Monday, January 14, 2008

Beth having a bad day: medically and mentally

My right hand/wrist/lower arm is no longer weight bearing or, well functional. This means I can’t use my wheelchair. That sucks! I wish I had a really glorious story that went with how I got this accident like being hit by an out of control truck. Truth is....I was hit by an out of control vespa scooter. No. That’s a lie, it wasn’t even that cool.

On Sunday, Linda had to run an errand, so I snuck up the Y – where I now have a membership because I legally declared myself as “a pet” (I am not joking, that’s what I told the front desk and then showed them my Canadian Tax return from last year which proved it). And if you have absolutely no income whatsoever and can prove that you live on air, then the YWCA/YMCA will let you be a member for….$10 a month. I didn’t quite follow the logic of it but maybe you can. Anyway, it means I can do drop in sports for FREE and Sunday had badminton. I had never played badminton but I had played tennis and I thought the concept was pretty much the same (Rule 1 and 2: Hit an object with a racket; do not hit the person on your team with the racket). The person at the front desk and the organizer thought that “it just wouldn’t work” with me in a wheelchair. But we started playing and it turned out that I was quite good with it (repeatedly asked, "Are you sure this is your first time?" and "Come on other days, you will be better than some players."). Except the people I was playing with were: 1) The YMCA badminton director, 2) Some European guy in his 40’s who played badminton “at least” four days a week and 3) some guy in his 20’s who spend his time NOT playing badminton watching “classic badminton matches,” Today he waxing on about this great 1985 match he had watched over the weekend (it was like listening to a Trekkie who had gone sporty).

The fact is that after the first 30 minutes of warm up I asked my team mate (YMCA guy) why the other team wasn’t “running around” and how do we make them do that. So they told me how to hold my racket and where to hit it and I did. And I would roll the net and try some slams. So, it was pretty obvious that while I wasn’t going to win, I wanted to win. Which is when they started dropping the birdy (sorry, if I start talking about SHUTTLECOCK this and SHUTTLECOCK that, I will end up on even weirder online sites) short and over my head. I was getting tired and sometimes instead of rolling back I would try and stretch and do a hard twisting hit to the back corner. It was during one of these that I sprained my wrist.

That wasn’t the problem. The problem is that here was super badminton euro guy on the other side of the net and yes, it was my first time playing but, he was GOING DOWN! (No, I don’t have an “A” type personality, why do you ask?”) so I might have, um, after rotating my wrist to feel where it hurts used a trick I picked up from olympic gymnasts: they jump up and down before routines to deaden the nerves in the ankles that are causing them pain. So I might have repeatedly slammed the injured part of my wrist against a hard object until “Hey, it doesn’t hurt anymore!” (The sad thing is that I thought this actually meant it was BETTER) And then I continued to play for another hour. So, yeah, when afternoon came and I had to take pain pills, wrap and then immobilize my wrist I realized that impressing euro guy might have had a higher cost than anticipated (I lost my singles match 15-6 but they said they weren't taking it easy on me).

Sigh. So still wrapped, no weight bearing, no using, no movement. I was still planning on going to boxing tonight but was unable to due to OTHER problems. Two problems: 1) I slept over 12 hours today including a four hour afternoon nap from 4:30 to 8:30 p.m. – past the time of boxing (late nap because I had to wait for Red Cross guys to repair my bed so I could sleep in it) and 2) Lost the will to live. See at 10:00 a.m. I had ONE appointment this week but by 1:00 p.m. today I had at least one appointment every day this week, and hordes more paperwork that I NEED to do. All much like the paperwork and meetings I have been going to in order to try and improve my life for the last 11 weeks which has yet to produce a single positive result. And I have been getting through the last while on pep and will power. Without the desire to force myself into whatever it is I must do next, I just lie there. Because it hurts whether you make some administrator their hourly wage as you fill out another hour of paperwork (as I am to do tomorrow at 11:00), or just stare into space. I not only have no control over my life, but for all the action I am forced to take, so far, after MONTHS, none of it has produced a single positive effect.

What I want to do is email all of you who have said you would stand in as family, only, to get up, to answer the comments on the blog and eat took from 8:30 until 11:00 pm. So that will have to wait a day or two, I’m sorry. I already have at least two appointment tomorrow in the time between getting up and dressed and my nap at 3:00.

My GP office yelled at me today because I told them I had a heart infarction Friday morn last week. They wanted me to go to the hospital. “Okay next time.” I said. “No, now!” they said. I was just telling them so we could book an echocardiogram and find out if there was permanent damage. I am pretty sure about the heart thing as my heart rate was 192 bpm with over 25% erratics, then 1 hour acute chest pain (that was coming through 2 tramadol – the maximum dose AND codine). That was followed by several minutes in which 40 seconds felt 10 times worse pain than I have ever felt (it felt like a star was exploding inside my chest), and what I could see of my left arm was a dark purple with the left hand actually withered. It looked like advanced gangrene. I had to be held as I lost all trunk and limb control and couldn’t breathe (which with the screaming I wanted to do was probably a good thing). Then my worker put me to bed and watched because it felt like a huge anvil was on my chest with pain radiating down both arms. I had asked her not to call 911.

My GP office wanted I should go in NOW, on Monday to the hospital find out what caused it. I know what caused it: my physical exertion to force a drop in the diastolic was too much for my MSA/AAN to control and I paid the price: heart infarction today or stroke in a week – that was the choice. What could a hospital see today or do then? There might be drugs which could intervene and lower my BP, but no specialist is interested in moving me up the list. There might be ways a pacemaker could take over heart function but I haven’t seen my “heart specialist” in seven months and he isn’t talking to my GP.

I know a heart attack could kill me; I know a seizure or lack of oxygen could cause permanent damage, a series of micro strokes could occur due to high diastolic; permanent organ damage due to high systolic. I know. I don’t run to them because it makes me tired and because they simply don’t know what to do. Will it kill me today is all I ask. And even if it does, how much will that matter, after your fourth or fifth hour of pain which has you hallucinating.

“Fight on!” is what people say now, right? Hell, I’m in this because I am such a damn good fighter that my own immune system seems not to know when to stop fighting, even when the only thing left to attack is ME.

Did I think I would start having heart infarctions so early? No. But is the number two death for people with MSA/AAN. What should I do? Go on for another month or two, filling out the paperwork while I still can, or sneaking away to do stupid things that at least I have a choice over and try to impress euro badminton players? The changes and the pain, are very fast this week, extreme in nausea, extreme in fatigue, muscle weakness and pain. These days the questions I ask are, do I take a dangerous level of Tramadol and risk liver damage to sleep for one night or find out what happens if I don’t? Will it kill me today? That’s all that matters now. That and getting strong enough to sneak away again. I don’t want a mockery of living, going through the motions as much as I can, I want those hours when I genuinely forget that I am different and two hours when I don’t think about death; or living a year ventilated in a home, or bed sores and open pus sores with nerve endings on a body which still has nerve feeling.

Well, how many here have seen their left arm/hand turn a disturbing purple and shrivel? I have, I have! It was very biblical. You can’t say I’m not getting some unique experiences.

Happier emails tomorrow I hope.

12 comments:

Elizabeth said...

As your flaky, amiable cousin, it's my job to encourage you to continue to do crazy things...and also to smoke cigarettes with you behind the bowling alley.

I do hope you've picked up a surrogate mother in all of this to give you *good* advice and care though.

[worries . . . while looking for cigarettes and that bottle of stolen liquor]

hugs, E

Katrin said...

I think you would be much more qualified to have been given the comment I got last week from my PCP:

"You're a tougher bird than you feel"

To which I replied

"If I weren't, I'd have been dead years ago."

(I don't think he was prepared for that response, said in my "I'm exhausted and hurt and really don't care how 'tough' you think I am" tone, and I got an "I guess" after a few seconds of silence)

Screw em all, and go have a good time. I'd take the badmiton over filling out stupid forms that get you no where any day of the week! Like you said, both are going to cause pain, might as well do the one you enjoy.

saraarts said...

I have never seen any of my limbs shrivel and turn purple, though I have seen my leg spontaneously begin spurting blood like a sprinkler head through a blackened ulcerated tumor while the music from that scene in Psycho echoed in my mind. I think yours was worse, because mine wasn't accompanied by heart stuff or any additional pain, just feelings of nausea and faintness and the kind of paralysis that comes from abject horror, not neurological dysfunction.

I totally know where you're coming from with the no-need-to-go-to-the-hospital thing. I really do. I have an epileptic friend who had a seizure on a bus while I was sitting next to her, but I wouldn't let them take her to the ER because she had told me that if this ever happened, under no circumstances did she want to go to the ER. After 30+ years of experience with this, she knew what would happen. She would "wake up" sick and disoriented in a place where she didn't want to be and have to spend whole hours of her life educating residents and wasting her time when there was really nothing they could do for her that her husband couldn't do for her or that she couldn't do for herself at home. I respect other people's choices based on their own experiences, so I saw her home, and my true love and I hung out with her until she was lucid, her husband was on the way home, and she told us she was ready for us to leave. It was so not a big deal, but if she'd been rushed to the ER, that would have eaten two days of her life and forced her to miss work and would have implied just all kinds of extraneous torture.

And also, I have similar feelings. Like last week when I was sick, my true love, certain it was cancer (he is always certain it is cancer, and my position is, "And what if it is?") wanted me to go to the doctor or the hospital. His "logic" for going to the hospital? "What if there's something they could catch now and save your life, but if you wait too long it will be too late?"

Oh, honey, that ship has sailed. I've had metastatic disease for decades.

So then he counters, moving away from the cancer idea, "Well, what if it's something they can fix with just a single pill?"

And my response is that that would be great, but that this is an insane, illogical expectation based on my experience. What, I ask him, in my experience would ever support such a hypothesis?

And after that he shut up. Sort of.

(You can see how your description of the boyfriend in Translucent might really resonate with me.)

Thing is, me going to the doctor or the hospital means hours and days of waiting and testing, and these tests, they are not misery-free. Ever had a PET scan? Or even an MRI with contrast? Yay! I want to go be poked in the arm 5,000 times while they try to find a vein, and then pumped full of weird chemicals, and then told to hold very very still while I lie in a cold room bound to a board being scanned! For hours! Yeah! Just so I can find out my disease has/has not progressed! Or yeah! I want to sit around in a hospital johnny while, in between bouts of waiting in uncomfortable positions on uncomfortable furniture for hours, I keep telling different people the same information over and over and over again while I feel like crap and throw up on them, kind of in public, when I could be home with my bucket and my flannel sheets, a cup of tea, and a good book. Uh...?

So, yeah. I get it. From my own less immediately dire perspective, I totally get it.

You have my sympathies.

alphabitch said...

"it was like listening to a Trekkie who had gone sporty"

That's the funniest thing I've read so far today.

I suppose if I'm to be taken seriously as any kind of surrogate mother I'm going to have to ask you girls to hand over those cigarettes and that -- hey! that's my bourbon you stole, little missy! Gimme that!

Gaina said...

(((HUG))). Having just come out of week of 'ick' I know how a bad day physically always does horrible things to your mind. We just have to try look forward to the good days :).

I'm sure god would go home embarassed if he saw your Biblical Purple Arm, sure as hell beats a little old bush on fire! Haha.

elizabeth said...

I don't know... smoking behind the bowling alley works for me... better than hiding behind the archery range at summer camp. Yeah. I wasn't the brightest bulb.

Here's hoping to a better tomorrow.

Veralidaine said...

Hee hee... It was probably my suggestion as the crazy hermitlike but cool headed in a crisis cousin that Elizabeth the flaky cousin steal your mom's booze...

I totally see where you are coming from on the hospital thing. I've spent a long time coming to terms with the fact that my Godmother might be alive today if she'd gone to the hospital when she started experiencing unexplained lapses in her memory- but she was facing so many health problems already, I think she knew it was serious and laughed it off because she was fine with the massive heart attack she had in her sleep a week later.

Sorry to if that was depressing. Back to hermitage!

glassroses said...

I truly understand your wish not to go to additional appointments and deal with the paperwork. That's really a drag and it's always the same information, except it gets longer and there's not enough room on the form (my medical file at the doctor's office is now several inches thick, and I've not used him that long).

As a maternal person (maybe younger than you, but a parent), I suggest you may want to consider the ER since there are medicines that they can give you immediately to minimize damage. The more heart muscle gets damaged, the more difficult things get (though they're difficult already). However, I do respect and understand your choices and recognize that sometimes we have to break the "rules" or what we "should" do to feel more alive and ourselves, to do what we want.

Lene Andersen said...

A pet?? Am I the only one with a totally filthy mind here?

I will admit this here (but nowhere else and no, I have no idea how this newfangled internet thingy works - this is all private, innit?). When I read about your arm, I had a brief thought about whether you took a picture. See? This is what happens when you encourage the looney cousin in Toronto. It's all your fault! And since Alphabitch took her bourbon back, I'll bring a little something different to the back of the bowling alley.

I hope the next 24 hours will see you free of any new/disturbing symptoms.

Elizabeth McClung said...

E: yipee! I haven't had a "bad influence" in my life (unless you agree with my parents and that youths who ate white bread and drank sugar added drinks would 'arrive at that end which they have already begun' (????)) Unfortunely (true story), the only bowling alley in town was gutted for a superstore...which was then determined to be too expensive to build - so now, empty gutted bowling alley. We need a new hangout!

Katrin: I like the honesty you give your PCP (when tired all the shiney politeness wears off me), I went to the 11:00 today and filled out 10 pages of paperwork with...wait for it....14 pages to be filled out and brought back by friday. I was laughing so hard, I almost cried, they though I was having 'an attack'.

Saraarts: You always have the best (and most gruesome stories) - I had a shooting stream of blood come out of me knee after sugery when I slipped, then used my leg operated on to catch all my body weight, the suture tore and a jet squirted out (like at the water fountain) and I screamed...for a long time. Yours was way more visual though, and you got sound effects, why is it I always have to make my own?

See, I confess that I was saying to alphabitch about your pain and vomiting last week that (thought I have heard it myself over a hundred times) - my God, there must be a PILL for her. See, notice I didn't say it to you becasue I had no desire to be bonked over the head. Today I was told that Ginsing, specifically Korean Ginsing could cure me. Err...right.

Yes, the whole, I feel like crap and how is being miles away, my clothes taken away, poked, prodded and watched by a class of student doctors going to make me feel better - here I can (in your case) vomit and then have your feet rubbed or whatever you get true love to do to make him feel useful. I mean, I had the infarction WHILE I was trying to hold on to a toothbrush to brush my teeth - I was on my way TO bed - so go to hospital....I go tomorrow...If I'm still alive, I'm too tired to go now (you know that medico system exhuastion has set in if this is how you think). It is just, I have been to the hospital ER a LOT of times and no one has ever done anything good yet...and I'm a sort of this glass is half empty and likely to shatter and cover me with cuts kind of person.

Alphabitch: It would be SO great if I could steal your liquor, I would consider it a privilage (you might not, but I would!) - yeah, when you see someone under 30 waxing on about a badminton match from 22 years ago.....?

Gaina: Thanks for the hug, I am sure purple withery arms are somewhere in revelations - that is the "Catch all" book for bad and ick things, this purple withery arm wasn't given to me by a woman riding on a beast with 10 horns (Why has no one done a Fruedian analysis of the Bible?)

Elizabeth: That archery stuff made me laugh, I don't know if I can hang with you, you sound like the person who does wild stuff and the person standing NEXT to them gets wacked in the head.

Veralidaine: Okay, well, the will to live thing is sort of back, or not, but that doesn't mean I am not going to keep this show going as long as possible - it was just too darn inconvienant to go to the ER for what I was almost certain was something they couldn't "fix".

Glassroses: I understand but that is why I called my GP and told him so he could get the tests, I mean, it was a thing that happened over a couple hours and I think the worst part for less than a minute or two and I need to check for damage and if something needs to be done then get it done and next time I will definately GO....unless I am tired....no, no, I'll go....yeah. I have to hope there wasn't any damage and it was some sort of electrical thing and backflow and blockage and pain but hey, I was an athelete for a long time so I am sure the old ticker can take a BIT more abuse.

Lene: see how much we think alike because I decided today that I was telling Linda that she needs to start recording and taking pictures of me when I look bad - so, like prop me up and take the picture don't drop ME or get me the oxygen and then take the picture so we get more of a record if possible of what is going on since I am freaking tired of people tell me (the only person with HYPOTHYROIDISM who is losing weight every week) "Well you look just in great health!" - why, do you have X-ray vision! I mean, yes, I am glad MORE of my hair hasn't fallen out or that I don't have like bone shards sticking out of me or my skin isn't a grey colour but EVERY day we go from "Are you okay", "You don't look very good.", "Oh you are taking oxygen.", "Well you look really good and healthy for someone so sick." AHHH!

alphabitch said...

Just so long as you steal the liquor outright and don't try to water down what remains in the bottle (and of course don't drink and drive!) I guess I can overlook it. Because it would really bum me out to pour myself a drink and have it be all watered down. Don't think I won't notice :)

Marla said...

Hugs. Hugs. and more Hugs.