The onslaught of my chronic pain was sudden & unrelenting. Many develop mental anguish after years of managing crippling chronic pain, but I went reverse course, per the usual.
The onset of my second bout of fairly intense pain in my lower back occurred at the start of 2020. I knew then I needed medical attention to understand this new, reoccurring pain. Due to the pandemic, I was unable to first get care until the summer.
I began my healing journey with a highly recommended chiropractor. For two months, we tried everything in her wheelhouse | regular adjustments, acupuncture, massage. My main pain point was beyond her ability to heal.
She referred me to her mentor who practiced at a renown orthopedic hospital in Chicago. After a month of physical therapy with him & worsening symptoms; he scheduled my first MRI for the day after my 35th birthday.
Moments after the results were sent to my doctor, he brought me into his office and told me I needed surgery. The more conservative treatments that he was a strong proponent of would not help me. The MRI revealed I had a herniated L4-L5 S1 disc. This is a very common herniation, but my disc is unbalanced & bulging off center. This appeared to be cause for concern.
On my brother and sisters-in-law’s birthday, I was back at the hospital waiting for my first appointment with a highly recognized, compassionate award receiving orthopedic surgeon. A young surgeon who developed the minimally invasive procedure that was recommended by my doctor.
Prior to meeting me, he had me undergo my first set of X-rays. After the X-rays were completed, I was brought to a room to wait to meet my potential surgeon.
Once he came in to the room to introduce himself and meet me, he uttered his first words | “you are a medical quandary”.
He never tested or touched my muscles or nerve responses, did not watch my gait, did nothing to confirm my physical capacities or deficiencies. Instead, he asked if I was a tomboy as a child, which I was, and he shared that I had a stress fracture directly below my herniated disc.
My first surgeon sent me home with a decade long treatment plan | daily anti-inflammatories, loose weight + start physical therapy. He told me if I developed nerve damage to return.
Two months later, I developed nerve damage. It started in my right quad and slowly spread down my leg over the front of my thigh, down the outside of my right knee, straight down my calf, settling into the top of my right foot and first three toes. The progression of these symptoms was steadfast. There have been so many physical changes as a result of the pressure of my herniated disc on my nerve cavity. The symptoms all compound on top of one another.
I went back to him mid-December due to my nerve damage. He turned me away again. He was dressed in an unbuttoned shirt and sports blazer. After jumping through another two months of hoops with my quickly declining physical capacities; I realized what I learned during my mental health efforts in seeking medical care | time to pivot.
I left one hospital network for another. I returned to my primary hospital network for care.
Two days later, my new medical team had me come in for my first appointment. My new potential surgeon was concerned with how quickly I was physically deteriorating. The following week I had my first epidural in my lower lumbar. You lay on a table with a needle hitting all of your pain points & are required to remain completely still & relaxed. The injection does not work if you tense any muscles that the needle is penetrating.
I have learned how to sit through all of the pain.
The first epidural was thought to be a great success. As a result, we decided to delay the second epidural. We waited too long.
The second injection did not provide relief despite the happy dances happening by the three medical personnel in the room while I was still laying on the table. They said this was the anesthesiologists most perfect injection. The dye was flowing, completely unobstructed, down my spine before I even had the chance to climb off the table & steady my feet on the ground.
A month later I was told I needed a discectomy.
My trust in my medical care was on the fringe by this point in my care.
As a patient, I poured myself into understanding my symptoms and diagnosis. I was no stranger to learning how to be your own best advocate. You have to educate yourself. Do the research. Understand what the underlying pain points & triggers are.
The more attune you are, the better the prospects of healing are.
The more you advocate for your care, the better care you get.
The more relentless you are, the further you go.
I wanted a more comprehensive opinion.
I wanted a team that would take a more holistic, comprehensive approach to medical care.
I wanted patient-centered care instead of profit focused.
I wanted the best opinion.
It took months of endless, bureaucratic hurdles, as is life in the medical world in the midst of a pandemic, but I did not relent. I was making medical and administrative calls like it was a full-time job. It was my full-time job at this point.
I signed off on 5 years of medical records and got the call that Mayo Clinic would take me on as a patient twenty minutes after I got the call that my offer on my new log cabin home in MI was moving to contract.
Those 45 minutes were magical. Back-to-back phone calls of good news while I was off the grid glamping with my pup. It finally felt like things were moving in the right direction.
Mayo Clinic | August 2021 | Chronic Pain Journey
I arrived in Rochester, MN one month later, immediately after closing on my new Lincoln Log Cabin.
The first appointment I had at Mayo Clinic was with a doctor who told me that the strength of my mind was in overdrive healing my body. In the 11 months between my first set of X-Rays in Chicago & my 3-night stay in Minnesota for more comprehensive, patient focused care at Mayo Clinic; I had healed a decades old stress fracture & another embarrassing symptom that was said to be lifelong and likely to multiply.
After days of additional testing and procedures, one of which is the most excruciating procedure I have endured and provided abnormal results that led to a week of waiting to learn if I had a more advanced medical condition, I met my potential future surgeon. We had a very insightful and honest conversation about how much my life had changed as a result of my chronic pain.
After analyzing & discussing my MRIs, X-Rays, Cat Scan, EMG | he recommended a fusion surgery. He told me the discectomy would have me back under the knife within 4 years. The “loosey-goosey” structure of my back would not support a discectomy. I would ultimately need additional superficial, structural supports, titanium plates, added to my right lower lumbar.
The fusion would require a week in the hospital at Mayo Clinic for surgery. Once I returned from MN, I would need three months of live-in, around the clock care. There is nobody I could envision living in my oasis with me for three months. At 6 months, I would have some more normal mobility return and it would likely be a full year of recovery.
When I moved to Michigan the week after my return from Mayo Clinic, my plan had been to settle in and return to MN in October for the fusion surgery.
Once I moved to Michigan; I started healing.
I found solace in nature. I learned to slow down and embrace a more intentional lifestyle. I started physical therapy.
I leaned into the idea that the sheer determination of my mind is actively healing my breaking body.
I have spent nearly every single moment of the last two years in varying degrees of physical purgatory.
I do not know when, or if, I will regain the luxuries I once had as an able-bodied person.
I know that the more you have stripped from you, the more resilient you can become.
After navigating some of the most renowned hospital systems to help understand and treat my chronic pain | constantly shifting, pivoting and advocating for my care | I see how much those of us with invisible illnesses have to be our own strongest advocate to get the care that we are entitled to in a country that prides itself, among other things, on having one of the strongest healthcare systems in the world.
Healthcare should not be subjective. Healthcare should not discriminate.
