New type of spoon theory

[ttdub]

Hey guys. I wrote something somewhat similar to the idea of the spoon theory, except I feel it's way closer to sjogren's than the spoon theory. It is basically a day in the life. I really hope this can help others understand what sjogren's patients go through. Here it is: http://areyoureallysick.weebly.com/sjogrens.html

[Jackles22]

I love it, could there be a "a day in the life" where sjogrens patients have option to put their own in?

[ttdub]

I love it, could there be a "a day in the life" where sjogrens patients have option to put their own in?

That is such a fantastic idea! I will work on that tonight when I get off work. Anyone else wanting to contribute? I want this to get known because for me, people not understanding makes this disease literally twice as bad.

[ttdub]

My attempt to put that in there was the part where they were talking near the sink. I will definitely say that I will include a part where others can include there story. Maybe just a simple comment plug in. I'm not quite sure how, but I will make sure people can tell there stories. It will really help.

[DragonflyC]

Great post! You capture the frustration of not knowing what each day will bring so well.

Have you seen SjoDry's "A Day in the Life of SjoDry"? It's at http://sjodry.wordpress.com/2012/03/12/a-day-in-the-life-of-sjodry-3/ if you'd like to check it out (she's a member here at SJS World, too).

I also blog about having chronic illness and have found it a tremendously powerful way to reclaim my life and identity.

[mshistory]

I have the Sjogren's cough plus asthma... I'm often telling people I'm NOT sick and they won't catch anything from me. I am fairly young and still trying to build a career so I don't want anyone outside of family and close friends to know I have a chronic illness, so I just blame the asthma. By the way, teaching with Sjogren's (as so many on here know) is great fun... I wonder how many of my students wonder why I'm constantly sipping water throughout my whole lecture 

[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.

I posted this on my other post, meaning to post it here. So I just copy and pasted.

[Doxie]

Good job on your post! You explain some things sjoggies go through that people just don't quite understand.

I hate it that I one of my friends ask me how I'm feeling every time she talks to me.  I know that she cares, but I hate to always tell her my woes. A lot of times I don't tell her, but then I end up getting in hot water over it later.

I think that a lot people don't understand that this is a day-in-day-out illness.

[ttdub]

The more, the better! Thank you. I look forward to putting it up.