Alicia (![[info]](http://l-stat.livejournal.com/img/userinfo.gif){kind=small} aliciak) wrote,@ 2007-02-15 21:37:00 |
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And the beat goes on...
I've been feeling more colitis sick lately (wow, is this the 3829329th time I've thought/written/typed that?). As if I already don't have intense fears about everything as it is b/c of colitis. As always, when my physical state worsens, so does my mental. Last weekend, my goal was to not cry at all. I had spent the past two weekends crying a lot, like many hours. I actually succeeded at this. Even though I felt crappier (man those puns NEVER get old, do they?), I held back the tears that arose once or twice (not exactly healthy either) and did a few productive things.
Today, I went to the doctor, also for the 3829329th time I think. But, everyone goes every two weeks. Riiiight. My doctor still thinks I'm "ok" right now, that I should keep doing what I'm doing. I was expecting a Prednisone prescription, a Colonoscopy appointment, or what happened, which was nothing really changes at all. No, I'm not that bad, I realize that, but I don't feel well either. The only difference is that my meds are upped a little, which would have happened regardless b/c my bone marrow, blood cells, etc. haven't received negative effects from my new drug, azathioprine. I wish I could get used to feeling shitty a lot, and not care about shitting myself and cleaning up the mess, and continuing on merrily, but I just can't. Could you? Another thing that made me happy and also peeved was that, I asked my doctor hypothetically, "Ok, so if I call you in a week to say I'm bleeding and going to the bathroom 30/day again, what then?" We do predinsone again, try again with a higher dose of new drug. If that doesn't work, then some of the more experimental drugs. I had thought I was closer to surgery, i.e., ripping my colon out and making my small intestine into a pooping mechanism, but no. I should be happy with this, this possibility of something "working," but it only means more trying drugs that aren't guaranteed to work. It's depressing, a letdown up to this point, and exhausting.
My 13-yr old cousin became diabetic recently, and it was such a blow. Unfortunately, diabetes runs in our family. My aunt (my cousin's mom), my deceased grandfather, my mom. Not the obesity or poor lifestyle kind, the type that is soooo managable if people didn't feed their kids crappy fast food all the time (I'm generalizing). When she started urinating a lot (one of the first signs), her mom wanted to test her blood, and she said, "If I'm diabetic, I want to kill myself." Her mom hasn't dealt with it all that well sometimes, and having watched my mom almost die from it in the beginning, and struggle with it at times, I would have the same response. I did, and do, have the same response to this disease I have. I can't imagine being 13-yrs old and getting dealt such a blow. She's worried about people not liking her anymore, that she sort of has "cooties," etc. It's times like these that I become more humbled about my own condition, because it drives home the fact that I am not the only sick person out there. It's hard to remember other sick people though when you are sick yourself. It's hard to care about other people's pain when you are in pain yourself all day.
When my mom told me about her, she gave me her hospital number. I hesitated about calling, b/c honestly there's nothing you can say. She's devastated, just as I was. She wants to die, so did/do I. I promised myself I wouldn't ask "how are you?", but I did. It's so natural, but sometimes I find it insulting, especially when the real answer is obvious, but customarily, we say the opposite. "Fine, I'm fine." I hate that question, and I hate even more the answer I have to deliver. A few days later, I crocheted her a little stuffed heart and wrote her a note to mail along with it. In dealing with tough situations, I've stopped (I don't think I ever did this though) spewing out meaningless words like "It'll all be ok", "You're gonna be ok," and "Cheer up." Again, insulting. Being positive is one thing, being stupidly cheerful is another. I wrote her a note basically saying, "I don't know if you know I got sick a few years ago with something different. It is such a blow. Just know that it's ok to cry and be upset, but also remember that so many people love you so much, and they always will, and they're gonna help you as much as they can. I try to remember this too." I sewed a little heart for my mom when she first got sick and could barely move, eat, etc. and I brought it to her hospital bed. When she came home, she put it on her nightstand, and said that sometimes that heart was what kept her going. It meant us kids, her life, everything. She'd hold onto it, and it still sits there today. At a family birthday party a few days after my cousin got out of the hospital, my mom told me she showed everyone the heart, loved it, and carried it with her diabetes stuff.
I wasn't even planning on writing about her, but perhaps that is a positive occurrence, as I moved on to someone else's life, instead of wallowing away in mine. Even though I feel this slight sense of happiness, at her reaction to my note and heart, when it comes down to it, nothing really helps in the end. Not all the love in the world will make you want to keep going if you're in enough pain, if you feel so defeated, depleted. I've learned that all too well in the past year, that although I am surrounded by loving people, a loving boyfriend, and a fading memory of the life I loved, lost, and crave, it's not enough. I can think about being in love with Ian and downing a bottle of pills with gin all in the same minute. I can think of all the children I babysat, taught, watched, held, loved, and the children I have yet to bare, and jumping in front of a bus comes to mind shortly thereafter. It's sick and yet painfully real. So, I think about my cousin, myself, my mom, and so many other people and ponder what the "right" outlook is, what spin should be put on mind-blowing diagnoses, and I can't come up with anything sufficient. Do we go on b/c we know it'll turn out well? That's naive. Do we forge ahead b/c we have faith in some higher power, or modern medicine? That's not a guarantee either. Do we keep living b/c we have to? No, we never "have to." Instead, just as there's always a chance of getting this or that illness in the midst of a good life, the same goes with happiness, satisfaction, fulfillment. There's always a chance of getting that too, in the midst of difficulty.
I've been feeling more colitis sick lately (wow, is this the 3829329th time I've thought/written/typed that?). As if I already don't have intense fears about everything as it is b/c of colitis. As always, when my physical state worsens, so does my mental. Last weekend, my goal was to not cry at all. I had spent the past two weekends crying a lot, like many hours. I actually succeeded at this. Even though I felt crappier (man those puns NEVER get old, do they?), I held back the tears that arose once or twice (not exactly healthy either) and did a few productive things.
Today, I went to the doctor, also for the 3829329th time I think. But, everyone goes every two weeks. Riiiight. My doctor still thinks I'm "ok" right now, that I should keep doing what I'm doing. I was expecting a Prednisone prescription, a Colonoscopy appointment, or what happened, which was nothing really changes at all. No, I'm not that bad, I realize that, but I don't feel well either. The only difference is that my meds are upped a little, which would have happened regardless b/c my bone marrow, blood cells, etc. haven't received negative effects from my new drug, azathioprine. I wish I could get used to feeling shitty a lot, and not care about shitting myself and cleaning up the mess, and continuing on merrily, but I just can't. Could you? Another thing that made me happy and also peeved was that, I asked my doctor hypothetically, "Ok, so if I call you in a week to say I'm bleeding and going to the bathroom 30/day again, what then?" We do predinsone again, try again with a higher dose of new drug. If that doesn't work, then some of the more experimental drugs. I had thought I was closer to surgery, i.e., ripping my colon out and making my small intestine into a pooping mechanism, but no. I should be happy with this, this possibility of something "working," but it only means more trying drugs that aren't guaranteed to work. It's depressing, a letdown up to this point, and exhausting.
My 13-yr old cousin became diabetic recently, and it was such a blow. Unfortunately, diabetes runs in our family. My aunt (my cousin's mom), my deceased grandfather, my mom. Not the obesity or poor lifestyle kind, the type that is soooo managable if people didn't feed their kids crappy fast food all the time (I'm generalizing). When she started urinating a lot (one of the first signs), her mom wanted to test her blood, and she said, "If I'm diabetic, I want to kill myself." Her mom hasn't dealt with it all that well sometimes, and having watched my mom almost die from it in the beginning, and struggle with it at times, I would have the same response. I did, and do, have the same response to this disease I have. I can't imagine being 13-yrs old and getting dealt such a blow. She's worried about people not liking her anymore, that she sort of has "cooties," etc. It's times like these that I become more humbled about my own condition, because it drives home the fact that I am not the only sick person out there. It's hard to remember other sick people though when you are sick yourself. It's hard to care about other people's pain when you are in pain yourself all day.
When my mom told me about her, she gave me her hospital number. I hesitated about calling, b/c honestly there's nothing you can say. She's devastated, just as I was. She wants to die, so did/do I. I promised myself I wouldn't ask "how are you?", but I did. It's so natural, but sometimes I find it insulting, especially when the real answer is obvious, but customarily, we say the opposite. "Fine, I'm fine." I hate that question, and I hate even more the answer I have to deliver. A few days later, I crocheted her a little stuffed heart and wrote her a note to mail along with it. In dealing with tough situations, I've stopped (I don't think I ever did this though) spewing out meaningless words like "It'll all be ok", "You're gonna be ok," and "Cheer up." Again, insulting. Being positive is one thing, being stupidly cheerful is another. I wrote her a note basically saying, "I don't know if you know I got sick a few years ago with something different. It is such a blow. Just know that it's ok to cry and be upset, but also remember that so many people love you so much, and they always will, and they're gonna help you as much as they can. I try to remember this too." I sewed a little heart for my mom when she first got sick and could barely move, eat, etc. and I brought it to her hospital bed. When she came home, she put it on her nightstand, and said that sometimes that heart was what kept her going. It meant us kids, her life, everything. She'd hold onto it, and it still sits there today. At a family birthday party a few days after my cousin got out of the hospital, my mom told me she showed everyone the heart, loved it, and carried it with her diabetes stuff.
I wasn't even planning on writing about her, but perhaps that is a positive occurrence, as I moved on to someone else's life, instead of wallowing away in mine. Even though I feel this slight sense of happiness, at her reaction to my note and heart, when it comes down to it, nothing really helps in the end. Not all the love in the world will make you want to keep going if you're in enough pain, if you feel so defeated, depleted. I've learned that all too well in the past year, that although I am surrounded by loving people, a loving boyfriend, and a fading memory of the life I loved, lost, and crave, it's not enough. I can think about being in love with Ian and downing a bottle of pills with gin all in the same minute. I can think of all the children I babysat, taught, watched, held, loved, and the children I have yet to bare, and jumping in front of a bus comes to mind shortly thereafter. It's sick and yet painfully real. So, I think about my cousin, myself, my mom, and so many other people and ponder what the "right" outlook is, what spin should be put on mind-blowing diagnoses, and I can't come up with anything sufficient. Do we go on b/c we know it'll turn out well? That's naive. Do we forge ahead b/c we have faith in some higher power, or modern medicine? That's not a guarantee either. Do we keep living b/c we have to? No, we never "have to." Instead, just as there's always a chance of getting this or that illness in the midst of a good life, the same goes with happiness, satisfaction, fulfillment. There's always a chance of getting that too, in the midst of difficulty.
