Voices Across America

My Patient Story

Katie Clark

State: Michigan
Congressional District: MI02

Diseases

Chronic Pain, Genetic Disease, Mental Health, Rare Disease, Urological Disease

Issues and Challenges

Katie Clark has encountered: Access to Medicine, Copay Issues, Insurance Issues, Mental Health Access, Surprise Billing, Invisible Illness, Job Insecurity / Loss, Social Security Disability

My Story

I was a 6th-grade teacher for 32-years. I had planned to teach for many years to come. I had a laminated news article of an 80-year-old English teacher hanging behind my desk; that was the vision I had for myself. My husband had recently retired from the FDA, and I imagined coming home to dinner made, laundry done, etc. But, Fibromyalgia began to take over my life.

There are three main issues that I deal with: Fibro fog (which sounds way cuter than it is), extreme fatigue, and a roving, all-over, deep, toothache-like pain in my muscles.

Losing Myself

I couldn’t function in the classroom, a place that was my second home and a way of being that was my second nature. I could no longer teach fluently; I constantly lost my thoughts and words. I lost my sense of humor and ease of dealing with the numerous situations that came up with 6th-grade students which I had been known for prior to my last couple of years of teaching.

Coming home at night, I was too exhausted to do more than lay down. Prior to developing Fibromyalgia, I lived a very active life. After a full day of teaching, I’d come home to a full night of family life. On the weekends, my husband and I often do all our house chores of yard work, laundry, and the like, as a family. Then, we’d fit in a hike, family gathering, or attend our kid’s soccer games. Now, I was struggling to even drive home from work.

As a mentor-teacher, known for leading in-service sessions and classroom visits where I modeled reading and writing workshop to my peers, I became panicked about my own evaluation. I couldn’t fill out the pre-eval form and ended up calling my kind, understanding principal who had known me for years the night before to cancel the next day’s observation. This was when I really understood something was seriously wrong.

What is Fibromyalgia?

So, in desperation, I went to see my GP in the fall of 2018. I described to him the pain I had nearly everywhere in my body, the wet sand I felt that filled my body and made every step a struggle, and the inability to speak or think coherently. When my GP mentioned Fibromyalgia, I didn’t know what it was. I had never even heard the word before. The teacher/learner in me began to research Fibromyalgia because he admitted that he didn’t know much about it.

I truly thought I’d have a month, maybe two, of rest and self-care, and I’d be back to teaching. That didn’t happen. On December 7th, I called in sick. After a weekend in bed, I couldn’t go in on Monday, then Tuesday, then Wednesday… I contacted my personnel director who let me know that I could go on long-term leave. “You have enough days saved up to cover the rest of the year and then some.”

As weeks, turned into months, I realized that I couldn’t go back to the classroom. That May, I retired as I had just turned 55 and had 32-years of teaching. In doing this, I left a huge part of me. My classroom was my second home; my fellow teachers and students-my second family. I still deeply mourn the loss.

As Mimi to my 6-year old granddaughter, Copeland, whose family lived with us until she was 4-years old, she has learned that I have to rest, meditate, and take care of my painful body. There would be many times when the family was out in the living room, and I was in bed. I’d so desperately want to be out with them, so I’d get up and move to the couch, but I wasn’t even well enough to sit there and had to go back into the dark comfort of my bedroom. All of this led me into a deep depression. But my little Copeland is my light and motivates me to keep trying and not give up.

A FULL-TIME JOB

And so for the past 4 years, I’ve had to find my own way to manage my Fibro symptoms. I’ve searched out specialists, only to be told, “Good job with what you’re doing, keep it up”, or “I have no better advice to give you”. I even wrote to Dr. Daniel Clauw of the University of Michigan, one of the world’s leading researchers of Fibromyalgia.

U of M hospital no longer has a program that takes Fibromyalgia patients, so I asked Dr. Clauw for a recommendation of a doctor in MI; in his email response, he stated, “Dr. Andrea Chadwick at University of Kansas Medical Center was an option.” I contacted her; she’s a 10-hour drive from my house! She couldn’t consult me over ZOOM because of her medical license.

Luckily, I got into a multidisciplinary pain management program at Mary Free Bed in Grand Rapids in June of 2019, just after I retired. I went through the 10-weeks with a team consisting of a pain specialist (Dr. James Hudson-just retired), a pain psychologist, a physical therapist, and an occupational therapist. 2-3 visits of 3-4 hours each visit. Through them, I learned about brain plasticity and rewiring the brain. That has been my focus ever since. My research, sharing my learning, and practicing ways to calm my nervous system has been my full-time “job”.

Here are just some of what I use:
Researched a lot about the brain: Dr. Andrew D Huberman on YouTube & Dr. Norman Doidge The Brain’s Way of Healing
MBSR Meditation training (8-week course) & now Insight Timer
Breath Work/Yoga
Myofascial release PT & self-practice
ACT/CBT/DBT/EMDR Therapies
Dr. Howard Schubiner- Mind Body Syndrome Therapy
Low Dose Naltrexone (ldnresearchtrust.org)
Getting out in nature-mindfulness
Gratitude/Journaling

Mother’s Day Weekend

I had been in more pain leading up to our family weekend after I had hiked 8.5 miles on the North Country Trail that past Thursday. Now that both of our adult children live out of town, getting us all together is very special. On Saturday, we had Copeland stay the night. She and I made slime, played make-believe, did a craft, played outside, but when I start getting the foggy brain and more intense deep muscle pain in my arms, ribs, hips, thighs, and calves, my husband tagged in, and they went to the park to play. I’ve learned to be honest with Copeland, and through this, she’s learned empathy and patience.

On Sunday, about 2 pm, I wasn’t sure if I could be present for our family dinner. So, I did a long, guided meditation, lying on a heating pad, and then, massage with my Thera Gun. Afterward, I felt well enough to hang out. We had a good time: dinner and a game of Pictionary with the whole family. But, I went to bed soon after they left at 6 pm because I had given all I had.

Coming through that time shook my core and upended my life. Fibromyalgia side-lined me, leaving me in bed, whimpering most days. However, with some wonderful guidance from that initial 10-week chronic pain program, luck, family and friend support, and continuous work learning how to best take care of myself, I have begun to rise out of that painful mire. I realized that I can recreate myself and live a FULL life of passion, love, and hope. Part of that FULL life is advocating for other patients to give them the same or BETTER support than I have had.

My Motivation and Inspiration

I did not know what FIBROMYALGIA was until I was diagnosed in November 2018. Being the teacher/learner I am, I began to research and found great resources (some really bad). I have become pretty educated about what it is, how it affects me, the whys (as much as there can be), and how to manage it so that I can live my life FULLY, on my terms, even while having pain. I feel that sharing my journey can give insight to others on their own, much like others have helped me.
I have also come to understand over the last 4 years, that I can help bring changes that can better the loves of those living with Fibromyalgia and other invisible illnesses. I want to help bring about policy changes, insurance support, SSDI process changes, more/better research, and understanding.

Share This Story

Share on facebook
Share on twitter

Find More Stories

Browse the map or filter by:

Click on pins to view stories.

ZOOM IN OR OUT TO CHANGE THE VIEW.

Get the most from every Story

Find A Compelling Patient Story

Share it on social media.

Share Your Story On Our Network

Share your insights, challenges and what keeps you going.