I have a busy and fulfilling life: I teach writing classes, I mentor a young girl, and I volunteer at my local history museum. I also have great group of supportive friends. But it wasn’t always this way. I have struggled with chronic pain almost my entire life.
The first time I recall feeling pain, I was three years old. My bones felt like they were being crushed at night, and I screamed in agony. Mystified, my parents took me to many doctors, including more than a dozen specialists. The diagnosis? Hypersensitivity to pain, and hyperallergic to everything. They told my parents give me Benadryl when I had a painful “allergy attack,” as they called it.
Bu it was so much more than that.
Growing up in pain
By age nine, I had daily headaches. Benadryl and Tylenol barely worked. I couldn’t play outside with my friends because I got painful welts from the sun. My hip and arm joints ached constantly. A growth spurt at ten triggered more screaming episodes, so we went back to more doctors. Again, no answers.
My parents believed me, but by twelve, we still had no diagnosis, and I had shingles–twice. The doctor didn’t do any tests. He dismissed me with, “You’re the most stressed-out seventh grader I’ve ever met. Your problems aren’t that bad.” I felt defective and terribly alone.
After jumping over hurdles in P.E. class popped my knees out of the socket, I saw an orthopedist who handed me an Ace bandage and told me I’d “grow into my joints.” I never did, and that bandage became my companion throughout high school.
College was not an option for me–financially or physically. Crossing campus would hurt. So I began working, managing nonprofits, but the cycle repeated: work, get sick, lose my job, start over. It curtailed my career, and my dreams of travel became early flights home and canceled plans. My body revolted.
By my thirties, my symptoms included electric nerve shocks, severe neuropathy, tremors, and agonizing spasms. Sitting made my legs painfully numb. I was desperate, until a relative suggested I try the Mayo Clinic, which is local to me in Arizona. The doctors there were shocked at my thin frame and gaunt gaze. I saw over fifteen specialists there, because every system in my body was involved.
The doctors suspected I had an autoimmune disease, but my case was so complex they couldn’t pinpoint a cause.
At thirty-two, I started experiencing intense stomach cramps, vomiting, and joint pain. Since I had no official diagnosis, there was no recommended treatment, and no one would prescribe pain medicine without a diagnosis.
Turning a corner
My mom moved in to care for me, and with her gentle presence, she gave me a renewed sense of hope. I had the courage to keep going. Her unconditional love and unwavering support propped me up.
Another helpful moment was when my doctors suggested I try medical cannabis. Within a week, the stomach pain eased, but I still experienced joint and nerve pain. At that point, a doctor finally prescribed pain medication, which brought some relief. I also returned to childhood coping tools. Growing up in a New Age household, I used meditation and biofeedback (visualization of the pain leaving). They don’t erase the pain, but they do allow me to take a mental step back from it.
Then, things changed when, after all those years, I finally had a name for my condition: The doctors at Mayo discovered I had mast cell activation syndrome (MCAS), and afterward, they diagnosed me with multiple chronic conditions, including chronic inflammatory demyelinating polyneuropathy (CIDP), small fiber neuropathy (SFN), piriformis syndrome, and hypermobility Ehlers-Danlos syndrome (hEDS)
MCAS explained so much. It’s a condition in which mast cells—the body’s first responders—go haywire and release floods of inflammatory chemicals. It worsens everything else, including my nerve and joint pain. Finally getting diagnosed and knowing what was happening in my body was life changing. It wasn’t just a diagnosis, it was validation. I had been treated like a mystery to solve or problem to dismiss. Now doctors came to me with solutions and a treatment plan. Most importantly, it renewed my sense of hope. I could begin to heal.
Moving forward with hope
In 2022, after losing my mom and close family members, I needed connection. I wanted to help people who are suffering silently. I co-founded The Chronic Haven, a nonprofit peer support group for people living with chronic illness and pain. We offer online support meetings, game nights, creative classes, and more. This is where I found my tribe, and it brings me so much joy.
Finally, at 45, I was approved for intravenous immunoglobulin immunotherapy (IVIG) for CIDP/SFN. Every two weeks, I receive donor antibodies that help rebuild the myelin sheaths around my nerves. It’s helping immensely.
I have much to live for today. I have a better quality of life. I look forward to IVIG days, because that means I am one step close to being better. I am happy today, with supportive friends and a good team of doctors in place. I have found my smile again.
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