I Just Want To Be Well For My Son-A Mother’s Story

I just want to be well for my son. A Mother’s Story

I don’t even know what healthy is!

But my son needs a strong and healthy mom.

I’m a 27 year old disabled mom with a rare syndrome called Ehlers Danlos Syndrome type 3- Hypermobility.  It’s a multi-systemic disorder, meaning it effects, in severe cases like mine, almost every single body system.  It’s caused by a defect(s) in connective tissue.  Collagen is mainly effected, which the body contains about 85% of!

I remember the pain started around the age of 7.  It was nerve pain from carpal tunnel and tarsal tunnel syndrome which was the worst!  I was told I was being a baby about it and that it was just growing pains (I am quite short, only 4″11.5″.”)  It was joint pain daily as well, with some muscle pain.

I also had panic attacks from all the pain, it was so overwhelming, I couldn’t sleep and got gastrointestinal migraines.

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A 26 Year Old Spoonie Shares Her Story (Part 3)

My primary doctor has referred me to a rheumatologist, who I will see in June, because my last blood test revealed a positive ANA panel. This means I likely have an autoimmune disorder, on top of everything else.

I am scared to go see this specialist, as my last rheumatologist I saw outright told me I was crazy (!), was too young to have so many problems, and that I was obviously making it all up, I was being dramatic, and it was all in my head.

It’s a tale too many chronically ill patients hear.

I’m not being dramatic; I’m being honest.

I wouldn’t be paying a medical professional to help me if I wasn’t at breaking point!

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