A little bit more about me

Well the past few days the defining thing about me is my disease as I've been in a major flare!

I have psoriatic arthritis. (PA) I've known since I was in my early teens that something was wrong. I knew other kids' hands and fingers didn't hurt like mine. I knew that their knees and elbows didn't ache. The Doctor told me I was "too young" to have arthritis and that it was in my head. My fingernails started going "weird" when I was about 14, they are very weird now!

This went on for years... actually decades. It wasn't until my mid thirties that I wrote my Doc and said "fine, if you think I need a psych consult, do it!" That made them pay attention. Still, I didn't get a diagnosis. Just a bunch of maybes. I have positive biopsies for Lupus, negative for the blood antibody. Huge family history of Lupus and many other systemic diseases.

One day I was in a book store and saw a book called "Arthritis." I bought it, it listed every type there is. I diagnosed myself and then noticed the author was a Doctor at St. Joseph's in London, Ontario. I wrote a long letter and faxed it. Well, his secretary called me the next day, told me to get a referral and voila... I was off to London. He confirmed my psoriatic arthritis and I was able to start taking the proper drugs. This after a full year of a swollen achilles tendon on my left foot, massive, painful idiopathic hives that showed tissue death when biopsied (though interestingly only appeared above the waist, below the knees and never on my face?) back pain, burst blood vessels and swollen fingers.

The drugs have changed many times over the years. I've even done one drug study. I don't qualify for most of the new studies as they are the biologics and any TB history excludes you. (I was exposed as a baby and still carry the TB germ in my lung. It shows up on Xrays and I always test positive on the skin test - I am NOT contagious and NOT sick though, it's held in check by my own immune system)

So the last few days I feel like I've been hit by a truck. I wake up constantly through the night from back/hip pain and I'm exhausted. I still go to work, do all sorts of stuff but feel horrible. The good thing is I know it will pass. The itchiness drives me to distraction and I'm scratching and breaking/bruising my skin. It's quite ugly and I'm glad it's long sleeve weather. The funny thing is I have very little skin psoriasis, just my elbows and my in my fingernails.

I have 2 cousins with Lupus, we're pretty sure my Grandmother and her sister both died of undiagnosed, untreated Lupus. A sister with psoriasis and my Aunt in Ireland tells me that "we're a scaly bunch back home!" You see, psoriasis comes in many forms some people have PA. There are 5 kinds of PA and you can have one or a combination of the 5. We're an orphan disease group as there's not a huge number and no money in it for the drug companies to find drugs just for us. They make the news ones for Rheumatoid Arthritis and Lupus, then test them on us to see if they work.

The good news is they've identified the gene that causes psoriasis so the next step is a cure hopefully. I"ve been going to work, enjoyed Easter dinner and my guests and am still doing everything I usually do. I'm just whinging because I feel so crappy, I'll get over it. This too shall pass... hey though if you've stumbled in and have a PA story, post it!