Posted by Jim Crandall on June 04, 1999 at 13:10:24:
**Long and rambly--I want to rant but don't have the strength**
Once again I am given renewed strength by reading this site and having the bittersweet realization that we are here for each other.
I don't post very often, I don't talk much either; but I read this site a lot. I am touched by the recent thread about shadows.
About four years ago at the end of a cluster cycle the last headache didn't quite go away--it sort got stuck on the way down. It ranged from #1 most of the time to occasional bouts of #4. It was always there--24X7. It was annoying; but if I were well rested I could deal with it. Last July the baseline #1 started to creep upward (on the scale so wonderfully put in words recently). By the end of September the constant daily headache was starting to have regular peaks so I suspected another cycle starting. Predisone and O2 got my through a short (only three weeks) cycle. Although prednisone puts me in a stupor; it does seem to flatten the pain a little.
This time around the last headache of the cycle seems to have stuck at around #4 or #5--this really sucks. I got a new neurologist who is trying very hard to help. Once a month we tweek or change my medication. Some things seem to help a little or help a lot for a little while. This past month taking Paxil and Depakote I had six days in a row feeling like I had energy and hardly any pain. That six-day stretch ended yesterday. I am very depressed about that.
I have found that I can be guaranteed a short respite from the pain when I eat. As you might imagine, I have gained some weight--not a huge amount. My wife is very upset that I have gained weight. I don't understand her attitude at all--fer Christ's sake, I am still alive, I am still the primary parent of our delightful daughter, I still work full-time, I am still in pain 90% of the time. (guess I can work up to a rant, after all)
In these past few months I have asked myself many times,"What does the end of my rope look like?" Then I come here and you hand me a whole bunch more rope and a whole bunch more hope.
Thank you.
I see the neurologist on Monday. Maybe next month I'll get a few more pain-free days.
Hugs to all
Jim