Background

Welcome! For those who haven't heard about the fun medical stuff I've been dealing with - or maybe you were tuning me out when I've been talking before, here's what's been going on.

Somewhere over last winter, I noticed some changes on my skin - fading pigment and what appeared to be calluses on the tops of my hands (how does one get calluses on the tops? hmmm....). Plus, itching and it just appeared different. I go to my friendly dermatologist, thinking I'd get a prescription and be sent on my merry way. He was struck by the symmetry of everything and suggested it might be scleroderma, an autoimmune disease that attacks connective tissues. At the time, he explained that there was the type that only affects the skin and "the bad kind" - the type that is systemic and attacks organs. It is worth noting that during our appointment, he left me in the room for about 15 min so he could look stuff up on the PDR! Around this time, I'm thinking "hmmmm..."

Tests are done, and Dr. Dermo refers me to a Rheumatologist, doctors who specialize in autoimmune diseases (as well as arthritis - I'm like the youngest person in these waiting rooms!). A booty-load of tests are done at this point. I go back in and Dr. Rheumo explains that I do indeed have systemic scleroderma (the aforementioned "bad kind"). He explains that it's already attacking my lungs, to the point where my lung capacity is only at 60%. Y'all know I don't smoke, right? Not good...

Dr. Rheumo says I should see the department at UCLA. He says they are among the best in the country - on the level with Johns Hopkins, Mayo - you know, all the heavy hitters. I don't argue - sure it's a considerably longer drive than Torrance, but we're not talking about a sprained wrist here.

It's around this point that I get a little freaked out. I hardly ever get sick, yet suddenly I'm in and out of doctor's offices, getting poked and prodded and X-Rayed seemingly on a daily basis. Plus, the whole idea that I have this chronic, rare and potentially fatal disease is weighing on my mind pretty heavily.

At UCLA, everyone is amazing, and I start to relax. Dr. Dinesh Khanna is my doctor and Tina Burger is the nurse. Everyone is cool and nice and really understanding. Tina gets me support group info as well as the number of a long-time scleroderma patient for me to call. Dr. Khanna explains that this does not have to be a death sentence and it can be treated.

I leave with instructions to buy a blood pressure checking device - I'm to check it 3 times a week. There is a danger that the kidneys could be affected and a spike in BP will warn me of that. I'm also given Nexium - evidently my GI tract is showing signs of beng affected and the Little Purple Pill will help protect my esophagus. Sigh...

Follow up visits on next post - stay tuned!