A.S. Face 0495: Carol

I have been reading about the many “Faces of AS” and have been touched by each person.
It has been a difficult decision to add my story, mainly because it has made it more real and I keep hoping I’ll get a call from my Dr. saying a mistake has been made and that I don’t have AS. But, at the same time, I’m glad to finally know what is/has been wrong with me all these years.
My symptoms started with iritis when I was 17 and it then came the sciatic issues. I was sent to different doctors and each gave their own diagnosis- they said I had a scratch on my eye and gave me medicine for that issue, then I was told my sciatic issue was from sitting too much and was told to exercise more and to not sit too long at a time.
Then I was 22 and had jaw issues which the chiropractor said was just out of place. Then came more sciatic issues and more iritis.. I by then had given birth to my first son and so all the other pain in my back was due “to child birth”, so I was told. By my early to mid 20’s, I had developed a high tolerance for pain!! Living with pain became as natural as breathing. Then the iritis would flare and I would be back at the ophthalmologists getting the usual medicines and even shots of steroid in my eye!! I went on to have my 2nd son and spent the next 3 years going to physical therapy, while working, taking care of 2 children and trying to explain to everyone that something was wrong and kept hearing the same old “you just need to work out and build up your muscles.”
I actually was quite the athlete and had plenty of muscle!! I love sports, as well as, physical activity and was never overweight or inactive. Even when the pain was so bad that I wanted to die, I kept going physically unless I was completely bed ridden, which would happen time to time. I eventually had my 3rd child, a daughter, and once again by the time she was 2 weeks old, I was bed ridden, had to stay with my parents and a friend took care of my 3 children. My daughter was 6 months old before she stayed 2 whole weeks with us. Someone would drive me to physical therapy 3 times a week- I saw chiropractors, neurologist, orthopedics and then once again iritis would start showing it’s ugly self!! I really didn’t want to exist, didn’t want to be a burden or be in any more excruciating pain. My daughter was now beginning her terrible 2s and I could still barely walk.
Luckily, a chiropractor did help me and I was able to start walking and eventually slight jogging. And, I finally could sneeze. One story I read on this site that had me crying, was a guy that played football and talked about how people didn’t see the tears every time he felt a sneeze coming on!! I have severe allergies and for 3 years the pain, from taking in a deep breath, in my back would stop me from sneezing!! I would have to brace myself against a wall hold and hold on just in case I fell from the pain. I’m sure like most people with AS, writing this doesn’t even start to paint the picture or tell the agonizing history/future of what AS is like. It was only after receiving cortisone injections in my back, having a pain management Dr. tell me that he had 2×4 boards more limber then me and mentioning some cervical spinal fusion after he had ordered xrays, that I got my answer.
In January of 2012, I went on WebMd’s website and miraculously found this, unheard of, condition “Ankylosing Spondylitis”. Then, I set up an appointment with a Rheumatologist, who confirmed that I was hla-b27 disease positive and had spinal fusion. So, 22 years after my first symptom I am finally diagnosed. I have severe hip/back pain, lumbar( all but L5), cervical and thoracic fusion, spinal deterioration, both knees are affected, shoulder issues, slight eye damage, extreme fatigue, 1 wrist, couple of fingers- toes affected and what doesn’t hurt daily doesn’t matter.
This is just some physical pain-  It’s the anger, resentment, depression.. the loss of time, patience, energy, immobility, not holding, not carrying in my arms and other feelings of being there for and with my children that are truly the worst affects of this disease. I wish, just for one day, to feel like I did when I was 16 but I know it will not ever happen- but my worst fear is that this could happen to any one of my children. I am currently on Methotrexate, Remicade infusions and a few other things- I play tennis, do my stretches and believe in tomorrow- no big changes yet, but I am hopeful! But, mostly I am hopeful that there will be a cure, not so much for me, but for those that have it worse then I do and for possibilities of my children and your children.
My name is Carol and I am a face of AS.
Enjoy today, tomorrow may be too painful…
Texas United States of America

11 Responses to “A.S. Face 0495: Carol”

  1. Welcome Carol, we all need to stick together and we can all thank Cookie for that!!! Lets kick AS into touch!!!

  2. Welcome to the group, Carol! You will find a lot of support here!
    Stephania

  3. I can totally relate to all the other symptoms besides pain. “Hope” is sometimes all we have left… And sometimes even that gets lost for short periods of time…
    Hang in there, keep moving…
    Thanks for sharing.. Your story helped me today 🙂

  4. Beautifully written Carol. They say a writer has to suffer for his craft. I think that only AS’ers can write in such a way as to truly see into our souls. They capture it. They illuminate it. How we feel is there for all to see. We can see with clarity what AS took away from us. My HOPE is that we, all together, from here on out, can find things, good warm things, to put back, replace and fill the void AS has left in our spirits. Acceptance may be the first step-and a diagnosis and finding our brethren is a first step towards that. I don’t have the answers, but I know I’m ready for peace of mind. I think FACE’s is helping us all to find those answers. Thanks for helping me Carol.

  5. Love you Carol. I’m really proud of you for being so open and for finding a support network such as this site. The best way to fight an enemy is to acknowledge it and face it head on. Your family loves you and will fight with you! XOXO PELIN

  6. Welcome to the group, Carol.

  7. Your story is just like mine. You look great.

  8. Thank you for sharing your story. My story is much like yours. I got my diagnosis after 30+ years. I believe if we all work for recognition of this disease, not only will more funding go towards research on this disease, more women will not suffer for an extended time without diagnosis and treatment.

  9. Dear Carol,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  10. Hi Carol, Once again, my story is your story, yours mine. Oh I miss my sports, running, my task at hand these days is to not burst out in tears every time I hear one of my running songs played. Great that you can still hold your tennis racquett, I can barely hold a fork. All the best girl! Suzanne

  11. Hi Carol, Thank you for sharing your beautifully written story. I saw your photo and thought, “wow, she is doing really well.” You’ve driven home the point how insidious and invisible the disease is to people that don’t have AS. By looking at me, I don’t think anyone would suspect my pain and fusing going on inside my body. There is so much work to be done to get people diagnosed quicker. Kindest regards, Rich

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