Josi (O-Josi-O) (eris_devotee) wrote,
Josi (O-Josi-O)
eris_devotee

All these eye surgeries are going to be for nothing and I'll end up blind anyway if I don't get biologics.

I have now had 3 different teaching doctors in 3 different specialties tell me that I have the worst thyroid eye disease they've ever witnessed or treated. This is confirmed by my Grave's forums experiences - everyone else gets pages of other people's experiences; I get:"wow. that sucks. good luck".

I have a great team when it comes to Grave's - all three eye docs AND endocrinology. They are fighting for me, and convincing rheumatology to play along and make a case for rituximab for lupus. This puts me in the position of actually hoping my echocardiogram shows mild pericarditis.

I'm a little less anxious about the post-surgical adjustment procedure. The one right after surgery should be easy - I usually get 4-6 hours of time that I can't remember too much of, so I should be doped enough to be compliant and not apt to have an adrenaline rush. I'm still very concerned about tolerating a second adjustment a week later. Even if I don't need any adjustment, I still have to let the surgeon cut back the sutures. Conscious and eyes open. No way to use visualization, so all I've got left is breathing to help control any ascent into panic.

The stress I am experiencing is so intense I am dissociating. and thankful for it.
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