Thursday, February 22, 2007

Run, Beth Run! On second thought; how about a wheelchair?

Okay, in a film comparison no one but total nerds will get, if I was in Logan’s Run, yesterday my life crystal went off; I am no longer part of the “beautiful” population (and I hope this isn’t followed with them hunting me down and shooting me with lasers). In less metaphoric speak it means that my Holter Monitor test came back and told the doctors what I had been telling them for many, many weeks – that my heart rate goes over 200 beats per minute. So, I have been labeled a “semi-urgent” case and am on the emergency waiting list to see a Dr. Novak, my new cardiologist. So is Beth on her way to full diagnosis, treatment and normal life? Not so fast! Because I live in the retirement capital of Canada with tens of thousands of seniors and socialized medicine, the time I have been told it will likely take me to see the doctor now that I am on the emergency list: six to eight months.

By now you’ve realized, that yes, I am about to do the “old woman on the bus who tells you all about her medical problems” thing; only I promise I’ll just talk about my heart and that I WON’T talk about my canary, my bowel troubles and how you can't buy anything for two farthings anymore. So, it is six to eight months until they START to narrow down exactly what my heart problem is and then START different types of treatment. “But maybe,” I tell myself, “The fact that I am awake 12 hours a day (for two days) now means I am all better!”

Except that I walked three blocks yesterday to the Y to hand in my doctor’s note saying “Elizabeth is not going to fence anymore, please give her some money back.” I had to stand for about five minutes before I got to the front of the line, then another three while they looked for the gym manager, Randy. So I start to write him a note, only by this time I am holding onto the counter to keep me upright. “Do you happen to have oxygen?” I ask, "That's what I need once I hit the floor." Actually, they do and within a minute I am in a chair, with two then three guys and an oxygen mask on. Of course, I keep pulling it off to mumble things like, “You know a month ago I was a national athlete.” They pull the mask down again. I pull it off, “I’m 33rd in Canada, you can look it up.” They pull the mask down again. Eventually I take it off and say, “Don’t I look fine.” They conclude, no, I don’t actually and want to know how I am going to get home. “Walk, of course.” Can I stand up then? I try, and fall back into the chair. They pull the mask back down again. My body is covered in um....glow, from what would be a total body know, those THREE blocks.

In case you are just joining the program and because there isn’t much about cases like me on the internet: I am a perfectly healthy 29 year old female……oh, okay, let’s say a female in her 30’s. I have always exercised and this last year I have exercised a minimum of five hours and a maximum of 15+ hours a week. My body is finally in really good shape.....except, my heart rate stays just under 100 when I am asleep, and rapidly increases during any exertion (above 250 beats per minute). This rapid exertion has become more and more sensitized in the last several weeks until now even walking several blocks can risk loss of motor function or consciousness. There is no biological factor (like hyperthyroidism, or diabetes, or loss of calcium, etc) and every beat my heart gives off is perfectly normal; there isn’t a murmur, erratic heart beats or changing rhythms. Only, it appears that because my heart beat rises so rapidly (160 beats per minute for taking a shower, 170 for walking up a hill), that I go into an anaerobic state where my heart cannot beat enough to give me enough oxygen. This combined with the fact that my heart is doing the equivalent of several continuous marathons a day is exhausting my body and the heart itself. If I try to do something like....take a long walk or go for a light jog, my heart, as it doesn’t have enough oxygen continues to beat faster and faster; but in doing so, is moving less and less blood, putting me into more oxygen deficit. This continues until my heart is beating so fast that is no longer moving any blood at all (at which time, since no blood is reaching my brain, I die – that’s BAD), or I pass out (and we have to hope that my heart isn’t pushing so hard that I go into “congestive heart failure” – this is also BAD). What it means is that I sit, a lot, and on bad days, I can’t move without assistance. And that towards the end of the day my heart hurts (because it is a muscle that is getting fatigued and not enough oxygen too) – not that “Oh it’s burning and moving down my arm” heart attack hurts but like a muscle you have used way too much that day achy hurt. The problem is likely electrical but may be this “mystery” condition called IST, which usually strikes females in their late 20’s and 30’s and sometimes can’t be fixed – that’s just the way life is FOREVER. Obviously I am hoping it ISN’T that.

Two life changes are freaking me out: first is the speed at which, by necessity, I am now labeled “disabled” and the other is the question, “Who is Elizabeth McClung?” We are halfway through the process of getting registered for the disabled door to door pickup disabled bus service, we have the “handicapped” sticker for my parents car, in a few days a technician is coming by with my home oxygen kit to give me instructions on use and we are pricing out mobile wheelchairs. In some ways I feel like a fraud because, unlike many people who are struck with lifelong debilitating illnesses, I am only a tourist to the limitations and frustrations of trying to figure out how to live a life in an “able bodied” world (well considering my wait, how about I’ve got a long term work visa instead of a “tourist”). And many of the people I know still haven’t accepted that the person they knew three weeks ago, isn’t the person of today. That I can’t walk ANYWHERE unaccompanied unless I know is it a well traveled street so that if I collapse, someone will call 911. And I have to figure out a way so that I can get four blocks each way to the library; six blocks to downtown for shopping; five blocks to the post office. Because in the last week, I passed out or lost body control 50% of my trips – and that’s not good enough to get through the next 8-12 months. So I am trying to be realistic; getting walking sticks for my good days, and maybe rent a wheelchair for weekends so we can go shopping downtown (see, I can’t use a regular wheelchair unless someone is pushing because moving the wheels myself will raise my heart just as fast as walking). I’m open to suggestions. I could get a car, except that sometimes I pass out AFTER I have been walking (like around a shop) when my body tries to cool down or reoxygenize. So ask yourself, knowing that, do YOU want me in a car coming towards you in the oncoming lane?

Of course, our local paper has been running a series of the typical “You could have a healthy heart....if you only chose to” with the whole, “If you just exercise regularly and stop smoking” you will have a wonderful healthy heart. Sometimes that is true and sometimes like Linda’s cousin, a fungus gets into your heart and just eats an entire heart valve. Guess the “Just to let you know, one day your heart might just randomly get FUCKED UP” kind of articles don’t sell quite as well. You may be sensing a bit of anger. That’s probably left over from yesterday’s late night meltdown where I was hitting myself in the head screaming “Who AM I?” You see I have always been the girl who says, “I want to.....” and then figures out to do it. I want to run a 50 mile run; okay let’s train for that. I want to go on a 500 mile bike ride; let’s do that. I want to walk the cities of Europe; done that. The first day we moved back to Canada we went for a run along the seaside. We don’t have a car, because why would we, we are two healthy women who can tote a few groceries and use the money we would using on a car to buy…groceries. All my life I have been that person who gets knocked down, gets broken and comes back, right toward that goal moving faster than ever. I’m the person who was always willing to push her body farther and take more pain to achieve MY dream. Mr. Ho told me the first time I wanted to go to a competition that if I did, I would never use club equipment again. I sold some of my belongings and bought everything I needed and went to the next tournament (like what, BLACKMAIL is going to stop me?). I’m Elizabeth (fucking) McClung and some coach calling me stupid or hitting me or refusing to teach or train me is only going to make me train twice as hard. I’ve hiked 24 hours without sleep, I’ve trained for days without food or water, I’ve carried an 80 pound pack on a fractured spine and I always get back up (remember, I’m obsessively determined, not necessarily bright or prudent when it comes to personal health). I’ve walked the cities of Asia, Europe and North America. I walked to the edge of the Hudson’s Bay in the far north to watch the seals on the ice floes, I’ve body surfed Laguna, California; and run along the streets of Malacca, Malaysia. I can’t train my heart to get better; or double the exercise; or overcome it with will power and determination. Yes, I write and I think and I have many other abilities, but I have always known that my body was there for me. And now I have a body that can still do all those things, that still has all the muscles for those things except for one, my heart (you know I’d be playing Murderball if my heart would let me). I am a body in perfect form, who is having Linda help me walk so I can go around the block. So who am I?

For the future, I already decided last week that if I ever get even 75% of my heart capacity back I am going to do what I never finished training for in my 20’s: a Triathalon (there’s one call “Tri, girl, Tri” in Oregon that looks good). But that future seems a long way off today. I guess reality shifts take a bit of adjustment. I asked at the Y if they have workouts for people with heart conditions, it turns out they do but at TWICE the price (like $400 for 7-8 weeks). Thanks YMCA/YWCA! What was that about open and equal participation? So, that’s it, no more talking about my heart until something changes (like I get treatment, or go to the hospital). And I’m pretty sure I’ll figure something out somehow. I mean, after all, I’m Elizabeth (fucking) McClung, do you think I’m going to roll over just because God and human biology have decided to tag team me? Not likely!


kathz said...

It's horrible and unfair. I hope the medical people find a solution. And I hope that everyone who discriminates against people with disabilities trembles at the thought that you're going to get them!

Wendryn said...

At least you are *on* the list now...

I agree with kathz. Be afraid, discriminators. Be very afraid.

Good luck. I hope you find solutions that work.

Elizabeth McClung said...

Yes, this was something I talked last night with Linda - that if I get a wheelchair, I disappear - no one will look at me or speak to me or chat about the weather like you would to a stranger, I would become a "non". So yeah, this is a good education for me and I expect it will continue to be (I already have great empathy with people suffering from conditions like Chronic Fatigue).

Tomorrow I will bounce back to write about more taboo subjects (the blog from two days ago was blocked at government offices because it used the word "hymen" in it - dirty dirty me)

Elizabeth McClung said...

Oh - and thanks very much for the support - someone stopped me today (as it was sunny and I was going for a short walk) to ask how my heart was: unfortunately I was trying to get an incline so I was like, "wheeze, wheeze," - ohhhhhhh soooooo sexy!

Sfrajett said...

Hey don't worry so much about being sexy or decrepit. It takes months to lose significant muscle tone--it's just that we become so workout obsessed, we can't bear it. Appearance-wise, you're fine.

But now, this waiting list thing. That is fucking ridiculous. I'm assuming the wait is for a covered visit. But is there any way to just see someone? Pay for it? Creidt casrd? Come down here, just for one visit?

I'm worried and this time line is wrong. It may be easier to swing a consultation than you imagine. But I don't know.

We have several people in wheelchairs at the law school. Some are severely disabled. Nobody looks through them. You will have friends and community wherever you go. And people, many people, can be lovely.

Thinking of you and sending you encouragement and optimism. You already have the strength part covered.

Elizabeth McClung said...

Thanks for the chin up. I have thought the private consult route but unlike the UK, Canada doesn't seem to have a parallel track private system like Bupa - and with my folder now looking in inches, I am not sure about trying to transfer that elsewhere and back again (plus the danger of the male medical ego "You went to someone else and now you want me to see you?")

I will continue to track my progression in terms of exersion, blood pressure, BPM and the ratio of "kick back" to activity (say going for a walk one day for an hour equals four hours with pain, mental and physical lethargy the next). If it continues to decline then I will take action; which at this point would be to get my needle phobic friendly nurse to put a butterfly teflon tube into my arm, then have a fencing footwork session in parking lot of ER until I am or do pass out and be passed immediately onto the Hospital Cardiologists (perferably on a Monday as all the techs go home on the weekend so no tests can be done).

Strangely more people talk to me on the street now that they know about my heart - Does this mean I had an aura of "scary" before and have now become mortal?

GayProf said...

I would have been "renewed" two years ago.

I am sorry about all of the other stuff. It sucks when our own bodies betray us. If there is anything that I can do from my distant place, please let me know.

Heather said...

It's a small thing in the scale of things that need seeing to but maybe the library can come to you. Here's a link to the right Victoria library services page.

And about the waiting list: yes it's too long and yes it will privilege men over a certain age. You may need to apply pressure to be moved up the list past the people needing garden-variety angioplasty. Ever think about talking to the press about the kind of heart trouble that doesn't come from age/inactivity/food choices?

Elizabeth McClung said...

Thanks for the link - I haven't thought about talking to the Times Colonist since they managed to miss reporting an entire PRIDE parade marching down the centre of town and past the parliment (kinda figured there was some social blinders on) but maybe alternate papers like Monday Magazine would be good? Of course, having the slightest idea what is happening to me would be cool first.

Elizabeth McClung said...

Thanks gayprof, as soon as I can figure out how to exploit you - I will let you know ASAP!