Kevin Andrews

A life of Ankylosing Spondylitis

I am Kevin I am 57 years old and I live in England my problems started about 50 years ago at a time when even less was known about this Disease and if you had pains they where growing pains or imagination.

Treatment was nothing or pain killers. It took 23 years to get a diagnoses. Exact words from Rheumatologist who gave me diagnosis.

(You have Ankylosing Spondylitis it is a rare disease there is no cure and you will end up in a wheel chair goodbye see you in 6 months).

Well here I am 27 years later bent with severe Kyphosis fully fused spine,constant Iritis, breathing restricted by fused ribs, Chronic Obstructive Pulmery Disease. Insulin dependant Diabetes, IBS and Carpel tunnel syndrome.(But yay no wheel chair)

As you can see from my photos I am a classic case of Ankylosing Spondylitis. Its not a pretty site I know but this is me. I cant change the way I look I used to try and hide it avoid mirrors and shop windows and refuse to have my photo taken but recently realised what’s the point every one else can see me. Hiding from myself is not changing the way I look to other people and is just making me miserable. If I  didn’t have Ankylosing Spondylitis I would not be me as I am now my whole life would have been different. I wouldn’t have my wonderful Daughters and Grandchildren I wouldn’t have met Joanne my very supportive wife. And I wouldn’t have met all the wonderfull friends I have who like me have Ankylosing Spondylitis.

So although AS is a very restrictive painfull disfiguring Disease remember you wouldn’t be the wonderfull people you are without it.

My aim is to make as many members of the public aware and under stand what we go through in our every day lives how we are not different from them we all bleed the same we all love the same just because some of us are bent over or fused bolt upright we are still human. If they want to stare I  will stare back if they want to know more then ask we don’t bite. I have only known one person to stop and ask what I had wrong with me in all my years with AS. Talking is what spreads the word and makes people aware of us and our lives.

Hiding from our selves and our fears does not help us or make others aware. Always remember people with AS are strong in mind if not in body we have to be tough to survive in this world with all our problems always think positive enjoy your life as best you can even with your restrictions you only get one shot at it and most of all remember what we do for recognition of Ankylosing Spondylitis today and in our life time will make all the difference to the new generations of sufferers.

Ok it’s been 21 months since Cookie was inspired to start faces and I am 58 now and feeling 98 but proud to have been a part of this. And proud of the way it has grown I know Cookie felt at times it was never going to get to the 1000 members but we are almost there now so I think it is time for me to do an update on what life has been like for me in this time. I have had ups and downs like we all have some worse than others I have had good times and bad times pain free times and very painful times.

Since my original post I have separated with my wife and I am on my own again she has moved back up to Yorkshire to be near her children. This I understand living with a person with severe AS is not an easy thing to do we’re still friends and we talk most days on face book. I have now moved into a disabled person’s bungalow and have two dogs, fish, and two Geckos for company they keep me occupied and a reason to get up every morning. Now health wise well my Ankylosing spondylitis has continued to progress in the usual way my kyphosis is more severe now and I only have slight movement left in my neck all my vertebra are fully fused from my tail bone to my skull apart from one in my neck which is fusing slowly and it will only be a matter of time before its solid. I have Neuropathy affecting my feet and hands and ostio arthritis is now showing on my x-rays in my hips and feet and hands. I have bone spurs in my shoulders and heels and suffer with planter fasciitis in both feet. I was taking Enbrel the biologic drug but had a reaction with it that caused me to have constant Iritis which caused me to develop fast acting cataracts which I had removed last year. I do still get pain in my iliac joints and spine but only if I overdo it most of my pain now days is in my other joints shoulders , elbows , hands ,knees, hips, feet  and of course Neck . The only drugs I take for my AS are Co-codamol 30/500 4xaday and I’m taking Amitriptyline for my Neuropathy. The Neuropathy is also caused by my Diabetes which I’m still struggling to get under control troll up and down like a yo yo not good I’m taking more insulin now a fast acting injection before meals that helps but still needs to be better. My IBS is about the same good days bad days and very bad days but hey what can you do just carry on as best I can. C.O.P.D got very bad for a while was wheezing and having trouble breathing day and night it could be Fibroses as I get pain across the top of my chest which hurts when I cough. I have a new turbo inhaler which is great the best I’ve ever had really helps. Had an Angiogram done to check my Heart no blockages thankfully I do have thickening of the walls and my heart beat is a bit weak. The Rheumy told me recently my heart is on the large size which is a part of AS and Diabetes so double whammy there do I get extra points. My Depression and my fatigue are not good feel tired and life less a lot of the time from the fatigue I try and keep busy that helps on the day but next day I’m even more tired and weary. My Depression is in a bad place a few months back I got very low and demoralised as some of you probably noticed I wiped my friendship group from faces removed myself from all my groups and just went into shut down mode for several weeks I’m still not in a good place up and down was taken of the antidepressants I was taking because of being put on the Amitriptyline which is an antidepressant I am only taking a low dose because it has bad side effects but think I’m going to have to increase the dose soon or be put on another drug I’m getting every emotional and down . The years of AS and all my other problems are really getting to me now and it’s a fight to stop from going even lower. My Rheumatologist has now told me there is nothing can be done for me except monitor me and help with the pain if I need it so I will just continue to see him every six months and I can ring him direct if I’m having issues I am worried about. I’m sorry this update is not better and more cheerful but thought it was time to do it. And hey I’m still not using a wheel chair lol.

 

Please feel free to check out my site: A.S.R.A.United Ankylosing Spondylitis Rheumatoid Arthritis  United

Sussex, United Kingdom


8 Responses to “Kevin Andrews”

  1. Dear Kevin,

    I wanted to thank you so much for having the courage to post your pictures on line for all of us to see. I’ve been blessed to witness so many amazing people in our A.S. community doing phenomenal projects to raise awareness for Ankylosing Spondylitis. I’ve helped with many projects in little ways. I have wanted to do something that would result in a positive way in raising awareness on this disease. One of the things I have struggled with the most is the what if’s? What if I had been diagnosed earlier? What if the doctor would of told me I would fuse and couldn’t bend anymore or turn my neck? What if someone would of told me about what may or could happen?
    Would my life have been different. Maybe. Maybe not. But I will never know. I am a firm believer on reality and truth, especially when your life or quality of life depends on it. Thank you for giving me the vision to do something I have wanted to do for so long. Thank you for allowing me to see courage at it’s best. Sincerely, Cookie

  2. Dear Kevin,

    Thank you for sharing your story with us. It is a sad thing to have this horrible disease but I am glad good things came out of it for you as well. I have had bad experience with people and doctors as well. Many have no compassion and regards to others feelings. I used to be ashamed of what I have become because of this disease, with all the friends I thought would always stay friends have left, became unemployed, all the things I worked hard for years are gone in an instant, my home taken away, my social life gone, my dreams and aspirations are down the drain and so on… Reading your story made me realize more that it doesn’t matter what other say, whether they stare, point or give you the look. What matters is that we are alive, fighting and doing our best to move on and live our lives as happy as we can.

    Regards, Jimmy

  3. Thanks for sharing Keven…inspirational!!

  4. Thank you for your story Kevin. Your message is very inspirational. I was feeling pretty sad and in pain today and you made my spirit feel better 🙂

  5. This is my Dad. He is amazing, I wouldnt change him for anything. To me he is perfect. xxx

    • Dear Christine,
      I think he is amazing too. He is one courageous man and inspiring so many people to take charge of their lives and make a difference. I am honored to call him my friend and humbled he calls me his.

      Sincerely Cookie

  6. hi!
    i got diagnosed few days back (1 Feb 2012) and it has been great help to have read your post.
    my doc has not mentioned wheel chair. has said that medication will help. but there is yet no cure. so much for progress. some day we will have cure too.
    May flowers bloom

    keyur joshi

  7. Kevin; I just came across your story and to be completely honest, I had never heard of this disease. As a former health and fitness professional, I had heard of the term “spondylitis”, but I had no idea about this devastating disease. Thank you for continuing to share your story. I can hardly fathom how difficult life must be for you now…and has been for many, many years. You are a warrior my friend and I appreciate and commend you for all you have done to create awareness about this cruel and painful disease. Please know that you matter and that even though we have never met, I am happy to have at least known your story. Keep up the good fight…for if it’s not for you or any other person…then for your dogs and fish as they love you unconditionally! 🙂

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