I feel down. I can’t stand this brain fog. It’s probably the most frustrating thing I’ve ever had to deal with, and one of the worst parts of dysautonomia/POTS. I’m used to having a sharp, functioning mind that could multi-task. Now I’ll think of something, get out of bed, and then not be able to remember why I got out of bed. I can’t really have thoughtful conversation, even when I’m talking to David. I’ll be talking and then stop mid-sentence. After about 15 seconds, David will ask, “Is your brain fogging?” And I just nod, sad and quiet. Additionally, I can’t write very well anymore, which is why I haven’t posted any original material in awhile.
It doesn’t take a psychiatrist to figure out that right now my life is exceptionally overwhelming. I thought I’d gone through a lot last year, which I did. Unfortunately, it appears, at least so far, that 2017 is turning out to be a real stinker as well. And we’re only a month in!
Maybe listing everything I’m overwhelmed about will help. I’ll try to make this as coherent as possible. However, between this perpetual brainfog and the fact that as of right now, I’ve been awake for 28 hours (couldn’t sleep due to pain and just feeling crummy in general…plus I wanted to finish a book I was reading), it may be a little bit off. Continue reading “Can’t I Just Be “Whelmed”?”
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…”
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 the 120s, maybe pushing 130. And all you’re doing is standing up, brushing your teeth. Continue reading “A Day With Dysautonomia”
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.
This 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.)
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 sad to…nothing, I guess. So how am I doing, really? Continue reading “Modifications and Coping”