A.S. Face 0627: Jim Williams

Hi everyone,

My name is Jim and was diagnosed with AS in October of 2009.  At the time I had to be wheeled into the rheumatologist in a wheel chair due to the pain.  Without much hesitation and after about an hour with the doc, she gave me the bad news.  She confirmed it at the next appointment at which time she told me that it was pretty well advanced and that I had probably had AS for at least ten years.  My great grandmother has RA but no one else in my family does so this came as quite a shock. The news was depressing but at least I knew what was going on.

The reason I went to the rheumatologist in the first place was because I was out trying to walk my dog and I had a fairly new neighbor who saw me and came out to greet me on the street.  After introducing herself again she asked me what was wrong with me.  I explained to her about my back problems and she looked at me and told me no that wasn’t it. I kinda laughed and said okay what is it then.  Her response was “you have rheumatoid arthritis” again I laughed and said no way it was just my chronic pain. She gave me the name of her doctor and said to make an appointment if I didn’t believe her.

After I was diagnosed, I asked her how she knew?  Her response was ” because I have it I can tell by the look on other peoples faces that they have it” I don’t know if it was a fluke of if that’s actually possible but I’m glad (I think) that she told me and also shared the name of her doctor who has been absolutely wonderful to work with and be treated by.

I recently had to retire at age 54 because of the pain. I had been the fire chief of a small department in a college town. Despite my every attempt to keep working, I had no life. I would go to work and come home and rest till I feel asleep.  On the weekends I spent trying to catch up in order to go back to work. Since retiring which was about six weeks ago I have begun to feel better and have started to exercise.

In addition to the AS, I have had three back fusions and am now fused from L2 down to S1. I have had chronic back pain since my first surgery and also have had a spinal chord stimulator and a pain pump installed as a result. I also have a lot of osteoarthritis in my back from all of the surgeries. I have also had both hips replaced due to my back surgeries, and probably now knowing what I do the AS, and now I am having to have my knee looked at due to increased pain and it locking up. Will probably require some  type of surgery to fix.

The doctors probably missed the AS in the early stages because of all my back problems and because all the doctors are so specialized that when you tell the you hurt in one particular place, that’s all they look at.  No single doctor is looking at the big picture which is why I believe that it took so long to be diagnosed. During this time while suffering there were many times I wanted to just give up, pack it in and end the pain.  I have always tried to maintain a positive attitude but with this disease its very hard. Probably the two things that kept me from doing anything drastic were my kids and hope.  Hope that someday they will find a cause and a way to end the pain and suffering that we all go through.

Thank you for all you are doing to spread the word about this awful disease and the ability to come to a page and read about other people who are going through the same thing and to read their stories. Because unless you have this, you don’t understand the amount of pain and suffering there is with it.  Our spouses come close but I don’t think they understand what its like to have it but they know how much it affects lives.

Jim Williams

Ohio United States of America


10 Responses to “A.S. Face 0627: Jim Williams”

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

    • Cookie,

      I have been thinking about an idea for sometime and I thought I would run it by you and get your thoughts. My idea is this; either now or when you reach one thousand faces, I would like to put together a AS reunion for all of the faces and combine it with educational topics to better inform all of us. My thought was to approach the AS association to cosponsor it and see if we could get some of the drug manufacturers to subsidize the cost. Let me know what you think about my idea.

      Jim Williams

  2. Cookie,

    Again thank you for giving us a place to tell our story and to read what others are going through and how they deal with it. It helps to know your not alone. Not having a very good week as I got pneumonia after my last Remicaide treatment. It seems like every time I get a treatment I end up sick. It get old so coming here to read helps to know I am not alone.

    You have created something special for those of us with AS. Thanks again.

    Jim

  3. It must be a “huge load off your shoulders” now that you don’t have to drag AS to work with you. Stress, even if it’s mental and not physical, seems to get mine going. This is a good thing Jim. I gots a feeling that you’re gonna
    find something very rewarding to do. Just listen to God’s whispers. But most importantly, just heal for awhile. Find a subject you’ve always been interested in, and learn all you can about it. Turn the negative of AS into a positive!…that’s the best revenge on AS I can think of.

  4. Derek,

    Thanks for your comments. Your right it has been a huge weight lifted by retiring. And my plan is to heal for a while before working again and I will only work part time on my terms. 33, almost 34 years working full time and being on call 24/7 takes its toll plus all of the other health issues. I did it for 17 years in pain and the last three were definitely the hardest.

    But that the past and its time to move forward. I have started my revenge by losing 15 pounds and exercising. With all the steroids I gained about 45 pounds so I need to get that back off.

    It’s still hard to be positive all the time but I am doing much better since I retired. I have not had a flare up since retiring so I know the stress definitely was affecting the AS.

    Thanks again for the positive comments.

    Jim

  5. Jim, it’s crazy isn’t it. I was at a shop once and as I was leaving the clerk opened the door for me, I believe I was using a cane that day, two elderly women walked in and asked me what was wrong with me, did I just have surgery, yes, people are funny, anyway I just smiled, mumbled i was fine and walked on. The clerk continued to follow me to my car, she said that I had handled that well and that there was no way I would have been able to make them understand what I had. We had had no discussion about my AS. I looked at her and said that I had AS, she said “I know you do”. She was a retired nurse. Another time was a nurse tending my son when hospitalized, she looked at me and said “I have AS too”. She was the first other person I had met with this disease, we hugged and cried. That is why this site is so great. All the best to you.

    • Suzanne,

      I don’t know if I could ever pick out somebody that I don’t know and determine if they have AS! The funny thing about it was at the time I really wasn’t having pain from the AS, it was all in my back. But maybe I’m still a little bit in denial or I am to focused on myself to be able to pick up on it.

      It has been an interesting journey and not the route I expected to take. I am in the beginning stage of a flare up and each one of those has started differently. Not that the pain or swelling is different but the locations that I first notice the flare up. This one, started in my feet and when I got up this morning I could hardly walk. It is also in my mid back which is unusual as well.

      I guess there isn’t much that is predictable with AS! I hope that you are doing well and thanks for letting me know that my neighbor isn’t psychic and that there are truly some people. Out there that can pick up on the disease just by looking at you.

      This page has been a great source of inspiration for me since I have yet to meet anyone close to me that has AS. My neighbor has rheumatoid arthritis so she understands somewhat but we don’t talk all that often.

      Thanks for sharing your experience with me.

      Jim

      • Jim.. grrat story and i think your reunion idea is awesome. I too am from the brotherhood. Retired deputy from a aggressive dept. Here in Pennsylvania. Now a emergency dispatcher. Love to meet you and many other AS friends.

  6. Hi Jim,

    Cookie is near 1000 Faces! Have you been in contact with Cookie recently regarding a reunion?
    I’ve been reviewing some of the Faces, and have gone back to read my story and see how vague mine was compared to some of the “authors” out there, and wished I could do some editing and rewriting of mine. I did leave a quite a bit out, S it was painful to write and took me a year to get what I did get out, on paper.

    Anyhow, please let me know if you are already involved ….I’d love to be a part of “special events planning committee”, and so would another Face Carrie Bonin.

    Please let me know,
    Thanks Jim!

    Candyce
    Faces of AS #700
    candyce.sindelir@gmail.com

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