A COMPELLING STORY TO CELEBRATE INTERNATIONAL CRPS/RSD AWARENESS MONTH

Tiffany's RSD Treatment Fund:  https://www.giveforward.com/fundraiser/4r93/tiffany-s-rsd-treatment-fund

Dear Nancy, 

My name is Tiffany Turner and I am 31 years old. I am the mother of one adorably brilliant and spirited two and a half year old daughter, Penelope and the wife of a talented and loving engineer, Eric. We live in Phoenix Arizona. My story is a bit long, but beautiful and transformative. Three years ago our lives were changed forever and will never be quite the same again. 

May 8^th 2011 was Mother’s Day, and I had spent the day doing what I had done for the past three Mother’s Days- volunteering at a local women’s shelter in a rather underprivileged area of Phoenix making over disadvantaged mothers and children so they and their families could have a professional family portrait taken. For many of them, it was the only family portrait they ever had. This Mother’s Day was particularly special for me- I myself was 8 months pregnant with my first child- a baby girl- and with the new life growing inside of me I was thrilled at the prospect that every Mother’s Day to come I would have my own daughter to celebrate with. Little did I know that in less than 24 hours the hope of that reality would be challenged. Eric bought me this red dress and locket for Mother’s Day that year. 

        

When police and medics arrived on the scene, they had to cut me from my seat belt, and immediately noticed I was extremely pregnant. My large belly was  crushed following day I was driving to a routine checkup after work. Rush hour traffic was starting, and I could see traffic in front of me beginning to slow to a stop. As I stopped, I looked into my rear view mirror and saw the truck behind me was not stopping. I was driving a small Honda Coupe; he was driving a large crew cab truck.  He hit me at 50+ miles per hour- my small car was crushed in between his truck and the truck in front of me. I later learned he was either texting or talking on his phone. He was cited and given a small fine. 

When police and medics arrived on the scene, they had to cut me from my seat belt, and immediately noticed I was extremely pregnant. My large belly was crushed into the steering wheel. They were asking me questions about the baby’s movement, if I could feel parts of my body- arms, legs, etc. Much of what happened was a blur, but I was pulled from the car and laid out on a stretcher, loaded into the ambulance and taken to the nearest trauma center. 

Being involved in a bad car accident that far into a pregnancy, the trauma unit was prepared to handle whatever situation both I and my unborn daughter were in at the time of arrival. My clothing was cut off, I was hooked up to fetal monitors, IVs were started- there were more doctors and nurses than could barely fit into the room. And in walked my husband…to see his pregnant wife, naked on a table, surrounded by doctors. I calmly greeted him, and much to the surprise of the medical team, I reassured him that everything would be okay. My daughter was starting to move and her heartbeat was gaining. She was reacting to the sound of his voice in the room. I would not need an emergency C-section, but my spine had been damaged. Very badly. 

Over the next month, I gave up on my plans for a natural birth. I had to change OB’s because I would need a cesarean and a specialized anesthesiologist and surgeon to accommodate the nerve and spine damage that had been done as a result of the accident. I mourned the loss of my “birth plan”, but a happy and healthy baby was what I wanted more than anything in the world. And so it goes. 

I also learned that shortly after her birth I would need to undergo surgery to correct for a completely herniated disc that was floating in my spinal column and causing severe pain and increased nerve damage. My daughter was born on July 14^th 2011 and was perfect in every regard. 

When my daughter was 6 weeks old, I went in for my first spine surgery. After this surgery, I was not able to lift my daughter for 10 weeks.  I went through months of physical therapy, while also continuing to work full time. One part of this story that I had not previously mentioned is during all of this, I was (and still am) supporting my husband through a PhD program. I was/am the primary financial support for our family, so without my income and my insurance, we could not have survived. I had to continue to work through the pain. When my husband was initially searching for PhD programs 2007, he chose Arizona State University, and therefore we left our family behind in Pennsylvania to start a new life in Arizona. 

On June 24^th our sweet Penelope suffered a series of severe febrile seizures that lasted nearly thirty minutes. We almost lost her that night. We spent the next week sleeping next to her crib in the intensive care unit and she made a remarkable recovery, but it was a terrible experience for any parent to go through. 

The stress was too hard on my already fragile spine and body, and less than a week later on July 2^nd 2012 I suddenly became paralyzed in my left leg. An MRI showed the initial spine surgery I had the previous November had failed and the disc in my lumbar spine had re-herniated. I had to have emergency surgery if there was any hope of me walking again. My daughter would turn one in 12 days. I was 29 years old. After the surgery, my neurosurgeon felt confident he had fixed the problem, but the nerve damage I had suffered was likely irreversible. I would not regain feeling in most of my left leg or foot, but I would walk again. 

We celebrated my daughter’s first birthday with an Alice in “One”derland theme.  Two days later, I fell paralyzed once again. Another MRI, yet another failed surgery. This time, I would require a much more serious surgery, with more serious risks. A lumbar spinal fusion. The surgery was performed on July 26^th 2012 and I blew out the candles on my 30^th birthday cake from a hospital bed unable to walk. Or pick up my baby girl. Or sit up to receive a hug from my husband. 

But I was determined to walk and be the mom that I had wanted so desperately to be for all of that time. In October 2012 I returned to physical therapy…But something was not quite right. My left leg would turn purple or blue sometimes after sitting or walking, and then it would burn- as if someone were holding a flame to it. I couldn’t stand to have the lightest sheet touching me, or even water in the shower. I returned to the neurologist, who diagnosed me with Reflex Sympathetic Dystrophy, or Type II Complex Regional Pain Syndrome (CRPS). CRPS is a neuropathic pain disorder and autonomic nervous system condition. It is recognized by the medical community as the most painful disease in the world, with a McGill Pain Scale ranking of 42. The pain, burning and external signs of the disease (color change, edema, and open sores) can spread from limb to limb, and as I have since learned in this past year, it can systemically attack internal organs such as the heart, lungs, kidneys, digestive tract, and most importantly the brain. There is currently no cure for CRPS. 

To be 30 years old with a one year old child and staring down the barrel of this type of diagnosis was absolutely devastating. My team of doctors immediately started trying to slow the progression of the disease by using a myriad of powerful medications, invasive nerve blocks, physical therapy, etc. None of these approaches worked. With the added stress of continuing to work and financially support my family, I reached a breaking point. From January – July 2013 I suffered from Pneumonia four times. I was diagnosed with Addison’s Disease- a cortisol production insufficiency. I have severe tachycardia. All while continuing to work as the Comptroller of a large farm in the Phoenix area. But all I could do up until September of this year was go to work, come home, sleep, and go back to work. My marriage was failing…I rarely saw my sweet baby. But why up until September you might ask?

In September I found my “cure”. It came in the form of a long researched and well-studied treatment protocol in the CRPS community that many of my fellow sufferers have been getting for over a decade. It’s called ketamine infusion therapy. In the mid-1990s research trials began on this medication and its uses on patients with “stubborn” CRPS. The results were astounding- over 80% found close to 90% pain relief. Insurance companies started paying for the treatments in the mid 2000’s. The drug itself is extremely cheap, but the method of administration and the fact that patients need to be monitored closely is what is expensive. 

My insurance company, Cigna, has recently denied my claims, despite approving this procedure for other patients like me. Medicare, Medicaid, Blue Cross Blue Shield, United, Aetna- they are all paying for this life saving procedure.  Not only has Cigna denied it once, they have denied it three times. I had to liquidate my 401(k) - all of our savings- to put a down payment on this treatment that has saved my life. My parents have also given all they can, but my dad suffers from Parkinson’s Disease and my younger sister who is 17 is about to start college next fall, and it is not fair to take from her college fund, although she has generously opted to delay starting to help pay for my medical bills.

 I have set up a fundraiser, but I just cannot get the word spread without more help. So far, I have only been able to raise $2,500 of my $30,000 goal on my own. My husband and I have reached a point of emotional and financial desperation.  With no family here in Arizona, all of the care for my daughter and I has fallen onto the shoulders of my husband. 

This is why I am reaching out to you.  Before my inpatient ketamine transfusions, my outlook was bleak. Afterwards, I have slowly been able to come off of my pain medications, be more active in my daughter’s life, and have a renewed outlook on life. November is RSD/CRPS Awareness month. 

 I desperately need the help of other spiritual warriors, truth tellers, and hope spreaders in our community to raise awareness and funds to pay for my treatments and help cover some of the costs our family have incurred to maintain our household expenses. 

Thank you for taking the time to read my story. I give permission to make my story and all correspondence public. 

Sincerely, 

Tiffany Turner,