Hey Everyone, UPDATED
Cystic Fibrosis is a deadly genetic disease that not only I have, but my sister does as well.
Having this disease means a constant struggle. A stuggle to breath, to take medicine and treatments, struggling to keep up with daily life and "normal" relationships with loved ones. There have been countless birthdays, holidays,family dinners and even date nights I have had to miss because of hospitalizations or just not being able to leave the house. My friends and family have been traumatized hearing me scream in pain, turn blue, calling 911 for me. Most recently, throwing my barely conscious body in the back of the truck and speeding to the hospital as I gasp for air. Cystic Fibrosis is a monster disease that not only effects myself and my body, but the ones that love me also. I don't think I would be standing here today if it was not for their quick thinking and their endless support. For that I can always express my gratitude but I do not think I will ever be able to return the favor. They are my gaurdian angles.
In April of 2017 I got very sick. multiple lung infections and multiple gastric issues. I stopped breatheing a couple times and the doctors told my friends and family they need to say good bye. i think they said that 4 times. But i fought through it, kinda. my 6 weeks on a ventalator in a coma left me malnurished and paralized. thankfully my brain was spared any damage (or so they say). when i woke up i was in so much pain i tried to rip out the trach in my throat. reaching for painful areas on my body that turned out to be surgrical spots. they had to pin me down and explain what happened. from there it was a blur of pain confusion and frustration. from being paralized having panic attacks having everyone else doing the simplest thing for me like roll me over so i can try to be compfortable. then not being ablle to control or even predict when i needed to go to the bathroom so u make the nurses make a new bed While im still in the bed. i could cry my eyes out everytime i think about it. I woke up Tyler so many times at night just bc i was cold or hot and could flip the switch for the fan. I woke him up just bc i was crying having a panic attack and or in pain. and you know what he and I started going out only 6-7 months and he stayed with me every single day. from the day i went in to the day i filnally left. speaking of leaving. from my 3 month hospital stay i still couldnt come home. my parents looked all over phoenix and the east valley for the perfect rehab for me. and they did it. they taught me how to walk talk use my hands. they worked out with me just doing a few squats or stretching my dead muscles and waking them up again.
this has disabled me mentally and physically but im trying to do my best.
Now of course it is true that this is a horrible disease that needs to be cured, but what you don't know is about all the hard working people trying to make that happen. That is what this fundraiser is for, the people at the CF Foundation. Not only does the CFF fund research and new ideas on finding a cure, but they also help families like mine. Families that have a loved one (or two) with CF and have mounting hospital bills and medications to fill. They help us with our Co Pays and even help with negociating with the insurance company when there is a new trial medication and the insurance doesn't want to pay for it. CFF is an organization that does it all, from research to helping people and everything inbetween or behind the scenes that even I don't know about.
So please if you can help I would greatly appreciate it. Help me reach my goal so I can give back to the foundation that has given me and thousands of others everything they have. But I understand times are tough right now. If you cannot donate, spread the word. Share this post, come to the CF walk in April, research CF for yourself so you can spread knowledge with people. There are many ways to help, even one can make an impact.
Thanks for your time!
I hope to see you on April 22!
If you have any questions feel free to reach out to me!