Wendy Li

Navigating Lifelong Pain Nexus Helps Prepare for Diabetes Management

By Sara Walsh

A PAINFUL FOUNDATION

Following a car crash in Wendy’s early 20s, operations on her jaw to treat her injuries left her with intractable, severe neuropathic facial pain. She also has experienced long-term pelvic pain from endometriosis. At 40 years old, while undergoing a screening for an implanted neurostimulator to treat that pain, a scan of her abdomen and chest revealed cysts in her lungs. She was diagnosed with lymphangioleiomyomatosis (LAM), a rare lung disease primarily affecting women. Her doctor told her she had only three to five years to live.

This news was more than Wendy could handle: her self-care routine fell by the wayside, and she became severely depressed. She spent days in bed and used food to cope with a relentless vortex of psychological pain. Her son was dealing with mental health challenges as well, giving her another major issue to worry about. “I started eating ice cream all the time,” Wendy shares. “Food was the way I comforted myself. I only had three to five years anyway. I didn’t care what it was doing to my body or my health.”

She believes that her ways of coping during this dark period led to the development of her diabetes.

A FAMILIAR NERVE PAIN

About a year after the diagnosis of her lung disease, Wendy was diagnosed with type 2 diabetes. Initially, she was crushed by the new diagnosis: “I felt defeated. I cried. But at the same time, I felt like, ‘Well, I did this to myself.’”

When the first medication she was prescribed failed to help, she began taking insulin. About a year later, Wendy started to experience a sensation she knew well: an electric-shock type of pain, but this time in her feet and hands rather than her jaw.

Her doctor confirmed she was experiencing diabetic peripheral neuropathy (DPN), a type of nerve damage caused by high blood sugar that may affect the hands and feet of as many as 50% of people with diabetes. This pain often prevented Wendy from sleeping and made any activity where she needed her hands and feet more difficult and sometimes even impossible.

For example, the nerve pain took away her favorite hobby, baking cakes. The burning sensation in her hands meant she could no longer pipe decorative icing onto cakes, a painstaking and precise process. “It hurts really bad,” she explains. “Now I just do cakes twice a year—for my niece and nephew.”

In her earlier years of living with DPN, prescribed opioids helped with that pain, which she recalls “gave [her] enough relief to do what [she] needed to do.”

Then a new crisis hit. Wendy’s son, who was diagnosed with bipolar disorder, attempted to take his life. While spending time with him at the hospital, she delayed refilling her medication and inadvertently violated the pain contract she had signed with her pain medicine doctor. Not only was she blacklisted from that doctor, but she found having that mark on her record meant she was unable to find another pain clinic that would accept her as a patient.

Eight years later, Wendy still does not question her choice: “I would do it again in a heartbeat. That’s my son. I didn’t know if he’s ever going to wake up. He’s on life support. I’m not leaving his side.”

CREATIVE PAIN MANAGEMENT SOLUTIONS

More than a decade after being diagnosed with LAM and given only a few years to live, Wendy is still here. Now that she knows she has more time, she has begun focusing intently on what she can do to address her diabetes and DPN.

She feels emboldened to do what she can to improve her life: “I started hyperfocusing on my [blood sugar] numbers,” she shares. “I have so much pain going on, so many different symptoms, but with diabetes, it was something I could dig through and investigate.”

Today, Wendy gets in her cardio by biking at the gym at least five times a week, packing two oxygen tanks in her workout bag—necessitated by the tumors in her lungs, a symptom of LAM. She finds the exercise keeps her blood sugar levels down and softens her nerve pain.

She says her husband, Peter, is a tremendous emotional support. He has even offered practical remedies that she uses regularly, such as Chinese analgesic patches and reflexology sandals with acupressure balls on them, which act as pressure points to relieve the burning.

Wendy also takes cannabis gummies when her pain is particularly intense, and she makes her own tincture of mashed cannabis and lotion to soothe the DPN pain in her hands and feet. Commenting on her individualized strategies, Wendy says, “Growing up [in a fundamentally religious environment] put very strict guidelines on me, and I had to put that by the wayside if I was going to improve my health. Cannabis isn’t voodoo; it’s one of my tools in my medicine cabinet.”

In place of cakes, Wendy has begun baking bread, and she also delights in finding ways of her own to make recipes diabetes-friendly. Providing her even more impetus to shift her diet is Peter’s diagnosis as prediabetic.

“Just to me, a lot of diabetic recipes are just ‘ick’ and don’t taste good,” Wendy explains. “Since I’ve been baking for 25 years, I decide what I want to switch out.” She smiles, showing her lightness of spirit, which is surely also a part of her alchemy for wellness: “I take a recipe, and I bedazzle it.”

Optimism is another essential element of her trove of remedies. Her creativity in managing her life and pain is ultimately what allows her to thrive today. In spite of the weight of DPN and chronic pain, Wendy laughs easily and often, showing the perspective she has gained.

Adjusting the nasal cannula that provided oxygen during a recent workout, she shares: “I have a crappy body, but I choose to laugh and enjoy life, count my blessings, and deal with it in my own way.”