My story with Ankylosing Spondylitis began when I was a teenager, but I didn’t know anything was wrong. I was the youngest of 5 children and my Dad had stiffness in his spine and had to wear a support girdle for many years he couldn’t turn his neck around very well but as a young child, I thought my Dad ( he was 50 when I was born) was just getting older and had arthritis. He was tired a lot, said his eyes were sensitive, but didn’t complain of pain. He worked as a pharmacist for 44 years. I remember how he had to lift his leg to tie his shoes because he couldn’t bend over, and how he would get in and out of our car in strange ways it was only after he died when he was 80 that I started to have alarming symptoms that demanded a diagnosis. Now I know what he had and what, unfortunately he passed on to me.
When I was 13 my right wrist would get an annoying painful kink and I would wrap it to support it. I thought it was growing pains. It came and went. I thought nothing of it. The next episode with symptoms that I can recall was in college where I majored in physical education. My days were spent swimming, playing basketball, gymnastics, running, volleyball, and just about anything else that was active. I taught aerobics at a local gym and was never still. My knees started to bother me to the point where I went to a specialist who said I needed a surgery to repair ligaments. I decided I wouldn’t go to those extreme measures and let it slide. The pain and inflammation came and went so again, I thought nothing of it. In general I wasn’t as flexible as other student were. I did take notice of that.
When I went into teaching I wore high heels all day. In my 20’s I noticed that my back would ache, but it was the heels surely, so I wasn’t concerned. It wasn’t pain that lasted either.
Jump ahead another 16 years married and pregnant with my third child. In the second trimester my eye started to become very painful sensitive to light and blood-red. My doctor rushed me to an eye specialist who told me that I had “systematic arthritis.” He asked if my parents had gnarled fingers and were in wheelchairs. No. The only pain I had occasionally was in my knees. Thus began the anti inflammatory medications to save my eye sight. I had several attacks in my eye while pregnant. After my son was born, I started to experience a kink in my right SI joint. I thought I could work it out with exercise. But it wouldn’t go away. It turned to pain deep penetrating pain that was to the core of the bone and stubborn! I went to emergency I didn’t have a family doctor- doctor after doctor said it was just a bad back and I was to rest and take muscle relaxants and advil. To make a long story short, it wasn’t until my sister told me that our Dad was diagnosed with something called Marie Strumple disease that I was able to tell the doctors that maybe there was a connection. But I still went undiagnosed properly for 5 years. One night I went to a clinic with intense pain and the doctor I saw said I needed a regular family doctor asap and ordered tests for the gene that determines AS. Other doctors toyed with the idea but said it was an expensive test and so they chose not to test me. How nice! It wasn’t a week later that I got the phone call telling me I tested positive.
I had no idea what this meant really. I was scared, confused and angry. What was this unwelcomed, uninivited intruder hurting my body?!
The next part of my journey was pityful. I remember sitting in a wheelchair in emergency at 39 years of age watching 90 year old men and women walk past me thinking- what the heck? I was crushed. I didn’t know what my future would look like anymore. For two weeks I couldn’t walk or barely move. My spouse had to carry me to the toilet and bathtub, I was on three different meds at once, my days were full of crying, prayers, friends who came with meals, no answers, just pain….and dreaded muscle spasms even with deep breaths. My three children were young and their Mommy couldn’t move. It made me very sad. BUT…
At some point, I stood up straight on the inside and I got angry. I went off the prescription meds. I started to make myself move and I took every step with determination not to let this disease win. I did everything- changed diet, underwent sessions of prayer with many people, I started to jog on the treadmill through the pain. I didn’t care. I spoke to the pain like it was a robber who illegally came to take my life and I told it I was going to tell it what to do- not the other way around. I knew I sounded like I had lost it, but I didn’t- I was aggressively responding to this in the only way that worked for me. I had a choice- I could lay down and let my life become all about AS or I could get up and LIVE! One day I said out loud “A.S. … YOU PICKED THE WRONG PERSON!” and things progressed onward and upward from there. I began to understand that I could not let this thing have my spirit and soul and that I could control certain things for my body to reduce the pain in healthy ways.
I didn’t get any more eye inflammation, or inflammation in my sterum which I suffered from for two years.. I thought I was having heart attacks. Today- SI joint pain continues and I have pain in my knees and hips. I eat well and take supplements. The Master Cleans has helped me tremendously. I recently began taking Arthrotec. I work and live a pretty normal life.
It’s been 8 years since the diagnosis. On that day AS was diagnosed with ME! and I won’t back down ( pardon the pun) I walk well. I’m happy. Pain is a daily part of my life, but I minimize it’s importance and I maximize hope, faith and other parts of my life that are wonderful! I’m not afraid. I’m not weak. I’m not less of a person or live less of a life because of AS.
Saint John New Brunswick Canada