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Denise introduces herself, shares her family history of autoimmune conditions, and recalls when she knew she had an autoimmune problem.
Denise:
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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Add a Comment6 Comments
thanks for sharing your story. I was diagnosed 5 years ago but until recently had not recognized what it means. I have dealt with my health homeopathically for 30 years and that's probably why I've done fairly well. I have been having a problem finding well qualified homeopaths that understand Fibromyalgia and AS. I wondered who treated you and can they recommend someone in my area? Hope you are well . Thanks again for posting.
November 25, 2011 - 1:18pmRobyn Simon
This Comment
I'm 56 and was diagnosed 6 years ago with AS. I use methotrexate and Enbrel. My case is a mild one and thanks to an aggressive rheumologist, I am doing great. I do have flares and need to be careful about infections, but basically live a normal life now.
October 1, 2009 - 11:13amThis Comment
I wrote the above comment and did not mean for it to be Anonymous. I'm glad to have dialog with any other women about As.
Nancy
October 1, 2009 - 11:18amThis Comment
NJ,
October 2, 2009 - 9:01amThank you so much for writing. It's awesome to hear that you're doing well while living with AS. Are there specific things you would recommend that a woman ask her doctor when dealing with AS?
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I was in such shock when I was diagnosed, I don't even remember asking any questions. I would definitely ask about different medicine interactions and make sure the rheumy knows ALL medication she is taking, even over the counter. I take thyroid and my doc upped my calcium 4x and it sure messed with my thyroid. It took about 9 months to get it straightened out. If put on Enbrel and methotrexate, definitely ask about the risks and what to be careful about.
I also do the bioidentical hormone pellets which are inserted in my hip. My doc knows and approves. He said pellets are better because they bypass the liver and stomach.
October 2, 2009 - 10:20amThis Comment
Thanks, Denise, for sharing your story. As you mentioned, ankylosing spondylitis is typically considered a "men's disorder" even though it affects women too. By speaking out you have helped others understand it better. I hope you are doing well with the alternative treatments you have researched and discovered. Please keep us posted on your progress.
September 29, 2009 - 6:18pmThis Comment