Those taking pills to get "high" are making it harder for ill people living in pain.

Those living with nerve pain from Charcot Marie Tooth (CMT) disease and other conditions don’t have many effective medications available for them on the market. The few medications that are available, however, are now becoming harder to get from doctors thanks to individuals who abuse pain pills.

It’s not opioids that pill abusers are taking this time, it happens to be the prescription medication gabapentin, which is one of a few non-opioid medications available for nerve pain. Recent media reports out of Kentucky are indicating that people there are taking gabapentin to get a “high” and/or a “euphoric feeling,” at a time when the government is making it harder for doctors to prescribe opioid medications. 

Now government officials, doctors and pharmacies recently announced that they will examine the gabapentin problem. The issue is already impacting people like myself with nerve problems.

At a recent visit to my family practitioner, she suggested reducing my gabapentin intake to help clear my head. No way, I thought, and then I had to remind her that my neurologist makes those decisions. I walked out of the office shaking my head and wondering what the “pill takers” will do next to make life harder for those of us living in extreme pain.

I currently take 1,800 milligrams of gabapentin per day. Four years ago, I was taking 3,200 milligrams per day after doctors found out that my CMT had severely damaged the nerve roots at the bottom of my spine.

This medication, which is also used by many with epilepsy, has never given me a “high” or “euphoric” feeling, but has helped in some ways to reduce my pain. I also have to take prescription opioids medications to this day, otherwise I will be screaming in pain at times.

Media reports in one Kentucky town indicated that gabapentin sells for only 75 cents on the street there. Users told reporters that they often take many pills at once to feel high. In my opinion, taking almost any pill in high quantities will probably get you high, but I wonder if those who abuse pain medications decided on taking gabapentin because it’s relatively a safe drug? I don’t know but I should add that many pill abusers in the article also admitted to taking gabapentin along with other types of pills to get high.

While I do have compassion for those who abuse prescription medications, I am beginning to worry that certain medications like gabapentin will one day become more restricted and harder to prescribe, inadvertently affecting those who really need them. And the only thing lately that Congress and government officials seem to agree on is passing laws that limit certain pills that are highly abused.

It just seems to me like government officials are often quick to make certain decisions about our lives and the medications we take rather than examining all the facts and asking questions. I hope they will begin considering ways to improve the lives of sick people instead of always making decisions to protect those who abuse substances.

-- Joseph Ruzich

Joseph Ruzich has Charcot-Marie-Tooth disease and has been working in the journalism field for almost 20 years. He is 40 years old and lives with his wife, Emily, in the western suburbs of Chicago, IL. You can comment at the bottom of the story or email him at josephruzich@gmail.com

Binge-Watching and Philosophy

 

By Emily Ruzich

The winter of 2017-2018 for me was filled with dread. Winters in Chicago are normally bad enough on their own, with the cold and lack of sunlight, but I had some personal problems to deal with as well. The novelty of Joe’s CMT diagnosis had worn off by that time and all that was left was the routine drudgery of it all. Some days were good and some days were bad, and there was no way to predict when the bad days would come. The worst CMT symptom that Joe deals with—nerve pain—comes in different shades on different days, but regardless, pain is pain and that is always bad.

Also, my 95-year-old father was very ill. He had suffered a debilitating infection that autumn, which had left him too weak to walk. By that winter he was living in a nursing home. Because of earlier medical complications, he was already living with only one kidney and only part of his colon intact. At that point, it seemed, optimism about his condition improving would have been misguided. His body was clearly on the decline.

The two men closest to me were both suffering—a lot—and I could not fix it. I could only help out in little ways, as caretakers do, always feeling that it was never enough. I could not cure them of the boredom and loneliness that come with being sick. As for offering hope, well, I was feeling pretty hopeless myself. I would go to bed each night not looking forward to the following day, not wanting to face the uncertainty and witness more pain and suffering that I had no control over.

During those winter evenings, Joe and I would watch the German series “Dark” on Netflix. The plot of “Dark” centers around the small, always-cloudy town of Winden that is shadowed by a menacing nuclear power plant and plagued by a series of mysterious child disappearances. All of the characters on the show are living with past traumas and dark secrets. No one appears to be trustworthy. Even the children act suspiciously.

Most of the show is accompanied by an eerie soundtrack of menacing-sounding stringed instruments. The intent seems to be to fill viewers with a sense of unease at every turn, even when we don’t know what exactly it is that we’re supposed to be afraid of.

Binge-watching this show helped me cope that awful winter. It was engrossing enough to take my mind off my problems. The dread that came with watching the characters of “Dark” try to unravel the mystery of the missing children helped me to temporarily forget the dread of living one day to the next with a sick husband and a sick father. Maybe it was a “double negative” effect. Two dread-filled experiences cancel each other out. And clearly, at least I didn’t have it as bad as the people in the show. While I had my demons to deal with, they were definitely not as bad as the mysterious evil force that seemed to have an entire town under its curse.

Once we finished Season 1 of “Dark,” we had to go through binge-watching withdrawal and patiently wait for the next season of the show to come out. We decided to give the Netflix docu-series “Wild Wild Country” a try while biding our time.  

“Wild Wild Country” is a testament to the truth of the old cliché, “Truth is stranger than fiction.” It tells the story of an Indian guru/spiritual leader and his mostly Western followers who set up a commune in rural Oregon. The series focuses mainly on the culture clash and conflicts that ensue between the commune members and the local residents of Oregon. Lots of really strange things happen. Various crimes are committed, by both the locals and the commune members, and by the end (spoiler alert) the guru goes back to India and the commune is in shambles. The guru himself, who has since died, had called the commune “a beautiful experiment that failed.”

At the end of the series, some former members of the commune reflect on their experiences and try to make sense of it all. One member compared the guru to the Armenian mystic and philosopher George Gurdjieff of the early 1900s, who would purposely put his students in difficult situations to see how they would react under pressure and help them learn about themselves.

This made me curious to learn more about Gurdjieff. I searched the internet to find out what sort of difficult situations Gurdjieff would create for his students. What little information I was able to find on this aspect of Gurdjieff’s teachings—he is much more well-known for other teachings, including the Enneagram model of personality types—showed that Gurdjieff was interested in breaking people’s ingrained habits. He would encourage his students to drastically change their diets and the times of day that they would eat, presumably just to mix things up a bit. If a person drank alcohol, he encouraged them to go dry. If a person did not drink alcohol, he encouraged them to imbibe extremely large amounts of it, just to see what would happen.

In group situations, he would insult his students and find other ways to push their buttons to make them angry, and then challenge them to remain calm. This was supposed to help them learn anger management techniques.

The most extreme situation involved thirty of his students sitting in a house for three months doing nothing but reflecting on their existence. Twenty-seven of those people could not handle it, and they ended up leaving the experiment and their teacher for good.

Lucky for me, I realized, I didn’t have to join a commune or study with a philosopher/mystic in order to orchestrate a situation that would push me to my limits. Fate had already taken care of that for me. Here I already was, on the brink, clinging to the small amounts of comfort I could take in TV shows and philosophy.

And what did I learn from this? I learned that I could handle it, although it wasn’t easy. I could live surrounded by suffering and keep on going. And while I would still have plenty of bad days filled with hopelessness and even anger at the circumstances, I could help to ease the suffering of others in some small ways.

It made me think of a time several years ago when I was the one who was very sick. I had been in the emergency room with severe stomach pains getting prepped to take a CAT scan of my digestive tract. I had to drink a special contrast fluid that would make my digestive system easier to see in the images. I don’t know what this fluid contained, but it tasted like rancid orange juice mixed with rancid apple juice and some radioactive cough syrup thrown in for good measure. I began to throw up, and there was no way I could control it. Joe was there with me, and he told me later how difficult it was for him to see me in that state. I realized that it was probably much harder for him to watch me than it was for me to be in that moment. My body was simply reacting in a way that I couldn’t control and I just had to go along for the ride.

Similarly, it is almost harder for me to remember my Dad being in the nursing home now, after he has passed away, than it was to spend time with him there last year. I was just living day to day and doing the best I could do at the time. But the most difficult part would always be leaving him in his room after my visit was over. I would feel relief that I could leave the depressing environment of the nursing home mixed with guilt over feeling this way when my father did not have the same luxury of being able to leave when he wanted to.

For me, being a caretaker is full of conflicting feelings like this. Obviously, I feel sad that my husband will continue to live with CMT. I feel sad that anyone has to live with chronic health problems. But it has also made me grateful for being relatively healthy and able-bodied, now that I see that it is not a given in life. At the same time, I question why I get to be healthy while others don’t.

I often wish I could do more to help Joe. But sometimes I don’t want to play the role of caretaker at all. I just want to forget that CMT ever existed, watch a movie, and eat some popcorn. Some days feel hopeless, when I think of how CMT will continue to affect our lives, and some days feel almost euphoric, when I am able to enjoy a good day with Joe simply for what it is.   

It is this mixed bag of thoughts and feelings that I leave you with now. Some of us suffer in poverty, some in luxury, and some in the between. You suffer, I suffer, we all suffer. And yet somehow we go on. 

Emily Ruzich is a full-time copy editor and has written many articles for publications around the country. She is married to Joe Ruzich and lives in the western suburbs of Chicago.  Feel free to send her feedback about this article. 

Christina's World of CMT

Christina's World by Artist Andrew Wyeth 

Andrew Wyeth’s 1948 painting “Christina’s World,” depicts a woman crawling in the grass near her gray and dismal farmhouse in the distance. Wyeth would observe his neighbor, Anna Christina Olson, crawling frequently around her treeless property in rural Cushing, Maine.

Ranking as one of the most iconic paintings in modern American history, it was always assumed that Olson had Polio, a common infectious disease that causes muscle weakness and in some cases the inability to move. Olson told Wyeth at the time that she preferred to crawl everywhere rather than use one of those raggedy wheelchairs of the day.

In 2016, a neurologist at Mayo Clinic in Rochester, Minnesota, decided to review the health details of Olson’s life, which led him to believe that Olson had a form of Charcot-Marie-Tooth (CMT) disease instead of Polio.

Unlike Polio which moves fast and invades the central nervous system, Olson indicated that the disease moved slowly throughout her life, affecting her feet first at age three, causing her to painfully walk on the edges of her curling feet.

Foot deformities along with a decrease of nerve sensations in the foot and toes is probably one of the most classic signs of CMT, according to medical professionals. Olson also indicated that she would burn herself while sleeping too close to the wood burning stove at night. Many with CMT also have less feelings and sensations in their legs, arms, hands and other parts of the body.

I also burn myself very frequently after accidentally touching the hot stovetop. While I do feel the sting of pain from the heat, it takes me a split second longer than the average person to pull away, which causes more cell damage than what a healthy person would experience.  

I also remember burning my toe many years before my CMT diagnosis. I don’t remember how I did it, but I do remember having terrible pain for several hours, prompting me to send a donation the next morning to a burn organization for kids.

The incident later turned into a little joke with my wife and I after we began to laugh hard during a television episode of “The Office,” when the lead character Michael Scott burned his foot on a George Foreman Grill. Scott was angry because his coworkers didn’t show him any sympathy during the episode.

One of my favorite presidents, Franklin D. Roosevelt, also may have not suffered from Polio, according to doctors and historians.  Many believe he had something called Guillain Barre Syndrome.

I was first falsely diagnosed with Guillain Barre. The syndrome, which is a bacterially induced autoimmune disease, is extremely scary because the pain hits you almost overnight and often experience temporary paralysis. 

I met a local police officer who found himself paralyzed in a hospital bed for almost six months due to this illness. Like many with Guillain Barre, he eventually recovered fully and lives a normal life again, including working on the police force. Scientists have leaned that a small percentage of people who receive the flu shot can develop Guillain Barre.

Roosevelt was 39 years old when he woke up one morning in pain and found his legs and arms to be paralyzed. He said he was out jogging the day before and felt great while doing physical activities.

The quickness of the illness and paralysis later led doctors to believe decades later that it was Guillain Barre rather than Polio, which is slower and doesn’t usually affect adults over the age of 30. Roosevelt did all he could to keep his illness a secret from the public. He would tell press photographers to “Take no photographs of me boys,” until he sat down or held his body up against a podium. It’s amazing that the press at the time respected his wishes.

One famous individual who does have CMT is Julie Newmar who played the sexy Catwoman in the Batman television show in the 1960s. Newmar recently told CMTJournal.org that she started to feel fatigued and movement began to feel tougher toward the last episodes of the television show. She later found out she had CMT. Newmar eventually learned to live with the disease and finds it helpful to stretch daily as a way to keep the illness from progressing.

Newmar, for many, is living proof that people with CMT can be superheroes.

By Joseph Ruzich with Editor-in-Chief Emily Ruzich.

Julie Newmar played the Catwoman 

in the Batman television show in the 1960s

It's not about teeth

Driving to a medical appointment 

with my wife

Charcot-Marie-Tooth [CMT] disease. I often hate the name more than the symptoms I endure from it. The inherited peripheral nerve disorder was discovered by Frenchmen Jean-Martin Charcot and Pierre Marie along with Howard Henry Tooth of England in the late 1800s.

The Frenchmen and Mr. Tooth bit me in the ass for the first time four years ago. I now get around with a cane, a walker and an electric scooter during special outings. The disease causes excruciating pain in my lower back, feet and hands. Those details I will share in a future blog because I want to use this time to bash Mr. Tooth for causing confusion about CMT.

Many individuals and even doctors have never heard of the disease. Some doctors have even told frustrated patients it’s a “teeth disease,” according to a few friends with the disease. And CMT happens to be the most commonly inherited peripheral nerve disorder, according to the Muscular Dystrophy Association. It affects about 1 in 2,500 people. That means many small Midwestern towns, for example, with a population of that amount will have at least one person with CMT.

Why aren’t more doctors aware about it? I often wonder if Mr. Tooth’s last name is to blame. Doing a little research, however, led me to find other numerous diseases and syndromes with crazy names. For example, Dandy-Walker Syndrome brings to mind someone with a “hip-style of walking.” The disease is actually a brain disorder and is named after its discovers Walter Dandy and Arthur Earl Walker.

Take the name and ego out of disease titles and disorders and the medical field will come up with more names like Pseudopseudohypoparathyroidism, which is a bone disorder. Try saying that one to a friend or a person in the medical field. Maybe the solution is to name diseases and syndromes with a title that echoes its symptoms more. I like the name Saturday Night Palsy. This disorder involves a person in deep sleep who often lays on their arm causing injury. It often occurs with alcohol intoxication, according to medical sites.

In my quest to bring about more awareness of CMT, I ordered an ink stamper with the words “Find a cure for Charcot-Marie-Tooth disease.” I now stamp all pieces of mail leaving the house.

I recently was about to do something illegal with the stamper, but my wife, Emily, put a stop to it quickly. I told her I was going to place a stamp right above the men’s pisser when I go to the restroom at the pain clinic at Rush Hospital again.  “Every male doctor will see it,” I told her with enthusiasm. “It will make them more aware and may look it up on the web. Maybe you can stamp one in the women’s bathroom.” She said “wrong idea because they will figure out it was you. They don’t have a lot of patients with CMT.”

She remembered that my doctor informed us that the bustling clinic only treats one other individual with CMT. I needed to go to a pain clinic because I had a particular bad case of the disease, which caused pain after the nerves at the bottom of my spine became swollen and could not heal themselves.

What’s next I thought for getting the word out about the disease. I recently decided to start working on forming an organization that informs people in the medical field about the disease. And the first thing I will do is make them their very own ink stamper with the words “CMT: It has nothing to do with teeth.” Where they decide to place a stamp is up to them.

-- Joseph Ruzich has Charcot-Marie-Tooth disease and has been working in the journalism field for almost 20 years now. He is 40 years old and lives with his wife, Emily, in the western suburbs of Chicago, IL. You can comment at the bottom of the story or email me at josephruzich@gmail.com