Re: No worries :) (also a bit religious))

November 20, 2010

,

In Regards to your family and acceptance, it took all of my family a good

five years to accept my illness. I think it hurt my parents more than

anyone. They are

Very Religious and believed I would just be healed (mostly because stills is

so rare and hard to diagnose, etc).

I can share a lot with you on this topic, but I'll keep it short. It hurts

a lot when you feel like your parents don't understand. You need to give

them time to come around. If you haven't heard of the 'Spoons poem' that is

out there on the internet written by a lupus patient, it is a great way to

share with family members how you feel without saying a word, they just have

to read a short one page poem.

Also, remember to give everything time. You may find yourself in remission

before you know it. Some do, some don't. It just depends. I have recently

found that going off of wheat products has helped me, even though the blood

work said I don't have Celiac disease. I don't know why it has helped. The

Docs say that some people with auto-immune people have a sensitivity to

wheat products but are don't have Celiac disease and suggested that I tried

it.

I just lowered the wheat drastically and it seemed to help. Who knows why

and who it will and won't help, but I was willing to try anything. J

Anyway, Hugs to all

Alli

November 20, 2010

Thanks Alli,

You are the second person that has hinted at avoiding wheat or having celiac's

disease. I've never been tested, but maybe I will ask about it. The people in

my family that count accept it. It's my boyfriend and his relatives I am having

issues with but they are trying I just don't know how to help them understand. I

have heard of the Spoon poem. and I did give it to them..lol But they just said

oh yeah we have the same problems they are in their 60's and are ranchers still.

His Dad has a lot of pain. But he kind does it to himself because he doesn't fix

what is broke. So it still kind of went over their head. And as far as my Dad

well he was never there before so I'm not surprised I could probably right a

book about that and it could be make into a lifetime movie...lol I know I was

diagnosed with AOSD but I do believe I've had still's since 4yrs old. I tend to

have several flares a year and in between I still get the joint pain. So I will

hope for remission but there doesn't seem to be any true remission with Still's

only management with medication. And that really isn't remission. Unless you one

of the lucky few who only have one flare and it's over.

Thanks for the Advice

,

________________________________

To: Stillsdisease

Sent: Sat, November 20, 2010 12:25:50 PM

Subject: RE: No worries (also a bit religious))

,