I have been a victim of bullying and slander on a social media site several times in the past two years. Mainly from only what I can assume are females that do not like me in a small town, which is perfectly normal sometimes I don't even like me. I could be wrong because there is no real way of knowing who they really are. I understand I am not everyone's cup of tea and I make a point to make my point made if you like it or not. I am sure some of you that follow my blogs or my FB have even seen a little bit of that. With that said, these threads that are posted about me are to attack something I am doing in my life in one form or another. Be it who I have dated, fundraisers I have hosted, clothing I have worn, the jobs I have had, college, or even my family. Which is fine if you have a problem with me it is your opinion of me and who I am and you are entitled to that opinion of me.
So this blog is not to say, "poor poor pitiful me", "I have done no wrong", or pretend to be Mother Teresa because I am not. I am simply human and I have made some choices I disagree with. They are trying to say that I am untrue to myself, that I am a con artist, and that I have not done the fundraising that I have busted my ass to do, selflessly while loving every moment. Which is wrong, but is also pointless to try to argue with someone online about. People act completely different behind a computer screen than they do in front of your face. I am a very honest, blunt, and to the point person. I have said it many times that sugar coating CF is not how I think things should be done. I feel the same way about my life. So I will get to the point of this blog.
♥I have Cystic Fibrosis, I have had CF since I was born, I have grown up with the disease in my face 24-7, 365 days a year. I have handled my CF very well in my opinion. It takes a lot to bring me down and even more to take my smile away.
Let's just say these ladies have only been able to constructively upset me twice with all they have thrown at me. The first time was when I had to call a quits on my nonprofit organization, because in a small town talk is cheap and if you have a big enough mouth people will make up their own opinions on their own. Just as you all are doing in one way or another while reading this. I am sure those who agree with what these girls have done are seeing this post as sheer "publicity" or "drama" and those who know the truth that has been twisted into lies are thinking "Damn Sandi, we have read this before", "If you respond you are only letting them win", and so on. The second time was yesterday. When this is what was said in response to us going to the fertility clinic on my FB page......
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| This thread was started because my parents' house burnt down on Tuesday morning, I was selling the "Alway Smile" T-shirts for our wedding/honeymoon, and that I have been trying to figure out fertility. |
I have been doing some thinking and of course that is never a good thing, however, I am starting to think that because I am used to the pain of always being sick, the pain of pain, and the CF lifestyle that I may make it 'look' easy. If that is even possible to do. I also think the same about the CFers I have become close with because our personalities are so similar I think that the strength we have is probably why someone may 'think' that CF isn't really a 'big deal'.
♥These people only get on my FB to find when I am having a rough day or a sad status to pick apart. They do not follow the hundreds of amazing things that go on in my life, but look for the once in a blue moon that I am having a bad day or something they can twist around and make sound bad. Thinking that because they see me out and having a 'normal' life, doing the things that I do, being able to be a high functioning CFer for whatever reason they think we don't go through hell that we do just to breathe each day.
Even in the hospital, I laugh, I joke, I cut up, and carry on. I am online working, posting, and chatting with people because the hospital has become so familiar to me that it isn't a big deal to ME any longer. I mean I am 26 almost 27 yeas old and have been doing this forever. I no longer get the visitors who rush in as soon as I am admitted, the flowers stop, the phone calls dwindle down, messages on Facebook get limited. People are just used to me being in and out of the hospital and it gets to be so routine that I think people forget how much it takes out of me. Sure, I am happy and in good spirits I always am, for the most part I am a positive person. It doesn't seem to be such a big to do unless I am in for a horrible reason with low sats or a blockage.
At home when I want to clean sometimes I just can't get up off of the couch because I am too exhausted, but no one sees that. No one understands it other than another CFer. When I am walking through Wal-Mart using the cart as a crutch, no one knows that is what I am doing, they just think I am being lazy and leaning on the cart like 95.9% of everyone who is walking around leaning on the buggy. This is something only a CFer would know, catch, and understand.
♥Just this week 3 CFers lost their battle and 3 CFers got that phone call they we are waiting for saying they have a new beginning, a new journey, and new lungs. CF isn't a disease to sweep under the rug and act as if the person you are bullying is the only person who deals with it and it is just a hiccup in the road. New CFers are diagnosed every day as they are leaving this world just the same. More of us are in hospitals right now than not, and we stay positive for the most part. We stay strong for ourselves, for our support system, for Cystic Fibrosis to fail and us to win.
So to evaluate my disease, or any terminal, life altering, or silent disease, based solely on a "hard" yet feminine exterior created in order to get through this roller coaster of a life is no reason to say that we should not have the 'American Dream' with a white picket fence, an amazing husband, a son, a daughter, and a dog. Although I would be fine with an oceanfront view, a son OR a daughter, a dog and my already phenomenal man at my side. To say that any child born to anyone who suffers a disease is like saying we are less than than you and are not worth the same things in life as someone who is 'healthy.'
I make it look easy, but I promise you it isn't!
Sandi
If you are interested in learning any more about CF, my life and journey with CF, if you would like to help my parents in the tragedy, or just need encouraging words follow me on Facebook!