Well, Tim McGraw said it best. That when you get the news that you can know the reason and so called time frame of your death you panic, plan, and do more.
For me this has been how I've lived my whole life. At least from the moment I understood that if the disease I was living with, my disease, could take the life of my cousin Rosie it could do the same to me in the blink of an eye. Mind you I was very young and didn't understand death until that time, but that is when I understood. It was then that the realization of Cystic Fibrosis, hit me. The raw fact that CF can take you at any moment. Is was making it easier to live each day as it is your last.
☆At least that's how it is for me, hints all of the goals I have been able to accomplish. Rolling over and listening to these doctors wasn't in my path. From a young age if I set out to do something, I did it!!! CF aside.
It has almost been a year since I was told I had 6 months and that I was on my last breath! Since then I've been pushing and pushing to make sure that statement is not true. Despite what the numbers, levels, and tests say I am still here. I am still fighting. I still and always will be here, smiling!
According to my PFT'S my FEV1 level (lung function) is, or at least the last time I was tested, was 16%. I have had so many question if that's true and how I can be doing anything with such a low lung function. I have had many say I am a fraud or and attention seeking by making up numbers. Well, first off I post almost all of my PFT'S from the doctors so you can see the numbers in black and white. Secondly, I have no one to prove a thing to. I am here for you, your children, friends, or even spouses to share what most won't and hopefully help you to understand CF a little more. Nothing more and nothing less do I seek.
☆The difference between me and someone else with my levels and I mean no disrespect, is my personality. My will to never give up, constant positivity, my aim to keep reaching for my brass ring, and to never give up on your dreams is always there.
With that said, I did discover that I was slightly dependant on my oxygen, which I advise everyone to be very careful not to let that happen. As it can happen fast and you have no idea that it has.
☆We are ALL different and our bodies always act differently under pressure and changes. Do not stop using ANY medical equipment without consulting a doctor.
What I mean by this is with my upcoming photoshoot for, INKED Magazine I have been pushing myself very hard. Pushing to stay in shape, to be able to have the energy to finish a photoshoot without having multiple issues, and to simply have it done. I feel like hell at the moment and yes, my body HATES me. However, for me once I get there and the shoot is done it will all be worth it in the end and I will be a little healthier for pushing so hard.
☆I do not recommend pushing yourself to the point that I have unless you have a GREAT support system who can tell when you need to stop for a bit.
As I am doing this I have slowly noticed I do not need to wear my oxygen 24-7 anymore. I can go for hours at a time without it on. Yes, I am slower and yes, it takes me longer to accomplish little things, but I can do it.
☆This is something that last year would never have happened. So, that's progress.
I believe that when I have a goal to reach for,one that is in my grasps such as this photoshoot, I tend to push myself further to make sure it happens. In the beginning it is torture, but in the end it is magaical.
Hell, this time last month I was unable to walk my whole house or shower without wearing 5 liters of oxygen. Now that I have a shiny future ahead of me to grab and conquer I am slowly making my lungs better on my own.
☆Basically, what I am saying is even though I was told the end is near, I am on hospice care, and am sick I know I can live a lot longer. Because, this photoshoot is real and it is coming up in the near future, Oct 10th 2015 to be exact. I am going to fight for that future until I achieve everything I want to do. I'm not leaving this world until I'm old and grey!
Never in a million years let numbers in a computer depict your life worth. Only you can do that! Only you have the power to say, "I think I'll go for a walk outside now" or "no, I'll lay here. I don't. .. [insert excuse here]" Sometimes pushing yourself a little more than normal is amazing for you in the long run!!
☆So for me this past year has been living like I was fighting to live. Not that I was living like I was dying by any means.
Everyday has been an adventure and some days it's hard as all hell to get out of bed and trust me some days I don't want to smile, and the thought just makes me want to punch myself. Then once I re-evaluate myself and realize how far I have come all I can think of is all of the teens that struggle in life with so much ahead of them.
Always know no matter your obstacles, if you have a smile on your face, fire in your soul, and determination in you heart anything can be done. Extra hours, days, weeks, months, and even years can be added to your life if you just get out and LIVE!
If I die young,
Sandi
Sandi
