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Re: Hi Amy

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Hi Debbie,

Thank you for sharing such an inspiring story :) I love it when people

" ramble on " about how it is for them, living with arthritis. Sometimes

arthritis manages to take 'center stage' for a while but it really is

only a small part of a full life. Thanks for your encouraging words :)

Take care,

Georgina

The Schuh Family wrote:

> Hi Amy,

> The wonderful word you must always remember is REMISSION! I was diagnosed at

> age 12 with Poly JRA with a systemic onset. and a year later it went away

> like it had never started. 2 years after that I began spiking a temp of 103

> every afternoon at 1pm <my english teacher swore I was just trying to get

> out of her class>and after a week of it, I was back in the hospital. All of

> my teen years were pretty much a blur of hospitals and rehab but then during

> my senior year I went back into remission, had both hips replaced and things

> became normal again! I have never been a very passive person so I was

> always in the middle of my medical care, I think it is very important for

> children to feel like they have some control over the decions or they are

> more likely to get depressed and give up fighting.

> I was in remission from 18-28 and during that time I went to college, did a

> lot of public speaking at support groups and medical conferences all over

> the country. was on TV more times than I can count and made a film for the

> arthritis foundation on day to day activates of children with JRA. The

> damage gets done during childhood growth spurs and she will always have to

> deal with those limitations, but the pain does go away.

> At 28 I stuttered back with flare ups, but it usually was just 1 day a month

> <the day before my period when the hormones drop> I went in remission

> through all 3 pregnancies, had c-sections to avoid the pushing in child

> birth and with the exception of #3 everything went fine with changing diaper

> etc <we had to adapt things a little to accommodate my limitations but

> nothing major> When Wyatt was born 2 years ago it through me into a big time

> flare and I now have a nanny to take care of kids and house.

> The good news is that if she sets her mind to it, she can do most anything.

> I have lived alone, been a divorced mom on social security and taken care of

> my daughter alone <first husband couldn't handle it when I started having

> another flare> traveled to Alaska <scared my parents to death but I was

> determined to prove I could> and even met and married a wonderful man who

> married me 3 months after my 2nd and 3rd hip replacements. I guess what I am

> trying to say is that my family had convinced me that no man would ever want

> to marry someone with so many medical problems and that they would have to

> " take care " of me forever, but they were wrong. Arthritis isn't a death

> sentence, it just means you have to find alternate routes to get where you

> want to go (c: Boy am I rambling or what. I guess most importantly the

> thing to remember is keep moving, do the therapy and try not to focus on

> what you can't do, look for what she can do!

>

> Hugs,

> Debbie

>

> The Schuh Family

> Dan, Debbie, Dottie, Kody and Wyatt

> http://members.tripod.com/BudgetScrapbooking/

> Debbie,

>

> Welcome! I'm also a mother of three kids (all born in 34 months). =)

> My oldest was diagnosed in Dec. 98 with Pauci. Now she has progressed to

> poly-jra. I'm so glad to hear you have children. I often wonder what is in

> store for her in her adult life (kids, jobs and so on...) with her

> arthritis. Anyway, it is encouraging to see that you have done all the

> " normal " things adults do. =)

>

> God bless you,

> Amy

> Mother to 3 1/2 years old (poly-jra)

> Mother to Andy 2 years old

> Mother to Maddie 8

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  • 5 years later...

Amber-

THanks for the update!

Sounds like he's improving! Although giggling is from

the yeast too-that should improve as well.

Go and rest...you must be exhausted. I hope you and

your son get some good sleep soon!

Amy

--- kennetheriklucy <eislerfamily@...> wrote:

> Hi Amy- update. Today is day #3 on the

> Nystatin, and he isn't hot

> today, but his cheeks are still fairly red. And he

> is awfully giggly.

> He's a lot more alert, and awake. It hasn't helped

> with his sleeping at

> all yet, I really hope it does. For a kid thats had

> about 5 hours of

> sleep in the last week, he's pretty awake. Amber.

>

>

>

>

__________________________________________________

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Amber, are you doing any sort of antiyeast diet? I have not done this

for my son but his yeast is not responding to anything right now. I

hate to even consider it.

I added ThreeLac to my son's Nystatin regimen today out of

desparation. So far, mainly side effects from the B vitamins and

lemon flavorings, though.

Amy

>

> Hi Amy- update. Today is day #3 on the Nystatin, and he isn't

hot

> today, but his cheeks are still fairly red. And he is awfully

giggly.

> He's a lot more alert, and awake. It hasn't helped with his sleeping

at

> all yet, I really hope it does. For a kid thats had about 5 hours of

> sleep in the last week, he's pretty awake. Amber.

>

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The only thing that wouldn't feed yeast for my son on that list is

the chicken. I think it must be different for each child; for my

daughter there are more foods she can eat, that won't cause yeast.

I am thinking about taking him back down to just chicken and

something, but I can't come up with a grain that doesn't feed

yeast...is there one that's better than another? (He can't tolerate

potatoes, rice, legumes, or the simpler-starch flours.)

Yeast is like our #1 enemy right now, and we're losing ground

daily....4 more days of winter break.....

Congratulations on the improvements!!! It's so much work but worth

it.

Amy

> > >

> > > Hi Amy- update. Today is day #3 on the Nystatin, and he

isn't

> > hot

> > > today, but his cheeks are still fairly red. And he is awfully

> > giggly.

> > > He's a lot more alert, and awake. It hasn't helped with his

sleeping

> > at

> > > all yet, I really hope it does. For a kid thats had about 5

hours of

> > > sleep in the last week, he's pretty awake. Amber.

> > >

> >

> >

> >

> >

> >

> >

> >

> >

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