#1--I thought that once Brady got Kalydeco, everything would be great and I could stop worrying about CYSTIC FIBROSIS. The reality is that I am tortured by the fact that others who could benefit from Kalydeco can't get it because of the many roadblocks to access. This feeling mixes with the guilt of being one of the first families to benefit and rips my heart to shreds. Overall, I feel extremely disillusioned with the world because people that I care about will get sicker or need a transplant because they don't have the $300K/year to pay for this drug. Or maybe their Dr. just isn't on board with writing the Rx because he isn't educated enough about the potential. It hurts my heart and my brain. This feeling is only amplified as I see how wonderful Kalydeco is working for Brady.
|Enjoying our fall Farmer's Market!|
#3--I have found tremendous JOB SATISFACTION. Let me just reiterate that I am unemployed (convenient, huh?). I don't work for the CF Foundation. I don't work for Vertex. I wondered what the hell I would do after Brady got Kalydeco and I didn't have to dedicate every second of my life to fighting for this medicine. I'm so lucky that my husband has an excellent job that has allowed me to stay home with Brady from birth to present. I've been able to teach Brady so many things in our time together and I've found myself a job as a caretaker/cheerleader/mentor/translator/fundraiser for the CF community. I remember the first few months after Brady's diagnosis as the darkest time of my life. Sharing research information with families makes me so happy because scientists are on the right track and there is GOOD NEWS. It is incredibly empowering and wonderful. I don't have any conflicts of interest. My only concern is helping CF patients and families get what they need.
#4--I thought that once Brady got Kalydeco, life would be calm and serene. Man I am an idiot. I've been so "worked up" since Brady started taking the drug that my insomnia is worse than ever! Since I've been subsiding largely on coffee and champagne for the last several weeks, I'm sure I'm working on an ulcer flare-up also. Watching Brady's transformation has been so thrilling. Every new test result sends me right back over the moon (like his most recent sweat test: 17mmol/L!! I walked around yelling 17?!?! for days). My heart is all wrapped up in all these other CF families and I constantly have YOU/YOUR child's mutations swimming around in my mind. I'm working on my little notebook to take to the NACFC with all the questions I want to ask, and all the specific mutations I want more information on. Basically, I've worked myself into a frenzy. And because I attended the Conference last year, I know exactly how awesome it is going to be! The thought of sitting down to dinner with "CF Celebrities" makes my palms sweat! Not to mention that I have a huge knot in my stomach wondering what new data will be presented because I know how much it means to CF patients and families. I know how much is riding on the results of that research. Will an effective combo be ready to market in 2016? Or will it take longer?
|Is "Brain Pain" a real condition??|
I got a haircut today, bought new luggage, and am trying to figure out what I'm going to wear?! It's crunch time! I seriously hope I don't just drop dead of a heart attack from all the excitement!