So Batman texted me the other day and asked me if an old man knocked on my door with a cure for CF would i take it. Now there was a bit of a scenario behind this but it made me think of 2 different scenarios myself.
A cure for CF would be amazing!! It's what we all fight for. We live for the day were we can say there if a cure found and the following generations do not have to go what we go thru. But here is the thing. There is a generation of us were the damage is done. And I asked myself how would I truly react to this. Will I still have a fight for transplant?? Will I still be able to make the list if there is a cure found?? I mean the damage is done. My lungs are poor and if I can't reverse the damage and my lungs are gonna be ruined anyways whats the point for ME to have a cure, but I would accept it for the kids. As much as I love life and love living if you give me a cure tomorrow my lungs are still weak and full of junk and bacteria. Now if I had the chance still for new lungs but there would be more progressive damage I would jump at the chance for a cure!! It would be the most amazing thing in the world. But I wouldn't just want it for me. There are so many kids with this disease that do not get a chance at life. Medical bills pile up, and there's always more meds to take and more doctors to be scene. It really is never ending. Me?? I had my chance at life, now I want a second chance. I want get back all the years I have spent sick. To get back to me passions in life and do what I have been doing all this years but on a larger scale. Get not only CF awareness out there and help raise money for the foundation which will fund research, but for POTS, MCAD, and food allergies. My time is dedicated to all this. We need a cure!! Not for me but for the generations to follow, for people who fight this day in an day out. For the parents that watch there kids breaks down and get sicker every single day. For our family members that watch us fight for the next day and sometimes the next hour. For the people who we've never met that fight for us in ways we will never even begin to see. THIS is why we need a cure. Not so some wild kid can take life for granted, for the families that just want to see their relative live!! I mean actually live and enjoy life.
Many people close to us know what are fate is, and it's scary to think about it. But I have always told Wonder Woman I would be blunt with this blog because I am no other way. Our reality is we will need new lungs or other organs as well to get a second chance life. 1 in 3 people with CF die waiting for transplant and it's heart wrenching. I would not wish this on anyone. I see how my life affects people. I see how my decision about my health affects people. I use to tell people I am alone in this battle but I am not. People truly worry they will have to live with out me and I will do everything in my power to prevent that. I don't care what I go thru. I will fight for my second chance or just my chance to live. To love, and to follow my passion in life. People want to save me but have NO idea how to even so much as help me. Me personally well you can't, just let me know you love me is all you have to do be there for me. But you can help others, the ones much younger then me or not born yet. You can donate to the organization to help find a cure, or better treatment. You can be a donor. You never know who you can help!!
Do I want a cure?? Yes but I also want the next generation to have a chance at life and to fully live and breathe to their full potential. Also say a prayer for us!!
Love Y'all
~Poppet
A cure for CF would be amazing!! It's what we all fight for. We live for the day were we can say there if a cure found and the following generations do not have to go what we go thru. But here is the thing. There is a generation of us were the damage is done. And I asked myself how would I truly react to this. Will I still have a fight for transplant?? Will I still be able to make the list if there is a cure found?? I mean the damage is done. My lungs are poor and if I can't reverse the damage and my lungs are gonna be ruined anyways whats the point for ME to have a cure, but I would accept it for the kids. As much as I love life and love living if you give me a cure tomorrow my lungs are still weak and full of junk and bacteria. Now if I had the chance still for new lungs but there would be more progressive damage I would jump at the chance for a cure!! It would be the most amazing thing in the world. But I wouldn't just want it for me. There are so many kids with this disease that do not get a chance at life. Medical bills pile up, and there's always more meds to take and more doctors to be scene. It really is never ending. Me?? I had my chance at life, now I want a second chance. I want get back all the years I have spent sick. To get back to me passions in life and do what I have been doing all this years but on a larger scale. Get not only CF awareness out there and help raise money for the foundation which will fund research, but for POTS, MCAD, and food allergies. My time is dedicated to all this. We need a cure!! Not for me but for the generations to follow, for people who fight this day in an day out. For the parents that watch there kids breaks down and get sicker every single day. For our family members that watch us fight for the next day and sometimes the next hour. For the people who we've never met that fight for us in ways we will never even begin to see. THIS is why we need a cure. Not so some wild kid can take life for granted, for the families that just want to see their relative live!! I mean actually live and enjoy life.
Many people close to us know what are fate is, and it's scary to think about it. But I have always told Wonder Woman I would be blunt with this blog because I am no other way. Our reality is we will need new lungs or other organs as well to get a second chance life. 1 in 3 people with CF die waiting for transplant and it's heart wrenching. I would not wish this on anyone. I see how my life affects people. I see how my decision about my health affects people. I use to tell people I am alone in this battle but I am not. People truly worry they will have to live with out me and I will do everything in my power to prevent that. I don't care what I go thru. I will fight for my second chance or just my chance to live. To love, and to follow my passion in life. People want to save me but have NO idea how to even so much as help me. Me personally well you can't, just let me know you love me is all you have to do be there for me. But you can help others, the ones much younger then me or not born yet. You can donate to the organization to help find a cure, or better treatment. You can be a donor. You never know who you can help!!
Do I want a cure?? Yes but I also want the next generation to have a chance at life and to fully live and breathe to their full potential. Also say a prayer for us!!
Love Y'all
~Poppet
No comments:
Post a Comment