15 CF Ugly Truths

May is Cystic Fibrosis Awareness Month and the things people don't tell you about CF is what this blog is going to be about. Please note everyone is different not all CFers feel this way or have the same issues!

1. Cystic Fibrosis causes horribly bad smelling farts. Some that will bring grown, harry, bikers to their knees and clear a room.

2. All day long we have thick mucus coming out of areas we never knew we had. Ears, eyes, lungs, nose, poop, and even naughty parts.

3. Sex is very difficult, time consuming, complicated, and sometimes you need to wear oxygen just to attempt it. Thankfully, once you find the one, they won't mind.

4. Walking for long distances is almost out of the question at times. Most of us, however, are too stubborn to admit it.

5. Talking about CF for the first time with someone new is nerve racking and most of the time we make it sound less like a horrible, body controling, death taking disease and make it sound like a sweet puppy nice and fluffy.

6. The words "poop" or "stools" are a normal conversation for us! No, it doesn't bother us when people say it and rarely do we laugh at that word.

7. Eating a lot of cheeseburgers, pizza, and fatty foods looks like a nice thing for healthy people. The reality is shoving so much food down our throats is horrible sometimes even nauseating.

8. EVERYONE looks at you like you're a horrible person when paying for things with an EBT card or an SSI debit card. Why? Because people are judgmental assholes who see a "healthy" person doing anything in life and have to look down upon what they do not know!

9. Sometimes we can't hold it in and leave greasy stinky poo marks on couches, in pants, and in cars. It is more embarrassing than anything but it is something that just happens and you bear to roll with it.

10. Growing up we get made fun of and called "anorexic" just because we are small and can't absorb anything.

11. We normally know every nurse by first and last name. Most are even friends with us on FB. We can also run most medical equipment, pronouce all medications, and talk a nursing student through their day.

12. Being that we produce so much sodium, showering after a hot long day is the worst. Water washing away the massive amount of salt off of our skin makes it feel/taste like we've been in an ocean for a month.

13. Getting enough sleep is very difficult resulting in canceled plans a lot more often than we wish. It is almost a party just to get ready to go somewhere. Then, once you get to where you are going, you are ready to leave and go to bed.

14. Multitasking should seriously have a gold medal as we can function 100% while doing nebulizer treatments. Text, chat, FB, twitter, meds, homeworks, and the neb at the same time. Yep, golden!

15. Most of us don't really see ourselves as "sick" so we do not act like it. We never want pity or sympathy for having CF, but normally never say when it bothers us.

I think that is plenty I am sure I could keep rambling on and on for hours, however, I think this is fine.

The ugly truth,
   Sandi

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When life gets hard!

Breathe in and out deep breaths slow and steady breaths.

Was that easy for you to do? When you breathe everyday do you ever think about it? Do you ever say to yourself "Wow, I am a good breather that isn't hard at all" I honestly doubt it.

Did you know as you read this blog there are thousands of CF patients on oxygen right now helping them breathe because they can't.

I am included in that group of Cystics. Doing my last treatment of the night, sadly having to constantly wipe my nose or sniffle because of the running it is doing thanks to the tubing to my O2. Sitting here looking like death could knock at my door at any minute. My eyes are so sunken into my face, I am wheezing more so than not, and catching my breath is such a struggle. Yet I have people who love me, tell me every day that I am "beautiful" and support me through this uphill battle. I have a support system that would bring me the moon if I wanted it and am so thankful for that each day. Even through my insecurities, hard times, and doubts.

I know that every night when I go to sleep, my man will tell me he loves me and kiss me Goodnight. Every morning when I wake up, he gives me good morning kisses and my mother will send me a good morning text followed by a phone call at lunch. Every day my dad will make a phone call just to check in. I have the most amazing best friend who checks on me at least once a week and more if she can. I know when it is said and done, I can breathe easy knowing they are here with me and for me.

I was terrified in my last blog about being alone when I get that call for my transplant. However, I realized I am never alone. Especially with my friends, family, love, and even my CF community!

Please, no matter what you may go through and how hard it is for you in this fight. Remember, it is hard to breathe for us, but we are not alone! Never will be!

I can say this because I am here for all of you! Even if you have a harder life, and possibly you don't have the best support system and you feel alone a lot more than you should. Know I am always here for you to help you through the hard times of your life! Cystics, parents, friends, or even healthy people who need someone to listen. Don't hesitate to reach out to me! I will listen and support you every way I can!!!!

Always Here,
  Sandi

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Skinny or Not

"Eat a cheeseburger!" "Stick skinny" and "Anerexic" are words I have heard all my life. Being self conscious is part of life as a female and even as a male now days. Being a female with CF I struggle with more than just the super model society ideals of the female image.

Growing up with a disease where one of the major issues is malabsorption, keeping up with the "norm" is unbelievably hard. People seem to think too skinny is bad, but not skinny enough is worse. The thoughts about a perfect body image is so hard to maintain.

Going to school and eating as much as I need to in order to absorb nutrients, I have been subject to ridicule and comments of how "people" girls mainly wished they could eat like me. What they do not realize saying that, is  that I have already choked down a full breakfast with two snacks and shakes before lunch. What they see me eat is forced down just to stay above 110lbs.

To the normal eye that sounds and looks amazing. What you don't know is my stomach hurts from being so full, I have a food baby 90% of the time, and the thought of extra snacks turns my stomach.

If they add on steroids to my medication list or any medication that has a hunger side effect I look like a chipmunk storing nuts for the winter. My face becomes round and chubby, my eyes sink into my head, and I have two chins. All while my body stays the same size and I look like an odd shaped strawberry that was picked too late.

Of course, this is another appearance issue that people overlook.

I have even had the pregnancy question before just because of the side effects of some medications. When I started working at Hooters I was introduced to the phrase "Muffin Top". Don't get me wrong that outfit is hard to rock perfectly, however I lost weight because of that comment.

The strive to be perfect is over rated, the focus on popular body trends is exhausting, and the photos back and forth are getting to be embarrassing no matter which end of the scale I am tippy toeing around.

Something I have recently found is that I feel beautiful in my skin weather I weigh 100lbs or 140lbs. Which I have never been that high in numbers but still.

I have heard people say my whole life that weight looks good on me. All I can think is, if I said that to you, would you be happy? Would you be excited to have to eat that 1,000 calorie snack before your dinner? Probably not.

People seem to ignore the fact that putting on weight for me is a sign of struggle. The typical thing is losing weight not gaining. In the eyes of Joe Public I should be aiming to fit my 00 or youth sized jeans and to be honest that is difficult to conquer even more so when you have no energy to eat extra, need exercise, and have no will to "gain" anything.

With all of that said, the importance I have been able to realize is that today I had a photo taken from a behind view and I LOVED what I saw. I wasn't so skinny that I wanted to cry, I didn't have extra weight that I felt horrible about myself, and I didn't look sick for the first time in my life or at least not to me. Which is to me the most acceptable I have felt towards my own body figure in my life.

Never let society judge what your figure should look like. Only you need to be happy with you!

Eat, Gain, Smile,
   Sandi

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Being "Alone" with CF

We all get depressed every now and then if I said I was positive all day, every day that would be a lie. I don't believe you can be human without experiencing some hard days.

As I lay at 4 in the morning tucked into my hospital bed, I can't help but think about some of the things that have been bothering me lately and I have decided to share these thoughts.

Sometimes I sense like my health is not only an inconvenience for me, but for everyone around me. I hate thinking that I want to stay out of the hospital even when I am super sick just so it doesn't interfere with the schedules of the ones I love or put me in a lonely state of mind. I want to attend all of the get togethers my girlfriends have, the elimination dinners, parties for this and that, fundraisers and walks, and even the family reunions. I never want to miss them, but sometimes I can't help it and lately that "sometimes" has been more often than not.

It has gotten to the point that I am no longer asked, invited, or even told about events that people are having because they just assume I am in the hospital and don't want to bother me. I really have no reason why or an explanation other than the feeling that I am letting people down.

By now I am 26 I have done this hospital thing for my whole life, more so over the past 15 years give or take. So my friends and family are "used" to it. The calls stop, the cards drift farther apart, the flowers never get ordered, and visits I can pretty much forget about. I may get a text every so often from someone asking if I am "in or out?" With the normal "feel better miss you" comment. Followed by what is normally nothing else said.

Once people get used to the "normal CF clean outs" of antibiotics and know that you're ok, they don't seem as concerned as they first were the few times after they've met you.

The first few times of hospitalizations and new friends is an interesting experience that I wish would never fade. They seem to worry a little more because they are unaware and curious about your health. Once you are in for the hospital the third time they seem to fall in suit with everyone else.

Sitting in the hospital 24-7 for 14 days or longer alone is the most alone you can ever be.

The medications don't help, they either make you hungry or not eat at all. They make your thoughts race and your heart beat, they either drain you or give you energy without an outlet for that energy. They make you sleep for days or not even for twenty minutes, and sometimes make you cranky and you lash out at people. Sitting alone is hell, waiting for a text is heartbreaking, hoping someone who doesn't work in the hospital opens your door is depressing, and phone calls are just terrifying because the only reason people pick up a phone now days is for bad news.

So with all of this going on you can't help but wish things were a bit different. Wish that the hospital stays could be handled differently or that people would understand the "fear" of being alone.

I can't speak for any CFer or how they feel or what they go through, but I can speak for myself and the way I feel from time to time. I wish there was a pill that I could take something quickly, anything really that could keep me home out of the hospital. That would let me attend the get togethers, not interfere with work schedules, school, or families and be able to be there in person not just in heart!

Of course you'll always have the closest ones to you there for you when they can be. However, even in my situation my hospital is a 30 minute drive from my house so I try to tell my fiance not to come up but on the weekends. He normally works 7am-8pm Monday-Friday and we have animals. So to ask him to be by my side the whole time is selfish and horrible at least to me. He calls and texts all day long and makes sure I am ok. My parents come up whenever they can and always call. I have two friends no matter what who make time for me and are always on point. I know that my family is one of the largest Italian families in our town yet my mom, dad, and sometimes sister and grandmother are the only ones I see. Other than that I see nurses and doctors all day long. However, sometimes that isn't enough so what is that sounds stingy or selfish.

Even if we are fine, are not at the end stages of our disease, not having surgery, or are not in the ICU, we still need to know we are loved and cared for even if it is the "same ol same", "typical", and "normal" routine.

Please remember to show the CFer in your life how much they mean to you! Even if it is the 20th time they have been admitted in a year stop and say hello, gave them a call, send a card, or do something out of the blue and order a pizza for them. Don't let them think they are alone because the hospital is the worst place to feel alone.

Comfort is at your finger tips,
   Sandi

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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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