Now You See Me

About a month ago, my fellow blogger Nikki (As I Live and Breathe,¬†http://ilivebreathe.com/blab-archive/) and I started hosting sessions on Blab to talk about topics that concern us as patients with rare diseases and chronic diseases. We’ve had a lot of fun and have learned along the way what has worked and what hasn’t. Nikki also keeps seats on lockdown so we don’t have bullies show up on camera (though we can’t control trolls that come in and leave after they have said nasty, vile things). It’s pretty easy technology once you get the hang of it. I hope that you will consider joining us for our #SickadillyChat every Friday around 4 pm EST/1 pm PST (times sometimes change by an hour or two earlier if we have something that is going on – you can always subscribe to Nikki on Blab so you have the link for the show). If you are otherwise occupied, Nikki keeps a working list of our chats as they are recorded.

“Sickadilly,” according to the Urban Dictionary, means 1. To be fresh or poppin, or 2. To look beat. I mean, c’mon, we’re a little bit of both, aren’t we?

I consider us lucky to have the help of a few physician friends that Nikki has gotten to know well from her years of advocacy and education. Their enthusiasm and openness helps to keep us on the right track.

If you have ideas or topics you would like to cover, feel free to leave comments for Nikki or I. We also may approach people to join us, if they are able. We already have a running list of topics that we hope everyone will find interesting.

Here’s the latest one regarding apps and devices used to assist with your healthy living and healthcare from home, from February 26, 2016:
https://blab.im/nikkiseefeldt-sickadilly-chat-4-let-s-talk-about-tech-baby-ci-disab-rare-dis

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A Step In The Right Direction

There’s a little release party going on for Barbie, and it signals a change in awareness and acceptance. Hooray for that! All of those years of articles explaining that Barbie’s measurements would leave her on all fours with missing ribs to account for her mind-blowing tiny waist have finally been heard. Barbie will come in petite, tall and curvy, as well as different hair colors and skin tones to be a more realistic reflection of our American society.

http://nytlive.nytimes.com/womenintheworld/2016/01/28/meet-barbie-in-her-new-forms-petite-tall-curvy/

I quite like Quartz in general for human interest stories, including the Barbie makeover. Here is their take on it (and incidentally, whomever dressed Barbie in the first shot should be shot, because the cutesy tank top says “Be Your Self,” with no hyphen to indicate that it should be “yourself,” as in, one word with a hard return between syllables):

Curvy, petite, and tall Barbies will do nothing to empower our girls

I think they may have felt a little pressure and saw true competition from the Lammily doll, which was created through a crowd funding site and is now going into large-scale production. The Lamilly has far more realistic measurements, flat feet and honorable career outfits. I hope that the “new” Barbie doesn’t push the Lammily out of the market. Options must be celebrated, and small businesses supported. It shouldn’t take crowd funding to get a sensible role model to girls and boys for mass consumption. Every little message we send out into the universe regarding women’s bodies, who owns them and who has a right to dictate what they should look like makes a difference in how children create their own values. Why not embrace inclusive standards rather than exclusive? (BTW, some of the pics on the Lammily site depict girls reflecting on periods – something you’ll never see Barbie doing, but every female with a functioning uterus and ovaries goes through. Why not make it a safe and open topic?)

http://lammily.com/

Just as a side note, I happened to access my blocked call list today because I had to add another solicitor in my phone (they always find a way to get around the “Do Not Call” government list), and I noticed that Nashville called yesterday. That was the first time in three weeks. I guess he got tired of being milked for money by the fake profile Russian and Chinese “girls.” He’s going to keep singing the same song about how he’s never broken up with anyone, and he just doesn’t understand what’s going on. Sure ya do, Nashville. You got caught jerking off. Here, I’ll get you a Barbie doll…………