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I went to a massage therapist the other day to deal with a painful back. For me, it seems, when I have a seizure in my sleep, I freeze in painful positions and later have knots within my muscles that need to be worked out by more than yoga twists.

That said, it was a last minute decision and I had to find someone within my driving distance. The amazing therapist that I usually use, but who is often booked and well out of my driving range, requires a great deal of planning from both of us.

The therapist I was assigned to that day was a former nurse who chose to move into the alternative medicine arena.  I assumed she would be open and knowledgeable about alternative treatments. When we got started, I was disappointed in her point of view about the body in general and, in particular, her attitude about alternative treatments. But it was during the session that she said something that nearly had me get up from the table and walk out.

We were discussing the chemicals that caused muscles to knot. I said that with respect to my condition, I had done some research … and that was as far as I got.

She interrupted me to say I had no business doing research and that I did not know what I was doing. She continued by telling me people needed to stay off the Internet and listen only to their doctors because they could start imagining symptoms and cause everyone problems. They should only read “patient support” sites, she went on to say. The doctor knew everything, she said, adding that I didn’t know what I was doing.

“Well,” I said in a restrained manner, “I have a degree in health information, so I guess I have a degree in ‘I guess I know what I’m doing.’” At that point I was so angry I wasn’t going to discuss my condition or anyone else’s with her. Years of dealing with seizures, bad diagnoses, related autoimmune conditions, and other people’s ignorance have left me a bit touchy.

I left, throwing her card in the trash as I went out to the car. But the conversation started me thinking.

If you have read the About page on this blog, you know I have a degree in Health Information Administration, which requires understanding, researching and codifying health information, disease information and treatment information. Does this degree mean that only people in my previous profession have the right to read information, reports and studies on the Internet, but others don’t? Hell no.

I’m alive because of the degree, because I have experienced some pretty wrong, inappropriate, and dangerous diagnoses over the years and had to overcome them through my own research, which showed me that things have changed in the health care industry with respect to autoimmune diseases and especially with Temporal Lobe Epilepsy.

Anyone who has a condition, disease or concern for a family member should learn how to discover the available information about the actual disease process, treatment, and surrounding issues. The people who survive and can work with or overcome problems and setbacks are those who purposefully educate themselves. In other words, they give a shit about what is happening to them and they don’t hand the responsibility over to someone else, like a neurologist who doesn’t see them for more than a few minutes each six months or so—a neurologist who may not have been trained in epilepsy and doesn’t understand the patient’s particular brand of TLE (been there lots).  Or my personal favorite, a neurologist who is distracted about a failed real estate deal when your life just might be on the line. And yes, that last one happened to me when I went in for an emergency visit because of extreme rage and thoughts of suicide caused by the use of Keppra. That neurologist couldn’t seem to get the fact that if I was having a life-threatening reaction to a drug, I probably shouldn’t be using the drug. If you are in tears wondering if you will survive this next year of your life, you aren’t interested in their problems with their business partner.

So how do you handle stuff like this? You read all you can manage.

Understanding where you are, who you are, and what you are experiencing gives you a voice and a level of self-respect when it comes to the most important treatments in your life. Having a realistic expectation of your care-giver is important as well.  And, an interesting outcome to self-education is that these days the doctors that I go to are much better at helping me because I am choosing them using different criteria and trying to work with them by providing as much detailed information as possible.

When I think about what the nurse/massage therapist said, it still makes me angry, but I know the world is changing and we all have power. And that power starts with the written word. It’s all there for us to unravel, it just takes a little technology and some time.

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