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Never Give Up on Yourself
How arthritis is not going to defeat my passion for living
By Mark Sincevich

The cold autumn night sent a chill through my body as I passed through the front door of the hotel, slightly north of Atlanta. I walked slowly, shuffling my feet ever closer towards the front desk as I tried to piece together what I would say. I was in tremendous pain and I didn’t know why. I swallowed hard, took a forced breath, and asked the manager for a handicapped room. The word handicap trailed off of my lips. Secretly I had hoped that he didn’t hear the word handicap.

This is exactly how I felt when I was first diagnosed with arthritis. I secretly hoped that people wouldn’t hear me when I said the word arthritis. This was in response to why I walked slowly or had a hard time bending over. I thought that arthritis was something only older people get as a result of aging, but certainly not me. Yet here I was in the Rheumatologist’s office receiving a diagnosis of Reiter’s Syndrome or Reactive Arthritis. The pain I was in at the hotel in Atlanta was one of a dozen symptoms that confirmed my later diagnosis. .

Reactive Arthritis is one of over 120 different types of arthritis. It was first identified in World War I when our soldiers came home with asymmetrical pain in their joints. The right wrist might be painful, but not the left. It was later determined that standing in the bacterial-infested trenches of World War I for days at a time allowed this bacteria to enter the body through cuts or lacerations. The bacteria are small and often settle in one’s joints.

After a sharp pain in my right heel followed the one that was already present in my left heel, I decided to take action and see a Podiatrist. She molded my feet for two different types of shoe inserts so that the pain would hopefully lessen. When the pain subsequently increased, she told me that I must have plantar facsitis. This condition is a tear in the muscle that runs along the bottom of the feet. She said that I would need surgery to sever this muscle completely, and that I would never run again. When I heard this diagnosis, I quickly ran out of her office.

The next stop was to see my Internist. By the time I was able to get an appointment, the pain in both heels was joined by pain in the toes of my right foot. I told my Internist that my mind felt rested each morning, but my body felt as if I had been run over by a truck. He told me that since I was single young man, I wasn’t getting enough rest. He wrote me a prescription for Valium. I quickly wrote him out of my contact list.

I had come to the Rheumatologist’s office at the repeated urgings of my mother. She has had Rheumatoid Arthritis since she was seventeen years old, and her arched knuckles and twisted fingers are a testament to her long years of suffering. She knew the frustration and lack of answers I was getting from other doctors. There must be something to the advice that, ‘mother knows best.’ If I hadn’t listened to her, I wouldn’t have known what was wrong with me, and her doctor wouldn’t have been able to call in a prescription of NSAIDs to a nearby Atlanta pharmacy, close to my hotel.

I might have walked slowly and in a lot of pain going into that hotel, but after allowing my prescription to take effect, I was able to check out carrying my own bags at least. The pain was reduced, but this only increased my confusion and denial. I started to feel that I must have done something wrong to deserve this disease. I felt like I was being punished, and as more joints became inflamed in my body, I wracked my brain for answers. I was angry and embarrassed that I couldn’t exercise like I wanted to.

I had trained for the United States Bobsled Team right before I was diagnosed with Reactive Arthritis. I was able to train hard for many hours at a time, six days a week. In fact, I was squatting 565 pounds, which is over 10 very large iron plates. However, at the time of my diagnosis with Reactive Arthritis, I was barely able to squat just the straight bar that weighed a mere 55 pounds, less than 10% of my original squatting weight. To top it off, several of the toes on my left foot became deformed. Not only couldn’t I train with my former teammates, I couldn’t even fit into my athletic shoes.

I a knew that continuing to take NSAIDs was only treating the symptoms and not the cause of my arthritis. I got my hands on everything relating to arthritis and on the treatment of Reactive Arthritis. I read constantly. I learned that the disease might burn itself out after a few years, but that was in only 50% of the cases. At my Rheumatologist’s urging, I took an anti-TNF drug that got its start fighting cancer. It seemed to slow the progression of my disease, but I was concerned about its affect on some of my vital organs, most notably my liver.

At this same time, I read about a pioneering Rheumatologist who successfully used a certain type of antibiotic to treat Reactive Arthritis. My Rheumatologist was very accommodating and worked with me to try this procedure. I didn’t want to succumb to the wrong side of the 50% statistic, so I felt that I had to keep trying something. Luckily with the on-going arthritis research, I had options to assist me. I was not going to give up on myself! .

I kept exploring alternatives. I improved my diet; I made sure that I got a monthly massage to reduce my joint pain and stiffness. I found out that a division of NIH, NIAMS (National Institute of Alternative Medical Science) had conducted a study that indicated acupuncture helped reduce joint pain, so I started to get acupuncture twice a week. Also, I pushed myself hard to go to the gym and to workout even when I wanted to quit. After a few months, I began to notice small improvements.

Another improvement came when I started to accept Reactive Arthritis and all of the pain and stiffness that goes with it. I realized that it is a part of me, not something outside of myself. I worked to let my pain pass through me instead of trying to fight it. The analogy to this is that tall majestic trees must bend with strong winds to survive a storm, but those that fight the wind break apart and are fractured. I didn’t want to become a fractured person by continuing to fight my disease. I kept imagining myself pain-free and cured, so this inspired me to keep moving and keep going.

One of the things that kept me going was setting a big goal for myself. I felt that I needed to have a long-term goal on which to focus my energy in a positive way instead of using that energy to worry about my disease. Years ago I had read a newspaper article about the Kingdom of Bhutan, nestled high in the Himalayas. I was fascinated by its’ people, culture and geography. I thought that training to go on an expedition to Bhutan was the perfect long-term goal.

I trained for six months, five times per week by hiking, jogging, weightlifting, practicing yoga and biking. I made sure to get all of the preventative shots needed for this country, and I paced myself. If I over-trained one day, I took it easy the next. I visited my Rheumatologist a few times before my trip so my progress could be checked. I loaded up on a new type of NSAID and a steroid injection kit just in case I got into real trouble.

The expedition started out slowly, but quickly became more than I bargained for. I hiked through blizzards, personal dizziness and frequent bouts of dysentery. I got altitude sickness, was mentally worn-out, ate really bad food, and didn’t take a shower for nine days after hiking for 7-9 hours per day! Being so tired, I didn’t have any energy to worry about my Reactive Arthritis. I could have ridden a donkey back to our starting point with a special detail of porters, but I didn’t want to give up on myself! I kept going to complete my goal. I was in the country for three weeks. We hiked a total distance of 81 miles over a seven-day period covering elevation changes from 7,500 feet to up to 14,600 feet. The rest of the time was spent acclimatizing and participating in cultural tours.

After the hike, I remember visiting the capital city of Bhutan, Timphu, and thinking how wonderful it was to have survived this life-changing event! I felt that if I could survive this expedition, I could survive and even thrive in spite of my Reactive Arthritis. I’m a big believer that what doesn’t kill you makes you stronger. The adventure made me stronger, and taught me NEVER to give up on myself. When I check into hotel rooms now, I don’t need to ask for a handicapped room. I have learned to adapt my life to arthritis and bend in its’ painful storm. How are you going to challenge yourself and adapt your life so that you won’t give up either?

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Mark Sincevich works with organizations to develop leaders with more focus and creativity. He does this through a unique photography angle in his speaking programs and writing. Mark is the chief perspective officer of his company, Leading with Focus, and the executive director of the Digital Photography Institute. He can be reached at 301-654-3010 or www.LeadingwithFocus.com .