The uncaring health care system, or why neurologists seem so unsympathetic

I know, I know. We've all heard the stories about neurologists who treat their patients like objects of no interest, who never seem to take your pains and troubles seriously, who are in and out of the clinic room in 2.2 milliseconds.

They seem to be everywhere.

I used to get all hurt by their reaction, too - I'd leave muttering and cross at the world and hating the neuro in particular. Of course, I was going to one of the top neurologists in the country (and he knows it), and was profoundly uninteresting to him as I was still walking and talking.

In my mind I was degrading by the minute. But then, he wasn't evaluating my cognitive abilities or my depression. He was only interested in my walking. Which was something I didn't understand until I looked into MS studies and found that, at that time, that was the only assessment routinely done. (this is changing, thanks to Bart's MS save the hand focus).

But I've been ten years with this disease and I've gained some perspective. And some sympathy for the neurologists. (Not for my one from before - he truly IS an ass, and some are) I've worked with neurologists on projects, I've participated in research, I've made my own panicked calls to the clinic begging for help. What I've discovered is that they are an interesting and interested group of individuals who really do have a dismal job. Most of their patients do not get better.

Brain injuries don't tend to get better. They progress (in MS, Parkinson's, Alzheimer's, Huntington's, etc etc). Doctors (and MS Nurses) are supporting a crumbling wall, catching the biggest falling stones, having to let the smaller ones tumble.

When I was first diagnosed, I must have called my MS nurse a zillion times. I would have a symptom, it would bother me, so I'd call. "My foot is in a spasm and it hurts". "Yes, that happens," she'd say. "I'm completely numb on my right side". "Yes, that happens," she said. "My vision is all blurry!" "Yes..." And on and on.

God bless her, she never said, "Would you please stop bothering me? I have real sick people to talk to!" Because she did. The people who were paralyzed, who couldn't swallow food, who had horrible kidney infections after storing urine for weeks, people who had gone blind with optic neuritis. People who were truly suffering, as vs me, who was being BOTHERED.

Symptoms are awful, painful, exhausting, depressing. I hate it when I can't see properly. I grieve when I can't pee or pee when I shouldn't. I live in total fear of fecal incontinence. I miss being able to feel things.

https://www.mstrust.org.uk/research/research-updates/update130313-longer-lasting-sight-problems-ms-how-common-are-they

But hey, I'm also getting older. Maybe my blurring vision is due to cataracts. Maybe those aches and pains are because I've lazily sitting about instead of exercising.

Or maybe they are signs of my MS progressing. Truth is, there isn't a whole lot that can be done about that bit. Yes, medications - the disease modifying ones - and we should all be taking something like that. Vitamin D - yep. Antispasm drugs. Medical Cannabis. etc. But truth be told, other than the disease modifiers and Vitamin D, nothing will stop this train we're on. Yet.

We can adjust the pillows or ask for a warm blanket, but it's really up to us to try to make ourselves better. Rest, exercise, stretch (whatever parts you can). Eat as well as you can. Avoid salt. Enjoy life as much as possible. Rest. Laugh. Like most chronic diseases, MS is up to us to manage. We have to take responsibility for a lot of it.

And leave the neurologists time to see those who are being consumed by galloping MS, who are dealing with people dangling on the knife blade of serious progression. Leave them time to do research, to find a cure for this dratted thing.

It's terrifying to take responsibility for your "itching swelling brain," and I don't mean to discourage anyone from checking to be sure a flare-up isn't something more serious. Lately I've called when I couldn't pee, and when I lost myself for an hour and felt panicked. (also a pee issue - a urinary tract infection). Both times I got an immediate caring response that dealt with the issue. I don't call when I'm in pain, or tired, or can't read well anymore. With perspective, I know that if I stretch, drink more water, rest, move, this will likely pass, and if not, there probably isn't a solution. (yet) And I whine to my MS support group and they whine to me and we understand each other.

Life sucks. MS sucks more. So does diabetes, arthritis, cancer, etc. We aren't the only ones who deal with stuff on a daily basis. Sometimes we just have to bite the bullet and suffer in silence.

What do you think? Let me know in the comments!

Livin' large in a small body

As I near my 60th birthday, I have to admit, I've always been the tiniest bit chicken about things. Travelling, sleeping alone in the dark, being made fun of.

Not that I don't have reasons for all that - I blame the Catholics for my fear of the dark, my small town life for the travelling thing, and being made fun of for being made fun of. At 5' tall on a big hair day, I've been up for my fair amount of abuse. Add smart and nerdy and dressed in what one of my high school friends gently referred to "slightly out of style" clothing, I stood out.

Heck, I've got a scar from playing my clarinet in band. Who gets that?

Anyway, through the mystical bath of being abandoned in my marriage, being moved all over the world, sleeping alone a lot, I've gotten braver. I think. I've lived alone for most of 8 years now, and it's okay. I've moved away from family, and it's okay. I've run for office, and that's okay, too.

In all of these things, I "whistle a happy tune"... and I throw myself in. Pretending not to be afraid does seem to get me past most things.

The MS thing has thrown a bit of a wrench into my plans. See, I can pretend to be brave, only to have my body crap out on me at the moment when I most need it. It is frustrating. I am still at the point of refusing to allow it to be in charge, but I am finding it makes sense to take it into consideration.

So living large is developing smaller parameters. I fall asleep easily, so long solo drives (which I loved) are out. Long solo walks likewise. Legs simply aren't reliable, though I push them as hard as I can. Hanging out late at night in noisy places knocks me out for days. Noise itself is enough to overwhelm my senses. I can't have massages because it overwhelms my body. Too much sensation at once.

But no, I protest! I can't be done yet!!



So next week I'm off to ICELAND for the Iceland Writers Retreat that sounds like a pile of two transatlantic flights wrapped around a filling of all sorts of activities, cerebral and physical. I'll even have to be social, attempt to be witty, intelligent, knowledgeable and yet receptive to learning. The whole thing seems like a huge challenge for cognitively-impaired old me. What if I get lost? It's not a completely inappropriate fear - I get lost all the time.

Last week I had a huge anxiety attack about doing this all on my own, but I've met online a bunch of fellow Canadians going to the same event on the same plane so I feel supported a bit. I'm just hoping against hope that my body works with me. I'm telling it, "one more time into the breach, my friend..."

My son says I keep using my MS as an excuse for taking exotic trips. It's true. MS makes me feel like I'm on a merry-go-round, not knowing where I will end up. I may have a long ride, or I may stop on the next round. No one can tell me.

Despite my fear and pending bankruptcy (kidding), I'm off for this trip, hoping I can grab a few of the golden rings as I do. Northern Lights? Icelandic horses? Volcanoes? The most literate society in Europe? Icelanders, such interesting people, living in the middle of the harsh northern ocean. To say nothing of all of the authors I'll meet. Wow.


Meanwhile, my body mutters. It mumbles. It takes a moment now and again to remind me that all is not as it should be.

Ah well, whistle a happy tune, and off I go!

Blindness revisited, or how MS can spring up and mess with you just when you thought you were coping...

Okay, MS, I've got your number. I know you will make me tired, you'll give me muscle spasms, you'll eat away at my concentration like a deranged rodent. I know some days I'll feel so good people will look at my disabled sticker and mumble and gesture. I'll spring gaily along, overcommitting and overdoing because on good days I am almost manic, trying to crowd in as much as I can.

I know other days kids will offer to help me  as I bend over my rollator. Kids. Of six and seven. And old people will hold open the door for me, offer to carry stuff, fret about me. And I'll spend half the day lying on my couch with the cat kneading me anxiously.

But Cheesus Murphy, as the excellent Kitchener restaurant would say, DON'T TAKE ME F-ing EYES!

It's bad enough about the brain. I spent years and countless thousands educating it and for what? So I can misunderstand simple knitting patterns and never find my glasses? Honestly. If I had that tuition money back I'd spend it travelling the world while I still could, going to Africa and Madagascar and New Zealand and everywhere. Of course, hindsight is 20-20, unlike current sight.

Which brings me to yesterday. I've been having problems seeing for a while now - blurring vision, glasses don't work, etc, etc. I've become used to seeing things with furry edges. I now can no longer read small things without glasses - I'd blame it on age, but it's been a sudden transition, over the past few weeks.

Yesterday, though, I had a recurrence of what sent me to the hospital the first time five years ago - a creeping in of goo from the right side of my head, covering my vision, enclosing me in a swampy impenetrable fog.
Last time, it swept across both eyes, giving me intense claustrophobia. It came, lingered, left. Came back. Sent me to the hospital. Hung around a bit more, left me again.

Last evening, it crept in again, like a migraine aura, oozing in from the upper right corner of my eye, creeping ever so slowly until half my right eye vision was obliterated.

I thought I handled it well. I mentioned it to my companion, quickly, not lingering, in case I was having a stroke and he'd have to spring into action and do something with me. Like a distant foghorn. We continued chatting and working, and I quelled my panic. As with most MS things, there is little that can be done, when it comes right down to it. If I lose my vision, that's it. There's treatment with steroids, which shortens attacks, but really doesn't help with progression. If the bottom drops out of 'er, as they say, it drops out.

It came back, thank heavens and the gods above and all that is good and right in this world.

But it leaves me a little bit more frightened, a little bit more wary, a little bit in dread.
Sometimes I forget I have a progressive disease. I adjust to my current function, think it will always be thus. And then...

And then...

It's fucking terrifying.

Doctor my eyes have seen the years

and the slow parade of fears without crying
now I want to understand....

Today I finally bent and took my eyes to be checked at the eye doc's place - they've been giving me a bit of grief lately, giving me needle sharp pains at times, followed by blurring. Especially my right eye.  I know I've given up on doing close work even with my glasses on, as I can never rely on the darn things to focus when I want them to.

http://www.nlm.nih.gov/medlineplus/ency/imagepages/1143.htm

So I got my visual fields tested and discovered I have a slight and somewhat scattered loss in my right eye.  Eeeeeks.
Can I just mention this possibility of vision loss scares me most of all?

Ah well, perhaps it's just a flare-up. Or maybe I just have dry eyes and it is all just fatigue from the testing.  I go back for a retest next week, and I'm hoping all is better and I just wasn't paying attention. Please. Please?

Doctor my eyes
Tell me what's wrong
Was I unwise
To leave them open for so long...
http"//www.youtube.com/watch?v=pCTYxIsLThA

The creeping terror

Ah yes, well, I do like to be dramatic.
So here I've been, feeling vaguely well for the last while, exercising madly, almost able to walk without occasioning some disturbance in my motor core.  But the evil MS doesn't sleep. It's still there, and as soon as I put pressure on myself, it slithers out around the edges and does little things to me, like making my right toe drop just for the heck of it, or making my balance wonky all of a sudden so if I turn about I risk falling, or stopping my brain from chugging along appropriately. My typing degrades.  My ability to make decisions slips ever squidgewards. I make up silly words....

Marc, the infamous Wheelchair Kamikaze, pointed out the slithery dread in his blog today in talking about why there seems to be such a split between neuros and MS patients regarding CCSVI. The thing is, all the stuff they offer us just delays the inevitable.  Our brains remain twitchy, swollen, and the MS continues to kill off the myelin or astrocytes or whatever they are figuring out now, even when we appear fine. I have a good friend who has pointed out several times that we none of us know our fate, and tis true I may be run over by a bus tomorrow - but the difference is, we do know what our future MIGHT be, and it causes fretfulness. We would prefer a cure, thanks.

Every time I feel my body slipping, I can feel that dread.  I can usually compartmentalize it, promise myself that I will worry about it tomorrow, so needn't do so today, but when I head to bed and notice that, despite the medication I am on that used to work to stop my leg spasms, they have returned - well, it's scary.

Or when I go to an event and see people with MS much further along than I am - it's hard not to put myself in that wheelchair, imagining how I might cope, wondering how they find the strength to do it.

Then I shake myself and tell myself that really this just means I should squeeze joy out of whatever fit days I have left, and find extra joy in wherever I need.  It's true, but it's not always easy. Pollyanna-ishness is tiring.

It makes me want to punch things.

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.

Love, romance, and the eternal doubt of life with MS

It's all very twee, isn't it? The whole vision of love and romance and walking through a landscape filled with hearts and flowers, babbling brooks, sunlight, and sweetly chirping birdies to add music....

Well, I've always had a hard time believing all that - typical first love broke my heart thing. And, as an overweight, very short gal, I've spent quite a bit of my life feeling unloveable. Having MS for years and not knowing it made me feel even more unworthy - tired all the time, cranky when I was too tired to think, numbing and filled with pain in alternates.

Add to that the full MS cover. Now it becomes almost impossible to think that anyone would ever want to be around me for more than a short time, for more than a quick roll in the hay, for more than the good times. Who in this big world would be willing to take on a moody with MS, falling apart lass, who has difficulty with everyday tasks and regularly forgets things on the stove? Who will probably get worse and worse and worse?

I mean, I can be brazen and tough it out, tell myself I am good on my own, be more fiercely independent than ever. I can wear my push up bras and mock men for their attention to silly things such as breasts, I can educate myself and fool myself that I am perhaps alone because I am too smart, I can push away everyone who tries to get through the armour.

I do all of this, deny my need for support, contact, affection, touch, love.

Because I know there are storm clouds beyond the sunny meadow, and I don't want to inflict those on anyone. Not even a dog.

It makes me unwilling to trust in love, to let myself fall into it, to accept it when given. Like the rest of my life, which has become undependable, I figure it's a wobbly thing, given to short-circuiting like my fraying nerves. And who knows? Perhaps I have a lesion on my "accepting love" gyrus or something.

It would take a very patient, persistent, and kind man to lead me down the meadow past the hearts. I'm balky.

I may, may have found just such a man. Fearfully, I take a step into the warmth...

Oh what tangled webs we weave..

When first we start to believe....
Yesterday I felt great, super great,, body happier than it had been in ages. I actually didn't have any pressing complaints about its messages to me, I thought we had come to some sort of agreement. I exercised, but not too strenuously, just enough to get my body moving, and it felt good. I went for a walk.
And then bedtime hit - unspeakable pain. Writhing. I slept (haha) in my bed in all possible directions. No matter where I put my limbs, they were irritated, twitching, aching like toothaches all over my body. My feet spasmed, my legs jumped, my arms moved without my mentioning internally that it might be a good idea. My fingers played forgotten piano sonatas (from Stravinsky - some atonal something).
The only thing I can think is that some of the stretches I did yesterday aggravated a lesion in my spinal cord. I've always had problems with my neck, which is where the lesion is, and stretching my neck is not overly comfortable.
I've had a few nights like this. I lie there, too exhausted to get up, afraid of the pain that will scream through me when I try to stand (cos it does). After the first few agonizing steps, it's okay, but that first step is a doozie.
It is HORRIBLE. And now I'm afraid.

Fear and Trembling

The expression "fear and trembling" originally appears in the Book of Psalms, and recurs in the Yom Kippur prayer "Unetanah Tokef" - which describes man's inconsequential status of man vis-à-vis God, and his fear of the Day of Judgment:
The great shofar is sounded
A still small voice is heard
The angels are dismayed
They are seized by fear and trembling
As they proclaim: Behold the Day of Judgment!
from: http://www.hma.org.il/Museum/Templates/showpage.asp?DBID=1&LNGID=1&TMID=84&FID=524&PID=3063
Well, I don't think anything that grand is going on with me, but today I had a breakdown. I was at the dentist, and it occurred to me that I was never going to be able to afford the expensive caps they want me to get, that I would soon be losing teeth, that all of this was tied to my inability to work, that I still would have to spend hours being drilled by an unsympathetic dentist who lectured me about how I hadn't done anything properly etc., etc., pointing out that, yes, my life is one series of bad judgments and the MS is probably just a payback for them all.

It all hit me then, the thoughts of growing disability, the fears of dependence on someone, the loss of self this whole thing is causing me. Sure, I had pride, but most of that had already been beaten out of me. Sure, I thought I was valuable, but truth be told, none of us are. I thought I was independent, like Simon and Garfunkel's "I am a Rock", but no.

I am afraid. I am so so so afraid. I am afraid of losing everything, of being in a nursing home before I hit 65, of being unable to speak or write or see or drive or walk or sit or feed myself. I am afraid of the pain, which I am already getting to know. I am afraid of being alone in my pain and degradation.

I am grieving, and it's hard. I'm angry, and that's hard, too. It's unfair. There is no MS in our families, ever. Except now. They think MS might be tied to Infectious Mono, which I had, badly, from living in residence. No kissing involved. NONE.

I'm afraid today. Tomorrow will be better. Tomorrow, I'll be back to taking over my new, smaller world.

Fear and trembling

Sometimes the fear of this disease makes me feel trapped, makes me want to run away as fast as I can from everything, everyone. It's scary as hell to think about what very well might be. Although I still look fine on the outside, I am completely numb. I have difficulty with crowded rooms, multiple tasks, focusing on conversations, listening, completing things, walking, seeing, making good decisions, controlling emotions, managing finances. I've stopped playing the piano and the viola because there is never any progress, and my writing is suffering because there are never any ideas.
Emotional stress kills me; physical stress exhausts me. And yet on I go, one foot after another, one situation after another.
I am superficially gregarious, cheerful, and motivated. Internally I want to curl up in a ball and die. I'm such a chicken! The thought of being incontinent, dealing with cramping and spasms and pain and falling and visual problems and all that terrifies me. Especially as I have had significant losses in the past year and they ARE NOT GOING AWAY.
And then I read this article about driving and MS. And I realize I am in fact showing signs of losing abilities in driving - I've noticed for a while that I have troubles driving at night, in traffic, when distracted, to new places. I am ever so subtly avoiding these things but what this means is that my world is pulling in around me tighter. Living in the country makes it better and worse - better cos there are few traffic issues, worse because when it is dark out, it is very very dark out, and I have to drive everywhere. Losing my driving ability here would mean complete isolation and dependency.
So I am panicking - quietly and internally but panicking none the less. And praying I don't make bad decisions because of this panic.