to be free from Mr. Left, so off she went, shimmying away. Understandably, Mr. Left was a bit hurt, left out, as it were. So he's decided that he won't play with Ms. Right. (why they are male and female, I dunno. Maybe that's part of the problem....)
It's an interesting feeling, not having binocular vision. I've always had serious astigmatism, with one eye shortsighted and the other far sighted. It's been manageable, even without glasses, because the eyes would take turns taking the lead.
Now, however, they're in a fight for domination, and I don't like it. Riding in the bus today was an exercise in bizarreness, as they duked it out.
It's been two full days now, and I'm hoping they will settle down soon.
Worst thing is that it makes me nauseated, so eating cookies is out as a distraction.
Cookie cookie cookie, where are you now? And hey, don't gesture at me with those carrot sticks! Or whatever those things are...all three dozen of them.....whooooooo.

February 10, 2010

Juggling through disability

Strangely, this photo came up when I googled cat juggling - and yet....these are dogs....
Sortof speaks to my experiences (long and ongoing) with disability. Here's the latest:
For good or ill, I have been approved to get disability through Canada Pension Plan. This tells me that yes, I am disabled (every time someone tells me this I grieve the more...) but it means I get a certain amount of money through our social security system.
Do I see it?
It goes to my long-term disability provider (insurance from work), so I am no further ahead.
Oh, and because I received the abysmally low "Employment Insurance" for a couple of months while waiting for the somewhat more tolerable disability insurance (a whole $1700 a month for EI, about twice that for disability, thank heavens), I may have to pay some of that back thanks to being approved for disability.

Good news is, I can earn SOME money on CPP disability - up to a whopping $4000 a year. Bad news is, I can't on my work disability. They would prob claw it back.

And biggest treat of all, the whole mess is taxable! Hoo hah! So if I ever step just that little bit ahead, I am totally screwed. I'm close enough to the tax cut off where any extra money means another percentage being taken off.

I'm puzzled. Everyone KNOWS that people with disabilities such as MS have the prospect of increasing disability and expenses hanging about all the time. It doesn't kill us, but, like giving up cheese and chocolate and wine to benefit your heart, MS just makes life seem longer.

Seemingly much longer if I can't work. Or increase my income in any way without penalty. Here in Canada, we can't write off our mortgage interest, so even buying a home is a problem.

So it is a bit like trying to juggle cats, only to find out they are dogs after all....

February 6, 2010


Before I was diagnosed with MS, I was diagnosed with the depression associated with MS. Of course, they didn't know that that was the cause then - they thought it was garden variety depression and I was quite willing to accept that. Trapped in a marriage I was desperate to leave, numbed down to anger, frustration, sorrow, in pain and with weird body symptoms, I thought this was maybe the solution, and I went on and took the suggested antidepressants with hope.
They worked. They kept me from going mad, they gave me the strength to leave my marriage, to change my job, to continue confident although by then my brain was operating at 20-80 capacity, uncorrected.
MS gave more reasons for grief - losing my capacity to work, making poor judgements, financial losses, physical changes I was unable to ignore, and my change from healthy to patient. I handled it all with aplomb, rarely crying, rarely allowing myself to wallow completely until the emotions would be so strong they sent me into suicidal despair. Even then I shook myself off, wiped my slightly weepy eyes, and went on. Movement equaled coping, and as long as I didn't pause, I could think I was coping okay.
Lately, this hasn't been working for me. The numbness of my body, now total, is also matching the numbness in my heart, in my brain. I've developed such high walls around my garden of grieving that I've needed to throw all other emotions in there - joy, love, hate, adoration, belief, everything.
A couple of things have started knocking at the walls. First, my ex has decided to remarry someone who I know deep in my heart is bad for him. I am amazed that I care, and that I am so so angry at him for the way he treated me, still, and for the fact that he has found what he feels is love and I have been unable to. I don't want him back, no no no, but it is galling he has fallen in love with someone so different from myself. And that he grants her things that he denied me, without question.
Second, I lost some people very dear to me lately - a favourite aunt, a sweet uncle. Their deaths made me revisit the deaths of my parents, so long ago, and also ungrieved (see ex, above). They also made me revisit other relationships that haven't gone well, or that I have lost.
Also, a very clever woman asked me yesterday about my "well-guarded" status - and asked about grieving about the MS. Of course I started draining like a leaky faucet right there and then. Yes, I am totally guarded, that's my problem, and the thing about MS is that you have new reasons to grieve every day. Little losses, little gains that are illusory, little hopes that get crushed, and now little fears that grow up in their place. I've spent so much time pretending I am okay, with everything, that I almost believe it, but not really. I joke about losing my sensation, my continence, my balance, my ability to stand. But it isn't really funny and perhaps I just need to do some private grieving and let it go.
Maybe I'm like Yellowstone, that huge volcano in the middle of the US. If it were capped, it would build up pressure and explode, rupturing most of the US and destroying all about it. But it lets off steam, all the time, through Ol' Faithful and various other geysers and little leakages, so it will likely not explode. Maybe I should let go slowly, rather than slapping on a lid and a smile, joking my way as I fall apart.