Friday, January 27, 2017

Chronic Illness. Chronic Pain. Chronic Questions

I saw a new doctor today. Down in LA. He is the best doctor I've ever seen. He knew his stuff, his credentials are crazy, and he was my last shot for my hips. He was going to be the one to help me.
And he did. He did all he could and he gave me great advice. It just wasn't what I wanted to hear.
In a way I feel like I shouldn't be writing about this because I don't know a lot about it all yet, but writing is how I process. So this might be choppy, but it will help me.

I have Ehlers Danlos Syndrome, hypermobility type. I'm very bendy. It's more than that though. EDS is a connective tissue disorder that affects collagen. Collagen is like the glue that holds everything in your body together. Mine doesn't work properly. Right now that is causing a lot of problems with my hips.

This doctor today told me that I have great hips structurally. There's nothing for him to go in and fix. The problem lies in the instability caused by my EDS. My hip is very unstable and has caused a labrum tear and cartilage damage. All in all, pain.
The problem is that I have one of the few things he can't fix. His advice to me (as a surgeon) was to never ever let a surgeon operate on my hips until I have a hip replacement. Because there is nothing they can fix.

I like that he told it to me straight. I got a lot of information from him. The end result was just that I need to learn to live with this. Pain meds don't work for me. I'm trying physical therapy, but struggling with being hopeful about it.
This was not what I wanted to hear. I'm wondering where to go from it.

I've been using forearm crutches to help get around and especially at school. Really the only place I don't use them is at church. It can be difficult enough managing four 3-year olds with a dog. I don't think I could do it on crutches.
They help. I feel more stable than I have in months. It's kind of an amazing feeling not worrying when I'm going to fall next. It worries me though that I'll have to rely on a walking aid for the rest of my life.
I'm working on physical therapy to build my muscles. That should help, but I don't know how much.

What do you do when there is nothing to do?
You keep pushing. I know I can't give up. I know I have got to keep moving forward with what I have. Right now I have physical therapy.

Have any of you experienced anything similar. I am more than open to any tips or help.

For now I'll continue one assisted step at a time. I know I'm not alone. I have great support around me. Right now I'm sitting on temple grounds. I know my Father in Heaven is watching over me, sending help my way.

I might bend, but I won't break.

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