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Hi Jannabelle my name is Donna and I am 40 (soon to be 41 . Sept 28) and I

have had JRA since age 4. I am glad you have joined us and there are several

adults who have grown up with JRA on here who will chime in. I have yet in all

these years to find the fix that helps my pains. I use rather bizarre

techniques. I use avoidance when I can and distraction that sometimes keep my

mind

away from the pain. When all else fails I try lying to myself and saying it

don't hurt. LOL. I do use hot showers, baths, and massage as well. I try to

avoid medications but that isnt always easy.....if you ever want to chat drop

mea line....

Donna

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-Hi Jan.

Welcome to the group, theres a few JRA vets here, they are an awesome

crowd. Its always good to read of how they have handled growing up

with this disease. They are an amazing group of heros!

hugs Helen and (9,systemic)

-- In , " Jan " <jannabelle2001@...> wrote:

>

> I am 34 yrs old and have had arthritis 31 of them. I have lived

with

> constant pain for abot 4 years now. I bought a very large home for

me

> and am now selling. I also decided to help others. But, now I

> think " bedside " nursing care is too hard on my bones. I feel

> sometimes tomatoes bother me but othertimes breads! Despite all my

> know of this disease..all the research my pain stays. I am lucky

for

> the time I have been given to make people more comfortable. If

anyone

> wants to talk or offer pain relief tips...besides baths, exercise

and

> ice packs.. I would love to talk with someone dealing with this.

> jannabelle

>

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  • 3 years later...
Guest guest

Thinking of and praying for you Dede! You KNOW you can overcome this...you've

come so far as it is!!

Love,

PH

>

>

> I got a call from my lung doc this morning, and she told me that my lungs are

very obstructed and that the meds they

> had me use yesterday during the lung function tests helped

> my lungs alot, and opened them to the tune of a liter ! that is alot ! I

asked her if this would improve them enough that I would not need to use help at

night via c-pap, and or oxygen, and she said no, that was a separate problem and

that I would need that too.

> She said it will make a huge difference for me, and asked me to go in to her

office in the morning and get some samples to use and be taught how to use them.

Said it is different than a regular inhaler. This medicine will also not

> affect my heart.

> Wow... I am amazed......totally.....didnt know what a serious state I was in

with my lungs.......

> I have family that will arrive here any minute, so I will be away from the

comptuer alot during the next several days..

> Much Love to all.....

> Dede

>

>

>

>

> When the power of love

> overcomes the love of power

> the world will know peace.

> ~ Jimi Hendrix

>

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Guest guest

Wow, Dede,

I will be praying for you....should we fault your doctors for not alerting you

to the seriousness of your lung issues?

I hope you have a fully wonderful and blessed time with your family! We will

miss your presence here!

Love,

Patty

>

>

> I got a call from my lung doc this morning, and she told me that my lungs are

very obstructed and that the meds they

> had me use yesterday during the lung function tests helped

> my lungs alot, and opened them to the tune of a liter ! that is alot ! I

asked her if this would improve them enough that I would not need to use help at

night via c-pap, and or oxygen, and she said no, that was a separate problem and

that I would need that too.

> She said it will make a huge difference for me, and asked me to go in to her

office in the morning and get some samples to use and be taught how to use them.

Said it is different than a regular inhaler. This medicine will also not

> affect my heart.

> Wow... I am amazed......totally.....didnt know what a serious state I was in

with my lungs.......

> I have family that will arrive here any minute, so I will be away from the

comptuer alot during the next several days..

> Much Love to all.....

> Dede

>

>

>

>

> When the power of love

> overcomes the love of power

> the world will know peace.

> ~ Jimi Hendrix

>

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  • 2 weeks later...
Guest guest

Oh Dede!

Stuff like this really makes me angry at our medical system....whoever said we

have the best medical system in the world needs to wake up and smell the

coffee!!!!!

I hope you get the care you deserve, sweet Dede!

Patty

> >

> >

> > I got a call from my lung doc this morning, and she told me that my lungs

are very obstructed and that the meds they

> > had me use yesterday during the lung function tests helped

> > my lungs alot, and opened them to the tune of a liter ! that is alot ! I

asked her if this would improve them enough that I would not need to use help at

night via c-pap, and or oxygen, and she said no, that was a separate problem and

that I would need that too.

> > She said it will make a huge difference for me, and asked me to go in to her

office in the morning and get some samples to use and be taught how to use them.

Said it is different than a regular inhaler. This medicine will also not

> > affect my heart.

> > Wow... I am amazed......totally.....didnt know what a serious state I was in

with my lungs.......

> > I have family that will arrive here any minute, so I will be away from the

comptuer alot during the next several days..

> > Much Love to all.....

> > Dede

> >

> >

> >

> >

> > When the power of love

> > overcomes the love of power

> > the world will know peace.

> > ~ Jimi Hendrix

> >

>

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Guest guest

I totally agree with you on this Dede,

and that was the reason for this site...to empower us to take charge of our own

health and look outside the box for answers...

I'd say it's worked pretty well.

We've seen some amazing results, and know we will continue to see more.

It's been a wonderful connection to other women.

I'm so glad you are one of them.

Big hugs back!

Patty

> > >

> > >

> > > I got a call from my lung doc this morning, and she told me that my lungs

are very obstructed and that the meds they

> > > had me use yesterday during the lung function tests helped

> > > my lungs alot, and opened them to the tune of a liter ! that is alot ! I

asked her if this would improve them enough that I would not need to use help at

night via c-pap, and or oxygen, and she said no, that was a separate problem and

that I would need that too.

> > > She said it will make a huge difference for me, and asked me to go in to

her office in the morning and get some samples to use and be taught how to use

them. Said it is different than a regular inhaler. This medicine will also not

> > > affect my heart.

> > > Wow... I am amazed......totally.....didnt know what a serious state I was

in with my lungs.......

> > > I have family that will arrive here any minute, so I will be away from the

comptuer alot during the next several days..

> > > Much Love to all.....

> > > Dede

> > >

> > >

> > >

> > >

> > > When the power of love

> > > overcomes the love of power

> > > the world will know peace.

> > > ~ Jimi Hendrix

> > >

> >

>

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