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 were growing pains or imagination.
Treatment was nothing or pain killers. It took 23 years to get a diagnoses. Exact words from the Rheumatologist who gave me my diagnosis:
“You have Ankylosing Spondylitis. It is a rare disease, there is no cure, and you will end up in a wheelchair. 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 wheelchair.)
As you can see from my photos, I am a classic case of Ankylosing Spondylitis. It’s not a pretty sight I know, but this is me. I can’t 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 wonderful friends I have who, like me, have Ankylosing Spondylitis.
So — although AS is sometimes a very restrictive, painful, disfiguring Disease — remember: you wouldn’t be the wonderful people you are without it.
My aim is to make as many members of the public aware and understand what we go through in our everyday 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 ourselves and our fears does not help us or make others aware. Always remember people with AS are strong in mind, if not always 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 lifetime will make all the difference to new generations of sufferers.
Ok it’s been 21 months since Cookie was inspired to start Faces of AS. 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 1,000 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 Facebook. 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 giver me a reason to get up every morning.
Now health wise — well, my Ankylosing spondylitis has continued to progress. 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. I have Neuropathy affecting my feet and hands, and ostioarthritis is now showing on my x-rays in my hips, 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. 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 heartbeat 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 lifeless 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 demoralized, as some of you probably noticed. I removed myself from all my online groups, and just went into shutdown mode for several weeks. I’m still not in a good place, up and down, was taken off 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 more to 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 wheelchair, lol.
A Note from the creator of Faces of AS, Cookie Hopper
“It was important for me to do this, not for myself, but for each one of the Faces on this site and those who are still unknown. I wanted to show the reality of this disease and the courage it takes to live our lives. I wanted to honor those who have Ankylosing Spondylitis, who I admire and respect.”
Creator of Faces of AS, SAA Member, and Face 0062
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