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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Getting Compression Socks

Hello Zebras and Spoonies!

Thanks for stopping by and visiting with me. Today I’m going to be talking about compression socks.

There are many medical conditions that benefit from compression therapy. Everything from blood pooling, edema, pain management and sensory needs can be helped with compression. The challenge is that our doctors often recommend getting compression socks but then we’re left solo trying to figure out which socks we should be wearing. If you’re new to compression socks, here’s my list of tips to help you find your perfect pair.

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061121

Hello Zebras and Spoonies!

Thanks for stopping by. How has everyone been doing? I hope that life and the universe has been treating you well.

I have been doing the travel nursing job for three months now and thus far I am loving the work. But I won’t lie; it’s been tough. I’ve been working as a Med Surg nurse, doing direct patient care and it is a very physically demanding job. The most difficult part is the amount of time required standing. The twelve hour shifts can get hard. I’m doing my best to find a balance with my body, but I know that the reality is that I will not be able to do this work for much longer. The plan is to work for a few years as a travel nurse and get all our debt paid off. Then we will have more flexibility for choosing jobs and locations when my body has more inevitable changes.

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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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Autonomic Dysfunction

This is startling. Only 20% of EDS-H patient’s had normal testing for the autonomic nervous system. 80% with autonomic dysfunction (postural orthostatic tachycardia syndrome or orthostatic intolerance). That is huge.

When I think about it, this makes sense to me, but I really didn’t expect the numbers to be this high. Given that we have lax blood vessels that easily allow blood to pool in places and ways that it isn’t supposed to, it makes sense that it would be difficult for our bodies to regulate our blood pressure and pulses in different positions.

Orthostatic Intolerance and Postural Orthostatic Tachycardia Syndrome in Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome, Hypermobility Type: Neurovegetative Dysregulation or Autonomic Failure?