Well today has been a VERY challenging roller coaster ride. In fact, this whole week has been that way.
Sunday, I went to Lansing with my family to meet other people with IH, it was very different to meet Face to Face people who have the disease that has literally been taking so much out of me.
Samantha who coordinated the whole event along with Jenn from Grand Rapids area and Monique and I From the Detroit area were there, we were expecting at least 2-4 more people but they cancelled last minute, that I have to say was kind of disappointing, the drive was very hard on two of us and we have been paying for it ever since.
Sunday I had my first low pain day in ages, it hovered around a 4-5 until we got home, that was purely the grace of God because I know I could not have handled a rough pain day and travel.
Monday my pain was back to normal, but nowhere near what it has been growing to over the week, but I had other things stressing me out. Lauren has been having issues dealing with me being sick and My heart was tearing in two, We were blessed with the book Caitlin's Wish, by Victoria Taylor, A Recommended read for ANYONE who has children and has this Pseudotumor Cerebri/Intracranial Hypertension, It truly will help the whole family see what the patient feels, even if in just a small way.
A good friend of mine in Texas with PTC was supposed to have a "simple" procedure done Monday and wound up in ICU for two days, while she is recovering nicely now, it's still traumatic knowing how hard it's been on her, she has been such an inspiration to so many and we miss seeing her online.
Tuesday my pain decided it was going to increase even more but I was still not in the mood to go to the ER. Wednesday night, a Lady from Church who has been waiting for a liver for a transplant got the call and got her liver this morning, yes Tax day April 15, 2010 will be a day Sweet Sue will remember for ever as a day of second Chances, God has truly blessed her today.
My head has decided that it doesn't know if it wants to have Chiari headaches, PTC headaches, Tension headaches, or Migraines, or likely a LOT of all of the above.
I am in more pain than humanly imaginable. What started off as just occipital pain (back of head) has moved behind right eye (bad eye) then left eye (good eye) and now has decided to take over where my sinuses are too, then ears, shoulders, back and neck, then radiating down arms and legs. Even my hair and teeth hurt. I don't know what to do…I see the dietitian on Wednesday next week and I see my neurologist in May. I am seriously thinking of calling him if it doesn't let up, but I have to drop off some stuff at my primary doc and maybe I will ask them, or maybe I will hold off til my stress test and see what happens then. Dunno.