Sarah get CRPS treatment

May 10, 2023

On December 17, 2011, I was a blushing bride, walking down the aisle and enjoying my perfectly planned Christmas themed wedding with our closest friends and family. The next morning, after awaking, we returned home to drop off our things and by the grace of God, we changed cars from the little Subaru hatchback to the big seven passenger Ford Explorer. Approximately 14 hours after saying our “I dos”, while driving towards the airport to go on a beautiful Hawaiian honeymoon, we were hit head-on, and our lives were changed forever. The other car crossed the center line, hitting us at approximately 110 mph of force, turning her car around, hitting our front end again and causing both vehicles to drift towards a hillside. I still praise God for changing vehicles that morning.

I remember the accident so vividly, but the moments/hours immediately following were so difficult that I will never forget. Because I was in the passenger side, I was the most difficult to get out of the vehicle. I remember being in excruciating pain all over, I remember the airbag knocking the wind out of me, I remember not being to move from the waist down and my right arm, I remember shivering because it was so cold, and the car was no longer working after the accident. I also remember the amazing firefighters and ambulance personnel that were helpful in getting me out of the vehicle, the ones that sat with me, so I wasn’t alone, the ones that took the time to allow me to use their cell phone to call my mom and let her know what happened. Once, I was extricated from the vehicle, I was taken to the nearest helipad and flown to Allegheny General Hospital in Pittsburgh. I was diagnosed with multiple fractures; the worst ones were in my lower back. I was plagued by lower back pain that radiated down my legs, I was on strict bedrest, and I was fitted for something called a Thoracic Lumbar Sacral Orthosis (TLSO). It was a large turtle shell-like device that I was to wear over my clothing. It was mostly to prevent me from bending or twisting. I wore that for several months, was gradually able to wear a softer brace for an additional few months; and then after eight long months, I was finally able to begin months of physical therapy.

I had become severely depressed, a mere shell of myself. I was unable to mother my children (I had two young daughters that I had adopted in 2010), serve as a wife, or even care for my own needs. I couldn’t ever return to nursing on a unit, and I had to quit nurse practitioner school, at least at the University of Pittsburgh, with only one semester left to complete. My new husband had to bathe me, dress me. My younger brother moved in for a couple months to help with the girls and the household duties. Others made meals, drove me to appointments and took the girls for treats. Once I was able to get to physical therapy, I found a new me, a different version. I even returned to work for a few months and returned to nurse practitioner school. But I had several setbacks. The first, was two weeks after the initial accident, I developed abscesses on my left kidney that developed in bruises from the accident; these abscesses were bad enough that they required IV antibiotics and subsequently a year of oral antibiotics to prevent spread and possible loss of the kidney. In January 2013, I required surgery to repair my collarbone that never healed initially. Throughout the next few years, I suffered through the pain, getting through with physical therapy, massages periodically and medications that helped with some symptoms.

After several years of infertility, likely brought on by the stressors of what my body was going through, we were able to do IVF and got pregnant with our sweet Catherine, but that caused so much added stress on my body that it was time to give in and I started pain medication for my pain. And, I had my second child (also IVF) 2017 causing even more stress on my body. I was able to complete nurse practitioner school, maintain a part time job working in pediatrics and I loved every single second of it. I worked there from 2014-1019. I continued to seek help for my pain, finally being diagnosed with CRPS, Chronic regional pain syndrome in early 2019. It was likely that it was initiated by the car accident, but it took 8 years to finally get the diagnosis. I had my spinal cord stimulator (to help slow the progression and help with the pain) placed that May and sadly, my condition has continually worsened since. I never returned to work after having my stimulator implanted and I have continued to have worsening of all my symptoms.

Since my diagnosis, my every decision has been based on how I’ve felt when getting up for the day, on the weather (cold, rainy weather is the worst), on how much I may have done/not done the day before, how little sleep I got. At one point I was struggling with falling from not sleeping in bed, but I would be falling asleep while standing and fall or I would just simply fall. I have had a concussion, broken my nose and caused all kinds of smaller injuries to my body. I also suffer from severe insomnia, neuropathy in all four of my limbs, occipital neuralgia which causes severe migraines in which I take 3 different medications and get semi-annual injections in my neck. The migraines are debilitating. My pain is debilitating. It is literally ruling my life and I am losing the battle slowly.

So, what is CRPS? CRPS is chronic pain condition that is separated into two sub-types, one that has an initiating trauma and the other that doesn’t. I have both types. Being that I had the car accident causing the lower body symptoms, the upper body symptoms are non-trauma based. It is also called the “suicide disease” because it is the most known pain in the field of medicine. I literally have pain in every part of my body. Some of my pain is a throbbing pain, like a toothache; some of it is like a burning. On the pain scale of 1-10, with 10 being when I was in labor with my daughters, I live in the constant state of at least an 8/10 pain. Some look at people like me and say, “you don’t look like you could be in that much pain”. But you learn to live with it, you learn to put on a brave face, to cope with your life being harder. I’ve also got a great support system and my faith. I wouldn’t have made it this far without either.

And now, I’m asking for help with the possibility of remission!! I was sitting on my phone one night, unable to sleep as usual. I was looking up CRPS treatment when I somehow (100% God-led) stumbled onto the Spero Clinic page and was blown away by the claims, the stories of these patients, by the number of news outlets that were connected to their website. I put it away and prayed over it and on Wednesday, May 3, I was led to book a Zoom consultation with their Dr. Katinka van der Merwe for Thursday. When speaking with her, she was just so encouraging, she believed that I could do this. I spoke to a former patient and the mom of a former patient. So very encouraging! I immediately put my deposit down on the treatment and I’m set to start at the Spero Clinic on July 19. And now it’s time to raise some serious funds. The average cost is approximately $50,000, including my treatment, housing, travel, food, etc. Unfortunately, insurance doesn’t cover much if any, but I will submit it to my insurance and see if they will cover it. I know this sounds like a lot of money, but my hospital bill with helicopter ride, just for the accident was $70,000. This clinic has been helping people with CRPS that have had it for 20, 30 and 40 years. I have the potential to get my life back, to be the best mom to my girls, to possibly go back to work! I would greatly appreciate any help, every little bit counts. When I raise this money and I get to the clinic, I promise to give it my all. I have so much hope for the first time in 12 years. Thank you from the bottom of my heart for any help, even if it’s prayer, as I will need many of those as well. God bless and again, thank you.

Sarah Girardi