I may be in pain, but I am determined

Posted September 23, 2020

taffy standing on the beach with her arms out

I didn’t know I had hypermobile Ehlers-Danlos syndrome (hEDS) until age 26. I was born with congenital cardiac defects, and as a child everyone called me “double-jointed.” 

I was a very sports-involved tomboy covered in bruises, ace bandages, and casts, and suffered dislocations, ligament and tendon tears, sprains, and strains. I was always fainting with what at the time doctors said was due to mitral valve prolapse, a murmur, and other arrhythmias.

Into my teens and I had to drop my sports one by one, as I was often on crutches or in slings. Ballet was the last to go at age 19. I’d gone in for yet another cortisone injection for my knees and the doctor then said, if I didn’t give up ballet I’d be crippled and my knees ruined. That same doctor also had to perform surgery on my right shoulder to clean and repair the damage so many dislocations had caused.

At this time I had still never heard of Ehlers-Danlos syndrome (EDS).

By age 26 my joints hurt constantly. I was sent to a rheumatologist at UAB. It was then I was informed of EDS. I was told that I was too young for pain medications and addiction would then be the issue. Worse, I was told that I’d be crippled with arthritis from joint damage and walking with a cane in my 30s. I refused to accept that.

I am now age 37. This year I have had pericarditis and a diagnosis of sphincter of Oddi dysfunction causing pancreatitis. My pancreatic duct is stenotic/blocked and not functioning, causing bile to back into my pancreas and liver. This is very painful. The doctors believe these things to be related to my Ehlers-Danlos syndrome.

I am not walking with a cane, yet. I still work full time, on my feet as a scrub tech in Surgery. I work out six days a week in the gym and compete in bikini bodybuilding. I started as a way to strengthen my muscles to hold my joints more stable.

I’m feeling things much more these days. Some nights I can’t sleep as my shoulders, elbows, hips, and knees hurt so badly. I limp when I walk 50% of the time. My fingers have arthritis and swell. I pop and crack everything for relief. When things crack on their own, I am stuck in a painful place until I muster the courage to reduce things back into a more comfortable station. Walking for longer than average hurts my toe joints and ankles. I’m short of breath with my heart. I’m tired. All the time.

This may very well be my last year to compete in bikini bodybuilding as things are going. But I am proud that I have exceeded the expectations and limitations set upon my body. I have done more than most ever thought I could. I’m not giving up. I will continue until I can’t, and then I’m certain I’ll find a way around that as well. I may be in pain and hurting, and maybe even bandaged, but mostly, you’ll see that I am determined.

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