The CF community has been hit hard the past couple of months. Many have lost the fight, while others are spending the holiday fighting as hard as they can. No matter how close we are, or how well we know each other, the loss of one of our own never gets easier.
This morning I learned that a man I had only started to get to know passed away. He was an incredible force in the community and had dedicated his life to advocating for this devastating disease.
The news popped up on my Facebook feed in the middle of a meeting, tears immediately springing to my eyes. I silently slipped out, took a few minutes, got a hug from a coworker, and went back in. But this sadness has stuck with me. Sadness for him. For his family. For his community that ran wide and large.
And sadness for those of us with CF. It’s impossible to explain what it’s like to watch your friends die. To know that it’s only going to keep happening. That the older we get, the more friends we’ll lose.
To watch people die from the very disease you have is its own kind of torture.
Sometimes it’s enough to make me want to shut it all out. To turn away and not face what’s happening. But these are the people who understand me the most. Who know my fears and frustrations and anger. We NEED each other–we provide a support that no one else can.
Which is why we have to keep fighting. Even when it feels like an uphill climb we can’t win. ESPECIALLY when it feels like we can’t win.
My CF BFF and I made a pact: that we’ll be here, supporting each other, until we’re 80. And I’m going to do my damnedest to make that happen–for every. single. one of us. And I can’t wait for the day we can celebrate our win, together.
Guys, I can’t even begin to explain how much all the love you showed after my blog post meant to me. You always know exactly how to lift me up when I need it most. THANK YOU. I often fear I leave this space for too long and will come back to silence, but you are some of the most loyal blog readers I could ever ask for. Thank you for that, too.
Basically, just know I am so very grateful for each and every one of you ❤
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In some not so great news, after over two weeks of not feeling well, I’m heading to Hopkins tomorrow (Tuesday) to see if they can figure out what’s going on.
I’m coughing up more mucus – well, coughing more, period – and I have a deep ache in my chest. Despite doubling up on treatments – a process that takes three to four hours a day – I still don’t feel as well as I should. Better maybe, but not great.
(That pic up there? That’s me and my VEST – a form of airway clearance. We’ve become pretty close lately. Maybe I should name it – suggestions welcome.)
Doubling my treatments means meds and work alone takes up 12 hours of my day. Not eating, not sleeping, not doing regular household things, not spending time with Mike – just meds and work. And I might be a little less grumpy if it was helping, but It’s frustrating to work twice as hard to feel only half as good.
But what’s weighing on me most heavily is the fear that’s always in the back of my mind: What if this is it? What if this is my new normal? What if I don’t get to feel better than this?
Because that’s what cystic fibrosis is. A progressive disease that no matter what I do gets worse with time.
I know that kind of thinking doesn’t do any good. So instead I’m telling myself this is just a hiccup. Some extra gunk that needs clearing out. A bacteria they can treat. And with some time I’ll get back to feeling like myself.
We are here to awaken from our illusion of separateness. – Thich Naht Hanh
For a long time my life looked just like my friends’. I graduated high school and went to college where I did college things like go to parties and join a sorority. After college I got a job, moved into my own apartment, and started my adult life. I bought a house. I got married. All things my friends were doing, too.
Suddenly I feel different. People are having babies. Advancing their careers. Planning their futures.
All things I’m not sure I’ll ever get to do.
I don’t know if it was turning 30 – spending so much time thinking about that milestone and what it means. If it was spending weeks planning #for30more – being consumed by all things cystic fibrosis. Or if it was some combination of the two. Or neither. But I’ve been struggling.
Struggling not to suffocate from the unending sadness.
Struggling to feel joy for friends and their milestones – occasions I would normally love celebrating.
Struggling to participate in normal, everyday conversations; letting them get drowned out by a constant internal conversation, one full of questions with no answers; of “yes, but”s; of my biggest fears.
Struggling to relate to almost everyone. And it’s been so very lonely.
Because of this I’ve been pulling away; hiding again; finding comfort in the isolation – a place that’s lonely and sad, yes, but is also a place where I don’t feel like an outsider. I don’t have to fake it or pretend everything is okay; instead I can cry and get angry and welcome the pain in. I can try to get comfortable with these things rather than push them away.
And I hope that by giving myself the time and space to explore the pain and sadness that comes with having a terminal illness, I’ll find my way back. Back to those conversations, back to my friends. Back to myself.
Happy Monday, wonderful people! I’m peeking in to announce today’s #for30more giveaway, and this one is extra special to me because my very talented friend Will Holman generously donated one of his super cool handmade road sign bowls (worth $75). Made from vintage road signs and license plates, the idea came from oragami. The sturdy aluminum bowl can be used for anything from a fruit bowl to a car key holder (considering how often I misplace my keys, this is much-needed in my house).
All you have to do for a chance to be the lucky winner is…
Share via social (Instagram, Twitter, Facebook, etc.) using the hashtag #for30more (this makes it possible to track who’s entered). For example, you can tweet something like: “I’m supporting #for30more AND entered to win a road sign bowl from @objectguerilla! RT + donate to enter: bit.ly/for30more”
Donate! With less than halfway to go and 18 days left, YOU can help me reach my goal… and my 30th birthday wish!
You must share/donate by 11:59 p.m. on 9/8. The winner will be chosen on Tuesday.
And be sure to follow Will at @objectguerilla to see what other amazing things he’s making! (I especially love his shopping cart chair.)
I want to give a big thank you to Renee for heading up #for30more’s giveaways while I was on vacation – she did a fabulous job. Now that I’m back, I’m going to try to fill her shoes, so you can start coming here to see what we’re giving away the rest of the month. And we have some GOOD ones in the next few weeks.
I must say, today’s is pretty darn awesome (I really wish I could win it!). Tiffany Soto, a well-known sake expert, has generously donated 3, yes THREE, bottles of sake: 2 bottles of Suzaku Junmai Ginjo ($60 each) and one of the most awarded sakes in history, Otokoyama Junmai Daiginjo ($200) – that’s $320!* A couple of years ago I attended a sake tasting of Tiffany’s and instantly became a sake fan, and now you can become one, too.
So, how can YOU be the lucky winner?
Share via social (Instagram, Twitter, Facebook, Pinterest) using #for30more. (For example, you can tweet something like: “I’m supporting #for30more AND entered to win 3 bottles of sake from @heysakelady! RT + donate at bit.ly/for30more to enter.”
Bonus points for adding the following hashtags: #cysticfibrosis #takethatCF #cureCF
Donate to be entered to win! We may have reached the halfway mark (!!!) but that still means we have $7,500 to go – and every little bit counts!
You must share/donate by 11:59 p.m. EST on 9/5. The winner will be chosen on Saturday.
(If you want Tiffany to tell you all about sake, be sure to follow her at @heysakelady and visit her at Alex Smith’s new venture, Azumi.)
I’m back! Since you never really know who’s reading this little ol’ blog, I kept it a little quiet that Mike and I were going to be out of the country for two weeks. It was a dream trip, spending four nights each in Iceland, London, and Paris. And once I get all my thoughts together about it I promise to share more. (But for now, you can see plenty o’ pics by following me on Instagram.)
I actually launched For 30 More while I was gone – something I couldn’t have done without my amazing, talented, and super helpful friend, Renee. Gosh guys, you have totally overwhelmed me with your generosity. Not only have the donations been pouring in (barely one week in and more than a third of the way to my goal), but the tweets and Facebook posts and sweet notes have left me truly humbled. THANK YOU. Thank you, thank you, thank you.
I am SO excited to see what the next 24 days brings. There are still TONS of fun giveaways left, and a couple other things in the works, so stay tuned!
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While I know it’s technically not fall yet, September 1 feels like the official end of summer. It also marks the start of my very favorite time of year… and my birthday month! Clearly, there’s lots to look forward to. What exactly, you ask?
kicking off my 31st year with some of the very best friends
(*My blog friend Jessica, of How Sweet It Is, will be making an appearance as part of her book tour for her very first cookbook: Simply Delish. I’m SO FREAKING excited to get to see her ON my birthday, and highly suggest if you’re in Baltimore to go say hi to her, too.)
Since I’ve been a bit absent, I thought I’d share a few things I’ve been enjoying.
– This weekend, using the excuse that I had to restock our fridge, I spent a ridiculous amount of time at a new Whole Foods. #happyplace
– Read “We Were Liars” by E. Lockhart while on vacation. While it’s not one of the best books I ever read, it was a fast and entertaining read.
– Can’t stop listening to this, this, and this.
– Bought a pair of these to take on our trip and LIVED in them. What took me so long?
– Binge watching Orphan Black and Homeland. #cantstopwontstop
– Made this twice in one week. Add it to your meal rotation, stat.
– My bestest friend in the world will be giving birth any day now to a beautiful baby girl – I am BEYOND thrilled for them and cannot WAIT to squeeze the cheeks off of her.
P.S. Renee + I will be announcing another giveaway today! You can be entered to win via donations and spreading the word (make sure to use #for30more!). Keep an eye on Renee’s blog for more info.
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 momentum. Thank 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!
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.
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.
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.
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.
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.
From A to Pink | A Blog by Katharine Scrivener 