7 Days without my Lightning!

Well....that's different.

I just got back from the toughest run of the year, a measly 5.5 miler. The 7 mile Stompede through the hilly wineries was easier than this one. How is that possible? Well here is the answer..7 days without Blue Lightning aka Kalydeco, aka the little blue pill....and the drug that has allowed me breathe and live like I've never done before.

Unsure about the impact of Kalydeco Check out this vid to see just how cool it is...


It took about 5 days of no BL to really notice that I was returning to my old "CF" self. Much more coughing, a lot more thick and sticky mucus, smelly foul tasting shit in my lungs and breathing when running, cycling and in yoga was a lot different.

Of course with me nothing is ever easy. Something always happens when I am planning a big event, always! So this little hiccup during my most intense training ever was just a test. Todays run I was sweating a ton, my head started throbbing after 3 miles and my sweat was waaaaaaay salty, like the good old days. Definitely a very grounding day.

On my walk home from the run I was thinking and then I  realized how lucky I am. Really. To be in the 4% that benefits from this pill is amazing. Feeling not up to par for a week but knowing that when I again start taking this little blue pill I will feel totally different is just crazy. I realize that some of my friends are struggling to get through the day, or are running and exercising while feeling like crap,  and I can take 1 pill (along with my inhaled meds, vest and 40 enzymes) that makes me feel like I can run around the world.

The run today really made me appreciate all of the running and cycling I did over the years while not on Blue Lightning too. It really was tough! And now that I am on it I am not taking any of this for granted. Testing my limits with this 1/2 Iron Man training and making the most out of this new life is what I have to do. Now that I can breathe and live, I feel like I  have to do as much as I can and keep challenging myself. REST is a 4 letter word and it is too easy!

If you're just catching up I ended my clinical trials for Kalydeco on Thursday and there is a little gap between getting the real deal (my first real prescription) from my pharmacy. Because the cost of this drug, it's not so easy as to just phone it in to your local CVS and pick it up later that day. I had to get prior approval from my insurance which took a few days and then we had to make sure someone was home to sign for it. No leaving this precious package on the front porch!

**I did just get an update from my pops...the eagle has landed!! I will be starting back on Blue Lightning today!!

Lots of morning cycling happened this week. Tomorrow is my 4 hour ride + 20 minute run...stay tuned for the after report!

Cheers to Blue Lightning!

Em