My 30th Birthday Wish… For 30 More

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As most of you know, at 16 I was diagnosed with cystic fibrosis, a life-threatening genetic disease that affects the lungs and digestive system. Even 13 years later I’m still a long way from fully dealing with what it means to have this disease and the implications it has on my future.

Right now, my life looks like many other 29 year olds’. I have a wonderful husband, fabulous family and friends, and a job that I love. But unlike most people my age, I have to do time-consuming daily treatments, spend countless hours at the hospital, and worry about what my future looks like.

When I was born in 1984, the life expectancy of someone with CF was just 25 – on September 26th I’ll turn 30! And I can’t wait to celebrate the many things this wonderful life has allowed me to do. 

But I’m not finished yet. 30 years isn’t enough.

So this year, my birthday wish is for 30 more.

For 30 more years of…

dates with my husband…
books to devour…
successes in my career…
vacations to places near and far…
holidays with my family…
meals to enjoy…
drinks with my girlfriends…

For more life. Things big and small. For ALL people with CF.

I truly believe that with support from people like you, we can find a cure so that everyone with cystic fibrosis can live a long and full life.

Here’s where I need your help. I want to kick off the next 30 years in the best way I know how: by raising as much money as I can for the Cystic Fibrosis Foundation and their life-saving research. To support this effort, I’ve created a campaign on Fundly that I’m calling For 30 More. While I’ve never done anything like this before — admittedly, I have a hard time asking for people’s help — I have a BIG goal in mind: $15,000. 

Your donation to support For 30 More would mean the world to me, and no amount is too small. Even if it’s just giving up your morning coffee this week – every bit counts in making a difference for those of us living with CF.

I’ll also be hosting some giveaways for those who help spread the word via Twitter and Instagram using #for30more – so stay tuned! (Make sure to check back because each week’s giveaway items will be posted here.)

There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, husbands, wives, friends and co-workers who struggle every day just to breathe.

Advances continue to be made in finding a cure, but your help is needed now – more than ever – to help keep up the momentumThank you from the bottom of my heart for joining me in this fight!

P.S. Make sure to check out Renee’s blog tomorrow for details on the first giveaway!

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Seeking a Permanent [CF] Vacation

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Every now and then I get in a funk. It happens. A big bowl of ice cream, maybe a glass of wine (who’s kidding, ALWAYS wine), and mind-numbing TV (Real Housewives of Anything, amiright?) and I’m back to my non-funky self.

But a couple weeks ago a funk settled in that I just couldn’t shake. I tried all the normal fixes: mint chocolate chip ice cream, lazing around on the couch, a couple few glasses of Cupcake Pinot Grigio. Heck, I even watched numerous episodes of Keeping Up with the Kardashians.

Still, the funk lingered.

I had plenty of moments where it seemed to have disappeared… only for it to show up a few hours later.

Here’s the thing: there is no vacation from CF.

Feeling drained? Skip your workout. Need a mental health day? Take a day off from work. Feel like grabbing lunch with a friend instead of cleaning? Do it. Want to forget making dinner and go out with your husband? I don’t blame you.

Want CF to leave you alone for a couple days? Sorry, kid. No can do.

That takes its toll. Physically. Mentally. Emotionally.

Especially emotionally.

There were days these past two weeks where all I could do was come home and cry. As if trying to keep it together for eight hours at work was all I had in me. Thankfully, I have a super understanding husband who knows that letting me cry (and running to the store for ice cream) is exactly what I need.

But still, it was frustrating. Not being able to get myself out of that hole made me feel a little nuts. I just wanted to know WHY I was feeling that way. And I wanted to get back to feeling like myself. Not this mopey, lazy, sit-on-the-couch-and-do-nothing, sad sack version.

Maybe this is all a lesson in not always needing a reason. I have a life-threatening illness and sometimes that, THAT is enough to warrant a two-week funk.

As much as this funk has finally lifted, I still don’t feel quite okay. I think part of it is that I’m more involved in the CF community than I’ve ever been. Don’t get me wrong, I love it. It’s a kind of support and understanding that is irreplaceable. But damn is it hard. To hear of other CFers struggling, being listed for transplant, not making it. This disease is not for the faint of heart, and sometimes I wonder if I’m really cut out for what the future holds.

Maybe it’s naive or weak or… I don’t know. But I can’t go there. I’m afraid that if I think too much about what could happen that I’ll never be able to escape the inevitable terror that would set in.

So instead I turn to ice cream and wine and tears. And when that doesn’t work I write. I talk to my husband. I go to yoga and acupuncture. And I hope. I hope that advancements will continue to be made. That fewer people will die waiting for lung transplants. That a cure will be found. And that all of us CFers will one day be able to take a permanent vacation from CF.

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Smiles + Wishes

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Fridays are celebrated with donuts.

I’ve been missing this space lately. And, per usual, I feel like I have lots to say but am without the right words.

The past few weeks have been tough so I’m embracing a “thankful-for-the-small-things” mindset and am soaking up every little moment that puts a smile on my face. I’m sharing some of these things in hopes they bring you some joy, too.

Almost peed myself getting to meet this author. She was hysterical, she signed books + took pics, AND she brought brownies. #winning (Shout-out to Enoch Pratt Free Library for her appearance!)

Enjoying this book more than I thought I would. Even though I didn’t finish in time for my book club meeting (tsk tsk!), I’m determined to reach its end. If you’ve tackled these 700+ pages I’d love to know your thoughts (sans spoilers, of course)!

Has anyone else seen this show? I’m OBSESSED. I might need to seek help. I just want to go live with Joanna and Chip on their farm and play with the baby goats. (And I’d love it if Joanna would makeover my house. Duh.)

Saw this movie. Turned into one big puddle. (Obviously.)

On repeat. Can’t stop, won’t stop. This too. And this.

I have been buying bag after bag of these. It’s embarrassing really. Except that I enjoy them too much to stop. I mean, I could be eating worse things, right?

Reading + discussing this and this. Thoughts? (I bought this, which came highly recommended by my sister, because we both have much to say on this topic. I think it’d be a great book club pick.)

Always loving this girl’s blog. I like to think we’d be friends if we ever met in real life.

Drooling over this (in pink), this, and this. I can’t seem to stop ogling statement necklaces. IMHO, a girl can never have too many.

There’s one last thing making me smile: In just about three months I turn 30. When I was born, the life expectancy of someone with cystic fibrosis was 25. There aren’t enough words to express how THRILLED I am to be here, on this planet, living the wonderful life I feel beyond thankful to be living and I plan to celebrate the heck out of this birthday. (Plus, I have a big birthday wish in the works that I’d love ALL of YOU to help me with. Stay tuned!)

Tell me, what’s putting a smile on YOUR face?

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CF Awareness Month: Giving a Face to the Disease

a picnic with dad

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.

#CFAwarenessMonth

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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My First Stitch Fix

Update: This post has been updated to let you guys know what I kept and what I sent back. Thanks again for all of the input and stay tuned for my next Fix!

Time to do something different up in here!

I heard about Stitch Fix a while ago, but since I can be pretty picky when it comes to clothes, I didn’t think it’d work for me. The more friends talked (and blogged) about it, the harder it was to resist. And that’s how I ended up doing a fashion shoot in the middle of my kitchen at 9pm. (Big thanks to the husband for being my photographer! I have a feeling he’ll be doing this again…)

What is Stitch Fix, you ask? It’s like having your own personal stylist. Just fill out a (very detailed) questionnaire about your style preferences, choose your delivery date, pay a $20 styling fee, and wait for the five items to arrive at your door. You have three days to try the items on and decide what you want to keep. Keep nothing? All you lose is the $20 fee. Love them all? Get 25% off the total. Plus, the $20 goes toward whatever you decide to keep, whether it’s one item or all five. They provide a return label and envelope to send the items back – at no charge to you!

(One of my good friends has been getting “Fixes” for a few months and does a great job blogging them – thanks for inspiring me to follow suit, Renee!)

As for what I got… take a look at the pictures below and weigh in!

Stitch Fix 5

Shanae Geo Print Tie Waist Dress ($68)

If this dress had a little more shape and different sleeves it would be a keeper. The fabric is super soft and comfortable and the print is just my style. Sadly, I think it has to go back. B+

Update: Returned. Hoping for a similar dress in another Fix, but one that fits a little better.

Stich Fix 3

Brianne Button-Up Silk Peplum Blouse ($48)

Not a fan. I normally love peplum style tops, but this just isn’t flattering. The color, however, is great. C-

Update: Returned. Loved the color, hated the fit.

Stitch Fix 4

Danny 5-Pocket Knit Pants ($78)

Opinions please! I was so excited when I pulled these out of the box – a girl can never have enough black pants, right? And they fit! Two concerns: one, they’re a bit long and bunchy at the bottom; two, at $78, I’m not sure it’s a worthwhile addition to my wardrobe at this point in the season. Thoughts? A-

Update: Returned. As tempted as I was to keep them, I couldn’t justify the price. Especially with two pairs of similar pants already in my wardrobe.

Stitch Fix

Jerrard Heathered Open Front Cardigan ($48)

I think this is a keeper! I’ve been wanting to add an open front cardigan to my (way too big) sweater collection, and this might be the one. It fits perfectly, could be worn to work or running around on the weekends, and is SO VERY COMFY. A+

Update: Kept. I loved this! Comy and versatile with a great price, I already wore it to work.

Stitch Fix 2

Selfridge Cowl Neck Long Sleeve Top ($48)

As you can probably tell by my face, this is going back. The color looks a little too red in the pic – it’s actually more fuchsia, and that’s the only thing I liked about this piece. It’s just not flattering. Adding a lot of volume to an already top-heavy figure isn’t a good look for me. C-

Update: Returned. There wasn’t much about this that I actually liked, and it was far from flattering, so it went back.

I’m definitely happy I gave this service a shot. In fact, I’ve already scheduled my next Stitch Fix! (I feel an obsession coming on…)

Let me know in the comments what you think. What should I keep? What should I send back? Give Stitch Fix a try and see for yourself!

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On Sadness and CF

Life’s been really wonderful recently. *knocks on wood*

I’m loving my job – both what I’m doing and the amazing people I get to do it with. There are plenty of adventures with friends in the coming months. And Mike and I are planning a big trip later this year. I’m soaking up life’s sweetness and feeling very blessed.

But there’s also a sadness I can’t shake.

The older I get, the harder it is to not become my disease. It’s incredibly important to me to be more than cystic fibrosis, but with each big life event I feel more and more trapped by the hard-to-swallow truths of living with CF.

The big one? Knowing a shortened life – one riddled with scary health obstacles – is a strong possibility.

As people get older, life gets more complicated, no matter who you are. And when you throw in a life-threatening illness, the complications seem to grow exponentially. It’s a daily struggle to live my life outside of my disease – to not let it seep into each moment of my day.

My biggest fear is that it’s changing me. The loneliness… the fear… the what ifs… I’m scared they’re slowly chipping away at who I am.

In many ways, having cystic fibrosis has helped me become who I am. It’s made me better, stronger, more empathetic. And I wouldn’t change any of that. But it’s also made me more fearful, less spontaneous, and always worried.

There’s this HUGE part of my life that very few people are able to understand. With cystic fibrosis, there’s no break, no day off, no vacation. Every single day there are pills to take, treatments to do, neb cups to wash, scary thoughts to try and ignore.

It can be isolating and makes me feel separate from people, like I’m part of this “other” group. So I fall into the habit of pulling away or hiding parts of myself in order to feel more normal.

I know that much of this is just that, how I feel, and not how I’m actually perceived. And that’s a reminder I keep tucked away to pull out at times like this.

I’m sorry I’ve been absent from this space. It was mostly because life’s been keeping me busy with lots of goodness.

And partly because I couldn’t find the words. While I’m still not sure I explained it perfectly, I hope it at least shed some light on the emotional difficulties that can come with chronic illness.

Tonight I’ll make dinner with my husband, have a glass of wine, do my meds (while watching the hot men of “Chicago Fire” because, hello, that makes anything better), and let this sadness rest here for a bit.

As always, thank you for reading and allowing me a moment of therapy.

xo

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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

    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: 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?

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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.

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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:

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.

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