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.
Monday, December 31, 2012
Saturday, December 29, 2012
How Being a Crash Test Dummy Reminded Me of Questions I Meant to Ask My Rheumy
I'll get back into regular blogging eventually (it's on my list) and the whole New Year's recap/resolutions in my next blog. I'm usually pretty good at remembering everything I want to ask my rheumatologist during my appointments, but since I found out I don't have Fibromyalgia and I don't have Chronic Lyme Disease (I definitely had the disease once, possibly twice, but because my former rheumy used cheap, unreliable tests, odds are, I did not have it 9 times. The 2nd diagnosis is in question because my neurologist tested me for babeciosis--a rare bacterial disease also found in deer ticks that can be transmitted at the same time as Lyme Disease, but Doxycycline does not kill the infection and can lead to a false positive Lyme test). I asked plenty of questions about my medications, vitamins, interactions with foods, the warning labels on my medications (the immunosuppressant carries a TON of scary warnings, including avoiding germs, injury (lmao!), people who've recently received live vaccines, etc.) and what do I need to do to protect myself/any special precautions, best times to take them... Then this past week has me writing a list in my little notebook.
It all started last week when I wanted a good picture of my dog for Christmas. She doesn't do the whole antler/headband thing. Even if I could get a pair on her head, she'd have them ripped off her head and chewed apart before I could get my camera up. With the help of my father, I managed to get a blurry picture of a snowman headband thingie, but they were destroyed in about 45 seconds. So, when I bought her toys and treats for Christmas, I couldn't resist the reindeer costume on clearance. It took a bit of wrestling, quite a few times being zapped by static electricity, but I was able to take a cute picture:
The following day, she carefully set up her runner so it would get tangled around my ankle and I would fall on my paverstone sidewalk--HARD. Yes, she is that smart and that vindictive. I twisted my back, seriously bruised and scraped up my elbow, and jammed my shoulder something fierce. All for that one picture. And ended up in a sling for 4 days. It should've been longer, but the sling was annoying. But I did notice my overall pain went up a bit. I was just recovering from a 3+ week flare my rheumy had to break by a medium/high, three day dose of prednisone 10 days earlier.
The day after Christmas, my nephew came over to spend 3 days. We had about 3" of snow on the ground from a small storm on Christmas Eve, so he wanted to go sleigh riding, except our sleds are MIA. we're good at improvising, and my mom's great at making "death sleds" (re: super fast, should probably wear full safety gear on top of extra layers of clothes not just to keep warm, but for extra padding). Attempt 1 was with the flat lid of a plastic tote, rubbed down with a candle, 2 coats of butcher's wax, and sprayed with Pledge for good measure. I don't need to post the video here. I couldn't get enough footing to push him, tried to kick the tote a few times to get him started, accidentally kicked him the arse (not hard!), burst out laughing, lost MY footing because I was laughing too hard and fell right on my arse. Twice. Only to find out not only did it not work, but there just wasn't enough snow, or the lid wasn't flat enough. So we tried candle wax and Pledge on a flattened cardboard box. That too, was a failure. But while we were trying cardboard, snowstorm #2 was hitting us and the boy wanted to try the big plastic tote--which my mom was waxing with butcher's wax, pledge, candle wax, and something else (I don't remember). 2 hours later it was time to try the tote. It acted more of a plow. And I learned how to fly. While we tried to at least lay down a decent sled track, I had to keep pushing him down the hill because I couldn't get my footing. As soon as the tote (with all 100lbs of him in it) stopped dead, I ended up doing a high flying airborne somersault, once again landing on my back in the snow. (Thankfully, there's no video of THAT!). You'd of thought I learned my lesson that day. Nope!
Day 2 brought out the hunt for a decent sled. We HAD to have something! There was now 8"+ on the ground and it was perfect skiing/sledding snow! Of course my brother never adjusted my skis after the last time he borrowed them, so my boots don't lock in the bindings, or I would have let him use those (and I would have most likely tried them for the first time in at least 11 years, just because) when we spotted it--an archaic plastic sled disc. It had a bit of a crack, a little warped, but it was a sled. 3 coats of butcher's wax, 3 coats of acryllic floor wax, and a quick coat of Pledge for good measure, off we went. It didn't quite work, and I ended up showing him how to do a running "Superman Sled Dive" to gain more speed. As if I didn't learn enough... I landed halfway down the hill, winded (or out of breath, considering I'm horribly out of shape, but I'm not sure which), lying there like a camo'd slug, trying desperately to catch my breath, knowing I had to stand up because it wasn't like I could roll UP the hill, bruised in places I didn't know COULD bruised, and aching in places I forgot existed. What the hell was I thinking (Besides it was fun)? But I learned I could sled surf! When we were out Friday, we did find a brand new sled disc, waxed it up perfectly for him and sent him out. I didn't even put my boots on. After 2 hours, he crashed it into a tree and broke it. But hey, he did take this picture of me because he thought it was just the funniest thing ever: Yep, that's me in about 6 layers, laying there as a snow slug.
But I did think of something to ask my rheumy when I see her next as I'm sitting here with heating pads, pain medication, and fine as long as I don't inhale too deeply or make any sudden movements (or try to move too much at all)--if overdoing it or injury can trigger a flare. Obviously it's painful. I have the aches, pains, and bruises to prove it. But my joints are swollen and it feels like I'm on the edge of another flare similar to the one I just barely crawled out of. And I do think that's a very good question to ask...
It all started last week when I wanted a good picture of my dog for Christmas. She doesn't do the whole antler/headband thing. Even if I could get a pair on her head, she'd have them ripped off her head and chewed apart before I could get my camera up. With the help of my father, I managed to get a blurry picture of a snowman headband thingie, but they were destroyed in about 45 seconds. So, when I bought her toys and treats for Christmas, I couldn't resist the reindeer costume on clearance. It took a bit of wrestling, quite a few times being zapped by static electricity, but I was able to take a cute picture:
The following day, she carefully set up her runner so it would get tangled around my ankle and I would fall on my paverstone sidewalk--HARD. Yes, she is that smart and that vindictive. I twisted my back, seriously bruised and scraped up my elbow, and jammed my shoulder something fierce. All for that one picture. And ended up in a sling for 4 days. It should've been longer, but the sling was annoying. But I did notice my overall pain went up a bit. I was just recovering from a 3+ week flare my rheumy had to break by a medium/high, three day dose of prednisone 10 days earlier.
The day after Christmas, my nephew came over to spend 3 days. We had about 3" of snow on the ground from a small storm on Christmas Eve, so he wanted to go sleigh riding, except our sleds are MIA. we're good at improvising, and my mom's great at making "death sleds" (re: super fast, should probably wear full safety gear on top of extra layers of clothes not just to keep warm, but for extra padding). Attempt 1 was with the flat lid of a plastic tote, rubbed down with a candle, 2 coats of butcher's wax, and sprayed with Pledge for good measure. I don't need to post the video here. I couldn't get enough footing to push him, tried to kick the tote a few times to get him started, accidentally kicked him the arse (not hard!), burst out laughing, lost MY footing because I was laughing too hard and fell right on my arse. Twice. Only to find out not only did it not work, but there just wasn't enough snow, or the lid wasn't flat enough. So we tried candle wax and Pledge on a flattened cardboard box. That too, was a failure. But while we were trying cardboard, snowstorm #2 was hitting us and the boy wanted to try the big plastic tote--which my mom was waxing with butcher's wax, pledge, candle wax, and something else (I don't remember). 2 hours later it was time to try the tote. It acted more of a plow. And I learned how to fly. While we tried to at least lay down a decent sled track, I had to keep pushing him down the hill because I couldn't get my footing. As soon as the tote (with all 100lbs of him in it) stopped dead, I ended up doing a high flying airborne somersault, once again landing on my back in the snow. (Thankfully, there's no video of THAT!). You'd of thought I learned my lesson that day. Nope!
Day 2 brought out the hunt for a decent sled. We HAD to have something! There was now 8"+ on the ground and it was perfect skiing/sledding snow! Of course my brother never adjusted my skis after the last time he borrowed them, so my boots don't lock in the bindings, or I would have let him use those (and I would have most likely tried them for the first time in at least 11 years, just because) when we spotted it--an archaic plastic sled disc. It had a bit of a crack, a little warped, but it was a sled. 3 coats of butcher's wax, 3 coats of acryllic floor wax, and a quick coat of Pledge for good measure, off we went. It didn't quite work, and I ended up showing him how to do a running "Superman Sled Dive" to gain more speed. As if I didn't learn enough... I landed halfway down the hill, winded (or out of breath, considering I'm horribly out of shape, but I'm not sure which), lying there like a camo'd slug, trying desperately to catch my breath, knowing I had to stand up because it wasn't like I could roll UP the hill, bruised in places I didn't know COULD bruised, and aching in places I forgot existed. What the hell was I thinking (Besides it was fun)? But I learned I could sled surf! When we were out Friday, we did find a brand new sled disc, waxed it up perfectly for him and sent him out. I didn't even put my boots on. After 2 hours, he crashed it into a tree and broke it. But hey, he did take this picture of me because he thought it was just the funniest thing ever: Yep, that's me in about 6 layers, laying there as a snow slug.
But I did think of something to ask my rheumy when I see her next as I'm sitting here with heating pads, pain medication, and fine as long as I don't inhale too deeply or make any sudden movements (or try to move too much at all)--if overdoing it or injury can trigger a flare. Obviously it's painful. I have the aches, pains, and bruises to prove it. But my joints are swollen and it feels like I'm on the edge of another flare similar to the one I just barely crawled out of. And I do think that's a very good question to ask...
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