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Showing posts with the label diagnosis

Doubles and Halves

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Twice this month I have been asked how old I am - it was a double occurrence. This is a rare enough thing for me that I have to think about it. As a whole, I have forgotten how old I am and I'm good with that. My decision to forget my age came in 2009 when I had my first birthday after being diagnosed with chronic pain that would last the rest of my life. I had no desire to celebrate that year - marking what would just be the first year of constant pain. I wasn't in a great place emotionally and the thought of spending more than 60 birthdays (and therefore years) in constant pain was a depressing one. But this year I'm pretty sure I'm 32. At least, that's the number I tell people when they ask. It's close enough, I think. Half of 32 is 16. That occurred to me the other day when my 5yo was playing with numbers and asking me how much different numbers were when doubled. Sixteen. That's the year when I developed my first chronic pain symptom. At 16, ...

What's in a Diagnosis?

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In previous posts on my blog, I've mentioned Ehlers-Danlos Syndrome (EDS). I say that I have EDS but that's not entirely accurate.  I'm still in the process of trying to get a firm diagnosis. My first rheumatologist mentioned my hypermobility and possible related conditions but never followed through with that idea. It took being pregnant and the possibility of my having fatally dangerous heart symptoms for my doctors to pursue what condition I might actually have. My geneticist has ruled out Marfan Syndrome and said at the time that I either have Ehlers-Danlos, Hypermobility Type or Stickler Syndrome. Yesterday (at least it was when I started typing), however, the Ehlers-Danlos Society renamed the Ehlers-Danlos types and other hypermobility conditions and posted new diagnostic criteria for them. Click the picture to go to their website for more info. This classification groups all hypermobility disorders under the heading Hypermobility Spectrum Disorder.  It re...