The first time I DANCED in two years

The first time I DANCED in two years
Dancing is pretty tiring, but I'm still gonna get dressed up and try

Wednesday, January 27, 2010


I'm pretty ill. I've been bedridden for two years with full blown Lyme disease, complicated by the genetic disorders Ehlers Danlos type three, a collagen disorder that makes my skin, veins, and ligaments and mucous membranes thin, delicate and stretchy- causing P.O.T.S. (posterial othrostatic tachachardia syndrome) which is where my blood pressure drops dangerously low even when I would go to sit because of the stretchy-ness of my veins and their weakened state, pulling oxygen away from my brain and lungs. It at least makes my skin as soft as rose petals, though not quite as strong. Its very clear too. It scars magnificently, like a "zebra".
Thats what they call us, people with Ehlers Danlos, Zebras. For two reasons: our fancy scars all up and down, and because usually things are horses. Zebras are rare. And hard as hell to diagnose because they act like horses. But its usually just a horse, is what one doctor told me before this all began. Which is why the diagnosis of "Zebra", and Ehlers Danlos being THE Zebra one of my zebras was so funny. Oh Good God I wonder if anyone followed that.
I also have the disorder Porphyria, or Vampire's Syndrome a really rare disease that is intertwined somehow with E.D.S, though I don't really know the specifics of how. It makes it impossible for me to go into sunlight; I've experienced second degree burns and nerve damage through windows. When I go outside in daylight, I wrap up in pashminas, long sleeves and carry a parasol. We're in the process of getting special glass liners for our windows. I really just converted to nocturnal-ness though. However white light is almost as bad as the sun. Not as fast burning because its weaker, but it can burn me badly too. It can be so painful, and send me into a porph attack- which can be deadly. The only "cure" for Porphyria is glucose, severe porphs get glucose shots. Not too long from now I get to see a specialist, I've been fighting for that for a long time and I'm happy about that. See alot of medicines are very dangerous to people with porphyria, even tylenol, and its important to have everything documented properly, but I dont know what KIND of porph I am yet.. veriegate we suspect. We've ruled things out, but to do a medical ID bracelet properly I need that information. The lab we go to with our insurance screwed the tests up sooo badly when we tried to do it, and its a very painful test for me because I have to induce a severe attack. Last time I ate meat. Anything that had a heart makes the disease stronger.
Side effects off the disease are seizures- Which I also get because of the severity of my Lyme disease.. and I actually dont know which one causes them more, since I've had little whimpy ones for years and years and now they are sort of rabid-animal-paralyzed seizures. With reallyy bad headaches after. Severe hallucinations are another side effect. I've done a lot of very bad bodily harm during these hallucinations... attempted surgery to remove an imaginary malignant tumor, sliced and dug the top of my head open to release a demon, tattooed myself- then when I was no longer hallucinating I decided I didn't want a tattoo and gouged it out... Lesser ones I've listened to radios that have been off, and watched televisions that were disconnected. I've read books for hours when all that was in my lap was blankets. Severe stomach pain is another symptom. So are comatose episodes.... My brother gets a kick out of those, when I try to get out of it and it feels like I'm miles away trapped in a deep hole... cosy while I'm comfy there, but when I want to LIVE it can take sometimes twelve hours to get out, fighting like when I was back in TaeKwonDo and healthy to get to the surface. He enjoys helping me out of them, which is really great... Somehow entertaining for him, and I get to live again. My heart slows down to undetectable in those times. Yes, due to both Lyme and Porphryia I have an arrythmia, but this is just my heart going almost still its so slow, and myself going cold. Its so calming. Doctors have been unable to find my heartbeat in times like this before, when it slows. My breathing slows down too, so that it seems like I'm not though I am. This is how the whole "Living Dead" myth got started about Vampires.
I do have pointy teeth. I just... always have, my baby teeth were too, and so are my adult teeth, moreso, though now somewhat worn and a little chipped on the longest two and on front of the front teeth haha. I cant wear silver. Neither can my aunt, and to my knowledge she doesnt have Porphryia at ALL, though I believe I got it from that side of the family (my father's). Both I and her daughter, who has a related disease to Ehlers Danlos (which is related to Porphyria SOMEhow) have eyes so dialated we see better in the dark. My hearing- though this is due to the Lyme, is so amplified that it allows me to hear everything that goes on inside this house, though I really dont try, and try not to honestly, and my family sneaks around to get private conversations which saddens me. But it is cool to be the one they turn to to find the leak in the air mattress (which was smaller than the size of the dot over this "i", but let out a nice high whistle as it streamed out all the air.)
Thats what I am. But not who I am. I'm an artist, and I haven't let this disease stop my entrepreneurship. I'm working on my own card company, and have been for the entire duration of my illness. I sell my art freelance too, and prints of things I do. I'm a proud mother to my cat (yes CAT) Twiggy, whose name I'll explain next time in a blog dedicated entirely to her honor. I have few friends, and I value those I do have. I keep losing people as soon as they discover the EXTENT of my sickness, and so I admit to being jaded. My world is small, but I make it as happy and beautiful as possible and I think my life is good, despite the whole mentally and physically disabled thingy. I did Taekwondo for a long time and Lovedd it, though I've realized I'm never going to be able to go back. It was a huge part of my life during junior high and high school. I.... am lonely, but I have a good support system. Also I'm TIRED!
@>--->------ Jenny

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