CF Awareness Month: Giving a Face to the Disease

chillin’ with dad

I originally planned to post a “CF cheat sheet” to kick off CF Awareness Month, but then my dad sent me this picture.

It arrived in his mailbox yesterday, sent by an old family friend completely out of the blue.

The fact that it showed up the day before the start of CF Awareness Month was uncanny: The day after this picture was taken I started a 15-year journey to what would ultimately be a diagnosis of CF.

It was Memorial Day weekend, 1985, and I was just eight months old. I’d been struggling to put on weight (despite my apparent chunkiness) and my parents were desperately trying to figure out what was wrong. The next day they took me to my pediatrician, who immediately admitted me to the hospital after discovering my veins had collapsed. One of the many tests they ran was for cystic fibrosis*… and it came back negative. During my 10-day stay – what I can only imagine was a harrowing experience for my parents – no definitive diagnosis was made and I was sent home.

Fifteen years later – after even more bloodwork and doctor’s appointments and puzzling health issues – we learned that despite the negative test so many years ago, I did, in fact, have cystic fibrosis.

And what a journey it’s been.

The hardest part continues to be managing the disease as an adult. It takes its toll, both physically and emotionally.

But I am so very lucky. This year Mike and I will celebrate our second wedding anniversary, I have a job I love, and I’ll turn 30 (!!!) in September.

I am beyond grateful for the advancements in CF treatment that have allowed me to reach these milestones so many patients before me didn’t get to do. But there’s still work to be done.

My greatest hope is that one day there will be no CF diagnosis to give. That no one – parents, children, adults – will have to wonder what a future with CF looks like.

I have hopes and dreams and goals, just like anyone else… and while I’m doing all I can to make those happen, the what ifs are always there.

What if I never have children? What if I do but I don’t live to see them grow up? What if I don’t have the chance to finish out my career? What if I don’t get to grow old with my husband?

Over the past few years there’s been astounding progress in treatments for cystic fibrosis. In 1984 ­- the year I was born ­the life expectancy was just 25. That number has now risen to 41.

And there are all sorts of exciting developments on the horizon that will not only improve the quality of life for CF patients, but continue to extend it.

I truly believe the most crucial part to finding a cure for CF is understanding. While CF is being talked about more and more, I’m still constantly surprised by how little is known about what it is and who it affects.

That’s exactly why I share my story.

Putting faces on this disease – showing that it’s daughters and sons, mothers and fathers, wives and husbands – humanizes it. People with CF are leading lives just like everyone else, and we want to continue to live them.

Over the next month I’ll be sharing more of my experiences and struggles with CF, as well as all the ways you can help.

This little ol’ blog has been a wonderfully therapeutic space for me over the years (even though it often collects dust) and I will never be able to express my gratitude to all of you who continue to read my words and support the cause.

Want to help right now? Start using the #CFAwarenessMonth! And make sure you’re following the CF Foundation on Twitter and Facebook. (You can even donate your Facebook cover photo!)

Pssst, want to see what I’m up to during CF Awareness Month (and all the other months of the year)? Follow me on Twitter and Instagram.

*To learn more about cystic fibrosis, visit the CF Foundation’s website or my “About CF” page.

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Cystic Fibrosis Awareness Month: One Day At a Time

As Cystic Fibrosis Awareness Month comes to a close, I want to thank you all. For reading, sharing, commenting, supporting, and being the most wonderful community I could ask for.

Obviously raising awareness is important the other 11 months of the year, too, so I’ll be continuing to do what I can in this little space to share my story – and I encourage you to do the same.

Tomorrow is my tri-monthly Hopkins appointment, and once again my nerves are getting the best of me. I’ve been thinking a lot about CF lately, more than usual. Partly because I’ve been more active in the community during CF Awareness Month than ever before. But I also think it’s because I have more time on my hands.

I left my job back in November for many reasons, one of them being to focus on my health. And while it’s been great, it means I’ve had more time to think about this disease. The future, the fears, the daily hardships, the questions, the community and all those affected.

Maybe that’s why I’ve been more quiet on the blog these past couple of weeks.

On May 1 I came ready to embrace this month of awareness and truly participate. I’m proud of what I accomplished, but after the first couple weeks I found myself consumed by it. I dove headfirst into a community I’d held back from for so long, largely out of fear – both of the known and unknown.

All of this to say I’m trying to find a balance. The CF community is made up of some of the most supportive, beautiful, and compassionate souls – people I desperately need in my life. It’s also full of heartache.

It’s all too easy to get dragged down by the sadness that surrounds having cystic fibrosis. I find that especially true as I approach each appointment. But I know indulging in my fears doesn’t help. So I struggle to pull myself out, to replace the negative thoughts with hopeful ones. And, as always, I do my best with each day I’m blessed to wake up to. Reminding myself to take one step at a time, even if they’re only baby steps.

What do YOU do when you get caught up in your worries and fears?

Q&A: Part II (Video)

It’s day 9 of Cystic Fibrosis Awareness Month and time for me to share my answers to the rest of your questions (here’s Part I if you missed it)! After the video, I’ve provided a writeup of both the questions and answers, along with any links I promised I’d share, so you can refer to that if you’re unable to watch.

There’s no point in me rambling on, so here you go!

(Again, these answers are from my own personal experience with CF, and the information I’ve obtained on my journey living with this disease. Please don’t take any of what I say as advice or the only answer. Us CFers each have our own story and our own routine as prescribed by our care team. Thanks!)

Important links:

• Q&A: Part I
• Great Strides
• CF Foundation
• Friday’s vlog
• Local chapters

Katie asked: When are the times, or are there times, when you forget you have CF?

This is a tough one. I’m not sure I ever totally forget I have CF, but there are plenty of times when I don’t think about it. Like I talked about in part one, it’s important to remember that there’s more to me than having CF. Taking time to enjoy the rewarding parts of my life – like my husband, friends, family, the city I live in, hobbies – helps me not to dwell in the difficulties of having CF.

Kara asked: I love the Great Strides walks we do to raise awareness, just curious if there are any additional events or other ways we can get involved locally?

For those of you unfamiliar with Great Strides, it’s a national walk event sponsored by the CF Foundation – and it’s the biggest fundraising event they have. Last year nearly $40 million dollars was raised to help fund cystic fibrosis research (I talked about why fundraising for CF is so important in Friday’s vlog).

For other ways to get involved, the best advice I have is to check with your local CFF chapter. (Just check out the link above to help you find the chapter closest to you.)

Sarah asked: Do you feel like CF limits you from doing things on a daily basis? Not necessarily big life changing things, just little daily social events or activities?

Having my life be as normal as possible is incredibly important to me. That’s just one of the reasons I do my best to take good care of myself – that means no skimping on my daily treatments, working out as often as I can, getting enough sleep, etc. But there are days where CF gets in the way. I’ve had plenty mornings that I wake up coughing my guts out and have to forgo a workout. Time with friends that has to be cut short because I need to get home to do my treatments. Or nights with little sleep because of more coughing. I feel very lucky that right now I’m healthy enough to lead a full and productive life.

Please feel free to leave any other questions you may have – new ones or anything that relates to this week’s Q&A – in the comments below.

Q&A: Part I

I received some fantastic questions from last Wednesday’s post. A BIG thank you to all who reached out. Cystic Fibrosis Awareness Month is about learning, educating, and helping people understand – and your questions are making it possible to do just that! (If you want to share this post, or anything you’ve learned, on social media, please use #CFAwarenessMonth.)

Since there were so many, I’ll answer your questions in two parts, half of them today and the rest in a vlog tomorrow. Be sure to check back!

Let’s dive right in…

(As always, these answers are from my own personal experience with CF, and the information I’ve obtained on my journey living with this disease. Please don’t take any of what I say as advice or the only answer. Us CFers each have our own story and our own routine as prescribed by our care team. Thanks!)

Kristin asked: Is there pain with all the mucus in your chest? Does the VEST make the pain worse? 

For those who aren’t familiar, the VEST is a form of airway clearance. Many CF patients are advised to do airway clearance on a daily basis to help break up the thick, sticky mucus from our lungs. (Some of the other forms are the Acapella, Flutter, or chest PT). I would describe any pain I feel in my chest as more of a tightness, often accompanied by lots of coughing. I find that the best way to get some relief is to do one of three things (or a combination): take a couple puffs from my inhaler, do airway clearance, or go for a walk/run. (And if it persists I call my doctor.) The VEST doesn’t necessarily make the tightness worse, although I might cough more which can be draining – BUT I know that it will ultimately make me feel better.

For the past few years, I’ve been almost exclusively using my Acapella to perform airway clearance because the VEST I have is the one I received when I was first diagnosed – 12 years ago. It’s HUGE, and very difficult for me to move on my own. Luckily, I was able to receive a new one just last week. I’m excited to get back to using the VEST and see if I notice any improvement. Below is a picture of the old VEST (left) and the new one (right). What a difference!

(May is also Lupus Awareness Month, which Kristin writes about on her blog, Working Lupie. Head on over to learn more about living with lupus.)

Mandi asked: Are you able to have children when you have CF? Are there precautions you need to take in order to have a baby?

Great question, Mandi! And one I get a LOT. 97% of men with CF are infertile but not sterile, so they can have children with medical assistance. For women it varies – some may have difficulties with fertility due to thickened cervical mucus. However, deciding whether or not to have children is a very personal decision – and something I’ve wanted to talk about for a long time. There are many things to take into consideration, both before getting pregnant and after. It’s been an evolving (and complicated) conversation for me and Mike over the past few years, and I think I’ll be ready to write about it here soon!

Kate asked: Are there exercise or other natural things you can do to lessen the symptoms of CF?

Exercise is important for everyone, but especially for people with cystic fibrosis. According to the Cystic Fibrosis Foundation’s website, “Regular exercise can improve your ability to get mucus out of your airways and out of your body.” I’ve tried to get into running in the past (I ran my first – and so far, only – 5k a couple years ago) but haven’t been bitten by the running bug yet. But I’m not giving up! After the craziness of this past year, exercise took a backseat and I’m determined to make it a priority now that I have more time. In fact, I’m signing up for the Baltimore Women’s Classic 5k at the end of June and hope to run in next year’s Sole of the City 10k. (Any training tips, songs that pump you up, etc. are welcome!)

I also get acupuncture every other week, which I’ve found greatly helps with my stress level and boosts my immune system, helping me avoid pesky colds that can be detrimental to those with CF.

Katie asked: How do you draw a balance between being a champion for your disease and trying not to be defined by your disease?

This question resonates with me because it’s something I continue to struggle with. I talk a lot on here about the fine line between living with CF and living into it. The more involved I get in advocacy, the more I know it’s what I was put on this earth to do. But when I spend so much time talking about CF, it can be easy to ignore the other parts of me. If I’m ever feeling CF overload, I let myself take a step back. That might mean reading a book, writing about things not related to CF, going out to dinner with my husband, or getting together with a good friend to talk about life.

Yesterday, a member of the CF community that I’ve come to really admire, put it perfectly: “CF awareness is about spreading our message to help make the rest of our lives (the parts that have nothing to do with CF) possible. Spend a few minutes whenever you can thinking about the you who is NOT a CF patient – who is instead a person, who just so happens to have cystic fibrosis. And make sure that you, and all those around you, are “aware” of that person as well.”

Check back tomorrow for a vlog with the answers to the rest of your questions. And if you have any more, or want me to elaborate on things I’ve said here today, please let me know in the comments!

Day 6 of Cystic Fibrosis Awareness Month: A Slight Delay

Thank you for all your sweet comments on my vlog! Since I didn’t totally blow it, a new one is in the works. Stay tuned!

In the video, I mentioned I would answer your questions from Wednesday’s post today. Unfortunately, I ended up having a very minor medical procedure today (non-CF related), which threw off my day a bit. I’m a little sore and plan on recovering on the couch, BUT I’ll definitely be back tomorrow to continue celebrating Cystic Fibrosis Awareness Month and talk everything cystic fibrosis.

In the meantime, fill me in on what you did this weekend in the comments below!

It’s May… And Cystic Fibrosis Awareness Month!

Before I go on, I want to thank all of you for the response to my last post.  Once again it showed me just why I continue to share my story – and that I also have a truly wonderful group of readers. You guys totally rock.

As you can tell from the title of this post, today is the first day of Cystic Fibrosis Awareness Month. My mission ever since I became involved with the foundation has been to raise awareness. Over the years it’s become apparent to me just how little people know about this disease – and I want to change that. Especially because I believe that people are more likely to support a cause they understand.

Yesterday on Facebook I asked my friends to post any and all questions they might have about CF – both my journey with it and the disease in general – and I got great questions (some I’ll expand on here throughout the month). I thought the perfect way to kick off Cystic Fibrosis Awareness Month would be to offer the same thing here: What questions do you have about CF? What would you like me to talk about so you better understand the disease? (This is a judgement-free zone. As they say, there’s no such thing as a dumb question.)

So let’s get started! Leave your question in the comments and I’ll answer them in a post on Monday.