This is where it all hangs out
by, April 20th, 2010 at 03:57 AM (698 Views)
This is one place I think I can share with people (even though you're all online, I believe in you! lol) that my real-life friends and family wouldn't easily find. And if they do, they can suck up anything they don't like.
Today I can type, but tomorrow I may not be that lucky. Hopefully I will be, because it is a good indication that I can write, and there are some exams coming up, and a dissection in zoo lab tomorrow. Yet the pain and fucking whatever-it-is may quickly debilitate me again, and so I wanted to spill my guts first.
I don't try to bore you, but I know it's always boring to hear about someone's illness. :) But tonight, I'm sitting here and it's 2:30, and I'm trembling and crying and sitting outside in the garage to hopefully keep the numbness going in my fingers long enough to bitch a bit. Basically it's some sort of arthritis, but no one knows what KIND. They'll say rheumatoid, psoriatic, reactive, blah blah. It doesn't run in my family other than slightly arthritic knees, and I've been on a regimen that would cure many mild cancers--a strong dose of prednisone, weekly injections of methotrexate, infusions every 3 weeks of Remicade. Instead of alleviating anything, or even slowing it down, it's aggressively attacking me. In 3 months, between November and February, I have x-ray documentation of bony destruction. I cannot get help from the medical community and have been told that others suffer happily with arthritis, and that I refuse to accept the fate I am dealt.
Which brings me to the bitch part. See, I don't think it's wrong of me to mourn my life. My life as I know it will die with this condition if indeed it is incurable and not even stoppable--and right now with the pain/swelling coming back, I think it is satan himself, and I sure as hell can't stop him since I've almost lost all faith in God as it is.
I KNOW others suffer worse, and don't deserve it. I read this site daily and innocents are brutally tortured every day--I know that and I have cried and dealt with cracks in my own soul when faced with the evil that man can do. But honestly, in the midst of the pain, i am an animal. I've had a baby. I laid in a hospital bed for 2 days with ruptured intestines, and I've come back from a medically induced coma to what I thought was the worst possible pain ever, but this shit is worse. In the last "spell," the only way I was able to get through the day sane is the slow understanding that as bad as it was, as intolerable as it was, the next day it was going to be worse. I can honestly say that this pain is nothing like anything I've ever experienced, and when combined with the utter helplessness (I lost the ability to walk in the last spells--even when I could overcome the pain, my knee would just give out), it's a horrifying existence.
So now I know what a selfish bitch I am, because I cannot be noble with this. I just can't. I try to get through it with the true sympathy I have for others, but I can't help slipping into this feral state of anger and fear and pain eventually. I hate myself then--there is no other time that I feel more dirty as a human than when I am suffering like that. I can see every flaw I have, and then can see just how selfish I am being because I can't stop crying from the pain until the tears just run out, and so the idea of me being a wife or mother is a faraway daydream, and decent humanity in general is way impossible.
Those are the really bad moments, and I am finding auto-prayers coming through a broken faith that please God, not that bad again, please. In the decent moments, I am sad. I do not feel I am unduly depressed, and feel it is normal to face losing every manifestation of your personality. I have not worked since November and the possibility of getting any job, much less in transcription again, is not going to happen. I am faced with being forced to drop out of school--I am barely now passing a couple classes because I have missed so much this semester. Everything I am is expressed in ways that I will lose if this condition progresses, and if I have to live in fear of the next flare. I feel like one of Pavlov's dogs, trembling and unconsciously crying at the first symptom of slight joint discomfort.
so I think it's a really shitty thing that it seems people are pissed at me for not constantly dwelling on the concepts of fluffy kittens who are farting rainbows, while unicorns traipse around dewy meadows, secure in the multicolor shadows of those rainbow farts. When I go to the doctor and beg for help to walk again, and they tell me that I will have to "make different life choices," I feel it is within my rights and a reasonable human reaction to say, "but isn't there anything else we can try? Why are you so sure it's this or that when you haven't run any tests?"
Of course now that I've kicked and soiled the towers of their God complexes, they're pissed at me. At my last visit, I left feeling as though I had been abused and assaulted. He told me I was "choosing to suffer" over acceptance and went on to tell me of the little old ladies who still smile when they visit the doctor, even with arthritis.
My aunt happened to call one day when I was having a paritcularly bad day--I'd fallen the night before in the living room and took 2 hours to crawl back to the sofa. she suggested Paxil and acted offended when I told her that I didn't need to smile like an idiot, but simply mourn my life.
I also realize this is a shitty thing to complain about, but I keep losing weight. I had been at a comfortable 150 in January--I'm 5'8" and carry weight well. Of course I'd had gastric bypass, and so lose weight easily, but still was stabilized there. Yet I'm now 130. I went from a size 11 to a size 6 in less than one semester--had to actually buy an emergency pair of pants when I almost lost mine standing in the gas station. I had gotten to the point that I was afraid I was seriously dying back in February--I deliriously begged my husband to stay awake in case I stopped breathing and to please make sure that he watched me, because the physicians refused to run any tests. :(
So boo and hiss all you want--I probably deserve some because I DO see that I am blessed in a million ways. It's not that I ever forget them, but I'm feeling lately that it's not okay to be sad or mad, even when there is a reason to be and it's a healthy sad/mad. I'll be okay and am not suicidal. just pissed. Pissed and scared. that's not wrong. I won't say it's wrong and will continue to refuse anyone else saying it's wrong, or denying me that right. I can even give in that it's annoying to hear complaints of ill health when it sounds like it's "just" arthritis. But honestly, I am scared, because it sure as hell doesn't seem or feel right. :(
My mantra lately is, "I'm only 30," like that will somehow chase it away. But when I can't walk, and somehow even worse, when I can hobble/lurch/walk, but so badly and so obviously painfully that the fucking walmart greeter man tries to insist I take a wheelchair, I just keep saying, "I'm only 30," like that does anything at all.
Hands are killing me, really going away now. thank you, cyber-demon-friends and acquaintances for indulging my wussiness.