A.S. Face 0924: Mary S.

924 Hi! I am 58 years old and this disease has so ravaged my body that I don’t even have a current picture, as the person from seven years ago seems to be completely lost.
I can remember suffering from back issues and pain, as well as leg pain, as a teenager….growing pains I was told as I was fairly tall. I couldn’t understand even prior to that why my body/back wouldn’t move quite like the other girls in my dance class. Forget the back bends! I actually found out that I was pregnant with my first child because at 24 I was having such back pain that an X-Ray was advised, but the physician would not take one unless he knew for sure that I wasn’t pregnant. Thus a blood test and a baby 8 months later…but no real explanations concerning my back. I was only told that I had rotating scoliosis. When my daughter was about one, I remember sitting in the floor cutting out pieces for a quilt for her. After some time in a cross legged position, I could not get up. In fact, I seemed frozen in that position with hips completely locked.
In 1990 I had very strange and vague symptoms in one of my legs, including numbness. It was a stressful time….which I believe was the trigger. As the mother of two, I went back to college full time, my mother had a serious breakdown and was hospitalized for weeks, and as C.O. of the local Naval Reserve medical unit, my husband was called all hours of the night getting directives to call one of his men up for first Gulf War….of course never knowing if he, too, was being called up. I was tested for everything from Lymes disease to MS. I was sent to a rheumatologist at that time who told me then that he believed I had beginning signs of RA. All other doctors poo-pooed his diagnosis.
Fast forward to 2010. My hip pain had become excruciating. I was sent for PT. I suffered the same with my back and remember having to actually ride lying down in the back seat of the car. Sent to PT again. By 2007 and after another extremely stressful time in my life, I was finally sent to rheumatologist, who just so happened to be the son of the one I saw in 1990! What a coincidence. (His father had passed away) He was the one who finally diagnosed me. I have done Remicade which did not work and have been on Enbrel for several years. I don’t get much relief but am told it will help to slow the progression of the disease. I had both hips replaced a few years ago but still struggle to regain any strength in my legs.
I am thrilled to find this means of support. Family and friends disregard my pain and immobility. Thank you for giving me an avenue to tell my story.

Tennessee, United States of America

2 Responses to “A.S. Face 0924: Mary S.”

  1. Dear Mary,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Dear Mary: So sad to hear that your family and friends disregard your pain. They, like mine, probably don’t understand this awful disease as they don’t see a lot of proof of it. It is one of those things where the symptoms are hidden (sometimes). My mother always told me I had ‘growing pains’ while I was growing up, and that is hogwash! I grew to be 5′ 11″ and a half, and now I am probably 5′ 8″ or 5′ 9″ at most. The pain is overbearing at times, and the fatigue is unbelievable. So sorry that things are not going very well for you right now. I have not had much success with biologics, but I do keep trying. My best to you in your journey with A.S. Stephania #445

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