Tomorrow night I go back into the sleep clinic for the sleep test again. My boss told me today that \”only you could fail a sleep test. You know how fucked up you are, right?\”
I found out that my closest friend was speaking with a mutual friend of ours about who had done the craziest shit, between myself and she, and the mutual friend finally responded something in the vein of \”Why don\’t you and Cassandra just go out crazy each other?\” That hurt. If my throat didn\’t hurt as well, I\’d call you and call you on that comment, dude.
I\’m not having a good day.
Do people really think I\’m still crazy, still fucked up, still problematic? I haven\’t done any fucked up shit that the average 22 year old wouldn\’t have done in a long, long time. I think I\’ve been pretty under control, pretty not fucked up. I\’m sorry that my brain chemicals don\’t function quite right and that I\’m on a shitload of medicine and that without it I alternate between insomnia and narcolpesy, mania and depression, pain and sweet bliss. But I stay on my meds now. I sleep when my body lets me. I haven\’t gone on an alcohol binge in about six months. I\’ve lost more weight. I keep thinking I\’m getting better, but all around me, that idea isn\’t reinforced.
Monday night my knee locked up again. Fortunately I had an appointment with my new orthopedist yesterday, so I went in, knee swollen. He walked in while looking at my file, looked up at me and did a double take. \”How old are you again?\” \”22\” \”And how did someone so young develop arthritis?\” Well, you\’re a doctor, you\’ve got my files there, why don\’t you tell me? So I had to start in again with the family history, my history, and then my knee exam. \”Does it hurt here? Where does it hurt when I touch there?\” He marked my knee up with ink in all the painful places leaving me looking like a toddler gone mad with a Sharpie.
He then sprayed my knee with ether, which was an amazingly interesting experience — burning and numbing much faster than the Biofreeze that I use. After that he brought out an incredibly long needle and injected me with a novocaine derivative. It was truly incredible, watching the liquid form a golf ball sized lump at the top of my knee and watching while he rotated the needle from side to side without me being able to feel it in me. He then massaged the numbing agent through out my knee and pressed on it again, tested its strength, had me squat. For the first time in years I was able to squat without the physical sensation of being very aware of my brittle knee. I felt the right, but not the left. It was incredible. It made me want to turn cartwheels again, something I rarely allow myself to do because of the damage it does to my body.
Due to most of the pain being alleviated by the injection, he said that my pain was \”external,\” meaning my muscles, joints, ligaments, and cartilage (or lack thereof), rather than severe sciatic nerve damage, which he had feared because I also have severe pain in my left periformis (the area deep in your ass at your pelvic bone), and when it hurts badly enough there, it effects my knee as well as my ankle. Still, I\’m having a new MRI set run on my knee, and then nerve conductor tests just to make sure. I\’ve had the nerve tests in my arms before, and they are fucking painful. Little needles stuck up and down your nerves zapping electricity into them in spasms; holy fuck. Supposedly, if you don\’t have nerve damage, it\’s not meant to hurt, but my results said I had no nerve damage in my arms and the test still hurt like hell. Go figure. My body is fucked up.
Fucked up and pissed off. It hates this cold. I still have not recovered from my bronchitis and I spend most of my time sleeping. I try to get up and go out and manage to quickly exhaust myself. It\’s embarrassing. My mom says I\’ve been like this when recovering from illness since adolescence, ie, since I first became ill. I vaguely recall it being like that, but then, I just recall pretty much feeling run down all the time, so it\’s hard to say. Will, on the other hand, doesn\’t quite get it. He doesn\’t understand why all I want to do is come home and sleep. He keeps asking me if I\’m hurting: I\’m not, I tell him. I\’m just so tired down into my bones that I feel so heavy that I can barely move. He simply cannot comprehend that. Now, instead of struggling to keep him from dragging me to the ER, I\’m struggling to keep him from dragging me out to bars. Right now, both seem like pretty damn shitty ideas to me.
My body hates this cold. The wind chill is about zero. As when I was in Pittsburgh last month, I haven\’t felt my hands or feet since it got cold. I\’ve been taking my calcium blockers and wearing lots of layers like a good girl, but so far, diddly squat. I just want this to end. I want to stop living six months out of the year in a hole, trying to hibernate, trying to stay warm because whenever I get cold I feel like my extremities are going to fall off and that my bones are going to snap and my lungs are going to collapse. I need to move somewhere warm, but I haven\’t found a place yet. I may never find a place. I\’m legally tied here, stuck here, trapped more so than I\’ve ever been, and it\’s pathetic. I want to just walk out.
It seems silly to me, because I used to want to leave here because I was miserable. I\’m not miserable here anymore. I have lots of friends, lots to do, lots to keep me busy, kind of a place to live, a semi-job, health care, a wonderful boyfriend. But for once that doesn\’t seem enough to me. Now I\’m starting to feel like I\’d kiss all that goodbye just to have my body feel healthier all year round. In the summer, I feel so wonderful that I\’m out dancing every other night, I can hold down a job, I get lots done and I feel great. Once it starts getting cold, all goes to absolute hell. But what can I do?
I got into a huge fight with my father tonight about money and how his house makes me ill and that old story again. He knows I\’m having financial problems so he says, come live here, and after having sat there for two hours he sees me sniffling and coughing and sneezing from my allergies to all that infests their house, and he doesn\’t understand how I cannot live there. Then finally he says, okay, so you can\’t live here. What does it matter? You moved in with your boyfriend. And then the fight escalates. How do you explain to a man who married his high school sweetheart that after dating someone for only six months you don\’t just \”move in\” with them? How it was supposed to be temporary because my parents kept promising to get their act together, but still have not, and so a kind offer was made by my lover of then short term to stay with him for \”a while.\” Several months later, and here we are, cohabitating, and I\’m paying rent, and we\’re getting on each other\’s nerves because it was too soon and this place is too small. My father doesn\’t understand how lucky this has been to not already have exploded and how lucky Will and I are that we haven\’t broken up yet. How lucky I am that I\’m not homeless and that we are still in love. How amazing it is that this has worked out. My father is completely clueless as to the stress that forced cohabitation into a 500 sq. ft. studio apartment after less than a year together can cause a couple, particularly when prior to the cohabitation both members of that couple were used to being loners.
So my dad and I argued, and I left and got into another car accident because my glasses prescription which I got in June is already too weak and I cannot see diddlysquat, especially at night, especially at a distance. Fortunately, it was only a slight rearending into someone\’s bumper, and they let it go without asking for my insurance. But I know I shouldn\’t be driving. I know I\’m a danger to the road, to myself, to others. I cannot see. I have really poor depth perception, and really slow reflexes. But my job requires a car, and my doctors are all far from public transportation. Christ.
I really, really want to go to social services later this week and show them pictures of where I used to live in my parents house — show them how they ripped out the entire ceiling and interior wall between two rooms. Show them the dust and plaster and boards that have been sitting piled up against my belongings for months on end without dust covers. Show them the mold that entirely covers the inside of the exterior wall. Show them that I cannot possibly live there, and with rent in Montgomery County being in the top percentile in the country, where the hell am I supposed to go? And then watch as they try and put me in an emergency shelter, because they are all full. And then see what they do. Then see. Wait and see. Wait and see. All I ever do is wait and see.
I am so angry, all the time, angry and frustrated. But a lot of time, it\’s anger and frustration that is on the verge of giving up and in and saying, I concur, there is no way to beat the system, there is nothing the system can do for me, it\’s no one\’s fault, and I am just stuck with this for life and have to try and make the most of it. But I don\’t want to settle. I don\’t want this to be my life. Even with the money from modeling, porn, the photography and the graphic design, plus my disability check, I\’m still not making anywhere near enough to get by. I\’m still making less than poverty level for this area, and I\’m worn to the core. If I leave this area, I lose my financial benefits and healthcare for a year. The system is so fucked up, and I don\’t know how to get around it or change it. Some days I get so desperate I feel like I should write a letter to Oprah. \”Hey Oprah, make my wish come true!\” But what my wish would be that anyone could truly grant, other than giving me a few million in tax free income to live off of the rest of my life, I have no idea.