Help Robin get her life back

“It’s just a wrist injury”, It’s just one surgery”, “Let’s do one more surgery”, “You’re going to have this for the rest of your life”. 35 surgeries later, 7 years of living with constant, agonizing pain, and life flipped upside down, Robin is fighting a beast called CRPS.

CRPS, which stands for complex regional pain syndrome, affects the nervous system and creates a pain that is 24/7. On McGills pain index, CRPS ranks at a 42 (the highest ranking). For perspective, CRPS ranks higher than both childbirth and amputation. Robin experiences this pain through never ending burning nerve pain. It’s nickname is “the Suicide Disease” due to how many people take their lives from the pain.

Although her arm has been through the surgeries, CRPS doesn’t always choose just one spot to torture. For many patients dealing with CRPS, their pain will mirror to the opposite limb, spread through the same side of the body, spread to all limbs, and/or can even spread to patients' internal organs. Robin is down 25 lbs due to suspected internal involvement, is dealing with chronis UTI’s, viral infections, brain fog, insomnia, along with a plethera of other symptoms and comorbidities including EDS (Ehlers Danlos Syndrome) and Gastroparesis. And as a mom and wife, this doesn’t affect only Robin. When Robin was diagnosed, her kids were 13, 15, 17, and 19 year old. For the past 7 years, Robin has pushed through the living hell of CRPS to be there as much as she could be for her kids, but CRPS and the “treatments” that the majority of the world knows to use for CRPS took a toll. After fighting with insurance to cover “the basics”, Robin has been through a plethora of treatments, including medication, ketamine infusions, bone stimulation, iron transfusions, stanling ganglion blocks, physical therapy. She’s been from doctor to doctor, fighting to find answers... and for seven years, this has taken over her life. But she is fighting to change that.

On June 14th, Robin started treatment a few hours south of Springfield, down in Fayetteville, AR, at a clinic that takes a whole different approach. The Spero Clinic, the only clinic in the world doing what they do, and offering real, obtainable hope to CRPS patients... but that came at a cost. Besides moving her life from one state to another to receive medical treatment for “The Suicide Disease”, Darin was involved in a life altering accident where he had a medical episode while driving his semi truck, 4 days before Robin left for Arkansas, leaving the family sitting with medical expenses for Darin, along with medical expenses for Robin at the Spero Clinic, where insurance denies coverage (more on that in a moment), and leaving Robin and Darin both unable to work. To say it’s been crazy would be a vague understatement.

But here we are, 6 months later, keeping up the good fight. The Spero Clinic is known in the CRPS community as “disneyland for CRPS patients”. If you can get to the Spero Clinic, you’ve got a foot in the door on getting your life back. Treatment consists of 3-11 appointments every day, working on rebalancing the central nervous system, giving your body the tools it needs to heal from within. One of the treatments that Robin does for an hour everyday is Neuromuscular Reeducation (NMR) with her therapist, Kacee. In Robin’s words, “Kacee, (she’s) really freaking awesome”, and is someone whose never left Robin’s side. Everyday, Robin and Kacee are working on regaining connections and retraining the brain and the body on how to work... correctly. They are working on compensation patterns, finding disconnects, repairing the disconnect, focusing on the whole body. To do this, Robin is hooked up to a unit that produces a current that moves 250 times a second... So basically, every movement Robin does, her body is doing the movement 250 times. It’s exhausting... a good exhausting.. A getting your life back type of exhausting. Robin also works with one of the doctors, Dr. B, to work on specific muscles creating excess tension, and they continue to make progress weekly. She also meets with Dr. B or Dr. Lauren twice a day, receiving adjustments that focus on the vagus nerve. She is feeling the stem, seeing exciting changes in NMR, making awesome progress. These are three of the many treatments working to get Robin back to being pain free.... but it comes at a cost. Because these treatments are considered “experimental” by insurance, insurance won’t blink an eye to help with coverage. With Robin’s CRPS severity and comorbidities, she has surpassed the timeframe she expected to be at the clinic, adding additional months on paying rent on a house out of state, weekly medical bills, (for both Robin at Spero and Darin in MO), and purchasing equipment that will keep her in remission when she finishes the program.

Robin’s goal is to leave Spero needing no more surgeries, no medication, and in remission! In her words, “you don’t realize it's helping, but it is..”. And we need your help to keep Robin going. She has given it all she has, and she’s going to continue to fight, but she needs your help to keep going. Take it from someone who gets to see Robin, day in a day out, fighting this beast with everything she’s got. CRPS is gonna lose this battle, we just need your help to finish the fight.

https://www.thesperoclinic.com/?gclid=EAIaIQobChMIzOGmgL729AIVFDKGCh1WIAfREAAYASAAEgIc0PD_BwE