Re: - Medic Alert Bracelets - Forget what else...

January 15, 2004

OK!! Here i am one more damn time. maybe i'll hang around. i just

kind of felt like i was a pest!!!!!!!!! i do NOT want to be that.

Yes, it means i get them for free. My doc helped me apply for them.

As you know, many of the mycobacterium infections a sarc patient can

get (both rapid and slow growing) and that power our disease are the

same ones that constitute AIDS. even the fungals, gram negs and

nocardia also make up AIDS. and it's my belief some of you are going

to have those, too. i had a gram neg in the pseudomonas and NJC has

found brucella and yersinia in sarc patients, two more gram negs,

that was powering sarc in some they saw.

I know that's a shock but it's true. What my ID told me is that what

I have IS AIDS. Same drugs, same dose, same everything. Ha! I think

I told you about how I finally called the AIDS clinic in my town and

found all the lovely free stuff they get. everything, even food and

reduced bills where i am going broke......free. Well, I said, i have

the SAME infections but no HIV. She did NOT believe me until she

checked out my sources and then she was blown away. Talk about

discrimination! I think in time medicine will truly prove all

rheumatic/immunes are a pathogen. An uncommon one. Like the 4 i now

found out i had. And that's a HUGE leap, eh? To go from one day of,

oh, you have chronic fatigue, and sarc to oh, you have 4 infections

any one of which could kill you adn that's what it was the whole

time. i will NEVER trust medicine again.

So yes, I get them for free.

But, moral me, there's still this awful side to it, Aisha. An awful

side!! And again, when I got them today there was the

initial " high, " and then i crashed. I got 180 pills no less. i told

t about it. you see, i saw that oprah special about aids in africa.

only now, i know i have the thing that killed what 10 million? it's

a bunch. and i face the same odds they do in surviving it. only they

can't get the biaxin. so now they have NO odds. it's almost $300-400

a month, depending on what your doc tells you take. there. i fucking

said it. one of my drugs is biaxin and no there is NO one damn size

fits all so do NOT rush out and wolf it down. god!!! i hate living

this way; i hate having to talk around some other god damn list. i

am a journalist; we don't beat around the bush. we just lay it out!!!

OK. so here's the crash. there was this point where this woman was

getting an IV. and oprah thought it was for aids. and i thought:

wiat a minute???? biaxin is a pill. and you need the other 2 pills

to synergize it. so what is the IV? well, the doc was treating her

for violent pain and muscle cramps. and don't we ALL have those?????

and then i knew: she wasn't getting the biaxin. she died a few weeks

later. and i looked over to my stove that day: there was the drugs,

all 3 of them, by the tea bags and the salt. like they somehow

belonged there, like little more than crisco and flour. and this

woman couldn't get them. but i could because i was white, american

and educated. and there was NO difference between this woman and me.

same infects. same everything. she died. i'm trying to live.

god!!!!!!!! i am crying even as i write this.

so....how to justify now getting the drugs for free when you have a

nation dying and children left homeless??????????? oh my God!!! so i

have to tell all of you this and i am a very honest person. the best

i can do is get well and then do something to change it. maybe start

that international mycobacterium foundation. hell if you all test

positive, maybe together we could do it!!!!! and then the world

would wake up and realize AIDS isn't new. it's many of the immunes.

it's the mycobacterium, the fungals like crypt, the gram negatives

and the nocardia that power a lot of the immunes. sarc included. no

lie. and then the world would see: wow, now we've got millions and

millions sick but there's only one drug. and abbott labs is holding

the world at bay. god, how do i even critize them when they gave me

the drugs for free. man, this is a moral mess.

god, i feel so awful about this. and it's funny because i'm in a

good stretch now, passed my third IRIS attack. but the morality of

it, the sheer humanity of it. i don't want to die. but these other

people will. is that fair? i just can't answer it. and me, the

person who usually hunts down the answers for everything. i can't

answer this. where would i possibly go to find it?

m

January 17, 2004

, please stay with us; your messages move me, shake me, even shame me.

As I read this post, it occurred to me that in some ways, you & others like

you, are like prophets, saying things many don't want to hear but need to

hear. I was sitting in my warm house, well-fed, secure (at least for now)

with a good-sized disability income & feeling sorry for myself! Thanks for

the wakeup call, the candor. I needed it. Rose

Re: - Medic Alert Bracelets - Forget what

else...

> OK!! Here i am one more damn time. maybe i'll hang around. i just

> kind of felt like i was a pest!!!!!!!!! i do NOT want to be that.

>

> Yes, it means i get them for free. My doc helped me apply for them.

> As you know, many of the mycobacterium infections a sarc patient can

> get (both rapid and slow growing) and that power our disease are the

> same ones that constitute AIDS. even the fungals, gram negs and

> nocardia also make up AIDS. and it's my belief some of you are going

> to have those, too. i had a gram neg in the pseudomonas and NJC has

> found brucella and yersinia in sarc patients, two more gram negs,

> that was powering sarc in some they saw.

>

> I know that's a shock but it's true. What my ID told me is that what

> I have IS AIDS. Same drugs, same dose, same everything. Ha! I think

> I told you about how I finally called the AIDS clinic in my town and

> found all the lovely free stuff they get. everything, even food and

> reduced bills where i am going broke......free. Well, I said, i have

> the SAME infections but no HIV. She did NOT believe me until she

> checked out my sources and then she was blown away. Talk about

> discrimination! I think in time medicine will truly prove all

> rheumatic/immunes are a pathogen. An uncommon one. Like the 4 i now

> found out i had. And that's a HUGE leap, eh? To go from one day of,

> oh, you have chronic fatigue, and sarc to oh, you have 4 infections

> any one of which could kill you adn that's what it was the whole

> time. i will NEVER trust medicine again.

>

> So yes, I get them for free.

>

> But, moral me, there's still this awful side to it, Aisha. An awful

> side!! And again, when I got them today there was the

> initial " high, " and then i crashed. I got 180 pills no less. i told

> t about it. you see, i saw that oprah special about aids in africa.

> only now, i know i have the thing that killed what 10 million? it's

> a bunch. and i face the same odds they do in surviving it. only they

> can't get the biaxin. so now they have NO odds. it's almost $300-400

> a month, depending on what your doc tells you take. there. i fucking

> said it. one of my drugs is biaxin and no there is NO one damn size

> fits all so do NOT rush out and wolf it down. god!!! i hate living

> this way; i hate having to talk around some other god damn list. i

> am a journalist; we don't beat around the bush. we just lay it out!!!

>

> OK. so here's the crash. there was this point where this woman was

> getting an IV. and oprah thought it was for aids. and i thought:

> wiat a minute???? biaxin is a pill. and you need the other 2 pills

> to synergize it. so what is the IV? well, the doc was treating her

> for violent pain and muscle cramps. and don't we ALL have those?????

> and then i knew: she wasn't getting the biaxin. she died a few weeks

> later. and i looked over to my stove that day: there was the drugs,

> all 3 of them, by the tea bags and the salt. like they somehow

> belonged there, like little more than crisco and flour. and this

> woman couldn't get them. but i could because i was white, american

> and educated. and there was NO difference between this woman and me.

> same infects. same everything. she died. i'm trying to live.

> god!!!!!!!! i am crying even as i write this.

>

> so....how to justify now getting the drugs for free when you have a

> nation dying and children left homeless??????????? oh my God!!! so i

> have to tell all of you this and i am a very honest person. the best

> i can do is get well and then do something to change it. maybe start

> that international mycobacterium foundation. hell if you all test

> positive, maybe together we could do it!!!!! and then the world

> would wake up and realize AIDS isn't new. it's many of the immunes.

> it's the mycobacterium, the fungals like crypt, the gram negatives

> and the nocardia that power a lot of the immunes. sarc included. no

> lie. and then the world would see: wow, now we've got millions and

> millions sick but there's only one drug. and abbott labs is holding

> the world at bay. god, how do i even critize them when they gave me

> the drugs for free. man, this is a moral mess.

>

> god, i feel so awful about this. and it's funny because i'm in a

> good stretch now, passed my third IRIS attack. but the morality of

> it, the sheer humanity of it. i don't want to die. but these other

> people will. is that fair? i just can't answer it. and me, the

> person who usually hunts down the answers for everything. i can't

> answer this. where would i possibly go to find it?

>

> m

>

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January 17, 2004