I am Carla Fairchild. I am forty-seven years old, and family and fashion mean everything to me; they are me. They both are my love, my life, and my passion. Owning a tee shirt business was part of that passion, but being a parent is the most important job I will ever have. As parents, we are constantly doing for our children; loving, laughing and supporting.  Such is the life of a parent; however, life can change in all but a moment. One moment is all it takes for change to take over life as you know it. At a birthday party, of all times, that moment came for me… I know pain.

This is #myinvisiblefight with reflex sympathetic dystrophy.

In February of 2008, my daughter was invited to a birthday party for one of her friends. The setting of the birthday party was an inflatable play area facility. The massive provision was filled with a plethora of bounce-houses of all different sorts and sizes. The flood of children, parents, and I played, jumped, bounced, laughed, and sweat for hours. It really was a blast.  Smiles all around!

The party was wrapping up, and then the disaster came. In the basketball themed bounce house, I was making some “swish” shots. I jumped up, flicked my wrists, freed the ball and then… my foot stuck, and my right foot twisted badly. I let out a murderous scream. You could literally hear pain. My foot immediately started to inflate, and turned dark shades of purple.

Thankfully, my dear friend was there with me – a nurse –  and she took control of the situation. When we arrived at the ER, my (then) boyfriend, David, met us there. My foot did not look good. It was quite a grotesque sight. An amalgamation of color, flesh, and dilation; you could see pain. From the look of my x-rays, I did not break or fracture my ankle or foot. Just a sprain. Following standard procedure, I was put in my cast and sent on my way while advised to contact my primary care doctor.  He confirmed that I had a bad sprain. What a surprise! I was referred to an orthopedic who agreed that I was in a lot of pain.  Again, no kidding. I was feeling it! Thanks, Doc. As expected, I was instructed to ice, and was prescribed standard medication and physical therapy.  But the pain continued. Life became difficult for me to manage on my own at this point, so my mother came down to help.

Every fiber of my being hoped that I was wrong, but I knew that it wasn’t just a sprain. I wanted to “be fine within six to eight weeks”. Part of me believed these words, but I knew they were wrong.

I know pain. As a child there were times where I had pulled all of the ligaments in my left thigh. Because of a sinus infection, there was a time when the surgeons had to slice open my gums, and scraped away at the blockage of puss in my sinus. Because of a stomach problem, they sliced open my stomach to stitch my pyloric sphincter together so that I could digest food, but these paled in comparison; this agony deserved its own tier. I was lucky though, because in the past, at least those pains went away. This pain though, was a like a nasty creature and it just wouldn’t go away.  It was here to stay.

I met with my doctor again.  He said three letters to me, RSD.  These letters became the things of my nightmares. Thew would change my life, shape my future, exhaust my mind, and challenge my purpose.

As soon as humanly possible, I researched on every available Internet resource of what these letters meant, of what RSD was.

Reflex sympathetic dystrophy; there was no debating it. RSD was irrefutably what I had. I knew it. It wasn’t  “just a sprain”.

The RSD specialist I began to see started me on a series of lower lumbar shots, which were supposed to block nerves that could be causing my pain, but they didn’t work. I tried several different medications and forms of treatment, but they all failed to lessen the pain. Distraught and frustrated, I was passed off to another doctor.  He recommended another series of shots, but this time with Ketamine. Those failed too. Then, I was put on a spinal stimulator, and again, #fail.

During the stimulator treatment, I lived in fire. The slightest movement permeated with electric torture throughout my body, and my foot resembled road kill. Later on down the line I tried another stimulator, but with the same results- NONE!

Over the past 8 years, I have seen four RSD specialists.  I have had 23 injections. On one occasion I was even injected with fish poison! On top of it, I acquired another disorder stemming from my condition; Allodynia, which results in extreme sensitivity to touch. This is a level of sensitivity wherein the breeze of wind can be incapacitating at times.

Imagine what it would feel like to actually be told by your doctor that you were a failure.  Yep, at a follow up appointment, I was actually met with those chilling words, ” Carla, you are my first failure.”

These are words that cannot be forgotten. I was a failure? I was a failure.  I sure felt like it. My armor was cracking, and the fabric of my family was beginning to grow frail. I remember finding a file in my son’s room marked, “Top Secret Classified”.  He wrote: “I want my mom to get rid of RSD”. It is hard for me not to think about that day with a dry face.

On September 23, 2008, I wrote:

“The kids have been asking more and more when my foot is going to get better. I tell them I am working on it and hopefully soon I can get back to normal”.

When your kids are hurting, you hurt more. A child’s pain is a mother’s pain, and now their mother’s pain was their pain.  It was all backwards.  This is what inspired me to author When Can We Run, Dance and Play Again? I refused to kneel or succumb to failure; I took advantage of every available possibility of help. ..

• Acupuncture, Structural Energetic Therapy and Cranial Therapy
• Yoga, Cleansing Diets, Hyper Baric Oxygen Chambers and Laser Therapy
• Chiropractice, Calmare Therapy, and hypnosis

I paid for all of these out of pocket, but they too failed. If I gained any reward from these trials though, it was how to practice visualization, and breathing and relaxation techniques from hypnosis. If no doctor could help my pain I thought, at least I can learn how to manage it myself to some degree; as best I possible can. Sometimes no one can help like you can help yourself. The first step is to believe in yourself. This self-support would prove to be an important asset, for the next trial and change was to come.

Christmas is supposed to be the universal celebration of joy and smiles. The greatest time for family, bonds, and ease; a universal celebration of life. This is the holiday I was raised to understand, but one particular Christmas was a slight detour from the norm.  After most of the celebrations had died down and it was nearing time to sleep, the battle of pain inside me began to wage war throughout my body. That sadistic horror decided it was time for torture. There are many ways to describe struggle and pain, but words just cannot convey what I felt that night. I had lost. No one knew what to do.  My husband and family heard my uncontrollable cries and could not help but freeze in place and watch my agony. The creature of pain fluttered and flailed without rest. My family watched my foot contort and fasciculate uncontrollably. Knowing that the gentlest touch, the slightest movement could leave me bedridden, in tears for hours.  They watched my episode in horror.  It is a terrifying thing to be powerless, and powerless we were. My wailing cries carried throughout  the house; echoing pain. I refused to accept submission, and so I fought. Focusing on breathing and visualizing for several hours that Christmas night, the pain eventually subsided.

The strongest fight sometimes isn’t enough, and you just have to deal with it.  I have learned this and accepted that this is not failure; it is managing.  The fact that there is no cure; that I am forever burdened with this sometimes #invisibleillness is all consuming.  But accepting this reality, this new normal is me learning to cope; more and more as time goes on.  This is #myinvisiblefight.

RSD pain is very complex and can destroy you as a person.

Living with a chronic illness, losing my business, the side effects of medication, responsibilities, and the colossus of stress with these things can turn a person frail. People always acknowledge and compliment my perseverance, but sometimes it’s hard not to look in the mirror and see a shadow of my former self. Everyday is a fight. But I continue to accept, learn and manage. Most of the time it seems that I will aid myself more than any doctor ever can. The church, the people I keep by me, journals, music, fashion, and laughter are all things that help me be me; I am still Carla Fairchild, and no one else. These things make up #myarmy in #myinvisiblefight.

I can only wear a select amount of footwear. Just the wrong thread in a shoe could bring the storm.

I am used to confinement to my bed, my limp and slow pace, or even the oddity of fur boots in summer.

I have accepted that people who don’t know me will continue to accuse me of having no issues because I show no visible deformity. I say that I am used to it, but I am not being completely honest. One can never get used to these things. 

I’ve learned that it’s important to find and build community. In fact, last November – which is also the RSD awareness month – I went to the Madrina Fashion Show In New York City for an RSD benfit, where fashionistas and designers came together for RSD! It was a breathtaking experience.

Although the road is long and winding, I will keep moving forward. I refuse to abandon hope, and will continue to direct all of my efforts to spreading awareness about RSD.  I have found my purpose.  Maybe one day, I’ll be one of the reasons this rare disease is eradicated.  Maybe, when I leave this world, it will be  a better place than I found it. I believe that I am proof that no matter the obstacle, nothing can stop you, and that you will only be stopped if you let it.

Editor’s Note: Patient Worthy thanks Carla for her contribution to Invisible Illness Awareness Week.  We look forward to following her as she takes the world by storm in her fight again RSD and we will support Carla in all of her RSD Awareness efforts.