I can’t remember what I did for my birthday this year. I remember the night before at Bing Crosby’s and the black dress. I remember at Ralphs not letting them buy me cupcakes (I don’t like Ralphs’ cupcakes.) I remember opening the four cards Mom got me and the bouquet of flowers, but I have no idea what I did that day. Maybe I was sick. I know there was a plan and that it didn’t get followed… (flash) Dinner at Rubio’s. Yes. That wasn’t the plan though. I don’t even remember if I had a party sometime that week. This concerns me as I think it’s something I SHOULD remember. Don’t you?
(break to watch the rest of “Blue Collar Comedy Tour Rides Again”)
I got out my ring last night that I bought when I tested negative for HD. I was thinking about it because last week Sacha mentioned wanting to buy herself an engagement ring and the ring I have is just that. I’d forgotten how beautiful it is. Sadly, after a few hours it hurt my finger so bad that I took it off. Apparently my fingers are fatter now. But I wondered what my reward to myself will be when I get the results of this upcoming test.
I’ve been waiting on a diagnosis for years now. And the list I was expecting from a friend is not coming so I called my neurologist Friday night on a break and told him which test I want him to order. There is one dx I’m looking at in particular. It’s called DRPLA. Good luck Googling it and finding anything useful. This is the best thing I found http://www.ataxia.org.uk/data/files/drpla.pdf. It seems to fit and I’m hoping it’s what I have – not because I want it but because I want an answer. I want a name, some validation. You know? I want to be able to say, “See, I’m not crazy. I DO have an illness and it has a name.” I’d have an answer for, “Why are you twitching?” I’d have some proof that’s it’s not, in fact, a conversion disorder but it is in my head. In my BRAIN, not my thoughts. In my fantasy today I would get this wonderful/awful news and have a Celebrate Life party. The news itself would be a relief. This part of the search would be over. However, if it’s not what I have, it would be devastating… I want to have that party. I want to know what’s going on.
I talked about it with my therapist this week. It’s great having a neurology professor as a therapist. I asked him if he had any tips on dealing with cognitive impairments and he said if it is cell death in that region of the brain the best thing I can do is dance. God is good, isn’t he? (big smile) I also bought a ping pong paddle and balls. It’s all part of the story, revealed one page at a time.
I’m so exhausted. I really should sleep now. I’m going to a piano thing tomorrow and have to be on the trolley in 8 hours. Yuck. Hopefully it’s worth it. Thanks for listening.
© Michelle Routhieaux 2010