2008

In the fall of 2008, I began to notice my whole body hurt and I had a constant headache. My primary care physician said I was dehydrated and needed to drink more water. That was easy enough to fix had the pain gone away. I scheduled another appointment and he diagnosed me with gout. Since my father had gout, the diagnosis seemed to make sense. After 90 days my pain was no better so my doctor doubled the gout dosage to the maximum dose. Believing my pain was “normal” for gout sufferers, I continued to take the Uloric for the next 18 months but I eventually learned I didn’t have gout.

2010

In July 2010, I experienced the first of my “full-blown attacks” where I experienced excruciating joint and muscle pain, icepick-style migraine headaches and skin that felt like it was on fire. I called my doctor and told him I had been doing my own research and thought I had Fibromyalgia. He laughed. I scheduled an appointment and while my vitals were being taken, saw the notes in my chart, “patient thinks he has fibromyalgia.” I don’t think it was meant to be complimentary that I was self-diagnosing, much less second guessing all of the previous diagnoses I had been given. Ironically, the office samples he gave me for Fibro broke the cycle of the 5-week old attack. He referred me to a neurologist and a pulmonologist for workups. I actually think he was happy he could refer me to someone else; I know I was.

2011

The pulmonologist found nothing. The neurologist found nothing but agreed to do x-rays on my neck and a CT scan of my brain for the headaches. The CT was clear but the x-rays showed cervical spondylosis. I was referred to a neurosurgeon who recommended painkillers and cervical traction. I did that for a month or so but to no avail. By now it’s the fall of 2011 and I’m not making any real progress. My next referral was to a rheumatologist who, after performing what I considered to be one of the few honest attempts to find the cause of my pain, found nothing. She said the only remaining course of action she knew to take was to refer me to a pain-management doctor.

I was tired of being referred from one doctor to another and really didn’t understand the concept of pain management. Who wants to manage pain? I wanted to know why I was in pain, not manage it! Out of ignorance and defiance, I decided not to go see him. Boy, was that a big mistake. I should have made an appointment and at least talked to him, but I didn’t. That is, not until I had a full-blown attack strike on December 26, 2011. That’s when my wife called him and scheduled the appointment for me. I was so bad off I could not move, could not get up, could not walk upright without excruciating, burning pain.

2012

Long story short, It was the pain management doctor who listened attentively, demonstrated true compassion and didn’t treat me like I was psychosomatic. He evaluated my symptoms and prescribed medications that my body responded to almost immediately. In light of that response, he informed me he was certain I had some form of central nervous system dysfunction because the drugs my body was positively responding to were central nervous system pain killers and muscle relaxers. He suggested a referral to a larger hospital system, a teaching hospital that was accustomed to looking at “zebras,” the unusual presentations that were beyond the familiar illnesses seen by most neurologists in their day-to-day practices.

Unfortunately, it wasn’t long before I learned that being referred to a teaching hospital did not mean you would be seen by the teaching hospital. The doctors could apparently choose which cases they were going to accept and which cases they were going to turn away. After 90-days of waiting, I learned my referral had not been accepted. My doctor appealed their decision but the outcome was the same, denied. So, I did what every desperate person would do: I called for an appointment and began to beg. I begged and I pleaded with the woman on the other end of the phone for an appointment. By the grace of God, she finally relented and found an opening on the schedule where I could be seen by a resident instead of one of the “real doctors.” I told her I didn’t care who I saw as long as I could see someone.

The first appointment with the resident at UNC was outstanding. After she interviewed and examined me, she called in the “real doctor” as I was in a full-blown attack with lots of physical evidence to evaluate. Out of that came lab tests revealing para-neoplastic antibodies, so a search was begun to locate a possible cancer as the cause of my illness. A CT scan revealed a mass in my chest that was consistent with a thymoma but, after it was removed, it was determined to be a benign enlargement of the thymus gland, called thymus hyperplasia. Had it been malignant, the diagnosis would have been Myasthenia Gravis or MG. Unfortunately, the removal of the hyperplasia did nothing to improve my symptoms. Oh yeah, a word of caution, I also learned that hospitals have their own “formularies” which is nothing more than their accepted and prescribed list of medications to be used on patients while in their care. One of the drugs that was working so well for me was not on their list (Baclofen, a CNS muscle relaxer) and nobody told me prior to surgery that I would not be given that medication while in the hospital. Shortly after surgery (and lung deflation for access to the hyperplasia), the muscle spasms in my back and chest returned with a vengeance and I couldn’t breathe or tolerate the pain. All I could do was cry in agony. I don’t remember how long it took before they decided I could take the Baclofen I had with me but it felt like an eternity.

2014

After being treated at UNC for 2 years, I was referred to Johns Hopkins in Baltimore, MD. It was 2014 and my illness had progressed to a point where working, teaching, counseling and any form of physical activity were no longer possible. The referral to Johns Hopkins took nearly 6 months only to end with another 6-month battle with the insurance company over covered treatments and care. Once the insurance company agreed to pay for the recommended IVIG treatment, the doctor at Johns Hopkins decided there were other risk factors present in my lab workups and he wanted to refer me to an oncologist for a blood cancer workup. Ultimately, I was sent home with two new neurological diagnoses (Small Fiber Neuropathy and Peripheral Nerve Hyperexcitability), as well as a new diagnosis of blood cancer (Polycythemia Vera). After an oncologist in Wilmington determined I did not have blood cancer, the doctor at Johns Hopkins was no longer comfortable approving or administering the IVIG therapy due to his lingering concerns with my blood.

Over the next 3 years, I remained in the care of the pain management doctor who never gave up trying to help me cope with the pain as well as manage the symptoms of these CNS illnesses. Honestly, I was tired of searching for answers and spending money without getting any real answer. There was an overwhelming sense of hopelessness in accepting modern medicine’s inability to do anything more than prescribe drugs that sedated, numbed and removed me from among the living. Ironically, my wife mentioned looking into CBD oil in the 2015/2016 timeframe, but I refused to even consider discussing it because I believed it was marijuana (oh, how ignorant I was).

2017

But in August of 2017, my oldest son called with the news, “Dad, I’m sick, just like you.” He had been struggling for 18 months with the onset of pain and fatigue but I honestly never believed he would fall prey to the same illness (turns out it is genetic). Have you ever heard the story of putting a frog in a pot of water on the stove? It goes like this: put a frog in a pot of water on the stove and slowly turn up the heat, he will sit right there until he cooks; put a frog in a pot of boiling water and he will immediately jump out. That call, though it was disconcerting, was my pot of hot water. I had been sitting highly motivating and served as the genesis of two things: 1) a renewed search for hope outside the bounds of traditional medicine; and 2) the formation of Restoration Hemp LLC. Between the two lay 15-months of trial and error, searching for answers and exploring options that ultimately led to our discovery that cannabidiol oil—CBD—was able to accomplish what modern medicine had been unable to accomplish…the restoration of a body and the rejuvenation of a spirit.

2019

Out of my own time of darkness now comes a body and spirit passionately determined to share hope, both physical and spiritual, with those who are experiencing a darkness similar to my own. Know this, you don’t have to go it alone. I’d love to speak with you to encourage you and share the rest of my story. In short, by the grace of God, I am no longer taking the opiates, narcotics or seizure medications that I lived on for nearly 10 years and I’m 95% back to my old self.

I like to tell people I’m on the “Take My Life Back” tour. I once was dead, now I’m alive. I encourage you, do not give up, think positively and react with purpose; you are your own best advocate. If you are experiencing a time of darkness, remember, it is always darkest before the dawn. My journey eventually led to the creation of Restoration Hemp. Learn more.