Welcome to ‘Living Beyond Limit‘, a lifestyle blog with perspectives on living with chronic illness and ideas about overcoming the related struggles in order to live our best lives. Being diagnosed with a chronic illness can be a world shattering experience and it may feel like your life is over at first, but like all things in life it is what you make it. Through the power of mindset and shared experience we can together manifest hope, strength, and a newfound sense of purpose. Join me on my journey as I create a new paradigm for my life by reaching for the things I still want the most such as health, happiness, and adventure. Along the way I hope to share with you health hacks, coping methods, money making tips, adventure ideas, and other self-improvement suggestions for maximizing you life in spite of illness. I’ll also provide you with reviews and recommendations about products and lifestyle choices that I have personally found helpful for living beyond limit.
My friends and family call me Jono (pronounced Jah-noh). I was born in the outskirts of Raleigh, North Carolina where we had a pretty fantastic wooded area behind the property which was pretty much a little kids dream to play in. As soon as I was old enough I joined the tiger cubs and enjoyed camping whenever the opportunity arose. This foundation probably paved the way for me joining the Marine Corps later on in life when I got out of high school. I only mention it because I probably had any number of times to be bitten by a tick throughout my life. The truth is I don’t even know for sure if I’m dealing with Lyme disease as the tests are notoriously unreliable. I only know that I have chronic fatigue(CFS) or you might call it fibromyalgia. I’ve had different doctors suggest its different things from Epstein-Bar virus to mycoplasma. Unfortunately CFS is not well researched and its exact cause is not always known. It can be difficult to get an exact diagnosis, a hurdle that I’m sure many of you reading this can relate to. Add to that the fact that you can carry stealth pathogens for years or decades asymtomatically as long as your immune system is robust, and it becomes nearly impossible to trace back the origins of your illness.
I moved to Boca Raton, Florida when I was 7 where I grew up as a ’90s kid who was fascinated by science and outer space. Like a lot of kids I wanted to be an astronaut and so I started going to the Ft. Lauderdale Air and Sea show every year around the time I was entering my teens. I began to develop a curiosity about aviation and the military and after two semesters of college I joined the Marines and finally had the opportunity to indulge my adrenaline junkie tendencies. I continued to study aviation in college while serving in the Marines and at the time I though I might do a career but as is often the case my goals evolved and changed in my early twenties. After a 6-year enlistment I eventually left with an honorable discharge but not before servings several years as an Airborne paratrooper with my unit.
With a fresh commercial pilot rating I took my first job in aviation as a banner tower where I flew aerial advertisements over the beaches in South Florida. This is generally considered the road less traveled in the professional pilot pipeline though because most new pilots choose to become flight instructors in order to build the time they need to work for the airlines. Now each person has their own reasons for which path they choose but not the least of which is because banner towing is statistically a pretty dangerous activity to do while flying. The reason being is that you have to grab the banner off the ground from the air with a hook which hangs off of your tail and its generally a bad idea to ensnare something on your aircraft intentionally that will increase your weight and drag. I was thrilled to find this opportunity though. It appealed to my thrill seeking nature and to be honest, I found the prospect of instructing new students to be very unappealing. The goal of any low-time pilot job is to acquire the 1500 hours required to work for the airlines and that generally takes about 2 seasons. During my 2.5 years there I had the opportunity to fly contracts across the country as far away as San Diego and the chance to listen to many books as I flew elliptical tracks up and down the beach all day.
As I finally crossed the 1500-hour threshold, I was glowing with a sense accomplishment. My identity at this point was inextricably linked with my ambitions to be an airline pilot at this point and things were moving fast in that direction. There was a severe shortage of qualified pilots to keep pace with the growth the airline industry had been experiencing. Once I applied I was called back, flown out to interview, and hired within a week’s time. I even received a nice signing bonus to boot! I felt like I was on top of the world. Soon thereafter I began the 3-month pipeline of ground training and simulator sessions that would earn me my type rating and that highest bar of airman certification – the Airline Transport Pilot certificate.
With 7 days left on the training schedule while flying the jet in the simulator to prepare for my checkride I came down with fever. I needed to be on top of my game for my check ride so I decided to suspend my training until the fever subsided and figured I would pick up with one of the classes behind me. When I reached the date that would have been the conclusion of my original training itinerary, I had to make an important decision. My fever had subsided but I was still experiencing significant fatigue and a swollen feeling in my head. I knew that candidates were routinely dropped up until completion of their type ratings so I figured that if I went home until I was completely recovered, then I might not be invited back. The Marine in me decided to suck it up and power through to the end. Despite my disadvantage I continued to excel throughout my training and come check-ride day I ended up passing with flying colors (pun intended).
I went home relieved that I passed, yet concerned that my condition seemed to persist unchanged as each day passed. I had something like another 12 days before I was supposed to report back for my first flight so I remained confident that I would surely recover by then. I’m sure you can guess what happened next. Come the morning when I am to report for duty my condition was not only persisting but it had actually gotten a little worse. You see my doctor suggested a steroid to reduce inflammation, but being that steroids are immunosuppressive, it only made things worse. Of course at the time I had very little information about what I was dealing with so it was very much a process of trial and error. Refusing to accept my predicament I stubbornly dawned my uniform. “Maybe it just needs one more day”, I tried to convince myself. As I sat in the back seat of my Uber on the way to the airport the stress began to build. Deep down I knew something was very wrong. As I’m sure many of you are aware, stress is major trigger for CFS and other chronic illnesses. By the time I got to the gate my head was pounding and I felt disoriented. I knew if I boarded that plane to travel to my base that the company would have to buy me a hotel. I also knew that if my condition hadn’t improved in the last 3 weeks it wasn’t going to be better tomorrow. With an air of defeat I had to make that call to the scheduling department to let them know I wasn’t going to make it. My first day and I had already let my company down. To add insult to injury I had to pay for another $50 Uber to go home. I should have just made this decision before I had left in the first place.
That was in August 2018. I’ve been on medical leave ever since. During the time that has elapsed it’s been both a physical and emotional roller coaster of advances and set-backs. It’s been difficult to accept that the $100,000 education that I spend almost 10 years acquiring is all but useless to me now. I’m sure those of you going through something similar can relate with you own unique sense of loss. Watching a career worth $10 million slip through away with nothing I can do about it has been devastating to put it bluntly, but in this situation I have no choice but to adopt the old Marine Corps adage of: improvise, adapt, and overcome. This blog will follow my journey henceforth as I explore all that life still has to offer and seek to rebuild a more fulfilling lifestyle than I had before.
WHERE TO TURN
Over the last few years I’ve seen upwards of 13 doctors and most of them were specialists. Most doctors don’t really want to have anything to do with chronic illness patients because they don’t really have many concrete answers for you. If they can’t write you a script to make it go away, then they refer you to become someone else’s problem. If you are going through a similar struggle you almost need to become your own PCP, or at least your own advocate. No one is going to look into your condition more than you and its up to you to do the research and find out what you need from your doctors. One answer you will discover early on is that there is no cure CFS, but that doesn’t mean there aren’t things you can do to support your body and greatly improve you condition. Also, it is possible in some cases to spontaneously recover even after many years if you take your self-care seriously, so never abandon hope! One early frustration I encountered was that MD’s would not advise on any type of supplement treatment as they are not FDA approved to treat conditions. However, we all know that herbs and plants have been used since the dawn of humanity as medicines. If you are wondering where to turn to for your treatment I suggest you skip the MD’s and seek out an Osteopath(DO) of functional medicine. They will be able to advise you on a supplement regiment and they offer many alternative therapies. Plus they are still fully licensed to provide any pharmaceuticals you may need such as antibiotics or antivirals. You will need to do your research on which alternative therapies have scientific evidence to support their efficacy. Whatever you do just make sure you have a licensed medical professional overseeing your care.
CFS affects between 836,000 to 2.5 million Americans and between 17-30 million people globally. Despite these figures, the illness remains mostly a mystery to modern medicine and ongoing research projects are sparse with very little funding. The condition is often associated in conjunction with contributing pathogens such as Lyme and Epstein Barr. Patients may also be diagnosed with similar conditions such as fibromyalgia, lupus, or Hashimoto’s disease which may all be contributing factor’s. Due to the veil of mystery surrounding the condition, patients may often find themselves searching for answers only to be left with more questions. This may often leave you feeling dejected and depressed with a dismal outlook on tomorrow. The aim of my blog is inspire, inform, and provide hope to those who are lost or even just searching for ways to get more out of life after what they’ve lost. Together we can create a community of fighters who understand each other’s struggle on the most visceral level. I encourage everyone to share their knowledge, experience, and suggestions so that we can pool together our collective experience for the greater benefit of all the knowledge seekers in our community. Together we can build the strength to live beyond limit!
Peace, Love, Unity, Respect,