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Member
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Join Date: Jan 2015
Location: IL
Posts: 279
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Member
Join Date: Jan 2015
Location: IL
Posts: 279
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I hate how familiar this all sounds, in more ways than one.
I just left the chronic pain program at RIC for a similar PT reason. I agree with Catra - no one should be made to feel inadequate when rehabbing...for any reason, not just CRPS, but CRPS tends to be more difficult and slower to rehab than say your standard knee surgery.
On the mom front...I will never forget when my son had one of his many surgeries when he was about 10 years old. He was non-verbal and had spastic quadriplegic cerebral palsy. He got out of surgery late and I was breast feeding my youngest, so I asked to see his orders before heading to the hotel for the night. He was ordered tylenol and morphine. I told the nurse, when he wakes up from the anesthesia, give him the morphine. She agreed and I headed to the hotel. When I came in in the morning, my son was screaming. I hunted down a nurse to find out when he last had morphine. He hadn't. He was given tylenol about an hour before we got there but otherwise had nothing. I asked why he was not given morphine considering how he was screaming. The nurse looked and me and said "I thought that was his normal". Someone could have (and probably should have) died that day.
Learning what I have through my most recent trial, having a team that is knowledgeable and compassionate regarding CRPS is extremely important. Barring that, you need someone who will simply do what you ask. I wonder if a rollator or standard walker would be better for your son. Obviously more emotionally difficult to accept, but maybe for use at home. One of the things that has been holding me back is using furniture & walls instead of my walker at home. The other thing that has become clear through this is the pacing consistency. If he can only stand 5 minutes on a bad day, he should only do 5 minutes on a good day. Otherwise we crash & burn. A wise LP often has said "low & slow". OT suggested today to not increase any activity until I was able to tolerate the minimum every day for a week & then only increase it by a few minutes.
Remind me your location...maybe we can get something figured out closer to home. I know the foot down position is very difficult for me as well.
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Believe in the Strength of Faith and Hope, within there is Peace and Love...Always ~pe
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