Going Downhill...
Eventually I did have the revision surgery but I never had a good result with it. It gave only patchy coverage and seemed to affect the coverage in my right leg as well. Instead of the spread being halted, it continued further and the dystonia developed in my left leg as well, which left me needing a wheelchair to get around. The spread continued up my left leg, then began badly affecting both my arms as well.
Progression in my hands from mid/late Jan '09 (R hand) to mid March '09 (L hand and arms)
My gastroparesis also became worse. Through 2009 I lost a dramatic amount of weight. I tried various medications, but all came with intolerable or dangerous side effects. My GI specialist and nutritionist suggested through the year that I consider a feeding tube but having had enough of treatment and hospitals all round, I refused.
By late 2009, I had no choice. My body weight had fallen to below 30kg and I could feel myself slowly dying. I was keeping almost nothing down, just living on a few tiny servings of porridge each day because it was the only thing I could eat without intense pain or making my vomiting worse. I could barely hold my head up some days; I had even taken to sleeping on the couch, because I was too weak to get into my bed. In October I went into hospital to have a naso-jejunal feeding tube placed. I was there for three or four weeks, but I was so sick by that time that I barely remember any of it. One of the few things I can recall is an interrogation by the hospital’s psychiatric team, because someone had decided that being a dangerously underweight young woman, I was obviously suffering from anorexia nervosa. Someone had never heard of taking a history before making a diagnosis, it seems. It was one of the most horrendous things I have been through. My bed was by the window, and four of them came in in a little gaggle and stood with their backs to the window so that I couldn’t see their faces. Then the questions began – Did I think I was too fat? Was I deliberately starving myself to lose weight? Hell... My history with psychologists and psychiatrists isn’t good really. It’s a bit like the highly experienced pain psychologist who looked as though he’d been slapped with a wet fish when I told him my history, then told me I was too stressed and gave me a relaxation CD – and had the nerve to phone me and tell me I was making a mistake when I refused to continue seeing him. Or the psychiatrist who put me on a medication that made me nearly suicidal, promptly went AWOL and then lectured me for stopping the med without discussing things with her first...
To return to the story, the NJ tube saved my life, but didn’t help a great deal beyond that. The food, if one can call it that, that goes through the tube made me feel ill, the tube made me feel ill and more depressed. It came loose more than once, and unlike a simple naso-gastric tube, an NJ tube is generally placed under sedation or anaesthetic. I was having constant nosebleeds with it, constant colds and after it came out for the third time, I refused to have it replaced.
By late 2009, I had no choice. My body weight had fallen to below 30kg and I could feel myself slowly dying. I was keeping almost nothing down, just living on a few tiny servings of porridge each day because it was the only thing I could eat without intense pain or making my vomiting worse. I could barely hold my head up some days; I had even taken to sleeping on the couch, because I was too weak to get into my bed. In October I went into hospital to have a naso-jejunal feeding tube placed. I was there for three or four weeks, but I was so sick by that time that I barely remember any of it. One of the few things I can recall is an interrogation by the hospital’s psychiatric team, because someone had decided that being a dangerously underweight young woman, I was obviously suffering from anorexia nervosa. Someone had never heard of taking a history before making a diagnosis, it seems. It was one of the most horrendous things I have been through. My bed was by the window, and four of them came in in a little gaggle and stood with their backs to the window so that I couldn’t see their faces. Then the questions began – Did I think I was too fat? Was I deliberately starving myself to lose weight? Hell... My history with psychologists and psychiatrists isn’t good really. It’s a bit like the highly experienced pain psychologist who looked as though he’d been slapped with a wet fish when I told him my history, then told me I was too stressed and gave me a relaxation CD – and had the nerve to phone me and tell me I was making a mistake when I refused to continue seeing him. Or the psychiatrist who put me on a medication that made me nearly suicidal, promptly went AWOL and then lectured me for stopping the med without discussing things with her first...
To return to the story, the NJ tube saved my life, but didn’t help a great deal beyond that. The food, if one can call it that, that goes through the tube made me feel ill, the tube made me feel ill and more depressed. It came loose more than once, and unlike a simple naso-gastric tube, an NJ tube is generally placed under sedation or anaesthetic. I was having constant nosebleeds with it, constant colds and after it came out for the third time, I refused to have it replaced.
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