Millie J. Cannon
My name is Millie. I was diagnosed with AS at age 28. I am now 60. I hesitated in sharing my story because I didn’t want to depress the young people here who have discovered they too have AS. The stories here reminded me the pain of my first years with AS. I woke up with a stiff neck the week of high school graduation at 17. To turn over in bed, I had to support my head, sit up, and than lay gently on my side because my neck pain was so unbearable. The pain left after a few months but afterwards,I heard a grating sand sound each time I turned my head.My big toe became painful and x-rays found a hairline fracture. By age 18, I had very difficult time walking. I felt like I was constantly walking in sand and had no muscle tone or power. I was very stressed out at the time having been married only five months and things were not going well. I woke up one day about a year into my marriage and found my left collar-bone hurt and had sunken in. I could not let my arm hang at my side because the pain was so great. I hurt through my whole body. If I raised my arm to brush my hair, I hurt between my shoulder blades. I was out of work then and finally saw a chiropractor who said I had the spine of 80-year-old. My Achilles tendons began to hurt and I could hardly walk. Running a bath of hot water was all that relieved my pain. My hair became brittle and I lost weight. Our house at the time had a black mold problem on the walls of the rooms we weren’t heating; I don’t think this was good for my health either. At 21, I finally saw a doctor who did blood work. I was negative for Rheumatoid Arthritis, so they suggested that I check into a hospital for further tests. I had no insurance or money so I did nothing. I marched around my living room to John Phillip Sousamarches and pulled myself up on my toes by holding onto the built-in bookshelves. I had foot pain and swelling but could walk in shoes with a bit of heel to take the take pressure off my Achilles tendon. By 22, I had a full-time job that involved walking all day, standing, bending and occasional lifting. I had nothing but a little morning stiffness and just radiating pain in my outside ankle bone when driving.I ended the unhappy marriage and moved to a new town and a new job.
With a new job, new town, new man, I turned 25 in October, and remarried the following April. I had my daughter at age 26.I had Sacroiliacpain during my pregnancy but have had none since. I believe that carrying the baby was some kind on traction.After she was born, I ached all the time between the shoulder blades which I attribute to nursing and trying to get safely out of a rocking chair while holding an infant. Chiropractor visits only made me hurt worse and I became very sore. When my daughter was about 2 years old; I tried playing a game of badminton only to end up with a hairline fracture of my neck. The pain was terrible. Sometimes my daughter would bump my chin when sitting on my lap. This would dislocate my TMJ joint and cause intense pain. Having an active toddler was difficult as she was much faster than I was. I made a harness and leash for her to wear when we walked on the pier at the beach. It was pink and cute but people still stared at the woman who didn’t hold her child’s hand. It hurt to bend down but they didn’t know that. I went to a new doctor who advised me to take 15 aspirin a day. Nothing stopped the pain and my ears rang from the aspirin. My doctor said he felt that what I had would clear up but it might take a year. I waited but it only got worse. My collar-bone began to hurt again. On my last visit the doctor injected cortisone directly into the joint area. I left there and found a rheumatologist on my own. At 29, I was diagnosed with AS on my second visit to the rheumatologist. For the next 5 years I tried Motrin, Naprosyn,Clinoril, Feldene, Lodine, Celebrex and finally, Indocin. I learned to live with the pain. As long as I didn’t laugh, cough, or bump into someone, I was ok. This was the most painful time of my life. I worked full-time in a construction office where I was able to move around during the day. I took no drugs for pain with the Indocin as my job called for alertness and accuracy. Nights were horrible. I would fall asleep on my right side. My hip would go numb and begin to hurt. I would turn over every 30 minutes and after a couple of hours of this I would get up and walk around, or sit in a chair until I could get some relief.
During my daughter’s middle school years, I had a difficult time again with walking, stooping down, and climbing stairs. My husband installed dual hand-rails on the 3 steps in our split-level home so I could pull myself upstairs. During this time I often had thoughts about accelerating and hitting the brick wall of my carport. Pain can wear you down. Finally at age 38, I saw a psychologist which helped me deal with the chronic pain and other issues in my life.
My brother asked that I get a second opinion as he was tired of seeing me in so much pain. I made an appointment with a rheumatologist at UNC-Chapel Hill and they verified that I did indeed have AS and suggested physical therapy. When I returned to my regular doctor and told him I had sought a second opinion, he asked me what I was doing for the pain. I was so upset! I had no idea that I could have been taking Tylenol with the Indocin for the past 10 years. This sounds silly or stupid but no one had said you can take both medicines at the same time! My collarbone began to hurt again and one sleepless night, I swore if I lived ‘til morning I was going to get some real help. My family doctor called in some strong painkiller and got me into see a different rheumatologist. This doctor had a great bedside manner and also doubled my dosage of Indocin. Feeling heard and cared about by my doctor helped. I had been living with AS for about 20 years at this point. When I hurt, I soaked in the bathtub and read a book to take my mind off myself.Every single vertebra was sore to the touch. My husband would give me a strong massage and lift my shoulders away from the bed which felt great. For the first time in my life, I could sleep all night. For the most part, I took only Indocin and Tylenol for pain. I reached out and talked to others with AS. When young people asked me when would they stop hurting, I didn’t want to say “Oh you’ll feel better in 5 or 10 years,” so I just stopped talking to them, rather than lie.
My next health problem was a broken rib caused by an early morning coughing fit. My ribs were at this point fixed in place. The pain was sudden and excruciating, with chest pain on the right side of my ribs just under my bra. An X-ray confirmed that the rib was broken and displaced. It took 6 months to heal. I was prescribed Albuterol to help me breath; I have used it off and on since then.
That same summer before my 45th birthday, my right knee swelled up to twice its normal size and Azulfidine was added to my Indocin regiment.My brother died that fall;I was depressed as we had worked together and he had always been there for me. My daughter graduated from high school and went away to college. My marriage of 20 years fell apart but I still had my job and good health Insurance so healthcare was not a worry for me then.
The last 12 years have been “the best of times and the worst of times. “I had a bout of Uveitis that lasted several months. I was able to go to the Uveitis clinic at Duke Hospital for treatment and my eye eventually cleared up. I began Methotrexate at that time which helped with my eye. My knees began to hurt a lot in 2007 and again I had muscle weakness. Walking and standing for any length of time was problematic. My Sed rate went way up. I’ve fought to stay active and have gone on humira injections the past couple of years. I have tried to keep to a schedule that keeps me moving around every day. I own and operate a small bookshop with a coffee bar. This makes me get up every day and keep going.
I have lived with AS for 42 years now and when I read the stories of some of the young people here, it makes me cry. I do not believe I could have stood the pain some of you are talking about. I had a lot of these things occur but not all at the same time. Some of the things that have worked for me are that I quit eating beef about 18 years ago and found I could turn my head from side to side again. I feel better on a no starch/Gluten free diet but have a hard time sticking to it. The three times I’ve had a Uveitis flair I was around cat dander but also very stressed out. Ultimately, each of us has to do what works for us. I hope my story encourages you to know you can survive this when giving up is not an option.
Good luck to all of you,
Millie J. Cannon
North Carolina, United States of America