- C
- J
- S
As many of you know, My husband, Mitch, has been struggling both physically and
emotionally with chronic pain for over 8 years with no diagnosis or relief. When we met, at
the ripe age of 20 & 23, he had minor back pain seemingly caused by nothing significant.
Over the years we visited doctors only for them to request MRI’s and xrays, tell us they
didn’t see anything and send him on his way to physical therapy. He consistently went to
physical therapy, and participated in at-home exercises for 2-3 years. Each year, his pain
increased and we began to see a decline in his physical ability to accomplish simple tasks
such as hold our toddler, and participate in family outings like go to the zoo, or the park.
We began to schedule visits with back surgeons. A handful never even called us back after
our first appointments & several follow-up attempts made on our part.
Finally, we met a surgeon that identified Mitch has what is called “partial sacralization” on
his left hip bone. He said we could do a $50k+ invasive and out-of-pocket surgery that
would have only a 50/50 chance of improving pain, but would not at all improve his mobility
and that he would need another surgery every 10 years of his life. Though this was a
milestone moment in his search for a diagnosis, this was just one part of the puzzle as the
surgeon noted that many Mitch’s pain and symptoms seem unrelated to this diagnosis. We
kept looking at different options.
We continued our difficult search for a doctor who would not tell him he was “too young” to
feel the way he did, or “it’s just the depression having a physical affect on the body” or “go
to physical therapy”. Finding quality care without health insurance made matters worse.
Time and time again, we would wait months to see a specialist, only for them to request a
new MRI, and xray, wait additional months to go over the results, and be sent to physical
therapy again. By this point, he had spent years taking & withdrawing from mild opioids
prescribed by doctors, not knowing what the best route was to end his pain.
At this point, his pain was increasing, his mental health wearing thinner by the day and he
spent more and more days miserable and struggling. It took him longer and longer to get
out of bed each morning. His body stiff from laying in a still position for hours. A part of his
waking up routine became morning stretches, and yoga only to be followed a few hours
later by more extreme shooting pains, and stiffness from minor activity throughout the day.
His depression plummeted. He visited a psychiatrist and went through the lengthy process
of trying several anxiety/depression medications that left him feeling worse than when this
journey began. Another year passes and he found it more difficult to work a 9-5 desk-job in
downtown STL and he decided to become a freelancer and work from home.
As a freelancer, he took many work-related trips via flight. Each one more painful on his
body than the last. They always led to sleepless nights, muscle tightness and severe
abdominal pains. I accompanied him on the last work flight ever took. He thought his bodily
reaction may be a result of nerves and I would be able to assist him. The entire flight felt so
long and unbearable. Just sitting there, watching his face, wince in pain each time the plane
dipped or bounced. I hoped with some sleep and rest, he would recover. The next morning
after arriving, he was unable to move. Crying in pain lying on the hotel floor after trying to
put on his shoes. He told me he could not feel his fingers. They looked swollen and he
described a “needle pain” all over his body. I stared at my husbands body in agony on the
floor, panicked. Not knowing how to help him. We called the agency he was supposed to be
meeting later that day and explained to them his condition. Luckily they sent over a
wheelchair. Little did I know that would be a lifesaver for us in the years to come. Though in
pain, he powered through his work weekend and the next unbearable flight home. Upon
arriving home, we had discovered he had 6 ruptured discs simply from the air pressure of
the airplane. Yet another thing taken away from my husband. No more vacation or work
flight. His depression swallowed him yet again.
One night I can remember so vividly, I took my daughter to a dance class alone. He had
been having a rough month of anger, depression, and loathing and I thought alone time
would help him decompress. White waiting outside the class, I received a text from him that
he was going to end his life. I did not know what to do. Do I rush home with my daughter?
Do I leave her there? Do I call the police? I kept him texting me long enough to finish the
class and rush home. The night ended with him on a call with The Suicide Hotline. We
begged him to check into a rehab for mental health until he got on his feet again. There was
no convincing him. He was the main financial provider for our family and he did not want to
stop working.
More and more defeated, Mitch refused to go to any doctor appointments. He did not trust
doctors, and he wanted to give up. His self esteem was non existent and he was convinced
he deserved his pain. He didn’t want help.
After much effort, I encouraged him to press on in his search for answers. If not for him, but
for me. Wanting a new approach, we had a consultation a Hollistic Practice, and he
withdrew from the pain medicine a final time. Stool Samples, blood work, Xrays, Weekly
visits, vitamins, supplements, a paleo & gluten-free lifestyle, 12 months, and 5k later, the
only thing that was determined was that he had a “Leaky Gut”. By this point, he was losing
more and more weight, had no muscle mass to lift his legs while lying on his back and his
bloodwork showed his body was not absorbing protein. His limbs were weak, he often
experienced numbness and tingling sensations in his neck, arms, knees, fingers and toes,
followed by burning, tightness and what he called “needles all over my body”. His Entire
body was now affected.
Sleepless nights for months on end became a common occurrence. When he did sleep, he
would often cry in agony the entire night. He would describe vivid dreams of him dragging
himself on the floor, no feelings in his lower body and no one helping him. I began to fall
into my own set of mental health problems. Why couldn’t I help him? Why do I get to be
pain free? How do I stop feeling guilty for being happy when he cant be?
Next, we visited rheumatologists, had skype calls with a lyme disease specialist, ruled out
cancers, visited two pain management centers. Nothing. No relief. No diagnosis.
We have purchased massage packages, chiropractor memberships, float spa rewards, and
cryotherapy sessions in an effort to bring him just one minute of relief.
That brings us to now. He is no longer is able to work the grueling hours at a desk his
career requires. His pain causes him months of sleepless nights making it impossible for him
to have a routine. He cannot receive disability because he has no diagnosis. He often
describes disassociating and having to be “out of his body” and not present in life just to
cope. To exist.
To unconditionally love and support my husband in sickness and in health, I have began
working full time. I am the “bread winner”, the care-taker, the manual laborer, and all of the
above that my little family requires me to be.
I fear my husband may not live a long life to see our daughter grow if we do not get some
answers. His pain seems to be a domino effect . One ailment leading to another, and
another, and another.
I can see the changes this pain has had on the man I Love. I can see every day how his light,
and positivity has diminished.
In my eyes, he is the strongest human I have ever met. But I would love if for just one single
moment he didn’t have to be strong. I would love for him to know what it feels like to not
be trapped in a failing body, to be able to be fully present while playing with his daughter,
to not be gaslit about the way he feels by medical professionals that are supposed to help,
or to be told basic human healthcare is not a right.
I am asking for HELP to save his life.
Our next (and hopefully last step) is to take him to Mayo Clinic in Minnesota so he can be
diagnosed and gain some semblance of life. It will cost $5,000 to just get started, because they do not take out-of-state medicaid and I am asking family and friends for support.
I know these are hard times for everyone and I appreciate anything you can give. It would mean so much to our family. Thank you for reading.
Jessica McCullough Myers
Jessica McCullough Myers
Organizer and beneficiary
Jessica McCullough
Beneficiary