Friday, February 6, 2009

How much can a person take

I'm in so much physical pain right now. Its fumming from my lower abdominal area as if someone were burning me from the insides. I suppose that's how it is supposed to feel when one has bleeding ulcers in her intestines. But along with this physical pain is an emotional pain. It has nearly been two years of this sickness for me. I feel an overwhelming indebtedness to my family. My mother and husband have been there for me every single step of the way and I feel like such an incredible inconvenience. All the times we couldn't go places because I was too sick or the days they spent with me in the hospital or going to get me medicine or not being able to eat at certain places - all because of me. And not only that, but my attitude has been awful. Being on steroids for the treatment makes me go from one extreme to the other like a crazy person and its always my family that gets the worst of the mood swings. I feel awful. My heart hurts from what I've put them through. In addition to that, I feel emotionally all over the place because I can't control my own body. On monday, I got out of class, got in my car, and wasn't able to make it to the bathroom. This happens all the time! There is absolutely nothing I can do. Sometimes I have a couple minutes and sometimes I have 10 seconds to get to the bathroom. It was incredibly painful too. And of course, every light was red and cars were everywhere and I was just praying to somehow just get home and to the shower. If I had known that all the medications wouldn't help and that this is where I would be today, I would have had my large intestine removed when I was diagnosed. But the prognosis of patients with ulcerative colitis varies so greatly.... I have a friend who was diagnosed with crohn's disease in the past year and she has taken the exact medications that I have and now she's doing great. She's living and enjoying her life. Yet, I'm on 40mg of prednisone, immunosuppresents, 5-asa anti-inflammatories, and then all the drugs I need to counteract the negative effects of those like blood pressure, anti-anxiety, pain medicine, sleeping pills, etc ($14,000 bi monthly before insurance worth of drugs) and I'm still at this low level of function. I don't have a "poor me" or "why me" attitude about all of this because I know we must all have trials and battles and things to overcome in life in order to feel successful but gosh this is just one of the worst things I've had to deal with so far. I wish there was more information available about the cause of this disease because my husband and I are planning to start a family when I graduate in two years and I would never want to pass this disease on to another person. My surgeon did mention that I may not even be able to get pregnant. That thought breaks my heart. I've never been a huge kid person but I always knew I would have kids of my own. The thought that I may not be able to because of this hurts. I know that is the last thing I should be worrying about at this moment so I'm not going to let it bother me now. My focus now has to be getting through the next 27 days of 3 day a week classes. That is my biggest challenge right now is actually being able to leave my house, drive to school, and sit through classes never knowing when I might get sick. I missed a class on Wednesday morning and still feel so bad about it. I try to explain the situation to my teachers but I know they don't know me from Adam and every word could be a lie and I'm sure they hear more excuses that anyone so why should I be any different? The thing is I'm not one of those students who just doesn't show up for class. I try so hard and feel so bad when I let people down.

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