When I grow up, I'd like to be well.

This is the long version... (Part 1)

It says I started writing this 9/28/10 at 7:59 pm... I haven't been able to finish it, but thought maybe it would be easier broken up into a few posts. I guess this is part one:

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It seems to me most people have a variety of recurring dreams; throughout the entire time working in childcare this was mine: I would have the kids with me. The kids would go missing, sometimes right in front of me... just disappear. I would go around everywhere asking if people had seen my kids. I would tell them that something bad had happened to them, that I thought someone took them. Reactions ranged from those people ignoring my like I was invisible to laughing at me. Eventually, I would find the kids- lifeless, in pieces, stitched into walls... I'd find them in a myriad of ways, but never alive. I would be really upset, because I knew it was going to end like that and no one had believed me or tried to help.

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When I started feeling not so good was maybe five years back... Well, it was longer than that, but when things started to get on-again-off-again bad was about five years. First I started having really bad heart palpitations- they would knock the wind out of me. I saw a cardiologist. I had tonnes of tests- everything was fine. About a year later I returned to my GP. I would go through bouts of gasping for breath; I was tired all the time and thirsty, really thirsty. Went out for bloodwork; came back for answers- everything was fine, though slightly anemic. I was on iron pills for three months. The anemia went away, but my symptoms didn't. I was told it was likely a virus that would pass and was told to continue taking a multivitamin. Then, suddenly, everything I was complaining about went away.

That was fall. The following spring when my seasonal allergies started up: I. could. not. breath. I was given Ventolin and put on Advair. When that didn't help, they added more inhaled corticosteroid to the mix. I went from having blood sugars within range (with a good dose of regular bad lows) to having blood sugars around 20 mmol/l (about 360 mg/dl) all the effing time. I felt disgusting while I got my numbers under control... and then once allergy season ended, I'd stop the inhalers and deal with the opposite: major persistent lows.

This was just the beginning though. Every year since then my ability to breath, especially during allergy season degraded. Every time I got a cold (which went from about never to about three or four times a year) I would end up bacterial respiratory infections. I became familiar with the various ER's in the city. I've had x-rays and bloodwork at all of them. My inhaler medication just went up and up until it couldn't go up anymore. Sometimes it would get so bad I felt like I was drowning in my own phlegm. Again, I went for tests and breathed into all sorts of tubes- everything seemed fine. All they could figure was that it was some sort of allergy induced asthma.

And then this time last year, shit really fell apart. First, my skin started peeling. Especially from my scalp. I was parched all the time. Then my hair was falling out in bunches. My skin was bruising over the smallest bump and whenever I tested my blood I had times where I couldn't get them to stop bleeding. And, then, by this time last year I got tired... really tired... Like pre-insulin tired. I had times where I could muster up enough strength to get out of bed once a day. I would get up, practically crawl to the bathroom, clean up, grab a glass of water, go pee and make my way back to bed. The worst of it I remember lying in bed one night, my pulse had slowed right down and I had to actually make conscious effort to breath and in my head I was thinking 'If I fall asleep, I don't know that I'm going to wake up from this.' I fell asleep thinking of a list of what to do and who to contact in case I didn't wake up. I never wrote it down.

I can't remember now if it was before this or after that I went to my family doctor. I remember listing all the things that were happening and saying "I feel like I'm getting diabetes all over again." The colour drained from her face and she checked off almost all the tests on the bloodwork requisition sheet. This was the second round of bloodwork. She started prepping me for all the things that could be wrong. I remember none but the first- organ failure.

This would be the abbreviated version...

I feel like I've been away for a while. I keep writing about stuff that's going on, but not posting them. It's been a shitty couple weeks... well, it's been a really shitty year. Today was not good. Crappy memories of crappy things and tomorrow is the graduation I would have gone to had I not gotten really sick this year. I was going to go, I guess for my friends, but now I really don't feel like it. I feel like a bit of selfish jerk, but I know it will go in one of two ways: I end up crying and feeling badly or I end up pretending it's all good and go cry on my own. I know in the long run it's not that big of a deal that I'm graduating later...

Really, it's not even about the graduating part. I'm just sick of being sick and not having people around that get what it's like. I've been better the last month or so after changing my diet a bit. I still don't feel very well whenever I eat. I think everyone that knew I was sick is just really happy I can get out of bed and do stuff again. I think they think it's over. Just a diet change and its done. All better... But, I still don't have a diagnosis of anything yet and I keep worrying that not eating gluten and dairy just helped, but are not the real culprits. Maybe that's a silly thing to think, but I've had so many tests where they were sure they knew what it was, only for stuff to come back negative... or other times where they were sure everything was fine, only to get frantic calls I needed other tests done ASAP, only to find out those scarry tests were actually false alarms. I don't think about a lot, but it's more of an underlying worry that they'll finally figure out what's going on and realize it's something aweful and something they could have fixed had they figured it out when I first started complaining about stuff.

I think that, all of that, is why I don't want to go my would-be grad... It is just a very strange feeling to watch people move on, while you lie stuck in a rather painful limbo.