light; Yeep. I think my parents got the idea from my idea to wear an apron before eating became a huge problem.

Half of my mouth is numb, and my facial muscles there just don’t work. That’s compounded by my swallowing problems, and...

My parents overpay her for what she does, but help is incredibly hard to come by, and there are times I need to be left alone for more than two hours. (I need eye drops every hour and a half. Dry eye...) so offending her is...something to be avoided.

I am so glad I met you. You’re loads more helpful than my “support group”. And fun!

Maybe I should make bibs for adults that aren't hella depressing. I guess I could make baby bibs too. What makes a good bib in your opinion?

That sounds frustrating. I'm sorry hun. Thank goodness for food thickeners, huh?

I imagine so. Good help is hard to find. I feel like she shouldn't be offended by a simple request to not stare at you. Especially since she's being paid.

Aw, thank you hun! I appreciate that! I'm really glad that we met too.
I was telling my husband that I met a new friend online that I have a lot in common with.

Oh yeah, some support groups suuuuck. There's one for EDS that I'm on and people are always asking the same questions over and over again. It's really annoying.

light; Hmmm...we have to buy in bulk, so cost is a consideration. We double up disposable ones because alone, they’re too thin, and washing stuff gets impractical when I also make messes everywhere.

I’ve never given much thought to having options because it seemed like a pipe dream? And after that furor over plastic straws, I’ve felt pretty down about using so many single-use products.

The internet is great!

Yeah, mine is like that too. And the groupthink... I like knowing there are people with my condition, but I don’t feel like I belong sometimes. It’s weird.

Moi; Do you ever get told to smile more? It’s awful.

I feel like disability rights/awareness is going both forwards and backwards. On one hand, the internet is a great equalizer and the media is catching up. On the other, it feels like the community sometimes (or a lot of the time) isn’t being listened to, still.

Yeah sure there's all these alternatives to plastic straws, but as I video I watched (from someone who needs a wheelchair to get around), not everyone can use those options for various reasons, leaving them with single use straws

I can’t even use straws anymore. But before that happened, I had to use plastic.

And plastic straws were actually invented for hospital use, for safer drinking for bed bound patients.

I like using straws with soup, for the broth
I got flexible rubber straws at Target recently, they're meant for travel mugs but they work for this too

I think they're large enough to drink milkshakes with

I have to drink with a spoon. My mouth doesn’t work well.

Eating is a pain, honestly.

Moi; that sounds so annoying. I wish people could mind their own business and be less nosy. Like, even if you were annoyed with them, you have a right to be.

The laziness accusation is awful. A lot of the time, I wonder if I’m lazy, but then I realize that keeping a job (if anyone would even accept me) would require an insane amount of effort. I’m just not physically capable.

Haha, as long as you believe it helps!

It’s been a rapid decline. I think I mostly eat oatmeal with sides like eggs. It’s...okay, I guess. At least I can eat. :)