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 few days. Nothing. So I called again Monday the 23rd. The said to give it “one more day.” Nothing. I sent a MyChart message Wednesday politely demanding the results be released and for someone to call me to discuss them. Last Thursday night most of my test results were released to MyChart, but with no explanation, so I had no idea what they meant. So I called the office Friday morning to see what the heck was going on. Continue reading “I’m a Little POTSie…”

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 another time…

How many siblings do you have? What’s your birth order? One sibling, an older brother.

If you were a shoe, what kind would you be and why?Β A pointe shoe. I used to be a dancer.

What is the strangest/weirdest thing you have ever eaten?Β I’m not a very adventurous food person, so I don’t really think I’ve ever allowed myself to eat anything too strange or weird.

Optional Bonus question: What are you grateful for from last week, and what are you looking forward to in the week coming up? I’m grateful that I had a few “good” days last week. I’ve worked out a few quirks that enable me to feel slightly better than in previous weeks (but only if my body as a whole decides to behave itself that day.) This involves taking salt tablets and drinking Gatorade in the middle of the night if I happen to wake up, but I’ll do what I have to do.

This week, I am looking forward to trying to challenge myself in new ways to get myself feeling better. The more I figure out about how my body works and wants to behave, the more I can understand how to make it better.

πŸ’›ribbonrx

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.

img_1706
Heart rate after brushing teeth

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.)Β As you’re doing this, you place two of your fingers over your carotid artery. Your heart rate is rapid, probably in the 120s, maybe pushing 130. And all you’re doing is standing up, brushing your teeth. Continue reading “A Day With Dysautonomia”

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 nosebleed. Such is life on aspirin and Plavix in the depths of winter.

Do you prefer juice or fruit? Juice. First, because I’m lazy, so if it involves washing, cutting, slicing, etc, I don’t like it. Second, I tend to prefer my diet in as liquid a form as possible, especially lately for some reason. I just don’t seem to have the energy to chew my food anymore. Continue reading “Share Your World- January 23, 2017”

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 and less as time goes on, and why what I have written hasn’t exactly been stellar.

Brain fog.

img_0886This is not just a getting-older-I-forgot-where-I-put-my-keys kind of thing. Or when my husband forgets where he put anything and everything because he’s a man (and somehow I know where everything is, because I’m a woman.) But I am not normally a forgetful person. I remember things I have no business remembering (ask my childhood friend Jenny.)

What I’m talking about is actually quite disturbing to me. Continue reading “Brain Fog”

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 wasΒ 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.

Welcome to the inside of my head and heart. Be warned, this is honest and raw.

Trigger warning: self-harm, depression, infertility

January 1, 2016: “Well, here’s to hoping for a good 2016. I hope it’s better than last year.” Continue reading “2016, In the Style of Personal Journals: January”

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?Β 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 close it.) Plus, there’s actually a heat vent on the closet floor that the cats will sleep on during the winter. Continue reading “Share Your World- January 16, 2017”