My name is Julia Cook. I’m from Canada. My story began when I was 21.
I’d been battling with psoriasis in my scalp. Then one day after a yoga class at the gym I woke up and could not move my legs, every little movement hurt more than the last. It was excruciating. I had come to believe that possibly I injured myself doing yoga, or possibly a previous dance or sport injury was coming out. But, how could that be? I was a healthy 21 years old. The flare up’s and the battle with psoriasis continued until one day my husband said you have to go to your doctor. I went to my family doctor and she ordered an x-ray. No one called me back with the results so I figured everything was fine. So I continued with life the best I could. Until again I was struck with more flare up’s and again I went to my family doctor. I asked about my x-ray results and they looked back at my file and saw that the x-ray indicated that I have inflammation and some bonny spurring in my SI joints indicative of sacroiliitis. I asked what that meant and the doctor said that some people can get this, but it can go away on its own. So off I went hoping it would go away on its own not even asking why no one had called me with the results. I thought that if it was serious they would have done something about it. I continued to have more flare up’s. After going to my doctor again they said that it was fibromyalgia and they would send a referral to a rheumatologist. A couple years passed. I continued with small flare-ups and I was hopeful that one day I would get a call from my doctor with the referral. Finally when I was 26 I became pregnant with my first. Within the first few months I had such a bad flare up that at work I was asked why I was waddling. They said I was too early in the pregnancy and not even showing I should not be waddling yet. I went to my doctor and was given a disability parking pass to get me through work during the pregnancy. Between the birth of my first and my second I had a bout with iritis that was very painful. Fast forward to my second child, this time it was even more excruciating from the start to the end. I had complications with the epidural (which I now understand was because my vertebra was fused slightly at the injection site so the doctor was getting blood clots). Finally I was very upset with my family doctor and I asked what happened to the referral that was supposed to be sent to the specialist? Apparently it had been sitting there for years and the rheumatologist was not taking referrals for fibro. I became very upset with my doctor because after my second pregnancy it was the most painful flare up I had ever experienced, I thought I would not walk again. Finally my doctor took me seriously after my husband had to practically carry me to the doctor’s office. They ordered another x-ray and again it came back with bonny spurring which had spread. I could not walk; I remember worrying about how I was going to take care of my new baby. Because we live in Canada I could not go see a specialist on my own. I had to wait for the referral. But this time my doctor took it seriously and she called the specialist herself with my story. But it was Christmas time and she could not see me until the New Year but my doctor asked her again if at least she could see me for a quick visit. So I was lucky I was able to get in on a cancellation. After a history and a quick check up she ordered lots of test. I still had to wait 6 months before the MRI but it confirmed that I have AS and Fibromyalgia. On my last appointment on September 12, 2012 with my gastroenterologist he said that the biopsies confirmed Crohns colitis. This has been the reason for the ongoing pain in my bowels since my late and early twenties that has only gotten
worse. Currently I’m waiting to be well enough to take Humira. I have learned so much from my struggles with AS especially that you have to be your own doctor. You can’t wait around for the phone to ring when you need help, you have to ask questions and make the calls yourself. I enjoy reading everyone’s story. It helps to have a place to go when you feel alone with your illness.
I have AS but AS does not have me.