A Little Less Lonely

This post originally appeared on the Cystic Fibrosis Foundation’s blog. While this was written a while ago, much of it still applies – and gives a peek into life with CF.

The other night I got in bed around 11 p.m. to read until I fell asleep, which I hoped would be soon as I was anticipating a 6 a.m. wake-up call for my first round of treatments before work. Just as I lay my head down after closing my book, a cough bubbled up in my throat, as if my lungs knew I was attempting sleep. I spent the next two hours sitting up in bed coughing up mucus, getting more and more anxious as each minute passed and my hours of much-needed rest dwindled.

Somewhere around 2 a.m. I finally drifted off, with only four hours between me and the start of the day, knowing that this would follow: I’ll wake up, drag myself downstairs, spend about two hours doing my treatments, and then get ready for the day. I’ll arrive at my office at 9 a.m., coffee in hand, makeup on, and no one will know what my night actually looked like.

It is in these moments – when cystic fibrosis tries to get the best of me – that I feel most alone.

For most of my 30 years, my life has been on the same path as my peers’. I graduated from high school, and then went away 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 got married and bought a house. All the things my friends were doing, too.

But suddenly things feel different. Friends are advancing in their careers, starting families, and planning their futures. And I’m not sure I’ll be able to do any of those things.

Instead, I worry about why my cough has increased, what my next sputum culture will show, and how I’ll be able to make it through the day on four hours of sleep.

I spend my days doing treatments, going to work, doing more treatments, getting some (restless) sleep, only to wake up and do it all over again. I’m often tired, and constantly coughing or congested.

And that’s just the physical stuff.

Emotionally, I struggle not to feel like I’m suffocating from the unending sadness that comes with having a life-shortening illness. I struggle to feel joy for my friends and their milestones. I struggle to relate to almost anyone. And that is so very lonely.

Isolation, according to the all-knowing Merriam-Webster, is “the state of being in a place or situation that is separate from others.”

And that’s a pretty good definition of how I have felt as I’ve entered my 30s. To live a life, day in and day out, that few people understand is hard – especially when us CFers look mostly healthy on the outside but often feel a lot worse on the inside.

Creating a community online has been an immense help in fighting this loneliness. It will never be a substitute for a real hug or a coffee date, but it helps make us all feel a little less alone, a little less misunderstood and a little less like we’re in this by ourselves.

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On Not Feeling Well and a Thank You

the VEST – my best friend the past couple weeks

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 ❤

* * *

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.

On Friendship, Cheryl Strayed, and Unending Loneliness

“Remember, we are all the same at our core. Everyone wants to be happy and no one wants to suffer.” – James Gummer

In the last few months I must have started and stopped a half-dozen posts, only to delete them out of frustration. Putting into words what I’m going through feels impossible. Plus, I get caught up in the fear of being judged. I know that in comparison to a lot of other CFers – to a lot of other people that are struggling – I’m lucky. I have an incredibly supportive husband, a beautiful home, a job full of talented and kindhearted people, and some deeply loving friends.

But I wouldn’t wish CF on anyone. And I’m trying to get comfortable with owning my feelings, my experiences, my story. Yes, my struggle isn’t the same as someone else’s, but that doesn’t make it any less valid or any less painful. Or any less relatable.

I believe that sharing in each other’s troubles and triumphs makes us better, more empathetic, more compassionate people. I hope I’m right.

***

I’ve talked about sadness, loneliness, fear, exhaustion before.

In the past those feelings have faded and with some time I get back to feeling like me.

It’s been more than six months and I still don’t feel like myself. I can’t shake the sadness. The fear. The anger. But mostly the loneliness.

Cystic fibrosis is a hard disease to understand, even for those who have it. I’m constantly learning from the CF community because this disease is different for each and every one of us.

It’s especially mystifying for those without it.

For the most part, cystic fibrosis is invisible. I look healthy. My life looks “normal.” Even the hacking cough is often assumed by others to be just a cold.

Inside is another story. I spend hours each day doing treatments and taking pills, to feel only a fraction as healthy as others. Those same meds, designed to help me feel better, have side effects – an upset stomach, headaches, risk of vision loss, etc. My sleep is often full of coughing fits at 1am, 3am, 5am. I wake up more tired than when I went to bed. I spend mornings spitting mucus into the sink in between putting on my makeup and deciding what to wear. Sometimes I cough so hard I throw up.

Very little of this is seen unless you live with me. Even then, you can’t see how some breaths are a struggle, or what it’s like to have an imaginary elephant sitting on your chest, or how it feels to cough for 12 of your 24 hours each and every day.

I don’t say this for pity, but because sometimes I fear I’m not honest enough. Putting on a brave face and being as positive as possible gets me through hard days, but it doesn’t always give an accurate look at what this life with CF is really like. For those without CF, it is an incredibly tricky, difficult, deceiving disease, which makes it hard to understand.

Because of that, I feel profoundly alone.

Part of the loneliness is a reality I need to get comfortable with. I can’t go cry on the shoulder of one of my CF friends because most are scattered throughout the country, and even if they aren’t we carry bacteria that’s dangerous to each other. And my friends without CF can never know what it’s like to be in this body. To fear every cough, every appointment, to know how uncertain – and short – my future might be.

The last few months have become so consumed with all things CF, it’s hard for me to untangle myself from it. It feels like everything – having kids, pursuing a career, traveling, finances – is wrapped up in having CF.

I’m starting to fear that being friends with me is too hard for some people. That my frequent sadness weighs them down. My inability to have conversations about life – without CF being a part of it – is frustrating. I fear they tire of hearing how hard it can be. How scared I am. That I need too much. That I expect more than most.

I am not like most 30 year olds.

I know it can be hard to figure out what to do or say or how to be around me. One of my writing idols, Cheryl Strayed, put into words what I couldn’t: The best thing you can do for anyone going through something, whether that thing is short lived or permanent, is to “bear witness” to their pain, their struggle, whatever it is.

“…the kindest most loving thing you can do for her is to bear witness to that, to muster the strength and courage and humility it takes to accept the enormous reality of its not okayness and be okay with it the same way she has to be.

That’s what the people who’ve consoled me the most deeply in my sorrow have done. They’ve spoken those words or something like them every time I needed to hear it; they’ve plainly acknowledged what is invisible to them, but so very real to me. I know saying those cliché and ordinary things makes you feel squirmy and lame… It feels lame because we like to think we can solve things. It feels insufficient because there is nothing we can actually do to change what’s horribly true.

But compassion isn’t about solutions. It’s about giving all the love that you’ve got.”

If I can give one piece of advice, it’s this. If you have someone in your life who’s struggling, let them know you’re there. That they are enough. That they’re doing a good job. And that you’re sorry they have to go through this hard thing. That it sucks.

No, you can’t fix it. But they know that and they don’t expect you to. The best thing you can do is love them as best you know how.

And if you’re feeling lonely, like me, my words of wisdom are to sit with it. Feel as much as you can and know that this period of struggle is a lesson that will bring you to a version of yourself that’s stronger, more compassionate, and ready for whatever life throws your way.

At least, that’s what I’m telling myself.

On Finding My Way Back

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.

Things + Stuff

Y’all, I owe you so. many. posts. Life’s been a bit overwhelming lately, thanks to a (hopefully minor) CF setback, a busy season at work, and the end of #for30more. I was riding on such a 30th birthday/#for30more high, that the not-so-good health news rocked me pretty hard. Not to mention it means more meds, which brings with it a whole slew of side effects. Needless to say, I’m not feeling like myself and have been struggling just to make it through each day in one piece. But I’m doing my best to take each day as it comes and telling myself that this too shall pass.

I’ll be back with a more meaty post, but in the meantime I figured I’d share some things that have been making me smile. Because smiling’s my favorite.

Reading

– FINISHED: We just discussed Daring Greatly in book club, and I’d highly recommend it. If you’re feeling a bit vulnerable and/or exposed (and who doesn’t feel that way at some point?), give this a read. It put my favorite pink highlighter to the test.
– CURRENTLY: Eleanor & Park, thanks to the 1,291 rave reviews I read. So far, its everything I’ve hoped. I’ll report back once I’ve finished.
– ON DECK: Thanks to Jaclyn’s review, I suggested A Constellation of Vital Phenomena as our next book club read and everyone was on board! I’m eager to see what all the intrigue is about. (If you’re looking for your next read, check out Jaclyn’s blog – she always makes me want to pick up books I might have otherwise overlooked.)

Watching

I’m a TV fanatic, it’s true. I often blame my time spent doing meds as the reason I must watch ALL THE TV, but that’s not entirely true. Yes, I watch about 1 to 2 hours of TV most days for CF treatments, but my list of shows runs much longer. Right now my top three are Parenthood (I can’t even talk about how it’s the farewell season; also ALL THE TEARS – I cannot go a single episode without crying. #truth), Nashville (major Connie Britton girl crush over here), Scandal (I mean, no explanation needed, amiright?!). Someday I’ll divulge my full list… if I can get over the shame. (Who am I kidding? #noshame)

Listening

– To get me through my current bout of the sads: Joy Parade, Lennon and Maisy
– For the teeny bopper that lives inside: Steal My Girl, One Direction
– On repeat because I LOVE the song AND it stars a kid with CF: I Lived, One Republic (Seriously, the awareness this video brings to the CF community is phenomenal. A must watch, no matter who you are.)

Looking forward to…

Thankfully, despite the current bump in the road, I have lots to look forward to: this Wednesday I have the pleasure of speaking about CF and turning 30 at a CFF netowrking event at Dooby’s; a massage, thanks to a very thoughtful birthday gift from my husband; Halloween! I normally am not a big fan of this holiday, but handing candy out to kids is one of my most favorite things ever; a new season of Stoop Stories (starts Monday, October 22 if you’re in the area!); celebrating our second wedding anniversary (and 15 years of knowing each other – holy crap); a visit to Chicago to meet the very squishable Lucy, my best friend’s brand new babe.

The next few weeks are shaping up to be good ones. And I’ll be holding on to that goodness to get me through.

Thanks for the constant support – it helps more than you’ll ever know ❤

#for30more giveaway #13: mini photo session + custom print

Aaaand we’re back! You didn’t think I’d end #for30more early just because we reached $15k, did you? (Speaking of which, I can’t believe you guys got me to my goal a whole week early. I seriously did a happy dance in my office. And took a picture of me jumping. And posted it to Facebook and Instagram. And told about everyone I could. So thank you. Thank you, thank you, thank you! I’ll write a more eloquent thank you soon, promise. But for now, just know that you’ve totally made my 30th birthday.)

With only THREE more days until my 30th birthday, there are still more giveaways + plenty of time to donate. Let’s see just how much more we can raise!

Today’s giveaway was donated by my wonderfully talented co-worker Marlayna Demond. An amazing photographer, Marlayna has generously offered to give one lucky winner a mini photo session! Worth $150, you’ll get to spend 20 to 30 minutes creating memories to last a lifetime. (You’ll also receive 15 digital files on a USB drive, as well as one 11×14 print. For dates and more details, see above image.) Make sure you check out her gorgeous photography on her Facebook page!

Along with the photo session, my friend Dianne will turn a photo of your choosing into an 8×10 custom print featuring your favorite song lyrics or quote (see below for an example. And yes, that’s my beautiful friend, Renee + her husband Steve!).

All you have to do for your chance to win is…

• Donate! $15,000 was my goal, but I’d love to raise even more money for the Cystic Fibrosis Foundation, so let’s keep it going! (If you’ve already donated, no need to donate again in order to be entered for your chance to win.)
• Share via social! The more platforms you share on, the more chances you have to win. Make sure to include #for30more + the link to my Fundly page: bit.ly/for30more. You could post something like: “I support #for30more AND could win a photo session + custom print! Donate/share: bit.ly/for30more #cysticfibrosis”
• Use more hashtags for an extra entry: #cysticfibrosis #cureCF #takethatCF
• Please share/donate by 11:50 p.m. on Tuesday, September 23. The winner will be announced on Wednesday.

#for30more giveaway #10: Charm City Run

Let the countdown begin! Just 10 days and less than $3k to go. I am SO FREAKING EXCITED and over the moon. Ya’ll = the best.

And with that, it’s time for ANOTHER giveaway! I’ve been overwhelmed by the generosity of people – thanks to all those who donated giveaways, there will be something every weekday through the end of the fundraiser (Friday, September 26), so stay tuned!

This one is for all you fitness buffs (or those aspiring to to be). The generous folks at Charm City Run will give today’s lucky winner a water bottle and $50 gift card!

The deets:

• Donate! $15k is so close I can taste it. (Well, not really, but you know what I mean.) If you’ve already donated, gold star for you! And no need to donate again (unless you really really want to. I certainly won’t stop you).
• Share via social! The more platforms you share on, the more chances you have to win. Include #for30more + the link to my Fundly page: bit.ly/for30more. Something like: “I’m supporting #for30more AND entered to win $50 from @CharmCityRun! Donate + share to enter: bit.ly/for30more #cysticfibrosis”
• Use more hashtags for more chances to win: #cysticfibrosis #takethatCF #cureCF
• Please share/donate by 11:59 p.m. on Tuesday, September 16. I’ll announce the winner on Wednesday.

#for30more giveaway #9: Eikoh Design Studio + wine

Happy Monday, wonderful readers! Hopefully you had a relaxing weekend + that your week is off to a good start (personally, my giant cup of coffee made this morning possible).

I’m here with – what else? – another #for30more giveaway! I feel like I sound like a broken record, but seriously, you guys are the BEST. With 11 days left before the big 3-0, I’m 75% of the way to my goal. That means there’s just $3,615 left to go! And with you all behind me, I know I can get there.

Now, for today’s giveaway.

The very generous + talented Jaime Leiner Gill of Eikoh Design Studio will gift the lucky winner with a pair of personalized glasses, a $40 value! The recipient will select a standard design to personalize, and can choose their preference of glassware (stemmed or stemless, pint, rocks, or champagne). Please redeem by 12/31/2014. The winner will also receive SIX bottles of red wine (a $150 value) to accompany their glassware – a perfect pairing!

And in case you’re new around these parts, here’s how it works:

• Share via social (Facebook, Instagram, Twitter, etc.). The more platforms you share on, the more chances you have to win. Make sure you use the hashtag #for30more (so we can track your entry!) and the link to my fundraising page: bit.ly/for30more. For example, you could tweet something like: “I’m supporting #for30more AND entered to win @eikohdesign glasses (plus 6 bottles of wine)! Share + donate to enter: bit.ly/for30more
• Donate! I’m getting SO CLOSE to $15k + every little bit gets me that much closer to my 30th birthday wish. Plus, you’re helping all of us living with cystic fibrosis have bigger + brighter futures – what could be better?
• Want more chances to win? Include one or more of the following: #cysticfibrosis #cureCF #takethatCF
• You must share/donate by 11:59 p.m. on Monday. I’ll announce the winner on Tuesday.

On your mark, get set, $15k!

#for30more giveaway#7: Apothecary Wellness

First off, I want to thank you all again for being so supportive during the last few weeks of #for30more. Every day I’ve been lifted up by someone’s thoughtfulness, which is a lovely feeling to have. I hope each and every one of you get the chance to feel so very loved. With 16 days to go, I’m almost to $10K. So keep sharing, donating, and helping to spread the word about my 30th birthday wish! I can’t wait to see what else is to come as we get closer to September 26.

I have the wonderful honor of being featured on my friend Lindsay’s blog as a part of Invisible Illness Awareness Week. She’s such an inspiration for how to face a diagnosis head on, and I’m so happy to have met her. So go check out her interview of me when you have a few moments. (I also have a few non-giveaway related posts in the works, those are just always a little slower to come for me. So stay tuned!)

Today’s giveaway is truly a treat. A few years ago, after my skin decided to act like that of a 13-year-old’s, I made an appointment with Christine at Apothecary Wellness. Her facials not only cured my painful skin, but were some of the most relaxing moments I’d had in a long time. And the rest of Baltimore agrees with me – Apothecary Wellness was recently voted Best in Baltimore, winning Baltimore Magazine’s readers’ poll for Best Spa.

Now YOU have a chance to experience Apothecary Wellness’ heavenly relaxation for yourself. Christine + Rachel, the fabulous ladies behind the best spa in Baltimore, offered up one 60-minute massage and one custom organic facial, worth $175 but priceless in terms of how relaxed you’ll be afterward.

By now you know the drill, but I’ll lay out the rules just in case:

• Share via social. The more platforms you share on (Twitter, Facebook, Instagram), the more chances you have to win. Make sure you use the hashtag #for30more and link to my fundraising page (gotta make it to that $15k!). For example, you could tweet something like: “I’m supporting #for30more AND entered to win a massage + facial from @ApothecarySpa! Share + donate to enter: bit.ly/for30more
• Donate! Every little bit counts, and reaching my goal would be the best birthday gift EVER. Plus, you’ll be helping all of us living with cystic fibrosis have bigger and brighter futures – doesn’t that make you feel good?
• You must share/donate by 11:59p.m. on Wednesday. I’ll announce the winner on Thursday.

Now who’s ready to be pampered?

#for30more Giveaway #6: Road Sign Bowl

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.)

Happy winning!