Living with Spondylitis

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We have organized these stories into two categories: Your Stories -- stories sent to us at the Spondylitis Association of America -- and selections from The Faces of Ankylosing Spondylitis project. You will also find episodes of “This AS Life Live!” an online talk show for people with AS hosted by Dan Reynolds – an AS patient and lead singer of the rock band Imagine Dragons.

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My Surreal and Deeply Emotional Day

By Jim Weatherhead

Friday, January 1, 2016

My Surreal and Deeply Emotional Day

I did not see this coming. I bubbled up with tears of joy as I left a meeting room this afternoon… Here is the story, personal and from the heart. I am in a warm place tonight.

In 1984 after about ten years of strange, intermittent, and unpredictable incidents of severe hip and heel pain, with relatively minor low back pain and stiffness, my general practitioner, Dr. Grant, sent me to the University of Minnesota for a consultation which led me to the diagnosis of Ankylosing Spondylitis. The old saying, “It was the best and worst day of my life,” is exactly how I felt. Great to finally know I was not crazy, and yet, because of my mother’s advanced condition staring me in the face, soul flattening knowing what my future held.

About a week later I was sitting in Dr. Grant’s office, staring at a Target store sign across the street. I was waiting to discuss the self-hatched treatment plan of a strong, athletic, intelligent, and highly motivated person. My entire life had me watching my mother suffer beyond anything I could truly understand. I knew well the high stakes of this battle and vowed to cure myself with diet, exercise, and positive personal energy. I was NOT going to end up like my mother, and frankly, I knew I was not strong enough to live as she had been forced to in her 40s and 50s.

I was desperate. Dr. Grant patiently listened to my plan. Then he said these words, “You must live well and stay active no matter what.” He followed with something like, “but make no mistake, you have a severe case of an incurable disease. You’re going to have to change your occupation, your expectations, and prepare for a future that is not going to be one you would choose. You are going to need to take strong medications to treat this disease.”

I was in denial – staring out the window at the Target sign across the street thinking, “I’ll prove him wrong. I’m not a fool; I know it will be hard, but I also know that alternative and naturopathic treatment combined with my resolve will beat this thing. I will be able to fix this. My mother could have done this if she had known what I know in these modern times of the 1980s.”

Over the next few years I would follow my own treatment plan of an unyielding and fanatical approach to diet, exercise, pushing through pain, supplements, fasting and more. I would explore every healer’s theories (new and old); investigate possible causes such as bugs (I prayed it was simply Lyme disease), bacteria, food or environmental allergies, viral infections, fungus, and more. However, as I painfully learned, each great new cure I would investigate was usually a failed and repackaged theory of the past.

I got progressively worse; my pain had become constant and debilitating. My future began to look bleak, and my mother’s crippled posture became one I now understood more than I ever could have dreamed. I could see the “how could that happen” question being slowly and painfully answered. I was losing to this disease and it didn’t seem that anything could really touch its root or calm it down. I had seen x-rays of my scarred and narrowed hip joints, my fused SI joints, and fusing lumbar vertebra. I had been shown the glowing radioactive images of my entire spine, inflamed like a Christmas tree pelvis to neck.

It was 1988; I was back in Dr. Grant’s office staring at that same Target sign waiting for him to come in. The discussion was very frank - it was time to go to the Mayo clinic and start accepting that I was not in control, this disease was. I had started to use NSAIDs, and finally Prednisone which became my go-to drug and would remain so for 20 years. Yes, the disease was indeed in control; it had become very aggressive and progressed considerably over those last four years. I had been bedridden by pain for months on end. I could barely walk due to hip and foot pain; my spine had daggers of pain taking hold. I was in serious danger of losing my job and had already left my love of land surveying behind for a less physical job in traffic control inspection and design.

As I stared out the window at the Target sign Dr. Grant was talking about hip replacements and wheelchairs being in my future. How I needed to find a low stress office job; that my hours would need to be cut back and/or my work schedule would need to be more flexible. I was 30 years old. I was also advised to think ahead, and plan my finances for a move to full disability. Dr. Grant then told me that he was leaving for San Diego and that he’d refer me to a new doctor in his clinic. After we finished up he said goodbye wishing me well. We’d had a very good relationship and I think he truly cared for me beyond simply as a patient. I broke down, I felt so totally cheated and defeated. I was losing everything and I so missed my old physical self. I looked at the damn Target sign and wished I had a gun. It was the first time I had ever thought (seriously) about taking the easy way out… I was now beyond my denials and had dived right into hopelessness.

The Mayo visit in 1988 was a game changer for me. I met with a very passionate and knowledgeable rheumatologist who was able to rekindle my hope with promises of future advancements in medicine. He said they were years from release, but showed tremendous promise at a cellular level. We talked at length about strategies to keep moving and working. He warned me that I needed to stay away from narcotics, always keep moving, and learn to rest ONLY when needed. He couldn’t promise that I’d save my hip joints or avoid full fusion, but he said I could save my posture and that I was doing a great job considering how much fusion I already had. He then prescribed a disease modifying drug (Sulfasalazine) that, while taking months to take hold, eventually got me back on my feet. It was all that was available at the time short of gold salts which I refused to take.

Yoga, breath work, bicycle riding, swimming… I quit drinking, and committed to a balanced, healthy diet and lifestyle - the strategies that emerged from my years of self-treatment and my disease control delusions. I moved with a job transfer and began a relationship with a great primary care physician, whom I still see today. I was very fortunate to maintain employment in a relatively low stress, flexible, research and design, environment.

This is not to say that the next 27 years didn’t include terrible pain, frustrations, and challenges, but the road was understood. I accepted that I didn’t have control of the disease, but that I could, with help from good doctors, be a good manager of the disease. I will not be able stop it, but I can have a positive role in my long range prognosis. I’ve lost 18” of colon, I’ve been within hours of death due to infections, I’ve had surgical corrections of my feet, I’ve got aortic scarring from inflammation, I’ve had my eyes impacted, I’m fused from hip to neck including my rib cage, my neck is a mess – it sounds like busted glass rolling around in there and it barely moves enough to safely drive. In the late 1990s cancer drugs were prescribed to knock down my overactive immune system; they made me very sick and did not help.

Then in 2001 I went on a biologic drug (TNF inhibitor) that changed my life; I can say without hesitation that I am a Remicade poster boy – in part I feel because I have lived well and stayed active as I waited for my miracle drug to be born.

Today, some 28 years after I had wished for a gun, I found myself sitting in that very same office looking at that very same Target sign. It’s no longer a doctor’s office, but an engineering office and I was there as a Sr. Project Manager, advising and reviewing preliminary designs for a new light rail transit line being planned and built by the Metropolitan Council.

After the meeting was finished I stayed in the room to reflect on the emotions that were bubbling up as I gazed out the window at that same Target sign from 30 years ago. I thought about Dr. Grant and those very scary first years on this journey to a now satisfied mind, and the odds of me finding myself sitting here today in that same office, nearly pain free, fulfilled, and truly happy. I did not know the precise location of this meeting until I walked into the building and easily climbed a set of steel blue stairs, stairs I had struggled mightily to climb back in 1986 with my feet screaming in pain at every gingerly taken step because I was too stubborn to take the elevator.

This was a special day I never saw coming. As I left the room, taking a last glance at the Target sign, I had tears of joy bubbling up and a soul overflowing with thanks. I am truly blessed. AS is not something I would wish on anyone, but I understood today that my reward for all my decades of hard work fighting my demons and this disease is not that I have survived and prospered, but who I have become.  

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