I had quit my full-time job teaching preschool in the Spring of 2012, because I was in so much pain it hurt to move. I had been the one who was always running around the playground with the little ones, and I hated going from that to just watching them play. In the classroom, it was even harder, when a child would bring a storybook and plop down on my lap - the pain was almost unbearable. Or fighting fatigue while patting their little backs at nap time.
I had no idea at the time how things would turn out for me. I took a part-time job in fast food, and I spent my last two paychecks on a new camera, hoping to turn a hobby into an extra source of income. I was still hurting, and I was pursuing doctors and tests more than ever now. I wanted answers, and I was determined to get them.
I went for blood work three times that year, because the first test results were indecisive and the second ones somehow got lost. I had x-rays and an MRI. I had nerve conduction studies and an EMG, which are supposed to be no big deal, but because of the pain in my feet was more like some kind of medieval torture. I cried all through the first part of the test. I had more blood work done later, ordered by the same rheumatologist who actually listened to me, looking for lupus and who knows what else, and of course the parvovirus, which I had never heard of at the time. I have since read many articles about chronic parvo (the virus stays in the body) and how detrimental it can be, but tests showed I do not have the virus now, and I have no reason to believe I had it any time after 1998; I can only assume that once was enough for me. (There were other factors involved - that same year I had strep, I was on antibiotics several times, I was taking birth control pills, and there were numerous outside stresses - a mix I like to call "the perfect storm".)
The last of the tests for me was the small nerve biopsy of the foot. This one really was without any pain; however, I was so unnerved by everything I had already been through, that I passed out toward the beginning of the procedure! The irony of this one was that I was feeling so much better after changing my diet, and I was tempted to not go for the test (which had been scheduled pre-dietary changes), but I wanted to make sure I covered all bases, so I did what the "good" doctor asked. When I went back for the results, the podiatrist told me I had some nerve damage in my feet, "which could possibly lead to severe pain in the future". (My response? "NO KIDDING!")
I know that I endured little in the way of tests and procedures compared to some people with autoimmune disease. Through it all, I never stopped doing my own research, and I'm so glad, because I never would have known about the parvo if I hadn't "looked it up" myself after getting a positive test result - the "good" doctor didn't seem to think it was anything significant, and the follow-up visit consisted mainly of me going on about changing the way I eat and my new found health, and a young intern politely informing me, "You know, there's really not enough research to back that up."
And, at the time, I was more than a little offended by that comment. But since then, I've come to realize that for some people, that's what it takes. After all, for so long, I was searching for a name, a label, a diagnosis, thinking if only I had that, I could begin to deal with it. When I stopped looking to doctors and lab tests and started looking to my food choices, I found the answers I needed - right there on my plate. It's hard enough living with an "invisible illness", but when people ask me about my diagnosis and I tell them I have none, it does tend to bring skepticism. But the fact is, there are many, many people out there who live in constant, debilitating pain, and nobody can tell them why.
If you suffer from fibromyalgia pain, or inflamation related to other autoimmune disorders, I want more than anything for you to know, the answer could be right there on your plate!
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