Denise introduces herself, shares her family history of autoimmune conditions, and recalls when she knew she had an autoimmune problem.
Hi, I am Denise, and I’d like to share my story of surviving an autoimmune disorder with you.
My father was diagnosed with ankylosing spondylitis when he was in his early 20s. What that meant is that his spine was calcifying itself, solidifying all the way from top to bottom, which is what the disease does. You often see little old men who are bent over like they have been sitting in the chair and have just tilted over. That’s ankylosing spondylitis.
So, it actually eats at your spine and creates an inflexible column of bone around that spine. So, he was diagnosed with that. I grew up in a family that was dealing with somebody who was suffering from the kind of pain that this process causes every day of my life and never considered that I would have it because it’s considered a men’s disorder. So I never thought I would have it.
When I had reached my mid-20s, I had had a cortisone shot under doctor’s supervision for allergies and the cortisone–it turned out I was allergic to cortisone, so it had created, actually caused my immune system to collapse, which allowed the ankylosing spondylitis that I didn’t know I had to begin to operate within my body.
By the time I was 28 I could no longer bend my neck forward and the pain of trying to lay down or hold my head up during the day was oftentimes excruciating. I remember lying on my bed at night and just crying, trying to straighten it out.
So by the time I was about 33, I would literally have to roll out of bed on to my hands and knees because I could not sit up. I couldn’t come upright in bed. So, I had had to fall out of bed so I could begin to lift myself with my legs. There was no other way for me to get up.
I’d been to a doctor at that point. hHe had happily told me, after looking at my x-rays that he was excited because it’s the first time he had ever seen it, “You have ankylosing spondylitis.” No, I mean I couldn’t imagine it. I had seen how my father suffered. I had seen the drugs that he had to take and I was just devastated by the thought that I might have this disease.
But by the time that you are having to roll out of bed because you can’t sit up, you’re beginning to think, “Okay, I have got to do something about this.” So I pursued the natural allopathic medical plan for ankylosing spondylitis, which is to put you on Indocin, a very high kind of a steroid which of course didn’t go well because I don’t do well on steroids. And the only other thing that the Mayo Clinic had to offer me was cortisone shots and they said, “We can’t give you that because we know what it will do to you so, we are really sorry that you can’t walk anymore but there’s nothing we can do.” And at that point, I had no choice but to go look for other alternatives.
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