Help get me into full remission from CRPS

We are re-opening this GoFundMe in the hopes of raising enough money to send Erica back to the Spero Clinic in Fayetteville, Arkansas for a tune-up and further treatments on her upper body. Our goal amount is $10,000. On the GoFundMe page you will notice we have already received some donations. $20,000 has already been received and was put towards Erica's treatment costs at the Spero Clinic a year and two months ago.

After 22 weeks from beginning their program, Erica graduated in partial remission and left with equipment to use at home as well as lots of knowledge to help her manage her CRPS and life in general. This last year she has continued to fight hard, has been diligent with her home therapies and continues to hope for full remission, not to mention a cure. Erica also undergoes weekly NMR sessions with a trained therapist formerly from Spero, via zoom. Through those zoom sessions it's been determined that Erica's body has not healed completely from her last injury prior to getting diagnosed with CRPS, that being a whiplash injury from a minor car accident in 2017.

With that being said, today Erica's life is so much better than prior to any Spero treatments, however she still struggles and has not been able to return to work making it financially harder to get her back to Spero. All of their treatments, as well as the weekly zoom sessions with her therapist, are all out-of-pocket expenses and not covered by insurance.

We could really use your help! We will always believe that your past support, along with God's mercy and grace is what got Erica's life back! We are also ever hopeful that with your help Erica can receive these much needed treatments at Spero and gain the prize of full remission.

Thank you for taking the time to read this. If your heart desires, please consider donating if you are able to; no donation amount will ever be considered too small. As my mother used to say, "Every penny adds up". Our entire family also wishes once again to thank you for your past support and we hope you will continue to think positive thoughts and pray for Erica's continued healing. Note: Please also make sure you read the two updates from April 12, 2024 as Erica has written some things in her own words.

And...If you haven't already read the full story written over a year ago.....Please read below: 

Hello, my name is Kathy Stein and I am the mother of Erica, or "Rica", as most of her close friends/family members call her. Erica is 42 years old and for the past 6 years has been suffering from a rare, incurable neurologic condition called Complex Regional Pain Syndrome (CRPS), otherwise known as "The Suicide Disease.” They call it that because CRPS is chronic, complex (hard to diagnose/treat/manage) and is progressive in nature. The pain is worse than that of childbirth, amputation (without anesthesia) or any cancer and is #1 on the McGill Pain Index Chart. However, with CRPS there is no beautiful baby at the end, and nothing gives much lasting relief or end in sight, causing patients to lose hope and want to do anything to make the pain stop.

 

Erica's medical woes began at the age of 16 when she suffered a skiing accident causing her to undergo ACL reconstructive surgery. At that time Erica was an avid soccer player with hopes of going to college on a scholarship. Those goals were squashed as she didn't fully recover. After high school she relocated to Colorado and over the next 15 years underwent 5 more major knee surgeries which experts now believe is the cause of her developing CRPS. They call it the "perfect storm."

 

During this time Erica worked full time as a Vet Tech, completed an Associate's Degree in Veterinarian Medicine and then went on to complete a Bachelor's Degree in Biology/Chemistry. She lived a very free-spirited, adventurous life exploring the mountains of Colorado and the city of Denver with her dog, hiking, backpacking, skiing, snowboarding and attending music festivals and shows. Erica lived independently without any close family nearby and got through her knee surgeries like any true fighter would with the help of her close friend, Morgan who moved out there with her. However, Erica’s knee finally gave out with the only option left being a total knee replacement. Erica relocated back to the east coast to be closer to family and friends.

 

Within four months of Erica moving home, she was diagnosed with CRPS in March of 2018. For no known reason her toes on her left foot turned purple and black, were swollen and all she felt was extreme burning pain. It then quickly spread to her knee, then to her right leg, up her spinal cord, into both arms and now she is considered to have full-body CRPS.

 

Some days her pain is a level 4 but most days it's higher and too often it reaches a level 10. Even after seeing many doctors and specialists, including traveling twice to Cleveland Clinic, Rochester and Buffalo, NY, undergoing multiple nerve blocks, infusions, being on lots of medications and supplements, even having a spinal cord stimulator implanted twice, she has gotten minimal, short-lived relief. The medical doctors have nothing more to offer her.

 

To make things worse, starting in July 2021, Erica had 4 generalized tonic/clonic seizures (formally known as grand mal) and was hospitalized twice. It has taken months for her to recover and has intensified her CRPS symptoms throughout her entire body, some days even unable to get out of bed.

 

In Erica's words:

 

"To tell you what my typical day looks like, there is no typical for me. Mornings are especially rough. It's not unusual for it to take 2 or more hours lying on my yoga mat before I can get up and start moving around. I just can't get up and go.

 

I walk from my bed to the couch and immediately get underneath a heating blanket to warm up my frostbitten legs, giving me the worst falling asleep sensations in both legs that you could ever imagine. Bone crushing burning pain as my legs “try” to warm up. I need to wear wooly socks 24-7, even in the summer. I break out in body sweats, yet my legs still feel frostbitten, even at times feeling like I'm walking on glass with broken ankles.

 

I dream of pain, my hands constantly rubbing my feet and legs, even "in sleep" because I never really truly sleep. I wake up on average every 1-2 hours tired, yet have a hard time falling back to sleep, only for the cycle to repeat itself.

 

I feel like I'm suffocating from the inside out from the inflammation. My body is constantly in "fight or flight" mode, and I feel like I have pressure/swelling on my brain. Hard knots of fluid show up on random parts of my body and are extremely painful when massaged out. My knees feel like they are in a fire pit. Bee sting and sharp stabbing sensations happen anywhere on my body at any given time. At one point I even lost the use of my arms, not being able to hold my own silverware or cell phone or drive. Losing total independence. 

 

I try to keep up with my household chores but always need help from friends and family. Most evenings my parents cook for me and help out with laundry and cleaning. Even running a vacuum causes my body to go into extreme pain.

 

My body needs to take a lot of breaks throughout the day and social gatherings are almost impossible. The combined voices from people talking and laughing increase my pain. I try to hide it because they can't see it, I can only feel it, so I put on my fake smile. As time goes on, I then get emotional and need to isolate myself from everyone and everything and be in total silence and darkness.

Not many understand. Some people may think I'm "exaggerating or making things up.” The mental and emotional part on top of the physical pain of CRPS is exhausting. I truly feel all alone in the world.”

 

Erica's father and I have spent endless hours researching trying to find people to help her. On Erica's support group we came across The Spero Clinic, located in Fayetteville, Arkansas. The clinic, founded by Dr. Katinka van der Merwe, has a unique 14-week program - the ONLY one in the world designed specifically to help CRPS patients. Patients come from many different countries to seek their help. Their tools and techniques are holistic in nature and designed to enhance each other synergistically to restore balance to the central nervous system enabling the body to heal itself. With CRPS, the spinal cord and brain are malfunctioning, and so this approach makes sense in that the goal is to get to the root cause of the problem, not just put a band-aid on all the symptoms.

 

After 9+ years of practice and treating over 400 patients, The Spero Clinic has a success rate of 84.5%, which if you know anything about CRPS, that is HUGE and very hopeful. Each patient is given an individualized care/treatment plan based on the complexity of their case. Some patients may need extended time to meet their goal.

 

On September 20, 2022, Erica will begin her program as a patient at The Spero Clinic!!!

The cost for the program is a minimum of $50,000 with additional expenses for things she'll need after she leaves the clinic. Unfortunately, ALL costs for the program are not covered by insurance and will be an out-of-pocket expense. We will also incur living expenses for lodging, meals and transportation as well as needing to maintain her financial obligations at home. Erica is unable to work and only receives Social Security Disability Income.

 

The Spero Clinic offers more hope for remission and a better quality of life than anything else we have found.

 

What parent wouldn't do whatever they could for their child? Believe me it is both gut wrenching and heart stabbing to watch anyone go through what she does, let alone your very own child.

 

I hear my father/her grandfather say, "Keep the Faith,” which of course we will.

 

We're very excited that finally we will be in a place where everyone knows CRPS and understands it and what we go through. Reading and hearing their success stories and now having the opportunity to be part of a community of other patients and their families to talk with daily brings even more encouragement and hope to us.

 

To quote a former boss of mine, "There is no I in Team". Erica can't do this alone. Please join our #HopeforRica and donate what you can. No donation will be considered too small. Erica's had repeated dreams of "ringing the bell". As her parents, we pray for that day. We will never lose hope and will continue to believe that with your help, whether it be through donations or just thoughts and prayers, Erica's day will come!

 

Thank you for listening.

 

Kathy & Bob Stein

 

PLEASE SHARE, SHARE, SHARE THIS!!

#HopeforRica

Dr. Katinka van der Merwe @ The Spero Clinic 

 

 

 

This is NOT sunburn