HI

[Guest guest]

Bonjour Katy,

Merci je suis très contente d'avoir enfin trouver un

site avec des gens qui me ressemble. J'ai découvert ce site

avec " magic foundation " Ils m'ont envoyé de la documentation et il y

avait le site de yahoo dedans. Alors je me suis inscrite en esperant

pouvoir parler avec des comme moi avec le syndrome. Je me sens

tellement moin seul. Toi est ce que tu as le RSS ? J'aimerais

tellement pouvoir parler bien l'anglais mais je vais me débrouiller

pour pouvoir correspondre avec vous.

Merci d'avoir répondu à mon message.

Hi katy,

Im so happy to see other people like me with the RSS. I Find

this website with the magicfoundation. But im not member of magic

foundation. I don't know if im going to the convention on July

because i live in Quebec and i think its was very expensive for me

to go in Chicago .. but i will try to going because i will like to

meet people like me. Sorry for my english i try so much lol I feel

very good because i know im not only in this world. have you the

RSS ? Thank you very much for ansering me .

Mélissa

-- In RSS-Support , " katyudine " <rss2katy@h...>

wrote:

>

> Bon Jour !

>

> Bien venue! je suis tres contente de faire votre connaissance.

>

> Thanks so much for writing!! I know you'll get some wonderful

> responses from this listserve...Also:

> 1st: There is a listserve devoted to adults living with RSS! Go

> here to join: http://health.groups.yahoo.com/group/RSS-People/

>

> 2nd: consider coming to the MAGIC Foundation's annual convention,

> held in Chicago in July! I think it would a great opportunity for

> you to meet other RSS adults as well as offer inspiration to other

> families. I know that the adults who have attended in the past

have

> all enjoyed the experience.

>

> 3rd: Would you like to write a little story about how you have

dealt

> with RSS? We would love to include it in our next

newsletter!!!!!!!!

>

> Good luck.!

> Katy Frissora

> MAGIC Foundation RSS Division Co-Consultant

> Mom to ,age 8, RSS

>

>

>

> >

> > Hi everyone

> > my name is melissa and i'm 20 years old. I live in

> Québec

> > (Canada) and i would like to talk with other person like me,

with

> > the siLver syndrome. I speak french but i try to speak

> > english.

> >

> > Bonjour tous le monde,

> > Je m'apelle Mélissa et j'ai 20 ans je vis

au

> > Canada et je parle Français mais j'essaie de me débrouiller en

> > anglais. Je suis très contente de voir qu'il y a d'autre gens

comme

> > moi avec le syndrome de silver russell. J'aimerais beaucoup

parler

> > avec des gens qui ont la même chose que moi. Merci

> >

> >

[Guest guest]

Hi Jodie,

Im so happy to can meet other people like me. Im from Québec

and i don't speak very good in english. But i will try. I can see

that your litle boy have the RSS. Are you member of magic

foundation? i can not explain my story very well cause im not very

good in english but i will ask my mother to right my story on this

website. thank you very much to anwsering me.I appreciate.

Mélissa

>

> Hi !!

> welcome to the group, there are couple of other rss adults on

here,

> plus there is a list just for you guys (i am not sure the address

> but i am sure one of them will respond!!!) it will be nice to

here

> from you about your experiences growing up with rss!!

>

> jodie c.

> (nicholas-6 1/2 nonrss, christopher-4 rss 27lbs 6oz 36 1/4 "

> periactin 4.5, ght genotropin .5, assmentry(left side 1cm), ADHD

and

> OCD possible, johnathon-20m nonrss)

[Guest guest]

Hi ,

My sister is visiting me from Paris and would be glad to help

translate your story for the listserve, if you like! Write me at

rss2katy@...

Katy

> >

> > Hi !!

> > welcome to the group, there are couple of other rss adults on

> here,

> > plus there is a list just for you guys (i am not sure the address

> > but i am sure one of them will respond!!!) it will be nice to

> here

> > from you about your experiences growing up with rss!!

> >

> > jodie c.

> > (nicholas-6 1/2 nonrss, christopher-4 rss 27lbs 6oz 36 1/4 "

> > periactin 4.5, ght genotropin .5, assmentry(left side 1cm), ADHD

> and

> > OCD possible, johnathon-20m nonrss)

[Guest guest]

Hi

My name is Debby and my son has RSS. We live in Toronto. Unfortunately the

extent of my French is bonjour and au revoir. That's about it LOL.

Your English is fine. Welcome to the group. I just wanted to wave to a

fellow Canadian.

When did your find out you had RSS?

Debby\

Hi

>

>

> Hi everyone

> my name is melissa and i'm 20 years old. I live in Québec

> (Canada) and i would like to talk with other person like me, with

> the siLver syndrome. I speak french but i try to speak

> english.

>

> Bonjour tous le monde,

> Je m'apelle Mélissa et j'ai 20 ans je vis au

> Canada et je parle Français mais j'essaie de me débrouiller en

> anglais. Je suis très contente de voir qu'il y a d'autre gens comme

> moi avec le syndrome de silver russell. J'aimerais beaucoup parler

> avec des gens qui ont la même chose que moi. Merci

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Bonjour ,

Je m'appelle et mon fils a RSS. Je suis heureuse que tu as trouve ce

site. Je parle francais si tu veux communiquer en francais, mais je vois

que tu parle englais tres bien.

Bienvenue,

Hi

>

>

> >

> >

> > Hi everyone

> > my name is melissa and i'm 20 years old. I live in Québec

> > (Canada) and i would like to talk with other person like me, with

> > the siLver syndrome. I speak french but i try to speak

> > english.

> >

> > Bonjour tous le monde,

> > Je m'apelle Mélissa et j'ai 20 ans je vis au

> > Canada et je parle Français mais j'essaie de me débrouiller en

> > anglais. Je suis très contente de voir qu'il y a d'autre gens comme

> > moi avec le syndrome de silver russell. J'aimerais beaucoup parler

> > avec des gens qui ont la même chose que moi. Merci

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Mélissa wrote:

Ah oui je suis très contente que vous aillez répondu à mon message.

Est ce que votre garçon se porte bien? Vous vivez où au Canada ?

> Hi everyone

> my name is melissa and i'm 20 years old. I live in

Québec

> (Canada) and i would like to talk with other person like me, with

> the siLver syndrome. I speak french but i try to speak

> english.

>

> Bonjour tous le monde,

> Je m'apelle Mélissa et j'ai 20 ans je vis au

> Canada et je parle Français mais j'essaie de me débrouiller en

> anglais. Je suis très contente de voir qu'il y a d'autre gens

comme

> moi avec le syndrome de silver russell. J'aimerais beaucoup parler

> avec des gens qui ont la même chose que moi. Merci

>

>

>

> allo moi aussi j habite au canada mon garcon de 20mois a le

sindrome de silver russell

> allo j habte a montreal canada et toi

>

>

> ---------------------------------

>

[Guest guest]

Mélissa wrote:

Ah oui je suis très contente que vous aillez répondu à mon message.

Est ce que votre garçon se porte bien? Vous vivez où au Canada ?

> Hi everyone

> my name is melissa and i'm 20 years old. I live in

Québec

> (Canada) and i would like to talk with other person like me, with

> the siLver syndrome. I speak french but i try to speak

> english.

>

> Bonjour tous le monde,

> Je m'apelle Mélissa et j'ai 20 ans je vis au

> Canada et je parle Français mais j'essaie de me débrouiller en

> anglais. Je suis très contente de voir qu'il y a d'autre gens

comme

> moi avec le syndrome de silver russell. J'aimerais beaucoup parler

> avec des gens qui ont la même chose que moi. Merci

>

>

>

> allo moi aussi j habite au canada mon garcon de 20mois a le

sindrome de silver russell

>

>

>

> ---------------------------------

>

[Guest guest]

Sorry I've not been around, this last couple of weeks, in fact couple of months have been difficult, going off the Meth and Remicade, the liver bx and etc... then we switched our insurance plan, not company just plan, and we are paying hell for it, they told us it would help us out at tax time and save us some money, what they didn't know was that our deductible would start over, it's been a nightmare, then this week they tried to tell us we had to get pre auth before I could get the Remicade, and I was desperately needing it, finally 4 pm the day before I am to get it, my husband reminds the insurance company of the independent review that OK'd the Remicade for a year, and if it was not at my doctors office by 10 am on Friday that they would be in breech of contract, and he would be pursuing it, of course they still said they would do there best. I got a call at 830 am Friday saying my Remicade was just delivered and I can come in and get it! I also talked to the doctor about how bad the last week is, and I was barely catching up from the last hiatus from the drug, so he said I could come in, in 5 instead of 6 weeks, I just pray that does not turn into another battle with the insurance company.

as you all know the emotional things can be just as hard if not more difficult on the Sarc as physical can be. I see many of you are having hard times, and it's that time of year for some of us, the cold is a killer, our first day of cold here, my body went into shock and I hurt so deep, and I can not find a medication that will take away the pain without making me feel sick!

I haven't even been keeping up with reading all the emails, just when I think I'm feeling better something happens as I know you all feel the same way! I can tell I am already feeling better with the Remicade, but the cold still hurts.

you are all in my prayers, as I know many of you too are having hard times, I don't know how you all do what you can and keep going, you are amazing.

God BLess, Marla

--

[Guest guest]

yes, yes, yes

we went out for pizza

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: HiTo: Breathe-Support Date: Saturday, November 14, 2009, 6:52 PM

Hi Peggy,Hope your having a good day. It was a beautiful sunny day in northeast Ohio. No cooking for me today. We went out for dinner!PJ in OH,54, IPF 09, Sjogren's 95 Hi Hi Group, Well is messing with our internet server so "I DON"T HAVE MY E-MAIL"Oh well I am reading and posting from the board. I feel like I in someone elses kitchen cookin... lolPeggy

[Guest guest]

Peggy and Bruce... Peggy, I'm glad to hear you are doing ok and the morphine is helping. It's supposed too.

Bruce, what you wrote I can only add 'DITTO'

hUGS TO YOU BOTH.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Re: hi

PeggyI don't think you called early. They are making yours and 's lifemore comfortable. I'll be honest. I fully intend to get them early andlive a long time with hospice. I expect them to renew and renew andrenew. When I feel I need the help, I'm going to get it just like youdid. That doesn't mean I'm giving up or plan to go soon or that I'mfeeling horrible. Just means there is a service available that helps ourlives. I think thats a terrrible misconception that you have to behorrible for hospice. They forget that even when the doctor puts a timeon our butts just to get us approved, it washes right off with the nextshower as he used a water soluble stamp. So, we ignore it.>> Hi Group, My nurse came today her name is Jeanie, really nice andcaring. we visited for a couple hours. we went over the medications andtheir job ( I guess you would say) It is to keep me comfortable. I likethat but they do want me to take more morphine than I need but I havethe last word on that. I think she got it that I an very sensitive tomedication. If I took the> dose prescribed I would wake up by Christmas. We will be watching tosee what goes on.. lol I do trust them so I am fine.>> is so relived to have backup. He was so happy to have someone tocall if he needs help or doesn't know what to do in a certain situation.I feel like I may have called a little early because I still feel "GOOD"even though the morphine does relieve the discomfort. and I havedecided to just take it every 4 to 5 hours. They call for every hour..NOOOO. But they have no problem> with my wishes. I also have a DNA on the frig. and an emergency numberfor .> I think that is about it for today. Lord I hope I haven't sent thisearlier today. LOL I have messed with this e-mil all day..> Love to All..>>> Love & Prayers> Peggy, Florida> IPF 2004> close Back to Sent>>>>>> Love & Prayers> Peggy, Florida> IPF 2004>

[Guest guest]

Peggy

sounds like hospice is working out for both you and

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: hiTo: "Breathe-Support " <Breathe-Support >Date: Wednesday, November 18, 2009, 10:30 AM

Hi Group, My nurse came today her name is Jeanie, really nice and caring. we visited for a couple hours. we went over the medications and their job ( I guess you would say) It is to keep me comfortable. I like that but they do want me to take more morphine than I need but I have the last word on that. I think she got it that I an very sensitive to medication. If I took thedose prescribed I would wake up by Christmas. We will be watching to see what goes on.. lol I do trust them so I am fine. is so relived to have backup. He was so happy to have someone to call if he needs help or doesn't know what to do in a certain situation. I feel like I may have called a little early because I still feel "GOOD" even though the morphine does relieve the discomfort. and I have decided to just take it every 4 to 5 hours. They call for every hour.. NOOOO. But they have no problemwith my wishes. I also have a DNA on the frig. and an emergency

number for .I think that is about it for today. Lord I hope I haven't sent this earlier today. LOL I have messed with this e-mil all day..Love to All..Love & PrayersPeggy, FloridaIPF 2004close Back to Sent Love & PrayersPeggy, FloridaIPF 2004

[Guest guest]

oops !! sorry it got sent twice!!

Sorry for wasting your time

Geeta

> >

> > Hi Group, My nurse came today her name is Jeanie, really nice and caring. we

visited for a couple hours. we went over the medications and their job ( I guess

you would say) It is to keep me comfortable. I like that but they do want me to

take more morphine than I need but I have the last word on that. I think she got

it that I an very sensitive to medication. If I took the

> > dose prescribed I would wake up by Christmas. We will be watching to see

what goes on.. lol I do trust them so I am fine.

> >

> > is so relived to have backup. He was so happy to have someone to call

if he needs help or doesn't know what to do in a certain situation. I feel like

I may have called a little early because I still feel " GOOD " even though the

morphine does relieve the discomfort. and I have decided to just take it

every 4 to 5 hours. They call for every hour.. NOOOO. But they have no problem

> > with my wishes. I also have a DNA on the frig. and an emergency number for

.

> > I think that is about it for today. Lord I hope I haven't sent this earlier

today. LOL I have messed with this e-mil all day..

> > Love to All..

> >

> >

> > Love & Prayers

> > Peggy, Florida

> > IPF 2004

> > close Back to Sent

> >

> >

> >

> >

> >

> > Love & Prayers

> > Peggy, Florida

> > IPF 2004

> >

>

[Guest guest]

Geeta, Thanks for your kind words. I hope you are doing well. Hospice has just been wonderful. The medication does help with the cough.Love & PrayersPeggy, FloridaIPF 2004

[Guest guest]

Geeta no OOPS I still smile when I see your name.. ;)Love & PrayersPeggy, FloridaIPF 2004----- "Gita" wrote:

>

> > oops !! sorry it got sent twice!!> Sorry for wasting your time> Geeta> > > >> > > Hi Group, My nurse came today her name is Jeanie, really nice and caring. we visited for a couple hours. we went over the medications and their job ( I guess you would say) It is to keep me comfortable. I like that but they do want me to take more morphine than I need but I have the last word on that. I think she got it that I an very sensitive to medication. If I took the> > > dose prescribed I would wake up by Christmas. We will be watching to see what goes on.. lol I do trust them so I am fine.> > > > > > is so relived to have backup. He was so happy to have someone to call if he needs help or doesn't know what to do in a certain situation. I feel like I may have called a little early because I still feel "GOOD" even though the morphine does relieve the discomfort. and I have decided to just take it every 4 to 5 hours. They call for every hour.. NOOOO. But they have no problem> > > with my wishes. I also have a DNA on the frig. and an emergency number for .> > > I think that is about it for today. Lord I hope I haven't sent this earlier today. LOL I have messed with this e-mil all day..> > > Love to All..> > > > > > > > > Love & Prayers> > > Peggy, Florida> > > IPF 2004> > > close Back to Sent > > > > > > > > > > > > > > > > > > Love & Prayers> > > Peggy, Florida> > > IPF 2004> > >> >> >

>