This year is finally ending--in about an hour and a half! I didn't think a year could feel both endless and short at the same time. So now it's time to reflect on the past 12 months and shut the door. So I have no idea how long this might come out. I'll try to keep it kinda short-ish, but sorry if it's not.
It's been just over a year since I've spoken to my brother or seen his daughters after our last argument that he ended with a comment (paraphrased) about if my father had a kid like me, he'd want to die. The new year started with my father going in for high risk back to back heart surgeries and set the tone for the rest of the year. My health went to hell in a hand basket, forcing a medical leave from college (which is now an official withdrawal because leaves of any kind are allowed for 2 semesters only--no exceptions). Seven months of poking, prodding, labs, tests, and reviews of 15 years of tests I learned that I had been misdiagnosed for the past decade. I never had Fibromyalgia, Chronic Fatigue Syndrome (which was a diagnosis that came and went, depending on the year), nor did I have Chronic Lyme Disease--I have an autoimmune disease. Of course it doesn't have a "real" name. "Unspecified Inflammatory Mixed Tissue Disease." Doctorspeak for "science doesn't know what to call it yet." But it's an orphan of Lupus and a mix of a few others. At first, I was overjoyed and relieved that I wasn't crazy (my symptoms weren't biopsychosomatic or something), then angry at my original primary dr and previous specialist for missing the diagnosis. My primary blew me off as a hypochondriac, sent me to the specialist to prove me wrong, that there was nothing wrong with me, fired me as his patient after the specialist diagnosed me, then CHANGED my medical records to cover his arse. My specialist stopped listening to me/was afraid to admit he was wrong after several years. But because there were treatments to get my illness under control, I took on a fighting attitude until the gravity of this hit me. The medications I'll be on for the rest of my life, I can't donate blood, I can't donate my kidney to my mother (which I'm a match for), I'm so cold intolerant, I wear long sleeves in 80 degree weather (which is probably a good thing, considering I can't be out in the sun at all, even with strong sunscreen and long sleeves to protect my skin from burning in less than 5 minutes), it has no cure, it can be fatal, and if it's not, complications from it can be. And it could have been brought under control a decade ago.
Then there's my mother and her kidney failure/dialysis. At least she's no longer on blood pressure medication. In the course of 5 years since her kidneys began to fail until now (end stage renal failure), she has gone from 15 prescriptions and 58 pills a day plus vitamins to one prescription--a phosphorous binder all dialysis patients have to take after every meal. Now to finish getting her healthy and wait for a transplant.
But I did get to "meet" some amazing people this year. Chris, Caitlin, and Nadine. I met Chris first on an invisible illness site. We hit it off instantly. Like me, she seems to live in an insane asylum between her family and her pets (although I don't have ducks or chickens--I just have parakeets and a smartass, backtalking, revenge seeking dog). Through her I met Caitlin and Nadine. We all live with the good, bad, and ugly of "invisible" illnesses. They're invisible because we look normal on the outside (lmao!). It was Chris who opened my eyes about how bitter I was becoming. She took away something that was important to me after an argument with someone, but it took awhile to understand why and I'm better for it (like most lessons learned from friends). I don't know where I would be if I hadn't met the 3 of them this year.
I also reconnected with some old friends from what seemed like a lifetime ago. It's funny how with true friendships years and years can pass, but once the basic "hey, how's it going?" and catching up is done, all the years melt away and distances don't matter. Especially this past year. We've all gone through hell. But all of us have laughed, cried, screamed, cursed, and laughed some more while crying together--both old and new friends. And that's something that can't be put into words.
I'm no longer bitter, but part of me is still a little angry at those doctors for taking so much time away from me. I lost almost all of my 20s--many chances and choices were taken and made for me because of incompetence and ego and that's something that's slowly fading. Things like that take time (and maybe a few more "crash test dummy" days). I just know that I'm glad I finally have real answers behind why I'm sick, beyond grateful and thankful for the amazing friends I've made this year and those who have stood by my side, and I can't wait until 2013 starts. Lucky number 13.
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