Saturday, July 4, 2009

4th of July

Dysautonomia is an uncommon word to the usual doctors. It represents a case wherein there is dysfunction of the autonomic nervous system (ANS) such that basic, unconscious functions like respiration, heart rate, and blood pressure are simply 'no longer' regulating basic life functions, as is usual. The pathophysiology of Dysautonomia seems to lead the patient to resent the medical profession for 'not believing' the patient, for not putting a constellation of symptoms together that point to this diagnosis, and one last thing. It is my personal experience, since I eventually was diagnosed by David S. Cannom, M.D., a famous cardiologist at Good Samaritan Hospital in downtown Los Angeles. 

Today, as with every day, we did the best we could do. We visited a single parent and there is nothing like seeing the grandchildren and the grandfather sitting together. There is just something that tells the child that this person, this grandparent, is an avid advocate for the child. Sure, every child needs to feel special and it is my thought that every child should be someone's 'favorite' little person. Someone has to be there to make every little person know that he/she is special. So, let them spoil the children. They must learn what it feels like to have someone fall in love with them and teach him/her the standards of extreme love.

I needed a nap because I could not lift my head up. I drank and drank and because of grandmother's cooking, and I also ate and ate. Why does grandmother's food always taste so good? The sleep was wonderful, and then a bit of a blurry hurry was needed to get back home. My heart rate raced several times today, especially upon the completion of climbing the last landing of stairs. I feel as if the climbing redistributes blood so that my muscles get more blood supply. It is almost as if I can feel the blood leaving my head, in order to perfuse my lower legs. Ohhhh.......only 3 stairs left. I am out of breathe, tachypneic. Two more stairs, then one more stair. I walk as fast as I can with my head down. I dive into my bed. Here, I lift my legs to send a nice bolus of blood from the legs to my brain. Slowly, some very very small blood vessels are getting one hemoglobin molecule through one capillary trail. Oxygen is being delivered by this method. Slowly, my brain begins to realize that it is getting more blood. Drop by drop, heartbeat by heartbeat, the panic in my suffocation is replaced by simply being in the horizontal position. Laying down. It just feels so pleasant to lie down. No having to get a  head rush whenever I sit or stand. 

I know I can live with this, especially because now I have been off a continuous iv infusion for almost 4 months. I just have to listen to my body. If the sun is out, I have to hide from it because of sun poisoning. So my visits, my destinations, and my trips are surrounded. They are surrounded by pills and more pills, gel for this, drink water for that, wear stockings in a heat wave for survival...and yes. Thank God for one more day, and one more chance to be kind to my mother. I know she helps me be a better person. I want to be like her, when I grow up.

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