CRPS and The Taste: The Story of a Nerve Pain Warrior

Did you know that I suffer from one of the most agonizing nerve pain conditions on the pain index?

Read my story below about my experience on ABC’s The Taste and hopefully you get inspired no matter what disability you may have, including sciatic nerve pain and diabetic nerve pain.

CRPS Diagnosis

Two years ago, after a surgery to repair my right hand I was diagnosed with CRPS, also known as RSD it is the most painful nerve pain disease on the McGill Index. Daily nerve pain from CRPS is greater than natural child birth, yet thousands of people suffer from this invisible disease daily.

The disease started in my right hand and in the last two years has spread to my entire right arm, lower back and both right and left legs. I’m lucky in that the physical attributes of my CRPS are minimal. Often people’s joints become extremely swollen and purple, I’m lucky in that the swelling has not been an issue for me. The scars on my wrist often turn purple, but that’s nothing a pretty bracelet can’t cover.

McGill Nerve Pain Index
This is a McGill Pain Index Chart. It is what doctors use to measure and compare pain. The higher the number, the greater the pain.

This horrible disease claims more lives to suicide than any other cause of death, and why is that? First the pain is excruciating, it feels as though you’re sitting in an electric chair with bolts of electricity running through the infected areas. More importantly I believe so many patients give up due to lack of support. Lack of support from their families, friends and community.

Because it’s an invisible disease CRPS patients are often criticized by those who don’t “see” their pain. I used to have a handicap placard for the days my legs were exceptionally bad, but I stopped using it after a woman came up to me and my daughter after parking in a handicap spot, she cursed at me asking why I would steal or borrow my grandmother’s handicap placard. This in front of my child! The woman was horrible and since then I would rather suffer in silence or skip leaving the house all together on painful days. Imagine what these words would do to someone on the brink of giving up.

Even family members who have known of my disease for two years forget about it and ask me to explain all over again at family holidays. However I’m extremely lucky, I have an amazing support system in my immediate family and close friends. Without them I would have lost hope long ago.

The Taste on ABC

So needless to say when I applied for The Taste I had no intentions of sharing my disease with my cast mates, I was worried that they would not believe me or assume I was looking for special treatment. I spoke with my doctor and got clearance to compete and went through a round of procedures called nerve blocks to numb the infected grouping of nerves in my right arm and left leg so that I could compete, hopefully without pain.

Audrey Johns on ABC's The Taste Nerve Pain WarriorI assumed, after being a fan of The Taste season 1 that we would cook for a couple hours a day, something I was already able to do at home. So with high hopes I invested in some comfortable flats and packed my bags, eager to show even a CRPS Pain Warrior could achieve her dreams and I jumped on the train to Hollywood.

When I arrived on set the first day I was feeling good, my nerve blocks were doing their magic and I was excited to get in front of the camera. I walked on the beautiful set and was so in awe of all the lights, cameras and cooking stations I was excited and ready to get the party started.

Then we started what the entertainment industry calls “hurry up and wait”. What I thought would be a single two hour cooking day became three 18 hour days, far more than what I was used to. Lots of standing around on concrete and sitting in cold metal chairs. My body quickly started to give out.

While other contestants went out for dinner and dancing at night and on days off, I was holed up in my room taking long soothing baths and sleeping. The pain immediately started messing with my head, when you have level 10 pain your thoughts get fuzzy and concentrating can be difficult.

I knew I was in trouble when I nearly collapsed on stage during the second show. While Jay and I were facing the music and getting our red stars last week I was doing everything in my power to keep my legs working underneath me. Even slumping down to the ground in between takes. I didn’t want the other contestants to know so I just blamed it on my “bad back”.

I remember waking up the morning of the first day shooting for episode 3, I called my husband and told him I couldn’t do much more. I put in a call to my doctor and arranged an emergency nerve block procedure for two days later when I knew I would have a day off. Yes I said it, I was going to use my day off to get surgery so I could keep competing!

Audrey Johns on ABC's The Taste Nerve Pain Warrior
My producer Sean and I on the set of The Taste.

I told my husband if it came to being eliminated and it was between me and one of my team mates I would try to bow out gracefully, but only if it was one of my team members. I knew they all were physically up to the challenge, all I cared about at this time was that Team Marcus would win, and if I could sit on the bench and cheer them on that was good enough for me.

So when Sarah’s amazing dish was somehow picked as the least favorite in the team challenge, I knew it was time for me to go home. Forced to choose a person to go home my team members all said my name, I was relieved. I wanted to bow out but I did not want to “give up” so agreeing with them was the easiest thing to do. I would not fight to stay and take a spot away from one of my team members who could compete. For me it was a no brainier, I couldn’t take one of their spots for my own gain, in this moment it was all about the team!

Going Home

Gasps were heard when I agreed that I should go home, and my producer Sean was actually mad at me for not fighting harder to stay. I assured him I had my reasons and would share them in my exit interview. No one knew, not the producers, director or even my mentor Marcus knew I had been suffering in level 10 pain for 3 weeks on set.

When we sat down to do the interview I opened up about my disease, I had not shared it in the beginning because I didn’t want to be treated differently, but most of all I did not want it to come off as an “excuse”. I wanted to inspire other CRPS/RSD patients. I shared my story and quickly noticed that the gentleman in charge of sound was silently crying, he later told me that a family member of his has CRPS and what an inspiration this will be to her.

When I cleaned out my locker I left notes to all my team, telling them that I adored them and that there were no hard feelings, they still did not know about my disease. I told them to meet me in my hotel room for a champagne toast, I had something important to tell them.

Audrey Johns on ABC's The Taste Nerve Pain WarriorWhen the Green Team met for one last time that night I told them my story and told them I could no longer go on, even with the emergency procedure scheduled for later that week. The long hours were too much for my body to handle. They all felt awful for naming me to go home but I assured them it was all for the best. I told them how proud I was to be in their company and to be on their team and that I would be cheering them on.

So don’t be sad that I’m going home this week, I’m proud of what I accomplished and I hope to inspire CRPS/RSD Pain Warriors to stop saying “I can’t” and start saying “I’ll try” because it’s far better to try and fail than to never try at all… And keep watching The Taste, you may see me again later this season!

You should never let challenges get in the way of your dreams! – Audrey Johns

Nerve Pain and CRPS Awareness

There’s lots more in the works for this Pain Warrior, I refuse to let this disease define me! I will define myself and use my disease to inspire others. No matter your disability you can reach for the stars, don’t ever let your nerve pain or disability stop you from trying to achieve your dreams. My dreams of a cooking show are not lost, I now know my limits and will keep pushing until my dreams are a reality!  Watch out Hollywood, I’ll be back soon!

Lose Weight By Eating cookbooks:

            

22 thoughts on “CRPS and The Taste: The Story of a Nerve Pain Warrior”

  1. Audrey, I just heard you mention this disease on The Taste, and my ears perked up. If you don’t mind checking something out, there is a doctor in Illinois who treats RSD very successfully using prolotherapy. His name is Dr Ross Hauser and his website is caringmedical.com. If you search “RSD” on his website, you can see what he is doing. I hope this information might help you or someone else! Lesley

  2. Hello Audrey,
    I don’t know quite what to say as I can’t stop crying. I just watched last weeks episode of ” The Taste” and was floored when you said you suffer from RSDS. I  have had it since 1989. It has spread just about everywhere.  Reading about your experience just sounded so “painfully” familiar. Kudos for trying what you did. I have never felt comfortable with social media or reaching out to support groups. I do not know how to follow a blog even! But you kept mentioning yours, and after your revelation I thought it was about time I figure it out! It took a little while, but here I am! Thank you for telling your story. And thanks to those who shared other resources.

  3. My daughter 16 year old was diagnosed at 14 from a fractured foot. There is help out there. Research children’s hospital of Philadelphia and children’s hospital of Boston. We were admitted into Boston and  they were amazing. Good luck. 

  4. Hello Audrey,  Thanks for sharing your story, I am so excited that you did. You captured the “hurry up and wait” aspects of filming that people don’t normally see. I am so proud of you for doing what you were able to do and will continue to do. Thank you for raising awareness! I would love to talk some day. Keep up the good fight! Blessings, Barby Chairman, Power of Pain Foundation [email protected]   #SpotlightOnChronicPain #NERVEmber #RSDAwareness 

  5. Jasmine,
    I think custom awareness cases would be Awesome. My 15 year old daughter suffers with full body CRPS/RSD. I see the struggles she faces just to make it through each day. Wishing you all the best! The only way to
    Find a Cure is to continue to Raise Awareness as much as possible. 

  6. Audrey,
    I can’t Thank You enough for speaking about CRPS publicly. Your truly an inspiration! My 15 year old has been struggling with this monster “CRPS” for almost 2 years now. It truly has changed her a swell as our entire family. The little things most take for granted, are Huge things for my daughter. As her mother it kills me that I can’t always comfort or take her pain away. She’s had to learn how to walk twice. She was always a healthy, happy, active child that’s until CRPS came along. I wish you all the best! RSDSA is a wonderful site as well as Power Of Pain Foundation.

  7. Please don’t pursue any more invasive treatments. They are often contraindicated and may cause CPRS/RSD to spread.  Investigate the research and treatment being done by the Neurology Department at Drexel University in Philadelphia; they are cutting edge.

  8. Please contact RSDSA. hey have wonderful information and a great staff that can help you and your daughter . The organization is having a conference in Louisiana on February 16th that might be helpful too,

  9. Audrey you are such an inspiration to me. O was watching the Taste last night in tears already due to all the pain I was in from my RSD flare up and the SCS trial I just finished earlier in the day and then I heard your interview and it touched me even more. I used to have dream of opening a cupcake shop but due to ending up in a wheelchair because of this horrible disease we suffer with those dreams seem but a distant memory. I look at you and see that they shouldn’t be. Thank you for bringing awareness for this disease to a national stage. I am currently pursuing a new dream and an running a business making custom cell phone cases and recently got the idea to make some RSD awareness cases and I would love to make you one at no charge.

  10. RsdCrpsDoesntOwnMe

    You are an inspiration Audrey!
     My name is Christa Whightsel I am 26 and run a website called Rsd/Crps Doesn’t Own Me. You story beats to the heart of our message that there is life after diagnosis! We love to see you spreading healthy living and making others aware of Crps. Please please continue to make others aware of Crps and that we are strong individuals with iron wills that will over come the stigma of this disease.
    Would love to get to know you better and learn some tips.
    .Christa Whightsel
    http://www.rsdcrpsdoesntownme.com
    http://www.Facebook.com/crpsdom

  11. I am 20 years old and I have had CRPS for almost 3 years. It’s sometimes humiliating but I do use a handicapped parking placard. I’m in college and I can’t walk from the normal parking places without being really tired and in a lot of pain. People stare at me and often make comments, but I don’t have an option at this point in my life. Thank you so much for opening up about your CRPS. It is something that people need to know more about. You have inspired me to keep fighting and living my life. 

  12. Oh I’m so sorry! What kind of block? My first block did make the pain worse but each time after that one they lasted longer and helped more.
    They do take about a week to kick in for me, perhaps your daughter’s block will kick in, I sure hope so!
    Hugs to you and your Pain Warrior,
    Audrey

  13. My daughter 15 was just diagnosed. Had nerve block Monday! Made it worse! 🙁 going back for another one Monday! Very sad!

  14. As someone who suffers immense pain daily, I sympathize and good for you for going out there and at least giving it your all.

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