hello

[Guest guest]

In a message dated 8/21/02 11:06:53 PM Eastern Daylight Time,

esma1999@... writes:

>

> was very distasteful to forward an email like this.....

>

Amen

~s, GRADUATE of Class 2002~

" Challenges are what make life interesting; overcoming them is what makes l

ife meaningful. "

- J. Marine

[Guest guest]

THIS WAS A PRIVATE EMAIL I SENT TO A LIST MEMBER THAT SHOULD HAVE BEEN RESOLVED

BETWEEN ME AND HIM, BUT HE CANT DO HIS OWN SPEAKING UP SO HE SENT IT TO OTHERS

THAT ARE NOT ENVOLVED AND DONT KNOW THE WHOLE STORY BEHIND ME WRITING THAT EMAIL

TO HIM. THIS PERSON WHO DECIDED TO SHARE OUR PRIVATE BUSINESS WITH THE ENTIRE

LIST IS MISSING THE POINT AND YOU KNOW NOTHING ABOUT THE RELATIONSHIP CODY AND I

HAD. SENDING A PRIVATE CONVERSATION TO A PUBLIC LIST IS IMMATURE AND NOT AT ALL

WHAT THE LIST IS MEANT FOR.

LAUREN

turbokev wrote:I am posting this to try to be helpful with this dispute that I

am

not involved in. I see some major anger here that needs soothed.

From: Biancucci [mailto:laurenmarie791@...]

Sent: Wednesday, August 21, 2002 5:07 PM

codemann@...

Subject: THE TRUTH

cody, if you want the truth as to why everybody is pissed and fed up

w/ u, then fine. i wasnt even going to bother because i wanted to

spare you that much, but then i need to remember, you are an ADULT,

and sometimes things we say arent sweet and suger coated. you

think i dont want a friendship w/ you because you " live far and are

not able bodied " ? --ummm, u definitely got it all screwed

up!....one of my best friends, becky, has sma and lives across the

country--we've been friends for 4 yrs and i dont have to pretend to

be nice to her. shes a true friend. i liked u at first cody, but

after awhile, thing just piss me (and everybody off)....i sometimes

wonder if im talking to a child. you make remarks about brookes

needing to learn a lot, but then look at you. you think you have

any more life experiences than her just cuz you are a couple yrs

older? you have no life experience and u blame it all on being

disabled. thats a cop out and gives the rest of us a bad name.

disabled people can be lazy too cody, so dont think just cuz u need

24/hr care that its an excuse to sit on your ass and make nothing of

your life while u bitch to everybody about it. nobody is going to

change your life, you have a brain, use it. and u cant say the

lame excuse of " im more disabled than u " ---thats a bunch of crap cuz

we both know many on the list and in this world that are vent

dependant and work full time, or even part time, volunteer, have

social lives and do good for the world rather them sitting in their

own pity party. ive told u that is what pisses me off about some

disabled people, and i tried to help u (not pretending) but i got to

the point where i felt u had excepted your life as it is--which i

dont agree w/, so it gets hard to pretend i support u. Honestly, i

think u are a momma's boy. it pisses me off that u say u want

things to change, and then i ask about what youre doing to make it

change---nothing. life wont just happen cody--it will leave u

behind like its been doing. i mean youre 24 yrs old, its time to

grow up and be a man and stop using your bad curcumstances as an

excuse. i realize youre life is hard, but we all got shit to deal

w/. you think its easy for me to go to school full time, get a

4.00 GPA and work 16 hrs a week plus hire responsible PA's??---hell

no, its hard, but i do it cuz the alternative is sitting home making

nothing of my life. life takes work!...and it wont happen w/ your

mommy holding your hand for u. u need your own life cody. youre an

adult. get a social life besides your mom--dont u want that? hire a

PA/nurse so your mom wont be so burdened and u can get some space.

what normal 24 yr old guy wants his mommy w/ him all the time---yea,

youre used to it so its most comfortable, but grow up already, your

not a child!...change isnt supposed to be easy. then theres the

whole issue of your parents taking your ssi while they both dont

work--that is even more screwed up, and yet it doesnt seem to bother

u. if u had that money, u could be independant, or at least try.

you earned that money cody and its yours, not theirs to pay the

bills w/. you have totally gotten yourself stuck cody, and i cant

continue to try and give advice to somebody who will never listen.

u dont have a desire to do anything, so when we talk, what do u have

to say but how " bored " u are...well, i cant have a one-way

conversation cody, so if you have nothing to talk about, it makes it

hard. if youre so bored then get out and do something w/ yourself.

fine, maybe it will take time to get a good PA or nurse to take u

out, so why not go to school from online instead of just talking

about maybe doing it. And then you talk about all these online

friends u have--brookes, or jess, and yet, of all these people u

have called your friends, u have BAD MOUTHED them to me and told me

their private business---it doesnt matter if u were in a " fight " w/

them, friends dont do that. do u ever hear me or brookes or others

bad mouth our friends--NO...and please dont give me the crap about

me being like a sister to u and how i broke your heart and all that

shit--please cody...lets see, of all your female friends that ive

known, you have fed them all lines about how theyre special and u

want to date them and theyre so sexy or whatever.....do u like every

girl that talks to u?...i think id call that incredibly desparate.

find a girl and get to know her before u start falling for her....i

wanred u over and over not to fall for me, so its your fault if u

got hurt...i also have to wonder , how can i genuinly be YOUR friend

when u feed all these girls the same lines, and we have not a damn

thing in common? think about it. its a fake friendship and that is

the reason why. you talk to us cuz we are youre last resort and

your bored so u have nothing better to do. how do u think it feels

to have you message me saying " Im bored " --well gee, im glad u

chose me to entertain you, how lucky i feel......we have nothing in

common cody, dont u get it....i am trying to live a full life,

trying to do things, but all i can do is tell u about it because u

dont want to do that. i think u are a good hearted person cody, and

im sure u hate my guts right now for what ive said, but youre an

adult and we cant all keep protecting you from reality. the truth

and reality hurts sometimes, but maybe it will change things.

lauren

[Guest guest]

u need educated

I am posting this to try to be helpful with this

dispute that I am

> not involved in. I see some major anger here that needs soothed.

>

> From: Biancucci [mailto:laurenmarie791@y...]

> Sent: Wednesday, August 21, 2002 5:07 PM

> codemann@c...

> Subject: THE TRUTH

> cody, if you want the truth as to why everybody is pissed and fed

up

> w/ u, then fine. i wasnt even going to bother because i wanted to

> spare you that much, but then i need to remember, you are an

ADULT,

> and sometimes things we say arent sweet and suger coated. you

> think i dont want a friendship w/ you because you " live far and

are

> not able bodied " ? --ummm, u definitely got it all screwed

> up!....one of my best friends, becky, has sma and lives across the

> country--we've been friends for 4 yrs and i dont have to pretend

to

> be nice to her. shes a true friend. i liked u at first cody,

but

> after awhile, thing just piss me (and everybody off)....i

sometimes

> wonder if im talking to a child. you make remarks about brookes

> needing to learn a lot, but then look at you. you think you have

> any more life experiences than her just cuz you are a couple yrs

> older? you have no life experience and u blame it all on being

> disabled. thats a cop out and gives the rest of us a bad name.

> disabled people can be lazy too cody, so dont think just cuz u

need

> 24/hr care that its an excuse to sit on your ass and make nothing

of

> your life while u bitch to everybody about it. nobody is going

to

> change your life, you have a brain, use it. and u cant say the

> lame excuse of " im more disabled than u " ---thats a bunch of crap

cuz

> we both know many on the list and in this world that are vent

> dependant and work full time, or even part time, volunteer, have

> social lives and do good for the world rather them sitting in

their

> own pity party. ive told u that is what pisses me off about some

> disabled people, and i tried to help u (not pretending) but i got

to

> the point where i felt u had excepted your life as it is--which i

> dont agree w/, so it gets hard to pretend i support u. Honestly,

i

> think u are a momma's boy. it pisses me off that u say u want

> things to change, and then i ask about what youre doing to make it

> change---nothing. life wont just happen cody--it will leave u

> behind like its been doing. i mean youre 24 yrs old, its time to

> grow up and be a man and stop using your bad curcumstances as an

> excuse. i realize youre life is hard, but we all got shit to deal

> w/. you think its easy for me to go to school full time, get a

> 4.00 GPA and work 16 hrs a week plus hire responsible PA's??---

hell

> no, its hard, but i do it cuz the alternative is sitting home

making

> nothing of my life. life takes work!...and it wont happen w/ your

> mommy holding your hand for u. u need your own life cody. youre

an

> adult. get a social life besides your mom--dont u want that? hire

a

> PA/nurse so your mom wont be so burdened and u can get some

space.

> what normal 24 yr old guy wants his mommy w/ him all the time---

yea,

> youre used to it so its most comfortable, but grow up already,

your

> not a child!...change isnt supposed to be easy. then theres the

> whole issue of your parents taking your ssi while they both dont

> work--that is even more screwed up, and yet it doesnt seem to

bother

> u. if u had that money, u could be independant, or at least try.

> you earned that money cody and its yours, not theirs to pay the

> bills w/. you have totally gotten yourself stuck cody, and i cant

> continue to try and give advice to somebody who will never

listen.

> u dont have a desire to do anything, so when we talk, what do u

have

> to say but how " bored " u are...well, i cant have a one-way

> conversation cody, so if you have nothing to talk about, it makes

it

> hard. if youre so bored then get out and do something w/

yourself.

> fine, maybe it will take time to get a good PA or nurse to take u

> out, so why not go to school from online instead of just talking

> about maybe doing it. And then you talk about all these online

> friends u have--brookes, or jess, and yet, of all these people u

> have called your friends, u have BAD MOUTHED them to me and told

me

> their private business---it doesnt matter if u were in a " fight "

w/

> them, friends dont do that. do u ever hear me or brookes or

others

> bad mouth our friends--NO...and please dont give me the crap about

> me being like a sister to u and how i broke your heart and all

that

> shit--please cody...lets see, of all your female friends that ive

> known, you have fed them all lines about how theyre special and u

> want to date them and theyre so sexy or whatever.....do u like

every

> girl that talks to u?...i think id call that incredibly

desparate.

> find a girl and get to know her before u start falling for

her....i

> wanred u over and over not to fall for me, so its your fault if u

> got hurt...i also have to wonder , how can i genuinly be YOUR

friend

> when u feed all these girls the same lines, and we have not a damn

> thing in common? think about it. its a fake friendship and that

is

> the reason why. you talk to us cuz we are youre last resort and

> your bored so u have nothing better to do. how do u think it

feels

> to have you message me saying " Im bored " --well gee, im glad u

> chose me to entertain you, how lucky i feel......we have nothing

in

> common cody, dont u get it....i am trying to live a full life,

> trying to do things, but all i can do is tell u about it because u

> dont want to do that. i think u are a good hearted person cody,

and

> im sure u hate my guts right now for what ive said, but youre an

> adult and we cant all keep protecting you from reality. the truth

> and reality hurts sometimes, but maybe it will change things.

> lauren

>

>

>

>

>

[Guest guest]

BEING ON A VENTILATOR IS EASY!!!! WANT TO BE ON ONE?

> In a message dated 8/21/02 10:51:25 PM Eastern Daylight Time,

> turbokev@i... writes:

>

>

> > u need educated

> >

>

> none of dis has shit to do w/ u. is speaking the

truth, get

> over it!

> ~s, GRADUATE of Class 2002~

>

> " Challenges are what make life interesting; overcoming them is

what makes l

> ife meaningful. "

> - J. Marine

>

>

>

>

>

>

>

>

>

[Guest guest]

I have to admit everything said about Cody was TOTALLY TRUE. He

once was " in love " with me also. But the next day I was a bitch, snob,

stupid. Etc. Cody, dude, stop being verbally abusive when things don't

go your way. Life is life, fight your own battles, don't make do

your dirty work. You need to get some " balls " .

[Guest guest]

I don't really know cody so I can't judge him but I don't think the

letter was saying she thinks being disabled and on vent is easy. But

that everyone should try to do something with their life go to

college even if one class a year, take an online class, volunteer,

get hobbies, work part time...write a book, design websites anything!

It makes you feel better and makes you more interesting as a person.

Sometimes you need to try what you think you cant to learn you can...

[Guest guest]

exactly my point becky!!! i dont know how it appearedi was bashing

disabled/vent users--umm helllooo--im disabled and may use a vent

someday!!!--why would i do that? but that what happens when people dont know

the whole story before getting into somebody's private business...

lauren

e_sma wrote:I don't really know cody so I can't judge him but I don't think the

letter was saying she thinks being disabled and on vent is easy. But

that everyone should try to do something with their life go to

college even if one class a year, take an online class, volunteer,

get hobbies, work part time...write a book, design websites anything!

It makes you feel better and makes you more interesting as a person.

Sometimes you need to try what you think you cant to learn you can...

[Guest guest]

On 22 Aug 2002 at 3:00, turbokev wrote:

> BEING ON A VENTILATOR IS EASY!!!! WANT TO BE ON ONE?

It's what you make it My life is just as good if not better than

a lot of other disabled and non-disabled people I know. It's

deffo not as bad as doctors and the media make it out to be.

TuftySue - with big news for tomorrow ....

[Guest guest]

big news for tomorrow????

[Guest guest]

big news for tomorrow????

[Guest guest]

is right. Posting a private email to a public list is poor form. It

violates the privacy of the original sender, and (on some lists) is unlawful

due to copywrite regulations. Watch what you guys forward.

Vicki

[Guest guest]

Jen,

I think that's a great way to deal with a slip-up, not beating

yourself up and turning it into a free day. Usually, you would want

to take more than two days in between your free days, but it's better

to take the free day on Wed than to turn Wed into a self-sabotaging

binge day. It'll even out anyway, since now your plan should be not

to take a free day until next Sunday.

[Guest guest]

Jen, welcome to this group. Here's my take on your situation. I don't see how

people change their free day around. I guess they are disciplined enough come

Sunday to not take another free day. However, this program is " for life " so you

have to make it work in your lifestyle. They say if you eat clean 90 % of the

time (overall average) you will be successful. For me, I can *only* have free

day on Sundays because if I took one on a Wednesday then I would feel I would

have to wait until Wednesday next to have another free day. I am a bit

obsessive that way, but it has been working with my lifestyle for 9 months now

and I' ve dropped 72 lbs, so I am not complaining! Bottom line is to know that

if you take an unscheduled free day you need to eat clean for 6 days.

Park

(who is on a week off between C3 and C4)

Hello

Good Morning!! I am new to this web site. I am

currently doing BFL, I'm C1W4D4. I have been sticking

to the plan by the book, with free day on Sunday.

Last night however I was craving my chocolate chip

cookies and had a few along with a small pizza. I

decided not to get down on myself as I usually do and

to call Wednesday my free day for this week. Is it

okay to change free days or have them so close

together?

Thanks for any insight and I look forward to meeting

all of you on this sight.

-Jen

__________________________________________________

[Guest guest]

Park,

I am the EXACT same way, I cannot switch my free day all around it

screws me up completely. I have switched it from Saturday to Sunday

a couple of times and it just completely threw me off, I HATED it. I

am very structered in the sense of having to have everything the same

way all the time, I understand where you are coming from on this one.

IF something comes up during the week I just either take my food or

eat BFL where ever I am at.

> Jen, welcome to this group. Here's my take on your situation. I

don't see how people change their free day around. I guess they are

disciplined enough come Sunday to not take another free day.

However, this program is " for life " so you have to make it work in

your lifestyle. They say if you eat clean 90 % of the time (overall

average) you will be successful. For me, I can *only* have free day

on Sundays because if I took one on a Wednesday then I would feel I

would have to wait until Wednesday next to have another free day. I

am a bit obsessive that way, but it has been working with my

lifestyle for 9 months now and I' ve dropped 72 lbs, so I am not

complaining! Bottom line is to know that if you take an unscheduled

free day you need to eat clean for 6 days.

> Park

> (who is on a week off between C3 and C4)

> Hello

>

>

> Good Morning!! I am new to this web site. I am

> currently doing BFL, I'm C1W4D4. I have been sticking

> to the plan by the book, with free day on Sunday.

> Last night however I was craving my chocolate chip

> cookies and had a few along with a small pizza. I

> decided not to get down on myself as I usually do and

> to call Wednesday my free day for this week. Is it

> okay to change free days or have them so close

> together?

> Thanks for any insight and I look forward to meeting

> all of you on this sight.

> -Jen

>

>

> __________________________________________________

>

[Guest guest]

THat is the plan!! Thanks so much for the

encouragement.

-Jen

--- run_girl_la <no_reply > wrote:

> Jen,

>

> I think that's a great way to deal with a slip-up,

> not beating

> yourself up and turning it into a free day.

> Usually, you would want

> to take more than two days in between your free

> days, but it's better

> to take the free day on Wed than to turn Wed into a

> self-sabotaging

> binge day. It'll even out anyway, since now your

> plan should be not

> to take a free day until next Sunday.

>

>

>

>

__________________________________________________

[Guest guest]

Yea Tuft! what¹s the big news??????????????

On 8/22/02 4:10 PM, " Tufty " <sv014e6391@...> wrote:

> On 22 Aug 2002 at 3:00, turbokev wrote:

>

>> > BEING ON A VENTILATOR IS EASY!!!! WANT TO BE ON ONE?

>

> It's what you make it My life is just as good if not better than

> a lot of other disabled and non-disabled people I know. It's

> deffo not as bad as doctors and the media make it out to be.

>

> TuftySue - with big news for tomorrow ....

>

>

[Guest guest]

Dear Group,

I want to give my sincere apology for doing something so juvenile,

disrespectful, and stupid as broadcasting two people's personal

discussion. It was totally uncalled for and I am extremely sorry

for causing this disturbance. I went to bed last nite and cried

because it is unlike me to act like I did. I misunderstood your

point and I only knew a small portion of it. I have been on a

ventilator for 13 years so I have a tendecy to be combative when I

think someone is putting down ventilator life because I think I lead

a normal and productive life. Sometimes I do more then abled bodied

people. I get 16 hours of nursing per day, I am a senior in college

and I will graduate in 3+ years. I am in a serious relationship

with someone I have known for 17 years and we plan to marry

eventually. Life for all of us isn't always easy but we make it

tough if we don't attempt to live.

Sorry again,

>

> > BEING ON A VENTILATOR IS EASY!!!! WANT TO BE ON ONE?

>

> It's what you make it My life is just as good if not better

than

> a lot of other disabled and non-disabled people I know. It's

> deffo not as bad as doctors and the media make it out to be.

>

> TuftySue - with big news for tomorrow ....

[Guest guest]

Jen,

Welcome!! As far as free days, I " try " to stay on schedule because I

know how tempting my weekends are...however, that being said, last

night half a box of milk duds popped into my mouth before I realized

what I was doing..so I called it my free day anyway. I find overall I

do better with a scheduled free day or I tend to take advantage of it

and have a hard time sticking to plan on my " normally scheduled free

day " .

Colleen

> Good Morning!! I am new to this web site. I am

> currently doing BFL, I'm C1W4D4. I have been sticking

> to the plan by the book, with free day on Sunday.

> Last night however I was craving my chocolate chip

> cookies and had a few along with a small pizza. I

> decided not to get down on myself as I usually do and

> to call Wednesday my free day for this week. Is it

> okay to change free days or have them so close

> together?

> Thanks for any insight and I look forward to meeting

> all of you on this sight.

> -Jen

>

>

> __________________________________________________

>

[Guest guest]

Ursula & Beth,

Thanks for the information!! As for the meds, we only need to use

Albuterol in it, for emergencies. The Pulmicort can be used at home, but

it's good to know in case we EVER go on a trip again!!! I'm hoping we do!

Sandi

[Guest guest]

Sandi,

I have researched the web fairly thoroughly for nebulizers & here are some

of the sites that I found very useful. I was in the market for an ultrasonic

nebulizer but most of these sites have both kinds. Also, The Holly Tree site

is an organization that provides mainly durable medical equipment for kids

with special needs. They provided a top of the line portable ultrasonic

nebulizer that sells for $400 for a friend of mine's son for FREE! I am

planning to contact them myself but have not done so yet. Hope at least some

of this is helpful to you! Please give hug from us. Good Luck!

<www.nebulizer-online-store.com>

<www.nebulizers-to-oximeters.com>

<www.ultrasonicmedicationnebulizers.com>

The Holly Tree<www.homestead.com/TheHollyTreeInc./Home.html>

Beth, Mom to Wade,15 (CVID,etc.)

>From: SassyKay418@...

>Reply-

>

>Subject: Hello

>Date: Tue, 27 Aug 2002 11:45:14 EDT

>

>Hi Group,

> Does anyone have any experience with Portable Nebulizers? I need to be

>able to leave my house without worrying!!! And I will loose my mind if

>it's

>not soon. I have been able to locate one, but it's difficult to get my

>hands

>on. Any name brands or ideas of how to get one? I have called the

>Allergist's office, of course, I will have to fight 's insurance

>AGAIN.

>His Ped is a two hour round trip, and they know this, so I believe it is

>justified.

>

>

>Sandi--Mom to , age 9. Suspected IgA def., Tetrology of Fallot,

>chronic sinusitis, chronic ear infections, asthma, severe allergies, GERD.

>Ten surgeries, heart surgery pending.

>

>

>

[Guest guest]

Macey has a Duraneb 2000. It's blue and portable and even has a small area in

the front for tubing and medicine.

Insurance paid for it. Macey's doctor wrote a letter detailing her needs (I can

try and find it for you to have as an

example). Regarding ultrasonic nebs remember some meds are not supposed to be

used with these, Pulmicort comes to mind.

Something about how the ultrasonic does things with the med particles.

Ursula Holleman

Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

[Guest guest]

> Hi Group,

> Does anyone have any experience with Portable Nebulizers? I need

to be

> able to leave my house without worrying!!! And I will loose my

mind if it's

> not soon. I have been able to locate one, but it's difficult to

get my hands

> on. Any name brands or ideas of how to get one? I have called the

> Allergist's office, of course, I will have to fight 's

insurance AGAIN.

> His Ped is a two hour round trip, and they know this, so I believe

it is

> justified.

Sandi--Mom to , age 9.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Hi:

Blake was just approved for a new state of the art Nebulizer. You

can NOT get any more portable that this one is. There is no

compressor, no tubing. It runs of regular electricity,the car

lighter, or 4 aa batteries. The batteries are good for up to 10 10

min treatments. Blake has had this onw for about 1 month now. He

loves it and it is very convient. The clincher----- it makes NO

NOISE.

The insurance and Medicaid Co. both agree to go together and let us

have this. Blake is the 1st one to get this Nebulizer in SC.

It is called AERONEB. It comes with 4 batteries, a lighter adapter

and an adapter to plug in the wall. A carrying case and a Video to

show you how to work it. It is a bit costly. I had to make sure

that it was fully covered before it was ordered. Blake's

Pulmonologist was the one who laid all the paper work down and got

the ball rolling. She called all involved in getting this Neb. which

was on a Monday and on Thursday we were putting it to full use.

THis thing is soooooo quiet that we had to check and see that he

really was doing a treatment. It can be used with a mouth piece and

a face mask. The particles are delivered way smaller than an average

nebulizer(that is one reason it was ordered for us). Blake is so

proud of this machine that every 4 hrs. is nothing to him anymore

(that is how often he has to do treatments). You can use the

Pulmicort and albuterol in it. Blake does his pulmicort with

Xopenex . But this past week his Pulmo. started him on a new med

called DUONEB. This is Atrovent and Albuterol mixed together just a

lot LESS volume and less sitting time to get it done. He seems to

tolerate this much better(for now).

Well need to go. Hope this helps as far as Nebulizers go. You can

look on the 'net for it. Just type in AERONEB or go to aerogen.com

it will give the info too.

, Mom to Blake

[Guest guest]

Hi Sandi, I have a portable nebulizer. There is a very portable one and a not

so portable one. Ours was about $200.00 and the other one is over $500.00. I

like the portablility of ours but I am not sure it will last that long. Our

insurance paid !/2 of ours. Ours is an OMRON it is rechargable battery, car

plug or a/c adapter. It is small and very easy to use. We have used it when

we go about 2 hours away and the nice thing is that I do not worry anymore.

If you get it ask for an extra med kit. You may want to check in with a

Respiratory supplyor O2 company and then compare it to the internet. The

Second one is the heavy not so portable Devilbiss I think that is how you

spell it. It has a compressor like the regular ones but also a battery pack.

Hope this helps. BARBIE

[Guest guest]

Ursula,

This is and I was wondering if you could send the info on

Dr.Meyers again. I deleted by accident. Do you think I should send their

records now. Our appointment is September 17, 2000.

Ursula Holleman wrote:Macey has a Duraneb 2000. It's blue and portable and

even has a small area in the front for tubing and medicine.

Insurance paid for it. Macey's doctor wrote a letter detailing her needs (I can

try and find it for you to have as an

example). Regarding ultrasonic nebs remember some meds are not supposed to be

used with these, Pulmicort comes to mind.

Something about how the ultrasonic does things with the med particles.

Ursula Holleman

Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

[Guest guest]

Katrina Hello and Welcome!

I am Louise and I have Stills also, I am 53 years old, and have had it

for at least 18 years. My heart goes out to you and Gladys and her

family. Many of the things you wrote are SO familiar to us. I am very

tired tonight but I hope I can think straight enough to get this message

off to you. These sites are very very good, you have probably already

been to both of them, but just in case:

http://www.stillsdisease.org/new_page_2.htm

http://www.stillsdisease.org/

It would help your Mother in law enormously if you could help and

encourage her to join our support group, even if she has to borrow a

computer or use a friends or one at the library. I learned more here

than anywhere else, the friendship and encouragement, and care just

CAN'T be beat! I don't know what I would do with out the support of

these wonderful Stilligans!!!

Even the doctors, researchers and professional experts can't answer the

question " what causes Stills? " But...'s theory and your

observation holds a lot of sense for some of us who have had similar

experiences to Gladys'. Be sure to order a few pamphlets that are

offered on our site, they are free and very helpful for people who would

like to know a little about Stills. Hope to be hearing from you and

Gladys soon, Louise.

Katrina wrote:

>

> Hi, My name is Katrina. My Mother-n-Law, Gladys has Stills disease. I have

alot of questions about Still's. Mammie is 54 and was dig. with Still's 1 year

ago. We thought it was from chemical poisoning. She worked at a saw mill for 9

years and uncovered some lumber and the chemicals and steam hit her in the face

a week after that she got sick.

> Doctors have ran every test and said that they done a prosses of elimination.

And said she has Still's. Her symptoms are alot like the ones I've read. She has

very high fevers, She has lost 58lbs and can't gain a pound back. She eats good

and drinks ensure plus but doesn't gain a pound. She weights 99lbs now. She gets

a rash and it turns brown, like a sun burn. It itches and comes up unexpectly.

> She has no energy. It takes alot for her to even get out of bed or a chair.

She looses blood and cant reproduce it. Doctors have done every test possible

but can't figure out where her blood is going. She gets blood once a month.

> She is taking prednisone 40mg. That is it besides seizure meds. Mammie was

the kind of person who wouldn't even miss work if she had phneumonia, believe me

she loved her job. Now she sits in her house all the time. How can we help her.

Mammie doesn't complain about being sick, she never has. But she seems depressed

and we don't know what to do to make her feel better. She can't get out like she

use to and do the things she injoyed like fishing and Atv riding. Taking her to

the store wears her out. What can we do for her? Any ideas would really help.

> Thank You for listening. Katrina Kentucky

>

>