I wake up and put my feet on the floor take a deep breath and cough for what seems like forever. Coughing up blood mixed with the thickest nastiest mess anyone could ever imagine. As soon as I wipe the sleep from my eyes by body is demanding, unforgiving, and inconsiderate. No, I don't have flu or am I catching a cold. This is what happens every morning of everyday and continues on for the rest of my day.
☆Multiply that so called normal morning by 5 and you will get a glimpse into what it's like when I have a CF exaserbation. Heaven, help me when it's pneumonia or my Burkholderia Cenocpacia flairs up! That is a entirely different form of hell eating my soul alive.
So, everyday I put a smile on my face and everyday at least for the majority of the day that smile is a real one. It isn't forced for the most part of every day. I mean really what do I have to not be happy about? I have an amazing husband that would walk to the center of the US just to grab a rock out of a cave for me if I wanted it. I have parents who have devoted their lives to making sure I was as healthy as I could be and that I see each milestone birthday. They made sure I never went without no matter how much they went without when I was younger. Honestly, they still do this to a point. I am blessed with my family and the hand full of friends I know I can count on. I have things that people would kill for and I've done so much in my short terminal life that most people will never be able to do in an entire life time. I have it made! I honestly couldn't ask for anything more!
But, then I do! I ask why? At least a hundred times a day!
☆Why, do I need all of these meds?
☆Why, am I the one in my family that was blessed with this terrible disease?
☆Why, do I deserve to feel this way?
☆Why, does my heart break everytime I see pictures of my nephew and niece having babies, yet I can't.
☆Why, do I think about my funeral at least once a day?
☆Why, can't I just wake up and the pain be gone?
☆Why, am I 28 years old needing to wear oxygen to live a semi normal life?
☆Why, am I this young on hospice care?
☆Why, must I fight for pain relief and medication when I'm on hospice care?
☆Why, are the odds of me dying before having a baby really high?
☆Why, does it hurt when I breathe, cough, or yawn?
☆Why, do I need to do treatments for more than 3/4th of my day?
☆Why, was I forced to drop out of college, because of the amount of time I was in and out of the hospital?
☆Why, is the last one fair?
☆Why, did I have to spend most of my adulthood in the hospital?
☆Why, do I have to miss the milestones in my family and friends lives, because of hospitalizations?
☆Why, do people have to stare at me when I'm out in public wearing oxygen?
☆Why, do people who get angry with me automatically start attacking my disease and not my opinion?
☆Why, will NONE of these questions ever be answered? At least not legitimately.
☆Why, me? I didn't do anything wrong to deserve to be sick. I was an unborn baby cursed with bad lungs and a lifetime of constant battles to live.
☆Why, do I have a hideous scar covering my entire stomach?
☆Why, do I have to eat so much that food almost turns my stomach just to maintain a weight above 100lbs.?
☆Why is it that I seem to be getting worse and the worse I get the less amount of friends I tend to have.
☆Why, do I always feel like my head is going to explode?
☆Why, do people give me fake sympathy smiles and pity conversations?
Why?
I can go on and on, yet I will never get the answers. No one knows the answers. It is something that will never have an definitive answer. It's not black and white. It's not even grey. It's a big blur of mixed emotions, pains, stress, depression, happiness, hope, strength, and so much more. That will forever leave me stumped!
You can be happy and lead a positive life, yet still have all of these questions going on in your head! Still have bouts of sadness and depression. There is nothing wrong with being mad at your disease. There is nothing wrong with wanting to throw in the towel when things get so hard and you can hardly walk, as long as you don't actually do it.
☆That's where the strength truly is. Knowing how easy it would be to throw your hands in the air say "The hell with it I'm done!" but you don't. Instead you keep pushing on with a smile on your face! You smile for all of the good things you DO have going on and keep hoping that one day some of those questions can have an answer.
Wishing for the answers,
Sandi
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