Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 06-21-2008, 12:27 PM #1
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Help Flare Flare Flare ~~~~

[F][F]
What an aweful week !
At times it gets sooooooo old to keep going through these horrible flare ups ! The worse thing about it is im still expected to perform on my job despite not being able to think through the pain ! I saw my Ortho who felt it would be helpful for me to consider working from home mid week due to the 2 hour drive to work and back each day to keep the stress level down thus far possibly helping to prevent some of these difficult flare ups. I want to fight going out on disability until i need to. My supervisor was receptive initially saying if i could get documentation from my Doc that she would approve it.I work approx 80 hours a week and dont mind working hard as I feel passionatly about what i do ! She then changed her mind saying that she would have to consider medical leave. Medical leave? I asked to WORK from home mid week ....I am so angry about this as i have been a devoted employee for 8 yrs and to get this type of push back really upsets me ! In any case i began a flare up around 1 1/2 weeks ago the usual fatigue initially then the horrific increased sensitivity burning nervy pain swelling muscle twitching dystonia etc... I cant sleep i cant think straight and all i can do is wait it out. It helps so much to know that you all understand what I am going through as most in the community dont. I just cried myself to sleep earlier and it was a helpful release of anger and frustration. I am thankful to be alive.....Gentle Hugs to you all... Your friend,'
Kimberly
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Old 06-21-2008, 08:30 PM #2
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First of all, *Big Soft Gentle Hugs* for you!!! I know what long, drawn out flares feel like for sure! I just recently got calmed down from a 3 week long one. I've had rsd for 5 1/2 yrs now and I've never had one last that long before. I'm still quite exhausted!

WOW! You work that many hours?! Kudos to you for keeping on going the distance! :-D I haven't been able to work since the rsd started and know that I'll never work again. I hate that the most, but am now starting on a path to getting a home business up and running. It's a great challenge and one I'm looking forward to. It is and will keep me busy! I've heard stories from others who did or still are working and have stories similar to yours. Their bosses being either complete jerks, given ultimatums, etc. It really is sad. I feel that if what you do allows you to possibly work from home a couple days a week, then it shouldn't be a problem! Some people....

I wish you much luck in getting to do the at home thing a couple of days a week.

Hugs,

Karen
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Old 06-22-2008, 09:06 AM #3
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Quote:
Originally Posted by GalenaFaolan View Post
First of all, *Big Soft Gentle Hugs* for you!!! I know what long, drawn out flares feel like for sure! I just recently got calmed down from a 3 week long one. I've had rsd for 5 1/2 yrs now and I've never had one last that long before. I'm still quite exhausted!

WOW! You work that many hours?! Kudos to you for keeping on going the distance! :-D I haven't been able to work since the rsd started and know that I'll never work again. I hate that the most, but am now starting on a path to getting a home business up and running. It's a great challenge and one I'm looking forward to. It is and will keep me busy! I've heard stories from others who did or still are working and have stories similar to yours. Their bosses being either complete jerks, given ultimatums, etc. It really is sad. I feel that if what you do allows you to possibly work from home a couple days a week, then it shouldn't be a problem! Some people....

I wish you much luck in getting to do the at home thing a couple of days a week.

Hugs,

Karen
Thanks so much for your reply and for your words of encouragement. You are so right! I have had to change my job role from a practicing Peds nurse to an onsite IT support specialist to now an IT AC which means that I am on the pc in my cube all day working on our EMR system. I am fighting to stay employed as long as I can. Why would an employer discourage this ?? Its beyond me as well. What can we do except continue to try our best ? I wish you the best of luck with your new business ! It helps to keep your mind focused off the pain of RSD..... Thank you again for your reply it meant so much to me to hear your voice in this !! Bless you my friend..

Kim
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Old 06-22-2008, 02:22 PM #4
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I had an employer who was way less than supportive after my bout with colitis, two months downtime, and an emergency surgery to remove my colon. I pushed to return to work 5 weeks after my release from the hospital, where I had been on TPN and IV pain meds with a pump . . . because I wanted them to know how glad I was to be back to work. My surgeon limited me to 4 hours a day to start . . . and my employer responded by reducing my case load by 10%! Wow! How very supportive is that? On top of that they began to write me up for things that happened while I was laying in my hospital bed near death! On paper they looked so-o-o-o-o nice a cooperative . . . but i was being called into my supervisor's office regularly and put down for not keeping up with my cases.

Have you discussed ADA accommodations with them? Have you discussed this with an ADA attorney? Giving 80 hours a week puts you in the position of being the "good guy" in this scenario.


But bottom line . . . your health comes first. I hope you can find a balance, and satisfaction in whatever it is that you decide to do.
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