Lyme Disease a new adventure

Hi, this is new. I would like it to be posts, but also don’t want my blog to be all Disease stuff, so I’ll just add this “Blog” into the healing section.

One belief I have strongly is that “Pain is your friend, it tells you when you’ve done something stupid.” This may be amusing enough when you can spot the mistake you’ve made- like competing in the SCA heavy lists- but not so much when you need to learn something profoundly life changing. Just before AElfwine died he told me “I”d rather have gone through this than go back to work at Global.” For two years he’d been saying that his life was perfect, he just wanted it back. Anything better can be idealized when you have something really horrible to which to compare it, and it’s hard to recognize something wrong with the status quo.

A more accurate version of the joke would be that I believe that pain is a signal from your body telling you something is wrong. The worse the pain, the more your body is trying- desperately- to get you to pay attention: “Look HERE!” “Fix this!” We are not good at figuring out what the pain means.

Not only do most of us lack the basic information of where our heart, kidneys, luterus, etc are, we are raised to ignore pain. Work through it. Don’t complain. What I have tried to teach my kids is the difference between complaining and communicating. Some of it is in the ear of the one listening. Any description of discomfort not reported to a doctor is a complaint. This is not useful because you can never tell who might have the answer, if they only knew you had the symptom.  So we suffer in silence (or whimper, or hint).

I have been whimpering a lot. Mostly from pains in my neck, head, shoulder, back, and long muscles. At the war I tried lots of different pills from friends: Aleve, Motrin, Midol, Excedrin, Tylonol, they’d often work once, for a few hours, and then most stopped even working at all. At the same time they carry these warnings- take this more than three times a day and you’ll damage your liver. So I gave up on them. I had found something else that did work. Hot water running over the hurting muscle made the pain go away- and if I got back to bed quickly enough (the bath house was about 100 steps from our booth) I could get to sleep before it started again. Often I didn’t even notice that I had been moaning until I heard it. What I didn’t know was that a few feet away the girls were hearing and crying in their own beds because they couldn’t help.

Getting a diagnosis is a huge relief. I can only imagine how horrible it must have been for the many people I know who took months of telling doctors that they were in pain (“On a scale of one to ten, how much is it?”) and got no help, or even belief. It’s like they figure that if a pain doesn’t respond to medicine, it must not be real. Given that they know how varied and individual responses to medication are, they should really know better. I recently watched a clip of two doctors debating Lyme treatments and one advocated “scientific” diagnosis. If you can’t confirm it with a test, it’s not “scientific”. The other figured that if the treatments helped the patients, that was proof enough. I’m with him.

Anyway. I expect that the next few months are going to be a major learning curve for me, and suspect that there are friends, and maybe down the line, people who get Lyme disease who’d like to read about the progress in a personal way, so I’ll try to put a few thoughts down here.

I’ve pretty much used up my ability to sit up for now- I’ve been at the computer fir about 90 minutes, and want to lie down again. Tomorrow I’ll try to make a rough timeline of what’s gone on so far, but also believe strongly in rest.