My left shoulder has been a mess for years. It's a very long story but suffice it to say it has slowly gotten worse over the last 6 years or so and had gotten to the point of no return. My doctor told me "find a surgeon you'd like to see and I'll get you the referral."
I contacted my old surgeon and then proceeded to scour the internet. I was looking for something specific. Someone who focuses on shoulders, operates in a great hospital AND preferably someone who's actually had a patient with EDS before. After a few hours and a sleepless night I had 3 options. My first choice was a whopping 3+ hour drive away but when I called my doc she said it wouldn't be an issue.
So I set my appointment. Hoping for a miracle but fully prepared to hear that he thought I needed my shoulder fused. Well, no miracle. He looked at my shoulder, shook his head and said "So you have EDS. That's really not good. But I guess I don't have to tell you that." I laughed. My husband didn't. Then he grimaced and said "well, I don't think you're going to want to hear this." And we both knew. The second he said that fusion was really the only viable option I just sort of chuckled and told him that was sort of what we had figured.
Luckily he was a very patient and understanding surgeon. Most surgeons want you to just jump on board with being sliced up. When a surgeon tells me I -have- to have something done, I run in the opposite direction. But Dr. Mallon took his time. He explained the limitations the fusion would cause. Explained that they literally stick a plate around my shoulder, screw it in AND screw the head of the humerus into the socket. The range of motion loss is severe and permanent. The surgery itself is irreversible. They have to cut out the muscles/tendons etc. that sit between the bones so that they can grow together. No turning back once I have it done.
So I left his office, armed with that information and the phone number to his former EDS patient who had BOTH of her shoulders fused. She's in her late 50s but had her first one done when she was about my age. We talked for a couple hours on the ride home. I emailed her after that. The hubs and I talked... and talked... and talked... and then decided to schedule surgery.
Now my shoulder looks something like this (I haven't gotten a copy of my xrays yet, but I'll post them when I do! My screws are actually thicker than in this pic I think. I have 9 holding the plate and 3 through the joint!)I tried to come up with a post before surgery. But my mind was all over the place. This is still really jumbled. Just... it's altering. In so many ways. Some insignificant, some life changing.
I had surgery on the 21st of August.
I got home on the 25th of August.
I got my staples out on the 4th of September.
I got out of the immobilizer on the 5th of October.
I am slowly learning how to use my arm again.
It is awkward. It is painful. It is frustrating as hell.
I can't even begin to explain how it feels. I go to reach for something, I can feel certain muscles trying to work... and my arm just sits there. It can't rotate in the socket anymore, so any movement where I try to reach out to the side... nothing happens. It feels sort of like it's stuck in neutral. The first day was the worst. Now I'm starting to learn.
But the process is going to be long. And I'm so tired of being "in recovery." I just want to be DONE. I know that I'm going to have to learn how to get around it. I know that I won't be able to reach the top of my head ever again. I realize ponytails are a thing of the past. I get that I can't put a bra on my "normal" way. I'll have to hook them in the front. Hell, I even have to pull up my friggin PANTS differently than I used to.
And that's just the "easy" stuff. You should have seen me trying to season chicken the other night for dinner. Or pulling something out of the microwave.
Maybe if I had a normal "other" arm, it wouldn't be so annoying. But I tend to do a lot of things (like taking stuff out of the oven/microwave etc) 2 handed since my wrists are so wobbly. Now I'm either fighting to get my arm to reach the things, or trying to do it with my right hand and not let my weak floppy wrist cause me to drop things.
Oh. And my arm doesn't move when I walk anymore. I can't figure out what I'm supposed to do. Do I move it myself to try and make it look more "normal" or do I just let it hang there? I can't decide which one looks more awkward. And while I know Q doesn't care and I don't worry so much about strangers... we're going out with some of the guys and their wives tomorrow. So not only do I have to try and wear a bra (the plate runs over the top of my shoulder, so the strap that goes over that shoulder feels really WEIRD right now and just annoys the hell out of me) but I'm anxious about looking like a total freak. I've already decided I won't order any food I have to cut for fear of looking like a complete moron struggling to do it myself or having to ask Q to cut it for me. *sighs*
Okay. This is fairly jumbled up. But then again- so am I right now.
More later...
No comments:
Post a Comment