Alesha

[Guest guest]

Alesha,

There is a Shriners in Texas,,but its in Houston,,which is about 6

hours away. Right now that isn't really an option. I have another

appointment with the Genetics Dr,on June 14th,,and hopefully she can give

us some kind of idea what to do about Logan's pain. It is kinda hard to

find someone that is familier with Ehlers Danlos syndrome,,but we just

have to keep trying.

Kim and Logan

On Sat, 29 May 2004 08:22:18 -0700 (PDT) Alesha G <alesha1003@...>

writes:

> We use to live in Dallas but now live in Missouri. Our daughter

> goes to Shriners in St. Louis. I believe they have a

> Shriners in Texas, maybe you should check into it. Hang in there.

> If your not happy with the dx stay on them until they give you the

> info you are looking for.

> Good Luck

> Alesha

> 's mom

>

> Kim D <smithkim@...> wrote:

> Marguerite,,,my son goes to ish Rite in Texas,also ! We have

> not

> been happy with the treatment he has received there He presented

> with

> an ASO Titre of 1650,,so they immediatly thought that he had

> reactive

> arthritis,,and they have stubbornly stuck to that dx ever since !

> Anyway,,,don't even get me started on all that,,I was just curious

> ,,,where do ya'll live? We are in Denton,,northeast of Dallas. I

> would

> love to get together and meet and you. Have you ever been

> invited

> to the fishing tournament,,that Lancaster Medical center puts on ?

> Maybe

> we can meet there,this summer.

>

> Kim and Logan

>

> ________________________________________________________________

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>

[Guest guest]

Your obviously not in that group. Its kind of like I tell my children....if

your not the one that what I'm saying applies to then don't worry about what

other people say. But isn't it nice that people are actually talking about

something else. It should be SO nice to meet all of you at AJAO this year. I'm

looking forward to it.

HARRY SKIDMORE <h.skidmore@...> wrote:

Alesha,

I am sorry that if by posting about how my daughter has been doing and asking

questions about what other kids has gone through this has been annoying to you.

I really don't give a S*** about what you think about my child or myself as you

know nothing about oer lifes or situation. My daughter at age 5 has a great

grasp of everything that is done to her and why it is done. As far as having a

grasp on reality I personally think that those of us that kids don't have it

that easy have a better grasp on reality than those thats disease isn't that

bad. We know how bad it can get and also that every step forward is a great

accomplishment. Having JRA myself as a child, I understand what my daughter is

going through with her pain and also the frustration of not being able to do all

the things that you want to. As far as " playing the system goes " , show me a

child who would rather not be able to go to dance lessons that they love, play

baseball, and do many other things that they used to do

because they no longer have the stamina for it. As for shattering anyones

bubble, I hope and pray daily that goes into REMISSION as soon as

possible. Do you think that those of us with kids that have a harder time ENJOY

having their kids look and feel like CRAP for extended periods of time? My

daughter was pulled from school for 3 weeks after having pneumonia to try and

build up her resistance. Do you think that she " PLAYED THE SYSTEM " to get a

three week vacation that included alot of naps, no friends around, and no

outside time?? Where do you get off judging the people here who have been

nothing but helpful when advice was needed?

Emilie

[Guest guest]

As a mother of 8 I would say you do have more practice.. How do you manage with

8 kids? Two drive me nuts, but I am also a Emergency Medical Technican-

Intermediate level and a firefighter, I volunteer for 2 rescue squads and a fire

department/first response unit.. so I have a feeling that I have a little more

experience at dealing with sick people than you do.. The fact that you seem to

believe that you can judge us and our kids is what annoys me.. You do have your

rights to you opinion, as we do to ours and respect is a two way street

Re: Alesha

Your obviously not in that group. Its kind of like I tell my children....if

your not the one that what I'm saying applies to then don't worry about what

other people say. But isn't it nice that people are actually talking about

something else. It should be SO nice to meet all of you at AJAO this year. I'm

looking forward to it.

HARRY SKIDMORE <h.skidmore@...> wrote:

Alesha,

I am sorry that if by posting about how my daughter has been doing and

asking questions about what other kids has gone through this has been annoying

to you. I really don't give a S*** about what you think about my child or

myself as you know nothing about oer lifes or situation. My daughter at age 5

has a great grasp of everything that is done to her and why it is done. As far

as having a grasp on reality I personally think that those of us that kids don't

have it that easy have a better grasp on reality than those thats disease isn't

that bad. We know how bad it can get and also that every step forward is a

great accomplishment. Having JRA myself as a child, I understand what my

daughter is going through with her pain and also the frustration of not being

able to do all the things that you want to. As far as " playing the system

goes " , show me a child who would rather not be able to go to dance lessons that

they love, play baseball, and do many other things that they used to

do

because they no longer have the stamina for it. As for shattering anyones

bubble, I hope and pray daily that goes into REMISSION as soon as

possible. Do you think that those of us with kids that have a harder time ENJOY

having their kids look and feel like CRAP for extended periods of time? My

daughter was pulled from school for 3 weeks after having pneumonia to try and

build up her resistance. Do you think that she " PLAYED THE SYSTEM " to get a

three week vacation that included alot of naps, no friends around, and no

outside time?? Where do you get off judging the people here who have been

nothing but helpful when advice was needed?

Emilie

[Guest guest]

Well like I did say my comments where to THUNDERCATSMOM. And I am nuts by the

way.

HARRY SKIDMORE <h.skidmore@...> wrote:As a mother of 8 I would say

you do have more practice.. How do you manage with 8 kids? Two drive me nuts,

but I am also a Emergency Medical Technican- Intermediate level and a

firefighter, I volunteer for 2 rescue squads and a fire department/first

response unit.. so I have a feeling that I have a little more experience at

dealing with sick people than you do.. The fact that you seem to believe that

you can judge us and our kids is what annoys me.. You do have your rights to you

opinion, as we do to ours and respect is a two way street

Re: Alesha

Your obviously not in that group. Its kind of like I tell my children....if

your not the one that what I'm saying applies to then don't worry about what

other people say. But isn't it nice that people are actually talking about

something else. It should be SO nice to meet all of you at AJAO this year. I'm

looking forward to it.

HARRY SKIDMORE <h.skidmore@...> wrote:

Alesha,

I am sorry that if by posting about how my daughter has been doing and

asking questions about what other kids has gone through this has been annoying

to you. I really don't give a S*** about what you think about my child or

myself as you know nothing about oer lifes or situation. My daughter at age 5

has a great grasp of everything that is done to her and why it is done. As far

as having a grasp on reality I personally think that those of us that kids don't

have it that easy have a better grasp on reality than those thats disease isn't

that bad. We know how bad it can get and also that every step forward is a

great accomplishment. Having JRA myself as a child, I understand what my

daughter is going through with her pain and also the frustration of not being

able to do all the things that you want to. As far as " playing the system

goes " , show me a child who would rather not be able to go to dance lessons that

they love, play baseball, and do many other things that they used to

do

because they no longer have the stamina for it. As for shattering anyones

bubble, I hope and pray daily that goes into REMISSION as soon as

possible. Do you think that those of us with kids that have a harder time ENJOY

having their kids look and feel like CRAP for extended periods of time? My

daughter was pulled from school for 3 weeks after having pneumonia to try and

build up her resistance. Do you think that she " PLAYED THE SYSTEM " to get a

three week vacation that included alot of naps, no friends around, and no

outside time?? Where do you get off judging the people here who have been

nothing but helpful when advice was needed?

Emilie

[Guest guest]

Thats great that you can do all those things, bath children, laundrey, cook

dinner blah blah blah, as a mother of 8 I have learned to do all those things

and be on the internet at the same time. This is the last time I will post

concering all of this because its 6:20 in the morning I've been up since 5 and

now I have to go be a mommy for the day.

I am in no way shape or form taking anything away from the kids and their

struggles. And I do realize that is one of the lucky ones. But one

thing I think alot of people don't realize in this room is that ALL of us are

lucky, wheather your child has moderate or severe JRA. Things could be so much

worse. Type 1 Diabetic could KILL your child before you could make it to the

hospital. I consider myelf lucky that my child has JRA because the list of

things that she was tested for was frightening, as I'm sure it has been for

everyone else. But the point is is that we have our children, no matter how

hard you think there life has become because of this disease, we have our kids.

My granddaughter was born in Dec 2003 and died at birth, I set there and held

and sing to a dead baby for 5 hours before the hospital said they had to take

her lifeless little body so that the funeral home could pick her up. Then I

stood there as they lowered her tiny little casket, that my son carried in his

lap, into a snow covered grave. I would have taken that little girl anyway God

gave her to our family and with what ever diablity she had I would have thanked

god every day for the opportunity for her to be in our lives.

I feel like, and of course I must insert this disclaimer because it is only my

feelings, that the kids with JRA are the lucky ones, and the parents of the kids

with this disease are blessed to have this disease to deal with, it could be so

much worse. That more time is spent on the negitives of this disease instead of

the positives of the childs life.

I'm sure at this point everyone would like a apology for me offending them but

ITS NOT GOING TO HAPPEN. But I am sorry that everyone doesn't realize how truly

lucky they are that God has chosen their kids to have this disease. My child

will make a difference for the next generation of kids with this disease, will

you give your kids the opportunity. (Most kids are only limited by their

parents limitations, not theirs)

Alesha out

MG9393@... wrote:

Alesha,

The funny thing about a group is, you CHOSE to be on it and you can CHOSE

not to be on it. If this group is not serving your needs, chose to be off it.

This is a PUBLIC internet group, anyone can read and respond to any post on this

list, that is why it is called public. But by being public, you can agree or

disagree with what is being said on it. And everyone has a right to voice that,

including you. But what no one on this group has a right to do is to forget why

we are here, because we have children who have been affected by a horrible

disease(whether it be mild or severe)and I for one am glad that some of the

people are fortunate enough to have their children treated with only one drug or

to be considered mild. But unfortunately not all of these children are that

lucky, and Alesha your child is lucky. My son has been battling this disease for

11 years, we have not been so lucky, but I will NEVER under value his effort and

struggle. And you have no right to either!!

!!When I watch my 12 year old son, struggle to get out of bed and have his

fingers so swollen he writes like a first grader, AND NEVER stop smiling and

trying. Your opinion of wether I or anyone on this group am whining or not DOES

NOT matter. Instead of belittling people on this group that are struggling a

struggle that you are not, count your blessing that your not, and try offering

support not harsh words!!

As far as people having too much time on their hands, while you were posting 6

times, from 4:20 to 7:45. I was cooking supper, bathing children, helping with

homework, laundry, vacuming and doing Foundation work. Notice I only have time

to post once, after my children are in bed!!

Missy

Re: Alesha

>

>

> Your obviously not in that group. Its kind of like I tell my

> children....if your not the one that what I'm saying applies to

> then don't worry about what other people say. But isn't it nice

> that people are actually talking about something else. It should

> be SO nice to meet all of you at AJAO this year. I'm looking

> forward to it.

>

>

> HARRY SKIDMORE <h.skidmore@...> wrote:

> Alesha,

>

> I am sorry that if by posting about how my daughter has been

> doing and asking questions about what other kids has gone through

> this has been annoying to you. I really don't give a S*** about

> what you think about my child or myself as you know nothing about

> oer lifes or situation. My daughter at age 5 has a great grasp of

> everything that is done to her and why it is done. As far as

> having a grasp on reality I personally think that those of us that

> kids don't have it that easy have a better grasp on reality than

> those thats disease isn't that bad. We know how bad it can get

> and also that every step forward is a great accomplishment. Having

> JRA myself as a child, I understand what my daughter is going

> through with her pain and also the frustration of not being able

> to do all the things that you want to. As far as " playing the

> system goes " , show me a child who would rather not be able to go

> to dance lessons that they love, play baseball, and do many other

> things that they used t

> do

> because they no longer have the stamina for it. As for

> shattering anyones bubble, I hope and pray daily that goes

> into REMISSION as soon as possible. Do you think that those of us

> with kids that have a harder time ENJOY having their kids look and

> feel like CRAP for extended periods of time? My daughter was

> pulled from school for 3 weeks after having pneumonia to try and

> build up her resistance. Do you think that she " PLAYED THE

> SYSTEM " to get a three week vacation that included alot of naps,

> no friends around, and no outside time?? Where do you get off

> judging the people here who have been nothing but helpful when

> advice was needed?

>

> Emilie

>

>

>

>