Hi! This looks like a great place for advice, encouragement, hope.
I have epilepsy, which never created major problems in terms of making me feel disabled. But in 2010, everything changed.
Apparently had seizure while cooking. I love cooking, had been mastering all sorts of skills since the 80s. Renowned for some desserts.
Anyway, was working over a cast iron griddle and apparently passed out; lucky I didn't fall on my face, but right hand suffered 3rd degree burns. Index finger partially amputated, middle finger barely saved...it's a stick. Whole hand crippled.
I could cope EXCEPT that index is screaming in pain. It swells periodically and when it's not, it just seems to burn endlessly. My neuro doc just diagnosed it as a reflexive sympathetic dystrophy; says the nerve are hyper, essentially.
The epilepsy med already makes me loopy; don't want to live on pain meds too. I did find that a couple of over-counter creams, roll-ons help temporarily. My doc is going to add gabapentin to both try and control my seizures (I'm having breakthroughs much too often now) and because it's a good nerve drug.
But what I need here is encouragement. I feel so depressed; for the first time in my life (I'm in my 50s) I'm disabled. I'm scared to work in kitchen; do I spend my life on frozen foods? Or make sure my husband's always there? He's going to night school; we were bankrupted by 9/11 and then 2009 crash, when I lost my contractor's position as a medical writer.
How do I maintain a business? I'm taking on fewer assignments, but not considered disabled!
I can't lose weight (gained 20 lbs from sitting so much, and eating to fight fatigue).
Even afraid to walk outside.
And of course there's the endless pain. When it ebbs, I'm somewhat productive; I get to my writing, I even knit...even w/bad hand.
How do I cope? Seeking more emotional support than physical relief, but anyone w/ideas for latter also welcome. Thanks