SUMMARY

It seems my 4-year medical mystery is largely resolved! Hooray!

LONGER SUMMARY

4 years ago on November 1, 2017, I caught the family’s stomach flu and threw up. (Pretty exciting, right? EVERYONE knows that ALL good stories include vomit!)

In the act of emptying my stomach, I felt an excruciating tearing/pulling sensation in my upper abdomen—just left of center, beneath my 9th rib.

The pain was searing and debilitating and didn’t respond to over-the-counter meds, ice, heat, movement, or rest, so I made an appointment with my family doctor.

An initial diagnosis of an “abdominal strain or tear” was made after I was asked to perform a series of movements, including raising my leg off the exam table (which I couldn’t do), perform a crunch (also couldn’t do), and after my doctor felt along my abdomen, asking me to contract or turn my torso at different points.

I faithfully took the prescribed meds (Robaxin as a muscle relaxant and Oxycodone to relieve the pain) and I alternated ice and heat, but nothing seemed to help. The meds made me nauseated and drowsy, but did nothing to touch the pain.

How could I possibly have known that this was only the beginning of a crippling medical mystery that would take 65 doctors and more than $150,000 over a period of 4 years to (largely) resolve?

THE END? (SPOILER WARNING)

To jump ahead in time, I ultimately received a diagnosis of ACNES (Abdominal Cutaneous Nerve Entrapment Syndrome) and underwent a surgical neurectomy to remove 6 nerves entrapped in my soft tissue. 

I’m currently working hard at rehabilitating my back, abdomen, and legs; working full-time, and enjoying time with my family.

What follows is a broad summary of my journey toward a diagnosis, as well as my treatment and current rehabilitation.

I genuinely don’t know if anyone will ever read through any of this, but my goal is to share things I think might be helpful to others who are struggling with chronic and/or diagnosed pain.

Thinking back on any specific period of time within my experience (let alone all 4 years of it) is more than a little overwhelming, so please bear with me as I attempt to summarize, while still hitting on what I hope are helpful aspects of my experience with chronic, undiagnosed pain.

Overlapping with my mysterious chronic pain were several other deeply-affecting events, including: the birth of my youngest child, the baptism of my oldest daughter, the passing of my father, and the onset of the COVID-19 pandemic.

2017-2018: THE HUNT BEGINS

So: I threw up and was treated for an abdominal strain/tear. 

2 months into this excruciating pain, I was hired as Creative Director for a company that claimed to be a video game startup of sorts (a story for another time), after having previously worked as Creative Director for an education company and working full-time as a self-employed freelance illustrator and graphic designer (for a good time, check out some of my books for children and young readers).

This was a major shift in my family’s life, my personal life, and my work life, and I did my best not to complain about my pain or to let it disrupt or affect my work. For months, I prayed constantly for strength and endurance as I struggled to drive to and from work, and sit and stand at work, searching for relief of any kind.

I continued seeing my family doctor, who adjusted the dosages of my medications and prescribed some movements for me to experiment with, though they only seemed to increase my pain.

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BETTER, THEN WORSE

In March 2018, I had a week of surprisingly decreased pain (no idea what precipitated the change), but I found myself home alone and having to reach for my outdoor sump pump cable, as my basement was on the verge of flooding for the 4th (5th?) time.

Immediately, the same pain I felt when I had thrown up 4 months earlier struck me—almost like a shock or like someone strumming my insides—in the exact same place.

While I managed to stop my basement from flooding (at least that time), the pain was worse than it had been to begin with and every aspect of my life was affected.

• I needed help showering, lifting my legs, getting dressed, and tying my shoes
• I could only walk short distances
• I drove with my car seat leaned waaay back and did my best to lean in chairs or resort to standing
• Sleep was difficult and would wake often with muscle spasms in my abdomen

It was awful. I would come home from work in terrible pain and surprisingly exhausted, wondering how I could possibly do it all again the next day. (Those of you with acute and chronic pain know the singular exhaustion that attends such a condition.)

I continued meeting with my family doctor but the adjustments to my medication didn’t seem to help. In fact, the meds made me constipated, drowsy, nauseated, and ill. 

9 months into my chronic, worsening pain, I was let go from my position as Creative Director and left to seek both full-time work as well as an answer to my pain. I drove up to an hour to interviews with potential employers, leaning my car seat back as far as I could, while also fielding freelance illustration and graphic design jobs. My wife was working full-time and doing the lion’s share of house and yard work, while we helped our kids with getting to school and completing homework. We felt blessed and looked after, but we also felt the day-to-day stresses and pains as we struggled to address the major needs in our lives.

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LOOKING INSIDE

In August 2018 (10 months in), I had a CT scan that came back “unremarkable”, other than a “slightly enlarged spleen.”

A slightly-enlarged spleen! I thought. Finally, someone has identified something wrong and now we can fix it and move on. 

I was referred to a gastroenterologist, who reviewed my symptoms and CT, and determined I would need an upper endoscopy to look at my digestive tract. The endoscopy revealed only mild acid reflux, of which I was unaware and for which I was given a prescription, which made me feel sick and achy overall and sharpened my rapidly increasing back pain.

The gastro ordered an MRI because he could only see so much with the endoscopy, but I was unable to secure an official order for an MRI from my gastro and family doctor.

I had been using every handrail and wall to help me walk for at least a month, but the chronic pain was closing in so powerfully, slowing my steps and stiffening my back and abdomen—I knew I had to look for a better and more dependable means of walking assistance. I used every spare minute between working and helping out at home to lay down flat on my back to rest my increasing back, abdominal, and leg pain. 

From my journal: “I know I didn’t do anything wrong to bring on this injury and I know I didn’t do anything wrong at work to lose my job, but it’s hard not to feel guilty about laying down all day and being of little help to my wife and family.”

CANE

On Saturday, August 11, 2018, I bought a cane.

It was a genuinely discouraging and disheartening purchase, but I didn’t know how else I could keep walking unassisted. I had spent weeks secretly researching options for walking assistance devices without telling my wife, and I felt something like shame when I reluctantly divulged the cane.

I continued fielding illustration and graphic design work as I was able and participated as a speaker in as many book-related events as I could. I visited with elementary, middle school, junior high, and college students, hosted comics workshops at schools, libraries, and bookstores, and showed illustration and sketchbook work at galleries.

In September 2018, I participated in more than a dozen events, including the 3-day FanX comic convention in Salt Lake City, several writing symposiums, and a multi-author book signing at my local Barnes & Noble. 

It was at the book signing that I realized I couldn’t bear to sit, stand, or walk any longer. 

The pain was excruciating! It took all my strength and focus to drive home with the seat laid back, trying not to engage my panged abdominal muscles or strain my back. My teeth were clenched and I couldn’t help but cry through the pain. 

Why was I in so much pain? Why hadn’t doctors found anything to answer for it? What was I supposed to do for work, if I could no longer drive, walk, stand, or sit up for any length of time? What kind of a husband and father was I, if I did nothing to contribute to my family?

The weight of the pain and other life circumstances were too much. Something had to give. But what?

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PUSHING

Thinking I could metally and/or physically muscle through the pain, I pushed through my daily activities for as long as I could. 

I stood for 12 hours at a time at events, drove up to 3 hrs round-trip for work opportunities, pulled all-nighters to make ends meet, changed my diet (more on that later), and I hiked with my family to Timpanogos Cave with my daughter on my back—a strenuous mile-and-a-half trail up 1,092 feet that takes roughly 3 hours to complete round-trip.

This was a situation where simply “pushing through” was not enough—most importantly, it wasn’t healthy.

Pushing through yielded no improvements and I found myself in more pain and with less mobility.

But what else was I supposed to do?

Looking back, I honestly have no idea how I managed to work through that period of my life, participate in so many events, attend church and family gatherings, drive, swim, walk, stand, sit up, and hike to Timpanogos Cave through the severe pain. I still push through every single day (just like most people), but in different ways.

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WHAT’S NEXT?

Nearly a year into my undiagnosed pain and spending most of my time laying flat on my back in bed (the least painful position I could tolerate), I wondered what to do next.

I fasted and prayed for help.

I researched my symptoms more in-depth and ate as healthy as I could, in the hopes it might help.

I received powerful Priesthood blessings.

My family and I received an outpouring of love from family, friends, neighbors, and church members.

We felt encouraged, supported, comforted, and loved in ways and to depths we’d never imagined.

Still, I hoped and prayed for relief from my pain.

PUT YOUR BACK INTO IT

In November 2018 (1 yr in), my abdominal, side, and back pain had built to such a high degree that my wife and I called to see my family doctor immediately. (I had started using a walker gifted to me by my friend and neighbor, who had experienced more than his share of serious health problems.)

The nurse instructed that I be taken to the E.R. at once and we both couldn’t help but cry and pray after hanging up. We didn’t have much money and we’d heard so many horror stories about the E.R, and accompanying costs.

We called our insurance provider to see how they’d handle an E.R. visit and that’s when my wife and I learned too late that our insurance had changed because of a shift in my wife’s employment. 

Not only did this mean we didn’t have insurance to cover a visit to the ER—it also meant that I had 4 months of doctor bills that hadn’t been covered by insurance. 

We had even less money than we’d thought!

When the pain only worsened over the next few hours (despite taking my meds, applying heat, and receiving massages from my wife), we looked into options on how to pay for a last-minute, uninsured visit to the ER.

The best we could find was something called a “Medicaid Spenddown”, which would effectively allow us to pay a fee for a given service and let us finance a medical visit over time. 

11/12/18: It’s now been over a year since my initial injury (the beginning of last November) and I’m still in constant pain. While some days have been less painful than others, there is a constant pain just below my ribs. Sometimes it is a deep soreness, as though I had the wind knocked out of me. Sometimes it is a burning sensation. Sometimes I’ll get intense cramping on my right side, below the ribs. It will be a strange bubbling sensation with tight, pulsing contractions. Often there will be a painful tugging deep in my left side, near my hip. 

For treatment, I spend the majority of the day laying down flat in my bed, or with my head and chest slightly elevated with some pillows. It hurts my stomach when I bend my knees at all, and the pain is instantly made worse by turning on my side. I take 800mg of Ibuprofen every 6 hours, and something for heartburn in the mornings. Every now and then I try the TENS unit, but I’m not sure if it’s helping, making things worse, or having no effect. I can read for a time, but the pain is so intense that I quickly lose the thread of any narrative and I get a headache. When I am able to take in information from reading, it makes me want to write and draw, which is painful. I draw every now and then, but in short bursts, since there isn’t a comfortable position to draw from. Same with writing. (I’ve been writing this entry as quickly as possible, here and there.)

Every day of last week was a battle with depression. It’s hard not to feel useless. It’s such a strange thing to know that we have transitioned from summer to fall, and soon to winter, but that I’m not really experiencing the change. Christmas is a month-and-a-half away, and it’s hard not to think of all the festivals and lighting ceremonies and performances I’ll miss. 

ER: PART I

I was seen by a dr in the ER, who determined I needed a new CT (even though I had one just a few months prior).

Aside from my “slightly enlarged spleen”, my results came back “unremarkable” and I was referred to a second gastroenterologist for a second endoscopy. While the ER dr said they were unable to refer me to any other specialists, they suggested I ask my family doctor and gastroenterologists for outside referrals. 

My wife and I were absolutely crestfallen, feeling like we had been set back 3 months in time and thousands of dollars, with still no answers, but with much more pain.

After I was given my discharge papers, a second dr stepped into the room and said he’d heard about my “mysterious pains”. He wanted to do a few tests.

I was laid on my back, asked to describe my symptoms and point to their locations. He pressed into my abdomen and sides and had me perform a few simple movements with my legs, torso, and abdomen. 

I was then helped to a standing position and the dr hit my back in various spots, while asking more about my experience over the last year. 

He said that the pain couldn’t be muscular, because he pressed on the attachment points, as well as the muscles themselves, and there was no pain. He thought out loud, saying something to the effect of so why would your stomach be in so much pain, if there doesn’t seem to be any problem with the muscles and we’ve scoped your GI tract and found nothing? Where is this pain coming from? After thinking a moment, he proposed I wonder if it could be your back? I looked back at my wife, who started crying, because we could both feel that this was a doctor who truly seemed to be looking for the source of the problem. After feeling so helpless, we suddenly felt hopeful again. It’s possible that you could have a disc out of alignment that’s pinching a nerve and you’re feeling it in your abdominal area. 

An MRI of my lower back was ordered to visualize the bones and nervous system, and hopefully get to the root of the situation.

11/19/18: I’ve been bedridden for such a long time, and I’m not able to draw or write even a quarter as much as I could before the pain. I’m not making any money whatsoever, and Mikelle’s [my wife’s] hours have been dropped to part-time. I don’t want to be holed up in the house while Mikelle works and takes care of our family, with both of us worrying about money. I feel like I can’t be the husband and father I want to be. I feel like I can’t be the person that I want to be because I can’t sit up, take care of the house, play with my kids, tell the stories I started.

MRI: THORACIC & LUMBAR SPINE

I called my MRI provider and asked to be put on their “Cancelation List”, in case another patient canceled and I could take their spot—a spot opened up and I got in 8 days early!

Noted in the report were several instances of “disc desiccations”, “Schmorl’s Nodes” and “broad-base disc bulges”, as well as notes for “anterolisthesis”, “herniations”, “narrowing”, “endplate hypertrophic change”, multiple “disc protrusions”, and an overall impression of “degenerative arthritis”.

After consulting with several physicians and even qualified family friends, it was determined that—despite the more than 20 issues noted with my spine—my spinal problems were minimal and offered no answer or insight into the pain I was experiencing.

What do you do when you’re trying everything you can think of and it isn’t helping?

11/21/18: Last night Mikelle told me “I know I was supposed to marry you so that I could take care of you.”

PAIN MANAGEMENT, MEDICAL ASSISTANCE (13 MONTHS IN)

My family doctor referred me to a pain management clinic and I asked for an additional referral to a different pain management clinic, where several family members, friends, and church members had good experiences. 

I was learning more about what kinds of things I could ask from medical professionals (among other things: referrals to specific specialists and facilities, looking into specific conditions, and getting on a clinic’s “Cancelation List”).

I also requested a referral to a back specialist, who came highly recommended to me by 5 of my close friends and family members, though it would cost up to $400. 

After learning that my ER visit was $3k and that my MRI was close to $7k (knowing we had no sustainable way of paying for these and future visits while also supporting our family), I applied for Disability and medical assistance—an incredibly tedious and time-consuming, frustrating, and heavily papered, multi-step process.

Though it would take 6 months of additional paperwork and long phone calls after waiting on hold for literal hours at a time, we finally received a decision for Disability: DENIED.

ER: PART II

We were also denied Medicaid due to the situation with my previous employment earlier in the year. 

My wife and I spent literal days on the phone and digging for info online, trying to find a doctor that would see us without insurance, looking for an affordable insurance company, exploring financial assistance options, and reapplying for Medicaid with a different approach, seeking out community help, etc. (We eventually found affordable insurance through a private provider, which helped tremendously until my wife’s employment changed.) 

Additionally, my referral to the highly-recommended back specialist was denied.

After making several calls and pleas to the doctor’s office, we were directed to go to the ER and request to see a neurosurgeon, which we did. (We also applied for financial assistance through the hospital in the hopes of covering at least some of what was sure to be another expensive visit.)

In the ER, I was seen by a doctor who reviewed my MRI results, administered intravenous painkillers and a steroid to help me better tolerate the pain for a few hours, and called a back specialist, who ordered an epidural (x-ray-guided steroid injection) and an appointment with the specialist for the next morning. 

EPIDURAL #1: SUCCESS!

I learned the next morning that my back specialist canceled my appointment without telling me and that he refused to see me because my MRI displayed nothing significant enough for him to examine. 

It was my friend (and then Home Teacher) who drove me to my epidural, which took only 5 minutes and wasn’t too painful. I was required to lay down under the watch of medical professionals for a period of time to make sure I was coherent and in control of my faculties before leaving.

Surprisingly, the local anesthetic (Lidocaine) improved my pain by something like 20-30%! The relief was a noticeable difference that allowed me to sit upright during my ride home and even walk around long enough at home to record a video for myself crying with hope that I might soon be able to take a walk outside, possibly attend Saturday’s Ward Christmas Party, help out around the house, and do something with my kids.

NEW FAMILY DOCTOR

It was at this time (11/28/18) that I found and scheduled an appointment with a new family doctor, in the hopes of participating in a more proactive approach.

I found this new doctor by looking up family physicians in my area, then filtering them by quality of ratings, then by quantity of ratings. I read through every single review, paying attention to patient comments like: “the best there is-a credit to his profession! I feel genuinely cared about and trust his opinions and advice”, “very friendly and personal attention from all involved with taking care of me”, “professional, caring and thorough and is both interested and sensitive to my needs and concerns. He pays attention to detail.” (Note: these are all actual comments from this doctor’s patients.) At the time, this doctor had more than 3,500 reviews in 10 categories, with at least 4.6 stars in each category.

12/2/18: Shivering is a new kind of pain I never want to experience again. I was only outside for a minute or two, but the shivering that followed felt like my spine and tailbone were pinched in a vice and shaken violently.

My new family dr was a breath of fresh air. He quickly came up with a handful of options for identifying and treating my pain.

I had blood drawn and sent to a lab to test for several conditions. I was instructed to take a lap around the kitchen once a day, which I did. I also started a trial of Lyrica—a seizure medication that has a positive side-effect on patients with nerve pain. 

Soon after, I started experiencing stabbing, jabbing, pulsing, cramping, shocking jolts at different points in my back, sides, abdomen, and legs. I counted an average of 20-30 painful jolts each hour for several days.

I was able to fall asleep a bit easier, but I ended up sleeping less.

TAKING NOTES / RECORD-KEEPING

Now might be a good time to mention how I tracked my health and medical experiences. (I know this is a long-winded post, but I genuinely hope the information I’ve shared will help someone.)

I journal regularly.

My dad got me a journal when I turned 8, though it took me years to write in it regularly. (Keeping personal and family records and genealogies is broadly encouraged in my faith.)

My journals eventually took on qualities of To Do lists, calendars, notebooks, sketchbooks, scrapbooks, and even working through story characters and ideas. (Read more about how I use my sketchbooks and journals here.)

All this to say that I’m accustomed to tracking my day-to-day activities, as well as my thoughts and feelings.

• I started preparing questions for my doctors before our visits (“Can we look into X condition?” “Can we test for X?” “Do you think it’s worth getting a referral to X?”, etc)
• I wrote down the doctor’s answers for each question in a dedicated Google Doc 
• I created a cloud folder for all my imaging, reports, and results
• I created a dedicated GoogleDoc for medications, treatments, conditions, specialists, and other things to look into
• I created a dedicated GoogleDoc to track which specialists I saw and when I saw them, as well as which medications they prescribed (including dosage, frequency, and dates used), imaging areas, dates, and results, and my symptoms (which varied quite a bit, depending on which medications I took)

I also started down a path of fairly involved research, seeking out bloggers, YouTubers, and online groups related to my symptoms and different meds/treatments I was involved in. Learning from others might save me from costly experimenting of my own.

Additionally, I slowly started introducing my health concerns, struggles, and activities into my social media accounts. I figured that it was worth letting my friends, family, and acquaintances know about such an important aspect of my life.

2019: DOCTORS AND LUNCHES

2019 was, among other things, the year for seeing new specialists and trying various pain medications and treatments. It was also a year for lunches and making friends.

SPECIALISTS

I met with gastroenterologists, rheumatologists, spine specialists, pain management specialists, rehabilitation specialists, physical therapists, orthopedists, chiropractors, allergists, and immunologists.

IMAGING

I received imaging in the form of upper endoscopies, colonoscopies, ultrasounds, head MRIs, abdominal x-rays, CT of abdomen and pelvis (with and without contrast), and MRIs of my thoracic and lumbar spine.

PRESCRIPTIONS

I was prescribed varying dosages of hydrocodone, robaxin, oxycodone, omeprazole, mirapex, predniSONE, tramadol, cymbalta, promethazine, SUMAtriptan, ibuprofen, medrol, percocet, dilaudid, zofran, decadron, lyrica, elavil, duloxetine, bactrim, diclofenac sodium, tonic water with quinine, lisinopril, ketorolac, gabapentin, methotrexate, cymbalta, indocin, low dose naltrexone, and seroquel. (Most medications were prescribed to address pain, potential nerve pain, sleeping problems, as well as to treat side effects from other medications.)

At one point, I was prescribed a low dose of chemo medication (methotrexate), which made me feel absolutely awful and didn’t seem to improve my symptoms at all.

HALLUCINATIONS

I’m not sure, but I think it was the cymbalta that caused my bout with visual and auditory hallucinations and one of the most horrific periods of my life.

I would sleep for roughly 2 hours for a few nights in a row, then get something like 4 hours of sleep and a 1 hr nap, then the cycle would repeat. It was terrible.

4/19/19: I got 2 hours of sleep again last night (does this make 3 or 4 nights in a row?), and the last few nights I was hallucinating. All through last night, I saw people walking through the bedroom, faces hovering toward and away from me, shadows, voices, many voices. I showered this morning and saw an alligator by my feet. I naturally jerked away, even though I knew it wasn’t real, and my pinched nerve painfully shot through my arms, jaw, head, and back. It took me a couple of hours to stop shaking, but even now my hands are quivering and my back is spasming. I’ve never hallucinated before in my life and I need to find a way to get more sleep.

The worst my hallucinations ever got was when I would consistently see a crowd of men and women dressed in clothing styled from the American 1930s, traveling through my bedroom in front of me in rapid succession, as if to catch a train. 

One night, I woke my poor wife to tell her there was a man beside me pouring water from a pitcher into a glass. I knew no one was in my room, but it was terrifying to see and hear something so clearly that wasn’t there at all.

(These experiences stopped with the cessation of cymbalta, but caused me a lot of trouble later in the year when a doctor questioned my sanity and had me stand for a prolonged period of time, causing incredible pain.)

PROCEDURES

I received multiple epidurals, multiple radio frequency nerve ablations, multiple interlaminar Lmbr/Sac NJX, multiple triamcinolone acet injections NOS, multiple sacroiliac joint injections, paravert F Jnt L/S 3, 2, 1, fentanyl citrate injections, destroy L/S facet joint, and multiple midazolam hydrochloride injections.

SYMPTOMS

My symptoms started with the severe tearing/pulling pain in upper left quadrant of my abdomen, incited during vomiting with symptoms of the flu, then grew to include:

• Pain spread across upper abdomen beneath rib cage
• Continued pain in upper left quadrant of abdomen
• Chronic nausea, dizziness, difficulty concentrating, sensitivity to light and sound
• Increased widespread pain across abdomen, sides, and back (mid and low)
• Decreased mobility
• Constant pain beneath 9th ribs, strongest on left side
• Sores on crown of head, eyebrows, upper lip, and chin
• Intermittent rashes on elbows, hands, cheeks
• Sever mid- and low-back pain
• Prolonged stage II hypertension
• Prolonged hypertensive crisis

DIAGNOSES

Diagnoses included: abdominal pain, esophogitis, abdominal strain or tear, widespread inflammation, enlarged spleen, damaged diaphragm, damaged abdominis rectus, damaged obliques int/ext, lumbar pain, thoracic spine pain, inflammation around spine, muscle spasms in low back, sacroiliitis, transient synovitis, spondylosis without myelopathy or radiculopathy (lumbar region), radiculitis/radiculopathy, broad-based disc bulge at L2-L3 with some right paracentral disc protrusion, L4-L5 disc disease with a bulge and more focal central disc protrusion which effaces the ventral thecal sac and lateral recesses, disc material abuts traversing L5 nerve roots in lateral recesses, rheumatoid arthritis, headache/dizziness, intermittent nausea, intermittent seborrhea/rash, hypertension, generalized nerve pain, lung bases slight dependent atelectasis or scar; as well as suspected: fibromyalgia, mixed connective tissue disease, and autoimmune condition/disorder.

I was diagnosed by a rheumatologist as having rheumatoid arthritis, for which I started treatments, only to have the diagnosis redacted by the rheumatologist’s assistant months later.

HOME CARE

I was also experimenting with a variety of home care methods, including: tylenol, ibuprofen, naproxen, aspirin, aleve, IcyHot, heating pads, ice packs, lavender oil, eucalyptus oil, lavender and peppermint tea, Noni Juice and chews, CBD oil, TENS units, massage, diets and eating patterns (listed below), weight-lifting and body movements, using a body pillow, participating in Bodywork, Body Code, Plexus products, a wide variety of supplements (B complexes, curcumin, milk thistle, garlic, fish oil, cinnatrax, chelated magnesium, elderberry, calcium, etc), herbs, and tinctures, breathing exercises, a variety of meditation methods and techniques, pain relief patches, nano-tech patches, zero gravity chairs, and using a back brace.

DIETS & EATING PATTERNS

Through a combination of minimal physical activity (showering, using the bathroom, and getting to appointments) and heavy medications, I was gaining weight. I figured that if I couldn’t improve my health through any other means, I could at least control my eating. 

I focused on what I ate, how much I ate, and when I ate. 

For weeks and months at a time, I experimented with a low carb/high protein/moderate fat diet, anti-inflammatory diet, water fasting, dry fasting, extended fasts, time-restricted eating, intermittent fasting, one meal a day, among others. 

Methods I had employed in the past no longer worked, no matter how disciplined I was. It was incredibly frustrating, and again left me with the question: what do you do when you’re trying everything you can and nothing helps?

APPOINTMENTS

I often had as many as 4 or 5 medical appointments each week and was spending hours each day, researching others with my symptoms, looking into medical studies, and communicating with others suffering from chronic, undiagnosed pain. I also reapplied for Disability and was denied because I had no diagnosis.

My and my family’s life almost completely revolved around my health and care.

PHYSICAL THERAPY / CHIROPRACTIC CARE

I participated in physical therapy and chiropractic care as much as three times a week throughout the year, torturing myself with leg lifts and torso twists, table traction and low-frequency vibration.

In some ways, I was back in a “push through it” mindset, but I had enough reason to believe that a more aggressive, physically-involved approach could be helpful. I seemed to come away from most visits in more pain than when I went in and the pain never seemed to fully subside.

DRIVERS LICENSE REVOKED

While I had been issued temporary handicap permits since 2018, and had to be driven for all of 2019 (still in effect), my license was revoked when I couldn’t sit for the photo to renew my drivers license. It was an incredibly painful, discouraging, and disheartening experience. 

Here is my To Do list for the day my license was taken away:

• Requested my immunization records via the XXX
• Requested an appointment with Dr XXX
• Compiled records from XXX, XXX, XXX, XXX, XXX (still need images), brain MRIs from XXX and XXX for comparison (need images), records from XXX
• Requested all records from XXX’s office to be sent to XXX
• Requested all records from XXX to be sent to XXX
• Requested all reports from thoracic, lumbar, and brain MRI, plus brain MRI images, to be sent to XXX (XXX faxed reports and is mailing images)
• Requested all records from XXX to be sent to XXX
• Requested records from XXX to be sent to XXX
• Requested all records from XXX at XXX to be sent to XXX (left voicemail—follow-up Tuesday)
• Requested all records from XXX (gastroenterology) to be sent to XXX
• Requested all records from XXX Hospital to be sent to XXX
• Spent 1.5 hours at DMV getting photo ID (they won’t give me a copy of my license
• Urine test for Acute Hepatic Porphyria at XXX. (3 foil-wrapped light-sensitive tests: ala delta, orpha blinigin, porphyians)

DR HOUSE

2019 was also the year I learned that the tv show character House (or Gregory House M.D. played by Hugh Laurie) was based on an actual physician and medical journalist named Lisa Sanders, MD, FACP.

Dr. Sanders started a column for The New York Times in 2002, covering medical mysteries that often involved a call to the public for suggestions, opinions, and referrals. Diagnosis also became a 7-episode series on Netflix in August 2019. I watched all 7 episodes and bawled through nearly every episode, as patients with different mysterious health concerns were given answers, offered treatments, and experienced improvements (though not all experiences ended with hope).

Though neither Dr. Sanders nor her team responded to my calls or messages, I learned about her connection with UDN: the Undiagnosed Diseases Network, which is a “research study backed by the National Institutes of Health Common Fund that seeks to provide answers for patients and families affected by these mysterious conditions.” 

I had previously applied to and been denied by the Mayo Clinic, Johns Hopkins, and other prominent institutions and clinics, including programs offered through the well-respected University of Utah, just an hour north of me. Effectively, the clinics felt I had exhausted my treatment and specialist options and that they couldn’t offer me anything I hadn’t already tried. 

I spent a considerable amount of time preparing the proper documentation, letter of recommendation, and other information required to apply for the UDN study, but was also rejected.

Every endeavor exacted a heavy cost involving time, money, and physical pain.

My list of specialists, medications, and treatments was growing, but I was constantly faced with the question: in which direction do I step when each direction seems equally promising? 

Any step I take will require time, money, and/or more pain, so I have to make it count. Taking myself further in any one direction could potentially take me further away from any other, so I tried to make educated decisions and exercise faith as best I could at each step. 

I felt the worst mistake I could make would be not taking any steps at all, so I constantly prioritized my options and tried to make the most out of each visit, phone call, email communication, application for acceptance or assistance, researching opportunities, and suggestions from others.

MISSING OUT

I was genuinely, whole-heartedly trying my darndest to be my best self, but I missed my family, I missed my ability to work, I missed visiting with others learning to communicate with words and pictures, and I missed walking, riding my bike, hiking, attending concerts, and meeting up with friends.

My lifestyle was changing and I struggled to know how to live with such a condition, not knowing what it was exactly, or how long I might have it. Is it better to know you’ll be stuck with a limitation for the remainder of your life, or to live for an indeterminate amount of time with trying to find out what’s wrong with you? Or do you simply adjust as you go?

My brother and friend helped me purchase and install a wall-mounted computer arm, so that I could more easily access my computer for researching and communication.

My friend Jason decided I needed a better cane than my $30 generic purchase from Walgreens and pooled together money from friends to get me a rad, hand-carved wooden fox cane—something for which I’m deeply grateful and complimented on a weekly and often daily basis.

My wife bought a hospital-style wheeling table that I could pull over me to use as a desk.

As much as these accessibility devices afforded me, I struggled, knowing that these also made it easier for me to stay in my condition when all I wanted to do was escape it.

I felt claustrophobic in my room–as if the room and walls were closing in on me. It was an awful feeling.

I had an incredibly difficult time concentrating when reading, watching, and listening, and I genuinely had no outlet—other than prayer and writing, which both had their limits—with which to relax or express my thoughts or emotions. I couldn’t watch more than a few minutes of a movie or tv show without losing the narrative threads and I read and reread and reread the same paragraphs of books over and over again, struggling to hold onto any meaning from them. 

Even the activities I had always relied on had lost their effects on me.

It was my Elders Quorum Presidency (in my faith, men over the age of 18 who hold the Melchizedek Priesthood are ordained as Elders, and are led by a Presidency made up of Elders), who came up with an inspired idea that would change my life in so many ways for the better.

LUNCH

The idea was simple: on certain days of the week, a different Elder from my ward would volunteer to bring me lunch and visit with me during their lunch break. 

I feel bad about it now, but at the time I laughed and said I didn’t want to weird anyone out by inviting them to my bedroom to eat with my picky eating habits (I was still experimenting with different diets and eating habits).

I’m glad my Elders Quorum Presidency asked again and I’m glad I agreed. 

While I kept a record of most of these lunch visits, there were some that I missed. That being said, I enjoyed something like 40 lunch visits between August 2019 and February 2020 (when the worldwide COVID-19 pandemic set in). Some Elders (and couples) volunteered to lunch with me as many as 6 times and I was able to make friends I’ll keep with me for the rest of my life and get to know ward members who had even just barely moved in, not knowing a single person but still willing to volunteer to eat lunch with this Jess Smiley fellow in his bedroom.

I’m crying tears of gratitude as I write this, thinking of the time, money, and effort so many others spent on my behalf. 

10/8/19: When I visit with most friends and ward members, I feel vivified and hopeful to continue. After they leave, I use the life and hope they afforded me to continue researching, calling, and carrying on in my time alone.

My Elders Quorum Presidency even thought to set up a camera in church on Sunday so that I could participate from home. Keep in mind that this was a full year before COVID!

In April of 2021, a good friend I had made through these lunches passed away at the age of 57 from cancer, following a lifetime of serious illnesses and conditions. This man, though very sick at the time, visited me with his wife, bringing me homemade, healthy lunches, and also volunteering to clean my yard and help with housework. When I think of Heaven and of people worthy to live there, I think of my friend Chris. I want to live worthily to see my friend again.

I’m ever grateful for my Elders Quorum Presidency for their inspired direction and involvement in my life, and I’m grateful for the many Elders (and wives) who volunteered to spend some time with a struggling soul.

2020: MORE OF THE SAME BUT FEWER MEDS

Sure, I went to the ER for heart problems, my headaches increased, I met with a new rheumatologist who seemed so promising at first but who ended up diagnosing me with an “atypical presentation of something rheumatological” and ultimately couldn’t help me, and underwent extensive blood and sleep testing, but for the most part, 2020 was similar to 2019 but with a more aggressive appointment and work schedule and far fewer meds.

Without all the meds, my head seemed to clear up considerably to the point that I was able to read again and sometimes watch movies. I was able to work here and there, though it was frustrating that I couldn’t plan when I’d feel well enough to tackle a project.

I was gifted a reclining wheelchair, which proved indispensable in certain situations, and was a tremendously helpful option for the times my wheeled walker and cane weren’t enough (particularly for hospital appointments, where the room was positioned in the middle of a long hallway that could take me 20 minutes or more to walk).

FAMILY

In the spring of 2020, I started getting impressions that my family was incomplete. 

I didn’t know what to make of these impressions, as I was stuck in bed without answers, my wife was working full-time and caring for our family of 5, and my wife’s last pregnancy had rendered her bedridden and on a home IV, with regular visits to the hospital and from home health nurses throughout her pregnancy. 

When I felt I could no longer ignore the dreams, thoughts, and impressions, and I told my wife, she confessed she’d been having the exact same experiences. 

We both laugh-cried, knowing the difficulty of the situation and knowing we had a decision to make. 

In the summer of 2020, my wife and I found out we were pregnant, and shortly thereafter I lost my father suddenly to pancreatic cancer. My dad was unable to accept visitors in the hospital due to COVID restrictions, but spent his last days at home, even using some of the hospital equipment I had used for my own bed.

My wife quickly became severely ill in her pregnancy and found herself, yet again, on a home IV and requiring the assistance of in-home nurses. This was while I was still stuck in bed and searching for answers, and while our 3 children were in school.

I asked my youngest what we should name baby. She said, “Unicorn Rainbow”.

I received more injections, nerve blocks, rhizotomies, and other minimally-invasive procedures and treatments, but nothing seemed to help. I also underwent an expensive and lengthy root canal (from all the teeth-grinding during sleep from pain and stress), in a chair that was not built for comfort.

2021: THE DIAGNOSIS, THE SURGERY

MEDICAL CANNABIS

Realizing I need something to reduce my pain and allow me more function, I (finally) looked into medical cannabis—something I had avoided for years (I’ve never smoked, done drugs, or taken alcohol), but was now willing to look into as its usage was legalized in my state (Utah), because I hadn’t found relief in any other treatment, and because kratom had been such an expensive and awful experience (achy, feverish, nauseous, dizzy, racing heart, unable to sleep). 

I sought out a new local family physician who was qualified to prescribe medical cannabis (I found her on a list of Utah physicians who can prescribe such) and, after my second visit, I received a medical cannabis card.

I was discouraged to learn that doctors aren’t necessarily trained on prescribing specific types, applications, or dosages of cannabis, but rather to identify which patients are most likely to benefit from it generally. 

I’m responsible for ultimately deciding what I’m going to take, how much, and how I’ll apply it? Don’t they know I draw cartoons for a living?!

I dedicated all my research time over the next week to learning about different strains, types, applications, and dosages of medical cannabis specifically for chronic abdominal and back pain. I watched hours of videos from YouTubers with chronic pain who were willing to experiment with the medicine and relay the results for people like me. I called my local dispensary several times to annoy the pharmacists with my never-ending questions and they seemed genuinely happy to take the time to address my concerns. Again, however, the pharmacists weren’t trained to prescribe anything specific for specific individuals with specific symptoms, but to direct the general nature and effects of broad categories of approaches.

I spent something like $120 on a variety of medicines and was surprised at the results, which I journaled as I experienced them.

2/8/21:

Hygge Chews – Cherry 

-8:05pm 1.5 pieces (15mg THC, 15mg CBD)

-8:35 Feeling a building headache and fairly tired (but it’s been an incredibly busy, stressful, and taxing day)

-8:55 There’s a kind of a buzzy, fuzzy, light feeling in my head and a bit of pressure on the sides of my head near the front.

-9pm I’m feeling a similar buzz in my ankles, soles of my feet, my knees, spreading across the whole front of my head, I feel it sparking in my back and slipping down the insides of my legs. It’s a strange droning buzz that I feel everywhere except in my arms and front of my torso. There’s even a soft electric buzzing around my eyes. The voltage is churning now in most of my body. It feels like I’m floating in wavy water on my back.

-9:05 The charge now feels warm and more electric—a sharper, tighter buzz. Buzz is now above my ears. My abdomen feels some sparking.

-9:15 This current is still humming through most of my body. I feel fairly calm and relaxed. My tailbone is buzzing. I feel light, my knees feel light, the pain in my back has become a nervous energy. My eyelids are getting heavy.

-9:20 Just took my medicine. I’m feeling pretty sleepy and a pressure on my sternum.

-9:25 I could totally fall asleep right now without any music or podcasts.

-9:40 There’s a soapy taste on my tongue, but most noticeable is how I can feel my head and heart slowing down and that my head and tailbone area are buzzing like mad (much like a soft head massager).

-9:55 A pleasant heaviness and buzzing in my jaw. Feels good. I could fall asleep in a minute if I wanted to. I’ve been hearing songs, laughing, and talking, though I know none of them are real.

-10:05 my back and abdomen 

-10:25 very very tired 

-10:35 hearing crying, groaning though the house is quiet. Head buzzing hazily, tops of calves spasming, jerking, buzzing.

What I just recounted was the single best night of pain relief I had experienced in all of the 3 years and 3 months I had experienced with the pain. No medicine, procedure, treatment, or behavior had even come close to the relief I felt that night.

Unfortunately, it was my only night of relief.

Following that first night, it didn’t matter which product I took, I either felt overwhelmingly drowsy and useless, a concerning sharp pain in my chest, terribly nauseating acid reflux, and/or restlessness. 

I even spent another $100 on new and different products, but they resulted in the same unpleasant side effects without any of the relief.

I heard from many people to keep trying different products, amounts, applications, etc, but I had tried several kinds over several months and didn’t feel it was worth spending more money, time, and effort on.

So ended my trials with medical cannabis.

ONLINE COMMUNITIES

Sometime in 2019, I joined a handful of online communities dedicated to chronic and/or undiagnosed conditions.

After describing my symptoms and experience, someone in one of the groups mentioned another group for something called Slipping Rib Syndrome (SRS). Though some of the symptoms seemed to match, the symptoms overall didn’t quite fit my situation. Still, it was something and worth looking into. When several members of the SRS group agreed that my symptoms matched closely enough with SRS, I looked into doctors in my state who were familiar with the syndrome. Only 1 doctor came up and I scheduled a visit with him.

In the meantime, I created this post, in the hopes of reaching someone who might be able to offer any help or insight into my condition. 

I received an outpouring of messages and phone calls from individuals who had suggestions and ideas for me, all of which I took into careful consideration and added to my still-growing To Do list.

DIAGNOSIS

On 3/24/21, my good friend drove me to my appointment with a thoracic surgeon, who concluded that I must have something called ACNES—Abdominal Cutaneous Nerve Entrapment Syndrome. (SPOILER ALERT: HE WAS RIGHT!)

I was instructed to return to my local pain management clinic (at which I had been a patient for a year and a half) to receive intercostal nerve blocks with a localized a nerve blockade at ribs 8, 9, and 10, and to receive trigger point injections at the pain sites.

3/29/21: Last week, XXX took me to my appointment with Dr. X, Thoracic Surgeon, in Murray. It was a painful 40 minute drive to the hospital, a painful hour-and-fifteen-minute visit, and a painful 40 minute drive back—BUT I have a new diagnosis! One that I feel hopeful about and one that I’ve researched quite a bit since my visit. Dr. X thinks I have something called Abdominal Cutaneous Nerve Entrapment Syndrome. ACNES is a rare syndrome where a section of nerves that wraps around the body along the ribs is jammed into soft tissue, where it becomes stuck and compressed, generating pain for as long as the nerves are stuck and compressed. Additionally, ACNES is treated with ultrasound-guided injections that fill the area with medicine and fluid that create space around the nerves, allowing them to spread out to their former positions, decrease inflammation, and increase blood flow to the area, promoting healing. 

Unfortunately, the nerve blocks didn’t seem to help and I was told by my thoracic surgeon’s team that the doctor had nothing else to offer me. Looking back, I think there was just a misunderstanding, but I felt dejected—how could a doctor make a diagnosis, then not follow-up with additional referrals or appointments? It didn’t make sense to me.

As my wife and I welcomed the birth of my beautiful girl (a truly miraculous experience I was blessed to be present for), I researched ACNES and joined a new online group focused entirely  on ACNES. 

ACNES

It was in this group that I learned of a highly recommended ACNES specialist—right in my state and just 4 hours away. I called immediately and was thrilled to learn that his practice accepted my insurance, though an initial appointment was nearly 2 months away.

I called regularly to check for any cancelations, but ended up waiting the full 2 months for my appointment. (Meanwhile, I continued meeting with neurologists, rheumatologists, chiropractors, physical therapists, and other specialists.)

7/3/21: I have much to say about my visit with Dr. X, but the highlights are that he confirmed my ACNES diagnosis and scheduled me for surgery on July 21!

The drive there and back was rough. My abdomen, pelvis, and back are hurting terribly, but I was surprisingly OK during most of the drive. Entering the dr’s office, and especially upon entering the exam room, I felt that I had entered the temple and that I was receiving an ordinance. It was a sacred experience. 

Dr. X was absolutely shocked that I had been diagnosed with ACNES. He said very few people know about the condition—even the other specialists he works with regularly. When I mentioned it was my thoracic surgeon, he asked for [thoracic surgeon’s] name and practice. He told me a few times just how surprised he was that I already had an ACNES diagnosis before seeing Dr. X.

Dr. X tested for and received positive Carnett’s Signs at my trigger points and said that the two places I pointed to on my upper left abdomen were the exact locations where nerves exit the rectus abdominis and enter the layer of fascia on top of the muscle, which was very encouraging to hear. He said that he usually sees children with ACNES due to viral infections, and that the adults with ACNES are usually afflicted following traumatic injuries—most often car accidents, where the steering wheel is jammed into the victim’s rib cage—though he also does see ACNES in patients who have had prior surgeries in their abdomen. I laugh-cried when I told him I got it from throwing up 😂 

Dr. X said that, because I haven’t had prior surgeries in the area, and that because the source of the pain was so clear, I have a high rate of success with the proposed surgery, where he will “ream” the expected inflammation and scar tissue, and remove the two nerves we identified. He wants me to pay careful attention to the pain, to see if it radiates at all to the other side of my abdomen, in the same area. He says that many times the injury will be bilateral (even if it’s stronger on one side) and that he wants to perform surgery only once. There is definite pain on the other side, though it’s very difficult to separate from the surrounding muscle pain. He mentioned that, where my pain is so close to the ribs, and because my pain has affected my entire abdomen and back so extensively, that he expects I will take longer than average to start noticing improvement. Along those lines, he mentioned a farmer who was unable to work for 10 years because of back pain related to ACNES who returned to work the same weekend as his Monday surgery. He also mentioned a teen gymnast who was turning cartwheels the weekend of her Monday surgery. 

My second, lower blood pressure reading was 154/100, which concerned the nurse, but wasn’t brought up by the doctor. 

THE FACE OF ACNES

I was scheduled for surgery a month later, which felt like an eternity, but which eventually came.

In the ACNES group the following video was shared, featuring an interview between 2 ACNES patients with medical information provided by ACNES pediatric surgeon, Dr. David Mooney.

I can’t put into words the powerful and immediate effect this video had on me. Seeing and hearing from actual ACNES patients with similar symptoms to my own set me to tears—both for having an idea of the suffering these young people endured and for the hope these young men offered me and others in my situation.

In summary, Calvin (18) had ACNES for 3 years prior to diagnosis and surgery, and Theo (9th grade) was previously afflicted with ACNES—mobilized by use of a wheelchair and missing a full year of school before being diagnosed and treated.

Calvin says, “I was a full honor roll student, taking AP classes and now I’m held back a year.” He goes on to say, “[ACNES is] a very high level of pain to the point that I was bedridden constantly. The hardest part, I remember, was not knowing what was wrong with me.” 

SURGERY

(7/21/21: 3 years and just shy of 8 months in) I was ready for surgery and grateful for what I hoped would be the end of a 3.5-year journey for a resolution to my pain.

The surgical neurectomy took twice as long as the doctor had predicted, as he had found a lot more scar tissue than he had expected, as well as 2 more (for a total of 4) nerves that had been affected, balled up and jammed into my soft tissue.

I came away with two incisions across my abdomen and painful spasms in my abdomen. 

8/4/21: I WALKED DOWNSTAIRS!

That’s the big news for the day! I showered this morning, which is a big, exhausting event, in and of itself, but, after laying down and working for a bit, I felt that I should try walking down a few stairs and back. I got about a third of the way down pretty well and decided to keep going. [My boy] and his friend were downstairs and came out to watch, as did [my girls] from the front room. It was pretty funny and we were all amazed! LOL Mikelle suddenly showed up beside me and we just laughed and hugged. I told her how crazy it is that we’ve had a house underneath our house all these years. I toured each room in the basement and was surprised at how big the rooms are. I think it’s been since Christmas 2018 that I last went downstairs. That puts me at more than 2.5 years since I’ve been downstairs. 

RECOVERY

I was able to walk up and down the stairs in my house a few times a week throughout August, which felt almost as good as calling all my upcoming appointments to cancel!

As of the writing of this post on 11/1/21, the vast majority of pain is gone from my abdomen, and what remains is (I’m pretty sure) compensatory and referred pain from my obliques and back, which have been in “protective mode” for 4 years. 

8/19/21:

It’s been a month since my surgery and already I’ve experienced so many changes and improvements:

-I can actually lift my feet off the ground when I walk (rather than shuffling, as I used to do)
-The pain is no longer generalized across my abdomen, back, and tailbone, but concentrated in my abdominal and back muscles (it’s nothing short of a miracle that I can actually feel my muscles engaging and responding when I move)
-I’ve walked up and down all 12 steps inside my house a handful of times—something I haven’t been able to do for close to 3 years!
-Riding in the car with the seat leaned back isn’t anywhere near as painful as it had been prior to surgery
-I’m able to bend my knees a bit without suffering excruciating pain
-I’ve been slowly, gradually able to sit up a little bit more in bed and for longer periods of time

HOW GREAT IS THAT?!

I haven’t been able to do any of these things for nearly 3 years—and they were incredibly painful and difficult for a full year before that.

I’m still very much in the rehabilitation phase of recovery and am almost constantly nauseated from the pain of my body adjusting, but there are no signs of infection, and I can feel and notice so many little changes and improvements internally. I talked with my surgeon yesterday and he said he expects a longer, slower recovery because of the location of the nerves he removed and because of the extensive scar tissue he reamed and removed.

Oh! Did I mention my surgical incisions make my abdomen look like a whistling face?

I’ve put in a lot of time and effort since my surgery to increase the function, range of motion, and strength of my legs, abdomen, obliques, and back. I complete two-to-three 30-minute sessions of physical therapy each day and walk for at least an hour twice a day. I have to be mindful of each step I take—how I’m moving, how quickly I’m moving, how the step will affect my legs, abdomen, sides, and back. My incision scars are healing and (with the help of an orthopedic cushion I carry with me) I’m able to sit for about an hour each day, depending on the chair and other conditions. I’ve been working regular hours from home on a new series of books and I’ve been able to see my kindergartner off to school, as well as meet some of my lunch volunteers in an upright position outside my bedroom.

I’m meeting with the DMV next week to get my license back, I’m attending church, I got to take my kids trick-or-treating for a bit, and I even got to my home away from home—the library—to renew my card. 

I have my loving, watchful God to thank for my recovery.

I have my selfless, devoted wife to thank.

My children, my extended family, my friends, my neighbors, my ward members, my Elders Quorum Presidency, my Bishopric, Relief Society, and strangers on the internet all played vital roles in my recovery. 

BEYOND

Of course, I still have a long way to go to regain my function, mobility, and strength. There’s much I want to do with my family and friends. I have so many pictures to make and stories to tell. I’ve always wanted to travel and now I want it even more.

Quitting was genuinely never an option, but not knowing how to move forward didn’t feel so triumphant.

As I shared here, my family and I hit several low points and felt discouraged. Support and encouragement from others gave me hope and served as a reminder that I’m here for a purpose, that my purpose includes this important experience, and that my role is (in part) not to take any of it for granted. 

I’ve been asked many times why it took 65 doctors to diagnose me. Asked another why, “why don’t doctors know about ACNES?” I can relate what my doctor told me and what I’ve read from the National Institute of Health and from other patients. What I’ve read and understood from others is that the condition isn’t common enough to include in training and that even most specialists aren’t aware of its existence. I don’t know how true this is, though, as I’ve also read from the NIH and heard from other patients that ACNES is very common and that it is one of the most commonly undiagnosed conditions (how is it even measured?). I’ve talked with several people who live outside the U.S. who received an ACNES diagnosis 3-5 years ago, but who are still waiting to be treated. Others have received diagnoses but don’t feel comfortable employing any of the treatments available. Others have ACNES as the result of other surgeries and past procedures.

I should mention that music was something I could turn to often enough (at least when I didn’t have raging headaches, dizziness, and nausea). Music is good medicine. I’m grateful to my friends for, among other things, sending me music they liked to lift my spirit.

Oh! And remember those periods of “pushing through” and engaging in aggressive physical therapy and rehab? It turns out that (as helpful as these approaches could be to me now) they served to further entrap my abdominal nerves, exacerbating the problem. The doctors and I just had no way of knowing what kind of damage was being worked in the moment.

I’m grateful for my diagnosis and surgery and am well aware that there are countless others who will never receive a diagnosis or corrective treatment.

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My hope is that this information will be of some use to you—whether you’re suffering from chronic and/or undiagnosed pain, advocating for a friend or family member, or if you’re simply interested in my experience.