Discussion Board for Lupus?

[Brer Shay]

The DisBoards were so helpful when I started planningour first Disney trips. Then I found the Budget Board and the DisABILITIES board when DS was diagnosed with Asperger's - it's been a great source for information and commiseration. I've just been diagnosed with Lupus and I'm wondering if anyone can recommend a similar style message board for those with Lupus? Thanks for your help.

 

[peemagg]

Go to www.butyoudon'tlooksick.com. It is a really nice forum for all sorts of invisible diseases.

 

[Piper]

Go to www.butyoudon'tlooksick.com. It is a really nice forum for all sorts of invisible diseases.

This is the one I would suggest, too!

 

[scooby9932]

Go to www.butyoudon'tlooksick.com. It is a really nice forum for all sorts of invisible diseases.

Absolutely go to the "spoonie" website! It's a great community with wonderful resources. The Spoon Theory has helped me explain Lupus to so many people in my life.

The other forum I visit is The Lupus Site Forums.

 

[Brer Shay]

Thank you so much for the input. I knew my Dis friends would have answers on this one too!

 

[KPeveler]

Another vote for ButYouDontLookSick.com/boards.

 

[brat]

Thank you Brer Shay, I have been having issues with a friend(male) of mine not understaning a friend we have in common(female with Lupus).He can see my mobility issues and it is far easier for him to understand the simple things like I do not do stairs without somesort of help.I have tried explain that she only has so much energy for the day.He gets that I wear out from parenting(Ileft my 5 year olds with him for an afternoon.)but it frustrats me that he will not give our friend the same breaks he gives me.

Thank you Scooby9932,peemagg,Piper, and KPeveler for the link and spoon story, I sent it to my male friend.He called back after reading it and said he got it.

 

[peemagg]

I read the Spoon Story to my Mother the other day and it has helped her come to terms and see how me using a wheelchair can be better for me in some cases more than the crutches or scooter. She is now not so against me getting and using the wheelchair now.

 

[brat]

peemagg, my parents had issues with my first chair back when it was pain and fatigue from pressure on my cord and dealing with chemo while in college.After my oncolgists told them I had faught them for over a year about using one they accepted it better. Dad had thought I was being lazy.My first chair was an old style steel folding E&J built like a tank. Years later he understood.

 

[Deesknee]

I just wanted to say thank you for posting about the spoon story. I had just posted a thread asking for help on coping with an invisible disease. I think this may help me very much. Thanks.

Dee

 

[miniaudrey]

I have Lupus too. I have been wondering about message boards for Lupus and plan to check those out! Thanks.