Why I’m starting this blog 04/17/2012Posted by thetickthatbitme in meta-blog.
Tags: Borrelia, hermsii, illness, patients, tick, tick-borne
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1. When I first started having problems, I thought I was alone. I even thought, some of the time, that the problems were just in my head. I thought my overwhelming fatigue was just from me working too hard. When I took time off, I thought the fatigue was just laziness. I thought the pain was just from the back surgery I’d had, even though I was supposed to be fully recovered within 6 months and my surgeon said my images looked good. If I hadn’t had the help of my family, especially my father, who I’m lucky is a physician specializing in infectious disease, I would have gone undiagnosed for who knows how long. So here’s reason number one: awareness.
2. Knowledge is power. Most people don’t understand until they get really sick how difficult doctors, hospitals, and insurance companies can be–most of the time, dealing with any of the three just makes me feel sicker! I want to share with you what I’ve learned during my many patient experiences, in the hopes that that information will help you advocate for yourself.
3. There’s a lot of misinformation out there–and by out there, I mean not only on the Internet but also in books and some doctors’ offices. I am not a physician, but I am a smart cookie; I read voraciously, ask a lot of questions, and take good notes. I’m an educator with a research background, and I understand more about statistics and research methodology than the average bear. I also have access to a variety of medical journals and other resources that the average patient does not. I am not the sort of person who’ll let a question go unanswered if I can help it.
4. When I started getting treated for Borrelia hermsii, my doctor invited me to join a support group for other patients. I don’t think I’d ever joined a support group for anything prior to this, so I wasn’t quite sure what to expect. A lot of doctors don’t really endorse what I call the touchy-feely aspect of patient care. They underestimate the power of the patient’s emotional state. Lucky for me, my doctor isn’t like that. He is professional and runs a clean clinic, as every doctor should, but it is also a place filled with laughter and music. When I met the other hermsii patients, who were in various phases of their treatment, it was suddenly as if I’d broken through a wall. When it comes to most of my other health problems, I don’t have any friends or colleagues who can relate–most people have a hard time believing I’ve gone through what I have at my age. At the hermsii group, though, they all connected with me instantly. Everyone had something to contribute. Everyone listened. I was amazed at how educated my fellow patients had become about our affliction and at the sophisticated nature of the questions that they posed to the doctor. As a teacher, I marveled at the dynamic of this learning community. As a human being, I marveled at the healing that went on in that hour and a half, without drugs or machines (though I don’t deny the necessity of IV antibiotics in the treatment of hermsii). During that meeting, I wished that every patient with a tick-borne infection could be in that room with us to ask questions, to listen, to find proper treatment, and to heal. This blog is my effort to expand that room to include all patients who need answers and who want to share their stories.