Wednesday, August 22, 2012

You Look Mahvelous...You Know, Even Though You've Had RA For 40 Years....

Yup, 40 years. I've probably had RA longer than pretty much anyone else I know. That said, I probably look better than most people who have been diagnosed for 10 years.

I spent most of my childhood in remission. Yes, that unobtainable goal of NO PAIN, and I enjoyed it, as much as a child can enjoy something that they think is normal.

As life went on, things became more difficult. I was proactive and got on biological meds as soon as they came out when they didn't work I pushed harder. With my first try out I gained remission on Enbrel. Two remissions in one lifetime, I guess that makes 40 years of inflammatory arthritis almost bareable and then the Enbrel stopped working and the RA got worse and then Remicade gave me a bad reaction, and Humira didn't work, then Arava and Orencia and even methotrexate didn't work.

Then I started to look like a real RA patient, one with a limp due to two ankle fusions. A gimp due to two back fusions, and thankfully a pretty easy elbow surgery. I can't turn my neck because of a natural fusion. I think I look a lot worse than I used too, but thankfully not like a 40 year patient of RA.

Part of me is so thankful to be mobile and not in a wheelchair, to be able to type with my fingers and use my hands even if they have to wear splints or smell like Biofreeze, to be able to move my neck the little that I can instead of having to wear a collar.

But the other part of me that has suffered for 40 years thinks it's so visible, how can you miss it? It has changed me in so many other ways just because I can walk and move my fingers doesn't mean it hasn't affected me in a million different ways. That's the downside of this disease, it's invisible so people don't understand quite how pervasive it can be.

40 years and I look good, I just wish I actually felt as good as I look....

2 comments:

Crazymamaof6 said...

What is your email lady? The one I had for you doesn't work anymore. It's the spoon theory on "you don't look sick . Com." Read it. If you haven't before. You look fabulous. Love you. Sorry I wish you felt as good as you look. But I'm glad you don't look as crappy as you feel. I get that part of it. Thyroid cancer was one of those invisible diseases that everyone assumes you look OK why don't you feel great? Sucks. Hugs. I'm glad you are back. I've missed you.

stripeycat said...

It's the silent pain that's the worst... if you had a gaping wound people would sympathize without you feeling like you had to justify it...
I think you look marlvelous too!
A positive attitude keeps you young.