Profile Information
Location
Bakersfield, CA
Country
United States
Postal Code
93307
What is it you do for a living? (Parenting, volunteering, CEO of social service organization, etc.)
I was an elite athlete + Olympics Trials Qualifier, a Top 10 Swimmer in the US for 10 years, a Gifted and Talented Student, a post graduate degree student, a professional educator working over 90 hours per week on behalf of at risk + low income children with learning disabilities, a lifeguard, plus a participant + an instructor and/or a coordinator of swimming, fitness, dance, yoga, + downhill skiing. I am currently dying of an incurable spinal cord injury + disease caused by parental physical child abuse. I was also subjected to repeated child sexual + emotional abuse, I was raped + impregnated while attempting to recover without medical care from a severe TBI w/ other physical injuries at age 19 plus a TBI at age 14 after my father wrote me a multi page letter wrongfully "blaming for for the failure of his marriage" followed by my parents damaging my bicycle brakes followed by them forcing me to ride my bike down steep hills until I was unable to stop the bicycle as it flew across 3 or 4 lanes of traffic + by head and body impacted with the median divider.
What organization(s) do you volunteer or work for?
I'm homebound, bedbound or recliner bound, existing in severe to excruciating chronic severe pain with the willful withholding of the primary + specialist - includling palliative care - which I've repeatedly been referred to receive, diagnosed w/ yet more of already numerous medical conditions which will never get better +/or will continue to get worse from early onset "severe spinal stenosis, severe DDD/DJD, sciatica, neuropathy, radiculopathy, carpal tunnel syndrome, fibromyalgia, spinal cord injury/myelolamacia, Hashimoto Autoimmune Thyroiditis, failed cervical spinal surgery, post lumbar surgery massive disc ruptures from 4mm to 15mm at L4-L5 and 7mm to 10mm at L5-S1, patient dumping without any advance notification or any notification at all by the responsible orthopedic neurosurgeon, permanent widespread nerve damage, recurrent + multiple potentially deadly infections which would or will not respond to treatment after over 16 months which led my primary care physician of 22 years to become physically and verbally abusive to cancelling my appointments to requiring that I be brought over 6 hours one way to request a medical appointment in person which I could not physically or financially do to leaving me waiting over 10 hours after my scheduled appointment time to see him to then refusing to provide any medical care as he yelled at me that I was wasting his time + he falsely claimed that the "reason" he "couldn't successfully treat me" was "because I have (not existent) fat hanging off my legs!"
This so called "primary care physician" then stopped refilling my RX scripts + then falsely claimed I had "found a new primary care provider" even after to his billing clerk, whom he had write the email, which reported this same primary care provider refused to provide medical care or to provide any prescriptions to me without any prior written notice or the provision of at least a 90 day supply of each of my medications as required by the CA State Medical Board. This same primary care physician continues to be on probation for the death of two of his patients and he has willfully + repeatedly refused to meet the terms of his probation.
This primary care physician abandoned my care after certifying that I required live in 24/7 care. He also failed to refer me to palliative care or to provide pain relief from the excruciating pain, he repeatedly tested me + treated me incorrectly for GYN infections + UTIs which would not resolve for more than 16 months because the unmanaged + uncontrolled excruciating pain had caused me to further develop Addison's Disease and Chronic Regional Pain Syndrome, to continue to lose my already limited ADLs including the ability to bathe or to shower even with assistive + safety devices while the primary care physician willfully + repeatedly chose to inflict emotional and physical abuse of multiply medically disabled and dying patient.
I participate in a variety of online support groups seeking and offering information + emotional support as I am medically + physically able to do so. I continue to be denied to primary care + specialist care - including but not limited to neurology, pain management, and palliative care - often on the basis of disability or the admittance of over 83% of "doctors' in the USA to treat disabled patients in care in person or by telemedicine during the USA Pandemic. I have been medically isolating at home since March 4, 2020, except for an EMS call + hospital ER care for an allergic reaction + asthma attack two weeks after one of my legs suddenly collapsed (aka "went out on me") which caused me to fall + twist my feet, ankles lower legs, + knees under a shower door as I had been holding onto a shower safety bar with one hand and a worn out follator walker which my boyfriend had been forced to push me on for over 1.5 years in the absence of an indigent clinic physiatrist specialist wheelchair which would support my head, neck, upper body, back, lower body plus elevate my legs.
No such wheelchair has been provided to me, but Medicare continues to be billed for a wheelchair which doesn't meet the physiatrist's documentation of these medical, patient safety, + patient continued existence needs which further included referral to the indigent clinic palliative care specialist and indigent clinic pain management specialist who refused to treat me on the basis of disability or to comply with the 1964 Civil Right Act, the 1994 Americans with Disabilities Act, and the 2020 Presidential USA Pandemic Mandate to treat all patients at risk for COVID-19 by telemedicine or to to comply with the DEA's Waiver or the CDC Opioid Prescribing Guidelines for which I was confirmed to be exempt from on both exemption basis. I have been referred by specialists to four additional palliative care specialists who gave discriminatory reasons for not accepting me as a patient despite their acknowledgement of my on-going qualification and need for palliative care.
I was near death last year when my established asthma, allergy, and respiratory specialist suddenly refused any medical care, treatment including the provision of RXs, and referrals to fake +/or non-existent or confirmed as needed but refused "on the claimed basis of our prerogative to to do so" COVID-19 testing plus medical care and treatment for acute bronchitis, acute asthma, acute sinusitis, acute pneumonia, and confirmed symptoms of COVID-19. I continue to experience what are referred to as "Long COVID" symptoms plus chronic symptoms of bronchitis, asthma, sinusitis, pneumonia, + "Long COVID" without symptom resolution since March 2020.
What is your interest in PACEs and resilience science?
My father angrily carried me by my neck, with my feet off the ground, from the pool deck to where the car was parked every weekend from age 5 through at least age 8 when I was unable to swim every race each week faster than my best time which is impossible + unreasonable. The discs of my cervical spine are abnormally positioned, unstable, plus continuing to threaten to sever my spine which is soft from bleeding into my spine.
My lumbar spine which the orthopedic neurosurgeon used a medically contraindicated device which resulted in the "massive ruptures at L4-L5 and L5-S1 leaving only the width of 2 credit cards stacked on top of each other between those unstable ruptured discs and the spinal cord" per the primary care physician who then abandoned me instead of referring me to help he angrily was unable to provide to me but I needed. I abandoned me as I have continued to struggle to exist against the odds with the home assistance which my roommate - boyfriend of 8.5 years is able to provide without training or compensation.
If you're part of a community-based PACEs initiative, which one?
None at this time but I'd like to learn more; thank you.