The one where I got covid...

It’s hard to know where to even start with this update. The last few weeks have been unlike anything I’ve experienced in a very long time and pretty much everything I’ve been terrified of happening since March 2020. I do want to start by saying I am okay. I wouldn’t say I have fully recovered, but I am doing much better than I was and have complete confidence that I’ll make it to 100%, sooner rather than later, and without any long-term consequences. That said, four weeks ago, I got covid. And boy was it an experience. To be honest, and please pardon my language, but experience doesn't even do it justice. Absolute f*cking chaos is a much more accurate term. 

Before I dive into the last few weeks, I feel like I need to take a moment to talk about how I got to where I am today and why I'm even writing this blog after such a long hiatus. For more than a decade, I shared my story and my life with chronic illness through a computer screen, with the hopes of both helping others, and finding much needed support through my struggles. Growing up with a chronic illness is hard. It’s isolating, for so many reasons. With CF, that isolation is amplified by the fact that we can’t have in-person support groups, because of the risk of sharing superbugs and making each other sicker. Instead, people in the cystic fibrosis community have turned to social media, eagerly and sometimes desperately seeking a connection with people who shared our burdens, seeking something that our “real life” family and friends simply couldn’t provide. Since high school, I’ve found solace and strength in being vulnerable with complete strangers. I’ve shared my fears and frustrations, my dreams and deepest desires. I took my passion for writing and used it connect with people all around the world, forging friendships that to this day, are some of the best I have. As a teenager, my reasons were more selfish than not. I’m a talker and my way of dealing with things is to just let it all out. Being able to vent to Facebook was a coping mechanism to try and manage all the stress that comes with this life and illness. I was in pain and angry. I was fatally ill and terrified. I needed to know it was going to be okay. I needed support and just encouragement through my daily fight against this disease. 

As I got older though, I started to see the bigger picture. I started to see how deeply chronic illness affects people, how little the general public understands what it means to be chronically ill, and how broken our healthcare system is at times. I quickly realized how me being willing to talk about my experience could help others. I could help people feel like they weren’t alone while they were fighting their own battles — people who were feeling like I had just a few years earlier — and I could also help those who haven’t experienced adversity with their own health to understand a little better what their loved ones or peers who had might be feeling. By the time I was in college, I had a developed a passion for advocacy and doing everything I could to leave the chronic illness community better than it was when I first stepped into it.

Fast forward to 2020 and I found myself in a unique position. 

Trikafta: Six Months Later

Six months ago today, I stood in my office (who even remembers what that feels like these days? LOL), anxious, eager and cautiously optimistic to find out what this box and the little pills inside would do for me. This medication was an answered prayer for so many. It was a miracle drug that many had waited for their entire lives. Personally, I was one of the lucky ones because this was not the first miracle drug I was able to take. The truth is my first miracle happened almost five years ago when the FDA approved Orkambi in July 2015.

Prior to Orkambi, I was admitted to the hospital on average 4-5 per year. Since starting Orkambi in August 2015, I’ve been hospitalized three times total. Three times. In five years. To me, this was more than enough. I didn’t care that my lung function hadn’t gone up, I didn’t care that I didn’t gain weight. I just relished in the fact that I finally had the chance to live something that more closely resembled a “normal life”. I cherished that I didn’t constantly feel sick and that I didn’t repeatedly have to put my life on hold to go spend two weeks in the hospital every couple months. What Orkambi did for me was life changing and I couldn’t imagine how it could get any better. Man was I wrong...

Last November, I started Trikafta, the newest and best CFTR modulator developed by Vertex Pharmaceuticals to treat the underlying cause of cystic fibrosis, and once again, my life changed in ways I couldn’t even fathom. 

Quarantine Thoughts from A (High Risk/Chronically Ill) Woman Living Alone

Today started out like most other days. I woke up, started a pot of coffee, took my two dogs, Teddy and Benji, out for a walk and then made the very long 8ft commute from my living room to my guest bedroom to start (tele)working. A few Zoom calls later, a familiar bing came from the news app on my iPhone. I needed a fresh cup of coffee anyway, so as I stood up to walk to the kitchen, I picked up the phone to check, wondering what depressing and/or highly politically tinged headline would show up on my screen. To my surprise, the words that lit up had nothing to do with Trump, stimulus payments, or the CDC. The headline didn't remind me of the incredible sacrifices our medical professionals are making right now or the growing case numbers/death rates. 

Instead, a banner that read "The Washington Post: A Woman Living Alone" stopped me in my tracks.

I was intrigued and clicked to read more. The text that followed was a column that featured seven women living alone during the coronavirus pandemic. Being a single, 28 year old woman, currently living alone during the coronavirus pandemic, I found myself immersed in the stories of women experiencing many of the same emotions I've battled with over the last month and a half.

The column started by explaining that the last time the U.S. faced something like coronavirus — the 1918 flu pandemic — the majority of women were married by age 21 and went straight from living with their parents, to with their husbands. A few spent time in boardinghouses with other women, but they never lived alone. Today, 23.5 million American women live alone. Most, however, are far from lonely. Women without partners or roommates "have triumphed by developing strong social networks,” and they "invest in their hobbies and maintain friendships; building connections with other people more effectively than men." A fact I wholeheartedly agreed with as I reflected on my own life.

Post COVID-19, the networks these women have built for themselves appear very different. The author compares it to a cold water bath that "removes almost all the advantages of living alone and amplifies all the hard parts." As I read the stories of these women, I found many similarities between my own life and theirs.

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.