My Secret Illness

In February 2024 this website crashed for no apparent reason. Despite using professionals at it was impossible to restore anything after October 2021 (over 100 posts). I do have many of those post in draft form (no final edit or photos) and I have decided to repost them in that manner. I apologize for typos and other errors. How do I feel about losing all of my original work? Life goes on.

Today, I am going to share with you a real secret. I’m going to tell you about my secret illness.  A few people know about it, but only a few.  So let’s begin.

This is my story and is NOT meant to be medical advice.  If you have medical concerns, talk to your doctor. Everyone is different, don’t be foolish.

When you talk about any life-changing event, it is good to give a timeline.  However, this is one of the ways that my brain fails me.  I have mentioned in other blogs that I don’t think linearly. I thought everyone processed information the way I did, and I was shocked when I discovered I was an outlyer.  

I see pools of data that are categorized in various ways.  Those pools are ever-changing, as most things can be categorized differently.  The pools interact with each other and form relationships, and those relationships form ideas. Finally, those ideas form solutions. This method of thinking has advantages and disadvantages.  It is probably why I can come up with unique solutions to problems when others can’t.  However, it has a number of disadvantages in everyday life.  First, it is a slower process as I’m always “chunking” data. I will typically have a deeper understanding of a topic than most. However, learning something will almost always take me longer as I’m simultaneously processing many different relationships simultaneously. 

Linear thinkers process information more logically and use rules to govern that process. This is more efficient and beneficial in most real-life scenarios. The way that my brain works is great when it comes to complex solutions, but most things in life are routine, not complex. My way of thinking also has another disadvantage; it is hard to remember isolated facts as they don’t categorize well.  To this end, I’m terrible at remembering random things like birthdates, names, and phone numbers. 

I can only approximate dates, which I have connected to other events. Confused?  It will all make sense in the next paragraph.

A reasonable question would be, “When did your secret illness start?”  A long time ago, but I can’t give you an exact date.  However, I can tie it to an event in my life, my involvement with the Indian Princesses.  With that said, I was ill for years prior.

The Indian Princesses was a YMCA group for dads and their primary school daughters.  It has since been rebranded as the “Y Guides,” as its former title was offensive to some. Both Kathryn and Grace participated in the program.

Grace is now in graduate school. The incident happened when she was in first grade. I’ll call it the campout incident. At least once a year, tribes would participate in an overnight campout. Huge groups would gather for these events.  I recall sitting in my study, nearly in tears, anticipating a campout the following weekend.  I was devastated.   

If you know me, you are probably scratching your head.  My favorite place to be is in nature, and camping is one of my favorite things.  Additionally, I love spending time with my kids. This was an extremely well-organized event.  I would have to do this and that, but most of the event was meticulously planned and executed precisely.  Additionally, the girls loved going as there were many fun activities for them to do.  Lastly, the dads in my tribe were nice guys.  Very welcoming and decent. 

Based on the above, the Princess campout should have been something that was not only OK but something I was looking forward to.  So why was I nearly in tears?  I was so ill that spending 2 days camping seemed impossible.

What was this mysterious illness?  It took me decades to find out.  I’m a good physician, but I had no idea of the cause of my sickness. Did I seek medical attention?  Of course.  I would do this in waves: seeing doctors, going through tests, and trying traditional and complementary treatments.  Nothing would help.  I would abandon medical treatments only to return for another round of tests, sometimes years later.  Decades of being sick, many treatments, many diagnoses.  I saw multiple primary care physicians and multiple specialists.

Of course, I had all the basic tests, but they returned normal. I also had many other tests ranging from MRIs to EMGs to very exotic blood work. One doctor thought I could have MS; another felt the problem could be sleep apnea; yet another thought I was suffering from autoimmune hepatitis. I was diagnosed with a serious neurological illness, Myasthenia Gravis, and started treatment, but that turned out to be a red herring: multiple doctors, multiple diagnoses, multiple treatments. None helped, and I was seeing my life fade away. The only true diagnosis that I did have was an autoimmune neuropathy.  That has impacted my balance, so I always use trekking poles when hiking.  “Hike?  I thought you were too sick to function?” I’ll answer that question in a bit.

Could the problem be psychological?  I’m an expert here, but perhaps I was missing something.  I wasn’t feeling depressed, and I’m a pretty stable normal guy. However, I asked a friend who is a well-respected psychiatrist to evaluate me comprehensively. He concluded that my psychological state was boringly normal.

What was I experiencing?  Several symptoms, when combined, ruined my life. The first one was insomnia.  I have always been a poor sleeper, but this was exponentially different.  I was almost never able to get a whole night’s sleep.  I tried everything: behavioral techniques, over-the-counter treatments, and prescription medications.  Nothing helped.  

Incredible fatigue.  There is no way to describe the fatigue I was experiencing adequately.  Imagine you were recovering from a serious illness but no longer acutely sick.  You decide to do something simple, like showering or making a sandwich.  No big deal until you start the activity only to realize that it felt like you were climbing Mount Everest.  That is how I felt every single day. Resting had temporary benefits, but I would only go from 10% energy to 15%. If I did anything, I would drop below 10%. Along with fatigue, I had shortness of breath.  My blood oxygen levels were fine, but I felt I wasn’t getting enough air.

When you are so tired, your ability to be detail-oriented is compromised. In my case, I retained the ability to think and appropriately treat my patients.  However, routine tasks were almost impossible. I was a doctor who completed their progress notes, returned calls, and went above and beyond. I felt proud that I was responsible. However, these simple things were incredibly difficult, and so I had to develop effective yet simple solutions to accomplish these goals.  I did that using various techniques ranging from technological to organizational.  

For instance, I kept return phone call requests on a specific part of my desk.  I returned calls throughout the day to have the energy to do this simple task.  After I returned a call, I would mark the note with a slash and place it in a different pile.  When I documented the note in the chart, I added another slash to the note (making an “X” on it) and put it in a third pile to be filed in the chart. That way, I knew that I returned every call. Everything I did was like this to ensure that my patients got the best care possible despite my disability.  Some sort of method handled every routine task. Yes, it was time-consuming.

By far, my most significant symptom was muscle weakness. I can’t describe how awful this symptom was. I felt like I was dying.  I was completely weak and incapable of doing almost anything.  I wrote in my journal, “Sitting in a chair seems like an Olympic sport.”  I recalled working in a VA clinic exam room with a dirty tile floor, wishing I could lie on it as I was too weak to sit in a chair. If you understand how poorly VAs were cleaned, you will know the seriousness of this thought. A simple event like walking a block or two with my young children was impossible.  Just about anything normal in life was impossible. There are no words to describe how bad and sick I felt.  Yet, no one would know it by looking at me.  I looked perfectly normal and acted perfectly normal. I hid my illness from almost everyone.

I tried many behavioral things to cope, some minor and others drastic. One of the most drastic things I did was relinquish my partnerships in the successful clinic I helped found.  Running a clinic is a tremendous amount of work, and it is also very stressful. I thought that eliminating that stress would improve my health. I continued to work at Genesis as a contractor and made more changes in my life. I remained sick.

Other dynamics were playing out in my marriage.  Julie was a stay a home mom and did not financially contribute to the family.  I’m a take-charge guy who felt my responsibility was to support the family.

My blue-collar background didn’t afford me a sense of financial security, sometimes to the point of craziness. Many doctors rejoice when a patient fails an appointment because they now have time to do paperwork or take a little break.  When my patients would fail an appointment, I would panic and catastrophize that I must be doing something wrong and that my very busy and successful private practice was falling apart. My private practice income allowed me to spend about half of my time elsewhere working for the underserved, which was my passion. 

In addition, it was easy to compare myself to my peers, who seemed more successful than me. In reality, that was not the case.  However, that was the way that I thought. Combining my desire to serve the underserved with my fear that I couldn’t provide for my family, I worked a 60-plus hour week.  Every few years, I would rein in my workload and change my behaviors, but within a year, I would be where I started. 

Julie has her own financial insecurities, and we live in an affluent area where it is common for families to do uncommonly expensive things. Everyone was buying more or doing more than we were. Or at least that was the way it appeared on the surface. It is easy to pick a vacation from family A, add it to a new car from family B, and feel like you were not keeping up.

I often told Julie how terribly sick I felt, but I looked normal. I had a good reputation and multiple board certifications, so it was common for me to get job offers regularly, many part-time.  I would think, “Maybe I should add that new job; after all, it would only be 5 or 10 hours more a week.”  However, I couldn’t cope with what I was already doing. I would tell Julie about various work opportunities, hoping she would say that I should not take them and that I should cut down on what I was already doing. I was looking for permission to do less. Instead, she would say that I should consider them. I needed someone to put the brakes on me; that person should have been me, not Julie. It was not Julie’s responsibility to take care of me.  It was my responsibility.

Finally, at age 55, I made long-term plans to save my life.  I announced in no uncertain terms that I would retire at 65, and I started to plan for that to happen.  Julie’s dad continued working into his 80s, so I don’t think she thought I was serious.  But I was.

Then something strange happened in 2015.  A variety of circumstances joined forces, and something impossible started to happen.  I started to lose a lot of weight. I was still feeling terrible, but I started to force myself to exercise more.  I changed my eating habits and eliminated concentrated forms of sugar. I was even able to eliminate prescription meds for blood pressure and cholesterol as those numbers were normalizing. Without me realizing it, I was starting to feel better.  Yes, I had the typical aches and pains for my age, and honestly, I have never been a ball of energy.  However, I could do things, walk, ride my bike, and go to the grocery store without feeling like I was about to die. In 2018 I bought a cargo van and converted it into Violet the campervan.  The thought of exploring would have been impossible years earlier but now became a perfectly reasonable thought. The world was opening up to me.  I was walking every single day, and I liked it.  I was traveling to distant towns with my camera to do architectural photography. I was driving solo to far-off National Parks, where I would hike rocky trails. I had been given my life back, but how?

It wasn’t just the weight loss, so I initially targeted stopping my excessive sugar use.  Sugar is inflammatory, so it made sense that eliminating it was why I felt better.  It turned out that sugar possibly contributed to my symptoms, but it was not the primary cause.

COVID happened, and I slowly started to regain weight.  Additionally, I fell back into the sugar trap. However, my symptoms didn’t return.  I was still walking almost every day, going on trips, and doing things.

My mildly elevated blood pressure and cholesterol returned with my increased poundage.  My doctor advised that I restart the meds that had effectively worked in the past. I complied and thought I was doing everything right.  My blood test results were great for an old dude like myself. I was on track.

At the start of this year, my symptoms started to return, with muscle soreness and increased stiffness.  Additionally, I had ever-increasing fatigue, and my sleep became more sporadic. I started to feel short of breath. Terribly, I started to experience the extreme muscle weakness that I knew so well from the past. To say that I was devastated would have been an understatement.  I was still walking, but it was no longer enjoyable, and every step was an effort.  I was getting the feeling that I was too weak to even sit in a chair.  I wanted to lay on the floor again. Yes, I was eating sugar, but nothing like I had. Yes, I was stressed about Julie’s illness, but I thought I was coping well. My life had been going so well since 2015, but now I was sick again. 

Then clarity came to me.  I had restarted Crestor (rosuvastatin), a statin that controls cholesterol. Statins are the most commonly prescribed drugs in the US. That was around the time that I developed sore muscles and stiffness.  I knew that these were common side effects of this medication. I road out those side effects, and they did fade. I didn’t make the connection with my long-term returning symptoms.  But eventually, I did.  I stopped the Crestor, and slowly my weakness faded, I was less short of breath, my insomnia improved, and my fatigue returned to its prior level. 

I’m a medical doctor who attended one of the country’s best medical schools.  Some of my friends, who are doctors, were aware of my symptoms.  I have seen at least 12 primary care and specialist doctors over the years.  They were all smart, competent, and dedicated to solving my illness mystery.  None of us considered that an exceptionally commonly used drug could be the cause of my debilitating problems.  But it appears that it was.  Holy crap.