I had a rough day today. I knew it probably wouldn’t be a good day. Yesterday was the best day ever. Dancing with Russell, good food, 4 hours of chatting with a friend I haven’t seen since Junior year in high school. I laughed so hard I couldn’t breathe and went to sleep happy.
Today reality set in. My life is set to change dramatically tomorrow. It is my last day at Scripps and I’m seeing a new neurologist. It’s a lot to take in. I’m scared. Yesterday I was on top of the world, dreaming. But today it was real. I slept most of the day and didn’t get any work done until after 10pm. I fought with my mom over laundry and walked to 7-11 to get the ramen I was craving. The ramen tasted good but the walking took everything I had and required a 4 hour nap. The music in my head won’t stop and my side hurts, again. And I can’t email the Compass Card people because I want to kill them.
Big trigger today I wasn’t expecting. I got an email from my cousin about our grandmother and how she believes there was never HD in our family. She asked why I was so sheltered and didn’t know any of the family, said it was my family too. I was so upset. I stopped to breathe and to cry, and I sent her an email back. It’s not my family. I was flooded with memories I don’t want to remember…
You know, sometimes I just want to scream at my mother, “GET THE FUCK OUT OF MY LIFE!” (sigh) It would not be in my best interest but it is SO stressful living with her. She is crazy. She is great but she’s not all there and she pisses me off. Communicating with her is like playing telephone, only her brain is the 50 people between us. (sigh) Half the time it’s not worth even trying.
So tomorrow, after I make it through Scripps I’m seeing a new neurologist. I don’t want to. I don’t want to know what’s wrong with me. I just want it to go away. I can’t handle something else. Yesterday I was dreaming. Tonight I want out.
I know how it goes with new doctors. It’s like trying to sell a 3 hole punch to a homeless man for $10,000. I have a short amount of time to convey all the shit going on with me and to try to convince him that it’s NOT all in my head. My body is not shutting down psychosomatically. It’s not a side-effect of my medication. I’m not toxic on my lithium. Something is wrong.
Tomorrow I’ll be asking him to test me for Spinocerebellar Ataxia 17 (aka Huntington’s Disease Like 4) and MS. Possibilities I believe less are Fibromyalgia and Chronic Fatigue. They don’t explain a lot of my symptoms. I put together spreadsheets of symptoms in categories – easy to read information. I doubt that he’ll read it but I’ll take it anyway. I am not optimistic. Doctors rarely believe me. It’s frustrating. I’m an intelligent person, dammit. Look beyond the psychiatric diagnoses.
I look beyond tomorrow and see nothing. I feel sad. I see the earth shake on Saturday. I’m supposed to have a party this weekend for my birthday. Haven’t planned it. My eyes feel heavy. I want to survive.