The first time I DANCED in two years

The first time I DANCED in two years
Dancing is pretty tiring, but I'm still gonna get dressed up and try

Monday, February 1, 2010

Things That Bug Me

Porphyria is apparently a very very rare disease. But lately I have been hearing a heck of a lot about it. Several days ago there was an "Law and Order, SVU" show where the killer was a really disgusting porph who I'd hate to run into (though thankfully for the sake of all mankind was castrated and killed before the end of the show..something I think I mentioned in an earlier blog)
Well now "CSI, Miami" is bringing out the porphs as their killers. "Castle", the show that helped me figure out and later diagnose my own Porphyria, also featured the character who played a porph in a negative light- a deranged suspect (who at least on this show wasnt the killer.) How come we're always the bad guys? It seems to play off the "vampire-creepy" aspect a bit, but Id like to see just one show where we were portrayed decently. "Castle" doesnt count, because the person who was afflicted with Porphyria there had such a strong degree of hallucinations he really did believe himself vampire, and though yeah we hallucinate REALLYYY badly, I dont think we're all that extreme which is how it was portrayed- Porphyria along the lines of schizophrenia with the twist of an extreme sunlight allergy. Perhaps some porphs are like this and I just havent met them yet; Heck I havent met any porphs. I wish I will.. I would love to meet someone who could understand what I go through.
Thats sort of how I was able to understand why the killer-porph in "CSI, Miami" did what he did. Of course, I thought it extreme and an over the top way of stating his point, especially in a world when the points of people trying to make them arent even gotten anyway and the world just focuses in on the act themselves. This poor porph developed a late-onset form of Porphyria that came about during his adulthood, after hed already been used to living a full life in the sun. He went mad in his apartment, and took to spying on people who actually had their lives intact... or could go out unharmed in the day, I mean. He was appalled at what he witnessed, people "wasting" their lives away, and took to killing those who in his oppinion didnt value the treasure that was life itself.
I just bitch these people out.. Murder seems a tad over-the-top to me. Plus I dont think they will be as accomodating to my needs of colored lighting and covered windows in jail.
It is despicable to me how people throw their lives away. I have a friend who has Lyme, yet insists on going out and getting drunk every couple nights, further destroying a liver already probably getting decimated by long term antibiotics that are essential to saving his life... After all you can always get a new liver, you cant get a new body, as I told one doctor once who was against long-term Lyme treatment. However the process doesnt need to be sped up; perhaps a transplant doesnt take? Or there is no suitable donor? Are these not things to consider before one drowns ones organs??
I know several people who even admitted to me (actually more than several cos its three) that they thought they had Lyme but they refused to get tested. It was almost as if they enjoyed being unable to work (which I'm sure two of them did) and the sympathy that they tried to eek from their position. Which positively disgusts me.. It was just like when I knew this woman who had cancer- a small bit, but she was going for chemo to blast the last of it. I said since it was small to go to some alternative doctors, try rife machines, etc. there are lots of alternative medicines that actually work (generally from overseas but are coming to the US, and luckily primarily in the NYC/PA area where we live) but she just sort of looked at me and said no... she thought that stuff was great for some people but she was going to stick  with her chemo. After which she went on another tangent about how horrid it made her feel. Which made me kind of go "auuugh" inside: If you think the stuff works, try it and stop your complaining woman!!!
People can be so demented, and its disgusting how a longingness for sympathy or lazyness can allow them to actually actively let themselves sink into a slow.. well suicide. Because that is what it is if you know there is a problem and refuse to do anything. I sort of am afraid this lazyness and like for sympathy will be the death of one of my aunts, who several of the family is SURE has Lyme, and was even bit by a tick and got a ring years ago (and you have to have Lyme to get the ring, its a LYME RASH, hello.) My uncle, her husband, was even positively diagnosed by a test with a forty percent accuracy rate.. which means he had to be prettyyy ill. Which he is. When a test that even isnt a damn test, something never meant to BE a test, let alone test for this, was used and duh it came up negative because it wasnt a proper test, he now thinks he does NOT have Lyme, though he has no idea what is wrong with him. However, since the doctor gave him antibiotics for a decent amount of time when they believed him to have Lyme, hes temporarily feeling better, heightening his denial. I keep saying, as does my mother, when they get out of his system he will feel even worse than before. He had the tail of the spirocete- Band 41 on his Western Blot (which is a really crappy test because it has a 60 percent false negative rate) and people who have failed that test merely because they have had one band- you have to have five according to their standards, and they throw one out because of a 1980s vaccine that made people sick with Lyme... a band I had though  I was never alive during the nineteen-eighties, and thus I only had four bands on MY Western Blot(s) and failed every time- anyway people with only that one band have wound up fully paralyzed before theyve received treatment because of this crap test. I certainly have Lyme, because I was also fully paralyzed (oh and guess what! had band 41!) Unable to speak, eat, go to the bathroom- Mom changed my diapers- or even barely breathe or swallow my own spit. I was a blob. And now I am blogging. I am much better. Last night I was on the floor playing with my cat in the living room. But two years ago, when treatment was first started, I was on deaths doorstep. And I have the itching feeling thats what its going to take for my aunt and uncle to see a real Lyme specialist, which makes me both saddened and truthfully... disgusted, since they know everything thats happened to me and my mother has sent them so much information.
I apologize for not writing yesterday. I was going to, but I collapsed asleep after hours of working on a pen-and-ink on rice paper. Its really nice and large, and very detailed. I shall post a picture probably later today or tomorrow depending on when I finish the last details.
Take care everyone- Good morning to the norms, Good night to the porphs*
@>--->------ Jenny

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