Update 090121

I have been having a rough time over the past week. The heat has been making my POTS flare up. Still had to work a crazy schedule even though I was feeling like crap and was super tired. Work has been taking all my spoons. On my days off I’ve been doing the marathon sleep thing in hopes of generating enough spoons for the next round of work shifts. I’m not sure if the nausea or the fatigue has been the bigger challenge this week. Been a struggle to get anything down and then keeping it down has been a gamble. Fatigue is a challenge because there isn’t any way to get any more energy. There just isn’t any go and that’s all there is to that. So, yeah. It’s been a rough week.

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030921

I find myself at a strange place emotionally.

Years ago, my sister, Toadie, suggested that I might have autism. At the time, I completely dismissed her suggestion. Honestly, I didn’t even give the idea any real consideration. I’m not sure why, but at the time, the idea didn’t seem pausable. Perhaps because I was stuck in the mode of thinking about autism in context of childhood, male presentation. Perhaps because I was hung up on the idea that those with autism have some sort of speech delay or other vocal imapirment. Which I don’t have.

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120820

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.  

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103020

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. 

102220

Sunday I passed out and was unconscious on my bathroom floor for an undetermined period of time. My blood pressure was low and my pulse elevated. So off to the ED I went. I never like being the patient, but it’s particularly bad in the ED. The focus there is so narrow (understandably) that those of us with chronic illness often have a hard time in that setting. 

But I was pleasantly surprised.  

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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. đŸ™„I’m tired of barfing, but couldn’t get my nausea medication filled. đŸ˜‘Fun times. 

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.