A.S. Face 0552: Julia Cook

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.


8 Responses to “A.S. Face 0552: Julia Cook”

  1. I am sorry to hear that you are going through this. However, your story is a true testament to why it is so important to be your own advocate. I used to be the same way…sit back and wait for the doctor to do something. However, now I am persistent and keep pushing them to get things done. We do not have the luxury of time when it comes to this disease. Thank you for sharing your story!

    Kim – Face #108

  2. Wonderfull story Julia. (say, that didn’t come out right) I meant lousy story about your doctor ( I can’t believe the refferal was laying around all that time), wonderfull story of advice and warning to other AS’ers. Finding out what’s the matter with us…is so important…I think all us FACE’s can relate to that. And to have that “discovery moment” delayed cause of bungling…just gets me mad.

    But, perhaps the time for getting mad is past. Now that you’ve got your diagnosis, and can start your treatment, I gots a feeling that AS isn’t gonna have you much longer.

  3. Thank you so much for the kind words. It means so much to me. In Canada there isn’t much awareness about AS. Most people haven’t hear of it. The majority of the Arthitis Research dollars goes toward RA, but a very small percentage toward AS .

    What is it like in other countries?

  4. I am so sorry you had to go through all of that. Your doctors seem shockingly apathetic! Is that typical of Canada’s healthcare system or did you just get a run of bad doctors? Hopefully you will get to try Humira soon. It has been amazing for me. I wish you all the best.

  5. welcome julia i hope you find what your looking for here and if i can answer any of your concerns feel free to ask

  6. Welcome to the group, Julia. You have a great many resources at your fingertips now on this site. Best wishes to you and your family.
    Stephania #445

  7. Dear Julia,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  8. Hello my AS friends, so the latest development for me is I was diagnosed with crohns colitis which I suppose is not completely unrelated to AS. I have had symptoms of it for years now. I don’t know why i kept putting it off until i just couldn’t take it anymore. I keep getting infection after infection so not well enough to go on Humira yet.
    Have any of you been on Humira? If so, has it helped you?

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