Well, it’s been another bang up year full of far more downs than ups, but I survived it. And that’s a good thing! Here are some updates and retrospectives on the year …

My Liver. Some of the better news of the year, the liver enzymes in my blood have now been normal, or close to normal, for about 5 months. As a result, I’ve been able to get rid of the horrible steroids that were responsible for so much of my difficulties and or destroying my back (see below). I started out the year at 40mg and in another week or 2 I will no longer be on any steroids! It hasn’t been easy to come off this stuff, my mood and food cravings have been pretty severe, especially in the mornings. And worse of all, over the past 2 months or more basically every joint in my body has been sore and stiff 24 hours a day. I’m talking from my knuckles and wrists to my toes and ankles … and my ears of all things! Fellow AIH sufferers who have come off steroids tell be that this joint pain will probably last 6 months or so after I’m off the steroids. But I guess it’s worth it, some of the side effects of the medication are already disappearing. The rapid steroid removal is a bit troubling, but I’ll feel better about it soon (knock on wood). I have my 3rd trans jugular liver biopsy on February 11th - hopefully it confirms that my liver has not been further damaged. Will find out at my next doctors appointment in March. long wait!

My back
Oh my aching back. I hate it so! It’s a constant source of pain, discomfort, and frustration of not being able to do what I want to do. I have not been doing my physio as I should be. I find that I’m so stressed out and sore after doing just everyday things around the house that I can’t bring myself to do them. Trying to simplify things as much as I can, but still not enough I guess. Trying to come to terms with the fact that I’ll always have this pain and disability … but it’s so hard to accept and deal with. Went out to supper with my close family over the holiday, but I could scarcely enjoy it even after taking a morphine pill before leaving. Just having to sit there in an upright chair for so long while the waiters and cooks goof around. It’s hard to go out in public at all, I struggle with the simplest things sometimes and I’ve lost all impulse to even try and hide it … and and often looked at with disgust, fear, or pity as a result. That sucks.

Family situation
Nothing has really changed around here. Kids are the highlight of most days, balanced with frustration of them not picking up or pitching in to help with chores without being told to repeatedly. Normal i guess. My sister still awaits the arrival of her husband from Morocco and she suffers greatly from both the separation and the stupidity, frustration, and pain coming from all the moronic arguments that happen due to the long-distance relationship … seemingly on a daily basis. My Mom is doing ok, but I don’t get to see her much - once a month at best. She no longer has internet, so our interaction has diminished somewhat. But that’s ok as trying to relate at any serious level over the internet is just stupid anyway. My grandma, I’ve been trying to visit her for 3-4 months now and it never seems to work out. Need to try harder and just go by myself I guess, it’s important - she’ll be 95 years old this summer!

What I’ve learnt in 2007
I’ve learnt the true meaning and extent of pain … enduring both the constant daily pain and the most pain someone could sustain (I hope!). When my back was out and I willed myself up to go to the bathroom only to have my legs give out and fall on that stupid toilet … I let out such a scream, and thought I was going to die right there on the spot. And I still feel that pain every hour of every day. It’s horrible and it’s really ruined my personality and the interactions with those around me. It’s hard not to feel sour when in that much constant pain and seeing even the smallest thing on the floor as an obstacle and threat to my life!
It’s hasn’t been all bad. I also learnt the generosity of strangers. After I was admitted to the hospital for my back early in the year, I had to ask for financial help. Things were already stressed well beyond the breaking point financially, and then the added cost of having to buy all the little medical aids while I was confined to bed. I was faced with a situation where I could not pay rent or bills and had to find a way to pay for future physio, household accessibility things, chair and bed that were back friendly, etc. I don’t think I would have made it through those 3 months in the hospital if I didn’t have the support and security to know I at least had hope of buying the stuff I needed when I got home. I think about 20 people helped me out in my time of great need, most of them coming from the group of online gamers I’ve been playing with over the years and never met face to face, or for some of them, even talked to! … some of them contributed hundreds of dollars, some just a couple dollars. I put every cent of that money to good use to improve the safety and comfort of my everyday life and future. And I am truly grateful, it’s one of my life goals do to something truly nice for these people, and if I’m able, to pass-it-on anyway I can to others in need. Easier said than done in my condition of course, but I’ll do my best. It’s certainly changed my opinion of the average person … despite their faults or shortcomings, everyone has good in them and has value.

2008 is looking better and hopeful to get out on my own again and regain some semblance of my life before it ends!

This entry was posted on Monday, January 7th, 2008 at 8:48 am and is filed under Health/AIH, Personal. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.