Saturday, March 13, 2010

Trial and Error

So, I wonder if it will only be low moods that prompt me to write things down. What am I saying? Of course it will be. I will have to try to write when I am having good days too.

I am also wondering if today I will have enough energy to go for a short bike ride. Last year I could bike without problems or regrets for 3.5 to 4 hours. This year, it seems to be more like 10-20 minutes. Last Monday I rode my bike to my doctor's appointment. It was incredibly freeing. Since sometime in January, I haven't been able to walk for very long without a lot of pain and fatigue. So, the 20 minute ride was fine, and that felt really encouraging. I had to walk up the hill, but that's ok. On the way back though, I got on the wrong side of the canal. I think I make this mistake at least once every year. However, this year, the 45 extra minutes kinda killed me, and I was still paying for it 2 or 3 days later. So one of the challenges is figuring out stuff like this. My body seems to have very delicate limits set on how much physical activity it can handle.

I wish I would get a call from the neurologist. I have been planning to just call them myself, since they are taking awhile to call me. but I was waiting for a confident day, and now it's Saturday. I also don't want to annoy them. I just want to tell them I'm available, and I'll get there if there's ever a cancellation.

My ...girlfriend(?), rodeo partner(?)... I never know what to say. She lives with me, and we're in a relationship. Anyway, we'll just call her D. D just came back from a walk with the dog, and brought me a chocolate bar. So there's a reason to be in a better mood. D and I have both been having a hard time walking the dog, so I'm glad she wanted to this morning. D went to the hospital emergency clinic yesterday, and they sent her home with pain killers that made her sick all night. So anyway, we are both having some troubles. The ER doctor said her case is a "medical mystery".

They are going to test me for Charcot Marie Tooth disease. My grandma had it, and it's apparently highly inheritable, and a lot of my symptoms seem relevant. Now I'm worried about my Mom getting it. The doctor scared me when she asked if I had noticed any muscle wasting as she measured me legs in various places. But the other day I read an article that suggested this doesn't seem to happen in patients who develop symptoms after their bodies are done growing, only in people who start noticing symptoms when they're children. So if this is what it is, I would probably have one of the less severe cases. Also, I have found several inspiring things on the internet about people who have this condition and lead full, happy and productive lives. So, if that's what it is, I think I'll be ok with hearing it. I haven't gotten any other leads so far. I guess if it's not CMT, they'll suggest other tests and things, but I am wondering what those things could be. Doc said Fibromyalgia a couple times before she researched CMT, but when I look up the symptoms online, it doesn't seem to make sense to me.

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