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I forgot cipro! You may have just saved my life, N! Thanks.

On Nov 2, 2008, at 5:06 PM, wrote:

> Have you tried cipro amy? Really even though they say it’s the same as

> levequin the side effects are not the same at all...

>

> On 11/2/08 3:57 PM, " Amy " <blueyedaze@...> wrote:

>

> > What does Actifed do? I'm not on an antibiotic because I'm

> allergic to

> > augmentin, zitromax, erythmyicin, augmentin, and the bad levaquin

> > experience. =(

> >

> > On Nov 2, 2008, at 4:36 PM, Lori wrote:

> >

> >> > Mucinex didn't really help me either. I've still been taking

> about

> >> > two (old formula) Actifed a day and suctioning only small

> amounts of

> >> > fluid. I have vacation days all this week so I am hoping I will

> be

> >> > all better by the time I go back to work on the 10th.

> >> >

> >> > I hope you feel better very soon! Did you start on antibiotics

> yet?

> >> >

> >> > Lori

> >> > Sent from my Verizon BlackBerry

> >> >

> >> > cough medicine

> >>>> > > >

> >>>>> > > > >

> >>>> > > >

> >>>>> > > > > How much do you guys take? I'm using just the

> expectorant that

> >>>> > > > starts

> >>>> > > >

> >>>>> > > > >

> >>>> > > >

> >>>>> > > > > with G as the active ingredient. I took two tsp at

> 9:15 and I'm

> >>>> > > > still

> >>>> > > >

> >>>>> > > > >

> >>>> > > >

> >>>>> > > > > struggling. We've tried all my coughing techniques and

> nothing's

> >>>> > > >

> >>>>> > > > >

> >>>> > > >

> >>>>> > > > > helping. I have a cough assist, but have no experience

> using it.

> >>>> > > >

> >>>>> > > > >

> >>>> > > >

> >>>>> > > > > Trying hard not to freak out...

> >>>> > > >

> >>>>> > > > >

> >>>> > > >

> >>>>> > > > >

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Dries me up. Helps to some extent.

I seem to aspirate more after a lung infection. The fluid in my lung now is all

from aspiration. I'll swallow and in the next minute my lung is rattling again.

The only thing I can think is that my swallowing muscles weaken when I'm sick

and than take awhile to strengthen back up.

Anyone experience this?

Sent from my Verizon BlackBerry

cough medicine

> > >

> > > >

> > >

> > > > How much do you guys take? I'm using just the expectorant that

> > > starts

> > >

> > > >

> > >

> > > > with G as the active ingredient. I took two tsp at 9:15 and I'm

> > > still

> > >

> > > >

> > >

> > > > struggling. We've tried all my coughing techniques and nothing's

> > >

> > > >

> > >

> > > > helping. I have a cough assist, but have no experience using it.

> > >

> > > >

> > >

> > > > Trying hard not to freak out...

> > >

> > > >

> > >

> > > >

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I have experienced that, but thank gods, not this time. I can't take

anything to dry this up more- it's so damn dry and I'm pounding the

fluids. Looks like I'm gonna be doing the nebs every four hours, at

least tonight.æ

On Nov 2, 2008, at 5:20 PM, Lori wrote:

> Dries me up. Helps to some extent.

>

> I seem to aspirate more after a lung infection. The fluid in my lung

> now is all from aspiration. I'll swallow and in the next minute my

> lung is rattling again. The only thing I can think is that my

> swallowing muscles weaken when I'm sick and than take awhile to

> strengthen back up.

>

> Anyone experience this?

>

> Sent from my Verizon BlackBerry

>

> cough medicine

> > > >

> > > > >

> > > >

> > > > > How much do you guys take? I'm using just the expectorant that

> > > > starts

> > > >

> > > > >

> > > >

> > > > > with G as the active ingredient. I took two tsp at 9:15 and

> I'm

> > > > still

> > > >

> > > > >

> > > >

> > > > > struggling. We've tried all my coughing techniques and

> nothing's

> > > >

> > > > >

> > > >

> > > > > helping. I have a cough assist, but have no experience using

> it.

> > > >

> > > > >

> > > >

> > > > > Trying hard not to freak out...

> > > >

> > > > >

> > > >

> > > > >

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Yes, it's saved me many times (including this current infection-now resolving). 

My doctor gives muey an emergency prescription to let me use at my own

discretion as I need to start it right away.  After you have recovered from

this, maybe you can ask your doctor about doing the same.

________________________________

From: Amy <blueyedaze@...>

Sent: Sunday, November 2, 2008 4:10:31 PM

Subject: Re: cough medicine

I forgot cipro! You may have just saved my life, N! Thanks.

On Nov 2, 2008, at 5:06 PM, wrote:

> Have you tried cipro amy? Really even though they say it¢s the same as

> levequin the side effects are not the same at all...

>

> On 11/2/08 3:57 PM, " Amy " <blueyedaze@...> wrote:

>

> > What does Actifed do? I'm not on an antibiotic because I'm 

> allergic to

> > augmentin, zitromax, erythmyicin, augmentin, and the bad levaquin

> > experience. =(

> >

> > On Nov 2, 2008, at 4:36 PM, Lori wrote:

> >

> >> > Mucinex didn't really help me either. I've still been taking 

> about

> >> > two (old formula) Actifed a day and suctioning only small 

> amounts of

> >> > fluid. I have vacation days all this week so I am hoping I will 

> be

> >> > all better by the time I go back to work on the 10th.

> >> >

> >> > I hope you feel better very soon! Did you start on antibiotics 

> yet?

> >> >

> >> > Lori

> >> > Sent from my Verizon BlackBerry

> >> >

> >> > cough medicine

> >>>> > > >

> >>>>> > > > >

> >>>> > > >

> >>>>> > > > > How much do you guys take? I'm using just the 

> expectorant that

> >>>> > > > starts

> >>>> > > >

> >>>>> > > > >

> >>>> > > >

> >>>>> > > > > with G as the active ingredient. I took two tsp at 

> 9:15 and I'm

> >>>> > > > still

> >>>> > > >

> >>>>> > > > >

> >>>> > > >

> >>>>> > > > > struggling. We've tried all my coughing techniques and 

> nothing's

> >>>> > > >

> >>>>> > > > >

> >>>> > > >

> >>>>> > > > > helping. I have a cough assist, but have no experience 

> using it.

> >>>> > > >

> >>>>> > > > >

> >>>> > > >

> >>>>> > > > > Trying hard not to freak out...

> >>>> > > >

> >>>>> > > > >

> >>>> > > >

> >>>>> > > > >

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Yes, thank you! I definitely will.

On Nov 2, 2008, at 5:26 PM, Lori G wrote:

> Yes, it's saved me many times (including this current infection-now

> resolving). My doctor gives muey an emergency prescription to let

> me use at my own discretion as I need to start it right away. After

> you have recovered from this, maybe you can ask your doctor about

> doing the same.

>

>

>

>

>

> ________________________________

> From: Amy <blueyedaze@...>

>

> Sent: Sunday, November 2, 2008 4:10:31 PM

> Subject: Re: cough medicine

>

> I forgot cipro! You may have just saved my life, N! Thanks.

>

> On Nov 2, 2008, at 5:06 PM, wrote:

>

>> Have you tried cipro amy? Really even though they say it¢s the same

>> as

>> levequin the side effects are not the same at all...

>>

>> On 11/2/08 3:57 PM, " Amy " <blueyedaze@...> wrote:

>>

>>> What does Actifed do? I'm not on an antibiotic because I'm

>> allergic to

>>> augmentin, zitromax, erythmyicin, augmentin, and the bad levaquin

>>> experience. =(

>>>

>>> On Nov 2, 2008, at 4:36 PM, Lori wrote:

>>>

>>>>> Mucinex didn't really help me either. I've still been taking

>> about

>>>>> two (old formula) Actifed a day and suctioning only small

>> amounts of

>>>>> fluid. I have vacation days all this week so I am hoping I will

>> be

>>>>> all better by the time I go back to work on the 10th.

>>>>>

>>>>> I hope you feel better very soon! Did you start on antibiotics

>> yet?

>>>>>

>>>>> Lori

>>>>> Sent from my Verizon BlackBerry

>>>>>

>>>>> cough medicine

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> How much do you guys take? I'm using just the

>> expectorant that

>>>>>>>>> starts

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> with G as the active ingredient. I took two tsp at

>> 9:15 and I'm

>>>>>>>>> still

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> struggling. We've tried all my coughing techniques and

>> nothing's

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> helping. I have a cough assist, but have no experience

>> using it.

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> Trying hard not to freak out...

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>>

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Oh sure, save a life everyday. ;-) hope you got some and that it helps!

On 11/2/08 4:10 PM, " Amy " <blueyedaze@...> wrote:

> I forgot cipro! You may have just saved my life, N! Thanks.

>

> On Nov 2, 2008, at 5:06 PM, wrote:

>

>> Have you tried cipro amy? Really even though they say it’s the same as

>> levequin the side effects are not the same at all...

>>

>> On 11/2/08 3:57 PM, " Amy " <blueyedaze@...> wrote:

>>

>>> What does Actifed do? I'm not on an antibiotic because I'm

>> allergic to

>>> augmentin, zitromax, erythmyicin, augmentin, and the bad levaquin

>>> experience. =(

>>>

>>> On Nov 2, 2008, at 4:36 PM, Lori wrote:

>>>

>>>>> Mucinex didn't really help me either. I've still been taking

>> about

>>>>> two (old formula) Actifed a day and suctioning only small

>> amounts of

>>>>> fluid. I have vacation days all this week so I am hoping I will

>> be

>>>>> all better by the time I go back to work on the 10th.

>>>>>

>>>>> I hope you feel better very soon! Did you start on antibiotics

>> yet?

>>>>>

>>>>> Lori

>>>>> Sent from my Verizon BlackBerry

>>>>>

>>>>> cough medicine

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> How much do you guys take? I'm using just the

>> expectorant that

>>>>>>>>> starts

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> with G as the active ingredient. I took two tsp at

>> 9:15 and I'm

>>>>>>>>> still

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> struggling. We've tried all my coughing techniques and

>> nothing's

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> helping. I have a cough assist, but have no experience

>> using it.

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> Trying hard not to freak out...

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>>

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My dr won;t do that and it's really frustrating to me since it isn't always

a helpful dr on call and it's not like I can " wait until Monday " . I

actually plan to switch drs because it pisses me off! speaking of that, I

have been trying to find a new dr but it is freaking impossible to find one

that has ever even heard of sma. Pretty scary. Does anyone know if there is

any sort of list somewhere of drs that know about sma? I feel like the best

I can do is find a dr who will cooperate and do what I say but really I am

just having to be my own dr.

On 11/2/08 4:26 PM, " Lori G " <lorig713@...> wrote:

> Yes, it's saved me many times (including this current infection-now

> resolving).  My doctor gives muey an emergency prescription to let me use at

> my own discretion as I need to start it right away.  After you have recovered

> from this, maybe you can ask your doctor about doing the same.

>

>

>

>

>

> ________________________________

> From: Amy <blueyedaze@...>

>

> Sent: Sunday, November 2, 2008 4:10:31 PM

> Subject: Re: cough medicine

>

> I forgot cipro! You may have just saved my life, N! Thanks.

>

> On Nov 2, 2008, at 5:06 PM, wrote:

>

>> Have you tried cipro amy? Really even though they say it¢s the same as

>> levequin the side effects are not the same at all...

>>

>> On 11/2/08 3:57 PM, " Amy " <blueyedaze@...> wrote:

>>

>>> What does Actifed do? I'm not on an antibiotic because I'm 

>> allergic to

>>> augmentin, zitromax, erythmyicin, augmentin, and the bad levaquin

>>> experience. =(

>>>

>>> On Nov 2, 2008, at 4:36 PM, Lori wrote:

>>>

>>>>> Mucinex didn't really help me either. I've still been taking 

>> about

>>>>> two (old formula) Actifed a day and suctioning only small 

>> amounts of

>>>>> fluid. I have vacation days all this week so I am hoping I will 

>> be

>>>>> all better by the time I go back to work on the 10th.

>>>>>

>>>>> I hope you feel better very soon! Did you start on antibiotics 

>> yet?

>>>>>

>>>>> Lori

>>>>> Sent from my Verizon BlackBerry

>>>>>

>>>>> cough medicine

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> How much do you guys take? I'm using just the 

>> expectorant that

>>>>>>>>> starts

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> with G as the active ingredient. I took two tsp at 

>> 9:15 and I'm

>>>>>>>>> still

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> struggling. We've tried all my coughing techniques and 

>> nothing's

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> helping. I have a cough assist, but have no experience 

>> using it.

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> Trying hard not to freak out...

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>>

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I am without a GP also. I have know idea how to find someone just to

do the basics. Plus I am really TERRIBLE at explaining sma so someone

who already knows would be lovely. Any ideas??

It scares me how much everyone here knows about lung health

etc.......... It kinda seems like everyone is their own dr. I did not

attend med school.

Suzanne

On Nov 3, 2008, at 12:00 AM, wrote:

> My dr won;t do that and it's really frustrating to me since it isn't

> always

> a helpful dr on call and it's not like I can " wait until Monday " . I

> actually plan to switch drs because it pisses me off! speaking of

> that, I

> have been trying to find a new dr but it is freaking impossible to

> find one

> that has ever even heard of sma. Pretty scary. Does anyone know if

> there is

> any sort of list somewhere of drs that know about sma? I feel like

> the best

> I can do is find a dr who will cooperate and do what I say but

> really I am

> just having to be my own dr.

>

> On 11/2/08 4:26 PM, " Lori G " <lorig713@...> wrote:

>

> > Yes, it's saved me many times (including this current infection-now

> > resolving). My doctor gives muey an emergency prescription to let

> me use at

> > my own discretion as I need to start it right away. After you

> have recovered

> > from this, maybe you can ask your doctor about doing the same.

> >

> >

> >

> >

> >

> > ________________________________

> > From: Amy <blueyedaze@...>

> >

> > Sent: Sunday, November 2, 2008 4:10:31 PM

> > Subject: Re: cough medicine

> >

> > I forgot cipro! You may have just saved my life, N! Thanks.

> >

> > On Nov 2, 2008, at 5:06 PM, wrote:

> >

> >> Have you tried cipro amy? Really even though they say it¢s the

> same as

> >> levequin the side effects are not the same at all...

> >>

> >> On 11/2/08 3:57 PM, " Amy " <blueyedaze@...> wrote:

> >>

> >>> What does Actifed do? I'm not on an antibiotic because I'm

> >> allergic to

> >>> augmentin, zitromax, erythmyicin, augmentin, and the bad levaquin

> >>> experience. =(

> >>>

> >>> On Nov 2, 2008, at 4:36 PM, Lori wrote:

> >>>

> >>>>> Mucinex didn't really help me either. I've still been taking

> >> about

> >>>>> two (old formula) Actifed a day and suctioning only small

> >> amounts of

> >>>>> fluid. I have vacation days all this week so I am hoping I will

> >> be

> >>>>> all better by the time I go back to work on the 10th.

> >>>>>

> >>>>> I hope you feel better very soon! Did you start on antibiotics

> >> yet?

> >>>>>

> >>>>> Lori

> >>>>> Sent from my Verizon BlackBerry

> >>>>>

> >>>>> cough medicine

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>> How much do you guys take? I'm using just the

> >> expectorant that

> >>>>>>>>> starts

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>> with G as the active ingredient. I took two tsp at

> >> 9:15 and I'm

> >>>>>>>>> still

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>> struggling. We've tried all my coughing techniques and

> >> nothing's

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>> helping. I have a cough assist, but have no experience

> >> using it.

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>> Trying hard not to freak out...

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>>

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,

I know there is a dad of a girl with SMA 1 who keeps an ongoing list of

SMAers and the Drs they see and recommend. Not sure there are many adults on

the

list tho. He categorizes them by state. I might have one of the copies he

sent. Would you like me to find it and send it to you?

Kimi

}i{ Visit my myspace page and blogs: _www.myspace.com/ksmile96_

(http://www.myspace.com/ksmile96) }i{

" I'm falling apart. I'm barely breathing. With a broken heart, that's still

beating. In the pain, there is healing. In your name, I find meaning. So

I'm holding on, I'm holding on, I'm holding on. I'm barely holding on to

you...and I still see your reflection inside my eyes, that are looking for a

purpose. They're still looking for life.... " - Lifehouse

In a message dated 11/3/2008 12:01:28 A.M. Eastern Standard Time,

nicoleroberts@... writes:

My dr won;t do that and it's really frustrating to me since it isn't always

a helpful dr on call and it's not like I can " wait until Monday " . I

actually plan to switch drs because it pisses me off! speaking of that, I

have been trying to find a new dr but it is freaking impossible to find one

that has ever even heard of sma. Pretty scary. Does anyone know if there is

any sort of list somewhere of drs that know about sma? I feel like the best

I can do is find a dr who will cooperate and do what I say but really I am

just having to be my own dr.

On 11/2/08 4:26 PM, " Lori G " <_lorig713@..._

(mailto:lorig713@...) > wrote:

> Yes, it's saved me many times (including this current infection-now

> resolving). My doctor gives muey an emergency prescription to let me use

at

> my own discretion as I need to start it right away. After you have

recovered

> from this, maybe you can ask your doctor about doing the same.

>

>

>

>

>

> ____________ ________ ________ _

> From: Amy <_blueyedaze@..._ (mailto:blueyedaze@...) >

> _@groSMAfrie_ (mailto: )

> Sent: Sunday, November 2, 2008 4:10:31 PM

> Subject: Re: cough medicine

>

> I forgot cipro! You may have just saved my life, N! Thanks.

>

> On Nov 2, 2008, at 5:06 PM, wrote:

>

>> Have you tried cipro amy? Really even though they say it¢s the same as

>> levequin the side effects are not the same at all...

>>

>> On 11/2/08 3:57 PM, " Amy " <_blueyedaze@..._

(mailto:blueyedaze@...) > wrote:

>>

>>> What does Actifed do? I'm not on an antibiotic because I'm

>> allergic to

>>> augmentin, zitromax, erythmyicin, augmentin, and the bad levaquin

>>> experience. =(

>>>

>>> On Nov 2, 2008, at 4:36 PM, Lori wrote:

>>>

>>>>> Mucinex didn't really help me either. I've still been taking

>> about

>>>>> two (old formula) Actifed a day and suctioning only small

>> amounts of

>>>>> fluid. I have vacation days all this week so I am hoping I will

>> be

>>>>> all better by the time I go back to work on the 10th.

>>>>>

>>>>> I hope you feel better very soon! Did you start on antibiotics

>> yet?

>>>>>

>>>>> Lori

>>>>> Sent from my Verizon BlackBerry

>>>>>

>>>>> -----Original Message-----

>>>>> From: Amy <_blueyedaze@..._ (mailto:blueyedaze@...)

<mailto:blueyedaze%mailto:bl> >

>>>>>

>>>>> Date: Sun, 2 Nov 2008 14:57:12

>>>>> <_@groSMAfrie_ (mailto: )

<mailto:%mailto:SMAfriemai

>>>>

>>>>> Subject: Re: cough medicine

>>>>>

>>>>>

>>>>> Thanks! This mucinex isn't doing crap. I'm open to anything.

>>>>>

>>>>>

>>>>> On Nov 2, 2008, at 12:07 PM, Amy M. Marquez wrote:

>>>>>

>>>>>>> Amy,

>>>>>>>

>>>>>>> When I was younger and didn't have access to nebs, cough

>> machines,

>>>>>>> percussors, etc. (my parents were not open to many medical

>>>>>>> advancements throughout our growing years), we would resort

>> to more

>>>>>>> simple techniques as a means to loosen up lung gunk during

>> times of

>>>>>>> illness. It might be worth the try...

>>>>>>>

>>>>>>> Go into the bathroom, shut the door, and draw the shower

>> curtain

>>>>>>> closed. Turn on the bath tub faucet and the shower head full

>> blast

>>>>>>> as hot as the water will go. Within a few minutes, the water

>> will

>>>>>>> steam and the bathroom will eventually fill with steam. Stay

>> in the

>>>>>>> bathroom for 20-30 minutes, breathing as deep as you can,

>> allowing

>>>>>>> the steam into your lungs, thereby breaking/loosening the

>> gunk up.

>>>>>>> Stay tuned to your body so you don't overdo it; the heat and

>> steam

>>>>>>> could leave you light-headed sometimes. The steaming process

>> should

>>>>>>> be done 2-4 times a day, depending on your need and

>> capability. It

>>>>>>> may take a few tries before you feel a difference, but it

>> does work

>>>>>>> pretty well...

>>>>>>>

>>>>>>> Another home remedy we used, though it is not for everyone,

>> is to

>>>>>>> add a tablespoon of apple cider vinegar and a tablespoon of

>> honey to

>>>>>>> an 8-ounce glass of water. Stir it really well and drink it.

>> The

>>>>>>> acid from the vinegar will actually help to break up the gunk,

>>>>>>> allowing it to be coughed up pretty easily. The taste isn't

>> too bad,

>>>>>>> as it resembles strong apple juice. (My dad used to drink the

>>>>>>> mixture minus the honey, but it's disgusting and not

>> something I'd

>>>>>>> recommend... recommend...<WBR>though to use it as a gargle

>> works

>>>>>>> wonders).

>>>>>>>

>>>>>>> I hope you feel better soon...

>>>>>>>

>>>>>>>

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> keep trying with the cough assist. try turning up the

>> settings

>>>>>>>>>

>>>>>>>>>>> little by little until you feel uncomfortable.

>>>>>>>>>

>>>>>>>>>>> thats wat i did wen i was flemy

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> Jade :)

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> -----Original Message-----

>>>>>>>>>

>>>>>>>>>>> From: Amy <blueyedaze@blueyeda>

>>>>>>>>>

>>>>>>>>>>> @gro ups.com

>>>>>>>>>

>>>>>>>>>>> Sent: Sat, 1 Nov 2008 7:45 pm

>>>>>>>>>

>>>>>>>>>>> Subject: cough medicine

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> How much do you guys take? I'm using just the

>> expectorant that

>>>>>>>>> starts

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> with G as the active ingredient. I took two tsp at

>> 9:15 and I'm

>>>>>>>>> still

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> struggling. We've tried all my coughing techniques and

>> nothing's

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> helping. I have a cough assist, but have no experience

>> using it.

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> Trying hard not to freak out...

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> [Non-text portions of this message have been removed]

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>> [Non-text portions of this message have been removed]

>>>>>>>>>

>>>>>>>>> [Non-text portions of this message have been removed]

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>

>>>>>>> [Non-text portions of this message have been removed]

>>>>>>>

>>>>>>> [Non-text portions of this message have been removed]

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

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I now keep an ongoing list of any changes in my health and summaries of all

my Dr appts and bring the last few months with me to all my appts. This list

also has all my diagnoses , DOB, allergies, etc.

Kimi

}i{ Visit my myspace page and blogs: _www.myspace.com/ksmile96_

(http://www.myspace.com/ksmile96) }i{

" I'm falling apart. I'm barely breathing. With a broken heart, that's still

beating. In the pain, there is healing. In your name, I find meaning. So

I'm holding on, I'm holding on, I'm holding on. I'm barely holding on to

you...and I still see your reflection inside my eyes, that are looking for a

purpose. They're still looking for life.... " - Lifehouse

In a message dated 11/3/2008 1:50:38 P.M. Eastern Standard Time,

lorig713@... writes:

Your local hospital may have a physician referral line. You tell them what

type of doctor you are looking for and what type of insurance you have and

they do a search for you.

When I start with a new doctor, I normally bring them some written material

(from the net) about SMA so they will at least have a vague idea of what SMA

is. I am thinking about changing PCPs so I am putting together a written

medical history and list of my current medications to give to the new doctor.

Lori

________________________________

From: Su_Ma_La <_su_la@...__ (mailto:su_la@...) >

_@groSMAfrie_ (mailto: )

Sent: Monday, November 3, 2008 7:52:44 AM

Subject: Re: cough medicine

I am without a GP also. I have know idea how to find someone just to

do the basics. Plus I am really TERRIBLE at explaining sma so someone

who already knows would be lovely. Any ideas??

It scares me how much everyone here knows about lung health

etc......... . It kinda seems like everyone is their own dr. I did not

attend med school.

Suzanne

On Nov 3, 2008, at 12:00 AM, wrote:

> My dr won;t do that and it's really frustrating to me since it isn't

> always

> a helpful dr on call and it's not like I can " wait until Monday " . I

> actually plan to switch drs because it pisses me off! speaking of

> that, I

> have been trying to find a new dr but it is freaking impossible to

> find one

> that has ever even heard of sma. Pretty scary. Does anyone know if

> there is

> any sort of list somewhere of drs that know about sma? I feel like

> the best

> I can do is find a dr who will cooperate and do what I say but

> really I am

> just having to be my own dr.

>

> On 11/2/08 4:26 PM, " Lori G " <lorig713 (DOT) com> wrote:

>

> > Yes, it's saved me many times (including this current infection-now

> > resolving). My doctor gives muey an emergency prescription to let

> me use at

> > my own discretion as I need to start it right away. After you

> have recovered

> > from this, maybe you can ask your doctor about doing the same.

> >

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: Amy <blueyedaze@blueyeda>

> > @gro ups.com

> > Sent: Sunday, November 2, 2008 4:10:31 PM

> > Subject: Re: cough medicine

> >

> > I forgot cipro! You may have just saved my life, N! Thanks.

> >

> > On Nov 2, 2008, at 5:06 PM, wrote:

> >

> >> Have you tried cipro amy? Really even though they say it¢s the

> same as

> >> levequin the side effects are not the same at all...

> >>

> >> On 11/2/08 3:57 PM, " Amy " <blueyedaze@blueyeda> wrote:

> >>

> >>> What does Actifed do? I'm not on an antibiotic because I'm

> >> allergic to

> >>> augmentin, zitromax, erythmyicin, augmentin, and the bad levaquin

> >>> experience. =(

> >>>

> >>> On Nov 2, 2008, at 4:36 PM, Lori wrote:

> >>>

> >>>>> Mucinex didn't really help me either. I've still been taking

> >> about

> >>>>> two (old formula) Actifed a day and suctioning only small

> >> amounts of

> >>>>> fluid. I have vacation days all this week so I am hoping I will

> >> be

> >>>>> all better by the time I go back to work on the 10th.

> >>>>>

> >>>>> I hope you feel better very soon! Did you start on antibiotics

> >> yet?

> >>>>>

> >>>>> Lori

> >>>>> Sent from my Verizon BlackBerry

> >>>>>

> >>>>> -----Original Message-----

> >>>>> From: Amy <blueyedaze@blueyedaze@<W<mailto:blueyedaze% 40aol.com> >

> >>>>>

> >>>>> Date: Sun, 2 Nov 2008 14:57:12

> >>>>> <@@<WBR><mailto:%

40groups. com

> >>>>

> >>>>> Subject: Re: cough medicine

> >>>>>

> >>>>>

> >>>>> Thanks! This mucinex isn't doing crap. I'm open to anything.

> >>>>>

> >>>>>

> >>>>> On Nov 2, 2008, at 12:07 PM, Amy M. Marquez wrote:

> >>>>>

> >>>>>>> Amy,

> >>>>>>>

> >>>>>>> When I was younger and didn't have access to nebs, cough

> >> machines,

> >>>>>>> percussors, etc. (my parents were not open to many medical

> >>>>>>> advancements throughout our growing years), we would resort

> >> to more

> >>>>>>> simple techniques as a means to loosen up lung gunk during

> >> times of

> >>>>>>> illness. It might be worth the try...

> >>>>>>>

> >>>>>>> Go into the bathroom, shut the door, and draw the shower

> >> curtain

> >>>>>>> closed. Turn on the bath tub faucet and the shower head full

> >> blast

> >>>>>>> as hot as the water will go. Within a few minutes, the water

> >> will

> >>>>>>> steam and the bathroom will eventually fill with steam. Stay

> >> in the

> >>>>>>> bathroom for 20-30 minutes, breathing as deep as you can,

> >> allowing

> >>>>>>> the steam into your lungs, thereby breaking/loosening the

> >> gunk up.

> >>>>>>> Stay tuned to your body so you don't overdo it; the heat and

> >> steam

> >>>>>>> could leave you light-headed sometimes. The steaming process

> >> should

> >>>>>>> be done 2-4 times a day, depending on your need and

> >> capability. It

> >>>>>>> may take a few tries before you feel a difference, but it

> >> does work

> >>>>>>> pretty well...

> >>>>>>>

> >>>>>>> Another home remedy we used, though it is not for everyone,

> >> is to

> >>>>>>> add a tablespoon of apple cider vinegar and a tablespoon of

> >> honey to

> >>>>>>> an 8-ounce glass of water. Stir it really well and drink it.

> >> The

> >>>>>>> acid from the vinegar will actually help to break up the gunk,

> >>>>>>> allowing it to be coughed up pretty easily. The taste isn't

> >> too bad,

> >>>>>>> as it resembles strong apple juice. (My dad used to drink the

> >>>>>>> mixture minus the honey, but it's disgusting and not

> >> something I'd

> >>>>>>> recommend... though to use it as a gargle for a sore throat

> >> works

> >>>>>>> wonders).

> >>>>>>>

> >>>>>>> I hope you feel better soon...

> >>>>>>>

> >>>>>>>

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>> keep trying with the cough assist. try turning up the

> >> settings

> >>>>>>>>>

> >>>>>>>>>>> little by little until you feel uncomfortable.

> >>>>>>>>>

> >>>>>>>>>>> thats wat i did wen i was flemy

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>> Jade :)

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>> -----Original Message-----

> >>>>>>>>>

> >>>>>>>>>>> From: Amy <blueyedaze@ aol. com>

> >>>>>>>>>

> >>>>>>>>>>> @gro ups.com

> >>>>>>>>>

> >>>>>>>>>>> Sent: Sat, 1 Nov 2008 7:45 pm

> >>>>>>>>>

> >>>>>>>>>>> Subject: cough medicine

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>> How much do you guys take? I'm using just the

> >> expectorant that

> >>>>>>>>> starts

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>> with G as the active ingredient. I took two tsp at

> >> 9:15 and I'm

> >>>>>>>>> still

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>> struggling. We've tried all my coughing techniques and

> >> nothing's

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>> helping. I have a cough assist, but have no experience

> >> using it.

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>> Trying hard not to freak out...

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>> [Non-text portions of this message have been removed]

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>> [Non-text portions of this message have been removed]

> >>>>>>>>>

> >>>>>>>>> [Non-text portions of this message have been removed]

> >>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>

> >>>>>>>

> >>>>>>> [Non-text portions of this message have been removed]

> >>>>>>>

> >>>>>>> [Non-text portions of this message have been removed]

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

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Guest guest

Yeah that would be great. Thank you!

On 11/4/08 5:04 PM, " Ksmile96@... " <Ksmile96@...> wrote:

> ,

> I know there is a dad of a girl with SMA 1 who keeps an ongoing list of

> SMAers and the Drs they see and recommend. Not sure there are many adults on

> the

> list tho. He categorizes them by state. I might have one of the copies he

> sent. Would you like me to find it and send it to you?

>

>

> Kimi

>

> }i{ Visit my myspace page and blogs: _www.myspace.com/ksmile96_

> (http://www.myspace.com/ksmile96) }i{

>

> " I'm falling apart. I'm barely breathing. With a broken heart, that's still

> beating. In the pain, there is healing. In your name, I find meaning. So

> I'm holding on, I'm holding on, I'm holding on. I'm barely holding on to

> you...and I still see your reflection inside my eyes, that are looking for a

> purpose. They're still looking for life.... " - Lifehouse

>

> In a message dated 11/3/2008 12:01:28 A.M. Eastern Standard Time,

> nicoleroberts@... <mailto:nicoleroberts%40usfamily.net> writes:

>

> My dr won;t do that and it's really frustrating to me since it isn't always

> a helpful dr on call and it's not like I can " wait until Monday " . I

> actually plan to switch drs because it pisses me off! speaking of that, I

> have been trying to find a new dr but it is freaking impossible to find one

> that has ever even heard of sma. Pretty scary. Does anyone know if there is

> any sort of list somewhere of drs that know about sma? I feel like the best

> I can do is find a dr who will cooperate and do what I say but really I am

> just having to be my own dr.

>

> On 11/2/08 4:26 PM, " Lori G " <_lorig713@...

> <mailto:_lorig713%40.lor> _

> (mailto:lorig713@... <mailto:lorig713%40> ) > wrote:

>

>> > Yes, it's saved me many times (including this current infection-now

>> > resolving). My doctor gives muey an emergency prescription to let me use

> at

>> > my own discretion as I need to start it right away. After you have

> recovered

>> > from this, maybe you can ask your doctor about doing the same.

>> >

>> >

>> >

>> >

>> >

>> > ____________ ________ ________ _

>> > From: Amy <_blueyedaze@... <mailto:_blueyedaze%40aol.blu> _

>> (mailto:blueyedaze@... <mailto:blueyedaze%40aol.com> ) >

>> > _@groSMAfrie_ (mailto:

>> <mailto:%40> )

>> > Sent: Sunday, November 2, 2008 4:10:31 PM

>> > Subject: Re: cough medicine

>> >

>> > I forgot cipro! You may have just saved my life, N! Thanks.

>> >

>> > On Nov 2, 2008, at 5:06 PM, wrote:

>> >

>>> >> Have you tried cipro amy? Really even though they say it¢s the same as

>>> >> levequin the side effects are not the same at all...

>>> >>

>>> >> On 11/2/08 3:57 PM, " Amy " <_blueyedaze@...

>>> <mailto:_blueyedaze%40aol.blu> _

> (mailto:blueyedaze@... <mailto:blueyedaze%40aol.com> ) > wrote:

>>> >>

>>>> >>> What does Actifed do? I'm not on an antibiotic because I'm

>>> >> allergic to

>>>> >>> augmentin, zitromax, erythmyicin, augmentin, and the bad levaquin

>>>> >>> experience. =(

>>>> >>>

>>>> >>> On Nov 2, 2008, at 4:36 PM, Lori wrote:

>>>> >>>

>>>>>> >>>>> Mucinex didn't really help me either. I've still been taking

>>> >> about

>>>>>> >>>>> two (old formula) Actifed a day and suctioning only small

>>> >> amounts of

>>>>>> >>>>> fluid. I have vacation days all this week so I am hoping I will

>>> >> be

>>>>>> >>>>> all better by the time I go back to work on the 10th.

>>>>>> >>>>>

>>>>>> >>>>> I hope you feel better very soon! Did you start on antibiotics

>>> >> yet?

>>>>>> >>>>>

>>>>>> >>>>> Lori

>>>>>> >>>>> Sent from my Verizon BlackBerry

>>>>>> >>>>>

>>>>>> >>>>> -----Original Message-----

>>>>>> >>>>> From: Amy <_blueyedaze@... <mailto:_blueyedaze%40aol.blu> _

>>>>>> (mailto:blueyedaze@... <mailto:blueyedaze%40aol.com> )

> <mailto:blueyedaze%mailto:bl> >

>>>>>> >>>>>

>>>>>> >>>>> Date: Sun, 2 Nov 2008 14:57:12

>>>>>> >>>>> <_@groSMAfrie_

>>>>>> (mailto: <mailto:%40>

)

> <mailto:%mailto:SMAfriemai

>>>>> >>>>

>>>>>> >>>>> Subject: Re: cough medicine

>>>>>> >>>>>

>>>>>> >>>>>

>>>>>> >>>>> Thanks! This mucinex isn't doing crap. I'm open to anything.

>>>>>> >>>>>

>>>>>> >>>>>

>>>>>> >>>>> On Nov 2, 2008, at 12:07 PM, Amy M. Marquez wrote:

>>>>>> >>>>>

>>>>>>>> >>>>>>> Amy,

>>>>>>>> >>>>>>>

>>>>>>>> >>>>>>> When I was younger and didn't have access to nebs, cough

>>> >> machines,

>>>>>>>> >>>>>>> percussors, etc. (my parents were not open to many medical

>>>>>>>> >>>>>>> advancements throughout our growing years), we would resort

>>> >> to more

>>>>>>>> >>>>>>> simple techniques as a means to loosen up lung gunk during

>>> >> times of

>>>>>>>> >>>>>>> illness. It might be worth the try...

>>>>>>>> >>>>>>>

>>>>>>>> >>>>>>> Go into the bathroom, shut the door, and draw the shower

>>> >> curtain

>>>>>>>> >>>>>>> closed. Turn on the bath tub faucet and the shower head full

>>> >> blast

>>>>>>>> >>>>>>> as hot as the water will go. Within a few minutes, the water

>>> >> will

>>>>>>>> >>>>>>> steam and the bathroom will eventually fill with steam. Stay

>>> >> in the

>>>>>>>> >>>>>>> bathroom for 20-30 minutes, breathing as deep as you can,

>>> >> allowing

>>>>>>>> >>>>>>> the steam into your lungs, thereby breaking/loosening the

>>> >> gunk up.

>>>>>>>> >>>>>>> Stay tuned to your body so you don't overdo it; the heat and

>>> >> steam

>>>>>>>> >>>>>>> could leave you light-headed sometimes. The steaming process

>>> >> should

>>>>>>>> >>>>>>> be done 2-4 times a day, depending on your need and

>>> >> capability. It

>>>>>>>> >>>>>>> may take a few tries before you feel a difference, but it

>>> >> does work

>>>>>>>> >>>>>>> pretty well...

>>>>>>>> >>>>>>>

>>>>>>>> >>>>>>> Another home remedy we used, though it is not for everyone,

>>> >> is to

>>>>>>>> >>>>>>> add a tablespoon of apple cider vinegar and a tablespoon of

>>> >> honey to

>>>>>>>> >>>>>>> an 8-ounce glass of water. Stir it really well and drink it.

>>> >> The

>>>>>>>> >>>>>>> acid from the vinegar will actually help to break up the gunk,

>>>>>>>> >>>>>>> allowing it to be coughed up pretty easily. The taste isn't

>>> >> too bad,

>>>>>>>> >>>>>>> as it resembles strong apple juice. (My dad used to drink the

>>>>>>>> >>>>>>> mixture minus the honey, but it's disgusting and not

>>> >> something I'd

>>>>>>>> >>>>>>> recommend... recommend...<WBR>though to use it as a gargle

>>> >> works

>>>>>>>> >>>>>>> wonders).

>>>>>>>> >>>>>>>

>>>>>>>> >>>>>>> I hope you feel better soon...

>>>>>>>> >>>>>>>

>>>>>>>> >>>>>>>

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>>

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>> keep trying with the cough assist. try turning up the

>>> >> settings

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>> little by little until you feel uncomfortable.

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>> thats wat i did wen i was flemy

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>>

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>> Jade :)

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>>

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>> -----Original Message-----

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>> From: Amy <blueyedaze@blueyeda>

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>> @gro ups.com

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>> Sent: Sat, 1 Nov 2008 7:45 pm

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>> Subject: cough medicine

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>>

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>> How much do you guys take? I'm using just the

>>> >> expectorant that

>>>>>>>>>> >>>>>>>>> starts

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>>

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>> with G as the active ingredient. I took two tsp at

>>> >> 9:15 and I'm

>>>>>>>>>> >>>>>>>>> still

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>>

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>> struggling. We've tried all my coughing techniques and

>>> >> nothing's

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>>

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>> helping. I have a cough assist, but have no experience

>>> >> using it.

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>>

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>> Trying hard not to freak out...

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>>

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>> [Non-text portions of this message have been removed]

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>>

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>>

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>>>> >>>>>>>>>>>

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>> >>>>>>>>> [Non-text portions of this message have been removed]

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>> >>>>>>>>> [Non-text portions of this message have been removed]

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>> >>>>>>>>>

>>>>>>>>>> >>>>>>>>>

>>>>>>>> >>>>>>>

>>>>>>>> >>>>>>> [Non-text portions of this message have been removed]

>>>>>>>> >>>>>>>

>>>>>>>> >>>>>>> [Non-text portions of this message have been removed]

>>>>>>>> >>>>>>>

>>>>>>>> >>>>>>>

>>>>>>>> >>>>>>>

>>>>>> >>>>>

>>>>>> >>>>>

>>>>>> >>>>>

>>>>>> >>>>>

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Guest guest

I don’t know where you live, but I have a great Doctor in Southern

California, named Dr Law. He didn’t know what SMA is but he knows MD is

and he knows his stuff!

Kemp

Director, OurGV Rewards

<http://www.ourgvrewards.com/> http://www.ourgvrewards.com

Phone: 714-974-5799

Business Phone: 714-974-5693

Cell Phone: 714-244-5920

Phone: 949-579-9465

Email 1: d-kemp@...

Email 2: dkemp@...

<http://www.ourgvmall.com/djk> banner021.jpg

<http://www.benefitbar.com/benefitbar/subscribe/toolbar.php?toolbarId=1136>

http://new.a2success.com/files/Image/banner_468w60h_82608.jpg

From: [mailto: ] On

Behalf Of Ksmile96@...

Sent: Tuesday, November 04, 2008 3:04 PM

Subject: Re: cough medicine

,

I know there is a dad of a girl with SMA 1 who keeps an ongoing list of

SMAers and the Drs they see and recommend. Not sure there are many adults on

the

list tho. He categorizes them by state. I might have one of the copies he

sent. Would you like me to find it and send it to you?

Kimi

}i{ Visit my myspace page and blogs: _www.myspace.com/ksmile96_

(http://www.myspace.com/ksmile96) }i{

" I'm falling apart. I'm barely breathing. With a broken heart, that's still

beating. In the pain, there is healing. In your name, I find meaning. So

I'm holding on, I'm holding on, I'm holding on. I'm barely holding on to

you...and I still see your reflection inside my eyes, that are looking for a

purpose. They're still looking for life.... " - Lifehouse

In a message dated 11/3/2008 12:01:28 A.M. Eastern Standard Time,

nicoleroberts@... <mailto:nicoleroberts%40usfamily.net> writes:

My dr won;t do that and it's really frustrating to me since it isn't always

a helpful dr on call and it's not like I can " wait until Monday " . I

actually plan to switch drs because it pisses me off! speaking of that, I

have been trying to find a new dr but it is freaking impossible to find one

that has ever even heard of sma. Pretty scary. Does anyone know if there is

any sort of list somewhere of drs that know about sma? I feel like the best

I can do is find a dr who will cooperate and do what I say but really I am

just having to be my own dr.

On 11/2/08 4:26 PM, " Lori G " <_lorig713@...

<mailto:_lorig713%40.lor> _

(mailto:lorig713@... <mailto:lorig713%40> ) > wrote:

> Yes, it's saved me many times (including this current infection-now

> resolving). My doctor gives muey an emergency prescription to let me use

at

> my own discretion as I need to start it right away. After you have

recovered

> from this, maybe you can ask your doctor about doing the same.

>

>

>

>

>

> ____________ ________ ________ _

> From: Amy <_blueyedaze@... <mailto:_blueyedaze%40aol.blu> _

(mailto:blueyedaze@... <mailto:blueyedaze%40aol.com> ) >

> _@groSMAfrie_ (mailto:

<mailto:%40> )

> Sent: Sunday, November 2, 2008 4:10:31 PM

> Subject: Re: cough medicine

>

> I forgot cipro! You may have just saved my life, N! Thanks.

>

> On Nov 2, 2008, at 5:06 PM, wrote:

>

>> Have you tried cipro amy? Really even though they say it¢s the same as

>> levequin the side effects are not the same at all...

>>

>> On 11/2/08 3:57 PM, " Amy " <_blueyedaze@...

<mailto:_blueyedaze%40aol.blu> _

(mailto:blueyedaze@... <mailto:blueyedaze%40aol.com> ) > wrote:

>>

>>> What does Actifed do? I'm not on an antibiotic because I'm

>> allergic to

>>> augmentin, zitromax, erythmyicin, augmentin, and the bad levaquin

>>> experience. =(

>>>

>>> On Nov 2, 2008, at 4:36 PM, Lori wrote:

>>>

>>>>> Mucinex didn't really help me either. I've still been taking

>> about

>>>>> two (old formula) Actifed a day and suctioning only small

>> amounts of

>>>>> fluid. I have vacation days all this week so I am hoping I will

>> be

>>>>> all better by the time I go back to work on the 10th.

>>>>>

>>>>> I hope you feel better very soon! Did you start on antibiotics

>> yet?

>>>>>

>>>>> Lori

>>>>> Sent from my Verizon BlackBerry

>>>>>

>>>>> cough medicine

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> How much do you guys take? I'm using just the

>> expectorant that

>>>>>>>>> starts

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> with G as the active ingredient. I took two tsp at

>> 9:15 and I'm

>>>>>>>>> still

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> struggling. We've tried all my coughing techniques and

>> nothing's

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> helping. I have a cough assist, but have no experience

>> using it.

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>> Trying hard not to freak out...

>>>>>>>>>

>>>>>>>>>>>

>>>>>>>>>

>>>>>>>>>>>

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Guest guest

I also have a list of meds and the contact info for all my Drs. Since I

have nursing I already needed this. I use the computer to keep the summaries

of

changes since bringing all the nurses notes is impossible, but my calendar

is still a little pocket one. It's falling apart by Nov, but it serves its

purpose. You aren't the only one not using a PDA :).

Kimi

}i{

Visit my myspace page and blogs: _ www.myspace.com/ksmile96_

(http://www.myspace.com/ksmile96) }i{

" We come to love not by finding a perfect person but by learning to see an

imperfect person perfectly " - San Keen

In a message dated 11/5/2008 1:14:38 P.M. Eastern Standard Time,

dinaa68@... writes:

I keep a medical journal...its a small notebook with contact information for

all my doctors and related people (therapists, nutritionist, etc), list of

medications, tests performed, diagnoses, time and dates of upcoming

appointments, etc. Once its created its not hard to keep up with it. Nowadays

most

people would probably use a PDA, but I'm still using pen and paper. :)

Dina

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>> keep trying with the cough assist. try turning up the

> >> settings

> >>>>>>>>>

> >>>>>>>>>>> little by little until you feel uncomfortable.

> >>>>>>>>>

> >>>>>>>>>>> thats wat i did wen i was flemy

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>> Jade :)

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>> -----Original Message-----

> >>>>>>>>>

> >>>>>>>>>>> From: Amy <blueyedaze@ aol. com>

> >>>>>>>>>

> >>>>>>>>>>> @gro ups.com

> >>>>>>>>>

> >>>>>>>>>>> Sent: Sat, 1 Nov 2008 7:45 pm

> >>>>>>>>>

> >>>>>>>>>>> Subject: cough medicine

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>> How much do you guys take? I'm using just the

> >> expectorant that

> >>>>>>>>> starts

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>> with G as the active ingredient. I took two tsp at

> >> 9:15 and I'm

> >>>>>>>>> still

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>> struggling. We've tried all my coughing techniques and

> >> nothing's

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>> helping. I have a cough assist, but have no experience

> >> using it.

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>> Trying hard not to freak out...

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>> [Non-text portions of this message have been removed]

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>>>

> >>>>>>>>>

> >>>>>>>>> [Non-text portions of this message have been removed]

> >>>>>>>>>

> >>>>>>>>> [Non-text portions of this message have been removed]

> >>>>>>>>>

> >>>>>>>>>

> >>>>>>>>>

> >>>>>>>

> >>>>>>> [Non-text portions of this message have been removed]

> >>>>>>>

> >>>>>>> [Non-text portions of this message have been removed]

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

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