Help Get My Life Back From CRPS "suicide disease"

Hi Loves. My name is Payton Elizabeth Speer, and this is the last place I thought I would find myself at 30 years old. In my parents' home, dependent on their support, in debilitating pain with an incurable nerve condition, and looking at a litany of expensive procedures ahead of me to GET MY LIFE BACK. Growing up in San Antonio, I learned the value of community at an early age and have seen the impact of community everywhere I look. I’m grateful for this home, and now at 30 years old, I am turning to you and my community for help.

As an independent nature-loving artist who was historically self-charged with spreading joy throughout the world, I moved from San Antonio, Tx to Jackson Hole, WY seven years ago, where I began to excel in my art career and discover new passions and hobbies. Throughout my life, I’ve struggled with various health issues, but with perseverance and determination, I always tried to live life to the fullest. That all changed on April 1, 2021, when a devastating skiing accident left me in excruciating pain and tears in my MCL, LCL, meniscus, foot, hip and a completely torn ACL. Due to underlying autoimmune issues, the trauma of this injury sparked an uncommon, incurable nerve condition called CRPS. (At the bottom of this is an explanation of CRPS as well as the other diagnoses for your reference.) It’s been a very long and painful journey for the last two years, and I wouldn’t wish this pain on my worst enemy.

In a generous attempt to help me find ways to heal, my parents have spent over $50,000 and are still paying off close to $19,000 to help me search for relief. I am so incredibly grateful to them, but the treatment I need in addition to what we have already done is incredibly expensive and unaffordable. My mother has Cancer and also has very steep medical and pharma expenses. Creating this fundraising site is not easy for me or my parents because we aren't typically asking for help but realize it's time we do.

Among the foreseen expenses are:

- DENTAL: The lack of circulation and oxygen levels in the blood have negatively impacted all my teeth and additionally I have a mouthful of amalgam which has caused mercury toxicity as well as 5 different places with residual jawbone infections. I have to go to a Biologic Dentist for them to remove the amalgam fillings, (which takes great care for the mercury not to be airborne). A full mercury detox will need to take place after the amalgam removal. The root canals that were recently put in also must now be surgically removed due to deep nerve infection. Lastly, my mouth is full of 8 new cavities that have developed within the past six months that the doctor can only explain by CRPS and lack of oxygenated blood flow. We are still quantifying these costs but believe them to be between $16,000-$40,000 depending on the final solution. This current solution will not guarantee a fix for the future or the fact that without proper oxygen levels, the infection and cavities could continue. I am CURRENTLY BOOKED for surgery on FEBRUARY 21, 2023.

- KNEE: While I did do full ACL reconstruction knee surgery 8 months following my ski accident, it only exacerbated the CRPS and did not heal properly and after over 100+ physical therapy sessions in Jackson and San Antonio I am in constant knee pain, walking with a limp and desperately seeking direction on how to fix it knowing any type of surgery is not desirable with CRPS. I have multiple doctors encouraging a spinal cord stimulator and or a pain pump which would be $15000 - $50,000 depending on insurance. This would be my last resort. I am currently doing PT every day at home trying to avoid another surgery while I navigate my next move.

- KETAMINE: The IV form of Ketamine is the only treatment that has given me part of my life back. The IV form is the only thing that brings consistent relief for weeks and costs $2200 - $4,000 per set of sessions depending on the longevity and where I am receiving them. The cost for a lower dose injection, which I have previously received 100+ times, ranges from $300 - $500 a session, but would only provide 4 to 48 hours of relief inconsistently. The IV treatment is a promising route I hope to continue on my healing journey. I started another infusion FEB 14 2023 in San Antonio and am hoping for relief from this.

- CRANIAL AND SPINAL CARE: I have developed a myoclonic jerk in my shoulder that can be painful and frustrating during big flares. After several x-rays, tests and MRIs, we discovered My neck is inverted leaving my spine far out of alignment and we are working to realign my neck with regular craniosacral chiropractic appointments. Additionally, I am doing my 3rd sitting MRI to determine trauma/ligament tears in my neck. With the first 2 MRIs, the spasms and lack of blood flow would not allow the images to develop. I cannot control the muscle spasms and I have been in excruciating pain every time we try to capture the image. I have been seeing a neck specialist who has determined that I hold an extra 16 pounds of pressure on the spine due to a lack of curvature in the cervical spine. A series of x-rays and tests also show possible torn ligaments. All of this is causing the bones in my neck to start fusing and has been causing a lot of pressure and pain. We are now trying to stop that by relearning how to hold my neck/head and adjusting the neck with a craniosacral chiropractor. We have spent over $2100 on these appointments so far and will be paying several hundred more for the MRI and appointments that follow. If the ligaments are torn as suspected, we will go to Colorado and have my stem cells removed and injected into my Cervical spine in hopes to regrow the ligaments. We will know the results of the MRI hopefully before the end of March. In the meantime, I will continue with my at-home exercises and adjustments.

- ROOT CAUSE CLINIC: This team of doctors, nurses, therapists, and nutritionists have been working together to find the underlying causes of my issues as well as to prevent the future progression of CRPS, POTS, EDS, and Adrenal fatigue. (All the definitions of these conditions are defined below) They do not accept my insurance. Root Cause also has modalities that are offered that assist in managing my symptoms as well as vitamin IVs. Here I use the Magnosphere, Red Light Bed, and Bemer Mat. This is $250 a month plus additional costs for all of the tests, and acute treatments and all of this is not covered by insurance. This treatment has given me a greater awareness of my condition allowing me to keep working toward remission.

- EAR: I have a history of cholesteatomas (growth behind the eardrum that grows toward the brain and must be removed) which require ongoing treatment. It is partially covered by insurance but typically costs an additional $100-1200 dollars depending on how many times I have to go in, my insurance that year, etc. My doctor also told me that I have a larger amount of air than normal in my left mastoid cavity. We found this information from a brain MRI taken after I have been experiencing a wild amount of pressure in my left ear and head in general. We are getting another opinion and I am currently using a Neti Pot and mouthguard to holistically help this situation, however, it’s still painful and uncomfortable and I am seeking out a new ENT covered under my insurance.

- PAIN MIND BODY COACHING: Currently I receive this coaching through a bi-weekly zoom call with Lin Health which teaches your brain new ways to process and respond to chronic pain, ($159 a month). I have learned an unbelievable amount about somatic tracking, the mind-body connection, and the importance of them both. After months of mind-body research, we have found that the best place to provide relief and reset the brain from Chronic Nerve Pain, is Bridge Recovery Health Recovery Center, whose tagline is "Restoring Life to Living". Bridge is an all-inclusive 21-day retreat in the desert of Utah for individuals with severe chronic pain intended to restore hope that is overseen by medical professionals and teach them to see their medical journey and life in a new light. I would give anything to be able to try this place as I have read several CRPS recovery stories from Bridge. The cost is $21,000 and it is not covered by Insurance but I would be insanely hopeful to try their program.

- NEUROFEEDBACK: A Non-invasive treatment that encourages the brain to develop healthier patterns of activity and pain coping. We have looked at several different options and offices to facilitate this, and it is not covered by insurance. I have not started this but would like to. I am told by my doctors it would be very beneficial. The average cost is $2600-$4500.

- ENDOCRINOLOGIST, RHUEMATOLOGIST, CARDIOLOGIST, GYNECOLOGIST, PHYSICAL THERAPY, ALLERGIST AND GENETIC TESTING, - Misc additional issues that CRPS has majorly affected. All of these doctors will hopefully be covered under insurance, but we will be doing additional testing and have more answers in these particular areas as we see these doctors over the next few months.

My CRPS has changed consistently since day one which has often made me feel like my body and I are constantly at war with one another. Everyday living is unbelievably difficult, but I am always looking for light and joy in the small things and the precious moments with friends and family. Normal things that I often took for granted, like being able to walk through loud and crowded areas, or being able to walk normally in general with feeling a stabbing all the way up my right side. My senses are constantly being overstimulated and this sensation is unpredictable, uncontrollable, and sensitive to several things including wind, rain, temperature changes and even noise. Contributors to this sensation can vary based on the weather, my flare levels, and a myriad of other things. I am CONSTANTLY learning new ways to manage the different sensations and symptoms that arise while trying to persevere and get my life back.

I need your help with this. I need help getting a hold of the financial burden that this has put on my family. My parents have always worked so hard to provide for our family, instilling a work ethic in me that I am not able to bring to life because of CRPS. I’ve always taken pride in my ability to work hard, save money, and find my passion through it all, but there are often days that I am in so much pain I can’t even see straight.

I cannot say THANK YOU enough for the emotional support to all of you who have been by my side and given love and support throughout this brutal journey. I have a lot of work left to do in navigating this new reality and becoming the best and truest version of myself through this eye-opening and life-changing experience. It has shaken me to my core but has also allowed me to see myself, my journey, and the world around me in a new way while simeltaniously growing and healing.

Thank you for loving me and helping me to find my life again.

With so much love,

Payton Speer, (better known as PayPay)

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DIAGNOSES for reference:

- CRPS, (Complex Regional Pain Syndrome), also known as "the suicide disease" is a malfunction of the nervous system. CRPS is characterized by pain that is greater than would be expected from the injury that causes it. My CRPS began immediately following my knee injury with my right big toe feeling as if it was in a vice, discoloration, and wild temperature swings of either feeling it was stuck in a glass of freezing cold ice water for hours or being burned in a fire. This incredibly painful sensation slowly snuck up my right leg and has now invaded my entire body.

- POTS, (Postural Orthostatic Tachycardia syndrome), Your body can't keep your blood pressure stable causing headaches, dizziness, heart palpitations, sleeplessness, and chest pain.

- EDS, (Ehlers-Danlos Syndromes), Frequent joint dislocation and degenerative joint disease as well problems with the autonomic nervous system, dysautonomia, hypermobility, abnormal scarring, and autonomic dysfunction, responsible for regulating body functions and fight or flight response.

- FIBROMYALGIA - A condition that causes pain throughout the body and causes fatigue, anxiety, sleep problems, depression and headaches. Researchers say it's a problem with the way the brain deals with pain signals.