Living with AS: Twina's Story
Wow - hard to believe I have been living with AS (symptoms) for more than 30 years now. I was always an active child, played sports, cheerleading, dance, gymnastics. I had severe aches and pains but my parents always thought it was due to me being so active.
THEN...I grew up. I had my son at 19, and by age 20 I was in a full-blown panic with the pain, stiffness, spasms, heart conditions, lung conditions, kidney condition, osteoporosis in my hips, and the list goes on and on.
That was 30 years ago when we didn't have the knowledge we have now about the disease.
HLA B27 testing
I was sent to every specialist you can imagine. I was seeing a neurologist in Lexington (KY) who asked me if I had ever been tested for the HLA B27 gene marker (we all know now if you have the marker doesn't mean you will get AS but back then it was a great tool to work with, allowing more tests to prove the dx).
Of course, I had not been tested. Once tested, it was positive. At least then we had a direction to go in as far as more testing and treatment. Back then the treatment was random. Nothing really was approved for AS treatment so I was taking meds approved for RA.
A cocktail of pills
I was giving myself the methotrexate shots with different cocktails of pills. You name it and I have tried it. THEN....around 20 years ago the biologic meds were introduced, but again, not approved for AS.
My rheumatologist finally got me on the approval list since I had tried literally everything on the market and nothing worked. I started Remicade, then couldn't take it due to bad veins. Then I went through all of the injection meds and they worked for a time but my body got immune and I had to find something new.
I went back on the Remicade three months ago (better veins now after losing weight) and it is a miracle drug for me. Hoping my insurance approves the "up" dose I now need but if so I think I might have a few more "good" days than "bad".
Spending time with family
I now have two beautiful granddaughters who are 6 and 2. I trying to spend as much time with them and do as much with them as I can because right now my organs are really taking a toll.
My lungs are in horrible shape, my rib cage has started to fuse and breathing feels like ribs breaking. I break a rib about once a month now. I get sick more often, missing work more often BUT I am not ready to just stop.
I have an amazing husband who has been with me through all of this, and no matter what is thrown at me I know I will come through. But I will say hearing everyone else talk about their issues and giving advice really helps me.
Learning every day
I read through all of my emails daily and learn something new every day. I also know if my granddaughters end up with this disease there are many, many ways to help slow down the progress and help them to lead close to normal lives.
That's a brief snippet of my story.
Do you use the word disability to describe your AS?