Friday, November 16, 2007

Not the best day, and I keep my catheter for Xmas!

Well any day which starts waking with the feeling that someone left your body on an expressway overnight and ends with about 20 minutes of prolonged crying isn’t going to be chalked up as “the good one.” Just a note here to those who think women look good crying, that’s really only for the first minute or two, after 20 minutes it is just fluids coming out of every facial orifice. It is not only a bit nasty and slippery looking but it becomes really hard to breathe.

Last night, I actually had to be helped onto the toilet, and off again, which is a new low for me. I did sort of make it on the toilet, just not actually facing the right direction, and I had a severe list toward the east. There is really nothing to replicate having an adult have to hoist you ON a toilet and wait for you to go.

I’m sure this odd regression to early childhood would be less ludicrous if I wasn’t 6’3” and 195lbs. Trust me, no one is “carrying me” to place my bottom gently on the toilet. I have this horrid vision of Linda having to throw a party for the people on our apartment building’s floor in order to have enough people around to hoist me for a pee. There is, of course, the catheter option. But I was really hoping to save that for Christmas.....2008.

Anyway, I had the unfortunate experience today of being told (emphatically!) that the Province of British Columbia would much rather have me with a chronic condition for life than investigate a treatment which might reverse my condition because it costs: $14,000. Actually it was put more bluntly, “Do you think they are going to order that treatment for you, because they aren’t, because it costs $14,000!” Well, I always knew that my value as a human being went straight into the crapper once I was disabled but....sheesh.

Because I am who I am, I told her that if we wanted to base my treatment on purely economic decisions, that I recommended she harvest my organs as soon as possible before they become non-viable. Then, far, far away from her I cried. Perhaps it wouldn’t sting QUITE so much if the same person hadn’t ordered a repeat of my full spinal MRI not because there wasn’t something there but rather because she had told me there wouldn’t be, and there was. So, instead of telling me what the radiologist found in “multiple sections of the MRI” she is ordering the test to be done again, in the assumption that it was all an error (She literally said, “The radiologist says there is something in several sections but I don’t accept that….” I asked if she had seen the MRI; no. Not even the sections they found something in? No. She said she could overrule the findings of the radiologist but instead she ordering the test done again.) So the MRI will be sometime in early to mid 2008. My parents cannot quite understand this: “But it is a different MRI she is doing?”


“But this one is a closer MRI?”


“But it is from a different angle?”


“Why are they doing it then?”

“Uh....she doesn’t like to admit she’s wrong?”

It was the last in a long week of at least one prolonged medical test or appointment each day. And I am burnt out. Rake out the fireplace, I’m all of cinders.

Tomorrow I will go out and find some joy or at least come up with something that fakes it with close enough proximity so that you don’t have to hear about “bad days” for a while. The truth is, I don’t want to depress anyone else. Just because I feel sucky doesn’t mean I want lots of company (only room for one prima donna at THIS pity party!). So have fun, go drinking, have sex, do rude things with various fruits and vegetables. And remember, mild sobbing for two minutes max, then try to transfer into some sort of cute hiccup thing. Unless you are alone, and then let her rip!


Sara said...


Does she have an overlord to whom you can report this abuse? Because I'm sorry; this all sounds like abuse.

Wow, your experiences are so different from what I usually hear about Canadian medicine. Usually I hear about what it's like to be a cancer patient in Canada, and usually I hear brilliant things about excellent care and no worries about money.

I wonder how much of it is difference of diagnosis and how much of it is the "luck" of your location. The unnecessary testing crap, this is for people who have nothing but time, as if there were anyone like that, but certainly not for people who are supposedly terminal. Really, this is how she wants you to spend your precious, irreplaceable time and flagging strength? Really?

It is very hard for me not to wish terrible, terrible things upon this woman.

Eh, so much for laughs. Instead today you get suffocating virtual hugs and a big impotent bagful of righteous indignation.

Hang in there, kiddo.

Marla Fauchier Baltes said...

How frustrating. So, overall do you think Canadian health care is good? Have you seen that movie Sicko? I have not seen it yet.

I hope the MRI is not a painful one. That makes my blood boil they are making you do it over and knowing something was seen and them not telling you is just terrible.

I hope you do have some fun today!

Lisa Harney said...

That's just wrong - the point of diagnosis is not to discard all data that disagrees with your pet theory, but to understand your condition so as to provide more useful treatment.

And $14,000 is too much to spend? Too much? It costs many times more than that to treat cancer, heart attacks... the cost of medical treatment can hit hundreds of thousands of dollars, and am I mistaken in thinking that Canada covers these?

Seriously, $14,000 is spare change in comparison. They should cover this without hesitation instead of wasting months in the probably vain hopes of a different MRI result. If there's a chance of slowing or curing the MSA, that $14,000 is cheaper than treating the complications as the condition progresses.

I'm so sorry that you're dealing with someone who thinks medicine about playing god with people's lives.

Elizabeth McClung said...

Sara: Well, at one point she said that "I am probably the most flexible neurologist in town to work with" (meaning, I haven't left the room and am still listening to you) - I said since there are only 11 left (and 4 with hospital privilages) that she may be right but it is not a hard claim to make. Particularly as my world jaunting GP had told me the day before he had been told to send all patients to Vancouver as "There are no real specialists in Victoria". The truth is compared to the first time I met her, when she labelled me as suffering from sexual abuse conversion disorder (it is your head making the symptoms up for you), her admitting I had an autonomic failure disorder, and that I likely had a larger chronic condition which tied all these things together was a step for her - now she is ordering the tests she might have ordered 6 months ago at the first meeting to "prove" that I have heat intolerance, for instance, to "prove" that I have nerve loss. She said very soon into the first/only meeting six months ago that "you will live 30 years". When I left yesterday, I said: "My heart holters each show a 9% increase in erratic heart activity and decay, my heat intolerance and muscle weakness have all continued to degenerate at a measurable level; you said that I would live 30 year; now, six months later ther are times I cannot lift up my own food, I cannot sleep without sleeping literally ON ICE wrapped in towels, so explain to me HOW I am going to live for 30 years? How?" She just stared down at me and then after a few moments Linda wheeled me out.

Elizabeth McClung said...

Marla: the cancer treatment is done in a holistic way where the specialists all talk to each other and that treatment is very good as well as easily diagnosed chronic disorders or emergency care. However diagnosis is ludicrious because each little part of each province pays for care so while "Canada" might have socialized medicine, my area, covered by VIHA was found by leaked emails to have been blocking MRI's to save money. And because of this there are no "centers" like there are in the US where specialization occurs except a few univeristy hospitals. So will VIHA pay for a treatment for me; no, and quite honestly VIHA would like to reduce my home care as well; because need is often secondary to "making the budget" and I am a VERY expensive sudden addition to this small region budget. While in the US, I might be sent to the Mayo clinic, here it is perfered (demanded) that I see what few specialists are available in this area (Regardless of whether they have ever seen someone with that particular condition or not), and wait a LONG time to do it and wait a LONG time for each test because it is good for the budget. The fact that it will take 1 year and 3-4 months to get back and MRI result that in the US would take at most two weeks, indicates some major problems in dealing and diagnosing with chronic and likely terminal disorders and diseases in Canada.

Elizabeth McClung said...

Lisa: "the point of diagnosis is not to discard all data that disagrees with your pet theory," - are you sure you have been to see specialists? The only reason this woman was talking to me at all is she simply HATED to have anyone not acknowledge her as correct in everything; she would walk to the door several times and then come back because she HAD to prove that while, yes, labelling me with conversion disorder wasn't exactly correct in THIS instance wasn't it in my BEST interest if I DID have a disorder which could have been cured in six months (so now, six months later, she isn't admitting she made a wrong diagnosis, she is saying she was making the diagnosis that would have been best FOR me, even though that was one which turned out to be incorrect).

As for the money, I completely agree, as Linda says, it is SHORT TERM thinking, but then, that is a lot of what governments do. The truth is, even is MSA is confirm I could live 10 years (I can't quite see how that is possible but according to stats it is); so exploring right away whether I have the criteria to have this treatment you would think would be top priority. The treatment is for people with AAN, which is sort of identical to MSA just autoimmune based. And if I HAVE AAN and I get IVIG treatment in the early stages, the whole autoimmune aspect will be nuked and my body will rebuild some/part/maybe most of what was destroyed (as has been noted in cases in the US) - if the autoimmune aspect of AAN has continued for too long, then the treatment is worthless - too much is destroyed already.

Well, I guess now I am going to try and extract $14,000 from them in every service imaginable, I will have people lined up to read me the bible and bring me meals - I am a vengeful crip.

Lisa Harney said...

Yes, I have seen an endocrinologist. I also read your post almost immediately after my niece had seen an endocrinologist about her goiter - she has no energy to do much at all, sleeps all the time, and the endo said that it was a "small goiter" and "doesn't need treatment." Stories like this make me angry, because of what should be happening, what the point of medical care is, as opposed to what's most convenient at the time.

Early diagnosis/treatment is like gambling in your favor, but VIHA - like most American HMOs - sounds like it's more concerned with verifying that people are healthy and thus don't need treatment.

It's disappointing that there isn't any patient/client advocacy available to make care more accessible, but maybe I'm too utopian.

Elizabeth McClung said...

Lisa: I complete agree, and your neice may find this piece of interest if she has hypothryoidism - in which they are "waiting for the thyroid to die":

It shows that if you treat the thyroid with small amounts, you can prolong the death of the thyroid AND have a better quality of life.

I too wish there was some form of advocacy but apparently saying, "Don't I deserve better as a human being?" isn't a very Canadian thing to do.

Lisa Harney said...

It shouldn't even be a question. Just "I deserve better." Humanness shouldn't need assertion, it should be assumed.

Feh. :(

Thank you for the link about hypothyroidism.

em said...

Elizabeth. I'm glad that you are writing your truth, keep it up.

I love it that you threw that line about harvesting your organs now at that bitch. Hopefully you hit something in her.

Is there no way to get services there? For example finding some way to shame them into it? News coverage? It's really horrible hearing the crap you are going through over a treatment that is cheap by most standards. My friend who had cancer was told by her insurance agency that she was using up all the funds and that other clients would be deprived services because of her selfishness. It makes me want to unleash vengeance.

belledame222 said...

christ, E.

listen, is there any way to--i don't know, my immediate first thought is "barnraising/fundraiser," you know if people can send enough money to put bloody Aravosis in orchids for any rate i'd be up for making inquiries among people who've organized such things before.

Elizabeth McClung said...

Lisa: I serious wonder about that, it is something I asked Wheelie Catholic; as in, why should anyone help me at all since I have no way to repay them? Nor am I likely going to be able to? I could justify getting student loans becuase I KNEW that the country would be better by having more people with higher education (and because they bleed it back out of you through any and all means possible), I still don't know how I benifit society in my current condition?

Em: Yes, well, I thought since she was getting all "pragmatic", that I can be even harsher about pragmatic (hey, we could go together to the hospital and harvest all her patients organs!).

As for news, errrr, I already went to the papers about not getting a GP and they are still "researching" the article, only non of the doctors who rejected me will go on record so guess whose is the only name which will show up in the paper......yeah, that's going to make me even more popular in the medical community. Also, if you have EVER heard of specialist or Doctor shamed into doing ANYTHING, please let me know.

Belledame: I am sorry to say I actually had to google Aravosis, and then I was like; HIM, the one who wrote THAT article about how great it is if we made sure Chinese didn't get the vote....oh, I'm sorry, I mean rights for T people (Sorry, since in Canada the Chinese got the vote several decades after women I tend to forget who is making the full-of-shit, "it's better for everyone if these people don't get rights" arguement this particular day/week/year/decade) - that guys gets sent money. Sheesh, and this is why I try to NEVER post anymore about US politics (also there are so many hate emails my fagile little ego can handle). Unfortunately, I serious doubt if even Aravosis and those who send him money are going to get anquished about another minority; terminal/disabled lesbians who talk way too much about vibrators.

belledame222 said...

yeah, i didn't mean going after his base, you know; but i do think, like, some of the larger feminist & midrange LGBT blogs might have an interest, i've been party to some of their barnraises. see how it goes, keep us posted, obviously. i saw your reply to the other poster suggesting paypal on the other site. I hope the U.S. thing works out. damn, and here i was sure there was -nothing- better about our health care system. um, yay us? ech.

as per aravosis: yeah, he's a fucknut. otoh he makes for excellent mockage fodder. friday orca blogging!