Update 042120

Sometimes, keeping things balanced is just not possible and you have to choose between which crappy symptoms you want to have. That’s where I’m at today. Sadness. 

The other day, I was experiencing an electrolyte deficiency that lead to me passing out. Clearly, this isn’t a functional or safe state of being and needs to be addressed. So, I loaded up with extra sodium and potassium which got me feeling better. 

Until now. Because now I feel awful. The extra potassium has made my interstitial cystitis flare so it feels like there are knives in my bladder. I took some pyridium which helps a little. Now I just have to ride it out. 

Update 040920

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. 

Let’s remember to be thankful.

I am grateful to have technology that let’s me connect with those I am separated from. I’m thankful for my hubby who is always amazingly supportive. I am thankful that my daughter is home with us. I am grateful that none of us have COVID-19. I am grateful to be working. I am grateful to have the supplies needed to make masks. I am thankful that I know how to make them. I am thankful that I have been able to continue with nerd nights on the internet. I am thankful that there are so many working to get this virus under control. 

What are you thankful for? 

Keep Track!

This is such a frustrating time to have a chronic illness. Everything is being put on hold. It is so frustrating to have things postponed after waiting months to get them in the first place and then not knowing when they’ll happen later. All the worrying about what can go wrong can wreck you. While I think we all understand why these measures are important and have to be put into place, it is still hard not to feel like we are being in some ways disregarded.  

Please, don’t let these delays in care hurt your self-esteem. Please, keep track of everything being cancelled so that you can follow up with everyone later when the COVID-19 storm settles. The medical system will be disorganized once we are past this and it is likely that people will be over looked. So, keep track for yourself. List them in order of your personal priority so that you will know which things to chase down first. 

Update 040220

So, I’m COVID-19 negative. That means I just have the regular, boring bronchitis I get about every year. Also means I’m able to mingle with the 2 peeps living with me and I can go back to work. I don’t have a temp, but since I still have an occasional cough and mild shortness of breath I will be wearing a mask for the entire time I am at work. Just because it isn’t COVID-19 doesn’t mean peeps want me sharing it! 

Update 040120

I hope that you guys are finding things to keep you busy in this strange time of staying home. I myself am getting a little stir crazy, but am doing my best to keep my ADHD brain from exploding. 

For those of you that don’t know, I have bronchitis and because I am a nurse I have been swabbed for COVID-19. First, I am not in any kind of medical crisis. I have some mild shortness of breath and a bit of a cough. I get bronchitis almost every year and it is likely more of the same, but I have to be sure what’s going on before I can return to work. I am still waiting on the test results and have no idea when they will come back. The labs are pretty busy right now. Long invisible lines. 

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