A.S. Face 1937: Cecelia

Dear Ankylosing Spondylitis,

Since I can even remember you have made my life a living Hell. You have taken over my body in an invisible attack that no one can see but only I can feel. You have made me feel worthless, crazy, stupid, paranoid, sad, afraid, angry, and most of all you have made me feel pain. Pain that no one can possibly imagine unless they experience it for themselves. You began your attack when I was 8. You were so invisible that no one could figure out why I was in the pain that I was in. You made me miss out on having a normal healthy childhood. Instead, I was one of those kids who was always sickly and would walk funny because I hurt so bad. You were so secretive with your attack on my body that by the time I was diagnosed it was too late. The damage was already done.
My joints were already calcified and turned into bone. My body has become a prison I can never escape from. Because of you, I have lost hope of being able to achieve my dreams. Because of you, I look healthy on the outside but on the inside, you are wreaking havoc in my body. People look at me like I’m a faker. I have a fake service dog, I have a fake disabled placard just because I can walk and look healthy, but little do they know that you AS are attacking the crap out of me. I may look normal on the outside but if they were to see my X Rays they would cringe and they would understand. But they can’t and they won’t and that’s ok. Because the only ones that matter is my family and friends. Ankylosing Spondylitis, you make me miserable and I hate you.
On the other hand, you have also made me realize how precious life is and to appreciate it more. You have helped bring me closer to God in order to get through the hard times and to comfort my soul. Without you, I wouldn’t be who I am today. Sometimes I don’t know if that’s a good or bad thing. Mentally you have changed the way I think and feel about things. I don’t worry about the small things. I appreciate being able to do the simple things and enjoy life’s moments. Like the smell of fresh flowers blooming in the spring and smelling the aroma as I drive by while looking out at the beautiful water on a bright sunny day. I enjoy watching the butterflies landing on the freshly bloomed flowers that are full of vibrant colors. Each day I go out in pain and know that I am still alive and because of that I appreciate the pain. You have become a new normal in my life. You have interrupted my life in so many awful ways but you have also added value to it as well and for that I am grateful. Eventually, you will no longer be in my life as I will be free of you and when that time comes I will be rejoicing that I will no longer be your prisoner.

Sincerely,
Cecelia

I just realized something. 10 years ago around this time I was diagnosed with Ankylosing Spondylitis. Back then I had no idea what that diagnoses meant and I didn’t realize what exactly it meant for me.

All I knew is that it had been causing me pain since I was a kid and had caused me to be unable to walk at all at times, and when I was 10, it had caused me to miss so much school. I went from doctor to doctor starting at 7 or 8 because it had began with migraines. Imagine being that young having severe migraines that sent you to the ER every time! And from there having severe hip pain and limping all the time because it hurt so badly, and being made fun of because of the limp.

Every time my parents took me to the hospital and everytime the doctors said it was “growing pains”, “she will grow out of it”, and so on. So I lived with these migraines and the intense pain for years in my spine and hips without knowing why. Finally 10 years ago a doctor on Mountain Home AFB did a genetic test and found I was HLA-B27 positive. She said “after all these years I have a diagnoses for you”… “you have Ankylosing Spondylitis” little did I know how much it would change my life and effect me. Being so young i didn’t give it a second thought. I shrugged it off like i was diagnosed with a cold and continued my life.

As time went on, I was put on medication after medication to help treat my AS. But unfortunately it damaged my stomach so bad that I had to stop. I thought that it was supposed to get rid of my pain. I didn’t know it was only supposed to slow the progression of the disease. So i stopped taking them. Instead I began to get steroid injections into my SI Joints because being diagnosed so late had already caused so much damage that my right SI joint was already almost fused into bone.

Later, I made a decision to have a medical device unrelated to my AS and I still did not know a lot about my disease and that decision would really change the direction my AS was going. Unbeknownst to me the device made my progression speed up. It created even more damage made my left SI joint fuse into bone and caused so much more pain that it made my pain as a child seem like nothing.

I was put on a biologic medication (i.e. Humira, Enbrel, Simponi, and so on) to which i have to get through injecting myself. It lowers the immune system so that my body won’t attack itself so severely. Unfortunately, if I get sick even with just a cold it will take longer to get better or worse send me to the hospital, but for others it is only a nuisance.

Now, I have progressed to where I need to take pain medications like Oxycodone everyday just to take the edge off the pain but it never fully goes away. I need a service dog to help me and sometimes a walker. I need to park in handicapped spaces because it is painful to walk around a store and my the time I am done I am in more pain then I began with so I need to be as close to the store as possible. I have trouble with washing my own hair now because it creates too much pain in my back so I need someone to do it for me. These are some of the ways this illness has changed my life. Sometimes I wish that I would have gotten diagnosed earlier to prevent the damage that was already done. I wish that I had never gotten that medical device that sped up my progression and caused more damage, and sometimes I wish I never had this illness at all. But it has made me who I am today. It has made me enjoy things that most people take for granted, and it has made me not take things for granted, and it has only strengthened my faith in Jesus. So 10 years ago today I was diagnosed with an illness that changed my life forever.

Also, I am so glad for my parents because they never not believed me that I was in pain. They continued to take me to doctor’s even though no one could figure out what was wrong with me and they never made me feel like it was in my head. Many others have been told they were imagining it, or hypochondriacs, or seeking attention. And not once was I made to feel that way and it was what made me not to give up on getting my diagnoses.

Cecelia Kuhn

Thank you for helping me share my story! 💙

Florida, United States of America


One Response to “A.S. Face 1937: Cecelia”

  1. Dear Cecelia,
    Thank you so much for being a part of my vision.
    Sincerely Cookie

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