It’s been 3 years!
It’s April, this month marks 3 years since I returned to Canada after my postdoc and PhD in the US. That’s a long time. And what a mess it’s been for the most part!
When I returned to Canada, I was burnt out from research and in a depression of sorts. My intention was to take a few months off and just relax, something I never did between all my other major life changes (i.e. between my various degrees). At the same time, I figured that I would be able to stay with my sister for a short time, help out a little bit with her kids (who were still in after school daycare at the time!) … all this while myself getting settled back in Canada and start looking for a job.
Well it certainly didn’t turn out that way! The first few months were fine. Getting to know the kids as their unique personalities started to develop, spend some time with them, have fun. Made the decision to move in with my sister, finding a nice place to live closer to her work and where I could be around, but still independent. That didn’t last too long. I quickly became wrapped up in all the household disagreements and troubles … then I started to get sick.
Summer rolled around and I thought that I had developed diabetes. Delayed taking all the tests my doctor prescribed because I didn’t yet have my medicare card and I guess I didn’t think it was that serious or urgent. BIG MISTAKE! I think it was September when I started to turn yellow and feel sick. By late October I was in liver failure … still convinced that it was ‘just’ diabetes, and perhaps a gallstone blockage that was the cause of my problems. I monitored my blood sugar at home and took the necessary steps with my diet restrictions, but wasn’t enough.
That first ‘attack’ was scary. Little did I know that it was the first of many such emergencies, and that now, 2.5 years later, it would all be happening again. during that 2.5 years, I worked fairly hard to keep with my treatments. I was taking blood every month and visiting specialist every month or 2 for a checkup. It took almost a year before I started to see real progress. And then another year and another treatment plan before I was in a position where I thought I had my disease under control.
Sadly, during that time, I’ve pretty much lost all contact with friends and even the outside world. Now lead a very isolated life, even the online diversions and interaction I had before are now gone - as they no longer hold much interest to me. My back finally gave way to strain of my extra weight having been severely weakened by the medication I was taking. Now I have what is I guess a disability, though I still have a hard time thinking about it like that. Makes me angry when people think and talk about me as being ‘handicapped.’ I’m not really. Lots of people are a lot worse off than me, it’s kind of diminishing to their struggles to say I’m handicapped. I’m still able to get around on my own and take care of myself. I do have some serious limitations though and they interfere with my daily activities and severely limit my future possibilities. I guess that is the definition of handicapped, eh?
Hard to accept. Even harder to act on and resolve! I don’t have a clue what to do with myself day-to-day. And my future? It’s even more uncertain, I don’t even know how to get myself out there to test my limitations and endurance in the real world. All I can do here is hold my own and try to focus on keeping myself alive and not let myself fall further down that slippery slope and lose all my independence and mobility. It’s so hard though. Same thing day after day and day. Making little or no progress and can’t see hope for the future.
Yet I fight on as best I can. Sticking to my treatment and following my doctors wishes. I’ve been trying to get myself out walking every day for the past few weeks, sucessfully. It hurts a lot, both in my back and in my liver. but I seem to recover after a few hours rest and some nourishment. Right now, I’m trying to focus on getting off the prednisone steroid again. I literally hate myself and how I act on it. Moody and angry most of the time. Can’t sleep or dream normal. Food cravings and overeating a constant (i.e. every 30 minutes) struggle. Add to that all the internal and external physical problems it causes … it’s clear that is the first thing that has to go in order for me to progress.
I did it before. I was at normal liver function for 4+ months and off prednisone completely for 2 months. And just in that short time I started to feel more normal, more like my old self (just with all these new ‘handicaps’). It felt good. So I will be seeing my specialist in Montreal next week. Hopefully, the blood work will look better and we can start thinking about tapering off the prednisone again. Quickly this time! Last time was quick as well according to them. But it was 6 months or more. I can’t wait that long this time. Wasted too much time already and I can’t handle the withdrawals for that long. The joint pain is just too much on top of everything else. I guess it’s not a choice, not up to me to decide, whether I go off fast or slow. I’m at the mercy of my liver and my doctor. But what I will do is make the commitment to be absolutely vigilant about getting frequent blood tests to monitor everything. I didn’t take that serious enough during the last steroid reduction and I think I may have 1) suffered unnecessarily for extra months, and 2) was left with unanswered questions and extra uncertainty regarding the status of my liver leading up to my ill-fated biopsy in February. so lesson learnt I hope!
May 1st, 2008 at 1:19 pm
Just read your recent post it sucks that you’ve had such a rough time these past three years. You are a really gifted writer Pete………..will visit your blog again to catch up on your news and follow your progress. Like you my son took a long time to get his AIH stable. It has changed his life dramatically - I would swop places with him if I could. Let’s hope the next few months will be kinder to you.