My name is Candis Pittman-Hamilton, I am 30 years old and live in Georgia, USA. I have had AS by my guesses around 14 years now, but was only diagnosed 9 months ago. It’s amazing, looking back, all of the things I made excuses for over the years. I blamed everything on being overweight almost my entire life. In my mind it made sense that this caused my back to be very stiff and painful, to have trouble with my knees, that my feet would hurt immensely from standing too long, or walking too far on a school field trip. For almost 14 years this was my train of thought. It seemed strange, yes, to be so young but not be able to do many of the things other people could do. But in my mind it’s because I was never as physically active. I did not, however, have a reason for my chronic GI irritation. My internist reasoned that I just had IBS and it was likely nothing to worry about.
So many times I seemed to respond different, physically, then others my age. We took a field trip to Washington DC my junior year of high school, and after a tour that lasted about an hour and a half, my feet were hurting so badly I was sitting anywhere I could to take the pressure off of them. I blamed my shoes, although they had never caused problems before.
I got married in 2008, then in 2010 gave birth to a most incredible little boy. When it came time to get my epidural the anesthetist was greatly annoyed that I was crying in pain just from her pressing my vertebrae, feeling for the proper place to insert the needle. I kept apologizing and saying I didn’t know why, but her fingers felt like knives. She also had some trouble putting the catheter into place in my spine, but eventually got it in. I also couldn’t walk for about two days after delivery, my pelvis and hips just felt too weak.
Unfortunately due to a series of health complications, we lost our sweet son at 7 months old. When he passed away as you can expect my entire world came crashing down around me, along with my health. My husband and I took a trip to Florida just before I was to return to work, staying with friends and trying to keep our minds off of our grief. We went to Disney World for the day as our friends could get us in for free. After about an hour of walking around the park I had immense pain in my lower back, hips, knees, ankles and feet. I was getting stiffer by the step, with my pain multiplying by the hour. By the end of the day I could barely walk. My husband and friends kept offering to push me around in a wheelchair and I refused. I kept arguing that I wasn’t disabled and that’s just embarrassing when there are people who need them way more than I did. The only thing that made me feel better was a long, hot bath that night, but that trip still took me days to recover from. Yes, at the time even I realized this wasn’t normal. None of our friends were as incapacitated as I was. But when I recovered I let the whole thing slip from my mind.
Returning to my nursing job after losing my son was more difficult than it had been previously. It was always hard to stand for long hours, reach, bend, push and pull so much. Now it was harder than ever. I made a change to a desk nursing job.
I’ve always been a research nerd and learning about new medical conditions has always been fun for me. One day when I was bored at work I went to research a condition one of my patients had that I didn’t understand well. I pulled up the disease database on my computer, and then began reading about other conditions that started with A. I saw the words Ankylosing Spondylitis and thought to myself that I knew it had something to do with the spine but I wasn’t sure what. When my eyes began scanning down the article, reading about the chronic back pain and stiffness, peripheral joint problems, and often associated bowel problems I froze. I sat there in total shock, but I knew. It was only then I realized all of the problems I had been arguing away for so many years were not normal after all, and I knew I had this. I came home and told my husband. I picked up the phone and told my parents. I told close friends and coworkers. I knew I sounded like a crazy person, but I knew I had this disease. I scheduled an appointment with a rheumatologist and I’m sure I sounded like a crazy person, asking for x-rays and labs before my visit to streamline the process. He was curious enough about this strange girl to humor me by ordering the HLA-B27 antigen along with x-rays of my sacroiliac joints.
The insurance plan I had at the time would post lab results on the website. I saw the bilateral SI joint sclerosis, then on our way to a party one night, I saw the results, that I was B27 positive. I was once again stunned and didn’t know how to feel. On one hand I felt happy, knowing what the problem was and that I possibly didn’t have to suffer with this anymore. On the other, I may have to suffer with all I had been going through, and possibly much worse, for the rest of my life.
I am currently on Humira, Mobic, and Tramadol. They definitely help, but they far from fix the problem. My pain and stiffness has been much worse in the months since losing my son. My rheumie told me that stress will really take it’s toll on my joints, and I see it daily. I am now in search of a nursing job I can actually do, because the bills have to get paid. But between avoiding standing, pushing, pulling, bending, stooping and lifting, and avoiding sick people (due to the Humira), it is a real struggle to find a nursing job I am suited for. It’s also a struggle not to let this disease rule me, but I am getting there, one day at a time.
Georgia United States of America