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Totties Pretties on Etsy

Totties Pretties on Etsy
Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Friday, July 29, 2011

Just a Friendly PSA

Unfortunately there have been some rather disturbing events this week in my online community of support. When Jenna was first diagnosed 3 years ago I felt COMPLETELY alone. The one thing I managed to find online while searching was a blog written by another Mom. It felt really good to know that there was indeed someone else out there. She and I emailed, texted, phoned, even met up at a doctors appointment. Somewhere along the way I started this blog. It became a source for me to vent through, keep track of Jenna's health (or lack there of) as well as a way to meet others going through the same thing. From this group of blogger Moms we also became a community on Facebook, first as Facebook "friends" and then into a large PRIVATE group. You think private, you think safe right? WRONG, oh, so, WRONG. Let me give you a real easy tip. If it SEEMS incredulous, that's simply because it is. Do not believe everything that you read. EVER. Do your own homework. Want tips? I can let you know some but I won't post them here. You want to be very wary of who you meet online, I mean yes we all know that, but even folks that seem okay, that seem to be going through the same things you are, REALLY check them out before hand. Also, protect yourself. Did you know that there are sick people stealing pictures off of blogs of sick kids to create fake blogs of fake kids of fake families to garner attention, sympathy, gifts and money?? Yep, true enough. Get enough angry Moms together and we can get to the bottom of something fishy. Again, want tips, I can let you know, but not here and you had better believe that I will thoroughly research you before I tell you anything. Due to recent events, many Moms have decided to make their blogs private. I won't be doing that. Finding a blog was my lifeline when we bean this journey. If there is even a CHANCE that I can be that lifeline, then I will keep this public.


Courtney said...

My blog is currently private, because I was angry and upset but I have been thinking that I need to make it open again. When I started it, it was with the hope that it could help a newly diagnosed family.

Amy said...

My point of view is that if we all run and hide 1) we have let them win and 2) it won't stop them anyway. Our blogs are here to help people. If we all go private, that's a shame.

SarahDiane said...

Wow. That sucks. I hope you guys don't all go private. I'm dealing with the beginning of JRA with my daughter and it's awful. I am so thankful to have found so many blogs to know that we're not alone.

This is probably an awful time to ask more about your facebook group, but I really would like to know more. I'd love to join it. You are welcome to email me (sb2spencer at to keep things more private.

Hang in there.

Erika said...

Absolutely insane stuff....but you know you're in my core, you get updates like you're family :) cuz you are and we have never been face to face. :) xo xo