The working life of a hospital nurse can be extremely busy, stressful, and complex. Making life or death decisions goes part and parcel with a caring heart and gentle touch. I thrived on it. Caring for a patient was my calling. Along came ankylosing spondylitis (AS) and that chapter in my life closed forever.
I was 32, a mother of two daughters, ages 5 and 3 years. My husband, daughters and I had just moved from our lives on the farm to a city; I had a new job and we knew absolutely no one in town. Needless to say, there was no support system on which we could rely. My diagnosis came relatively quickly, but hearing the news shocked me into denial. The issues that led me to seek medical attention got worse instead of better. Every morning I awoke with low back pain. Getting out of bed was excruciating because my heels were so painful that standing on them made me want to cry. In fact, there were many mornings when I did just that. Originally I thought the heel pain was from a stone bruise, as I was nearly always barefoot at home. I reasoned that the persistent low back pain was due to lifting heavy patients or bending over a patient’s bed to perform wound care or another nursing task. After a period of about six months with no improvements in either the back or heel pain I began to think there was something else wrong. In addition to the pain, I felt exhausted all the time, but easily dismissed that as an effect of my hectic work schedule and the challenges of having recently moved.
I remember the day I went to see the doctor. He was an internist; one of the physicians with whom I had become acquainted at the hospital. After asking numerous questions and completing an exam, he said he felt he knew what was going on with me, but wanted to get an x-ray of my sacroiliac joints and draw some blood for testing. Once the x-ray was completed, I was directed back into the exam room. Within moments the doctor arrived, a radiograph in hand. He said, “Mrs. Hyder, I am quite certain I know what is happening. I believe you have a condition known as ankylosing spondylitis.” That moment was the first time I had ever heard those two words. For the next few seconds my mind was flooded with questions. I felt scared and alone, relieved that I had a diagnosis, yet perplexed as to why this happened to me. I wouldn’t be able to answer that particular question for almost 15 years.
Throughout the next few months I was prescribed a variety of medications. Some didn’t work, others made me physically ill. Still I continued to work and live the life of a normal woman with a husband and children. Although the pain and exhaustion persisted, I began to deny the fact that I had AS. My husband was having difficulty finding a job in his field of expertise, and money was tight. I began to feel isolated and weary. My girls understood that something was wrong with Mommy, but because they were so young, they could not understand. I didn’t want them to feel as though they had a Mommy that couldn’t measure up, so I redoubled my efforts to make everything appear unchanged. I had always been energetic, with a positive, ebullient nature and to the world, that didn’t change. But inside, I was beginning to fall apart.
Seriously, I don’t know what I would have done without my husband. He was always by my side, ready to do anything he could to help make my life easier and more comfortable. It was he who first introduced the idea that we should consider moving closer to my family so I could have some help and support from them as I tried to get this strange and hurtful disease under control. Feeling as though I could take no more, we made arrangements to uproot our lives once again. We packed our belongings, and our little family journeyed to the Seattle area to be near my family.
The years since then have been filled with highs and lows. The disease continued to progress to the point where I could no longer ignore it and still go on living. It was then that I finally was able to accept AS as part of my life. Having done that, I set out to learn everything I could about the disease. I wanted to have the ability to control AS and not let AS control me. I found a rheumatologist, and we worked on a treatment program, constantly refining it until we found the best plan for me. I was then able to go back to work, but my days as a hospital nurse were over. I could no longer handle being on my feet for 9 or 10 hours a day. So I had to rethink my career, and come up with something I was able to do.
In 1995 I became involved with supporting others with AS. While I no longer felt alone, I knew there were other people who may be feeling that way. I became part of a small group of people involved with forming an online support group for people: FACES OF ANKYLOSING SPONDYLITIS. Family members were also encouraged to join our group, and since its inception to the present day it is one of the largest and longest running support groups on the Web.
Today, I am no longer able to work full time, but I still maintain my nursing license…just in case. My children are grown; I have three grandchildren. Now I write. And I am still living with AS – a face of Ankylosing Spondylitis — even after all these years.
A Note from the creator of Faces of AS, Cookie Hopper
“It was important for me to do this, not for myself, but for each one of the Faces on this site and those who are still unknown. I wanted to show the reality of this disease and the courage it takes to live our lives. I wanted to honor those who have Ankylosing Spondylitis, who I admire and respect.”
Creator of Faces of AS, SAA Member, and Face 0062