Nickie Coby (puppybraille) wrote,
Nickie Coby

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The news I never thought I'd hear

You know how you read news stories of horror, and you think I hope that never happens to me!e Well, for me, there's been a special type of that kind of story that hits close to home.

It's hard to get even remotely involved with the RSD community without hearing about people who have systemic or full-body RSD. I think it's a special type of hell, but it has nothing to do with whether you accept the grace of Jesus' sacrifice or not. It's the hell of burning pain, wherever it is on your body, accept with systemic RSD, it's all over your body. I won't go into the horror stories I've read. I hate to even tell this story because I don't want to discourage those with RSD, but I need to tell my story.

Back in November, I went to see a well-respected RSD specialist at a teaching hospital. First off, I'd never been to a teaching hospital before. The thing is that appointments are quick and there are a ton of residents and students in the room. I felt like I didn't really matter, like I was just exhibit A in a long list of patients. The rsd case in room 8. I felt like I wasn't in the room.

The first comment made by the doctor to his students was "as you can see, she has systemic RSD". He then went on to list many of the nasty things that come along with this. If you want to find out about them, there are plenty of horror stories on the internet, I don't wish to flood my blog with them, what I'm writing is hard enough.

Without discussing any other treatment options, asking me about what I've tried or suggesting anything less drastic, he examined me and said "the only hope of getting your life back is to go into a Ketamine coma for five days."

You can't imagine how that made me feel. I did push and found a few options I was sort of aware of. One, which seems most effective and least drastic, is a five day conscious infusion, obviously you sleep at night. This is what I will go with, if all of the pre-tests go well. There is a waiting list, and I won't be near home for the treatment, but at least it is less drastic and has a chance of helping me get some relief. I've gone through the blocks, biofeedback, counseling, medication, physical therapy, acupuncture and pool therapy. We've done what we can.

Emotionally, it's hard, hearing the words "the only hope you have of getting your life back" and then a drastic, dangerous and uncertain option really doesn't help your mental health. The truth is, I do feel like I've lost so much to RSD. I've lost many physical abilities, my ability to dance, my spunk, many dreams feel unreachable in my current state, my ease of being and my ability to act like a typical twenty-something. It's hard to use what's called my "wise mind" and look at the other part of it. But here it is.

I haven't lost my life. I haven't lost my friends. I haven't lost my writing. I haven't lost my faith. I have gained empathy. I have gained a greater understanding of who God is in the middle of a storm. I have gained new hobbies like beading. I have gained some friends I wouldn't have met.

I still feel hopeless much of the time, and I know that there has to be some plan for my life. I'll write more about the other side of the dialectic in the next post, and hopefully in the post after that, I'll explain more about dialectics.
Tags: anxiety, chronic illness, chronic pain, depression, disability, disability related, health, life sucks, migraines, rsd sucks

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