The community I love is falling apart over Five Feet Apart.

The last 48 hours within the CF community have been... exhausting. Absolutely and completely emotionally exhausting.

Many of my friends within the community know what I'm talking about, but for those who don't, I'll try to sum it up quickly... over the weekend, a PR campaign came out regarding the upcoming film, Five Feet Apart, which features two people with cystic fibrosis who meet and fall in love during a hospital admission. Considering that individuals with CF are advised to stay six feet apart to avoid sharing potentially fatal infections with each other, this is a huge challenge. The movie is suppose to tell their story living with disease and how it feels to be kept at a distance from someone you love. Ultimately, the characters decide that in lieu of everything that cystic fibrosis has taken from them, they want to take something back, one foot of distance.. hence, five feet apart.

In an effort to promote the film before its release date is this Friday, March 15, six influencers on Instagram participated in paid advertisements and shared posts in which they said they can relate to the movie/individuals with CF and the distance that keeps us apart because they too experience distance from loved ones. Their brother/grandma/best friends/etc lives far away and they don't get to see them often. There was also a video released by a trendy media outlet that interviewed an active duty military service member and his wife sharing a similar message that they know how it feels because of their experiences with distance while he is deployed overseas.

The ads have since been removed, but you can read the text of them in Gunnar Esiason's blog here.

Understandably, this did not go over well with those living with CF and what I can only describe as a digital riot has engulfed the entire community, as far as social media is concerned. 

"You have diabetes? How? You're not fat."

Well, it took 11 years and five months, but it finally happened. Yesterday, I was getting a manicure and my insulin pump beeped. The technician heard it and politely asked if I needed to respond to it. I said "oh no, it's okay. That was my insulin pump, not my phone." The next words out of her mouth...

"You have diabetes? How? You're not fat."

This, friends, is why it is so important for those with a chronic illness to be their own advocates. There are so, so, SO many stigmas and so much false information (hashtag fake news) out there about what illnesses are, why they happen and what they mean for the person dealing with it. The only way to change that is for those living with it to speak up, and those around them to listen before making assumptions. Diabetes is probably one of the more commonly misunderstood diseases out there.

Saying goodbye to my safe haven.

Last night, I had the incredible honor of dropping off more than 75 toys that The Junior League of Norfolk-Virginia Beach (JLNVB)  had collected for the Pediatric Ward of Naval Medical Center Portsmouth (NMCP). Ten volunteers from the league helped wrapped all of them plus another 75 or so, for the nurses to surprise the children who will unfortunately have to wake up in the hospital on Christmas morning.

After the excitement settled, my friends all headed home but I had to pick up a medicine refill so I went to the pharmacy. Sitting alone, I was looking at the pictures we took and the gravity of the situation hit me like a brick wall. I couldn't help but start crying right there in the middle of the waiting room.

I have been a patient of the CF Clinic at NMCP since I was six years old and was admitted to the that very pediatric ward more than 20 times in the last decade before transitioning to the adult ward. While I never had to spend Christmas in the hospital, some of the absolute worst days of my life have happened in that building.

10 Things Tuesday: Traveling with Cystic Fibrosis

Hello from Roma, Italia!

Last month, I boarded a plane to spend eight days in Rome. This isn't my first time traveling with cystic fibrosis and certainly won't be my last. And while I'm definitely not an expert, I've had my fair share of traveling oops-es over the years. As a result, I have learned a few tips to making your vacation both safe and enjoyable when dealing with a chronic illness.

For someone who has physical limitations or takes 20+ medications a day, the idea of travel can be terrifying. Being away from your routine, the extra walking, how on God's green earth you are going to pack and carry all of your medicine and supplies... It's no small feat, but that doesn't mean you can't still do it! You just need a little extra effort on the front end.

1. Forget crossing your Ts and dotting your Is... The most important letter is P! Plan, prepare and pack ahead of time. Like... way ahead of time. 

The most important aspects of traveling with a chronic illness are to plan ahead and be prepared. Honestly, most of the next nine tips are some variation of this. I'll get into more details as they pertain to certain issues such as carry-ons, accommodations, itineraries and travel buddies, but the very first step is to pack your bag.. and pack it early! I am literally probably the worst packer in the history of the mankind. If you have any doubt, ask my sister Jenny who during one trip, managed to repack my one full size and two carry-on size suitcases into just one full and one carry-on because she's a wizard like that. She will probably say otherwise... but I have gotten slightly better over the years. One thing I did in getting ready for my trip to Rome that significantly reduced my pre-trip anxiety was that I packed every single one of my medications and supplies five days before I boarded the plane, the earliest I ever have! Doing this so early ensured that I could take my time and make sure that I had everything I needed and it fit into my bags. It also gave me several days to mull it over and remember the extra items that I didn't think about the first run through. Far too many times have I packed the night before or even morning of a trip, and 12 hours later when I'm already on my way, remembered something else I needed. This time, I can say with complete confidence that I had every single thing I needed. Looking ahead at my next adventures, I'm going to make it a habit to at least pack these medical essentials well in advance, even if I still have some room for improvement on the whole packing-way-too-many-clothes-at-the-last-minute thing.

Dear Mom, thanks for... well, everything.

Mom,

Not long ago, I sat on my bedroom floor, hysterically crying. Everything was piling up and I honestly had no idea how I would get through the next few days... I was signed up to participate in an online virtual conference for adults with cystic fibrosis, called BreatheCon. I was suppose to go on a practice hike to train for my upcoming Xtreme Hike. And finally, I had my first follow up appointment with the transplant team at Duke University. Throw in a long work week, boy drama and the stress of being the lead planner on a volunteer event happening while I was out of town, I was done. I was past my breaking point. I felt overwhelmed and defeated. I didn't want to do any of it. I didn't want to attend BreatheCon, I didn't want to hike, I didn't want to go to Duke. I only wanted to crawl into bed and cry.

 
Yet, somehow, less than an hour later, I was logged into BreatheCon listening to one of the most inspiring panel discussions I've ever heard. 15 hours after that, I hiked 8 miles and was standing on top of a mountain. Another 48 hours later, I was walking out of my transplant appointment, feeling genuinely optimistic and motivated to keep pushing through the adversity that is living with cystic fibrosis.

It didn't just happen "somehow" though. It all happened because of you. Everything that's happened in the last 25 years, everything I've been able to do, is because of you.

I often get praised for being strong, resilient and accomplished despite my cystic fibrosis, but I didn't become any of those things by chance. I had the most incredible role model to show me how. Last weekend was a challenge and I got through it, but not by myself. I got through it, because of you.

So thank you, Mom. Thank you for everything. 

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?"