Written by Shawn Elaine Anderson for the RSDSA blog.
This photo is of me and my husband this past holiday at a restaurant. I don’t cook much anymore and we met a friend out for dinner, I was not feeling well, but I really wanted to go, so I mustered up the energy. We were meeting a friend who has no family in the area, so this was important. I can see the pain on my face a bit, like a forced smile, but you know what? I went, I had fun, and I am so glad that I challenged myself to get up and ready to go out that day, but I am a Warrior… so I did!
How and when did you develop CRPS/RSD?
I was in a really bad car accident in 2005 where I was hit near head on by a drunk driver three times the legal limit. I had a compound tibia-fibula fracture and compound Lisfranc fracture on my right leg and foot. In the fall of 2018, I had an incident with my hands and they both were very red and swollen. In January 2020, five full years now, I was first suspected to have RSD. My actual official diagnosis was April 24, 2020.
What has daily life been like since your diagnosis?
I had A LOT of pain the first two years after the car accident and swelling and bleeding from my scars up to two years later. I kept working full time for years. Eventually, I then developed full autonomic nervous system issues over the year and it became too hard for me to work and I quit full-time work at 51.
Since 2018 I have worked some part-time jobs here and there and was awarded full disability in 2022. I rebroke my ‘bad’ foot on January 31, 2024 and the last year has been tough. I’ve been staying the course of “use it or lose it” and staying as healthy as I can mentally and physically so I can get through these hurdles. I’m thankful to have the unwavering support of my husband (pictured).
I used to cook all the time. It really was a hobby of mine but my hands just don’t have the strength they used to have so I don’t do that as much anymore. We actually moved a year ago from Phoenix, AZ to Northern AZ as I just had to get to cooler temps due to my heat intolerance.
What is one thing you wish those without CRPS/RSD could understand?
For the most part it is an invisible illness unless you see the breaks, casts, redness and or swelling… but it is invisible. No one wants this. I want for people who are not afflicted to understand that it is a serious issue and not just a functional disorder.
What advice would you give to newly diagnosed Warriors?
Always have faith in yourself no matter what. Gain support and advocacy from groups like RSDSA and others. Continue learning as new information seems to be available and being knowledgeable is key. You are still YOU. Yes, there will be challenges but always remember this is a beautiful life to live. And finally, it’s okay to isolate at times, but still find your tribe.
What encouragement would you give to Warriors who have had CRPS/RSD for many years?
For anyone who has endured this for many years and you’re not in full remission, you get injured again, and then the pot gets stirred again, etc. you know you have to develop a thick skin to be able to set boundaries and communicate clearly with people.
This has gotten easier for me over the years, but overall it is still hard. I just view every day as a gift. I smile every day and find the goodness in all there is outside what may have been our prior normal life. We have no choice but to adapt.
What activities or treatments have helped you find temporary or long term relief?
Physical therapy and staying physically active in general is what helps in the long run. I am fortunate that I have not really needed many painkiller types of treatments. I am on Celebrex and have toggled between Lyrica and Gabapentin for nerve pain and they really seem to help.
WRITING. Writing for me has been very therapeutic and helps me digest my thoughts and feelings about RSD and other co-morbidities. Counseling has been so key for me as well. Having a life coach (outside of a significant other, friend, or family member) to help you really look at things objectively and develop actionable plans for upcoming situations is great. Examples includes how to talk to family or friends about missing an event or what your needs are.
Spending time with my dogs is really important to me too. They are just such amazing creatures and give me such joy. I hope I am doing the same for them as well.
Anything else you would like to add?
Speaking of writing, check out my poem below to learn even more about my CRPS journey.
Connect with Shawn on Facebook and on LinkedIn. She also writes blogs for her and her husband’s music business on A432Life.com.
The Reality of Shawn’s Dis-Ease
When my bone is broke you see the cast
But you do not feel the pain that lasts
You don’t see agony, so hot and fierce
Like a miser I hide it in a tight coin purse
With great inflammation, skin shiny and tight
Nerves lose their sheaths in my mighty fight
The bone has healed, hopefully next is my soul
Yet my heart rate now is anything but slow
A woman blushes and glows, so I’m told
I sweat so much, hiding inside, once bold
Oh my dear Sun, I used to embrace as my own
Now there are days I wish you’d never shown
I’ve moved North and, yes, back to the snow
When sunny and sixties, still too hot I know
My skin dry and wrinkly, more so than most
But still to this LIFE, I pose a grand toast!
My bones I use and protect like fine crystal glass
Pain does not own me, I know it shall pass
I make the most of each day I’m alive and here
Trying to help others get through their fears!
Though my life took a one-eighty ‘bout face
Life is not a contest, I LIVE at my own pace
I Make NO excuses for a body that’s changed
I Just Embrace each day that I feel no Pain….
Every day I smile, on the outside I’m the same
I have nothing to prove… and I have ZERO shame
by: Shawn Elaine Anderson