April 21st, 2010

asleep at mal 9/09

That which we do not talk about part ??

This will be a two part entry, but first a bit of intro. If you catch my regular tweets, you'll see a lot of short posts about what I'm doing today and how I feel physically. Lately those have changed from discussing GI (gastro-intestinal) issues to talking about pain levels, energy, heart rate, numbness more.

It's not that the pain is any less when I have GI issues, but the GI problems were so bad and so frequent that mentioning the rest became of little importance in comparison; it was the inability to keep food in my body that was the most important problem that day.

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All of that said, in spite of the embarrassment and frustration and anger, I have no desire to give up. There are good things in my life: my family both blood and chosen; the weather in LA being better than DC; the fact that TGA is transient, and my brain still works albeit more slowly most days; I can still walk, workout, read, etc; it may hurt but I keep dancing.

I also have hope that one of my doctors will eventually figure out how to help me with the pain and the brain stuff. My coping needs shift (too much sometimes), so thankfully I seem to be fairly elastic. I just want some semblance of independence back; I still hate needing to be taken care of.

ETA: pain scale from http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html; not sure why the link in the body is failing.