A.S. Face 1030: Catherine Friend Tidman
I was born with Scoliosis.I got it from my mom. My dad also wore a huge back brace;he had AS.The brace was his only” treatment”,along with a liniment called Musterole…..that stuff smelled bad!Yet he went to work every day until age 65,as did my mom,who also had RA.The deck was stacked against me,for sure!
I had the usual “growing” pains,according to my mom. That is what she called everything I went to her with and I went to her frequently.My back ached,my legs ached,my neck ached.I was also quite the tomboy and she blamed my complaints on “not acting like a lady”.Finally,she took me to a doctor and had XRAYS done on my back.The doctor said I didn’t need surgical correction for the Scoliosis,just exercises,which I did do.Otherwise,he said I was fine and he related my other pains to the Scoliosis.We accepted that.as it made sense.
Years went by and now I am a young mother.Bending over the bed to change diapers was excruciating but,with a curved spine,what could I expect? Carrying babies,picking up toys,cleaning,doing laundry,etc. all contributed to my feeling that something else was wrong,but what could it be? I was already “diagnosed”,right?
Many times over the years my back would go out and I would make a trip to the Chiropractor. Irregardless of what we are told now,these doctors saved my life for years and years.Because I have Scoliosis,my back went out of alignment all the time and going to the Chiropractor enabled me to stand up and get out of bed, so I could go to work and raise my family.At that time,I was a single mom with 4 little children to take care of,so I couldn’t afford to be bedridden.
Fast forward 5 years later. I am married again,with a new husband and 7 children now.My back is killing me and we go to find out why,once and for all. I went to my GP,who ordered XRAYS,the first ones done since I was about 12,and he also ordered blood work based on my family’s history.He comes to the appointment with the news that I have AS because,he says,I have Bamboo spine and am HLAB27+. He hands me a booklet and makes an appointment with a specialist at Children’s Hospital Of Philadelphia and off I go,glad to have a name of a disease and,it is one I know of.It is a family disease so I am NOT concerned at all.I went to that appointment and this is the doctor who gave me the best advice I ever received,which is this:”Stay as thin as you can,as active as you can,as long as you can”. And,I have tried to do this. For me,it works.He also told me I would be in a wheelchair in 10 years time, which would have been 1997…..still not there,thank God! He put me on my first NSAID,Naprosyn,it worked well for awhile,and I went home,happy in the knowledge that I could be helped.
My over-riding feeling from that time was I was not too upset.I just figured,ok,carry on.It was the way my dad handled his AS,so I was going to do the same. I subsequently went back to college and became a nurse and got to experience my dream of doing that. I had to stop dancing as the doc at CHOP said that tap dancing might fracture my spine and I wasn’t willing to take that risk. And,that is how I have continued to live to this day. I take all the advice that all the docs gave me and streamline it into what I am willing to do and the risks I am willing to take. Some days are good,some are bad. I have had many XRAYS,MRI’s,etc. since those early days and they get progressively worse as I age but that is to be expected .My tests show SEVERE Scoliosis and I wonder,now,if I should have had surgical intervention back in the day? I was offered it at age 50 but,with hardly any scientific research on that age group going on,I declined. Of course,if I need it to be able to breathe,then I will re-visit that idea.I am now on SSD and still trying to find my way through the lack of stimulating work and how to fill my days but,all in all,I am Blessed.I keep busy with the children,now grown, and my Grands.We live at the beach so I am kept busy doing “beach” stuff…walking on the beach,collecting shells,swimming,sand castle making,etc.And,sweeping the sand out of the house,which is a full time job,sometimes! I also go to their activities I take narcotics,NSAIDS Soma,Neurontin;I go to Pain Management,get injections and am scheduled for RFA of my L/S spine next week and I hope it works.I am willing to try anything once…if it works,all the better!
This disease takes so much from us and can be a full time job combating the losses.My advice is…read everything you can,go online and check out all meds you are prescribed,stay as active as you can(when you can,of course) lean on your friends and family when you need to,and REACH out to others who know how it feels to have AS…you can learn so much from your ASer’s
New Jersey, United States of America