The times when I want to write are always the times that are the worst. It is cathartic to work through in words what one experiences especially painl. Also, it is a way to categorized overwhelming emotional and or physical experiences.
So, I guess I am not feeling so hot. My joints are struggling. We have started a heavy duty PT routine, with significant load bearing. Last week things were going well, this week, I got a bit sick and things have acted up everywhere. The game is to figure out which joint is hurting the most sometimes. Generally, things are managable, but, when multiple joints hurt I really get so overwhelmed, I nearly shut down. I hate it. And, I am frustrated.
I am finally ( famous last words) confronting the essence of what it means to have a long term condition. Up to now, I have essentially been managing tactically, as each joint presents itself. (That is the word I use when my joints flare up. It is way to reduce the discomfort on many levels. It sanitizes the experience. Allows to be processed in bite size chunks, cuz, sometimes that is what I need bite size. Maybe that is why I like bon bons so much.
Anyway, I have started to put things in motion with my doctor's to try to establish a long term strategy for addessing my joints. Or, at least find out if they can do that. I am 3 months into being here in Vail and feel like we don't have any very good solutions. I am still in pain. I am trying really hard. But, there are still so many ups and downs. We have only been addressing things tactically. After two years of intesively doing this, following 10years of dealing with this particular diagnosis I need to do something different. Going on disability was the first step, Coming to Vail was the second step. Now, we are going to define the next steps.......and see where they lead.
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