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Month: January 2017

I’m a Little POTSie…

I’m a Little POTSie…

Sometimes the only way to get the best care is to take things into your own hands. I’ve done it before, and now I’ve had to do it again. But I’m glad I did. Dr. J had told me to call his office about a week after my testing that occurred on January 11th and January 13th to talk to a nurse about my results. So I called on Thursday the 19th. They said they’d call me back in a…

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Share Your World- January 30, 2017

Share Your World- January 30, 2017

This will be a weekly post of the most random of random questions to answer- to share my world! Thanks to Cee’s blog for being the brainchild behind this! What is the most incredible natural venue that you’ve ever seen in person? The Grand Canyon. I traveled there with family in 2013. We hiked all the way to the bottom and stayed at Phantom Ranch. Getting out was a bit of a disaster for me, but that’s another story for…

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A Day With Dysautonomia

A Day With Dysautonomia

What’s it like to have dysautonomia? Let me take you through a day in my compression socks so you have some idea of what I fight through on a daily basis. Imagine it’s a new day. You wake up and get out of bed. You do your business and then brush your teeth (with an electric toothbrush, by the way.) As you’re doing this, you place two of your fingers over your carotid artery. Your heart rate is rapid, probably in…

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Share Your World- January 23, 2017

Share Your World- January 23, 2017

This will be a weekly post of the most random of random questions to answer- to share my world! Thanks to Cee’s blog for being the brainchild behind this! Ok, I know it’s not the 23rd but I was feeling incredibly run down yesterday and didn’t feel like doing much of anything. Not that I’m feeling much better today, but I’ve gotten restless enough that I think I can sit up long enough to get this one done. Pause for…

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Brain Fog

Brain Fog

There are a lot of things I hate about having dysautonomia. The dizziness, the lightheadedness, the tachycardia, the salt, the fluids, the compression socks (even though mine are cute), the occasional need for a wheelchair in public that makes people think I’m a crazy faker because sometimes I can walk and sometimes I can’t (because people don’t understand invisible disabilities.) But one of the main things I hate about dysautonomia is part of the reason I have been writing less…

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2016, In the Style of Personal Journals: January

2016, In the Style of Personal Journals: January

I’m going to try something a little different here. Last year was a rough year for me due to medical problems I had. I poured out my heart and soul into my personal journals, which were my lifeline keeping me somewhat grounded. To give you an idea of what it was really like to go through all that I did, the rest of this entry is only direct quotes from my journals. I plan to do this every month this year….

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Share Your World- January 16, 2017

Share Your World- January 16, 2017

This will be a weekly post of the most random of random questions to answer- to share my world! Thanks to Cee’s blog for being the brainchild behind this! (The above picture was taken by myself at 3:15 am a few weeks ago during a heavy snowfall.) 1. Do you sleep with your closet doors open or closed? We have a small walk-in closet, so we keep the door open (aka there’s too much stuff in front of the door to…

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Modifications and Coping

Modifications and Coping

Finally, a post that’s not about dry medical procedures and appointments! I’m not expecting this post to be much of anything, though. I just need an outlet to get my thoughts together. Since my appointment with Dr. J the first week of January, I’ve made the specified modifications he asked me to do to help me feel better. But it’s not all physical things I’m dealing with. My emotions are all over the place right now, going from angry to…

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Non-Tilty Tilt and QSART

Non-Tilty Tilt and QSART

Today I had what is hopefully the last of my testing to determine which form of dysautonomia I have and what caused it. Combined with my testing from the other day, I’m hoping the diagnosis and cause should be fairly evident by the time all is said and done. I could hardly sleep last night worrying about these tests. I literally slept from 4:30 am-6:30 am, so I definitely wasn’t feeling my best when we arrived at the hospital. This…

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Whoa, I’m…Radioactive

Whoa, I’m…Radioactive

Indeed, I am currently radioactive. Here’s proof: This would have been hilarious had I had my jury duty at the federal courthouse this January instead of last January. Really, officer, I can explain… So the obvious question is, why am I radioactive? Well, as stated in the pictures above, I had medical testing done this morning to help tease out my dysautonomia diagnosis, and it involved radioactive stuff.

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