Celiac Disease

Exhausted trying to get a diagnosis of hEDS.

But now I'm under pressure because my two sons show symptoms. One is Autistic, one is pending assessment. And me? After seeing all the paperwork I realise I'm an undiagnosed autistic adult at 46.

This is on top of, my sister's Chiari Malformation, my late Father's Ankylosing Spondylitis, my Fibromyalgia (supposedly), Hypermobility etc.

Having a hell of a week. As I got full records from the doctor to check over for insurance, and I was diagnosed with CFS & Hypermobility Syndrome in 2000 - the doctor NEVER divulged it to me.

#AnkylosingSpondylitis #Pacemaker #Fibromyalgia #MastCellActivationDisorder #ChiariMalformation #CeliacDisease

My partner is working 2 jobs to support us both. I’ve been out of work for two years after getting fired because of my illnesses.

Getting let go from multiple positions in a row really shook my confidence. Today he and I had a big fight because he feels like he’s carrying all the weight and responsibility of the income, and has been very frustrated with me and snapping at lots of little things that turned out to be big resentment about me not working. He feels I’ve been unemployed way too long and need to get it together and be an adult. It’s hard with arthritis, brain fog, pots, celiac and EDS :(

He gets frustrated about things like needing to do the stairs to grab something when I can’t, or getting annoyed from seeing me wincing in pain, or when I get upset at strangers’ invasive questions. He feels like a caretaker not a partner. He just wants me to get a job.

I took a certificate course in medical coding, but have been slow to schedule the state exam because I’m terrified to fail and also don’t really know how to navigate getting hired & retained with visible disability, chronic illness and as a cane user.
Really need a hug and maybe some tips?
#EhlersDanlosSyndrome #AutonomicDysfunction #CeliacDisease #Arthritis

I have been dealing with some new loss of balance and muscle weakness symptoms recently. The neurologist is concerned. My partner thinks it's stress. But right now, all I can think about are my 17 existing diagnoses, all of which impact quality of life, none of which impact length of life. I'm not sure I can handle one more diagnosis like that. #AutismSpectrumDisorder #ADHD #PTSD #ChronicFatigue #Fibromyalgia #GenderDysphoria #Arthritis #Diabetes #CeliacDisease just to name a few

Hi, I’m Rae!
Today was more pleasant than I expected. My new cane is wonderful and helps me walk longer distances without any joints dislocating or hurting! I am receiving ableist comments from my family about using it as a late 20s person, but it’s good for all of us to remember that anything people say is just projection of their own insecurities and really has nothing to do with us. I grilled up some smoked mackerel, green beans in chili oil, and fluffy rice in a Sichuan sauce as an early dinner. :) #EhlersDanlosSyndrome #CeliacDisease