My Dystonia

Hello my Zebras and Spoonies! Thanks for coming and hanging out with me today, I’m glad that you are here. Today I am going to be talking about my experiences with Dystonia as an installment in the “My Diagnosis” series. It has been a while since I made a post in this series, but there are several more that I plan on writing. In my usual fashion, I have gotten distracted again and have been writing about other things. But, I haven’t forgotten about these and promise that I will get to the last few that need to be written.

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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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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 050420

The last few days have been difficult, high pain days. Had a dystonic storm on Saturday, which was an unexpected work out. In order to stop the storm, I had to take a high dose of benadryl which kicked my butt. Have been resting and trying to let my body recover.  

I haven’t been eating as well as I should and it has resulted in exacerbation of my symptoms. The stress of all that has been going on is also a factor. But I have more control over my diet then the stress. I do what I can to manage the stress levels, but there is only so much I can do in that department. However, I have control over my diet. So, I need to eat better.