Update 011822

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.

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Update 121521

Hello my Zebras and Spoonies! Thanks for coming and hanging out with me today. I’m glad that you’re here.

I’m sure that you’ve noticed that the past week there has been an lack of posting on all my online locations. I simply have not had the spoons. I’ve decided to write an update today to explain the reason for the lacking of spoons and then I’m going to try to get some things into the cue for my various sites so that there will be fewer crickets.

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Update 112321

Hello my zebras and spoonies! thank you for coming and hanging out with me. I’m glad that you’re here.

Today I’m just going to give an update of life, the universe and everything that is me. Some backstory is that I have endometriosis and with that I’ve had a lot of pain, which has been progressively getting worse over the last five to six years. I have a Mirena IUD that I’ve been using to control the bleeding and pain. It’s not really doing the job that I need it to do anymore. It has been controlling the bleeding, but not the pain.

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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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Update 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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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.  

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Update 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.