Re: Hello

[Guest guest]

Hi Steph,

Glad to see you joined the listserve. Hopefully, more adults will subscribe

as the word gets out.

[Guest guest]

Hi ,

Welcome to the RSS Support list. I think most of the people on this list are

parents of RSS children. However, your experiences and views are most

welcome. You can help us to know what to expect for our RSS children, if you

want too. Hopefully we can help you other matters as you encounter more of

the " adult " (depends on your definition) world.

Ken M

(father to (RSS) 2 yrs, 21 pounds & 31 1/4 " )

----------

>

>To: RSS-Supportonelist

>Subject: Hello

>Date: Mon, May 24, 1999, 11:51 AM

>

>

>

> Hello,

> My name is Steph and I have RSS. I have just began subscribing to this

> list and was wondering whether there are any other adults who have this

> condition (I'm 19)on this list, who would like to interact.

> Bye

> Steph

>

>

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

> Give back to your community through " Grow to Give. "

> http://www.ONElist.com

> See homepage for details.

>

[Guest guest]

Hello Ken,

Thank you for your welcome. I have had chance to read quite a few of the

e-mails that are sent to listserve and find that it is more concentrated on

the problems that RSS children have. Many of the centres of information that

I have been in contact also adopt this - meaning that it all seems to be

parent-orientated rather than actually focusing on what the RSS child wants

to talk about.

I think it would be great if more people with RSS could get in touch with

one another (maybe a list for RSS people to talk about anything).

Now a little more about myself... I was diagnosed when I was 6 years old. I

have been through mainstream school, and sixth form college (I'm from

England) and I am currently at University, studying computers and the

Internet. I tire easily but like to keep myself occupied. I have a personal

assistant that helps me around University - especially for opening heavy

doors, as I have limited strength in my arms, due to low muscle-tone. I have

had hearing problems since I was about 11. I had gromits in my ears (until

they fell out!) and still have trouble hearing (mainly when people are

whispering).

Please feel free to ask me any questions about this condition.

Regards

[Guest guest]

Dear Dennise,

Thanks for welcome too! I have been in touch with one another

young woman who lives in America. I was put in touch by Stimmel from

the MAGIC foundation. Otherwise, I met some people with my condition when I

was about 13 years old and have not met any one else since. I'm glad to be

on this list and look forward to hearing from everyone.

Bye for Now

[Guest guest]

Hi and welcome to the list! As you have observed most of the

people on this list have children with RSS, but this list was created for

the support of all people with RSS, including adults. This list is only

about six weeks old and at the moment you are the only adult with RSS on it,

but as time goes by I hope that there will be other adults to join the list

as well. I would also like to see some older children join the list too,

if they like.

Thanks very much for sharing some personal information about yourself. Do

you know other adults with RSS?

Dennise

Mom of Ross, age 5 ½

Re: Hello

>

>

>Hello Ken,

>Thank you for your welcome. I have had chance to read quite a few of the

>e-mails that are sent to listserve and find that it is more concentrated on

>the problems that RSS children have. Many of the centres of information

that

>I have been in contact also adopt this - meaning that it all seems to be

>parent-orientated rather than actually focusing on what the RSS child wants

>to talk about.

>I think it would be great if more people with RSS could get in touch with

>one another (maybe a list for RSS people to talk about anything).

>Now a little more about myself... I was diagnosed when I was 6 years old. I

>have been through mainstream school, and sixth form college (I'm from

>England) and I am currently at University, studying computers and the

>Internet. I tire easily but like to keep myself occupied. I have a personal

>assistant that helps me around University - especially for opening heavy

>doors, as I have limited strength in my arms, due to low muscle-tone. I

have

>had hearing problems since I was about 11. I had gromits in my ears (until

>they fell out!) and still have trouble hearing (mainly when people are

>whispering).

>

>Please feel free to ask me any questions about this condition.

>Regards

>

>

>

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

>ONElist: the best source for group communications.

>http://www.onelist.com

>Join a new list today!

>

[Guest guest]

Welcome Steph!!! I just wanted to let you know that I'm very happy that you

have chosen to join our list!

Your mentioning the fact that you have a hard time opening heavy doors due to

the fact you have low muscle tone brings up a question..........I hope this

doesn't sound stupid, but can lifting proper weights and exercise to build

muscle help in strength for RSS people with low muscle tone?? Just

curious......

Stacie

Mommy to daughter (almost 6) and son, (2 1/2 yrs.) with RSS & g-tube

stephanie young wrote:

>

>

> Hello,

> My name is Steph and I have RSS. I have just began subscribing to this

> list and was wondering whether there are any other adults who have this

> condition (I'm 19)on this list, who would like to interact.

> Bye

> Steph

>

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

> Give back to your community through " Grow to Give. "

> http://www.ONElist.com

> See homepage for details.

[Guest guest]

Good Luck !

Hello

> From: brbuckcc@...

>

> Hello,

> My name is and I am new to your group. I am 25 years old 5'5 " and

my BMI is 41. I am waiting on insurance approval for RNY surgery. I have

Humana PPO.

> It is so wonderful to know that so many other women are experiencing the

same things that I have. I have been pregnant three times and have had

three misscarriages. The last one was the hardest, I was 16 weeks pregnant

with twins. All three times I have been able to conceive with Clomid.

> I am praying that after my RNY I will be able to conceive and carry the

baby to term. I am a RN in a Pediatric Intensive Care Unit so I work with

children everyday. I love kids and it is my dream to be a mommy.

> I just want to say thank you to the members of this community for sharing

your stories and giving hope to people like me.

> Thank you,

>

>

> > Children are a reward from the Lord.

> Psalm 127:3

[Guest guest]

,

Welcome to our group! Let me first say I am sorry for your losses.

I lost my first baby at 20 weeks and I know how truly painful it is. I

pray that God will be with you as you wait for your approval and as you

journey towards a new you. Just remember, patience is a virtue. I hope

all of your dreams will come true!

- Tara Lynn

brbuckcc@... wrote:

>

> From: brbuckcc@...

>

> Hello,

> My name is and I am new to your group. I am 25 years old 5'5 " and my

BMI is 41. I am waiting on insurance approval for RNY surgery. I have Humana

PPO.

> It is so wonderful to know that so many other women are experiencing the same

things that I have. I have been pregnant three times and have had three

misscarriages. The last one was the hardest, I was 16 weeks pregnant with

twins. All three times I have been able to conceive with Clomid.

> I am praying that after my RNY I will be able to conceive and carry the baby

to term. I am a RN in a Pediatric Intensive Care Unit so I work with children

everyday. I love kids and it is my dream to be a mommy.

> I just want to say thank you to the members of this community for sharing your

stories and giving hope to people like me.

> Thank you,

>

>

> > Children are a reward from the Lord.

> Psalm 127:3

[Guest guest]

,

Welcome to our group! Let me first say I am sorry for your losses.

I lost my first baby at 20 weeks and I know how truly painful it is. I

pray that God will be with you as you wait for your approval and as you

journey towards a new you. Just remember, patience is a virtue. I hope

all of your dreams will come true!

- Tara Lynn

brbuckcc@... wrote:

>

> From: brbuckcc@...

>

> Hello,

> My name is and I am new to your group. I am 25 years old 5'5 " and my

BMI is 41. I am waiting on insurance approval for RNY surgery. I have Humana

PPO.

> It is so wonderful to know that so many other women are experiencing the same

things that I have. I have been pregnant three times and have had three

misscarriages. The last one was the hardest, I was 16 weeks pregnant with

twins. All three times I have been able to conceive with Clomid.

> I am praying that after my RNY I will be able to conceive and carry the baby

to term. I am a RN in a Pediatric Intensive Care Unit so I work with children

everyday. I love kids and it is my dream to be a mommy.

> I just want to say thank you to the members of this community for sharing your

stories and giving hope to people like me.

> Thank you,

>

>

> > Children are a reward from the Lord.

> Psalm 127:3

[Guest guest]

Hi Crystal.....I am glad to see you are back!

Crystal

(the other gem)

Hello

> Because there are 3 very nice ladies out here that were so very kind to

personally send me messages (after I unsubscribed to this list) I have

decided to come back. You know who you are and I say " Thank You "

>

> Now there are two JEMS in the midst!

>

> Crystal

>

>

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

[Guest guest]

LOL no my middle name is Lee but my daughter is Amber Lee-Ann.....we are

trying to think of a girl and boy gem names for the baby lol any

ideas???????

Hello

>

>

> > Because there are 3 very nice ladies out here that were so very kind to

> personally send me messages (after I unsubscribed to this list) I have

> decided to come back. You know who you are and I say " Thank You "

> >

> > Now there are two JEMS in the midst!

> >

> > Crystal

> >

> >

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

[Guest guest]

Do you remember Jem and the Holograms? Old cheesy Barbie knock off doll...I

had a friend in high school named Amber, for about two years we referred to

ourselves as the Jems (we thought we were cool!)

Don't tell me your middle name is Ann as well?

Re: Hello

Hi Crystal.....I am glad to see you are back!

Crystal

(the other gem)

Hello

> Because there are 3 very nice ladies out here that were so very kind to

personally send me messages (after I unsubscribed to this list) I have

decided to come back. You know who you are and I say " Thank You "

>

> Now there are two JEMS in the midst!

>

> Crystal

>

>

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

[Guest guest]

Ruby, Jasper, Pearl, Beryl ( I actually work with a woman whose father

wanted to name her this, Luckily they decided on Anne), Olivine,

Coral...there isn't a whole lot for boys names unless you never want them to

be able to spell it. LOL

Re: Hello

LOL no my middle name is Lee but my daughter is Amber Lee-Ann.....we are

trying to think of a girl and boy gem names for the baby lol any

ideas???????

Hello

>

>

> > Because there are 3 very nice ladies out here that were so very kind to

> personally send me messages (after I unsubscribed to this list) I have

> decided to come back. You know who you are and I say " Thank You "

> >

> > Now there are two JEMS in the midst!

> >

> > Crystal

> >

> >

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

[Guest guest]

I seriously think he's worried and in denial, or doesn't know the full

extent. my parents always think on my good days i can do everything! i do

dishes, floor, clean my room and pack, then for 2 full days i'm in bed or on

the sofa with a heating pad because i overdid it. then a good day, and the

cycle starts again. HOW to get them to understand... we need a print out, 2-3

pages, that explains this disease to them. that doesn't mean it'd help...

just help them comprehend. luckily i'm moving in with my mom soon, she also

has fibro. she managed it really well, she's really strong. even if she is

severely mentally ill and refuses treatment. i wish they all would

UNDERSTAND. my mom used to yell at us when she couldn't do stuff (I do this

now too unfortunately, because they won't listen until i yell). but one thing

i would NEVER do, she did. she used to say she would love for us to be in her

body, or experience the pain for ONE DAY, to understand. i wouldn't wish this

on my worst enemy. i'm glad they don't fully understand, no one except who

has this can fully understand. good luck

amy

In a message dated 5/24/2000 10:39:38 PM Central Daylight Time,

TeddysPlaceNet@... writes:

<< Is anyone on I " m having a terrible fight with my husband he just thinks

that

I can take a med and be who I was before. Please I need help

Teddy >>

[Guest guest]

Today I could shoot the shrink. I couldn't believe she had me set up to do

marriage counseling. She just doesn't have a grip. How am I supposed to work

on normal things when I can't even deal with me? How do I bury myself and get

used to this new person I'm stuck with when I'm supposed to be making my dh

feel better.

The kids I understand and I tell them Mommy is overwhelmed. But he made a vow

for better or worse in sickness and in health till death do you part. Well

right now I'm sick and I have to deal with that before I can treat before I

can deal with life.

?

I had so held on to the hope that this was something they could fix. I knew

in the back of my mind that I had MS, Having tons of medical knowledge I knew

it but just kept thinking I was missing something that they would catch. And

now after 5 years of this and being told I'm right but I also have FMS and

CPS on top of it. It's just too much. I know I'm being selfish but don't I

have a right to be? Is it selfish to be terrified? Is it selfish to be

helpless hopeless?

And this take a pill. I don't get that one either. All the research says it

might help ease symptoms. My dh thinks that it will get rid of the symptoms

and I will be all better. It doesn't matter how many articles that I read do

him he can't deal with that fact whatsoever. I'm just not ready to take the

stupid pills yet. I'm not ready for anything yet except trying to make it to

tomorrow without hurting myself or someone.

GRRRR

Teddy

[Guest guest]

Well you can tell him that that isn't the case. What you have ravages the whole

body. Every system, digestive, neurological, nervous. In fact, there isn't a

pill that does the trick. If that were the case we would all be taking it.

In order to manage, we must keep stress levels down, exercise when we can and

rest when our bosy tells us to.

Hugs to you,

TeddysPlaceNet@... wrote:

> Is anyone on I " m having a terrible fight with my husband he just thinks that

> I can take a med and be who I was before. Please I need help

> Teddy

>

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

> Best friends, most artistic, class clown Find 'em here:

> http://click./1/4054/5/_/442796/_/959225950/

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

>

> VIP

> Add or view links about fibro/CFS.

> http://www.onelist.com/links/

>

> TO unsubscribe.

> Go to: http://www.onelist.com/ Log in:

> Go to this list: Click on your name: Select your choice.

>

> LIST OWNER:oa2@...

--

Early morning cheerfulness can be

extremely obnoxious- Feather

Mom to Bear, Wife to

[Guest guest]

Hi Again,

Thank you all so much for the warm welcome. It is so nice to see that

others understand what this is like. Some days are ok, some days are awful,

and others are beyond description. It can wear a person down. Having a

forum for support and information is so refreshing.

Debbie, I never thought to mention that I live in the Northern Tampa area of

Florida. If anyone has a terrific doctor in this area I am in the market

for one. So far I haven't found a really top notch doc here. The doctor I

am seeing is very caring, but I am not really prospering under her care.

Typing aggravates the trigger point pain, so I must sign off now.

Bye for now,

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

> Here's a third for the auto accident group

****************************8

Well, I've always said that my FMS was brought on by the tic bite and Lyme,

but I was in two auto accidents, one in 1985 and another in 1986, then in

was bit by the tic in July of 1987. By the end of August, 1987, I was sick

and have been sick every since, however, because of the accidents, I now

have bone spurs in my neck and that only complicates the FMS.

Pam DuBois

Soft Hugs to You Today & Remember,

Educated People Heal Themselves!

Visit me at: www.my.treeway.com/Singingbird

272-243-130

[Guest guest]

At 04:09 PM 6/26/00 -0700, you wrote:

>,

> I have had FMS for approximately 4 years and I also received this

>wonderful disease from an automobile accident. Welcome to the group and I

>hope that you will not only feel welcome here, but that we are able to

>answer some of your questions and maybe you have answers to some of ours.

>Where are you located at? Maybe someone on this list is already seeing an

>awesome doctor in your area and can be of help. I look forward to seeing

>you post and I hope that part of your day today was pain free.

>Debbie G.

and Debbie G.,

Here's a third for the auto accident group....me....been 4 1/2 yrs now and

I have the most marvelous fibro....I'm just so impressed that in 2 seconds

of carelessness somebody I don't know could take my life and cause me to

find out how adaptable I am and how tolerant of meds and pain....course I

did find these lovely people, but none of us would care to meet under THESE

circumstances....but they're great about helping in any way they can....Dee...

> Hello

>

>

>> Hi,

>>

>> I am new to this list and thought I should introduce myself. I'm just not

>> sure what to say...

>>

>> I had an auto accident 10 years ago that triggered the start of FM/CFIDS.

>> Since then it has been up and down. (More down lately.) It took a long

>> time to get an accurate diagnosis and finding relief has been impossible

>> thus far. I am hoping the list can give me insights into this problem and

>> creative ways to deal with the symptoms.

>>

>> I dislike being defined by a chronic illness. After all, there is more to

>> me than FM/CFIDS. Worse, I am tired of people insisting that there is

>> nothing wrong. I hate having to defend myself in situations where the

>> illness is an issue. No one ever asks a guy in a wheel chair to run

>around

>> the block or gives a diabetic a cookie just to be sure they have a glucose

>> problem. Some people have the nerve to insist it is a " mental problem " .

>> It's infuriating!

>>

>> Perhaps people here will understand,

>>

>> ________________________________________________________________________

>> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

>>

>>

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

>> Best friends, most artistic, class clown Find 'em here:

>> http://click./1/5543/6/_/442796/_/961896792/

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

>>

>>

>> ~*~CHAT TIME:~*~

>> MON & THURS

>> Day Eastern 4 PM, Central 3 PM, Mt 2 PM Pacific 1 PM

>> Night Eastern 9 Pm, Central 8 Pm, Mt 7 PM Pacific 6 PM

>> WHERE: /chat/

>>

>>

>> VIP

>> If there is a problem on this list notify.

>> Co-Moderator

>> The_List_Owner@...

>>

>>

>> Add or view links about fibro/CFS.

>> http://www.onelist.com/links/

>>

>> TO unsubscribe.

>> Go to: http://www.onelist.com/ to this list and unsub from it.

>>

>>

>>

>>

>>

>>

>

>

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

>Was the salesman clueless? Productopia has the answers.

>http://click./1/4633/6/_/442796/_/962060819/

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

>

>

>~*~CHAT TIME:~*~

>MON & THURS

>Day Eastern 4 PM, Central 3 PM, Mt 2 PM Pacific 1 PM

>Night Eastern 9 Pm, Central 8 Pm, Mt 7 PM Pacific 6 PM

>WHERE: /chat/

>

>

>VIP

>If there is a problem on this list notify.

>Co-Moderator

>The_List_Owner@...

>

>

>Add or view links about fibro/CFS.

>http://www.onelist.com/links/

>

>TO unsubscribe.

>Go to: http://www.onelist.com/ to this list and unsub from it.

>

>

>

>

>

[Guest guest]

>> " I've done the dietary changes-I've cut out beef, I've increased my

fruits and veggies. "

I did just the opposite, increased my protein intake. I kept the fruits

and veggies but got rid of the wheats and rice and potatoes, (except an

occassional fry)

** , Stinky's caretaker**

**Now is the time of your life to have

the time of your life**

( ADD Pride week is coming)

[Guest guest]

Hello and welcome to the group,

I used to have awful chest pains. I went through a battery of tests over

about 2 years. The docs thought it was my heart, etc. I am young, 23 yo, so

it was scary. They finally concluded that with the Fibro/CFS my chest

muscles were the cause of the pain. Over the last year the pains have gone

away. I used to take Ibuprofen when I had a bad day and I would rest.

Usually the pains meant I was tired.

I hope this helps you.

Martyn Atkins wrote:

> Hi there,

>

> I am new to this group. I was (unoficially) diagnosed with CFS way

> back in 1991 (when I was 21). After 5-6 years of very bad health

> (chronic breathing problems, nausea, muscle fatigue, tiredness and

> depression) I gradually recovered to a degree where I could work and

> even cycle again (a real passion of mine). I was still left with a

> legacy of palpitations and stomach problems.

>

> Recently I have been getting worse again (a period of prolonged

> stress seems to have precipitated a relapse). My main problem at the

> moment is that I sometimes have a lot of trouble breathing and feel

> suffocated for hours at a time - my chest muscles ache all over and

> also my legs have started to ache again especially in the calfs.

>

> I am hoping that I can recover from this relapse relatively quickly

> and that I can continiue to function at work.

>

> A little about myself (just for background). I work in IT (I am a

> Java programmer) and have been working for the last 3 years

> permanently. I have a degree in Chemistry from Exeter University

> (Class of '91). I live in Torpoint, Cornwall and have a cat called

> Sylvester. My girlfriend is called (but that's all going pear-

> shaped at the moment which isn't helping much).

>

> Anyway, that's me

> Hope I can contribute something to the group

> Best wishes to you all

> Martyn

>

>

>

> ~*~CHAT TIME:~*~

> MON & THURS

> Day Eastern 4 PM, Central 3 PM, Mt 2 PM Pacific 1 PM

> Night Eastern 9 Pm, Central 8 Pm, Mt 7 PM Pacific 6 PM

> WHERE: /chat/

>

> VIP

> If there is a problem on this list notify.

> Co-Moderator

> The_List_Owner@...

>

> Add or view links about fibro/CFS.

> http://www.onelist.com/links/

>

> TO unsubscribe.

> Go to: http://www.onelist.com/ to this list and unsub from it.

[Guest guest]

welcome martyn..i hope you can also find info and help with the

group.... duane...

Martyn Atkins wrote:

> Hi there,

>

> I am new to this group. I was (unoficially) diagnosed with CFS way

> back in 1991 (when I was 21). After 5-6 years of very bad health

> (chronic breathing problems, nausea, muscle fatigue, tiredness and

> depression) I gradually recovered to a degree where I could work and

> even cycle again (a real passion of mine). I was still left with a

> legacy of palpitations and stomach problems.

>

> Recently I have been getting worse again (a period of prolonged

> stress seems to have precipitated a relapse). My main problem at the

> moment is that I sometimes have a lot of trouble breathing and feel

> suffocated for hours at a time - my chest muscles ache all over and

> also my legs have started to ache again especially in the calfs.

>

> I am hoping that I can recover from this relapse relatively quickly

> and that I can continiue to function at work.

>

> A little about myself (just for background). I work in IT (I am a

> Java programmer) and have been working for the last 3 years

> permanently. I have a degree in Chemistry from Exeter University

> (Class of '91). I live in Torpoint, Cornwall and have a cat called

> Sylvester. My girlfriend is called (but that's all going pear-

> shaped at the moment which isn't helping much).

>

> Anyway, that's me

> Hope I can contribute something to the group

> Best wishes to you all

> Martyn

>

>

>

> ~*~CHAT TIME:~*~

> MON & THURS

> Day Eastern 4 PM, Central 3 PM, Mt 2 PM Pacific 1 PM

> Night Eastern 9 Pm, Central 8 Pm, Mt 7 PM Pacific 6 PM

> WHERE: /chat/

>

> VIP

> If there is a problem on this list notify.

> Co-Moderator

> The_List_Owner@...

>

> Add or view links about fibro/CFS.

> http://www.onelist.com/links/

>

> TO unsubscribe.

> Go to: http://www.onelist.com/ to this list and unsub from it.

[Guest guest]

Pam:

Got you message. Thought I was automatically switched over to the new one

and deleted from the old.

What to do?

Moller

[Guest guest]

I got 2 posts. I'm replying to both.

Carol L.

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

>If there is anyone subscribed to this list please reply to this

message. We

>have all moved to a new list as of August 5, 2000 and if you'd like to

join

>us I have the instructions. There are over 200 people subscribed at

the new

>location.

>

>Regards,

>Pam

>

[Guest guest]

Hi ,

I thought everyone was too. I don't know what happened. I can ask

about it tomorrow. You can unsubscribe yourself from the old list if you're

bothered by the double messages.

Regards,

Pam

Re: Hello

> Pam:

>

> Got you message. Thought I was automatically switched over to the new one

> and deleted from the old.

>

> What to do?

>

> Moller

>

>