Blue Ribbon: Not a Winner.
Have you ever heard of a long burning joke? Comedy with a really, really long wick? Back in 2015, 10 years ago, I first tried to get on disability, I have several autoimmune issues, one which affects everyone with varying severity. Mine is pretty severe, debilitating, with daily pain, It was triggered when I was 16, it gets worse every year, driving me insane. This disease causes inflammation, damaging my joints and tissues, Disability determination telling me in 2015 to “try again when you’re in a wheelchair” was only one of my issues.
I walked my high-school graduation in flip-flops with a cane, My feet were too swollen for all my other shoes and I couldn’t afford new shoes again. After graduation I pushed through to college and 4 years after the start of the end, I got my diagnosis, It only took another year before I could easily say what was hurting me every day: Ankylosing Spondylitis. After years of confusing pain, I finally had a name, AS for short, a disease with no cure, Take the elevator up, Rheumatology is on the 3th floor. Humira.
Once monthly injection I gave myself that helped so much with the pain, I sobbed because I could dance again. But I got sick and it quit working, so on to the next once monthly injection, this like the last: Enbrel, It worked like a dream, I could hike like before, until an argument dropped into my life like a bombshell. You can be on your parents’ insurance until you’re 25, Unless your parent has a fit because you’re not part of the hive-mind. So at 23, my dad kicked me off of his health insurance, shut off my cell phone, and took away my treatment. Condemning me to years of irreversible damage with nary an ounce of discontent. Six excruciating years later,
I finally got a job that gave me health insurance and Taltz for one, Back to monthly injections, but the damage was done. No amazing results like Humira or Enbrel, I felt better but it just didn’t work as well. And after a year it quit working, no reason why, So now I’m on a daily pill, Rinvoq, though it makes me want to cry. My inflammation is lower than it’s ever been, which means less damage is being done, But it’s doing nothing for my daily pain, making me think it isn’t the one. Remember the damage from the 6 years without medication? Now that it started, it hasn’t stopped, pain so severe, I dream of sedation.
The time has come, earlier than it should, but this is my life, I need a wheelchair, I can’t walk more than a quarter of a mile, even with my cane, so I can walk short distances, to be fair. But 2 different doctors documented their agreement, I will not get better, I unfortunately need it. Remember the beginning? The long running joke? The comedic wick that burns oh so slow? 2015, disability telling me to try again when I’m in a wheelchair, you know? Two different doctors, MRIs showing damage, and yet to the wheelchair I need, my insurance said “no.”
“It was important for me to do this, not for myself, but for each one of the Faces on this site and those who are still unknown. I wanted to show the reality of this disease and the courage it takes to live our lives. I wanted to honor those who have Ankylosing Spondylitis, who I admire and respect.”
—Cookie Hopper
Creator of Faces of AS, SAA Member, and Face 0062
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