How Michelle's Chronic Medical Conditions Helped Create TripMutts

None of this would be possible without brokenness.  No redemption story ever arises from lack of conflict.  If wisdom is born of adversity, then I have earned the incoming streaks of white hair on my head.  I do not mean to suggest that the world has been against me.  On the contrary, I am well aware of my privilege and the opportunities I have been afforded throughout life.  We each experience the struggle of human life in different ways, yet we all struggle.  The Bible tells us that God can use all things for good.  It does not say He caused bad things (our own sin, a fallen world, and a spiritual enemy do), but if we give Him our brokenness and trust Him to use it, He will.  It does not mean we get away unscathed, or that our personal journey on this earth has a ‘happy ending’.  The ‘Story’ however, is far greater than any one of us individually.

This is my own reminder to get out of my own way.  Out of my head.  Out of my self-centered views.  The world does not revolve around Michelle.

Several elements were necessary for the creation of TripMutts: my chronic illnesses and our diet, the adoption of our 3 rescue mutts, and the foster and adoption of our daughter, Delaney.  We have experienced God working in such incredible ways through our lives, and I am so thankful.  I would not change even the most painful parts in my life, as I have been in awe of how He has used them to bring beauty, family, and deeper understanding into my life.  My faith in Jesus is stronger now because of the trials, not in spite of them.  I have learned to never give up on redemption, healing, and restoration, no matter how bleak the situation may appear.

The story I am about to share begins around 6 years ago.  There would be no TripMutts without it.  Our lives, as we are currently living them, would look very different.  It actually starts much further in the past, but for the sake of time, we will start near Nic & my 10-year wedding anniversary, and focus on one piece of the puzzle: my physical health.  I will circle back to the intertwining of mental and spiritual health in a future post.

For context, I need to explain that I developed Crohn’s Disease in the Navy in 2005, hospitalized with acute pancreatitis in 2007, diagnosed with Celiac Disease in 2009 (found out in 2012 that I tested positive in the Navy and was never told), and spent the first 6 years of my marriage too sick to work much out of the home.  In 2012 we moved to Nashville, I began immunosuppressant therapy, my Celiac went into remission, and I was able to return to a ‘productive life’.  Trying to make up for lost time, I worked 40-60 hours a week in corporate retail, went to school nearly full-time, and launched a foster-care ministry with Nic.

Michelle Cubicle

I should also mention that I have always carried a feeling that my days were numbered, with a desire that I needed to have the most positive impact I could, while I could.  This has caused me to feel an urgency in situations that, in hindsight, may have required a slower pace and more thought to the impact on those around me.  Some people that know me well joke that I only have 2 speeds, ‘fast’ and ‘stop’.  It’s not untrue.  Though, I would like to think, I have learned to slow down and prioritize self-care much more these last few years.  I am still human, after all, trying to find a steady rhythm between extreme ends of the pendulum.  God is not done with me yet.

So, back to the story.  My Crohn’s Disease and Celiac Disease were in remission, I was experiencing odd progression of seemingly unrelated symptoms.  My bladder stopped working, resulting in 2 emergency room visits, followed by several awful tests at the VA Hospital and Vanderbilt to determine the cause.  I was diagnosed with an ‘atonic’ bladder muscle, which basically means the muscle was not contracting, causing urinary retention.  The fear was that I may have developed another auto-immune disease, such as Multiple Sclerosis (MS), so I was referred to Neurology.  This was the second autonomic muscle to stop functioning correctly.

Ooops, I just realized I have to skip back in time for a moment to 2009-2011 when we lived in Orlando, FL.  

The first muscle to stop functioning correctly was the top portion of my stomach muscle which was diagnosed as Gastroparesis via a nuclear study.  This was the time in my life when I had to stop doing dishes and bending over to pick things up, or I could not keep my food down.  I also struggled with eating enough calories to sustain my weight due to slow gastric emptying, leading to a nearly all liquid Ensure Plus diet.  Not-so-fun fact:  I was approved for a J-tube for night feedings to bypass my stomach, but was unable to have the surgery scheduled before our move to Nashville.
It may have been something of a miracle that I did not have the J-tube surgery.  After our move to Nashville, the VA Hospital was backed up and could not take new patients for 10 months.  I was on chronic long-term steroids at high doses and required regular bloodwork, so my Florida doctors were not comfortable continuing to refill the medication.  Out of desperation, and a desire to heal, Nic and I started the Paleo diet (Auto-Immune Protocol).  To have the most benefit, it required grass-fed & finished beef products, and pasture-raised chickens, which led us to finding local farms to source from.  (Spoiler…. This is part of the TripMutts story, too!)

Okay, back to the timeline.  Neurology continued the workup, while also listening to the strange myriad symptoms and medical issues I was experiencing.  I could not even start to count how many different tests were performed.  An MRI of my brain and spinal cord came first, to determine if MS was indeed the culprit. 

Instead of receiving the MRI results, I received a phone call from the VA that they had an emergency referral to a neurosurgeon at Vanderbilt. 

 

Full stop. 

 

Close your eyes and imagine that a muscle of your body stopped working properly, one you cannot control, you are going to Neurology looking for possible MS lesions, but instead of results you get an urgent phone call that mentions neurosurgery….
(wait, isn’t that brain surgery?)
…. And you find out from someone who only schedules appointments and has no other information. 
How would you feel? 

 

I may have felt panic, except that I have a 1in pineal cyst in my brain.  I already knew about it, and it is just an incidental finding occurring in 1-5% of the population, mine is just larger than normal.  I realized the Neurologist did not know this and may be concerned. 

So, I laughed, shook my head, and called Neurology to tell them not to waste time and money.

Instead of cancelling the referral, I was told that is not the reason I was referred.  Now concerned, Nic and I went to the appointment to learn they found 2 possible cysts (syrinx) in my spinal cord.  They needed to make sure the cysts were not blocking spinal fluid or doing damage to the spinal column.  The location, both upper back/neck, meant that if they start to grow, it would damage the spinal column from the inside out and I could become paralyzed from the neck down.  It was a ‘wait and see’.  However, it was not blocking spinal fluid, was not putting pressure on anything, and not the cause of my current symptoms.

Back to the drawing board.  Next was a QSART study to check my autonomic nervous system through the use of electrodes placed around my body.  The study positively identified small fiber neuropathy, with no sweating.  The results were so low that I seriously questioned if they even turned on the machine (they did), or if the electrodes were even attached (they were).  Not sweating was not such a shock, to be honest.  I realized I had stopped sweating some years before, but could not quite pinpoint when.  It was most likely a slow progression and I just did not notice it stop completely.

My neurologist had an idea one day to check my copper & ceruplasmin levels.  The results showed a severe deficiency.  We now thought we had found the issue.  Copper deficiencies can wreak havoc on the body, and I was already losing feeling on my hands and feet.  GI did not believe it was related to my digestive diseases, though I have to disagree.  Since they would not help figure it out, my Neurologist stepped up to the plate to work with me.  Next step was trying supplementation.  Every supplement made me sick, so I changed my diet drastically to high copper foods.  Do not offer me sunflower seeds, I’ve had more than my fill for a lifetime.  Nothing worked.  I had genetic testing looking for Wilson’s Disease, which came back inconclusive.  Although we pressed for a liver biopsy, the liver specialist continued to deny it.  I know a lot about copper, the different issues that can create the deficiency, and how it works in my body.  I am more knowledgeable now than all but the rare doctors who study this particular issue.  I have to learn and study in order to effectively advocate for myself and make the lifestyle changes necessary to balance the myriad issues and retain a quality of life worth living.

At this point, my neurologist began telling me I needed to take my health more seriously.  I have a bad habit of rolling my eyes, making a few jokes, and pushing forward in life.  Although I do a lot of research and put things in practice, I also have a tendency to know I only have so much control.  Sometimes I just want to live and not think about the medical struggle.  I want to ignore the symptoms and create a life where I can forget I have limitations. 

Several of my doctors had recommended I lower stress and stop working to focus on my physical health, but productivity in society has always been important to me, so I would shrug it off.  Lower stress?  I am a type-A personality. Working is important to me, more important than physical comfort.  So, I continued to shrug it off.  Then my blackouts, which were sporadic, became frequent.  Very frequent.  I used to love the heat because it meant less pain, but now I was heat intolerant.

In 2016, Nic and I celebrated our 10 year anniversary at Sandals Ochi in Jamaica, and we had a massage.  I could feel that massage.  In 2018, only 2 years later, while still trying to figure all this out, we went back to Jamaica, had a massage, and I broke down crying when I realized I could not feel my skin.  At all.  I knew my sensory neuropathy was spreading, but a piece of my mind did not want to accept what was occurring. 

Nic & Michelle in Jamaica

The blackouts (pre-syncope) were becoming more frequent, and I became a fall risk.  After testing, I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS).  Still thinking this was copper related, I was scheduled for 8-hour days of copper infusions.  The first few days did nothing.  So, we extended it to a full week of infusions.  My levels dropped more.  There are no recorded cases in medical literature, or not up until this point, of this ever happening unless the copper was accumulating in the liver or brain.  I developed an arrythmia, with heart palpitations and what felt like my heart skipping beats and squeezing my chest.  I now had a cardiologist added to my long list of specialists.  I was referred to an Autonomic Dysfunction doctor, as these are all parts of the autonomic nervous system.  Unfortunately, we learned he is unable to diagnose the root-cause of the autonomic dysfunction, though he was the one that discovered I was progressing towards Pure Autonomic Failure (PAF), with only orthostatic hypotension left to seal the progression into the diagnosis (this progressed within 2 years).  He can only help manage symptoms, and quality of life, so he helped by prescribing medication that would lower my heart rate (It could spike 60+bpm just from sitting to standing).  I would take salt tablets and drink water by the gallons, just to keep my blood volume high enough to keep blood flow to my brain.  I avoided my triggers, and adjusted to my new limitations.  Later, another medication would be added to the list to help with fluid retention and increase blood volume.  Keeping blood flowing to my brain upon standing and walking was a priority. 

Side note, if you meet me in public and I am standing, there is a good chance I cannot fully see you.  My vision is blurry or gray/shadows while standing, and it is more difficult for me to retain information.  I try hard, but I still have blood flow problems to my brain when upright.  I may not remember your name, or recognize you in that moment, so help me out here.  It’s not you, it’s me.

My Neurologist again suspected possible Wilson’s Disease, sending me this time to the ophthalmologist to look for Keiser Fleischer rings (copper-colored rings).  If they see the rings, it would mean copper was accumulating in my eyes.  They did not see the rings.  Instead, they found my pupils were not dilating evenly.  What should have been a 10 minute appointment turned into 4 hours that day, followed by 6 hours the following day for the neuro-ophthalmologist. 

I met with the neuro-ophthalmologist, an older gentleman, who arrogantly walked into the room without looking at me, told the other doctor “she was probably born with it, what is she doing here”, and ready to dismiss me.  Thankfully, I knew that this pupil issue was new for me, and had to have progressed within the last year.  I advocated for myself.  I explained I have optic nerve head drusen since early childhood (my right eye was photographed for a textbook with the University of Pennsylvania), and have had my eyes and pupils checked many times.  He finally threw up his hands and said “fine, do the test on her, but I’m telling you it isn’t going to be anything, it’s probably just incidental”.  They put drops in my eyes (historically topical cocaine was used for this), and sent me to the waiting room for 2 hours while the drops worked.  I called Nic and asked him to come to the hospital, as I knew the doctor assumed I was a hypochondriac and had not looked at my medical history.

The test came back positive for acute-onset Horner’s Syndrome.  My right eye was not dilating.  I found out I probably did not need Nic, though I am still glad he was there to bear witness to this next piece.  The doctor, seeing the result of the test, sat down to look at my medical history, and became fascinated.  He turned back around, eyes wide, and smiling.  Yes, smiling.  I will never forget what he said. 

Wow!  You never see the rare cases in practice.  It’s like the odds of finding Big Foot, Sasquatch, or the Loch Ness Monster, and yet here you are with all these different things!  Fascinating!  You seem to be intelligent with a good grasp of your medical conditions, so what we are looking at is acute-onset Horner’s Syndrome.  I’m not going to sugar coat it.  The causes are all very serious.  Neurology will have to determine what is causing it.  They’ll have to look for tumors hiding behind the lungs near your shoulder, but I would bet money the cysts (syrinx) in your spinal cord are growing.  Normally these are end-of-life situations.” 

He continued to make bets on the possible serious causes, while I was trying to process this new information I did not want.  He asked to see me back in 6 months.  Not because they had anything to do or check, only because he was curious what my other doctors would discover.  I declined that follow-up.

I instead argued, because that is what I do best.  “Isn’t the pupil autonomic?  Couldn’t it just be part of the dysautonomia?”  And his response, “No, I’ve never heard of that and have never seen that.  It’s something putting pressure against the optic nerve running down into your chest”.

So, that kicked off a full body PET scan, looking for tumors, MRI’s checking if the cysts were growing, and when neither of those came back with anything, back to thinking it’s just part of the dysautonomia.  I have since learned that it can be part of Pure Autonomic Failure, although many doctors are not familiar with this.

From 2018 – 2019 I went through several more traumatic medical events.  I had a meningitis-like episode, so severe, this triggered PTSD, and is my most serious medical trauma.  I say ‘like’ because my immune system was too compromised to do a spinal tap to confirm the diagnosis.  I was given IV antibiotics for meningitis, and began improving.  My brain never fully recovered.  I am keenly aware of the difference before and after.  Not long after, I had a mini-stroke while driving on I-65, thankfully able to use my right hand to pull over on the side of the road, while my left side was limp.  I found a 3-inch mass in my breast, and only at the urging of Nic did I go to have it checked, which prompted an emergency mammogram and ultrasound.  Thankfully, it was just a very large cyst.  It was also during this time that I found I had developed an anaphylactic allergy to hemp, first from a full-body rash after trying CBD oil, and then taking a bite of a new gluten free bread Nic brought home, and having an anaphylactic reaction.  I am thankful I immediately knew the signs and what to do for a severe food allergy.  We found out the bread included hemp seeds.

With the PTSD and a progressive depression, I started psychotherapy with the VA.  I’ll talk more about this another time when we delve into mental health, but for now I just want to mention that it was during these sessions that I realized I needed to stop working and focus fully on my health.  I had started collapsing without warning, had severe fatigue, increasing neuropathic pain, and struggled to walk from one end of the hallway to the other without help.  I was also angry and toxic, which I, at the time, thought was due to workplace issues, I now realize was a combination that included grieving several losses in my life – loss of dreams, futures, and things I loved to do.  I felt I was losing my sense of purpose and identity.

So, what does all this have to do with TripMutts?  When the VA surprisingly increased my disability to 100%, and I gave my notice at work, Nic and I were discussing how to move forward.  I knew that walking carried a fall risk with injury, but I was not ready to give up my mobility and become wheelchair-bound.  We discussed adopting and training a dog to become a service dog, as an already trained dog was well out of our budget.  Nic did not want any pets, including dogs, though I always did.  He finally relented, he chose Ella, and we adopted her from Proverbs 12:10 Animal Rescue the day after I turned in my notice.  I worked from home for the next several months while finding and training my replacement, with Ella by my side.  Two days after ending employment, we adopted Roxy, as we discovered Ella wanted a playmate.  Ella loves her daddy, and Roxy is a momma’s girl through and through.

I research everything.  I love learning, and figuring out how everything connects.  I needed something to keep my mind engaged, and I wanted to make sure I was taking care of our pups the best I could.  I began reading, listening to podcasts, and studying everything I could related to dogs.  Although we acknowledged early that neither Ella nor Roxy would make a good service dog, they changed our lives and our hearts, giving me space to heal.  They brought a joy into my life that had been missing.  Within the next year, we would adopt Delaney from foster care, and adopt Winnie for her emotional support.  Yes, 4 girls in just over a year (1 human, 3 dogs) were added to our family.

I mentioned that we began sourcing grass-fed beef from local farms when we moved to Nashville in 2012.  We ate the Paleo Auto-Immune Protocol diet strictly for around 6 months before our schedules became too busy.  It made a HUGE difference.  We still ate much healthier, and only sourced meat from local farms.  We were already eating organ meat at this time, as heart and liver had a lot of the nutrients my body needed. I know our diet played a role in keeping my copper levels from dropping even further, as well as increasing absorption of other essential nutrients.  In one of our farm orders from Peaceful Pastures, we ordered a ‘surprise’ 25lb bag that included beef fat.  We had no idea what to do with it, so we Googled and learned about tallow.  It’s so fascinating!  If you have spoken with me about our products, I may have overwhelmed you with information, and for that I apologize.  I should have written you a novel instead.  Wait… that’ll come later!  ;)

We began cooking only with tallow, making a huge batch about once a year, sometimes only once every 2 years.  Grass-fed tallow, along with organ meats, helped to save my life.  The severe deficiencies I had, not just with copper, but with B12 and iron, were not responding to anything except red meats.  We believe there is something genetic at play, affecting absorption and transportation of nutrients, though my doctors and I have not put all the pieces together yet, and it’s possible we never will.  By the time the pandemic occurred, Nic had taken a sabbatical to help me at home, and I made the decision to stop taking my immunosuppressants.  It was already a decision made with my GI team, as continuing would only increase my risk of aggressive small intestinal lymphomas, and studies have shown that remission after 7 years on the medication is likely to continue for at least several years following discontinuation.

At some point in 2020, my copper levels reached normal limits.  I could tell before receiving the results, as I had started to regain feeling on my skin.  Instead of numbness, with no feeling, however, my skin feels more like a rugburn, irritated, and I do not like to be touched.  I now can feel my levels dropping too low again when the sensory neuropathy starts spreading.

I am not ‘healed’ or ‘cured’ by any means.  I still struggle, have bedrest days, severe pain, and sometimes have medical events crop up, like my most recent hospitalization from an ileus (basically my intestines stopped working for a few weeks).  And, although I stopped working in the corporate world, I was never content to just ‘stop’.  I still have a lot left to give, even if it is not the normal structured workweek.  Thankfully, as a family business, my husband is working right beside me, until we are able to hire employees.

To sum up this short novel, TripMutts was partially born from medical-necessity, as progression of illnesses prompted our dietary changes, leading to our consumption of tallow and organ meats.  Otherwise, the ‘accidental’ creation of our Licky Tallow Treat would not have occurred.

Any questions?  Did I bore you to sleep?  Can you relate?  Are you wondering what is wrong with me (answer: a lot) … and when will I hire a content writer that is concise?  Stay tuned…

God is not finished with this story.

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1 comment

Hey there. Love your story and your persistence in finding your cure. I live in Joelton and just have our fur babies a package each of your beef heart treat. They literally scarfed it down!! Then I sprinkled your yummy formula on their food and another scarfing occurred! I’ve also fought a number of health issues that I’m still working on. Thank you for sharing your story. I’m going to place another order!!!!

Rosalind Shiver

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