Feels like I’m getting worse …
Things seems to have taken a downward turn of late. Swelling in my abdomen is getting really bad again … I think I’ve regained about half of what I lost immediately following release from my hospital stay. My feet are a mess - feels like they are on fire while taking a shower (even though the water is only warm on rest of body). Feet turn purple … seemingly at random - not due to cold, elevation, time of day. Pain around the liver area, especially along the inside of my right ribs (as if something was getting pushed against it). Yesterday I had probably the worst case of leg cramps I’ve ever had - sent me to the bed screaming (for about 5 mins) from the pain coming from both shins. And on top of that, I’m getting itchy again - which apparently is an indication that by bilirubin levels are rising. Got this gland or lump in my neck/chin area that get swollen and painful periodically - not sure why. And I’m really tired, taking naps morning, noon and evening … then waking up at 3am not able to sleep. Trip to grocery store is exhausting to me. So ya, liver is either not functioning as good as before, or is getting attacked more rigorously.
Not sure what’s up. Could be that the doctor lowered by prednisone medication too much, allowing the disease to attack my liver more. Or perhaps the Imuran is starting to have negative effects, as I hear it can over time. Or perhaps the disease is just being more active than before due to some unknown factor. I tried to rush my doctors appointment about 2 weeks ago (to feb 28), took my blood test in preparation for it (feb 22). A day later, they called and moved my appoint back almost to where it was before (march 7th). So now I must wait … and I can’t even take a more current blood test because I don’t have the forms for it. 
Will have to work off 2 week old information which I know will not show how bad i’m feeling right now. It’s all pretty frustrating.
I had the opportunity to talk with someone over the internet about getting the abdominal fluid drained. He’s an older guy, about 55 yrs suffering from another liver disorder related to a tumour on his liver. He went in to get his fluid drained yesterday and I spoke to him afterwards. Says that he had immediate relief from the procedure, from pain and discomfort .. not to mention easier to move around. They removed 6 litres of fluid (about 14 lbs) and the person doing the procedure said they could have easily removed another 4 litres if it wasn’t for the orders left by his doctor. It’s apparently a fairly simple procedure, they just stick a needle in you and hook it up to a suction apparatus. Problem is where to stick it. They take an ultrasound to find the pockets of fluid. I haven’t had much success with ultrasounds in the past, difficulty getting through my chunky exterior. But that was when they were looking for gallstones and bile duct obstructions … perhaps just looking for these pockets will be easier (I imagine they are quite large). Anyway, I’m going to ask my doctor to sign me up for this. He’s been hesitant to do this before … but I think it’s needed. There is no way that my diuretics can get rid of all this fluid, and I have a feeling that the diuretics are effecting the circulation to my feet. If anything, I need something to jump start the fluid removal just so I can get around a bit easier … perhaps it will help with the tiredness also.
In other news, just came to the realization that it’s March 2006. Almost a YEAR since I left Northwestern and Chicago. Doesn’t seem that long. Fairly discouraged by my lack of life progress over the last year. Returning to Canada hasn’t been as fruitful as I hoped it would be, even ignoring the health problems. unemployed, bankrupt, no social life, sisters life problems remain - and I’m starting to feel like I’m becoming more and more of burden (both financially and emotionally). Can’t seem to break the downward cycle. Contemplating asking the doctor to downgrade my health status from temporary disabled, to long term disabled - at least I’ll get a bit more cash that way. He’s got to renew the forms when I see him anyway. Not sure what he’ll recommend.
