Being a bad patient

I've never been what anyone would call "cooperative". I'm far too mulish and convinced of my own intelligence to go along with anything without some resistance.

But around the MS thing, I do try and be a good patient.

Because I worked in primary care, and I know well how bad patients get treated. Non-compliant patients get treated like scum. No one asks if the patient had good reasons for not taking the prescribed medication - or if anyone ever asked him. No one likes the patient who misses appointments (in primary care in Ontario, three such misses without good explanation meant you got dropped off the doctor's list. But who determines if the explanation is good?)

Patients who argue with their doctors get branded with the "personality disorder" moniker and then get pushed to the bottom of the list.

So, as a nurse, I've always tried to be endlessly polite and then do my hollering AFTER I got off the phone. I take my medications (mostly) like a good girl, and try to be responsible about self-care.

Today I nearly lost it, though.

I was booked for a pelvic ultrasound for this morning at 9:50. They told me to show up 15 minutes early, but I'm wise and didn't. I drank water on the way so I wouldn't be frantic with the need to pee. I'm not pregnant but I suspect looming fibroids and my MS has tinkered with my bladder sensation and control.

I walked through the maze of the local children's hospital, where I sat and waited for my number to be called. It was. At that point I was able to register. I went back and sat down. And waited.

I was surrounded by pregnant women, alternately breathing and crossing their legs. If you've never been pregnant, you can't possibly appreciate what it's like to wait for a pelvic ultrasound. You are nervous, want to see the baby, and the same baby is tapdancing on your filled bladder.

With my middle child, I was so full by the time they took me, they told me I had placenta previa - when really I had too much pee in my bladder.

So I was sending soothing and understanding glances at the pregnant woman while gradually getting more and more uncomfortable myself, as the HOURS passed.

Eventually  - a full hour + after my appointment and with three more people to go before I could be seen - I couldn't bear it any longer. I went to the desk and politely told the lass that I had to go (in both senses of the word). She whispered she'd try to rebook me. Much was made of the fact that I'd already registered - perhaps that gets fed back to some assessment?

Anyway, my rebooked appointment is at the end of APRIL. In four months. Surely to God they had an opening before then. Not that I'm in any hurry to recreate this experience.

You can't tell me that wasn't punishment for me leaving.

And now I'm mad.

Why all the fury about CCSVI?

Whew. Apparently there will be an announcement about CCSVI made by the NL Health Minister at noon today.

Instantly the chatter lines light up. The CCSVI advocates are hollering again. They yell, they tirade, they do personal attacks on neurologists, the MS Society, the people who work at the MS Society, drug representatives, cardiologists, radiologists, that guy that's walking by the window, anyone who doesn't eat pasta, that annoying mosquito.

It's like as soon as you mention those four initials, you've poured alcohol on a fire.
From my way of thinking, I don't find such ranting persuasive. The pro-CCSVI people are sounding more and more like a cult of late.

We've seen this before, folks. Remember laetrile?

I don't know what will transpire regarding CCSVI and MS. I hate the medications we have to take that we aren't sure will do anything and that cost us a lot in terms of money and side effects (potential and present). I hate the fact that I have to take medications at all. I particularly hate that Copaxone has been fined for overcharging and they, TEVA, just wandered out of the discussion, grinning and patting their fat wallets. While gesturing with their other middle finger.

(But then, I have high cholesterol, too, and pay into Crestor's vast resources while eating potato chips. Thus supporting TWO evil industries. I feel kind of silly grousing about big pharma when I lack the self control to avoid them.)

But interventional radiologists are making money on this, too. They have better press at present, true, and maybe that's because a great many neurologists are, unfortunately, just not nice. Or they are frustrated dealing with a chronic disease for which they have no real hope or answer, despite years of research on it. Brains are, apparently, complicated. Immune systems even more so. Who designed this system, anyway?

In any case, the jury is still out. We're devoting resources to investigating this CCSVI thing, that, unfortunately, doesn't seem to be coming back with positive answers for many.

And any who raise a cautionary hand are being demonized.

This is a confusing disease. It's awful and hopeless and expensive and leads many to suicide. How about stepping back and stopping the attacks, eh, CCSVIers? I, for one, would be more tempted to listen. Right now I wish the whole thing would go away.

Malingering and MS

Okay, you've all heard it.  About how MSers fake their symptoms so they can be accepted into trials.  About how neurologists have to judge the story and see if they believe it before treating. About how MSers demand more more more all the time and insist on treatment even when their symptoms don't warrant it.
No?
Well I have heard this from three sources in the past two weeks (two live, one on Memorex), and I don't know quite how to react.
Burning down my neuro's office seems extreme.
Yelling in the privacy of my own home seems ineffectual.
Slapping the person who implied I was malingering is chargable.
So I'm settling for the middle road and writing here.

Okay, I'm mad.
Hmm.

So, you get told you have a chronic incurable debilitating disease. You are told you have to take expensive medications for the rest of your life or risk crippling disability. You are told you have lesions and holes in your brain.

Some of us wallow in self-pity.  I did that, for about a year. I figure that's pretty normal. But once I bonded on the idea of a walk in tub, I was fine, really. For the most part, though I can't help grieving some of my losses.
("of all the things I've lost, I miss my mind the most...")

It's hard to be cheerful all the time when you have muscle spasms and numbness and forget where anything is and can no longer do simple math without thinking really hard and have to leave work because few employers would put up with a 2 hour nap every afternoon. But wotthehell, Archie, toujours gai, as Mehitabel the cat would say.

So, if you're me, you give your head a shake and start exercising. You exercise every day.  You ignore the fact that this means the rest of the day is a writeoff because you know that if you don't exercise, your balance gets worse, your muscles atrophy, you feel more pain, you get fat(ter). Exercising means that your muscles are capable of walking the dog.

Exercising means that you still can walk, even if some days it takes more concentration than it really should and your feet cramp up afterwards and you notice that that old left leg just isn't swinging forward the way it should.  But you plunge on and you do your best because you are fighting the disability, damn it, with all the energy you've got.
BUT you're still numb, you can't see properly, you can kiss sexuality goodbye, you still walk like a drunk when tired and a certain amount of your zest for living vanishes along with your energy.

And then you interact with your doctor.
And he treats you like those things, those smallish things that exist and ruin your life, those smallish things that shine most bright because of all your hard work stretching and moving and exercising even when you are beyond tired and your positive thinking and sense of humour about not being able to feel your lips or having them tango dance every time you go to the dentist - those things that still bother you - he treats them as if they are nothing, as if you should be grateful, as if you are wasting his time.

And in a way, you are.  There's nothing that can be done for you in any case. Well, except more drugs. Which cost more money. And have side effects and dubious efficacy.

And then there's the support you need to maintain your status as disabled, that status that means you get an income even though you are too tired to work for one, even though, as an employee, you'd be pretty damn unreliable. And that he holds over your head like a sword of Damocles, in his might, swinging it to and fro, to and fro.

It's no wonder people with MS are telling the tales of their worst days, not their best. Minimize your symptoms at your peril, lest your funding be removed. Minimize your pain, or forget those nights when you couldn't sleep because of spasms, and you get scorn.

It's no wonder people hop on the comet trails of every possible treatment that doesn't involve their neurologist, even if the hope is as ephemeral as those trails, just to avoid that scorn, that feeling of being examined and found wanting as a person and a patient. I'm sure half of the benefits found through CCSVI treatment come from someone listening to the patient, and showing some caring.

I've lived with ongoing pain most of my life.  It's from a variety of causes, probably not all MS, but I've lived with it and dealt with it and moved on. I resent like hell being told I malinger, when I ignored the symptoms of MS until I went blind one day (thank heavens, for a short time only) so that I wouldn't bother the medical establishment. I ignored the symptoms of a kidney stone and coped on my own with it so I wouldn't have to go to emergency. If I am saying now that I CAN'T DO IT, then by god, I CAN'T DO IT.

I am reminded of my favourite patient when I was teaching nurses.  They were going to give her a bath and they had placed her in a bath chair to raise her up and into a huge tub. She was stark naked, up about five feet in the air, and she was hollering, "Come here!  Come here so I can kick you!"

I feel as powerless as she was, and just about as mad.

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

ANI

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.

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.