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Mandy, I was so depressed when I was in the hospital and first diagnosed

that I couldn't even function. I'm glad you are feeling mentally better... I

wish something would stop the aches for you.

What is it with Social Security 'punishing' you for working? It doesn't make

sense, does it. It's the same up here in Canada with Social Assistance

(which I'm on)... it doesn't even come CLOSE to paying my bills, yet I'm

being given less because I moved in with family.

Chin up, good luck.

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What a small world. I used to work someone from Snohomish. We still

stay in contact, working for the same company. Her name is Carol

Wilkerson.

Tom

>

> Remember that person with Still's disease that heard about us from my

> husbands Ex. Well, she called us tonight. She is trying to get into

the

> group. I sent her the address at Yahoo.

> Anyway, she is having trouble getting in and is thirsting for info.

So

> I do have her address, so without breaking confidentiality, you

> experienced puter people, help.

> We all talked for a good 45 minutes. Was great! Ah and there is

another

> person with Still's that grew up in our same area. We are going to try

> to get together. We both are from Seattle and the Edmonds area.

> (Growing up, as we live in the lovely podunk town of Snohomish now)

> Love, Steph

>

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What a small world. I used to work someone from Snohomish. We still

stay in contact, working for the same company. Her name is Carol

Wilkerson.

Tom

>

> Remember that person with Still's disease that heard about us from my

> husbands Ex. Well, she called us tonight. She is trying to get into

the

> group. I sent her the address at Yahoo.

> Anyway, she is having trouble getting in and is thirsting for info.

So

> I do have her address, so without breaking confidentiality, you

> experienced puter people, help.

> We all talked for a good 45 minutes. Was great! Ah and there is

another

> person with Still's that grew up in our same area. We are going to try

> to get together. We both are from Seattle and the Edmonds area.

> (Growing up, as we live in the lovely podunk town of Snohomish now)

> Love, Steph

>

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What a small world. I used to work someone from Snohomish. We still

stay in contact, working for the same company. Her name is Carol

Wilkerson.

Tom

>

> Remember that person with Still's disease that heard about us from my

> husbands Ex. Well, she called us tonight. She is trying to get into

the

> group. I sent her the address at Yahoo.

> Anyway, she is having trouble getting in and is thirsting for info.

So

> I do have her address, so without breaking confidentiality, you

> experienced puter people, help.

> We all talked for a good 45 minutes. Was great! Ah and there is

another

> person with Still's that grew up in our same area. We are going to try

> to get together. We both are from Seattle and the Edmonds area.

> (Growing up, as we live in the lovely podunk town of Snohomish now)

> Love, Steph

>

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Mandy

  Hey gal man do I know how not wanting to talk to any one feels same as well

the family and friends deal been there done that and not a good feeling . any

hoot I wish you the very very best I mean that .

 about SSI and working part time I would talk to a ssi Lawyer and find out that

way as I know there is a dollar amount that you can not make over but under that

I believe you can get ssi and if maybe cutting back hours a bit would help to

get it at lest them may be by getting Medicare with it's parts would be cheaper

then your insurance but then again com-pair your coverage to Medicare and see

what is best and go that way as in the long run right now you may be better off

they way you are working part time and the coverage you have but then again may

be your might not be . I know that I would have been lost with out a ssi lawyer

my self and I would have given up long time ago . as it was it was almost three

years from when i field to when i finally was given the okay you can get ssi and

talk about a log three years . it was worth it in my case . now others some get

it in the first try some between the first and were i did . now days it seams

ssi is

becoming a bit more knowledgeable about stills and fibo then they were even 5

years ago. even if i was turned down a year ago I would go talk to a lawyer and

take all the records i could and info I have and see what they say now never

know and what the worse thing they can say no? if they do what have you lost

nothing but if they say yes well there ya go a chance i feel worth tacking any

hoot worth a try  as who knows they may have raised the monthly income you can

make and you may now be under that or your med cost my be able to cover some of

the over part just never know but the lawyers know how it works and that is

there job because if they do not win for you they do not get paid so they are

not going to take it and tell you that you have a chance unless they feel you do

because if they do there wasting there time and money not yours

 any hows hugs to ya and know you have family and friends here depressed sick or

happy as hell and feeling fine as toady frog we all still care and are here for

you and most of us have been there a  time or to if not more

hugs

 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

-----

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

a government and its agents are under no general duty to provide public

services, such as police protection, to any particular individual citizen...

-- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181)

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Mandy

  Hey gal man do I know how not wanting to talk to any one feels same as well

the family and friends deal been there done that and not a good feeling . any

hoot I wish you the very very best I mean that .

 about SSI and working part time I would talk to a ssi Lawyer and find out that

way as I know there is a dollar amount that you can not make over but under that

I believe you can get ssi and if maybe cutting back hours a bit would help to

get it at lest them may be by getting Medicare with it's parts would be cheaper

then your insurance but then again com-pair your coverage to Medicare and see

what is best and go that way as in the long run right now you may be better off

they way you are working part time and the coverage you have but then again may

be your might not be . I know that I would have been lost with out a ssi lawyer

my self and I would have given up long time ago . as it was it was almost three

years from when i field to when i finally was given the okay you can get ssi and

talk about a log three years . it was worth it in my case . now others some get

it in the first try some between the first and were i did . now days it seams

ssi is

becoming a bit more knowledgeable about stills and fibo then they were even 5

years ago. even if i was turned down a year ago I would go talk to a lawyer and

take all the records i could and info I have and see what they say now never

know and what the worse thing they can say no? if they do what have you lost

nothing but if they say yes well there ya go a chance i feel worth tacking any

hoot worth a try  as who knows they may have raised the monthly income you can

make and you may now be under that or your med cost my be able to cover some of

the over part just never know but the lawyers know how it works and that is

there job because if they do not win for you they do not get paid so they are

not going to take it and tell you that you have a chance unless they feel you do

because if they do there wasting there time and money not yours

 any hows hugs to ya and know you have family and friends here depressed sick or

happy as hell and feeling fine as toady frog we all still care and are here for

you and most of us have been there a  time or to if not more

hugs

 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

-----

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

a government and its agents are under no general duty to provide public

services, such as police protection, to any particular individual citizen...

-- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181)

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  • 4 weeks later...

I just got a E-mail back form 's mom. And she is just one smart woman

trying to deal with this too. I wish I was her. Maybe my son could have had a

better life. Cause all I can give him is love. i guess i was a little

bitter thanks for being here moms char

**************

Looking for simple

solutions to your real-life financial challenges? Check out WalletPop for the

latest

news and information, tips and calculators.

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We never used prednisone because our son's fevers were already only 2 weeks

apart and it makes the fevers come sooner and sooner.  I have read messages from

other members who have tried prednisone and noticed it caused 'rages' in their

children. 

 

We were referred to a rheumatologist who prescribed liquid naproxen for Tyler. 

He took it every day in 2 doses 12 hours apart.  For him it dropped his fevers

from 105-106 down to 102 and lessened his stomach discomfort (Motrin caused

vomitting often).  The rheumatologist said in some children it stops the fevers,

but it did not work that way for Tyler.  After about a year on the naproxen he

started having more severe episodes again.  He began having throat involvement

with large painful glands.  We opted for a T & A this last August 5th.  So far he

has not had a fever, and I am hoping it will be successful in the long run for

him. 

 

I am sorry to hear about your son.  It must be difficult dealing with school and

his fevering.  There is a study that was done on the success of T & A for children

with - it is in the links if you would be considering this route. 

 

Pruden

Tyler Pruden 2yr 9mo old fevering since 3 months - T & A 8/5/08 fever free so far

Dylan Pruden 6 months old

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Hi Lynn,

I'm not from the Rochester area but am from Redwood Falls, MN

(southwest part of the state). Who was your ID dr.? I took my

daughter to see Dr. Robein at the U of MN. Payton doesn't have an

official diagnosis yet but we are working on it. We haven't tried

prednisone yet. Payton actually hasn't had an episode since we went

to see the Dr. during the end of August (her episodes are 6-8 weeks

apart). I have been debating on using prednisone with her next

episode.

Suzi

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Lynn,

Couple of thoughts on the Prednisone.

1) For us, the fevers came much closer together - from an average of 35

days down to 10-12 days.

2) We found we really needed to wait until the fever got to about

102-103 (her spikes were always in the 105-106+ range). If we dosed too

soon, it did not stop the fever.

3) We started with a 2 mg/kg dose (please see another posting I sent on

Prednisone dosage calculator). We found that a .6 mg/kg dose was all

that was needed, but that was after a lot of trial and error

4) Dani had a very aggressive reaction to the Prednisone - it usually

lasted 2-3 days afterwards. It seemed to get worse with each episode,

until we reduced the dosage to .6 mg/kg (for a 32-35 pound child - about

3 mls, vs. our original dose of 2 Teaspoons (i.e., 10 mls).)

We tried Cimetidine with no luck. We got to the point that we were

unwilling to put so much medicine in such a little body if a T & A would

help. She needed a new ear tube anyway, so we just did the surgeries at

the same time.

She has been a very healthy and very happy little girl ever since then.

Tonight, I actually ran across my spreadsheet of episodes that I took to

her last Immunologist appointment and chuckled - we just don't even

worry about it any longer. :)

Please refer to the study for T & A and look up Licameli online. There is

more and more research, and so many parents on this board have had

success. There are a few cases where it hasn't worked, or there have

been a few episodes and/or symptoms without the fever. But for us -

we've had 10.5 months fever free!

Welcome.

Ginger - Atlanta, GA

Daughter - le, 3 years old

(fevering since 7 months, diagnosed at 15 months, T & A on

12/11/07, Fever-free since 11/16/07)

Son - Jay, 17 months old

-----------------------------------------

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information that is intended only for use by the

named recipient. If you are not the named recipient,

any disclosure, dissemination, or action based on

the contents of this message is prohibited. In such

case please notify us and destroy and delete all

copies of this transmission. Thank you.

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Lynn,

I am from the Minneapolis area. My son had his tonsils taken out by Dr.

Lander at Minneapolis Children's Hospital. He works for

Pediatric ENT Associates located next to Children's Hospital in

Minneapolis. He has treated many patients. The office number is

612) 874-1292. My son had his T & A in July and has been fever free

since...Only time will tell. For now... we are cherishing every healthy

day since the T & A. Dr. Lander is very knowledgeable about . I

would reccomend setting up a consultation with him.

Amy- Mom to -Age3-T & A in July 08-Doing great :)

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  • 4 weeks later...

Hi Jade, I'm Tom...38 with type 3. Welcome!

-------------- Original message ----------------------

From: Jade Theriault <radiofinger@...>

>

>

>

>

> Hello, my name is Jade and I'm 14 with SMA 2. My aunt referred me here so I

> have no idea what I'm doing lol. So...HI!!!!

>

>

>

>

>

>

>

>

>

> Jade :)

>

>

>

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Hi Jade!

I'm Amy, 29, type I/II, and mama of two kiddos age 5 and almost 3.

I'm a latte addict, love music, and being outside.

amy

On Oct 30, 2008, at 7:52 PM, Jade Theriault wrote:

>

>

>

> Hello, my name is Jade and I'm 14 with SMA 2. My aunt referred me

> here so I have no idea what I'm doing lol. So...HI!!!!

>

> Jade :)

>

>

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dang! that was a fast response! i thought itd take days!

Jade :)

Re: hi

Hi Jade!

I'm Amy, 29, type I/II, and mama of two kiddos age 5 and almost 3.

I'm a latte addict, love music, and being outside.

amy

On Oct 30, 2008, at 7:52 PM, Jade Theriault wrote:

>

>

>

> Hello, my name is Jade and I'm 14 with SMA 2. My aunt referred me

> here so I have no idea what I'm doing lol. So...HI!!!!

>

> Jade :)

>

>

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thank you!

Jade :)

Re: hi

Hi Jade, I'm Tom...38 with type 3. Welcome!

-------------- Original message ----------------------

From: Jade Theriault <radiofinger@...>

>

>

>

>

> Hello, my name is Jade and I'm 14 with SMA 2. My aunt referred me here so I

> have no idea what I'm doing lol. So...HI!!!!

>

>

>

>

>

>

>

>

>

> Jade :)

>

>

>

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Hi Jade!

I'm 29, married, mommy to a beautiful baby girl, and a Senior Analyst for

Hewlett Packard.

Welcome!

 

Milinovich, SMA Type I

Wife to , Mommy to - 18 Months Old!

http://www.myspace.com/kindrana 

http://s174.photobucket.com/albums/w107/boramir/?start=0

 

________________________________

From: Jade Theriault <radiofinger@...>

Sent: Thursday, October 30, 2008 7:52:22 PM

Subject: hi

Hello, my name is Jade and I'm 14 with SMA 2. My aunt referred me here so I have

no idea what I'm doing lol. So...HI!!!!

Jade :)

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hey jade,

your aunt is soooooooooo bossy ;-)

i am 45 and have sma 2, and live with one poodle, two hens, and two men in

england

linda

2008/10/31 Jade Theriault <radiofinger@...>

>

> nice to meet you!

>

> Jade :)

>

>

> hi

>

> Hello, my name is Jade and I'm 14 with SMA 2. My aunt referred me here so I

> have no idea what I'm doing lol. So...HI!!!!

>

> Jade :)

>

>

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Hey, Jade! I'm glad you logged on. This is a great group of people

from all over the place. As for calling me bossy...she's just

sore cuz I kick her butt more often than not in Scrabble. ;-) I think

you'll find this to be a good place to ask questions about growing into

adulthood, building a career, raising a family...all with a

disability. It's helped me a lot and I've made some good friends.

Love you...now do your homework before I get in trouble with your dad

for distracting you! ;-)

>

> hey jade,

> your aunt is soooooooooo bossy ;-)

> i am 45 and have sma 2, and live with one poodle, two hens, and two

men in

> england

> linda

>

>

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ACTUALLY, i think i win more often!

2008/10/31 Alana <alrt@...>

> Hey, Jade! I'm glad you logged on. This is a great group of people

> from all over the place. As for calling me bossy...she's just

> sore cuz I kick her butt more often than not in Scrabble. ;-) I think

> you'll find this to be a good place to ask questions about growing into

> adulthood, building a career, raising a family...all with a

> disability. It's helped me a lot and I've made some good friends.

>

> Love you...now do your homework before I get in trouble with your dad

> for distracting you! ;-)

>

>

>

> >

> > hey jade,

> > your aunt is soooooooooo bossy ;-)

> > i am 45 and have sma 2, and live with one poodle, two hens, and two

> men in

> > england

> > linda

> >

> >

>

>

>

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Do you guys play scrabble online? I want to play! :-)

On 10/30/08 8:46 PM, " Alana " <alrt@...> wrote:

> Hey, Jade! I'm glad you logged on. This is a great group of people

> from all over the place. As for calling me bossy...she's just

> sore cuz I kick her butt more often than not in Scrabble. ;-) I think

> you'll find this to be a good place to ask questions about growing into

> adulthood, building a career, raising a family...all with a

> disability. It's helped me a lot and I've made some good friends.

>

> Love you...now do your homework before I get in trouble with your dad

> for distracting you! ;-)

>

>

>> >

>> > hey jade,

>> > your aunt is soooooooooo bossy ;-)

>> > i am 45 and have sma 2, and live with one poodle, two hens, and two

> men in

>> > england

>> > linda

>> >

>> >

>

>

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i still cant go to the group

Jade :)

Re: hi

Hey, Jade! I'm glad you logged on. This is a great group of people

from all over the place. As for calling me bossy...she's just

sore cuz I kick her butt more often than not in Scrabble. ;-) I think

you'll find this to be a good place to ask questions about growing into

adulthood, building a career, raising a family...all with a

disability. It's helped me a lot and I've made some good friends.

Love you...now do your homework before I get in trouble with your dad

for distracting you! ;-)

>

> hey jade,

> your aunt is soooooooooo bossy ;-)

> i am 45 and have sma 2, and live with one poodle, two hens, and two

men in

> england

> linda

>

>

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