DH and I often say that education is really just about vocabulary. He can't read the journal articles I read because he doesn't know what an oropharynx is. I can't read his stuff because I don't know what Newtonian Cosmology is (And, sorry, there is not dictionary.com reference for that). Again, it's all a matter of vocabulary. You have to know the words to figure out what is going on.
I sort of feel this way in regards to PKD. I recently joined the PKD support group list serve, and I'm not sure it's doing me any good. No offense to the people on the list, it's just that they are talking about things that I don't understand. Urea levels, Procrit injections, and a whole bunch of other things I've never even heard of. Up til now, I would have told you that I was doing pretty good on keeping up with my info on PKD. But now I realize I have just barely stepped over the threshold of this world, and there is still a lot ahead of me. And a whole boatload of new words I'm gonna have to learn.
One woman on the list said that she doesn't consider PKD a "deadly disease", and that life after transplant is actually pretty good. Well, that's a relief, because there's nothing like Googling a new diagnosis and seeing the words, "Most common genetic life threatening disease" to ruin your day. But in spite of the optimism I find from everybody around me, I can't help but feel midly overwhelmed at times at all the different stuff I'm going to have to learn to get through all of this. Like I said before, baby steps, right? One day at a time....
I think I'll bring a medical dictionary to my next nephrology appointment.