This is Laura Jones. I’m writing this on behalf of my best friend, Lisa Wilkins. I hope through this CaringBridge Lisa receives the support and assistance she needs while she navigates her many health crises. Her story is complex and spans two decades.
Please see the start of her personal documentary here on You Tube under Lisa Todd Wilkins. Caring Bridge will not let me put the link here.
I met Lisa in 2010 when she was in the throes of an undiagnosed “chronic pain syndrome.” Horrific burning pain began taking over her body in 2002. I’ve watched her endure a multitude of diagnostic tests; including over a dozen MRI’s (the majority were of her spine, in addition to her neck, knee and shoulders) and a myelogram with contrast of her spine. She had multiple EMGs to test her nerve function, and various x-rays. She tried many treatments, including chiropractic, spinal decompression, multiple rounds of physical therapy, acupuncture, injections, and exosome therapy. Many treatments were not covered by insurance. The Exosome therapy was $6800 paid for by Lisa. All the medications and various treatments she tried failed.
Despite having a spinal nerve stimulator implanted in 2014 to stop the pain in her legs, Lisa would text me in the middle of the night saying she just couldn’t handle the burning pain. The painkillers and nerve medication were not touching the pain. Eventually, the pain was throughout both legs and feet, and moved into her arms and hands. Fasciculations (uncontrolled muscle contractions) and muscle weakness set in. Things were getting even scarier when she developed episodes of extreme cold spells and her body could not stay warm.
Finally, on August 5, 2019 after 17 years of searching, Lisa got her answer from two small skin biopsies taken by Duke Neurologist Dr. Yvonne Baker. Those confirmed that Lisa has Small Fiber Polyneuropathy (SFPN) and had lost 70%-95% of small nerve function in her right leg. Finally, a name!
Lisa turned to functional medicine in the Spring of 2021. A year later she had testing that showed a genetic disorder (MTHFR). These genetic “snips” result in her being malnourished. This significant nutritional deficiency causes her small sensory nerves to die. She is now on a multitude of supplements including many B vitamins, minerals and amino acids. These supplements have been the game changer for Lisa! The burning, stinging, stabbing, and electrical impulses have decreased significantly. It’s really quite a miracle!
Honor Health researching neurologist Dr. Todd Levine of Scottsdale, AZ told Lisa, “Don’t blame every health issue on your neuropathy” when she flew to meet him in February 2020. And boy, was he right! Lisa is still in significant pain not caused by SFPN.
The SFPN pain Lisa has endured for years concealed other medical problems. She could not feel what was going on underneath all of the burning pain. And in fact, medical professionals labeled much of the pain “neuropathy.” We didn’t know she was in such bad shape.
As a result, Lisa is facing two hip replacements due to hip dysplasia. The labrums at the head of each femur are detached because of the dysplasia. She also needs two foot surgeries for bunion repairs. There is also the possibility of surgery on both shoulders from partial tears and bone spurs. She’s in PT for her shoulders while she undergoes the hip surgeries.
The first hip surgery is December 19, 2022.
It will take most of 2023 for Lisa to undergo these four to six surgeries. She is currently covered by Medicaid and we hope that continues through 2023. Duke Charity will cover some of her post-op PT as the Medicaid PT will run out before the second hip surgery February 20, 2023. ***Update: medicaid has been continued for the family and the second surgery has been postponed to April 17, 2023- read Lisa's 2-20-23 update for details
I’ve worked with Lisa since 2012 at her small residential cleaning business, The Dirt Police. Given her trade, these surgeries will limit her ability to go to work consistently. We hope she is able to do a little work during the gaps between each surgery. Being self-employed there is no paid time off or disability insurance available. These financial obstacles will make it difficult for Lisa to continue to provide for herself and her family. Her daughters, Grace (20) and Ellie (18) are still living at home with their Mother.
I am seeking support for her basic needs. It is imperative that her mortgage continue to be paid. She must stay on her current supplements to combat the genetic failings and prevent relapse. Provisions for her utilities, gasoline, car insurance and maintenance, food, and hygiene supplies will need to be provided for her as those needs are not met through government financial assistance.
Helpful ways to assist include gift cards to Walmart, Target, Food Lion, Amazon (for supplements and specific food items), cash gift cards or cash, or paying a bill directly. I have created a Go Fund Me, however that platform charges a 2.9% transaction fee + $0.30 per donation.
Because of the magnitude of what Lisa is needing, I am working to secure donors whose gifts would be used toward a “Double Your Dollar” matching fundraiser. If you’re interested in helping in this specific way, please let me or Lisa know.
Tragically, Lisa just lost her beloved brother, Dean Cleavenger on Saturday, December 10th. This came as a huge shock to Lisa and her entire family. Although Dean battled colon cancer three times, he was a shoulder for Lisa to lean on. Dean’s health had been declining rapidly as he was recently diagnosed with congestive heart failure. Lisa thought she had time to complete her first surgery and then tend to her brother’s needs before the second surgery. Now she is grieving through these health crises without her most intimate fellow pain sufferer- her brother, mentor, and friend.
Despite this grief, I know she will continue her commitment to a proper diet, take doctor-prescribed supplements, and do her PT, once she is medically able to begin it. Lisa is a trooper! I am confident these surgeries will provide much relief for her. But it will not be easy. Not only does she need your financial help, whether large or small, she will also need emotional support from her friends via phone calls, texts, cards and visits.
Follow Lisa on the CaringBridge App or subscribe to CaringBridge email for updates. Also, Lisa is beginning her blog posts and website so please send her your email If you wish to follow her writing.
After her diagnosis, Lisa began sharing her story through her documentary “The Fire Within”. She wants to reach the afflicted with encouragement, support and education. She has a heart for the sufferer and those who love them. She doesn’t want another patient to fall between the cracks of the western medicine model. Watch her story here:
www.youtube.com/@lisatoddwilkins7368
You may need to cut and paste the link.
Please do not hesitate to contact me directly to discuss how you can help my precious friend walk through this difficult time.
Laura Jones 919-720-0196 mlecm99@gmail.com
Lisa Wilkins 919-801-9724 lisatwilkins@gmail.com
Please click on the “Ways to Help” section of Caring Bridge
Meal Train link: www.mealtrain.com/trains/9vyn2o (
http://www.mealtrain.com/trains/9vyn2o)
