Tuesday, December 11, 2012

Philadelphia

 I saw the movie Philadelphia again last night ( at 4 am, hello insomia!) and I guess it just struck a nerve or maybe gave me an enlightenment. If you dont know the movie (extremely shortly synopsis) its about a lawyer- tom hanks- that has AIDS, after his boss finds out hes fired. Goes into discrimination and medical ect.
So anyhow it got me to thinking about lyme disease, the chronic issue of it being a virus- how it seems like once you have lyme that simple little colds turn into long illnesses, then into walking pneumonia, then pneumonia that needs hospitalization, organ issues, ect. It just keeps getting worse and worse. The sad part is that it takes so many years, too many. Family and friends get tired of us being sick, WE get tired of being sick. SO many commit suicide because of the frustration and loneliness. I could probably count 5 to 1 the suicide deaths to medical deaths.
Personally I have ups and downs. Right now I'm kind of down because a fellow lymie friend lost her little one the other day due to a fatal birth defect. To me it just reaffirmed that our bodies are too messed up to carry life... I just feel so bad for her.
It sucks that like an AIDS patient every time we get sick itgets so serious with us and progressive. Even though Im doing basically better I got a cold that everyones been passing around- Where others got the sniffles, maybe a little throat issue or cough; I caught pneumonia from it within a few days and was out of normal activity for a week and now 2 weeks later Im just now getting back to where I was. It sucks.
Imagine yourself in my ( a lymies, or even an AIDS patients) shoes- you have a disease that kills your immune system causing you to catch every cold and become sicker than every one else around you, your joints randomly swell. You have almost no idea when you go to bed at night if youre going to wake up to a knee thats twice its normal size or a blinding migraine or if the sniffles one day are going to turn into a huge lung issue or heart issue or a virus thats going to attack the thyroid. So many things. Then on the outside, if lucky, we look sick- unfortunately not always are others able to tell when were in pain or having a rundown day because we deal with it so often. How about the fact that one of my petsitting jobs- after finding out I have lyme- refused to use me again and asked if i could have infected their house?! Come on- how rude! Thats like asking a cancer patient to use a seperate door because you dont want to catch their disease.
It just makes me sad knowing what is to come.
Medicine is not advancing with lyme disease, theres so many unkowns, controversial testing and treatments, politics involved and who are our advocates? others of us that are sick! Sadly quite a few are not mentally stable either- I dont know if its rage and confusion BECAUSE of the lyme or because of the frustration due to lack of care, sympathy, treatment.

 Its like we are the New Age AIDS victims- How many of us have to die before we get help?



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