Friday, September 11, 2009

With 9/11/2001 on everyone's mind out here, the sky was cloudy. But the air? It was unusually warm, as if someone turned the oven on too high. Visited my cardiologist today, who does not yet want me to perform cardiac activity. I get short of breathe (SOB) even if taking 1 flight of stairs, and I've learned how much my mind wants to scream when my body wants to move. But Can't.

Went out to dinner tonight, something that is an accomplishment for me. I liked it mostly because I could sit in the car without worrying about sun poisoning during the drive. I actually got to sit in the front seat, something I am unable to do on sunny days. It was good to laugh with family and friends.

Tomorrow, my mother is having a big day. Packing for an overseas trip, worrying about me and our child. Sweet. And unexpected. Maybe when some one is about to die, or is conscious of the beauty of each day: little smiles on someone's face, little cheers and love. 

I've learned that the low blood volume associated with dysautonomia really has aggressive presenting symptoms, such that it bears another look. Older literature would have us eat an increased salty diet, so we can retain the water and get our blood thinned out a little so it could flow more freely, even to the tiniest capillaries in the brain. Since being off the iv, I drink perhaps 3-4 liters/day or more. I always try to come out 'positive' or 'equal' to my output. So you see that total body water and total body volume are important situations to first cure. Then perhaps one could stand up. Jobst Stockings? Lay in bed and point your leg up to the sky before putting the Jobst on. Then as you put the stockings on, you drain the blood from your legs. Point being that you should have an increased distribution of blood flow to the upper body, especially the brain. A little blood to the brain is always a good thing. The low blood volume status of those with dysautonomia, I think, is the first thing to maximally correct.

Sun poisoning today is so bad that my skin is crunchy and red. My face itches, like a thousand pins are pricking it from inside out. Lovely big, lips. No, they are not collagen implants. It's my anaphylactic reaction to the sun. The simple sun. Now my enemy, my wreaker of havoc.

Thank you God, for another day. Now, perhaps at 1 am, I may lay my head down to sleep. May God be with you and Bless you each and every day.