Tuesday, March 18, 2014

Great Facebook Messages!

I know, thanking a social media site seems odd. But it does keep us connected online! I love that my Mom's side of the family has a "Family Group" on Facebook and we can all just talk to each other and set up weekly lunches! Otherwise, I'd really miss my Aunties, Uncles, Cousins, etc! It makes high school reunion and CF event planning MUCH easier! Also, if you read 150th Blog post HERE! then you understand how important the online community is to CFers. (I know at U of I, I learned CFer isn't politically correct, but I'm not typing out "people with CF" all the time and I think most "CFers" would agree, we all call ourselves this, for the most part...) CFers need the online support, since we are not encouraged to be around each other, due to the passing of infections and harmful bugs we harbor in our lungs. No worries, people without CF, don't catch them. To be honest, it's more likely you will get us sick. But still, we get stares when we cough or wear a mask. That's the truth of it. And this is one reason we need to go online to find support sometimes. We can talk, vent, and encourage each other through so much.

fun fact: did you know I hate when I wear a mask and people smile at me...not because they smile, but because they can't see me smile back. Guess just need to draw it on there! Let's put smiley masks in every hospital!

So yes, online support is important and facebook does just that. More EXCITING is that it can reconnect us with people we haven't seen in ages! Yesterday, I learned about the "Other" inbox in messages in facebook. I never paid attention to it before. Most likely, because we grow up with spam or a junk inbox in our email, so we learn to ignore them. Well, after I found out that all my non-Facebook friends messages to me would go there, I realized there may be some important messages I've been missing! BOY WAS I RIGHT!

I had 13 messages, 1 random person telling me they saw me on the Big Ten Network doing Stand Up (see me doing Stand Up Comedy on TV Right HERE!) and they thought I was hott (yes, with 2 T's). I just thought to myself, hello, better comment would of been "You were hilarious, I love that you shared about your CF, way to share awareness while making people laugh"... Now, this maybe I would be more likely to reply to... (rolls eyes at guy). But the rest were great messages. Mostly CFers, asking questions about different topics I had discussed on my blog or on Facebook. Also, I got a message from Cookie's son (who always sang to kids in the hospital- LOVE COOKIE). He is sending me her CD with all the fun songs on it she used to sing me! So excited to get it and listen to it (and remember the good times, yep good times- even in the HOSPITAL!

AND.. I got a message from an CFer I knew when I was little. I haven't seen since I was eight, she was 18 at the time and I looked up to her a lot. I was told this amazing young woman got living donor lungs from her parents, but in fact she did not. She HAS received 2 transplants though and is doing great now! She's 40! She's an attorney and plays Cello in a Symphony (how amazing is that). All these years I was told she had already passed away. I was sooo happy to get her message. I don't remember a lot from when I was little, but I remember loving her, I called her "Tubes." So I apologize for any false account I gave on the blog in the past about her living donor lungs, but she still is just as much of an inspiration to CFers! And I'm just so happy she is doing well, I called my mom too (since I know my mom always loved all the CFers). My mom became a 2nd mother to a couple of them (especially Andrea), so she was very very happy to hear this! What a joyous thing to read on facebook! Wow! Here is the past post  Here! I wrote about Jennifer (which it will be hard not calling her tubes anymore) But she doesn't have all the tubes anymore she looks great! I'm so glad to be able to keep in touch with others with CF, and I especially love re-connecting with past CF Friends I haven't talked to in years!

So thank you Social Media!

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