RE: Re: fighting the dragon (vent - long)

June 30, 2011

thanks i will look that up you tube helped when someone in the family got

alzeihimers and i watched the videos i found on there

>Thanks Kathy.

>

>If you are still trying to et family to understand, you might try going to You

Tube and searching for " Still's Disease " . There are serveral videos on Still's

(adult onset and systemic JRA) and alot of videos on regular RA.

>

>There are 4-5 good ones by Jill Zarin's group " CreakyJoints.org " Their mission

is to bring awareness to Still's Disease, after her son was diagnosed a couple

years ago. These guys are using TV/film professionals to film and edit

documentaries and interviews.

>

>The Arthritis Foundation also have posted several Public Service Announcements

on You Tube that address Still's.

>

>Hope that helps,

>

>>

>> i have not had stills for very long but i find it the hardest part is you

look okay but you feel terrible and it is hard to convince people otherwise

....... aaaaaaaaaaaaanyway good luck

>>

>

July 1, 2011

my sister is a nurse so she understands my mom rest her soul treated me like i

was 12 and my son who is 39 seems to forget it was a yr ago today icame home

form the hospital i am in the midst of a flare and my rheumy left town so my

primary dr is taking over the new rheumy cant see me till holidays but otherwise

i am okay

>I have had Still's for 2 years and agree that it is difficult to convince

people that you feel so bad when you look okay! I have been experiencing a flare

for 2 months. My Rheumy has changed my meds and my symptoms seem to be lessening

in severity. Elly's reference to " The Spoon Theory " from the website, But You

Don't Look Sick, has been helpful in explaining the effect of Still's to others,

but my employer's disability provider still doesn't get it. They approved me for

short-term disability for my 1st month off, but decided that I could go back to

work (against my Rheumy's advice). So I have had to appeal their decision (which

caused me stress and seemed to make my flare worse).

>

>Tomorrow will be a better day:)

>

>Leanne

>

July 2, 2011

Leanne and Kathy, I know it's very hard for me when others don't understand.

It's been years of a silent suffering for the most part because even though my

family is loving they don't always know the extent of my daily trials and pain.

The brochures are a great help but I quit trying to explain in too much detail

many years ago and just do what I can, I TRY and be assertive for my needs when

I can because that's hard for me and I'm still learning to put myself first

sometimes. This group is so wonderful because we have a family that does

understand and a place where it's safe to share our frustrations, questions, joy

and triumphs and hopefully some laughter too. Please know it usually gets better

at least for some days as time passes. I hope that will be sooner for all.

Smiles and hugs,

From: grammakathy22@...

Date: Fri, 1 Jul 2011 12:58:31 -0700

my sister is a nurse so she understands my mom rest her soul treated me

like i was 12 and my son who is 39 seems to forget it was a yr ago today icame

home form the hospital i am in the midst of a flare and my rheumy left town so

my primary dr is taking over the new rheumy cant see me till holidays but

otherwise i am okay

>I have had Still's for 2 years and agree that it is difficult to convince

people that you feel so bad when you look okay!Tomorrow will be a better day:)

Leanne

July 2, 2011

the only person who understood was my mom she is gone now so i just plugg along

according to my grandma you have to play the hand you are dealt

On Sat Jul 2nd, 2011 2:03 AM EDT Windsinging melt wrote:

>

>Leanne and Kathy, I know it's very hard for me when others don't understand.