New auto immune site?!!

[MissyLouWho?]

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!!!

[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.

[gold55]

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

[ttdub]

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.

[ttdub]

We've got a newsletter now guys! I'm really excited. Here it is: http://www.areyoureallysick.com/newsletter.html