Sunday, September 30, 2012

Brain Pain

I will never ever forget the fear that comes along with dealing with CF, but it has been over 7 months since Brady has been on Kalydeco now and I can feel myself adapting to a new normal.  The fear is losing its grip and I've even found myself away from home WITHOUT hand sanitizer a time or two (gasp!).  Before February 10th, when Brady took his first dose, I simply could not conceptualize what my post-Kalydeco world would look or feel like.  Getting him that medicine was my singular focus and goal.  Well, he got his medicine and time has marched on.  Since I'm one of those people that like to have control of everything, this "after" time has been really refreshing for me.  For once in my life, I feel like instead of making lists and plans...I am just enjoying the ride.  There have been a few surprises for me along the way--some fantastic, others not so great. 

#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. 

#2--I thought that once Brady got Kalydeco, I could stop worrying about him all the time and everything would be just peachy.  What I've found instead, is that every parent worries about their children all the time no matter what.  Now my worry has shifted to what some might consider more "normal" parent concerns.  I spend a lot more time worried about Brady getting kidnapped (and hoping the kidnapper will at least remember to take the Kalydeco!), or hit by a car when he is playing outside.  I worry about him picking the wrong person to date or experimenting with drugs...With CF on the sidelines, my mind has been more free to just wander.  The realization I've come to is that there is ALWAYS going to be something to worry about.  I can't control the world (as much as I want to!).  All I can do is love my family and friends every day and cherish the health and happiness that we have in this moment. 
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!


  1. [1/2]
    Be careful... while being a control freak and the temptation to keep your kid in a bubble might be great and physically healthy, it's emotionally and psychologically harmful.

    Your kid is going to outcast himself thinking and acting like he's a special snowflake if you drill into him things like having to use a hand sanitizer while other kids don't because he, has CF, not sharing a drink while other kids can because he, has CF, staying inside for whatever preventive reason while other kids would go outside because he, has CF, etc.
    Those things really don't matter or make a difference. All the active prevention is not worth the mental damage it does.

    My mom was like that. Though she didn't believe it, the psychologist was right when she said that she was seeing the disease before seeing me as a human being and her daughter. So that's how I learned to define myself growing up ; as Cystic Fibrosis on 2 legs.

    She was overly paranoid and made me feel overly different because she saw me as overly different. She would never miss the chance to drill into me the dangers of having CF in the wild world and how I couldn't do various things that other kids could, because they would get me sick or hurt me. She made me feel and believe that I was so fragile. Of course it means I kept myself out of harm's (normal kind and CF kind of harm) way, my mom had drilled the fear of getting sick or hurt so well into me, but it had a perverse effect. When people didn't treat me like I was special or give me special consideration when I thought they should (which was most of the time), it felt wrong (since I felt that I was DESERVING special treatment) and threatening, so I kept telling people or reminding them of how they had to be specially careful with me or how I couldn't do such or such thing because I had CF. I did it with kids too, which has caused them to outcast me. I can't blame them. Dealing with another kid's disease and what they can't do as a consequence is complicated for a kid, especially when that kid doesn't look sick at all, so they just didn't meddle with me, unconsciously I guess. I think that how I felt and acted like I was so fragile and different, always having to keep my safety in mind, has put a huge barrier in relating to other kids. Both me toward them and them toward me.

  2. [2/2]
    It took me living with my dad and away from my mom to realize that in the end, I wasn't that different from other kids. That I wasn't that special. That I could actually do things my mom told me I couldn't do because I had CF. For example, my mom had raised me not share food or drinks with other people "because of bacteria". I didn't even know how they could harm me, I just knew they were bad and icky for kids with CF. Well, one day, instead of automatically responding "I can't, bacteria, CF" to someone who wanted to share a drink with me, I paused and thought "What the hell." and I shared drinks with that person and guess what? Nothing happened. For once, I felt normal and it felt damn good. Really, something as simple as sharing drinking from the same glass as someone else felt incredibly good. I didn't have to put a barrier between a friend and me because of the damn CF and I felt normal. For the first time in my life, too, I felt stronger than I thought I was. Slowly, I discovered that I could do things I was afraid of doing before because my mom had drilled so hard into me that I was so fragile, when I really wasn't. I finally felt like I could trust my judgement to keep myself safe, instead of assuming that I didn't know what was dangerous to me because I might be more fragile than I thought. I haven't been totally healed from my mom's paranoid brainwashing until much later though. My dad had offered me to take Karate lessons, but I refused because I was afraid it would be too dangerous for me (being very fragile and all) and that I would get hurt. I wish I had taken those classes and I wish my dad had seen through my fear and comforted me that I wasn't that fragile.
    We really aren't that fragile. We are actually quite strong. A huge part of it is a matter of will.

    Long story short : Let not the disease define your kid's identity in any way and let not the disease make you want to prevent your kid from doing things other kids do on preventive grounds. There is no need to build your kid as an self-outcast and to undermine his self-confidence for such trivial things.

  3. It had made me a whiny crybaby too. So many heartbreaks and feelings of injustice were had when people didn't treat me the way my mom had taught me people should treat me because of my CF. Sure, ideally it would be great if people were extra nice to us and made things a bit easier for us since we already have to bear with a lot of things, but the reality is that they don't. So it's better not to be raised falsely believing that they should do.