12 years is awesome!! I'm sorry to hear that you're struggling now, but this disease does seem to ebb and flow..hang in there, and thanks for the well wishes..some days it seems like a hope and prayer is all there is!
I get so caught up in the negatives (the appts, the pain, the expenses, etc) it's nice to be reminded there is hope. And, I guess I have come a long way from where I started, so I should share too.
I was actually unable to work for almost 4yrs (from diagnosis to shunt implant/recovery). We refer to them as "the dark years"..I had huge holes in my vision, and all the pain/weakness associated w/ IIH. I had to move back in w/ my parents at 30, and sold almost everything..I was so depressed! But, I started gaining strength after the shunt placement, and eventually started working w/ the Bureau of Vocational Rehabilitation..they were awesome! They helped me w/ resume, interviews, clothes, and supported me through the entire process. I started w/ a part time job to build confidence and strength. It wasn't all rainbows and butterflies, but eventually I got licensed again and entered full time employment. I've been working consistently for 6yrs now. It's been a long trail of baby steps, but it IS possible to function w/ IIH.