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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