Life of a former witch

I've outgrown my wicked witch of the west ways. Reflections of life afterwards, living in the desert with two cats, friends, family, and my hot and cold love life.

Tuesday, September 16, 2003

Sorry, I didn't have a good day yesterday. I suppose the most fustrating thing is how tired I am throughout the day, no matter how much I sleep the night before. Hopefully Thursday I can start working on some answers.

Even though today is better, I'm back to long before when I couldn't chew gum. Last night and this morning I tried with a very soft piece of gum. For the next hour after I've gotten rid of the gum (due to pain) there are more severe episodes lasting for about a minute. Last week when I could chew gum without a problem makes me feel like there's another bump on the roller coaster. I never met a doctor that told me it was going to be this bad. But that's what a doctor is supposed to say...

If there's one thing I learned on the listserv is that nothing is simple with patients dealing with these related conditions. I think some (most?) doctors put up the (believeable) front that they are helping people when reality is that it will be difficult to treat these patients. I think that's why some of the doctors I saw stopped treated me and sent me to another doctor. The process to switch to a diferent doctor takes time that sometimes I don't have time for. The worst of all these doctors are the ones that dismiss you when you're no better than before (like some doctors in the ER).

It took a long while to get used to this mindset, but I eventually accepted it. After all, doctors have high malpractice insurance in which they cannot afford an increase in preminums. I still don't like it, but I've realized that my problem makes me a walking liability. I finally found a wonderful doctor, unlike the ones I've enountered. It still took a long time for any treatments or medications that helped. I suppose I can understand his perspective, but it doesn't help me in my pain situation.

I think that my journey to be pain-free is taking so long is that my symptoms are beyond classical symptoms. I also know that facial pain is one of the latest things to study and treat. For example, the MCS I had done was not available for my condition until the last couple of years.

If I'm at the point where I'm having these drastic measures for my pain, what options do I have left? If I ask my doctors involved with my MCS, they will say "keep adjusting the device". I don't share their inflated optimism today. There are days like yesterday where I just say "cut the nerve" because it's hard to think what it will be like in 20 years when I can barely get through today.

I try not to feel sorry for myself...rather fustrated or upset at myself would be more accurate. But I better get some work done since I'm catching up a bit.

(sorry if this seem like random babbling....it's what is on my mind right now).