A.S. Face 0125: Carrie Matheson Bonin

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The first time I complained to my doctor about pain in the morning was around 16.  His response was “Most people wake up with some pain in the morning. It’s completely normal”.  For years I felt like a weak human as I watched people my own age thinking; how can most of these people wake up in this much pain and still be happy?  What was wrong with me?  Why wasn’t the suicide rate so much higher? Over the next five years this same doctor treated me for back pain, hip pain, knee pain and foot pain (all early signs of AS) with physical therapy, anti-inflammatory pills and cortisone shots. By 21, the pain in the morning was so severe my eyes would well up with tears before they were even open.  Some mornings I would get out of bed to find the lower half of my body not working – the result was usually an incredibly, ungraceful face plant.  Dressing myself in the morning was frustrating and unbelievably painful. Imagine trying to dress yourself without being able to move your spine or your hips.  Experiencing amazing amount of pain if you did manage to move them.  The constant day-to-day pain and the increasing difficulty walking brought me emotionally to an all time low.  I was 21 and waddled with the stiffness of a 90-year old woman. It was around this time that this same primary care doctor called to tell me that he had no answer as to why I was in pain, but he was going to stop all prescriptions and suggested I should see a psychiatrist to discuss the pain.  A psychiatrist! A psychiatrist! In disbelief, I slammed the phone on him and just sobbed. If my brain is causing this much pain the only reasonable explanation was that I must be COMPLETELY and UTTERLY INSANE.

For the next 4 years I carried my old x-rays from doctor to doctor looking for any answers. I continued going to physical therapy and pain management doctors with little to no improvement.  By 25, I was drowning in debt from medical bills and had given up on ever finding an answer for my pain.  I was so tired of hearing all the lame excuses a doctor gives when they have no idea what is happening.  They had me convinced that there simply wasn’t an answer, no one could help and maybe, just maybe I was crazy enough to have some how cause myself this pain.  Sleeping and walking were becoming a luxury or a privilege that I was no longer allowed to have. That year a family member happened to meet a well-respected orthopedic surgeon who agreed to do whatever he could to help.  The very first time I saw this doctor, he did ONE THING different from all the others; he took a new x-ray and immediately had my answer.  The surgeons exact words were “You have more arthritis than an eighty year old woman confined to a wheelchair but that is not the big problem.  There are major physical changes to the joints on both your hips and lower spine.” He said he “could surgically correct the problem but the same problem will reoccur.” The surgeon ordered some blood work to confirm but he was sure we had found our answer. After him, every single doctor who looked at the x-rays and the blood work agreed.   I had a ‘textbook case of Ankylosing Spondylitis’ except that was a young woman.  Then each doctors explained the same cold hard facts; there is no cure… no one really knows what causes it or how to stop the progression … it will eventually leave me crippled and deformed.   But they could treat the symptoms, which would make me a little more comfortable.   I was so relieved that at last I had an answer and devastated at the same time as each plan I had made for my future were flying out the windows one by one as doctors described what lay in wait for me.  Completely overwhelmed, but with the next statement I could almost hear my world shatter “at this rate you will be in a wheelchair by thirty”.

I was diagnosed in 1999 at the age of 25 and the years that follow mirror anyone else who suffers from Ankylosing Spondylitis.  Weeks, months and even years of debilitating flairs and inflammation in places you didn’t know could become inflamed.  Dealing with the never-ending flow of new and often-scary disorders that accompany AS.  I find myself using x-rays, c-scans, and MRI reports as a ‘score card’ of sorts, measuring how effective I have been in my fight.   I have read everything I can get my hands on, tried almost every form of alternative medicine and spend every waking moment fighting the pain and progression of AS.  I did manage for quite some time to live with the outside appearance of a normal life but over the years my fight has had numerous setbacks and small defeats.  Now, I do not fight with any false assumption of winning the war but rather I fight to ‘hold the line’.  With the constant help and care of a great doctor I am still able to fight without a wheelchair.  With the love, support, patience and humor of wonderful friends and family, I get through each battle one day at a time.   Over the years I have had to recreate my goals, my dreams, and even my career to reflect a new meaning of ‘quality of life’.

I am not writing this in search of pity, I do not want or need it.  As a matter of fact, when I am struggling to move with as much normality as possible, your pity is a blatant reminder that I am failing.  I am however writing this because I would like the words “Ankylosing Spondylitis” to not provoke a completely clueless and bewildered look on everyone’s face.  I would like people to understand that if you can’t see my disease by looking at me it is only because I have been fighting very hard every day to keep it that way, but I am slowly losing.  So your looks of skepticism or lack of understanding is incredibly frustrating.

I am putting my face on this wall to remind all the under educated, narrow-minded doctors that YES women under 25 years old, who have never had children can have Ankylosing Spondylitis.

Most of all I am voicing my story because I rely on the wonderful online communities of AS sufferers.   Their help, encouragement, and support has given me courage and strength when I need it the most. They understand in a way that no one else can because they live it and because I do not want to lose another friend to this disease without you knowing about all of them.  If life is going to get better for any of us, we are all going to have to yell together.  So I will follow the brave people before me, come out of the shadows, and stand tall in the hopes that the next generation might get a diagnoses quicker, have better treatment and maybe even a cure.

My name is Carrie Bonin

Connecticut, United States of America

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19 Responses to “A.S. Face 0125: Carrie Matheson Bonin”

  1. Awesome, thanks for sharing! God Bless!

  2. Kudos,Carrie. Fight hard and keep going.I,too,was told I would be in a wheelchair and am not,as of right now.You are a survivor….gentle hugs<3

  3. Dear Carrie,
    Thank you so much for sharing your story with us. I appreciate all the wonderful feedback you have given. Your strength and courage is and will be inspiring for others.
    Sincerely Cookie

  4. I am so proud of my sister! You are the definition of grace under fire (… or inflammation). I have learned so much from you and how you approach each and every obstacle in life. You are a blessing to your family and all who know you.

  5. Carrie, like SO many others, until I met you, I had no idea that this disease existed. Now I see it in you day by day. You are a true fighter! I hope to learn more and more from you, and hopefully be able to help spread the word… I will be there with whatever I can do for you, if only to keep the smile on your face. Love you!!!

  6. WoW! Thanks for sharing Carrie! I am going to write my story tomorrow and try to get it up. I would like to borrow some of the lines in your post to say to friends and family. Thank you for being so bold.

    -Krista

    Krista Pavatt said this on November 19, 2011 at 8:29 am

  7. Can’t way to read it !
    Thank you

    Carrie Matheson Bonin said this on November 27, 2011 at 3:43 pm

  8. Remember that line in an old song “You took the words right outta my mouth”?? I was smiling as I read your story, especially the part about I only look like this because I’ve been fighting every day to look this good. But you’re right, it is eventually a battle lost. Keep the faith that our yelling will make a difference!!! Well said!

    Lisa Lee said this on January 21, 2012 at 4:45 pm

  9. Wow Carrie, in all these years that I’ve known you I had no idea that you were going through this. Scary indeed, unknown territory every day. You definitely have the love and support of your family and friends and as your brother put it, you show grace under fire- that is the Carrie that I know. You wouldn’t have gotten this far without your biggest supporter, though no longer earthside, standing beside you. On the lowest days she, and all those here with you, will pull you through to brighter days. Thank you for sharing Carrie 🙂

  10. Carrie – You are such an inspiration to us all and always have been. I know your Mom is right there beside you every step of the way and giving you strength and support in her quiet way. Your smile lit up the room when I saw you at Christmas just as it always has ..,keep smiling, hugs – OXOX MB

  11. Just read your testimonial- rob shared it with me. I look forward to meeting you on Saturday!

  12. Thank you for sharing Carrie! You have fought a hard fight, I hope when i’ve had AS for as long as you have had, I still have such a positive spirit. Lindsay Face 399

  13. Carrie, thanks for your story. I am a 60 year old man who has spent most of my adult life working in healthcare. I first developed symptoms when I was 18, in boot camp in the navy. I was labeled as a shirker by a doctor who thought I was trying to get out of doing work. I was finally told by a radiologist friend that I had signs of AS in my SI joints when I was 36. I told every doctor who treated me since then and was ignored until March of this year after I had turned 60 and was finally referred to a rheumatologist. I told her about the radiologist almost 30 years ago and she looked at me funny then ordered a battery of x-rays. She called me back to show me the x-rays and pointed out my horrible SI joints, seven fused thoracic vertebra and a monster bone spur in my right shoulder. Guess I wasn’t crazy after all.
    I felt every word of your story. Keep fighting and keep smiling. You’re an inspiration to a lot of people who feel like giving up.

  14. Great, inspirational addition to the Faces project, Carrie. You have the right attitude to fight this disease. Since modern medicine hasn’t found a cure and funding isn’t adequate for research, the best alternative treatment is relying on the support of us, adapting to your body as it changes, and maintaining that steadfast perseverance.

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