This, That, a Video, and #GivingTuesday

I’ve had a blog post in the works for days now, coming back to it periodically, editing, deleting. But for some reason it never seems right. And so it stays a draft.

Thanksgiving approached, and I planned a post about all the millions of things I’m thankful for. But it never made its way out of my head.

So here I am, with not much to write but lots of words on the tip of my tongue.

Since I love lists (who doesn’t?), let’s start there and see where it goes.

The happenings on this side of the internet…

• New job! (I’ve never been one to talk  about work on here, and that will still be the case. But let’s just say I love it, and feel blessed to have found something I like doing with people who make each day an absolute blast.)
• CF things and stuff. Most of what said draft is about. On the sweet side of life with cystic fibrosis, I’ve had the opportunity to speak at various events sharing my CF story, something that continues to be one of the most terrifying and rewarding things I do. (If you’re in Baltimore and need something to do tomorrow night, I’ll be speaking at Baltimore’s 35 Finest. Tickets and more info here.) For those curious, my wonderful husband recorded my speech at An Evening on the Severn:
• A couple weeks ago, one of my favorite restaurants in Baltimore turned 2 – Wit & Wisdom. I was lucky enough to attend their fabulous birthday bash (a big thank you to Renee + the Wit and Four Seasons crew!), which meant eating things like scrapple sliders, oysters, and macarons. I know, rough. If you live in Baltimore and have yet to go there, make a reservation STAT. (And if you’re planning a trip to Charm City, make sure it’s on your “to eat” list.)

  

  me & Renee at #WitTurns2

• Thanksgiving = lots of time spent with family, lots of food, and snow! (Manmade, but still white and fluffy.) Grateful isn’t enough to describe how I feel about this life I’m lucky enough to have. The people are the sweetest part – including you, dear readers (are you still out there?).
• Thursday is the Monument Lighting here in Baltimore – one of my favorite events of the year. The holiday season has arrived!
• Somewhere around this time six years ago I met two of my very best friends. We met when single, renting apartments, and in different jobs. We’re now all married, one of us has a baby, and we’re all homeowners. Girlfriends that go through those kind of life changes are irreplaceable. And we’re celebrating our friendship at Spoons – our favorite brunch spot – this weekend. Ladies, they say a friendship that makes it seven years will last a lifetime – just one year to go before we’re officially stuck with each other.

There’s just a peek to get you guys a bit caught up. I hope you all had a Thanksgiving full of great food and even better company. I promise to be back very soon.

xo,

K.

P.S. Today is #GivingTuesday, a day to raise money and awareness for whatever cause strikes a chord with you. And as you all know, cystic fibrosis is the cause nearest to my heart. As someone living with CF, I can personally attest to the difference the CF Foundation has made in my life. Each and every person who has spread the word, attended an event, and donated (whether it be their time or money) has taken part in the HUGE strides being made to improve the quality of life for CF patients – and to one day find a cure. If you hadn’t planned on giving today – or weren’t sure where to give – check out my fundraising page or head on over to BmoreGivesMore. Every single dollar counts, for whichever cause you choose. If you can’t afford to give this year, passing it on and spreading awareness goes just as far.

As always, THANK YOU from the bottom of my heart for your constant support. It never fails to lift my spirits and put a smile on my face.

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Cystic Fibrosis Awareness Month: Team Brandon

I wasn’t sure what I wanted to write about today. But then I read Bridget’s post. I’ve been a longtime reader – and big fan of hers – for years now. And to stumble across her blog today when I was at a loss for words on my own blog seemed meant to be.

Like I told Bridget, putting faces to this illness is so important. It lets people see just who they’re helping – and what this disease is really like.

I hope Brandon gets the chance to feel healthy again. To play with his kids. To grow old with his wife. To ski or run or travel. To do whatever he wants to do. We all deserve that chance.

So please take a few minutes to watch Brandon and Nycole’s story. There are many ways you can help: share this on Facebook, Twitter, your blog, or send an email to family and friends. And if you can donate anything, that helps too. This blogging community is a powerful thing, and I can’t wait to show Brandon and Nycole that we’re here rooting for them.

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.

My First Vlog!

Hello lovely readers! Hope your day is going swimmingly.

Alright… here goes nothing! Ahem, introducing my first vlog! (It took an embarrassing number of tries to record one that didn’t make me feel like a total fool. So be kind 😉 )

Click here for Steve’s fundraising page and here to ask a question on yesterday’s post. Thanks for watching and supporting and being overall wonderful people! (And keep checking back in during May – Cystic Fibrosis Awareness Month – to learn more about cystic fibrosis.)

 

Dancing to “Teenage Dream”

Today I’ve been busy with freelance projects (woohoo!) and haven’t had time to finish a blog post I started. However, I did take a quick break to watch a couple of our wedding videos and thought I’d share one with you. At Katie’s wedding a couple years ago, the bridesmaids all danced to “Teenage Dream,” quickly making it “our song.” So when it came on during our reception, we all rushed to the dance floor! (Video credit goes to my matron of honor, Katie, and her husband, Ted. Having these videos to look back on is SO FUN!)

Hope your week is going well!

What’s Making Me Happy This Week (2nd Edition)

Since the last couple of posts were on the heavier side, I thought it was time for some fun around these parts! (To see where I got the idea for this post, check out the first “What’s Making Me Happy This Week.”)

Let the fun begin!

1.) Do you love country music? Did you want to be Tammy Taylor from “Friday Night Lights?” Then you should be watching “Nashville.” Since I often enjoy the same things as Jessica from How Sweet It Is, I figured I should give it a shot. Um, SO GLAD I DID. I watched 13 episodes in an embarrassing amount of time and am now eagerly awaiting a new episode. (Speaking of which, WHEN WILL THERE BE A NEW ONE?!) (If the amount of caps used has any correlation with how much I love this show, then I obviously LOVE IT.) Bottom line: Drop what you’re doing (yes, even reading this blog post, it’ll be here when you get back) and WATCH IT. Hulu has all of the episodes available. (This is not an endorsement, although I do love me some Hulu.)

2.) In an attempt to save money and fulfill my current role as stay-at-home wife, I’ve been making dinner a few nights a week. This vegan sweet potato + quinoa chili was perfect for this gross end-of-winter weather we’re having. And it was super easy. I had almost all the ingredients on hand and it took about 30 minutes from start to finish. Plus there were plenty of leftovers. (Sidenote: Mike ate it. For those of you who don’t know him, this is a big deal. My husband can be somewhat picky when it comes to food – some things he dislikes: strawberries, broccoli, ice cream flavors other than vanilla, anything with a “strange” texture, shrimp, any fruit other than bananas + apples, yogurt. The fact that he ate a whole bowl of sweet potatoes, quinoa, and black beans speaks highly of this dish.)

3.) The 20/20 Experience. I think that’s all I need to say. (I didn’t think my Justin Timberlake crush could get any bigger. But it did. It really, really did.)

4.) Rachel Bertsche wrote MWF Seeking BFF with me in mind. Okay, that’s not true, but it seemed like she did. Confession: Making friends has never come easily for me, especially in adulthood. I tend to be shy when I first meet people, and it can take some time for me to warm up. Going to a small university and pledging a sorority helped me form friendships that I will be forever grateful for. And joining a book club post college was one of the best decisions I’ve made since moving to Baltimore. But your 20s bring a lot of changes, and sometimes that means friends come and go. This book made me feel like I’m not the only one who struggles to make those same friendships that came so naturally in college. Not only did Rachel share her experiences with “dating” 52 different women, but she also included research about female friendships that I found very helpful. Definitely pick this up if you’re looking to meet new people but aren’t sure how to go about it.

5.) The last thing that put a smile on my face this week is for my Baltimore readers. I attended my first Stoop Stories at Centerstage on Monday and am now begging Mike to take me to all of them. For those who haven’t been, Stoop Storytellers is hosted by Jessica Henkin + Laura Wexler – two hilariously smart Baltimoreans. At every show, seven people tell a seven-minute story related to a particular theme. (This last one was about the legal system and featured the former Baltimore Police commissioner, an investigative producer at Fox45, and a public defender, to name a few.) The show also includes live music from different local artists. It’s a great way to learn more about Charm City (and it’s super fun, too!).

So tell me, what’s making YOU happy this week?

Bad Days + A Video

Yesterday was hard.

It started great. I was up at 6:30 with a cup of coffee and a slice of banana bread, watching CBS This Morning.

Then a coughing fit started, one that had me leaning over the sink. It wasn’t pretty.

It’s been a long time since I coughed like that.

It’s hard to explain the toll that takes on my body. My chest hurt, my stomach was sore, and my back ached. But mostly I was just exhausted. Completely drained.

A couple hours later I managed to pull myself off the couch and walk to yoga. I knew that even if it was hard, I’d be glad I went.

The rest of the day I struggled to stay present. It’s a lot easier to be positive and hopeful when I’m feeling good. But when I have days like these – when CF is hard to ignore – my mind wanders. Back to the what ifs. To other CF patients. To my biggest fears.

And then I saw this video. And I realized it was just ONE day. It doesn’t define me or my CF or my future. It’s just ONE bad day.

So I took a nap. Made a healthy dinner. Did my meds. Went to bed early. Slept in.

And this morning I woke up feeling much better.

CF may give me some bad days, but it doesn’t have to hold me back.

* * *

One of the things that helps get me through my bad days is my support system. I have an amazing group of friends and family who have my back every day.

Steve Beck (a different Steve than in the video above) is one of them. Aside from being a good friend, he’s a phenomenal runner (seriously, he’s freaky fast). And he’s running the Pittsburgh Half Marathon this May to raise money for the Cystic Fibrosis Foundation. It’s not often I ask for donations on this blog, but I want to help Steve reach – and even EXCEED – his goal. Any amount will help make a difference… and bring us that much closer to a cure.

Thank you.

What’s Making Me Happy This Week

Each Thursday, NPR has a podcast called Pop Culture Happy Hour – a roundtable discussion from various NPR contributors on their theme of choice, all focused on pop culture. At the end of each taping, they have a segment called “What’s Making Me Happy This Week,” and the only rule is that it has to be something that others might be able to enjoy, too.

I thought I’d borrow from them and do my own version. Just a few things that have put a smile on my face the past week and hopefully it might do the same for you!

1.) One of the perks of being home every day is taking advantage of some shows I used to miss. My current favorite is The Ellen Show. I cry about every episode. Ellen is always doing random acts of kindness for viewers and their stories never fail to tug at my heartstrings. But it also makes me laugh. Ellen is funny, and her sense of humor seems to draw out the same in each of her guests. Here’s one of my favorites from this week.

2.) I’ve been listening nonstop to “Bones” by MS MR. It’s been featured in Pretty Little Liars, Grey’s Anatomy, and the trailer for Game of Thrones Season 3. If you need a new tune, I definitely recommend checking it out.

3.) Okay, I’m breaking my own rule with this one. I don’t think the fact that I got tickets to the Legends of the Summer Tour will benefit you in any way, but I can’t not mention it. JUSTIN TIMBERLAKE. IN CONCERT. It’s making my teeny bopper dreams (and let’s be honest, my adult ones, too) come true. I love that man. Have for 13 years. And it’s been number one on my bucket list to see him in concert. (Nope, not ashamed.) Oh, and Jay-Z isn’t bad, either.

4.) When I first heard about House of Cards I thought, how good could a Netflix-produced series be, right? I was wrong, so very wrong. Mike and I have been watching a couple episodes a week since it came out and are very impressed. If you like David Fincher’s style (The Social Network, Fight Club, Seven), or compelling, well-made dramas, give it a shot.

In the words of the fabulous Linda Holmes, and that’s what’s making me happy this week.

Readers, what’s making YOU happy this week?

Some Inspiration for Your Tuesday

I have a LOT to catch you all up on, including a very exciting (and very belated) announcement. But right now, there’s just one thing I want to share with you…

I’ve been in a funk lately, struggling with how having cystic fibrosis affects my daily life, and when I found this video yesterday, it was just the kick in the butt I needed.

It also made me thankful… for the CF Foundation, for the new developments being made, and for YOU – your support, your encouragement, and your generosity. Keep doing what you’re doing, because with your help, we’ll get there. And people with CF won’t have to be in a funk anymore.

Please watch this, and feel free to pass it on!