I have been thinking for quite some time now about designing a website around helping people understand auto immune disorders better. The spoon theory has changed so many people's lives, but I've thought of so many different things that the spoon theory has left out and ways to expand on that incredible format. I want to have a very broad article, but also very deep, more understanding articles for those wanting to learn more. I thought I'd run it by my favorite forum first... What do you guys think?
Sounds like a great idea, the more comprehensive information out there the better!
Sounds good. I you want to use my Sjogren's welcome, you can.
Great idea - especially if you have the time and motivation!
I think you should name it "Screw you Sjogrens!!!"
Seriously though, I think your site sounds much less angry than mine ;)
Anything we can do to drive awareness is a plus. Maybe you could add something specific for spouses, as it seems many of our spouses haven't a clue what we go through every day. At least I know mine doesn't. :(
Great Idea you can count me in on that one..
Good Luck
Cheryl
Someone posted a video they made which was really helpful in getting those without SJS to understand just how much SJS affects our lives. I think it was SjoDry? Something like that might be helpful as well. I know my hubby won't take the time to read anything but I did get him to watch the video.
I've got the first draft home page without the true URL here: http://areyoureallysick.weebly.com/
If you guys have any ideas to add or any ideas for other pages. I have a ton left, but I thought I'd show you guys where I'm going with this.
Please put a space between previous paragraph and title (</br> or <p></p>). The type font was hard for me to read. ( 12 point might help with same font?) Other than that it looked good.
Quote from: Joe S. on March 16, 2012, 06:36:09 AM
Please put a space between previous paragraph and title (</br> or <p></p>). The type font was hard for me to read. ( 12 point might help with same font?) Other than that it looked good.
I will do that. It's mostly a very first draft. Thanks for the advice.
Sorry about my old dry eyes finding it difficult to read.
No need for apologies. I feel you on the dry eyes. It's a major complaint. Especially since I'm on the computer ALL THE TIME. lol I don't have a clue what I would do without restasis.
I fixed the font and will probably use this same size for everything. I also spaced out the titles.
Thanks it looks great!
I'm glad you like it. I'm working on sjogren's now. I'm going to try and find good writers for different diseases to help write those pages.
Do you guys have anything to add to this: http://areyoureallysick.weebly.com/sjogrens.html
It's not finished, but I was hoping for some added ideas.
I think it's great so far! People need to hear what it's like for us, not just the terminology. Simply stating we have dry eyes, memory loss, fatigue...just doesn't hit home like when you explain how our eyes glue shut and we need eye drops to open them and even then sometimes they rip painfully. How we don't have the energy to walk to get out of bed, let alone go to work and do our jobs well. How it feels like we're encased in lead (a good thread is from a week or two ago about how the fatigue feels for us). I like it so far :). Maybe write a fabricated day of the worst of how things go. From getting up with no spoons and no eye drops because we couldn't afford them due to working less from the complications, to trying to sleep and not being able to from the leg and joint pain. Really detail our thoughts during the day and how people interact with us and say things behind our backs about us. How hard it really is, and how we are afraid to lose our jobs due to memory loss and fatigue, the depression we suffer from, stuff like that. Really paint a big picture so the non-auto-immune crowd can understand. Great job TTDUB!!!
I was thinking about adding how people talk behind our backs. Thanks so much for the others because a few of those, I didn't think about.
Super site!!! I have lots of autoimmune in my family but the only thing I may be able to add is eye info. I've worked in Ophthalmology for 27 years....don't know if what I could add isn't already known by all. Great job...enjoyed reading and look forward to more! jill
Thank you to everyone who was so kind in the responses to the site. I've added a place for people to send me an email via a form, telling me there story, and I'll put it on the site. Here it is: http://areyoureallysick.weebly.com/submit-your-story.html
I really hope this can become something. The more people know, the better. Could you guys imagine, one day, autimmune diseases being just as under as cancer? When you tell someone what you have, they somewhat understand. That's a dream right there.
We've got a newsletter now guys! I'm really excited. Here it is: http://www.areyoureallysick.com/newsletter.html