My name is Liz Skuce, and I have Anklylosing Spondylitis. After many years of struggling and complaining to many Drs about fatigue, chronic lower back pain, stiffness (mornings and evenings) and a low immune system (pretty bad when your coworkers nickname you Typhoid Mary), things finally came to a head with my first iritis flare in October 2011. I woke up with a swollen, red, itchy eye. Thinking it was pink eye, I went to the pharmacy and loaded up on pink eye drops. However, after 2 days it got progressively worst. Any amount of light was excruciating, and any movement of the eye felt like someone rubbing sand paper directly on my eyeball. That evening, my husband took me to the ER. I wore sun glasses even though it was evening (insert Corey Hart…) and had to ask for a dark room because the lights were making me nauseous and my vision was blurry. I saw the ER Dr who after examination, told me I had a really bad case of conjunctivitis and sent me home with a prescription for antibiotics. Since I found it too painful to keep my eyes open, I used my husband as a guide and in his absence, ran my hands down every wall to guide me when walking. I was terrified because I felt I was losing my vision, but grateful that I had what I thought, was an answer. However, 24 hrs later the antibiotics were not making any difference. The pain was so bad that I went back to the ER. Luckily, the Dr made the right call and got me in to see an optomologist within an hour of my arrival. After a quick assessment, she told me I had iritis and used dilation drops on my right eye. I learned iritis wasn’t something to mess with because it can lead to a permanent loss of vision. Within 5 mins, I felt some relief as I felt my iris slowly peel away from the lens. Trust me, when an iritis flare gets to that level you feel everything. She then sent me for blood work, booked me for X-rays and an MRI. She put me on steroids drops (every 30 mins) and cream (every hr), and booked a follow up for the next day. Between those 2 appts the questions finally came. Was there any family history with Anklylosing Spondylitis? Yes, my sister has it. Have I ever had blood work to test for the HLA B27 gene? No. Well, my blood test came back positive for the gene. She then asked if I experience fatigue, stiffness in the morning and evening? How long? I think I went undiagnosed for so many years because of the “male” bias towards our disease. Interesting how of a family of 9 biological children, none of the boys have it. Now 3 of us girls have been diagnosed with it, but I digress.
Following my diagnosis, little did I know that my iritis flare was the first to trigger many flares to come, coupled with many trials of different medications and a rapid loss in mobility and flexibility. My flares took on a whole new level of pain each time. My last one had me bedridden for days because any movement felt like lava pouring down my back. I spent 12 hours breathing as shallow as possible praying and begging for mercy with every breath. Each inhale felt like a rack of spikes compressing tighter and tighter on my chest. Again, I digress.
It is as though my iritis flare kicked over an angry hornets nest. Little did I know that within 2 years, I would rapidly become the shell of who I used to be. A strong and confident career woman used to working in a fast paced environment. A mother who kept an immaculate house and drove her kids to multiple activities throughout the week. A mother who could have it all. A successful career, hobbies, interests, the “mother energizer bunny”. Well, as I continued to try to do it all, my body took matters into its own hands and it all came crashing down within a matter of years. I went from a woman who enjoyed running and weightlifting to a woman who now walks like a robot at a snail’s pace, with the help of a cane from time to time. The woman who looks 39 on the outside, but moves and feels like a 90 year old woman in private. Thus, it should be of no surprise that with this final major weight on my back, it led to a spiral of depression; accumulating in a physical and mental burnout that took me a full year to crawl out of. Do I hate this disease and what I feel it robbed me of? Most definitely! I hate how I have to ask my kids to get a pot or pan from the lower shelves. Or in my worst flares, how I need my husband to help me get dressed and to/from the washroom or, I contemplate if I really need to wipe my ass because just trying to reach around makes me scream in pain.
I joke that I like to wear slip on sandals because I live on the West Coast. When in reality, it is because more often than not, I can’t bend over to get my shoes on in the first place. However, like many trials in life, it has also given me many good things in return. I have greater compassion, empathy and understanding for those who struggle from life’s many challenges. I can also appreciate the strength it takes to face them. It has forced me to slow down and smell the roses. I have learned patience and to ask for help when needed (still grudgingly learning). Most importantly, it has made me available to my children in ways I think I didn’t before. I’ve learned to laugh at myself as I rock my “domo arigato” walk and a “David Bowie” look from time to time, and to just let things go, like a messy house. It gives me a whole new appreciation for those days I do feel good and a whole new appreciation and love for my husband who has been by my side every painful step of the way. Finally, it has been a catalyst for change in many areas of my life where it was most needed. It may have robbed me of a many things I enjoyed, like my previous career, but it has pushed me into pursuing a new career that feels much more in line with my inner values. Yes, I do wear the face of AS, but it is a two-sided face of both good and bad that I am learning to wear as best I can. I don’t know what it will continue to take from me, and so I do fear my future, but I also have hope. Hope that a cure may be found and hope that no matter what it takes from me, I can continue to focus on the good it provides in return.
I hope my story provides information, but most of all hope. Just keep on swimming, swimming, swimming:)
British Columbia, United States of America