Re: PROCESSING is what's so bad......

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Posted by Ginny on February 9, 2005 at 19:19:27:

In reply to: Re: PROCESSING is what's so bad...... posted by RavynG on February 9, 2005 at 17:26:28:

Wow, Ravyn, I learned something new today, I've never heard of this,
ever. But if it's that rare, I guess most people haven't. And yes,
it sounds like it's a very good thing you're a night person!! Someone
like me would lead a very miserable life not being able to be exposed
to the sun. Don't get me wrong, I NEVER sun bathe anymore, but I
adore being out and about on sunny days, or letting the sun shine
through the windows. My mood changes 300% from winter to spring! I
tell folks I must have been a bear in a past life, because I think I
used to hibernate during winter, I so hate it now, and the older I get
the more I hate it. The Winter Solstice is my FAVORITE celebration,
because I KNOW the days are getting longer again!! But it just takes
so long for it to get WARM along with the longer days! Do they have
any clues as to what causes this disease?? With far too many
diseases, they only concentrate on treating (not even curing, JUST
treating) and never really try to figure out WHAT caused it to begin
with. I know with all the things I'm "supposed" to have, they really
can't say exactly what causes them, especially the fibromyalgia, which
is kind of a catch all for a myriad of symptoms. Personally, I think
if they concentrated more on what CAUSES things, they may find a way
to cure it quicker, though as Chris Rock says "there's no money in the
CURE". I'm SO cynical.

Well, I sure hope you're able to control it as best you can, it sure
sounds like a major life challenge to deal with. Maybe someday
they'll find a way to truly "CURE" things like this, instead of just
finding ways to treat them. Let us all hope.....

Peace,
Ginny

: Dear Ginny,
: Porphyria is a genetic metabolic disorder. Heme is the red in red
: blood(like chlorophyll is the green in plants)and porphyrias(there
: are 6-8 kinds depending on who you ask)mean that the heme is not
: process properly and therefore the blood is always lacking--which
: translates to low blood iron in some porphyrias and excessive
: cellular oxidation. The symptoms for me are so similar to lead
: poisoning that for many years that is what they thot I had. Until I
: found out who my biological parents were and found out they had been
: tested and diagnosed. (if one parent has it, the chances are 50%, but
: for 2 parents it is guarateed--and both mine have Porphyria, but two
: different types.)Very rare, altho more common than previously
: suspected, now that we have DNA testing.
: A hundred years ago Porphyria was called the Vampire Disease. Some
: forms cause excessive hair growth and skin scarring that leaves one
: almost transformed--so there is some connection with werewolves too.
: It does not help the reputation that I have long long black hair and
: very pale skin--LOL! My hematologists tease me all the time about not
: choosing me to be the poster-child for Porph or I will set the cause
: back 100 yrs! As a youngster I was quite 'gothic' in my style. Take
: all that and mix it up with French-Greek-Gypsy who
: practices 'CatholiCraft' and well...guess I get what I deserve
: sometimes!
: I make sure I go out in the sunlight and 'look' at the sunlight(to
: stimulate the pituitary and pineas)but I have to be covered and
: protected.
: Good thing I am night person huh? LOL
: Ravyn, Lady Heresy

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: Wow, Ravyn, I learned something new today, I've never heard of this, : ever. But if it's that rare, I guess most people haven't. And yes, : it sounds like it's a very good thing you're a night person!! Someone : like me would lead a very miserable life not being able to be exposed : to the sun. Don't get me wrong, I NEVER sun bathe anymore, but I : adore being out and about on sunny days, or letting the sun shine : through the windows. My mood changes 300% from winter to spring! I : tell folks I must have been a bear in a past life, because I think I : used to hibernate during winter, I so hate it now, and the older I get : the more I hate it. The Winter Solstice is my FAVORITE celebration, : because I KNOW the days are getting longer again!! But it just takes : so long for it to get WARM along with the longer days! Do they have : any clues as to what causes this disease?? With far too many : diseases, they only concentrate on treating (not even curing, JUST : treating) and never really try to figure out WHAT caused it to begin : with. I know with all the things I'm "supposed" to have, they really : can't say exactly what causes them, especially the fibromyalgia, which : is kind of a catch all for a myriad of symptoms. Personally, I think : if they concentrated more on what CAUSES things, they may find a way : to cure it quicker, though as Chris Rock says "there's no money in the : CURE". I'm SO cynical. : : Well, I sure hope you're able to control it as best you can, it sure : sounds like a major life challenge to deal with. Maybe someday : they'll find a way to truly "CURE" things like this, instead of just : finding ways to treat them. Let us all hope..... : : Peace, : Ginny : : : Dear Ginny, : : Porphyria is a genetic metabolic disorder. Heme is the red in red : : blood(like chlorophyll is the green in plants)and porphyrias(there : : are 6-8 kinds depending on who you ask)mean that the heme is not : : process properly and therefore the blood is always lacking--which : : translates to low blood iron in some porphyrias and excessive : : cellular oxidation. The symptoms for me are so similar to lead : : poisoning that for many years that is what they thot I had. Until I : : found out who my biological parents were and found out they had been : : tested and diagnosed. (if one parent has it, the chances are 50%, but : : for 2 parents it is guarateed--and both mine have Porphyria, but two : : different types.)Very rare, altho more common than previously : : suspected, now that we have DNA testing. : : A hundred years ago Porphyria was called the Vampire Disease. Some : : forms cause excessive hair growth and skin scarring that leaves one : : almost transformed--so there is some connection with werewolves too. : : It does not help the reputation that I have long long black hair and : : very pale skin--LOL! My hematologists tease me all the time about not : : choosing me to be the poster-child for Porph or I will set the cause : : back 100 yrs! As a youngster I was quite 'gothic' in my style. Take : : all that and mix it up with French-Greek-Gypsy who : : practices 'CatholiCraft' and well...guess I get what I deserve : : sometimes! : : I make sure I go out in the sunlight and 'look' at the sunlight(to : : stimulate the pituitary and pineas)but I have to be covered and : : protected. : : Good thing I am night person huh? LOL : : Ravyn, Lady Heresy
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