A young girl in her preteen years tosses and turns about her bed. A bed that held her and two other sisters. The pain from her hip radiates down her legs, she would cry out to her mother. Each and every time her mother come to the room, she told her, it was growing
pains she was experiencing.
That little girl was me and I recall thinking how I did not want to grow up if it was going to hurt like this. I think of that little girl now and feel so sad for her. It wasn’t her mothers fault, she did not know what was happening to her daughter. I don’t think ankylosing sponylitis was even heard of in the late 60’s, early 70’s. Heck it is hardly aware even now. People still look at me with a blank stare when I say what my health issue is.
When I started having children, I now think of how I could not sit on any sofa or chair in any kind of comfort. How when we went to visit friends or family, I would get down and sit on the floor because it was somewhat comfortable . I had a hard time giving birth to my first child, after 12 hours of continuous labour, then going to have x-rays done, my doctor told me I had a narrow pelvis and this is why the baby was not coming quickly down the birth canal with ease. What ease is that? And what was he comparing it to? I laugh at those questions now. The amazing thing is I gave birth to 3 babies without any kind of pain relief, at all. It was completely natural each and every time. I knew I had a high tolerance for pain. Some would say to that fact, they felt sorry for me because I chose to deal with my pain, manage it myself without any kind of medication.
The years go by, the bad days were not close together anymore. And when I did feel pain from my waist down, I would take extra strength Tylenol which took the pain away. And to think of it now, the pain returned when I over did my day physically in some way or other. The days of lifting babies, carrying babies, were no more, maybe that was another reason for the remission. My first child was 7 months old when I became pregnant for my 2nd child, 9 months later having a 2nd daughter. When she was 4 months old, it was found she had congenital hip disorder, which brought us to a sick kids hospital and her being put in a body cast for 8 months. I carried her on my back in a harness, when I walked to town pushing the stroller with her older sister in it. Those nights were painful for me, but I am a small framed woman, of course I would be in pain after carrying a baby on my back during the day, right?
Several years ago, I started a job I loved, a night attendant, where my duties included hourly tours of 2 buildings which included 4 flights of stairs each and every time. Within a year of being at that job, all that old pain came back with vengeance, the Tylenol was not working like it use to. I went to my doctor and voiced my concerns, tests were done and I was sent to a rheumy specialist, that is when I was told I suffered from a disease called, ankylosing spondylitis, a type of arthritis. Because I was not tolerating NSAIDS, the specialist told me I was to be put on a high dosage of calcium and vitamin D, that I would be given something to help manage my pain, the rest of my life I would be on some kind of pain killer. He advised me to work till I could not work no more, which I did. Within a year I could not keep up the pace I was going. I still had not looked into what this ankylosing spondylitis was, in any great detail. I thought, okay it is arthritis, people live with it every day, this must be like that, right?
The pain grew, to the point I would be in tears, when I woke in the morning, in so much pain, to roll out of bed, find my pain meds, cry for 20 minutes waiting for it to take effect. I lived with a couple who were good friends of mine at this point. They would rise in the morning to find me hunched over leaning on the kitchen counter, swaying in tears from the pain. She would come see me in the evening in my room, to find me in bed crying with the pain and then she would sit next to me and massage my lower back. They bought me an electric blanket, that I found to be like heaven, I loved it and how it eased my painful nights.
But I knew something was not right, something was wrong, me, the lady who had a high tolerance for pain is now being brought to her knees from it. So I began to research, I began to understand what this AS was all about. I had a heart attack at the age of 45, was diagnosed with AS at the age of 48 then at the age of 49, I had another heart attack. Which now once again, I am under watch with any medication I can be put on. I live my life managing my pain with the help of a pain med, called endocet and Tylenol four and they will not go any higher than those or administer the other meds taken for AS because of my heart issues and my intolerance of NSAIDS. However a few months back, I told my doctor I wanted a better quality of life, that even though an anti-inflammatory is dangerous for me because of my heart, I want to take one. Now for a 2 week period I do take naproxen 375 mg and then go off it for 2 weeks.
I know what my future holds with regards to AS and to be honest I don’t care to look past today, because I find the future depressing. So I spend my days doing what I love to do, writing, whether it be poetry of short stories or blogging, this is the things I love to do and I hope each and every day, what I write and share with the world inspires them to be happy, live in the moment and find some inner peace.
Yes there are days when I want to throw in the towel, when I want to scream and say why me? But I do a self check and answer my own question, if not me, then who? I would not wish this disease on my worst enemy.For those family and friends who do not understand even up to this moment what I am dealing with, it is not because I have not tried to inform them, I have many times, I pray some day they will understand. All I can do now is hold my head up high and pray that some day I will get that understanding, that more so, someday there will be a cure for AS!
My name is Cynthia, I have ankylosing spondylitis, but it don’t have me.
Enjoy one of the videos I have made since my diagnosis.
May God Bless Us All!
Live Love Laugh
Blind River Ontario Canada