Its Cystic Fibrosis awareness month, and this disease dominates my life. I mean its to the point I get on Skype and no one thinks twice about the coughing and clearing until it gets into full on coughing fits. Its also just doing neb treatments mid games. Yes I play a lot of video games, its an escape from the seriousness of my life.
What no one ever really see's is the contest fight to stay out of the hospital, the hours of treatments and ll the chest PT that comes with this not to mention a lot of pills. My lungs are not in a great place at we our constantly monitoring them. Superman predicted 32 as the age my lungs will need swapped out and sadly we are right on track. No one ever wants to here that but this is just part of my reality. Though I dont let this stop me, I refuse to allow that age to be a deadline of sorts. It was almost as if I was accepting a challenge to prove him wrong. Not long after I was told this and the topic of transplant came up, a good friend of the families told me, when you come to this road make sure your reason to live with is not so your family does not feel loss, dont do this for your family. Find a reason to do it for you.
So my journey started, a journey of self love, and what I am truly fighting for. Some days its trivial. Like um its ranked season I cant be in the hospital. To I want change. I go in to the hospital and met with "cant your parents bring you something to eat your diet is complicated." I get treated as if I know nothing about my disease and my life until Wonder Woman pops in and there like oh!! Now we get it. I want to be a published Chef (working on this) and I want fully master yoga and Qi Gong. I want this to be allowed in hospitals. I want people to understand the importance of meditation, and how all this has helped me improve my health.
Every single morning you will find me with my oxygen on in the sunroom doing yoga, or well fighting a Rubes for my yoga mat so I can do yoga. You see me cooking dinner practicing Qi Gong which helps me focus on my breathing. You see Cystic Fibrosis isn't just I need to clear my lungs. Its I need to get oxygen in them, I need to eat a healthy high calorie low fat meal, I need to keep my body strong and healthy so when the time comes I can accept my new lungs into my life. Yes most days I cant stop coughing but I still try. I will never allow CF to be a reason I stop. Its just not a good enough excuse to put my life on pause. Its the reason I keep pushing forward. Its the reason I am who I am.
While I am working on keeping my body at top shape, I also need to keep my mind clear and focused. Some days its hard. You see my past post with the tears because I do not always feel strong. But its absolutely OK to cry, as long as your not giving up. This disease can take a toll, it can be a heart breaking experience but its also a blessing is disguise. It has taught me so much about life, and how precious time is. It tough me that sometimes the best thing you can do is lay on your yoga mat with a kitten and just love her. Be present, be open, and just love. Life is way to short for anything else.
Love Y'all
~Poppet
What no one ever really see's is the contest fight to stay out of the hospital, the hours of treatments and ll the chest PT that comes with this not to mention a lot of pills. My lungs are not in a great place at we our constantly monitoring them. Superman predicted 32 as the age my lungs will need swapped out and sadly we are right on track. No one ever wants to here that but this is just part of my reality. Though I dont let this stop me, I refuse to allow that age to be a deadline of sorts. It was almost as if I was accepting a challenge to prove him wrong. Not long after I was told this and the topic of transplant came up, a good friend of the families told me, when you come to this road make sure your reason to live with is not so your family does not feel loss, dont do this for your family. Find a reason to do it for you.
So my journey started, a journey of self love, and what I am truly fighting for. Some days its trivial. Like um its ranked season I cant be in the hospital. To I want change. I go in to the hospital and met with "cant your parents bring you something to eat your diet is complicated." I get treated as if I know nothing about my disease and my life until Wonder Woman pops in and there like oh!! Now we get it. I want to be a published Chef (working on this) and I want fully master yoga and Qi Gong. I want this to be allowed in hospitals. I want people to understand the importance of meditation, and how all this has helped me improve my health.
Every single morning you will find me with my oxygen on in the sunroom doing yoga, or well fighting a Rubes for my yoga mat so I can do yoga. You see me cooking dinner practicing Qi Gong which helps me focus on my breathing. You see Cystic Fibrosis isn't just I need to clear my lungs. Its I need to get oxygen in them, I need to eat a healthy high calorie low fat meal, I need to keep my body strong and healthy so when the time comes I can accept my new lungs into my life. Yes most days I cant stop coughing but I still try. I will never allow CF to be a reason I stop. Its just not a good enough excuse to put my life on pause. Its the reason I keep pushing forward. Its the reason I am who I am.
While I am working on keeping my body at top shape, I also need to keep my mind clear and focused. Some days its hard. You see my past post with the tears because I do not always feel strong. But its absolutely OK to cry, as long as your not giving up. This disease can take a toll, it can be a heart breaking experience but its also a blessing is disguise. It has taught me so much about life, and how precious time is. It tough me that sometimes the best thing you can do is lay on your yoga mat with a kitten and just love her. Be present, be open, and just love. Life is way to short for anything else.
Love Y'all
~Poppet
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