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.
⭐️I strongly recommend you follow Lisa’s Caring Bridge so that you will be notified of any updates along her journey. You can choose an email notification or a text with the link to the specific update. Updates will not be more than once per week as we know your time is limited.😉
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 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.
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 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.
It took Lisa several years to pinpoint her hip pain was not the neuropathy. Lisa is facing two total hip replacements due to hip dysplasia (this means the hip sockets are too shallow). The labrums at the head of each femur are detached because of the dysplasia. She also needs two foot surgeries for bunion repairs.
The first hip replacement was December 19, 2022. The second replacement has been postpone four times due to medical complications from the first surgery. There are other medical tests that need attention prior to another major surgery. The left hip replacement surgery date is currently left undecided.
It will take all of 2023 for Lisa to undergo these surgeries. She is currently covered by Medicaid and Duke Charity Care.
I’ve worked with Lisa since 2012 at her small residential cleaning business, The Dirt Police. These surgeries will limit her ability to go to work consistently. 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 (19) are still living at home.
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 financial ways to assist include gift cards to Walmart, Target, Food Lion, Amazon, cash gift cards or cash, or paying any bill directly.
*April 2023 Lisa applied for food stamps and was approved.
Tragically, Lisa just lost her beloved brother, Dean Cleavenger on Saturday, December 10th- days before her surgery. 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. Now Lisa 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. 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.
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)
⭐️P.S. Please subscribe to Lisa’s page so we know those who want to be updated won’t be missed.
