I'm actually not on any drugs right now. The drugs I was on were: Prednisone and Cytoxan - think that was it, I don't remember another. I started taking the drugs erratically later on into my treatment, I didn't always take them when I was supposed to (there were days when I missed taking the drugs) - possibly because they tasted like crap, their directions on how they were supposed to be taken (ie. take 30 minutes after/before eating, with milk, etc.), or I simply didn't think about them as much as my symptoms decreased. I think that's when I was taken off them because it was considered "self-medicating." My condition was monitored for a bit while off the drugs and since it didn't seem to change I was kept off them.
Since people are probably just going to assume what symptoms I had if I don't mention them, I will go over them: It started off with a cough. I thought it was just a cold/flu, but after two bottles of cough syrup and two weeks it still didn't get any better. I tried exercise and noticed my stamina was EXTREMELY low: I had trouble doing any pull-ups, and when I exerted myself the cough just got worse. I got muscle pain(not from exercise, just daily tasks) and arthritis: un-bending my legs and arms became very painful (ie. from a seated position). It was less painful to stand or lie down, and it got to the point where going down steps was difficult and painful, and it was too painful to drive my stick-shift car. If I wanted to go anywhere, I had to be driven. I had loss of strength: going up stairs required a lot of exertion, I remember almost crawling up the steps in my house one day when coming home from class (I think the symptoms started at or near the end of the semester, so I didn't need to deal much with school); night sweats: I would go to sleep, then wake up in the middle of the night, sheets drenched in sweat, nauseous from the smell, and freezing. As it went on the chronic cough just became stronger and more often. I had ear and throat pain and every time I coughed I would feel pain in my throat and ears. I couldn't eat hard things like crackers, because eating them became painful. I became drained in the middle of the day very often, although I don't remember when that started. After about 1 month I went to a holistic doctor who said I had some kind of nutrient deficiency, and was prescribed various minerals and some type of fatty oil(to ingest) for the joints. After 1 additional month of pain due to that holistic quack, I went to a real doctor who told me I needed to go to a hospital right away after looking at a chest X-ray. First I got to freeze my ass off in the ER for a long time, then I was admitted. They initially thought I had pneumonia, and also went over other possibilities like STDs. After being in the hospital and tested for for 2+ weeks (which felt like an eternity), after having talked to about 5 doctors, thinking and feeling like I was dying, I finally got a diagnosis. I think the reason I didn't have as many symptoms as some people, or required as much medication, was probably because the diagnosis was made early on and I was 21 at the time.
After I was released from the hospital I never joined any group because I didn't want to be part of any "self-pity" group, wallowing in & perpetuating despair with others - that's how I saw support groups. I wanted to live my life as WG-free as possible, not even thinking about it.... but I guess times like these, WG likes to slap me in the face and say "No, we won't let you do that." To me, talking to a support group was just giving WG more a part in my life than it needed to have, kind of like additional validation and power over my life or emotions. I still didn't come here for sympathy/empathy or emotional support, but to get answers from other people who might be experiencing what I am.
I was just going to go over my symptoms, but I see it also kind of turned into my "story."
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