18 out of 18 touch points tested positive. Touching the one in my left side above my hip brought me to tears. Several others made me jump so hard that I ripped my cotton gown.
For the rest of my goddamn life, I am going to have FMS.
Every day for the rest of my life I have to take more goddamn pills. An anti-psychotic to keep from becoming delusional. A mood stabilizer to keep the frequent, rapid and violence mood swings in check. An anti-inflammatory to keep the swelling down. A pain killer. A sedative to help me reach stage four sleep. Some kind of weird nose spray thing used for osteoporosis and FMS to alleviate the pain in the neck and shoulders. Some other thing that starts with an \’n\’ to keep my blood from clotting. A strict vitamin regimine. Popaholic.
From here on out I have to modify my life style. Swimming with an aquatics therapist to specifically target pain, swimming with an arthritis support group, and swimming on my own. Massage therapy. Physical therapy.
If you like massage therapy is fun, there is nothing wrong with you. My tendons and muscles and nerves and everything have fused themselves together, and what the massage therapists do with me is massage everything apart. You try having your insides ripped apart slowly and on purpose and see how much fun you fucking have.
On top of it all, I still have carpal tunnel syndrome and tendonitis. Maybe arthritis. Blood tests have been ordered to make sure there is nothing else going on, as well as another nerve damage test – something else that fucking hurts. They hook little pads up to your skin and in the little pads are little needles. Great, you think, sounds like a tattoo. Yeah, well then they send electricity down the little needles, zapping all your nerves, one by one.
The deteriorating cartiladge in my kneecaps means there is a very high chance that I have osteoarthritis. I was looking at hand and knee models of joints that have OA, and it was not pretty. Stooped, crippled, deformed.
The rheumotologist starts talking to me about how I am going to pay for everything, and I say I am trying to get on SSI but it will take a year. He says that is no good, that I need treatment now, and what about health insurance. I told him that mine will no longer cover me because I am no longer in school. He says why not go back to school then. Because I do not have any money, cannot qualify for a loan due to filing bankruptcy and do not know when I will be able to work again, and am not eligible for FAFSA money. So he says, do you have a boyfriend? \”Uhhh, yeah.\” \”Are things heavy with him?\” \”What do you mean, heavy?\” \”Could you get married?\” \”Um, NO. I am way too young, and I am not going to get married.\” \”Well you need someone to support you.\” (I later relayed this to my aunt, who told me I should tell him to go screw himself, because with an attitude like that no self-respecting woman would want to screw him. I then told Mark and he said that yeah, maybe I should get married, but not to him. [pauses] I am tired of people thinking that a man is going to solve my problems. I do not want to get married.]
The rheumatologist also wants to put me back on Effexor to keep me from getting so down, and for me to go on a mood stabilizer. These would also be for the rest of my life. My psychiatrist agrees on the mood stabilizer, but not necessarily the Effexor as SSRIs are not good for people with Bi-Polar.
I have to research what natural alternatives there are for FMS, because I really do not want to be on all these fucking medications where they do not know the long term effects. Risperdal and Zyprexa are bad enough, but now everyting else… christ.
I was also told I was hyperkinetic. I have always been very flexible, and the rheumatologist bent my thumbs back to my arm today (I have always been able to do that, and it does not hurt outside of my CTS), and used the word and then asked me if I could touch my tongue to my nose for him. Unfortunately, there is nothing wrong with my mouth. Maybe if there was I would be able to shut up.
Instead of shutting up, I went to my grandparents house immediately after my appointment. It was rush hour and they live right around the corner, and I did not feel like sitting in traffic for forty-five minutes. I get in the door and burst into tears. The story comes out, and what it boils down to is thus:
-My aunt is coming with me to the financial aid office at UMUC. She is going to pay for me to go to school there during autumn semester, maybe even summer so that my health insurance will not cancel me. She is going to help me find support groups and a lawyer, too, as I need a lawyer for the SSI.
-My grandfather is going to liquidate his bonds to help me pay my medical bills until the SSI kicks in.
Neither of them would take no for an answer.
I guess when it boils down to it, I can count on my body to fuck up, my family to bail me out, and some of my friends to be assholes. Still trying to figure out the other friends.
Later tonight I am starting plan one of the \”help Cassandra pay her medical and legal bills drive\”. This is going to involve begging people to spread the word that I will do site design and maintenance for very, very cheap. I need to start getting new contracts. I need to get myself out of this.
The worst/best part of today was when I told my grandfather about the diagnosis and explained to him what it was, he started to cry, held me in his arms and said \”you\’re my favorite, and always have been. Did you know I have a box from you grandkids, drawings you kids used to do for me, and they are almost all yours? I kept yours. We can get you out of this. I am going to help. But you, Cass, you are a fighter and always have been since you were a baby. You get through everything, and you are going to get through this. It won\’t beat you down; you are the strongest person I have ever known.\”
My 88 year old grandfather who was in service in WWII and has seen so many people in his life do so many things, and I am the strongest he has ever known. That fucking breaks my heart, breaks it in two. I do not feel strong – I feel like a coward, and weak. But if my grandfather believes in me… if he believes in me, then I can do it.
And the first step is to finish my portfolio.