Trifecta

Nov 01, 2024 10:02


It seems like I've always had cold fingers and toes, but when I was a little girl, I loved the winter and snow. The season meant family gatherings, good food, and no school. Snowball fights, snow forts, and angels were my favorite past times. Even the years in Kansas City with their biting winters didn't seem to trouble me back then.

In 1992 I was a newly single mom and started to experience breathing issues, along with falling asleep after little to no exertion. I was misdiagnosed for the next two years with asthma, bronchitis, Epstein-Barr, and finally Chronic Fatigue Syndrome. After moving to Austin in 1994 a lymph node biopsy revealed that in actuality I had Sarcoidosis. Polyps were building up inside my lungs and drowning me from inside. Cool huh? Years of Prednisone have kept the sarcoid at bay for the last 25 years.

In 2016 after returning from New Zealand, I was diagnosed with Ocular Histoplasmosis. My body was creating blood vessels in my eye and I lost 5% of my field of vision in my left eye. Steroid shots to the offending eye over the next three months stopped the histoplasmosis in its tracks.

Now, in 2024, I find out that I also have Raynaud's Disease, which is when blood vessels constrict, limiting blood flow, which causes numbness, coldness, and pain.



In speaking to my doctor and recounting certain memories, I have had this since I lived in Austin - for over 25 years. It explains my aversion to super cold air conditioning and all those times I'd get back in bed with socks and gloves, curled up in a ball, begging for the heat to come back and the pain to stop. Turns out the episodes are called vasospasms. It was never continuous, but the lingering effects of the spasms and their frequency made it seem that way. My fingers don't turn white, like some. The tips feel like ice cubes and ache. My toes feel like stone - cold stone that hurts to flex, but it's the only thing that remotely alleviates the ache. I 've been flexing my fingers and toes for years not knowing the root cause.

In some ways I feel vindicated. All the people who thought I was overly dramatic or that it was all in my head, or my Texas blood not acclimating to the Ohio climate.

I've been back in Ohio since 2006 and I recall my first month back home. I couldn't get out of bed, my bones felt like someone was waging war on them. My entire body ached and now I know that it was an extreme reaction to my location change in the middle of winter. My body basically shut down and no one could pinpoint why back then.

I look back at my swims in Barton Springs and the foot/toe cramps that plagued me afterwards, and now I know the why.

Not sure why that brings me so much peace.

My fingers and toes still ache and feel cold. I'm on the second day of medication (Nifedipine) that is supposed to help with that and my toes felt almost normal on this mornings swim. Also, the meds are used for high blood pressure, so I may be able to go off the Hydrochlorothiazide. Fingers crossed.

The takeaway for me is that my body is as much of an over achiever as I am. LOL

Sit the fuck down for a minute and take it easy.

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