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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. 

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Got my hands x-rayed and my blood drawn for my rheumatologist appointment next month. I got the Goddess of Phlebotomy, she managed to fill 8 vials and only poked me once. That right there is a small miracle. There is only one lab in our state that does the antibody testing so it takes a while to get the results back. That’s why I’m getting it done a month before the appointment. The x-ray results will be available later today or tomorrow. The x-rays of my feet showed arthritis, so it’ll probably be in my hands too. Now I get to wait. My favorite part 😜

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I had my first rheumatologist appointment yesterday via zoom. I don’t know about anyone else, but starting with new doctors is anxiety provoking for me. I have anxiety about being taken seriously and being believed. Will the doctor know anything about EDS? Then doing it over zoom on top of that made it only more anxiety provoking. 

My husband came to the rescue and got everything set up so zoom worked without any hiccups. 🥰 That made things so much better. 

The doctor was wonderful. He was knowledgeable about EDS and took my concerns seriously. I have arthritis and I want to be sure what kind it is before I begin treatment. He has ordered labs and x-rays to be done in a few month. Hoping that this pandemic will have passed by then. 

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I had a podiatrist appointment today. The podiatrist is amazing. I am so grateful for his compassion and how completely through he is. I wish more doctors were like this. Everything about his approach is completely validating which is so refreshing. As I look towards becoming an FNP, this man is my role model. This is the kind of provider that I want to be. This is the kind of patient experience I want every patient in my care to have.

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