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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   My hospital horror story (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/204222-hospital-horror-story.html)

allentgamer 05-08-2014 12:17 AM

My hospital horror story
 
Well I finally sat down and put my story on video. I meant to only share it with family, but Facebook said it was to long. Imagine that :eek: LOL!

I have been thinking about doing this for a long time, but I was always afraid of the what if's. What if everyone thinks its stupid, or what if my family gets mad at me. What if, what if, what if..........:(

All the what if's aside......here it is. I hope you like it, and you can share it all you want if you have family or friends that dont understand RSD. I save the RSD for after how I got it. But I go into pretty good I think.

http://youtu.be/g5Q5msVJInk

anon6715 05-08-2014 12:25 PM

Hi Allen

Thank you so much for sharing your beautiful video with us. :)

From now on, I think my explanation for what's wrong with me is going to be that I had surgery and now my arm is all jacked up. ;)

KimA

Vrae 05-08-2014 01:12 PM

Way to go Allen! You must do the thing you think you cannot do. Thank you for sharing your story with us! I'm so glad you faced the fears of what if and did it! You've given some great information and advice. I thought I would cry when you started to talk about those who have taken their lives with this.

Really nice job Allen! :hug:

zookester 05-08-2014 07:49 PM

I'm sure this will touch many lives; thank you for taking the time to share your story with us and those that join NT behind us.

This quote made me think of you..

"The man who can drive himself further once the effort gets painful is the man who will win." Roger Banister

Tessa

Phaedra 05-08-2014 10:19 PM

Wow, Allen. That is an amazing story. I am sorry you had to go through that. Thank you for sharing. :hug:

Thanks, Phaedra

visioniosiv 05-09-2014 10:23 AM

Allen,

You're a great oral communicator and storyteller. The 46 minutes felt like 4.6 minutes:)

Beyond leaving a legacy for your family, your stated intent is to reach those who don't know how "fortunate" they are, and to therefore live each day as if tomorrow may not come. But I really think the video is as much a testament to your own decency, compassion, and desire for the betterment of humanity as it is a cautionary tale relation of the horrors you've been through.

The ironic part is that anyone who hasn't gone through RSD themselves will automatically look at the man communicating through the video and think - "Hey, it can't be that bad. Look at that guy - he's positive, intelligent, strong willed, and has a great sense of humor. Plus the dude has great hair. How could he possibly be in all the pain he says he's in? If my leg was on fire, and I was at a McGill pain index level equivalent to the amputation of my friggin' leg, I sure as shiizer wouldn't be able to put together a video, let alone do all of the things he says he still does. What am I missing?"

The answer, as far as I see it, is everything. And there's the rub:) We have to experience something for ourselves to truly know it.

Thank you for doing this - really awesome sharing and very much appreciated.

allentgamer 05-09-2014 10:12 PM

I actually sat down 3 times in a week to do this, and all 3 times before wound up in tears before I could finish one. After 14 years I am able to put the pain in a place in my brain where I can fake it pretty good. Only of it isnt at a 10+.

The part where I talk about those who decided to leave us.....you can find the posts in this forum. It really is sad. Especially when it was in those years where I was trying to learn to deal with this thing that had a mind of its own, and hardly anyone could relate to me.

I drove my friends and family away by complaining every moment someone was near me. All I was looking for was someone to try and understand. That still hasnt happened, except in this forum :)

When I realized I couldnt complain to anyone, except those in here. It made life more bearable for my friends and family, and they soon were coming back to visit......and eventually I could relate a little information and talk about REAL pain to them in small doses.

I find that everyone thinks they are going to live out there lives and never really suffer. What they dont know is we live on this very fine line. It is so easy to to go off that line, and become one of us.....or not exactly what you thought your life was going to be....that is for sure LOL!!!

I actually believe the strongest people I have ever met.......are right here in this forum. A weak minded person could not handle even one day in the shoes of a person with RSD. I know a lot of you dont think you are, but you are :hug:

Lottie 05-10-2014 06:36 PM

Hey Allen, thank you for the video. Great message. The start of RSD/CRPS for me was due to surgery too. Immediately post-op I had mind boggling pain, swelling, color changes the whole nine yards and no one seemed to think it was worrisome. I consulted with an attorney and since I didn't die it wasn't "bad enough" for a suit against the manufacturer of the device that broke in my spine. Like you stated, it was a life changing event. Thanks for your support and kind words.

Phaedra 05-10-2014 07:05 PM

Once again Allen I am touched by your words. I am having a hard time getting my husband to understand, so I truly understand what you are saying.

eevo61 05-10-2014 09:16 PM

Always a bless!
 
Having you telling stories or giving us and advice and kind words make us think how much we let things go away,I like your video ,sad but the reality is ,you keep going on , that's what's matter and that's how many of us want to be,thanks Allen ,from Jesika :grouphug: and blessings .


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