Orkambi isn't the top of the mountain.

Today was my first practice hike to prepare for my Xtreme hike in September. Today also just happens to be two years since I took my first dose of Orkambi, a medication that for the first time in my life, actually treated the underlying cause of my cystic fibrosis, rather than just tried to counteract the symptoms.

Celebrating two years of this life-changing medication
with a casual stroll through the woods

When I got up this morning, I was full of hope and excitement. I had it all planned. I was going to hike up that mountain and when I got to the top of the lookout and stopped for lunch, I would take my anniversary dose of Orkambi and soak up a moment that two years ago, I never dreamed I would be having. I even told one of my best friends that I might do a Facebook live and share the excitement with everyone on here. I've had an amazing two years thanks to Orkambi and had so much support through it all, it only feels right to share this milestone too.

Yeah, so here's the thing about having a chronic illness.... It doesn't give a damn about what you have planned.

Because "not doing something" is not an option.

If you’re reading this, you probably know that when I was 3 months old, I was diagnosed with cystic fibrosis (and if not… well, now you do!). CF a life-threatening, genetic disease that primarily affects the lungs and digestive system of over 35,000 children and adults in America. CF is caused by a defective protein inside the cell, which prohibits salt from entering and exiting at a normal rate. This salt imbalance causes the body to produce abnormally thick, sticky mucus that clogs the airways of the lung and leads to life-threatening infections and irreversible lung damage. In addition, the thick mucus obstructs the pancreas from distributing digestive enzymes that allow the body to properly absorb food. Without these enzymes, most individuals with CF are incapable of digesting necessary nutrients from their meals. Cystic fibrosis can also cause a number of secondary conditions such as diabetes, liver disease, infertility, osteoporosis and more.

There is no cure for cystic fibrosis. When I was born, the life expectancy was just 20 years old. While it has since been raised to around 40, it is still a debilitating disease that significantly reduces quality of life and ultimately, is fatal for all patients. For the last 25 years, I have fought a daily battle against cystic fibrosis. I take over 20 medications a day and spend hours doing inhaled treatments and respiratory therapy to try and maintain my lung function. This spring, I began the process of getting evaluated for a double lung transplant, a last resort option for when my lungs are no longer capable of providing me the oxygen I need to survive.

During one of my transplant appointments in May, a psychologist asked me "What do you look forward to being able to do for the first time or do again?"

I still believe the best is yet to come.... 2016 Great Strides Ambassador

And after all that we've been through

And after all we left in pieces 

I still believe our lives have just begun 

Cause now the past can be outrun

And I know you are the reason 

I still believe the best is yet to come

Has anyone ever told you "the best is yet to come"? Did you believe them? What was going on in your life when they said it?  I've always liked that phrase. I'm a fan of being optimistic and those words embodies positivity in every way. It says "even though things are great right now, they're still going to get better." The lyrics above are from a song by the band RED.

If I had to pick one song to describe the year 2015, it would be that one.

2015 was awesome. It seriously was. You can read about the first half of the year HERE. But to sum it up... I had the most amazing last semester including an internship, a executive board position in my sorority and a director position with ODU's Student Government Association.  I graduated with college with honors. I got a paid internship within a week in my field of study. I got the most adorable kitten in the world. And last, but certainly not least, I was able to start taking Orkambi, the first ever FDA approved medication to treat the underlying cause of cystic fibrosis for nearly 20,000 children and adults in America.

I wrote a blog about Orkambi when I first started treatment (read that one HERE), but per usual, I haven't written much since. Tomorrow will be six months since my first dose. People have asked how it's going and I have to be admit, I hesitant how I should answer. Don't get me wrong, I have definitely had positive results from this medication.... but I'm not going to lie and say that it's been some miracle cure-all.

Happy Spring!

Hello blog world,

So first things first, I really do suck at blogging. I have a New Years' Resolution post that I starting writing almost three months ago still saved as a draft... pretty bad, I know. But my mom has been bugging, I mean.. sweetly encouraging me to get back into it (mostly because she keeps telling her grad school classmates about my blog, and then remembers I don't write on it... ha), so I told her I would give it a shot. Fortunately for her, I have a great topic to start things off! 

Every year, the Cystic Fibrosis Foundation host a national fundraiser called Great Strides. Since starting as an intern with them in 2011, I have been active with fundraising as well as working at the walk. Below is my fundraising letter for this year, which coincidentally, also functions as school project.