NeuroTalk Support Groups - Univ. of Colorado Hosp. RSD Docs / Nuero Dept ?

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Univ. of Colorado Hosp. RSD Docs / Nuero Dept ? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/171686-univ-colorado-hosp-rsd-docs-nuero-dept.html)

Quote:

Originally Posted by Vrae (Post 890242)

@ alt1268, thank you so much. I have not really researched the laws in CO for RSD/CRPS, but I will definitely check and see if there are any. Yes, I have seen the info on rsdsa.org thank you for pointing to that as well. It is good info and i haven’t taken that document to them, but i guess i should try. It’s funny how they won’t even look at the documents from the three docs that have identified my condition as CRPS II. It’s ridiculous.

The funny thing is that if anything I am guilty of not taking enough pain meds when I have breakthrough pain, and the pain ends up getting ahead of me. I have a love/HATE relationship with meds. And other times, when I took ALL the meds I have to resolve the pain (and that’s a lot), there was no getting past it without some big gun pain killer.

It is hard enough to deal with the fact that I am losing my ability to walk, and the shear volume of pain, that I am forced to plead my case EVERY SINGLE TIME, to every single medical “professional”, to gain some relief.

educate yourself
make yourself be heard clearly
in a inner polite manner demand
respect and not an *** who treats
people as numbers rather than by your name
stand your ground and please always have a
advocate with you if possible
standing with you

someone who cares

Quote:

Originally Posted by alt1268 (Post 890300)

I am away from home th afternoon. But get send u a copy of what I sent tomorrow. I will also send u contact info. On your state policies. I just figure if we don't spEak up for ourselves no one else will.

AND THAT'S THE TRUTH
STAND UP MOVE FORWARD
I WALK WITH YOU IN SPIRIT

that someone who cares

I have had RSDS, affecting both arms and both legs, for 19 years as of this past week. In the beginning I found much resistance; doctors suggesting it was all in my head. After 10 years my condition started to slowly improve on its own, until a car accident inflamed it beyond anything it had ever been before. Funny enough, I have found much help through a small people's clinic! Never have any emergency personnel questioned my condition, but rather offered sympathy. Nobody has ever suggested to me that there are special Colorado laws regarding RSDS... if anyone has any education or insight on this I would be grateful! I would suggest, that if you're running into prejudices concerning your condition, carry an audio recorder or use your smartphone, etc. to record such conversations. I'm sure the hospital's lawyers would be keenly interested in hearing it :-)