My CRPS Conqueror Story
By Kristi Oen: CRPS Conqueror, Founder of P.A.I.N. Help, Vice President of the Naples Holistic Chamber of Commerce
Like many people with CRPS, I have spent most of my life avoiding and hiding because the reality of living with CRPS is just so cruel. Having conquered my CRPS I am happily sharing my journey with you and hope that you have pain-free days again.
Summer in the Chicago Suburbs always meant going to Santa’s Village. I had been a little chicken about certain rides and was going to skip the Tarantula, but my sister and brother teased me and I got the courage to go on the ride that changed my life forever. Mid ride the arm broke and my bucket went sailing forward and fell onto the asphalt 8 feet below. This was the start of the CRPS in my legs, migraines, and my right foot/leg’s numbness. My parents took me to doctors in that first year; however, the general consensus was that the pain was in my head. Age 11 was the first time I thought about committing suicide because the pain was unbearable and no one was listening.
I suffered silently for years, as so many of us do, setting up systems and ways to protect myself from everyday life. When I fractured my ankle in high school, I didn’t understand why everyone wanted me to go to the doctor. The stabbing pain of the fracture was nothing compared to my everyday pain. Life continued and I managed until I got pregnant 12 years ago. It was miserable and awful in a new way. After the C-section, my body spiraled far worse than I could imagine. My CRPS went full body and into my organs wreaking havoc. I was seeing up to seven different doctors a week trying everything for years but only getting worse. Finally, my official diagnosis became CRPS, but no relief. Medications, nerve blocks, etc. just made me worse until I was lying in bed in a dark, quiet room, using a wheelchair, and permanently disabled for almost 4 years. After refusing the 7-day ketamine coma, the doctors suggested moving south.
So began my journey in Naples, FL. My mother came to take care of me for many months and saw the defeat in me. One day she said, “Kristi can you do one thing for me?” I resisted slightly and then reluctantly asked what? She said, “I want you to look in the mirror every day and say I am getting healthier.” I decided I could do that and I did. As simple as this sounds, it made a difference. I started meditating and focusing on bringing healing into my body. I found a medical device: (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4452849/) that I started using while meditating and thinking positive thoughts. Within 3 weeks I was walking, in 2 months, I was off my $1000 a month of 30 different medications and supplements and off my $1000 a month of therapies. Month after month, things keep getting better including those CRPS symptoms we are so familiar with.
I do not live in constant fear anymore. I was rear ended about 6 months ago and I didn’t relapse. I was sure I would – but I didn’t! I was sore and had headaches and as my husband likes to say – that’s normal! Another test came in December with a dental appointment. I have had CRPS since I was 10 years old. Teeth cleaning is just about the most painful and agonizing thing I go through-crating thousand needles of pain and waves of fire burning through my body with each touch of a tool. We usually take breaks and modify my teeth cleaning so I can manage it. We didn’t this time, we did the regular cleaning, the bite wing x-rays (which used to be medieval torture to me), the polishing, and the gum probing. I started to cry when my hygienist was working, she stopped, and worried she hurt me. I said no, I don’t feel it. I have never in my life had a teeth cleaning I could remember where it felt like it was just touching the outside of me instead burning through me. I no longer feel like a prisoner to this burning, suicidal disease that held me captive for 33 years.
Every day I keep getting better and better. The picture of me in the wheelchair is from a year and a half ago. I am a CRPS Conqueror and it is my passion to help others conqueror their pain! That’s why I started P.A.I.N. Help, which stands for Pay Attention I Need Help. Remember you are not alone! I understand where you are and where you are going.
PAIN is a four letter word but so is HOPE.