Hiya! I’m Erin, and here’s a bit to help you get to know me and what I deal with and have been dealing with for a while.
In January this year I had a hysterectomy and operation to have endometriosis looked at and corrected as well as it could be. I’ve had it since I was 15, which has meant that I’ve never been able to have kids. I am, however, one of those weird dog mom people, and the greatest aunt ever. I'm not biased, I swear. I've had horrific pain at least once a month (usually much more often) since becoming an older teen. It came with chronic migraines of a few different types, awful arthritis and fibromyalgia that was worsened by some drug and hormone therapies that I tried because of my infertility over the course of several years.
One of my ovaries, I found out, has been adhered to my abdominal wall for a number of years by my endometriosis adhesions. Yes, endometriosis can make your insides stick to your other insides. It kinda looks like... well, taffy.
"It's just painful taffy made of scar tissue that swells up and bleeds. What I've experienced, although typical for moderate to severe endometriosis and, I found out through the course of my MRIs and surgeries, adenomyosis, have resulted in often disabling pain."
The operation went well and I've experienced an overall reduction in monthly pain of over 50%, which I shouldn't have to tell you is really exciting. It's life changing.
Since then, however, because my migraines have been improving so much (hormones, guys) we decided to adjust meds. Yay, right? But my blood pressure and dizziness have gotten progressively worse. Every time I get up too fast my vision greys out and I stop being able to hear things, fall over and I often run into things. APPARENTLY the medication had been keeping a lid on it so well that this problem never showed up much, other than unusually high blood pressure readings all the time. I always assumed it was just the pain. I didn't know that it has been lurking for years. So a handful of months ago, it was finally time for my POTS diagnosis!
We did a poor man's tilt table test, some other b/p testing and went over a lot of heart rate data I'd collected over several weeks and in the end I got the diagnosis I expected of Postural Orthostatic Hypotension. We’re still messing with increases in salt, hydration and different b/p meds. Compression and rest seem to help a ton too. I'm still learning what dysautonomia means for me- although I know I've been dealing with it for a long while now, it's only gotten a lot worse recently.
The biggest problems day to day for me have to be cognitive disfunction (aka brain fog) which make me super forgetful and a total airhead. Books are my drug of choice for pain distraction, and I’m taking meds for my PTSD related nightmares and insomnia. Those seem to be the longest term problems from the endo and/or other chronic pains. I’m also a little bit ADD when it comes to hobbies, which helps too. I could never deal without the help of my husband and devoted family. They do more for me than I even know. I’m very blessed to have Tim in my life- he's amazingly patient with me and my "Hey, Tim?" calls multiple times a day, now that he's working from home. He's even helping train the dog- he has a bag of treats on his work desk, and she LOVES the "Go find Daddy" game... although she seems to think my mom's name is Daddy, too. Hah!
I'm adjusting to being someone who needs mobility aids in my daily life, and they help a lot. I'm hoping that my memory and vision improve soon, and am talking with my neurologist about it.
In the meantime, I read my books at a ridiculously large print, my dog helps me walk straight and my husband helps me every day. I'm a lucky woman.
Erin @ KindleKitten.com