Autoimmune leading to AVN from side effects

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play82
Posts: 12
Joined: Wed Nov 17, 2010 11:03 pm

Autoimmune leading to AVN from side effects

Post by play82 » Thu Feb 23, 2012 8:34 pm

I started the program the first time after having an autoimmune disease (that took forever to diagnose, was really sick, in hospitals etc.) possibly triggered by (or made worse by) high heavy metal levels. I was treated at Johns Hopkins and when a doctor their made the Dx, I was at the end of my rope and assumed i would be told It was psychiatric yet again. This should be reassuring except since it wasn't, it just made me think I would feel like crap forever. I do have a little issue with the program when it emphasizes the 'its all in your head' about the hypochondria. Having never suffered from that, I have no idea what its like, but it seems like a delicate balance between reassuring anxious people who are hypochondriacs (meant in the Dx sense- not disparaging, as it kind of sounds : ) and not discouraging people with an undiagnosed illness from seeking Dx and treatment.

It was not a case of going to 'my doctor' and he knew right away, as I said, I went through a year of being told it was all in my head before ending up in emergency surgery. (my autoimmune disorder was triggered and partially treated by removing benign tumors- kind of an odd one- message me if you would like more info). It took persistence that something was wrong before finally getting an answer and treatment.

How I ended up here and a big fan of the program is that this situation left me stressed, depressed and anxious. I did not want to see the reality of the medical system and having never been seriously ill before- I was shocked by the experience. But, I do get a little upset by the simplistic nature of the statements of it just being a panic attack or something like that.

Anyway, I now learned I have avascular necrosis (AVN) in both hips and shoulders (possibly more joints) as a result of the Prednisone I needed to take while I was sick and am looking at a lifetime of total hip replacements (I am young, so I will need multiple ones as they wear out). I am now waiting for experimental surgery to hopefully cure this before I need hip replacements and a little stressed and down and starting program again (I was so much better last time at session 7 that I stopped).

Just introducing myself to Chronic Disease group! : )

Question: Anyone else dealing with physical limitations to exercise? I am banned from even walking until the surgery and for a while after. I can swim, but I don't have access to a pool right now. Anyone have any ideas for 'exercising' as program suggests without actually doing anything? (other than swimming : )

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