Update 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.  

I saw the neurologist and have started on Carbidopa / Levodopa (Sinemet) to treat the dystonia. Really promising start! I’m on a very low dose and am already seeing a difference with both the dystonia and my pain. I was able to work two twelve hour shifts with only very mild dystonia symptoms.  

So I love being a direct care nurse, but the job is physically demanding and I’m reaching the point medically that I can’t do it any more. Makes me sad. But I am now looking for a desk job. Can’t even begin to express how sad that makes me. But i have to take care of my body, it’s the only one I got. 

Had a misadventure yesterday. My knee went out when I was on the porch stairs and I had a nasty fall onto the stone step. I’m in a lot of pain today and feeling robbed since I had been feeling so good. No major injury which is a blessing. But boy do I ache!  

Was able rest all day yesterday, thankfully. Today I have to get a COVID-19 swab done (pre procedure) and am doing a mask give away. So, I have to be up and about. Moving is a good idea anyway. At least, that’s what I’m telling myself. 

Thursday I have a dental appointment where they will be doing a scaling and planing. I had my first visit last week and that went well. No problems with my teeth. I have mild gum disease which I suspected with the gum bleeding. But given it’s been twenty years since I saw a dentist and I have EDS, my mouth is doing amazing.  

Friday I have an endoscopy. It’s the first step in trying to figure out what’s going on with my stomach. So, not looking forward to the procedure but hoping this work ip leads to answers. And hopefully having answers leads to solutions and feeling better. Tired of abdominal pain and looking four or five months pregnant. The nausea is awful. 

Tracking my sugars and ketones for a while. Just making sure that my diet is on track. I wasn’t worried about it before because it was for weight loss and what I was doing was working. But the neurologist informed me that keeping my numbers in a narrow range is likely to help with the dystonia. So, it’s now worth tracking the numbers. And what’s one more thing to keep track of? 

Well, I think that’s everything that’s been going on in my life. I hope you are all well. Stay safe and healthy! 

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