Friday, March 20, 2009
I Now Have the Official Palm Pilot Diary
This whole study thing is so iffy. I am expending a lot of my own time and money and still won't know if I qualify for an occipital stimulator for another month. I'm just tired of being in pain. You would have to be at the point of desperation to put up with the paperwork! I felt for the study coordinator and the amount of paperwork she had to do and I am sure I am only seeing the tip of the study paperwork pyramid.
I believe the doctor I saw is thinking I have a chronic or transformed migraine instead of hemicrania continua. Well, I've had so many diagnosis in the last year about this durn headache that it could be anything. I had uncontrolled migraines from 1975 to 2004 - so that would be almost 30 years of migraines creating burning pain pathways in my brain.
I have filled out my first two day's of headache diary entries and transmitted them. It was very easy. The last two days have not been pleasant. Excercise seems to set The Headache romping, and after fooling around a couple of airports and a huge healthcare complex The Headache made itself known. And also eight hours of driving!!
I think I must have started to tolerate the medium high levels of pain better or am losing awareness how bad the pain is because it is consistently bad. Perhaps that has been behind my seeming three week improvement that ended this week. My blood pressure is indicating higher levels of pain than I am noticing. But really, how do you compare always bad today to always bad tomorrow? When everything is equally bad contrasts are lost. Maybe the headache diary will assist me in differentiating pain levels.
In two days my messages on my home phone are full. I will need to listen to them soon but am too tired tonight.
I'm not sure that driving four hours and then flying there, flying back and driving four hours home is the answer. Driving thirteen hours was hard also. I will keep looking for cheap affordable fares where I won't have to drive. Maybe Amtrak??
The pelvic pain was so bad this morning (I have problems standing in lines dragging suitcases with me as in going through airport security) that I asked for a pre-boarding disability pass because I couldn't stand for the 15 minutes or so it takes to stand in line and board the plane, and I didn't think I could tromp very far down the aisle on the airplane. My legs were giving out on me.
Hoping for a better tomorrow!!!