Update 082120

The doctor thinks I have stomach ulcers and has put me on medication to help them heal. It’s been a week and things have improved, but not resolved. So now I’m beginning to question the possibility of a hiatal hernia. They are common with EDS. Yippies. Gotta call the doctor and make another appointment. 🙄I’m tired of barfing, but couldn’t get my nausea medication filled. 😑Fun times. 

ADHD Filter

There is no filter in my brain. I’m sitting there, trying to do something but I cant focus because I can’t shut anything out. I hear every sound: the drip of the faucet, the tick of the clock and whatever that weird clicking noise is. I feel the fabric on my skin, the fan, the pressure of the chair against my legs. What’s that clicking? I smell the shampoo I used, my husband’s coffee, I wonder what my daughter just microwaved? Smells good. What’s that clicking noise?! I see the flutter of the curtain out of the corner of my eye and have to look up at it to be sure nothing is coming at me. What is clicking?! Man, my daughter’s food smells good. Every stimulus leads to a thought. Each thought can tumble into a rabbit hole of rushing ideas. Got to fix that faucet. Man that clock is loud. Who knew clocks were so loud? Why are they so loud? Wonder if they all make the same noise. What is that clicking? That coffee smells so nice. But coffee is a lie. It never tastes as good as it smells… and on and on and on like that. 

Update 080720

The rheumatologist appointment went really well. I have been diagnosed with Osteoarthritis. That’s the best possible diagnosis. We knew I had a type of arthritis and I am glad to rule out autoimmune involvement. Osteoarthritis (OA) is inevitable with EDS-H, so I’m not surprised. It’s just a matter of mitigating the damage, just like it always has been. 

Got a referral to another doctor to evaluate me for knee braces. No idea how long the wait for that will be. 

My guts have been in revolt. Had a bowel impaction. Glad that the medications worked and nothing invasive (like surgery) was required. Bowel surgery terrifies me. Too much can go wrong. I do everything I can to keep the constipation in check so impaction don’t happen. But every now and again they still do. It’s very frustrating.  

Even more frustrating is that even though I have cleared my bowel, I am still having a lot of abdominal pain. Don’t see my PCP until tomorrow. I’m hoping for a GI consult. I suspect this is gastroparesis problems. It might be time for new interventions. Been mostly on a liquid diet and that isn’t a great option, but it reduces the pain to something bearable.