Social Media, Bullying, & CF

♥So I have been debating to post this or not to post this and I have decided that I will post about it although I do know there will be a backlash on my end. I do however think it is important to get this off of my chest and possibly help CFers realize we are no different than anyone else and we deserve no less than anyone! Bullying on any level should not be taught, tolerated, or glorified.

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......

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. 

It never fails no matter what they are trying to get others to believe as soon as a relevant response is made that disproves everything they have said they have nothing to do but to retreat to attacking my CF. This upset me yesterday, only because having a baby is something that is close to my heart at the moment. I am a woman, I am getting older, my friends are all having babies, I guess you could say my clock is set on snooze. This didn't just upset me for me though it upset me for my CF family, my CF friends, and my CF kiddos that in the past 5 months I have grown rather close to. I know your stories, your kids' names may it be your fur babies or your people children. Seeing someone that is being this ignorant to a disease such as CF just out of pure 'dislike' of one person breaks my heart. I am the first one to say we are individuals and we are all different, but when it comes to things like family, strength, and our fight we have similar personality traits.

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

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Death & CF

Death is not a fun topic to talk about. It is something we will all find out one day, regardless of how it happens or when. So when you get down to the bare bones, it is actually the sole thing in life that is 100% guaranteed.

As a Cystic I have been forced to face the reality that is dying at a youthful age. Not only because yes, I am a CFer, but I lost my grandpa at a young age and I was needing to figure it out on two levels, because my own disease.

☆So let me explain something about "knowing you're going to die, " I know everyone knows this, but very few people ever embrace this thought until later on in life.Knowing your dying, you love more, smile more, want less, help more, and hug more. Knowing you're dying you make the best of every situation, you remember everything, and you never take anything for granted. Recognizing you are dying you see more, understand more, and can be at complete peace with yourself. Death and CF are the reason I am the way I am. I wouldn't be as caring, I wouldn't be determined, or stubborn, humbled, or blessed. I wouldn't be selfless and want to help all who are in need. I would have never went for my dreams. I wouldn't have had the drive that I do to make things happen.

☆Without "Death" and CF I wouldn't be me, I wouldn't be Sandi!

Death, I am not afraid of it. I do not want to run into it just yet, however, I would be content if I was to go tomorrow. I know my parents, siblings, fiance, and friends wouldn't  be overly thrilled. Nevertheless, I am a month shy of 27 and I have had an amazing life. It's been one thing after another for me and when something bad happens two more good things occur for me. So I would be ok if this was the end.

Getting through high school with the thought of death terrified my classmates. It is such a literal topic, but maybe, just maybe because I am a Cystic to me it seems like less of a major deal.

☆Regarding me and my death mind you. If anything happens to my heart, my life, my loved one's I am terrified and that is a whole other matter.

So each day I wake up and each day it takes a little longer, but I put my feet on  the floor, hands on my knees, take a deep breathe and cough up everything. I grab my nebs. I'm off to start my day. In the midst of breathing in my medication, I am putting out my morning MEDs and grabbing a water. This process calls for anywhere from 35-60 minutes.

☆Death had no part in me getting ready for the day. Death is not a piece of my life. Just as CF doesn't control my life.

I face death in the face every morning and tell it to go back to hell. I talk to death every night and tell it that I have kicked CF's ass for one more day and that I will see death again in the morning.

When you get worried around the "death talk" or thoughts of dying. Think about this morning and tonight. What you do in between is what counts. And then simply smile and tell death you are not afraid of it you can overcome that thought and that's anxiety.

Never be in fear or fear will ruin your life.
  Sandi

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There is a Reason

My mother told me years ago of an old wives tale she heard that said something along these lines, "unborn babies pick their parents." I believe that there may be some logic behind that and this is why.

I do not think that a child with CF would be born to a parent that could not handle it. At times it takes everything you have deep inside of you to be strong for your child and hold their hand, at times it gets to be unbelievably hard. When you find out you are pregnant, it is normally the happiest and most terrifying moment of your life. A moment you never think will be told that your baby is sick.

♥I deeply believe with all of my heart, I picked my parents. When I was born the doctor told my mother that we had a very strong bond that was unlike anything he had seen before. This is very true! Not only with my mother, but with my father as well. They are my rock, my life, and half of my support system! They have helped me in many ways they will never understand.

On that note, I know I have also done a lot to teach my parents a few things in this crazy world. To change their lives, open their eyes a little more and simply lead them to love life for every moment that we get!

When we are born all we have are our parents to guide us, to teach us, and to help us become the people that we are. I personally believe if you were not capable of being a parent to a Cystic Fibrosis child you wouldn't be.

It takes a strong person to raise a strong person. If that makes sense at all. No parent should have to live with the idea of having to bury their child especially shortly after they are born. This is something every parent fears and even more so when a doctor tells you things like "Don't get attached to your baby she won't make it to be one year old." Knowing these things and hearing the worst of the situation parents of a Cystic are faced with so many challenges directly out of the gate.

♥It is my parents strength and determination that I am as "strong" and positive as I am today.

Although you may not know it or your babies may be too young to let you know or too proud to say it you're an amazing person and parent if you are always there for your CFer, with love and encouragement. Never doubting or belittling their disease. Always helped them up when they were down and gave them strength when they were weak. That is all we as children really need.

♥I have written a blog about my parents before with small tips which of course  you can read CF Parents. Yet, I believe this one is a little different.

Now, I am not religious, however, I am very spiritual and I do believe things happen for a reason. There is no one soul that is on this earth for nothing. What that reason is we may never know. It is what we know and learn from people that are the surprises in life. 

So when you think it may be a little to much or you think about CF and wonder why just know you are here to help someone, somewhere, at some time in the world. Even if at this moment it may not be clear.

Never Second Guess Your Gifts,
   Sandi

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