A Non-Medical Breakdown of CF "Bugs"

You never know what it is like not to be able to breathe on your own until you have no other option. Let me tell you breathing is a gift cherish each and every breath!!

Photo of the gunk in my lungs from my broncheoalveolar lavaga

★Staphylococcus aureus infection 
★Pseudomonas aeruginosa infection

★Burkholderia Cenocpacia infection

★Aspergillus fumigatus
★Pneumonia
★Bronchiectasis
★Mucoid Pseudomonas Aeruginosa
★Gram Negative Rods
★Gram Positive Cocci IN Pairs

★MRSA

Holy mind screw batman! What does all of this mean? I swear it looks like nothing but letter after letter just to confuse people. However, it may seem that way, these words can harm us and even kill us. To an average person simply attempting to read these million dollar words are  almost impossible. To tell what they are and how they effect us is even more difficult. However, to a Cystic Fibrosis patient these are normal conversation words. 

If you are not a CFer but a family member or friend here is what you actually NEED to know about these bugs as they are very complex and even I don't fully understand them. I will point out the important parts. 

★No, I am not breaking down the medical aspect so don't think I am about to put out a bunch of confusing medical information.

These "bugs" or organisms that I personally have, would like to call my lungs home. Treating them like a two story condo with a detached garage. The little buggers like to have ragers from time to time making my life a living hell. Each one of these lovely little bugs can put my hoohaa in the dirt faster than anything and can become active out of no where.

★One moment we can be 100% and then ten minutes later, all it takes is the wrong cough, scent, temperature change, or deep breath in or out and we are ready for IV antibiotics. 

When it comes to these bugs CFers are not contagious to our loved ones but according to research we are contagious to other CFers. Which is pretty crappy because it is nice knowing someone who actually understands and knows what we go through. I have a few close "Cyber Cystics", however, I have yet to be able to actually hang out with any of my CF brothers and sisters and doubt I will get to do so. 

It is almost comical to me when I come in and culture one of the many bugs listed above how quickly it can control every aspect of my life. Sometimes we culture even more than one of them at one time, meaning our lungs are getting their ass kicked Bruce Lee style. However, which one it is normally doesn't even matter (with the exception of Burkholderia Cenocpacia I will touch base with that deadly bug in a real medical break down blog soon).

Most of the time your body is using most of it's energy to breathe, eat, walk, work, and stay motivated. So when the bugs flair up it just makes things that much worse. Once you have cultured any of these bugs it makes it harder to get them to go away. As the bug builds a tolerance for antibiotics making it harder to manage and resulting in longer hospital stays.

Which keep in mind once you culture any of these bugs you will always carry them around. They are like that bad haircut you had in college that you can't get away from thanks to #TBT. Just like those haunting photos the bugs linger around forever.

★At first when I started getting sick enough to be hospitalized, I was 13. At that time the course of antibiotics was only a 7 day stay. Then it started taking 10 days, up to 14, and here we are at 21 long, mind numbing, life stopping days of IV antibiotics.

Keep in mind all CFers are different, our bugs we catch and grow are different, our responses to treatments are all different. As far as the list at the top of the blog, those are personal to me. There are other bugs, more bug, and more strains of the same type of bugs.

When people who are close to a CFer think of CF they don't typically think of WHAT it is that is destroying our lungs. They normally just think mucus and lung function is what it is all about. However, this disease in itself is so complex there really is no cut and dry reason for anything that is happening to us or how we respond to the bugs we catch. 

I can only speak personally on this however, when I am in the hospital I may not be expressing ALL of the health problems going on. As I tend to think I am overloading my family and friends with CF and that I am a bother at this point. By the 8th or 9th hospital stay for the year, I tend to stop talking about it for normally two reasons. 1. I think you are tired of hearing about it or 2. I hope you will just say "Ok I will be here if you need me". Most of the time it is the 1st one because in my case, and I am sure others as well, not many people like to visit a hospital over and over when it looks like the same ol same and nothing is really TOO bad from the outside looking in. 

Never assume the hospital stays are just normal routine things. Go see your friends no matter how frequent they are hospitalized. Mental health needs to be up there with physical health. It is love, friends, and an out pour of support that keeps us mentally healthy! 

Lonely in Hospital Hell,
  Sandi 

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Positivity & CF

When I don't have the energy to do something for days or even weeks on end I get depressed as most people would. I start to think about my life and feel like I am just letting time pass me by. I feel like I have not amounted to anything and that my body is slowly giving up on its self. It is that moment that I think my life has nothing to offer to anyone, that I am my weakest. The lowest of times for me is thinking I am going through life without having a purpose or anything to show for it.

★Then I snap back to reality and realize ALL of the amazing things I have been able to do and still are doing. I may not be at it all day, every day like I once was. I may not have a job to where I am up and going every day. I don't have the friends I once had to keep me busy and I am no longer in school to keep me motivated. I don't have a sport or a hobby to stay stimulated throughout the days. What I do have is so much more than that.

I have the memories, the accomplishments, the time, and the strength it took me to get this far. Looking back, I feel like everything I have done is almost a dream. How can one little sick girl do all of these things at such a young age? Things that I was, "never going to be able to do" according to doctors. I sit down and talk to someone about my accomplishments and sometimes I feel like I am making it up. Although I know I am not, I was there. I have the photos to prove it all. At times it seems so surreal to me.

Just the thought that I set a goal at a bar I was working at when I was 21 to work for Playboy. I went to CA and I did just that! When coming back from Hawaii at the age of 16, thanks to the Make-A-Wish Foundation. I told my parents I would send another kid to Hawaii  and with the help of friends, we made a little girls wish come true! Wanting to raise awareness for more than myself, more than CF, but for several silent diseases, making that happen was such an amazing feeling. Modeling and being published in magazines was a dream of mine for longer than I can imagine and it actually happened and is still happening to this day. Marrying the man of my dreams is something every little girl wants and this year that happened! There are so many things I just never thought would happen but they did!

★How is that possible for someone like me? Someone who is sick all the time. Someone with scars everywhere. Someone who was told not to even try. Then I realize I am strong, powerful, and motivated enough to get things done. Once my mind is set on something I get it done.

I just continue to remind myself that no matter what anyone has to say I can and will do whatever I set out to do! It is hard to not let yourself, get caught up in depression when dealing with CF, or any life threatening disease. If you don't focus on positivity in your life, you can easily go down a bad path. Your attitude on life and how you are going to live reflect each other drastically. It has everything to do with how far you can go in life.

★Never listen to an expiration date a doctor gives you. If you are given a statement that starts with "never", "won't", or "can't" don't just take it and fall down that rabbit hole. If you believe in yourself and in your heart you will be able to do anything you put your mind to.

Take it from me. I may be slower than I once was, I may have more down days than good. Modeling, volunteering, friends, and family outings get pushed aside more so now than ever, but I won't ever stop pushing myself to the limit. I will never stop trying to grab that brass ring and be on top of the game. My life will not be over until I take my very last breath.

Positively,
  Sandi

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