Wednesday, July 30, 2008

what my friends are teaching me about life and death

I have several cases, instances where disease has hit home to people who are like family to me.. days turn to months in hospitals, rehabs, dr offices... mis diagnoisis, immediate diagnoisis.. which is more devastating? finding out now or later.. getting a death sentence or being told you will live with disability for the rest of your life.. being told any day is your day.. telling your kids, your spouse, your parents, your aunts uncles and cousins.. your close friends.. neighbors, co workers.. how will they react.. how will you react???

diseases and syndroms that nobody has ever heard about but then once you do just a little internet digging you find.. it's not that rare at all.. in fact... a baby born every 30 minutes will have one of the hundreds of forms of Lysosmal Disease.. a death sentence. it could be months or years for each child.. it's genetic, both parents must have the gene.. meaning how could we have been so unlucky to meet, fall in love, make babies and pass this horrible illness this fate to our child?? why..

forms of Musclar Dystrophy are the same.. one in particular Friedreich's Ataxia lets a child live a normal life.. they can remember running, jumping, playing.. then one day their balance isn't so good.. they fall, they are weak.. and depending on the person they are eventually wheelchair bound...

Gillian Barre Syndrom 1 in 1,000... you can get it from a immunization, an operation, having a weak immune system, and now I'm seeing some people who swear there could be some genetics involved.. both a mother and a daughter could both wind up with GBS.. another syndrom that strikes without warning.. misdiagnosis, lots of tests and within that time the patient just gets weaker.. to the point that their heart or lungs could stop working all together. Paralyzed they can not blink, chew their food, smile, move their arms or legs. Most will have lasting effects for the rest of their lives and worse it can come back once you've had it..

Ehlers-Danlos.. okay I've only heard of one person with this syndrom that I know.. but he has been hospitalized now for months, was actually in a medically induced coma because his body needed time to heal. Woke up one night not feeling well, went to the ER they sent him home, by morning the ambulance had to be called because his gut was filled with blood. This syndrom is genetic, there are believed to be 6 different types, basically it weakens collegan that also normally plays a role in binding together the cells of our tissues including the skin, tendons, muscle, and blood vessels. So basically you could be bleeding out inside your body and have no idea..

of course.. more common disease cancer.. all types.. all over the place.. so many people I know have been touched by every cancer you can name.. both my parents have had cancer at one time in their lives.. both in their 30's.. I'm 31.. tick tock tick tock... so many out there yet to be diagnosed.. so many diseases and syndroms that most people don't ever hear about or learn about until someone they love is effected.. until that persons life is taken from them..

30 and healthy as a horse, a new born daughter and 2 year old son.. a house with a picket fence, the dog and the great husband too.. it was the day that should have started their lives with everything they wanted.. and yes she lives, and yes she will improve physically.. but she won't move forward in life without each step being a privlege to her, each breath knowing that she was tested, she'll win.. she's got the motiviation.. and I'll ask her the next time I see "what am I taking for granted?? Tell me now so I can take them in" from going to the bathroom myself to walking my dog.. it's all being taken advantage of every day.. is this a sign? the center of the storm? I've had the worst happen to my closest family and friends and I still live the way I do.. should I be more thankful? should I be doing something else with my life. I'm not saying I live horribly or don't live life.. but it makes you stop and think.. and sometimes I have to think "what is next" because it seems just when I thought I've seen, heard, and lived it all.. I'm thrown another curve ball.. and I wonder am I being tested too??