1. Do you have a primary diagnosis, if so, what is it?
I am diagnosed with Complex Regional Pain Syndrome (CRPS)
2. How long did it take you to get diagnosed?
I was diagnosed about six months after I had a leg crush injury. Doctors performed 34 surgeries to save my leg from amputation but months later, even though my healing continued, my pain seemed to not get any better and even worsen at times.
3. How did you feel when you were first diagnosed? What was the first thing you did?
The doctor examined me and then told me I had something very serious. He told me that I had a nerve disease that is incurable and that I would need to go home and get back in my wheelchair because I would be in terrible pain the rest of my life and my leg would never work properly. He said I would probably not be able to function properly in society as a normal person and always be handicapped. I was devastated and any excitement I had about all the progress I had made was completely zapped. So I left his office and went straight to physical therapy. I told my physical therapist that I needed to work out harder than I had been. I cried through the whole workout from pain, but I did it, and I haven’t stopped since.
4. What advice would you give to someone who is chronically ill but undiagnosed?
I would say don’t isolate. Reach out. Keep doing your research.
I went through so many emotions like fear, anger, frustration. At first I was embarrassed and then I was in denial. I made the mistake of isolating and I don’t recommend it. Once I started reaching out my entire world changed. I not only found out more answers, I found some fellow warrior friends. I was able to talk to my tribe of warriors and come up with solutions about doctors and treatments. Most importantly, I was supported in this whole baffling journey.
5. Has your chronic illness changed your perspective and if so how?
I have always been compassionate towards people with disabilities, I think the main reason is because I grew up with a disabled little brother. But going from an extreme athlete, professional dancer and fitness trainer to someone who owns a handicap placard definitely changed my perspective. I focus on what I CAN do instead of what I can’t. I don’t ever take being able to move on my own for granted. I am so full of gratitude for my health, my family, my friends, being able to go to the beach, being able to walk outside, being able to walk, fresh air and I could increase the list at infinitum. I have had to learn to have compassion for myself without any self pity.
6. What moment are you most proud of in your chronic illness journey thus far?
I have a few proud moments and I think one should definitely celebrate those moments for sure!! Sometimes they are few and far between and it often feels as if you are walking through quicksand carrying a heavy backpack when you are battling chronic illness. I think my proudest moment was the moment I decided to own my story. I truly accepted what I call my new normal and started to share about my illness and try to change the narrative about CRPS from being called “the suicide disease” to something more positive and hopeful. When you own your story, no one can use it against you. I started to heal emotionally, spiritually, and then started to feel better physically.
7. What was you hardest (or lowest) moment, mentally and/or physically, that you’ve been through on your journey?
About a year after my accident when doctors had miraculously saved my leg, when I only had a 1% chance of saving it from amputation, and about six months after being diagnosed with CRPS, I felt so much hate for my leg—and hate is a four letter word in our family. I hated the pain it gave me. I hated that it didn’t work properly, and I hated that it prevented me from doing all the things that I wanted to do. I felt it had a mind of its own and was stealing my freedom, my joy, and life as I once knew it. I was so focused on the pain and what I used to be able to do, I was spiraling down into a sea of hopelessness. I asked the doctors if they would cut it off. I was desperate. Thank goodness I had a doctor that knew much more about the disease than I did. He explained that it came from my sympathetic nervous system and even if they amputated my leg I would still feel the pain. Although I left the doctor’s office feeling hopeless, I had both my legs. I was then forced to sit and really feel all those feelings and knew right then and there I had a choice. I could either be depressed and resentful or I could figure out a way to find some light at the end of the tunnel.
8. What or who has helped you the most during the lowest days?
I got out my journal and started making a gratitude list. When you are grateful you don’t have time to feel sorry for yourself and it is like taking an instant happy pill. I stopped being so stubborn and stopped trying to do everything on my own and learned to ask for help and accept help. I surrounded myself with puppy uppers and got rid of any doggie downers in my life. I surrendered to the pain and turned it over to my higher power. It was much too big for me to handle on my own. That’s when my life started to change.
9. If you had any words of advice for someone struggling with a similar diagnosis, what would they be?
Listen to your body, and learn to rest not quit.
Easy does it.
One day at a time.
Practice ways to love yourself.
Stick around those who feel like sunshine.
Get a third opinion.
Don’t believe everything you see on the internet.
Trust your gut.
Do everything you can to be the healthiest you can be. I changed my eating and it changed my life. Everything we eat is either working for us or against us.
10. What would you like the world to know about life as a chronic illness patient.
I have always heard that quote “Everyone is fighting a battle we know nothing about. Be kind.” Just because someone does’t “look” sick, doesn’t mean they aren’t sick. Kindness goes a long way, and a deep, fulfilling, authentic connection to others is the key to happiness. In my book, True Grit and Grace—Turning Tragedy Into Triumph, I share my story of perseverance and the true meaning of resilience. It is my hope to spread hope and awareness so we may someday find a cure.
By Amberly | @amberlylagomotivation