Beth Normile

My name is Beth Normile and I am 46 years old. In November of 2007 I was diagnosed with AS. I’ve been putting off telling my story for years now because I wanted to wait until I was feeling good. I wanted people to read this and see that you can get better but so far in my case that hasn’t happened yet. I’m not sure that it ever will. 

For years I had a lot of lower back pain but it varied in degrees and I thought it was caused by a herniated disk I had gotten as a result of a car accident. I was very active during this time so whenever my back “acted up” my doctor would give me a round of Prednisone along with some pain pills and send me for PT. 

In October of 2007 I decided to quit smoking. I believe that caused my immune system to go into overdrive because 2 weeks later I woke up crying out in the most severe pain I’d ever felt. All of my joints were red, swollen and throbbing. I had no idea what was happening but for some reason I feared it was RA. My best friend’s mom had gotten that in her teens and I had watched her suffer over the years. It was so severe that she ended up passing away when her organs started failing. 

Instead of going to the ER that morning I was able to see my doctor that day. My husband had to carry me into the office because of how bad the pain was. The doctor happened to have medical students there & he asked if they could stand in. Both they and the doctor agreed that it was RA but he still referred me to a rheumatologist. 

Over the next 3 weeks I went through any/every test I can think of. At the time it was a hassle but I was thankful because I could tell that the rheumatologist wanted to be thorough so as not to misdiagnose me. In the middle of November once all of the results were back I got my diagnosis. 

When he said I had Ankylosing Spondylitis I actually felt a sense of relief & even chuckled a bit because it had a crazy name I’d never heard of. At the time I thought as long as it wasn’t RA it couldn’t be that bad. (Clearly I was mistaken.) I was the first female patient he had with AS and the only information he had available were 2 pages he’d photocopied from a book. I remember the first sentence of this said that 97% of people affected with AS were men in their 20’s of  Scandinavian, Alaskan or Indian descent. I laughed because I was a 36 year old female with Irish, German & Russian blood. The rheumy chuckled too a bit and said perhaps I needed to sit down and have a talk with my parents. (I have to say that’s the last time I’ve probably laughed about having this disease.) 

Over the years I’ve gone through all the typical treatments including Celebrex, Mobic, Sulfasalazine, MXT, Remicade, Simponi and Humira. This past December I started Enbrel and as of now not much has changed. For some reason medication works initially then fizzles out after a few years. With the way things are going I worry at times because I feel that I’m running out of options as far as treatment goes. 

In 2009 I started experiencing even more pain and it felt different but I chalked it up to the AS. When it kept getting worse though I made an appointment with my rheumatologist and found out that I actually have Fibromyalgia too. 

I’d like to say that things have gotten better since first being diagnosed but as I’ve already stated they haven’t and I don’t know if they will. I try to stay positive and not lose hope but there are days I just want to cry and scream because of how much I hurt and how frustrating this all is. 

I am happy that I joined Facebook because I’ve met some wonderful people who have AS & other chronic pain conditions. I feel very blessed to have them in my life because it’s important that you have support when dealing with a disease. Friends and family can try and understand what it’s like but unless you have AS I don’t believe you truly “get it”. 

In closing I’d like to thank Cookie for starting this webpage. It has helped to bring more awareness to AS which is something I feel is vital.

Peace, Love & Gentle Hugs

Beth

Pennsylvania, United States of America

One Response to “Beth Normile”

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

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