Feeling broken
Barely holding on
But there's just something so strong
Somewhere inside me
And I am down but I'll get up again
Don't count me out just yet
Cystic Fibrosis is a pain in the ass, I am pretty sure I have said that before. I can't help but let my mind go all over the place when I am hospitalized and seeing things in a different light than most.
I am seeing so many beautiful photos of healthy CFers saying "This is what a terminal disease looks like". When in reality, I personally don't think that is what CF looks like, at least not in my eyes. When you are healthy and taking professional photos without showing the actual effect of CF, then that is not what the terminal part of the disease is. Being healthy is the BEST part of being a Cystic Fibrosis patient, but I don't think it really cracks the shell to see inside of the disease.
To me that is the good side of someones health what I have seen in the amazing photos. I love being able to feel great about myself and have the strength to show the world that I am stronger than my disease, because the moments I am modeling I am somewhat healthy, or appear to be. One reason I love to model because I can look like a million bucks even if deep down I don't feel like it.
Now, please don't get me wrong, all of these photos are amazing and beautiful, I have some myself. They make an awesome statement to show that we are not CF. That our disease doesn't define us and I agree with that 100%. I do believe the symptoms and the downfalls IS what really defines Cystic Fibrosis.
However, Cystic Fibrosis is not "healthy" or normal looking. I think I may have solved the age old questions as to "what does CF look like?" That many of us are asked about because we look healthy when we are not wearing oxygen or are in the hospital.
In my opinion or conclusion looking like you have CF is when CF takes us by the balls and shakes us up. Puts us in the hospital or on life support. CF is us taking hundreds of pills and doing so many treatments a day. CF looks like dark circles sunken into our faces around our eyes from sitting in a hospital bed for 2 weeks straight feeling like hell. Seeing out ribs because we can't seem to maintain weight. Or lugging around an oxygen takes or a feeding tube day by day. CF looks like the tombstone of the 23 year old who lost their battle too soon. It isn't photoshop, which I am guilty of making my eye circles and scars go away. It isn't posing sexy on your good days or hiding your o2 long enough to take a photo.
CF is shown on your worst days, the days you are your weakest. If you are wanting to show the world what it looks like to have a terminal disease lets be brave and post those "Raw CF Selfies". Take the photos that are not pretty and are at your lowest points in life and show the world how terrible this disease really is and what it truly looks like. It is time to show that CF isn't rainbows and sunshine because in photos, TV shows, and social media everyone looks fine. It is easy to fake looking better than we are. I am proud to say I am pro at it by now.
It would be like the rich guy who decides to live as a bum until you read his obituary to see he was very wealthy. Instead of seeing the true man, you only saw the man he wanted you to see. -(Referencing the man as a CF not an actual person)
Keep in mind this is MY opinion on what I believe CF "looks like"
Let people know that we all have dreams and goals and some of us are never going to accomplish them because of a disease they didn't want from the day they were born and now that they are gone too soon. Knowing that I have goals of my own that I may not be able to accomplish, because I am just getting sicker with age. I don't count myself out just yet. I am still pushing myself with every breath I take to reach those goals. As hard as it may be I still try to get things done. I am not completely defeated yet, although some days I do feel like I am, and honestly can't say for sure that YEARS down the road that the possibility won't be there.
With that said I sometimes feel like I am a worthless person and a waste on earth because of CF. I feel like I am not accomplishing anything anymore and everything I was going to do has been done. I sometimes feel like a waste of space in this world not contributing to much of anything now days. Not helping my husband with the financial side of things, because I can no longer work. This wasn't always the case, but it has been more recently for me. I know that I am just going to be getting worse and the downfall is that my heart breaks more and more with every breath.
I know I am simply rambling and I doubt I am even making sense at this point. I know I have probably upset a lot of people who may be reading this and I apologize for that. As I am not trying to be negative I am just trying to explain my thoughts about everything going on in my life and things I have seen in the past few weeks. I guess this is just me looking into a nice big mirror and finally realizing that I have things that will just not get accomplished no matter how hard I try to get them. It really makes me think about life and its purpose. Makes me wonder a lot of things.
What I know for sure is that no matter what I am not giving up and you have not heard the last of me even if I am broken!!
Broke Strength,
Sandi
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| Hospital stay for 3weeks, doing a PFT |
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| Healthy Photos |