A Daughter's Story
I have lived with AS all my life. I know that seems kind of strange. My mom was diagnosed just after I was born. She is quite a remarkable lady. She's not one to let AS keep her down for long. She was a AS kicker going back a long way.
Her AS seems to be somewhat different from the kind I have read about in your stories. Her fusions started from the top down. Today, all but one of the first 12 vertebrae have fused. She is not giving up that last bit of movement without a fight.
One thing I remember about Mom was her morning ritual. Exercises every morning (and night) have kept her mobile. She couldn't get her day started without cracking her neck in the shower. Some mornings it was so loud that I could hear it over the sounds of the radio in my room far from the shower. She was forever having her meds changed (or at least it seemed that way) and suffered (suffers) the consequences of those mega doses of whatever.
My mom has this bright and sunny attitude and disposition. Nothing is going to stop her. Mom decided to try golf again. She was forced to give it up due to the AS. The doctor warned her that she really shouldn't be playing golf, and then stated "but you are going to do it anyway, right?" Right he was. She is careful about it. And she has been golfing weekly ever since. Its close to 20 years since she picked it up again. And at least she doesn't have a problem in keeping her head down!
Since golf was a big success she decided to go back to bowling. You can find her every Thursday afternoon with the girls down at the bowling alley. Some of her friends have given up the sport due to age and health concerns. Not my mom! She did have to give up swimming a long time ago. Not really a good idea when you can't turn you head out of the water.
She has long since given up her daily exercise routine and may soon surrender her drivers licence when the last vertebrae fusses as she can not turn her head to see traffic coming on the left or right sides.
Mom is now 71 years of age (hey mom, its the internet. No one is going to know its you!). I have been diagnosed as having AS too but am lucky enough that the symptoms do not bother me on a regular basis and have not required a daily regime of treatment. Her flare ups still happen but not a frequently as in the past.
I just want everyone, and especially those newly diagnosed, to know that AS will effect everyone differently. Some will be affected to a great degree, and some to a lesser degree. I feel that the most important thing that I have learned after 'living' with AS for 40 years is that ATTITUDE is EVERYTHING. Listen to everyone, read everything and then do what YOU feel is best for YOU. Don't let this get you down. And do your exercises. I can't stress this enough. I always figured that Mom would be in a wheelchair in her 50's. Boy was I wrong (thank God). AS might stop you from having a life the way you pictured it but it doesn't necessarily have to stop you from having a wonderful life. Its very rare to find someone who's life turned out the way they planned it.
And don't worry about us kids. We will do just fine. Just keep us informed of what's happening. Don't let us find nitro glycerine tablets in the fridge. It freaks us out. ( I still remember that one). We also get freaked out over hospital stays we are not informed of until the last minute. Try to be informative and up beat and we try to be upbeat too. AS affects us too.
I love you Mom. I am so very proud you the way you have handled everything life has thrown you and I feel you can be a real inspiration to others. You have been to me.