My EDS is something I don't commonly talk about, especially on here, in detail. But it certainly can, and does make life difficult, especially with an 8 month old who gets bigger by the day.
Last time you heard from me, things were going well. Then, the next morning, I woke up, rolled over, and reached across my body with my right arm, with the intention of scratching the left. Suddenly, there was a very loud pop - louder than usual - a burning sensation, followed by numbness and terrible pain all at the same time. I thought, "crap, that hurts a bit more than usual". And then I got out of bed, grabbed Baby C and brought him back into bed with me for some snuggles and to rest my arm for a minute. It didn't really help, but I tried to get around. I just couldn't. I got C changed and dressed, but that was all I could manage. Then I looked in the mirror, and there was my shoulder, dangling, stretching my arm far beyond the length it should normally go. Crap... It's out. And it's out good. I proceeded to text MH and tell him what had happened, accompanied by a pretty picture of the mangled thing. I hadn't expected it - I was just going to "deal" - but he was able to work from home that day. And it was a good thing. As the day went on, my pain got worse and worse. I used ice and heat and Tylenol as I was able and MH took over most of the duties with Baby C.
When MH did get home, I was able to attempt a shower, and decided to try and get my shoulder back in. I tried, and something popped for sure, but it hurt. A lot. MH tried to help me and by the end of the day, it was starting to move a lot better and it felt like things had really gone back. Don't get me wrong though, I was still in a lot of pain, but it seemed a lot less severe. By the next morning, however, it seemed like things had slid back out. It looked like my arm was still dangling. I just tried to push through the week as well as I could, using my left arm to lift C and do almost everything else I could. But by Friday, I couldn't take it anymore. Although, I knew my shoulder wasn't all the way out, I knew something wasn't right. I'll make a long story short. After being turned away by three doctors, I ended up in the ER, and three hours later I was finally being seen (though not really heard... This doc was totally not "buying" my story, don't get me started), and being told that I would need surgery to correct things long term due to a lot of tearing and scarring. And this used to be my "good" shoulder!
For now, though, I have kinesiology tape all over. It's really helping, thank god. I'm hoping to delay any surgery as long as possible, but at the same time, just want to get it over with. Haha... It's a conundrum!
Anyhow, due to all of the stress that this pain has been putting on my body, my POTS has been a lot worse. My POTS is something I talk about even less, because when it's good for me, it's really good. When it's bad... Well... We're talkin black out moments every time I stand, no matter how slow, headaches, constant nausea, problems with appetite, and tight chest with lots of heightened heart rate and super low blood pressure. This all leads to severe blood pooling, which leads to swollen, and burning feet and the sensation that someone is holding a curling iron to the muscle in my calves. It's hard to explain, but it feels like a shocking burning that comes from inside my bone, working its way out to the surface of my skin. So, it's been a bit rough physically these last few weeks.
To top it off, last week I lost a family member. My uncle. He wasn't a well man, and he definitely wasn't all there anymore. He remembered me a lot longer than I thought he would, but by my cousin's Wedding in May, he didn't remember me at all. We "met" roughly 5 times that weekend, though he did call me by my mother's and younger sister's names in one conversation. Lol He was a sweet man. I remember that even when he seemed confused and lost, he was somewhere else, almost rewatching beautiful parts of the past and retelling them to me, as if he might project them on a screen. He told me countless stories about my own past that I had no recollection of whatsoever until he mentioned them. He had so much kindness in his eyes. MH was his buddy, though. My uncle always remembered MH. Even in a weekend when I "met" my own uncle several times, he would say "oh yeah!!! [MH]... I like him. He's my buddy!". :)
I could go on, but I'll end with this: Uncle D, you will be missed. Rest in peace; rest in love.
Zebra hugs and love,
Ashley
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