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

Friday, January 29, 2010


Thats a real good song, by Smile Empty Soul. One of my favorites, though currently Owl City's "Fireflies" is playing on repeat in my head... Fantastic accoustics up there. I wish my family would make some major household adjustments.
First of all to the lights. Yellow lights all through the house. The lights are killing me, burning me, restricting me to my room or -when I do venture out- having to be in the dark because no such lights have been installed. My family cant stand the dark... Except increasingly for my dad, who I suspect has the gene for the disease and now has a medically induced version of it, he has been exhibiting a lot of the same symtoms for a while. I tell him to stay out of the sun, cover up, but he ignores my advice. "Yeah?" and "mmh okay I'll try" when I talk to him, "you may be right" but he never does anything except watch himself suffer.
Well tomorrow... Correction TODAY, only its early hah, and I havent slept yet, I'm seeing a porphyria doctor in NYC. Then we can get the proper lining for the windows when he tells us what rays are bad, apparently they make very specific and picky linings.
Tonight earlier (ending at twelve thirty AM anyway) there was an "Law and Order SVU episode involving a man with porphyria. he was the rapist in this case (and got castrated and killed for it...) but I just thought it was so cool that a porph was on tv. I've never known another real one. The police had him under lights in the interrogation room and he was screaming until the doctor arrived and told them what he had and what was wrong, that he wasnt 'crazy' he was in pain. Well sort of crazy for other reasons...
I figured out what disease I had-Porphyria I mean- via television. I was watching "Castle" when a man with porphyria was on. They based the whole show around him and I was freaking out at the end, going "Thats me, thats me, thats me too!" The tea or purple colored urine, the hallucinations that Lyme doctors couldnt explain because they were too strong for the weak hallucinations Lyme causes, my skins reaction to white light or the sun's rays, so much more. Mom laughed at me as I grabbed my laptop, eagerly googling it.
She kept chuckling, and telling me I was being foolish, until I called her over to look at pictures that looked like they could be of my body, of my unusual blisters, etc. Reading things she had thought just.. weird but.. me, and always blindly accepted my whole life the peices began to fall into place for her as well. My father didnt want to believe it. It was the hype, I enjoyed the fact I could call myself vampire that was all.
That was a real slap in the face. I was just excited to know what was wrong with me! Hallucinations that had made me think I was nuts all of high school, and I thought the sun was always so prickly uncomfortable, never understanding those who enjoyed bathing in it, until it began severely hurting me and I knew something was wrong but never before that what. The almost now two decades of severe stomach pain, crippling during gym outside, which now I know why, since I never could understand it before, being that I would do Taekwondo or sports inside and be painless (depending on the lighting)... such a difference. It was the sunlight. As a kid I could push through. As a teen I had to go to the nurse or just let myself collapse. Sometimes Id wait until all the girls left the locker room and lay down on a bench, and if someone came up shoot up and pretend to tie a shoe. Somehow laying down helped me, I'm sure because the EDS was aggrivated when the porphyria was, being that theyre connected somehow and laying when I am in trouble due to EDS always immediately yeilds results. (are you kidding, this spell check is underlining yeilds, it doesnt have that in its dictionary? I hope I didnt get it wrong.)
I sort of think its essential to my recovery my parents buy new bulbs and change them. I know we will need more lights, because neither of my parents see well and I'm suggesting darkening the house, but I live here too, and for an example, I was sleeping nude on the basement couch, with boxes all over the windows to block sunlight (except for a crack I'll admit that did get the bottom of a foot that was hanging over the couch) and I woke up burnt head to toe, front and back. It was utterly miserable, and I dont want to experience it again soon. I suggested keeping the white lights but getting sconces to sheild me from the light. sconces placed artfully all over the house could add alot of light and could really be a great solution I think! The yellow light goes with the peach paint daddy bought for the hall and living room, and I dont think our kitchen, a beige array, would look bad bathed in yellow. The basement is blue, so yellow lights could make it green, which is my favorite color- though colors arent what I'm doing this because of or for (though God knows I would repaint that basement in a heartbeat!)
I feel like I have to bundle up and head out to go to the bathroom if I dont want to risk getting burnt now,  though I'm kind of ashamed (though clearly not too much or I wouldnt write this) to say I am too darn lazy and prideful to do so in my own home. I risk it, dart back as quick as I can, and then I complain at my parents. Truth being though, if I wanted I could go order the bulbs off the internet with my own checkbook, and then wrap up like a shi-ite woman and install them myself.
I envy their religious garb. Ive come close to ordering it many times, but I'm so afraid of insulting someone by accident! I need to ask a very religious Muslim person if they think it would be offensive or not if I wore their garb. I'm Christian..and Jewish.. I preffer to say Jewish though I believe in Jesus, but Jewish headcoverings dont really do enough in the way of  blocking the sun. Snoods and tieschels dont cover the front of the face, and Shabbat veils are fairly see-through (most of them) though there is Nooo way I would wear that out on a daily basis. After all, your Shabbat garb is suppost to be respectful, more dressy than your everyday wear which is what the veil would become if I wore it every time I wanted to go outside in the light. If I'm correct the Islamic woman wears her Hijab everytime she goes outside, not just a small headcovering, so I wouldnt be disrespecting my Shabbat, nor would I be disrepecting anything through Islam, though like I said I must find a devout Muslim to check that all out so as not to insult. We really are a politically correct country, are we not?
I have been bad about keeping my Shabbat, I will admit. It is something I also am not proud of, though I feel like admitting it holds me accountable to rectifying it. Tonight is Shabbat, and I plan on sneaking two candles in my purse in case we are not home in time. I have those lovely battery powered ones, but they are so cumbersome since I have the thick big ones (not battery powered Shabbat candles) so I dont know if I wont take some real candles and some matches justt in case. Lord knows my purse is huge enough, and my current Shabbat candles are worn down fairly small, small enough to hide. A nice shawl tucked away for prayer to change into, and I'm set.
I do feel bad about not having spent more time with God lately. He has blessed me so much. I dont know how ANY one could say he doesnt exsist, looking at the current crisis in Haiti- turned miracle as weeks later people are being pulled out ALIVE! I think the news said it was a stunning amount that nature couldnt account for. I've heard it called a miracle over and over again. They pulled a Hundred and Nine year old woman out, healthy and unharmed! And same with a 14 year old girl TODAY, weeks after the tragedy, though she was dehydrated and hungry. Along with many others today. It.. Makes me smile, at how every time Satan does something so Wicked, God turns it around and makes it so Good.. using this opportunity to turn thousands of hearts him as they realize the impossibilty of these people's surviving on their own, and how loving he can be. Look at the love demonstrated in all the people of the world, as countless countries and religions pulled together to help the Haitian people! Like my cousin said the other day when her neice was born, oh "God is good".
@>--->------ Jenny
:) that is a digress I very much enjoyed, as now I will sleep on a positive note. Update you tomorrow on what the doctor said! Goodnight lovs.

No comments: