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.

On the perils of accepting charity

Job accepting charityWilliam Blake

I am in a frumious mood. My own fault. I went to a charity MS event today. Not a fundraiser - a "social" event. One of the Anglican churches here has been holding lunches for people with MS for the past 40 years - an astonishing and kind commitment but ever so slightly weird. 

Why? Because they don't speak to any of the attendees and in fact treat us all as if we are mentally feeble. I had one man practically walk with me to the washroom to ensure I could understand the Men and Women signs appropriately. Argh. 

A church pianist sort played hearty Christmas music on the piano to add context but she played too loudly for anyone to speak with each other, especially MSers with weak voices, sort of like you'd do at a senior's luncheon where everyone is senile or very hard of hearing and sits quietly and drools through the concert. She did a good job but had a different songbook than any of us so we always ended the carols in different places. 

They kindly made food suitable for people without teeth and brought around broken up bits of fruitcake that were passed to us in crumbly small amounts. And they poured us 1/2 cups of coffee so we wouldn't run the risk of spilling it or burning ourselves.

Santa came, and with him a man dressed as an elf, who gave a 15 minute long speech, crying all the way through, about how he loved wearing the elf suit for Christmas Daddies and etc and how "all your happy faces" made it worthwhile. The happy faces got rather stiff during his emotional session, which I guess he does whenever he wears "the suit". He does make a good elf, if a somewhat bipolar one.

We'd taken a ride from friends so we were hopelessly trapped there for the entire event.

There WAS a wonderful man with a fantastic voice who ensured everyone sang Christmas Carols, so that was fun. I suspect he is the parishioner who pushes this thing - they said at the beginning that the usual people didn't want to host it so the men's club did. 

And so all the men stood together over in the corner staring at us while the women toiled in the kitchen, as usual with church things...And everybody brought $5 gifts to share. I was hoping for chocolate but instead got a shiny necklace and two hand towels in pink that said "Love always persists". With bunnies and carrots embroidered on them (not by hand).

All in all it made me CRINGE with horror at the thought of being in a senior's home where I would be pushed out to one of these festive events in a wheelchair and forced to endure and smile through all of this SHIT every few days until Christmas. I swear to god I am taking myself out before that happens, or I'll have to check in with a weapon. Or a few.

God, I pity the poor. It occurred to me that this is what usually happens at charity dinners, where all the good folk, hardworking and with their hearts firmly in the right place, cook food and serve it while watching the poor/old/feeble/sick and hoping they are appropriately grateful. Egad. And for the first time I saw the hell that ongoing disability could be - endlessly going to these things for a "day out" until I perish in the attempt to gulp back another shortbread cookie made with rancid butter. I'd rather get a cash gift and spend it on liquor and sin, with no one watching to see if I choked.

I really don't think I have the intestinal fortitude to be a charity case. How DO they do it?

Exhausted from trying to be nice and failing miserably. 

Inspector Dreyfuss

Well, so, here I am in agonies with trigeminal neuralgia, going around grabbing at my head like John Cleese in the Fawlty Towers episode about the Germans and unable to think without shafts of pain shooting through my head, so I go to see my excellent doctor and she prescribes Gabapentin for me.



Cool. It stops the agonizing pain.


But now my left eye is twitching like Inspector Dreyfuss in the Pink Panther movies and I feel vaguely piratical as my eye closes down after twitching. And today, I developed nystagmus in my right eye, so my left eyelid twitches and my right eyeball twitches.

I'm beginning to look vaguely possessed.

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'