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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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The Call

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Old 01-04-2016, 10:25 AM #1
Always_Believe Always_Believe is offline
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Default The Call
As I figure the last session of the pain program through RIC (Rehab Institute of Chicago) has recently completed, I placed a call to see where I am on the wait list and when the next session starts.

Please cross your fingers, say a prayer, throw salt, send good thoughts...whatever you do for luck/miracles/etc. The answer will guide my next steps and the direction I will take for the future.

Thank you
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Old 01-04-2016, 11:57 AM #2
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i'm praying for you Always. hope you get a call saying you are next in line for the next session. hugs coming your way.
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Old 01-04-2016, 12:47 PM #3
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Can do! All of the above are coming for good measure. I am going out with salt now...

Let us know what you hear.
Sending hugs and healing love,
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Old 01-04-2016, 03:38 PM #4
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Originally Posted by RSD ME View Post
i'm praying for you Always. hope you get a call saying you are next in line for the next session. hugs coming your way.
You got it. Oh, and can you also do something so that the Cubs will win the World Series, while you are at it!? I tried being good to see if that would work, but that didn't go so well. I think I just jinxed them.

You are in my prayers. I hope you are first on the list!
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Old 01-04-2016, 03:49 PM #5
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Ugh. While I am still hopeful (for a few more minutes), I happened to get a call from my insurance case manager today.

I am on a roll here I guess. What part of my function has decreased to the point of
a) once/week shower
b) ambulation/activity limited to bathroom & bed for the past 5 weeks
do these doctors not understand??? I had to ask my case manager to look into wheelchairs. She suggested I maybe consider another doctor in Chicago. Hello, 2 hour train ride is no bueno for the pain/swelling...I only agreed to RIC because of the "possibilities" it holds...possibilities I might add that I have been waiting for since mid-September.

I am seriously about to give up. I have a healthcare team that simply does not care that they have a patient whose condition is rapidly declining nearly entirely due to inadequate (read non-existent) pain management. Damn CDC/FDA.
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Old 01-04-2016, 03:54 PM #6
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Originally Posted by -Spike- View Post
You got it. Oh, and can you also do something so that the Cubs will win the World Series, while you are at it!? I tried being good to see if that would work, but that didn't go so well. I think I just jinxed them.

You are in my prayers. I hope you are first on the list!
Sorry Spike...my son is a HUGE Sox fan...even was Hero of The Game a few years ago. (wish I could post a link....)
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Old 01-04-2016, 04:36 PM #7
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Sorry Spike...my son is a HUGE Sox fan...even was Hero of The Game a few years ago. (wish I could post a link....)
Too funny! I used to serve at a church in Yorkville. Oh.. and may I ask.. Who are the Sox? Oh, yeah yeah.. the Red Sox... Now I remember. GRIN.. Seriously, I hope your son's team does well, The Chicago White Sox.

You continue to be in my prayers. I just wish I knew why CRPS is such a difficult disease to get adequate care for. It really does get frustrating sometimes. I wish you well.
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Old 01-04-2016, 04:44 PM #8
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Too funny! I used to serve at a church in Yorkville. Oh.. and may I ask.. Who are the Sox? Oh, yeah yeah.. the Red Sox... Now I remember. GRIN.. Seriously, I hope your son's team does well, The Chicago White Sox.

You continue to be in my prayers. I just wish I knew why CRPS is such a difficult disease to get adequate care for. It really does get frustrating sometimes. I wish you well.
It is indeed pitiful.
Thank you for keeping me in your thoughts.
(Chicago White Sox Hero of the game 9/28/12 happens to be his Mamma's hero too )
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Old 01-05-2016, 11:12 AM #9
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Default Are you hoping they customize therapy based on RSD?
ARE YOU HOPING that RIC customizes your therapy based specifically on RSD?


Quote:
Originally Posted by Always_Believe View Post
As I figure the last session of the pain program through RIC (Rehab Institute of Chicago) has recently completed, I placed a call to see where I am on the wait list and when the next session starts.

Please cross your fingers, say a prayer, throw salt, send good thoughts...whatever you do for luck/miracles/etc. The answer will guide my next steps and the direction I will take for the future.

Thank you
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Old 01-05-2016, 02:35 PM #10
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Quote:
Originally Posted by Fiery1 View Post
ARE YOU HOPING that RIC customizes your therapy based specifically on RSD?
To be honest...at this point I have given up on RIC. In my train of thinking, no doctor/company/program that concentrates on pain management allows a patient to be in 6-9 pain 24/7 for 6 months.

Working with insurance to find another PM and most likely another PCP. I'm not looking for miracles or ultra specialization, I'm looking for someone to look at my functional decrease directly related to pain and attempt something more than "here's a new pill, try it for a few months" and when it doesn't work that's all they try. My function has gone from 60% 15 months ago to about 10-15% today.

Willing to go through whatever motions the insurance/doctor requires but I will not accept my healthcare team throwing their hands in the air and walking away when there are still options to try.
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