My Walk to Fight Ankylosing Spondylitis (AS)

Part of my walk to fight AS is writing this blog. I was inspired by a need or desire to overcome challenges associated with AS.

What else do you do when life hands you lemons?

My family doctor has given-up (anti-inflammatories have been a flop) and I have a 3.5 month wait to see a rheumatologist. Lucky for me, my wait is almost up and I get to see the specialist at the end of June. In the meantime, I am taking my health into my own hands and doing something about it. Why wait for doctors… I am going to get a head start 🙂

What is Ankylosing Spondylitis (AS)?

AS is a long-term (arthritic) disease that causes inflammation of the joints between the spinal bones, and the joints between the spine and pelvis. It may eventually cause the affected spinal bones to fuse together. AS is a form of spondyloarthritis, a chronic, inflammatory arthritis and autoimmune disease.

Genes seem to play a role in having AS. I have a couple of uncles who had this disease and they are no longer with us. Not that they specifically died from the AS, but it sure complicated their lives. I watched my mom’s brother end up in a nursing home and lose his ability to walk. I watched my grandmother care for my uncle into her early 70s, until she lost her battle with cancer. She was determined to care for her son and I would do the same for my children regardless of age. However, I don’t want my mother/husband/children having to take care of me, I want to fight this disease.

Most people think I am too young to have arthritis, but the disease most often begins between ages 20 and 40, but may begin before age 10. It affects more males than females.

My Journey

The disease starts with low back pain that comes and goes.

I was 17 when I began having lower back problems. I just attributed it to improper lifting and bad posture. In the beginning, the lower back pain would come when I rotated or did a sharp movement. I tried playing tennis and golf, and even tried to start running. I would end up 2 weeks with my “back out”. My “back out” meaning that I wouldn’t be able to stand up straight and had a real problem with extension. The best feeling ever is fetal position. I just stopped trying to get active and dealt with the back pain.

As time went on, I would have random “back out” episodes. It didn’t take much to irritate my lower back. If I did too much bending/lifting/rotating it was like my lower back would wind up until I couldn’t move again for 2 weeks. I saw multiple chiropractors and the pain would eventually subside, but always return at random moments. I just dealt with it.

Then I had children. With both pregnancies my back was fine. I had no problems. It was after having the babies that the pain had increased – not a surprise with all the lifting mother’s do. I remember I lifted my first-born baby out of the crib when she was only a few months old and that was it, my back had enough. I could hardly carry her down the stairs and had to call my in-laws for help. Every 2 months I would have these recurring back issues. The pain would go away and eventually return. Doctors, chiropractors, and physiotherapists told me that I needed core strengthening. I tried doing exercises, but my back problem persisted. I gave up and I just dealt with it.

I went to massage therapists who would work on my inflamed lower back and I would walk out with extreme bruising. The doctor did blood testing and they couldn’t understand why I bruised so bad in that area, so I gave up with trying to understand and just dealt with it.

I felt great with my second pregnancy and again no back problems. Even after my baby was born I felt great (that was 13 months ago). I even started working out again and getting active. When my second was 5 months old my husband and I decided to take a break for the day and go to a water-park. 1/2 way through the day we decided to sit down for lunch. When I got up from the table I could hardly stand straight due to the stiffness. I had felt so good for so long and I just ruined it with going to a water park… I knew I had a back problem, but what was I thinking? I was thinking I would like to be a normal 28-year-old enjoying a warm summer day with my husband.

From that day forward the pain persists. I wake-up in the morning and have approximately 2 hours of stiffness in my lower back and hips. I had to stop going to the gym because everything irritates my back and would end up needing help to care for my children. I started getting extremely fatigued when my back was inflamed and that just added to the back problem. Physio again assumed the back problem was a core strengthening issue, but when I couldn’t even manage a pelvic tilt without my back going into severe spasm it was time to see a doctor.

The worst part is I look okay to many people. When I am sitting I am okay, it is when I get up from sitting (or any other position) that I hurt. It is like my back freezes in positions that I maintain for extended periods of time. My first week back to work from my second maternity-leave was brutal. I didn’t think I would make it. So instead of just dealing with it, I did something about it.

My Walk

Making dietary changes has been the biggest help. Within 2 weeks of eliminating/replacing certain foods I was able to tolerate work and the stiffness has been greatly reduced. I look to allergy-free foods to help reduce my inflammation. I have yet to start exercising as I am still fearful in disrupting the work I have done. Vacuuming my house it still a challenge, so I take it easy with the exercise until I get to see the specialist.

This blog is part of my walk because I get to take others on my journey and make something positive from the more difficult cards I was dealt. I don’t ask for sympathy because I am truly fortunate in life, I have a ton of support, a great job, lovely home, and a beautiful family. Everything in life happens for a reason, so I need to go with the flow and keep doing my best.

The Arthritis Society

The Arthritis Society is Canada’s principal arthritis health charity empowering the nearly 4.5 million Canadians with arthritis to live their lives to the fullest by combating the daily limitations of arthritis. In the last 60 years, The Society has invested more than $175 million towards arthritis research to develop better treatments and, ultimately, find a cure.

On Sunday, June 10, I am participating in Walk to Fight Arthritis. I am walking and raising donations to support nearly 4.5 million Canadians who live with the pain and disability caused by arthritis. Please consider donating to me and supporting this important cause.

If you would like to donate, please click on this link to do so online: http://arthritis.akaraisin.com/pledge/Participant/Home.aspx?seid=4757&mid=9&pid=959610