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.

What does CF "really look like?"

So it's Cystic Fibrosis Awareness Month and that means that Facebook and many other social media outlets are exploding with posts about CF. What it is, what it means, who has it, why we need funding. I personally have zero problem with talking about my cystic fibrosis for the rest of the months, but it is encouraging to see the community come together every year to bring much needed attention to this illness that affects us so deeply. I've noticed, however, a few posts, discussions and dare I say arguments about "what CF really looks like" and that it's not glamorous or pretty. I've seen this recently and on a number of occasions in the past.

Some think that the best way to bring awareness to is to show the graphic photos. Photos that bare witness to our most fragile state. Photos inside the hospital walls because most people will never have the chance to see something that raw. Others, take a different approach. They aren't as comfortable sharing that vulnerable side of their disease and they would rather post a picture where they look healthier, maybe with their make up and hair done or even a fun snapchat filter. Or maybe they don't want to be labeled as "sick" and they'd rather share the "normal", non-CF side of their lives as a way of showing the world that they're just like everyone else.

Well I, being who I am, have a few thoughts.

Ten years later.

Ten years ago today, I was admitted to the hospital. I was 15 years old and prior to that day, I had only been admitted to the hospital three times in my life. For someone with cystic fibrosis, this was actually pretty impressive. Growing up, I knew that I had CF but admittedly, I didn't know what it meant to be "sick."

I did my breathing treatments, took enzymes and vitamins and the occasional round of oral antibiotics. I had doctors appointments every few months. But between the fact that I was still very much a child and naive about my illness, my "doctor Mom" doing everything she could to keep me healthy and what I can only choke up to being "lucky," I hadn't yet experienced the harsh reality that many with cystic fibrosis face. Honestly, as a child, I barely remember even having CF. When I walked into the Pediatric Ward that Monday, I had no idea I was about to hit a breaking point. That Monday was a catalyst in my healthcare journey because for the first time in my life, I began to understand what cystic fibrosis really was. In some ways, I actually consider it to be my "first" admission because the illness I knew before was nothing compared to what I've known since.

I spent 23 days in the hospital that April. During which, I was diagnosed with CF related diabetes and a mycobacterium abscesses lung infection. I was started on insulin therapy and learned to give myself a shot with every meal. I also had a central line permanently placed in my chest, which I used for IV antibiotics, 3-4 times a day, every day, for the next 3.5 years. In a matter of days, everything I knew about my life changed.

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.