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You Are Strong. You Made It This Far.

Published on November 19, 2019 under RSDS General Info

Written by Barbara Graham for the RSDSA blog.

How and when did you develop CRPS/RSD?

I was diagnosed with RSD in April 2004. The injury occurred in July 2003. I worked in the security department of one of Rockford, Illinois’ leading hospitals. My partner and I received a call to the psychiatric floor. They were trying to admit a 17-year-old, who did not want to be there and was on drugs.

After we struggled with the patient in the hallway and returned him to his room, the nurses came in to give him a shot to clam him down. But after seeing the needle, he started throwing punches again. He knocked my partner back and to the floor. I grabbed him and he turned around and threw me into the wall. I hit my head against the wall and my right leg bent and my heel touched my butt.

Once we were able to get the patient under control again and he was given his shot. Once the patient was clam we left. I noticed some pain in my right leg with a small limp. My leg continually worsened. Swelling, redness, pain, stabbing, burning. It felt like someone was taking a knife and sticking it in my leg all over. A few days later I went to my doctor and for the next six months I went through all kinds of test, scans, poking and measuring that just came up with the same answer: I don’t know.

My family doctor knew this was not like me and sent me to a specialist at University of Wisconsin-Madison. After one look at all my test, x-rays and my leg, he knew I had RSD. I was just so happy that we finally knew what I had and it was not just “in my head.”

Now the long road of treatments including injections in my spine four times a week started. It came to a point that the pain doctor was making the injections so strong to numb the lower half of my body to give me some relief for a few hours. This went on for awhile until my back developed scar tissue were I was getting the injections and now needles were breaking trying to get past the scar tissue. We tried a pain pump, but that lasted only a month. I was also on fentanyl all this time. It was a very hard and long road to get were I am at today with a stimulator implanted.

What has daily life been like since your diagnosis?

I first felt sorry for myself. I was mad, moody, and angry I used to be independent and strong and I was no longer that way. I now became dependent on many people who were friends, family and strangers. I needed help with everything from getting dressed, cutting my meat, washing, and even sometimes wiping my butt. I had to either use crutches or a wheelchair. The RSD soon started traveling to my arms. Once I received an implant, I started feeling better and doing more for myself. I still needed some help, but not like before. I am also off the crutches, out of my wheelchair and can use a cane!

What is one thing you wish those without CRPS/RSD could understand?

That my moods have nothing to do with them. Just because you do not see it does not mean that it is not there.

What advice would you give to newly diagnosed Warriors?

We are here to help you get through all of this.

What advice would you give to Warriors who have had CRPS/RSD for many years?

You are strong. You made it this far. Never give up.

What activities or treatments have helped you find temporary or long term relief?

Some medications, the stimulator. No activates help me, but I keep moving because I need to.

What else would you like to add?

RSD has been one of the hardest things I had to learn to live with and adjust my whole life to. I never saw coming. I feel it is rougher than my cancer.

Please consider making a donation to RSDSA today!

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