Hello my zebras and spoonies! Thanks for coming and visiting me today. I am glad that you’re here.
Well, I skipped on recording yesterday and didn’t do any posting yesterday because I had no spoons. I went and crashed out for like 14 hours and I’m feeling a little bit better today. It’s amazing how much sleep can make a difference for me sometimes. And then other times it’s like I can sleep all I want and I still feel exhausted. Yeah. It’s like playing Russian roulette when I go to sleep. Sometimes I’ll sleep 10 minutes and feel great. Sometimes I sleep 10 hours feel great. Sometimes I sleep those same amounts of times and feel like crap. You just never know.
Continue reading “Update 011822”
Been a busy couple weeks with doctor appointments. I have been lucky and have been getting really good doctors. That makes things so much easier!
I saw the cardiologist and am now formally diagnosed with POTS. Not changing anything with my management at this point, but having the diagnosis helps. Good to know for sure what I’m dealing with and helps keep all my providers in the know.
Continue reading “Update 120820”
I had my second opinion cardiology appointment. I have been diagnosed with POTS. It was a good appointment with a knowledgeable doctor. I’m glad I got the second opinion. I’m hoping that this new doctor can get me feeling better. We are focusing on diet changes first and if that doesn’t help he will consider medication. I’m glad he wasn’t eager beaver with the drugs. I’m on plenty and not looking to add more. 2 grams of sodium daily along with 4 liters of water is a bit daunting. And the caffeine is out. No real hardship there. Taking the salt as tablets because adding that much to my food is gross. It’s a crazy amount of fluid. I’m going to turn into a fish! I will continue with the compression garments, except he wants me to wear them 24/7. Not sure my skin will tolerate that, but we’ll see. I’m just glad I have a direction to move in. Hoping this will help.
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.
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.