Caitlin's Battle to Fight CRPS

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Caitlin Alyssa and Sandra Freeborn are organizing this fundraiser.

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#CaitlinBattlesCRPS

"I feel like I am being burned alive while my skin is peeling off, while being stabbed with a jagged knife."

"I just want to live a happy, pain free life."

~Caitlin

WORDS FROM MY PARTNER

Our past two years consisted of endless visits to specialists, trips to the hospital, and traveling out of state consistently to find answers to the questions which no one seems to know. From numerous blood tests, MRI’s, CT scans, X-rays, and referrals from specialist to specialist, Caitlin was diagnosed by three separate doctors with Complex Regional Pain Syndrome (CRPS). Caitlin has gone through so much trauma physically, emotionally, and mentally since our car accident that took place on 08/30/19. This car accident was the traumatic event that caused her to be diagnosed with CRPS after suffering from multiple fractures in her left lower extremity. I am not only Caitlin’s partner, but I am the one that is on the outside watching her cry, scream, and fight to live everyday. For many of you who know Caitlin, you know that she is full of life, social, and would do anything for anyone. She may seem to live a normal life to everyone, but behind closed doors she is the girl screaming in her pillow, or on the bathroom floor because she can’t take the pain anymore. The hardest thing for me to see is when she is crying herself to sleep because the pain is eating her from the inside out. Ever since the accident Caitlin has suffered with PTSD which affects her every single day. Caitlin’s CRPS and PTSD doesn’t allow her to drive occasionally due to brain fog, nausea, dizziness, pain, she can’t focus, and she keeps seeing the accident occur as each car passes her. At night if she can get to sleep for a few hours then she is having a good night. Other times she falls asleep and wakes up screaming with her hands flailing and her heart racing with sweat beating down her face with tears. As her partner there is nothing that I can do besides hug her, kiss her, and tell her that everything is okay even though I know it’s not. She has battled severe depression, and pain-somnia for two years now. Caitlin has missed holiday celebrations, school functions, college life, and most of all she has missed having a close friend who understands her. She has now been living in flames for close to two years. The challenges that Caitlin has faced due to CRPS are innumerable. Her life has been controlled by pain and fear. A college degree, dreams, and most importantly “life” has been thrown away due to just trying to survive each day. What scares me the most is that CRPS is labeled the \
suicide disease. There are days where Caitlin is at her worst and she tells me she can’t take this pain anymore and that it's not fair she was given this path in life. As her partner I sit there behind walls of emotion and I can’t ever think of myself in her place. Life for her gets very dark and with your donation she may have a chance to live the normal life of a girl in her 20’s who loves to play sports, wants to finish her college degree and become a teacher, and wants to just be “normal” again.

MY PAIN

My CRPS started in my left foot, but now has spread up my left calf to my left knee and thigh, and unfortunately made its way to my left arm/hand. Basically its my entire left side except my abdomen. All of the locations of my CRPS are debilitating, but the pain in my left foot is the most excruciating. There are days that if I move my foot a tad, or put any pressure on it at all I cause an instant flare and my foot feels broken just as it was the night of my accident. For me I have favored my right side for the past two years and now since the CRPS symptoms have mirrored my right foot there are days I can't compensate to even walk. I have a house scooter to be able to get around and help myself at some daily activities like prepping food, or getting to the bathroom. Simple tasks that people take advantage of like taking a shower, brushing your teeth, and getting dressed are the hardest for me. I have to sit on the floor or lay on my bed to get dressed most days. When taking a shower I have to sit in a chair, on the shower floor, or lean my left leg on the side in order to just take a quick shower. When in the shower I always cause a flare up so that is a setting that I fear. On a scale of 1-10, my pain levels never dip below a 8 and my FLARES stay at a 9-10+ level. When my pain reaches 8+, I am completely incapacitated. I am not able to move at all, talk, or barely breath because I am crying hysterically in pain as my body burns alive. I rely on assistance from my partner, my ESA Nala and my partner as I can’t complete any task on my own. My scooter and crutches have become my best friends, and I am fearing a wheelchair as my future as my CRPS is spreading unexpectedly fast into my other limbs. For people who may see me walking or may think that I look normal, you can’t judge a book by its cover. As I stand in a shoe or sock just remember that it takes me all of my strength to shove a sock or shoe on my foot to be able to go in public. The whole time I have my foot compressed against the sole of a shoe or a sock or even a pair of pants, my body cries on the inside and I just push through the battle to be able to get out and try and live. My whole world is simply living in a bubble as I can't hurt myself otherwise it will spread, or I can’t eat normal foods because I will have a flare, or I can’t jump or I will collapse. It's all a horror story behind closed doors. My lower extremities feel as if they are being set on fire with lighter fluid. Think about that for a second.....I just want to go back to my normal self without 9/10 pain on a daily schedule so that I can return back to college and become the teacher I have been dreaming about being. It’s all about learning how to cope with my pain and at a young age I shouldn’t have to worry about pain or fear or not wanting to live any longer.

DIAGNOSES

I was diagnosed with CRPS in 2019 after being involved in a severe head on car collision. CRPS occurs after a traumatic injury and is caused by a dysfunction of the central and/or peripheral nervous system, severely amplifying pain in the affected area(s). CRPS, nicknamed the “suicide disease,” has a rating of 46 out of 50 on the McGill pain scale (rating higher than amputation and cancer). CRPS usually starts in one of the four limbs but can spread to any part of the body, including internal organs. There is no known cure for CRPS. In addition to CRPS I suffer from PTSD, MCAS (Mast Cell Activation Syndrome), as well as depression on a normal basis. The combination of CRPS, PTSD, MCAS, and depression intensifies all of my symptoms.

FROM CAITLIN

“All I want to do is laugh again without having pain in my mind”. I want to be able to attend family gatherings without CRPS and my pain always coming up in conversations. I want to finish my college degree in Early Education and Childcare (B-6) and show other warriors that remission is possible. I want to be able to run again with my dog, and to simply be happy again. I want to be able to wear normal clothes, and find a nice pair of new shoes that girls my age wear. I want to be able to drive again without fearing for my life at every moment. I want to live free from pain and live free from the idea of not wanting to live anymore. I want to be able to bring laughter instead of pain to my family as I did when I was a child. I want to think of other things besides CRPS, doctors, or pain which consume my everyday life. I want to be able to go to sleep without fearing to wake up the next morning. I want to become a girl in her 20’s who is racing towards goals, and being able to just be myself. I want to be FREED FROM THE FLAMES.

HOPE

I have been to so many specialists who have prescribed me lists of hard core addictive medications and all have failed. All medications prescribed to me were opioids where I have not been fond of due to their addictive symptoms as well as turning me into a zombie and not having any relief for my CRPS symptoms. I have been researching so many other options from therapies, to treatments, and surgeries including originally signing myself up for a DRG stimulator trial. I backed out of that trial as I read into the stimulator and how it can cause the CRPS symptoms to spread as well as cause further complications. I have a holistic practitioner who ahs helped me treat my body from the inside out and lower inflammation in my body. By eating healthier and taking daily supplements I have been able to keep some inflammation at bay, but unfortunately it is not enough. I have tried PT four times and no one could help me. I have tried a chiropractor and that didn't help. I am currently continuing acupuncture as that helps me relax, and cope with pain in other areas as well as fight my depression and migraines/brain fog. My last hope is at the Spero Clinic in Fayetteville, Arkansas. Targeted therapy is used to reset the central nervous system, which reduces pain and increases mobility in many CRPS patients.

SPERO CLINIC

The Spero Clinic is a medical treatment center in Arkansas that uses a unique holistic approach to treat neurological diseases such as mine, CRPS. Treatment at the clinic is from Monday to Thursday all day from 9-6pm. This treatment takes place for over 15+ weeks, where a team of specialists in CRPS will be dedicated to my unique case and will guide me through multiple therapies daily which are designed to reset the central nervous system. This will reduce my pain while improving my physical mobility and stamina. Many CRPS patients are reporting remarkable improvement through these treatments. It is the only clinic offering these specific treatment methods worldwide.

NEEDS & EXPENSES

The Spero Clinic program is NOT covered by insurance and there are no payment plan options. My partner and I as well as our two dogs will be traveling from NY to Fayetteville, Arkansas at the end of December 2021 so that I can start treatment in the beginning of January 2022. I am not only moving my whole life to another state, but my partner will also be putting his life on hold for 3-4+ months so that I can have a chance at a better future. My mother will also be traveling monthly from NY to assist in house chores, grocery shopping, transportation, and being an emotional support for me while I am at the clinic. When at the clinic many who don’t know about the work they due many feel that it will be a vacation or a spa day, but every day between 6-8 therapies a day I will be fighting through higher pain levels, and regaining my health back. It is not going to be an easy battle as I know, but with your help at least financially I won’t have to worry about getting there for treatment in January 2022.

The money I am fundraising will go to the Spero Clinic Treatment Plan, my living expenses while at the clinic, as well the equipment I will need to buy to keep my body in remission.

This is my last hope at battling CRPS, and I invite you to watch the following videos to see why the Spero Clinic holds my future.

EDUCATIONAL VIDEOS:

Finding Hope https://www.youtube.com/watch?v=ZIk9dbn0auM&feature=youtu.be

Feel free to visit Spero Clinic Website https://thesperoclinic.com/services/

Feel free to watch CRPS "The Most Painful Disease Known to Humans"

https://youtu.be/zZhWVEn4uHU

Social Media Pages:

Instagram: fighting_against_crps
Website: www.fightcrps.com
Facebook: Fighting Against CRPS

PHOTO GALLERY

Photo of the car accident that I endured on 08/30/19 which was the cause of being diagnosed with CRPS, as well as PTSD and depression.

What CRPS looks like on my lower extremity. FLARE WARNING

This is a recent photo of me visiting the clinic in (May 2021) Fayetteville, Arkansas before making my final decision to enter their treatment as my last hope at life.