A.S. Face 0485: Katie Allen

 At 27 I was diagnosed with Ankylosing Spondylitis. This happened the same time I ended up with a life-threatening fistula due to Crohn’s Disease.

I was in horrible pain for months and my first doctor said I couldn’t have AS because I was a woman. This was 1996-97 before there was so much information available on the web, but I found enough to diagnose myself based on my symptoms.  For many years I struggled with different medications and found Remicaid worked the best. Unfortunately along the way I decided to open my own business and couldn’t afford it anymore, but I was running myself ragged with a restaurant (note to self, don’t do that again!).

Now at 42, I’m finally in remission. I am able to exercise with yoga and even zumba. I have minimal pain periodically, but for the first time in a decade, I can usually remove it with meditation, stretching, rest and Reiki (instead of Oxycontin). One of the worst things of living with this disease is that the pain is hard to describe to someone who has never felt the debilitating effects of this disease. I have been through months at a time where I couldn’t walk without a cane.

I have some fusion in my lower spine, so I’m constantly trying to straighten up. I know when I’ve pushed myself too hard when I walk by a mirror or window and see myself stooped over. And then it’s time to stop.I believe strongly in doing whatever you need to do to find relief. I also think it’s so important to keep moving, even when it hurts. Just a little walk up and down the hall in your house if that’s all you can manage.

You also need to learn to give yourself a break and ask for help or just give yourself permission to rest and heal. I always felt so guilty when I couldn’t do an activity or event because of the pain. I now am okay with saying I’m having a bad day and am not up to it. One of my greatest wishes is for a cure to be found so no one has to go through what I’ve been through with this. I’m not naïve, I know it can come back with a fury any time, but for now I’m doing what I can to be as healthy as possible. I wish all of my fellow AS’ers a good day, as often as possible. And most of all, know that you aren’t alone.

Katie Allen

Sundance Wyoming United States of America

5 Responses to “A.S. Face 0485: Katie Allen”

  1. Dear Katie,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. I know that place!! I was there two months ago. I’m from Rapid City, SD. I have to ask-do you see Englebrecht or Weaver? (you don’t HAVE to answer). You see folks, out here in the Wild West, we have to ride up to 200 miles to see the nearest Rhuemy. It’s usually like “one end of the state or the other.” It’s aboout time we had more “Westerners”, there’s only like “two pins” in the map of Wyoming and South Dakota. And from the looks of Englebrechts waiting room, there must be hundreds of us. Thanks for sharing Katie, It’s nice to see AS’ers who are healing.

  3. I really related to your last paragraph. .Beautifully written!

  4. Thanks for the responses!! Derek, I was supposed to see Weaver and then ended up in the hospital having a huge ovarian cyst removed and 9 days later my left kidney. Needless to say, that appointment never happened. I had bad nerve pain from the kidney surgery for a long time and finally got better after a nerve ablation. I still have pains…but not like before. I swear it was during that time that my AS quieted down. So I haven’t been in to see anyone. I had a bout with my Crohn’s and see the docs over there in Rapid, but everything (knock on wood) is quiet for a change. I’m a transplant from CT and have had to find all new doctors – not easy. My rheum in CT was AWESOME = she is the one who saw me after the first doc and said, “I don’t give a sh*t what the bloodwork says – you have Ankylosing Spondylitis” – wow, what an amazing doc she is and I miss her.

    Nice to meet you and Daryl, thanks for writing and thank you Cookie for bringing us together!

    • Hi Katie. My “rhuemy”, and the “Rhuemy” to many of my “rummy” freinds is Dr. Englebrecht. He is a wise old sage. He told me awhile back that when he started (30 years ago as a hip young rhuemy with sideburns) it wasn’t a matter of IF but WHEN AS’ers fused up. He’s a big fan of the Enbrels of the world.

      If you just moved here from CT (Conniticut??), send me an email and I’ll tell you some cool places to go in the Black Hills. I grew up here. It’s my home. It’s survey@rushmore.com.

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