Checking In

Good morning!

Just wanted to check in and THANK YOU for all the support and healing thoughts from my last post.

I’m hanging in there thanks to the best family, friends, and fiancé a girl could ask for.

I’ll be back soon with more updates.

Have a great Tuesday 🙂

xoxo
K.

 

Not What I Wanted to Write

(Warning: I wrote this while in a place of upset, so keep that in mind and bear with me. In the interest of being honest and showing you a “behind the scenes moment,” I recorded what I was feeling after receiving some not so great news and wrote this post based on it. I’ve since cried it out – a LOT – and while I’m still worried and sad and anxious, I’m dealing with it and am feeling hopeful (with my fingers and toes crossed!).)

Cystic fibrosis is a bitch.

I was ready to write a post about the GOOD in my life. Wedding planning. Buying a house. 73% lung function. The wonderful man I get to do all this with.

And then I got a phone call. “You might have to go on IVs again.” After the wedding (thankfully), for 4 to 6 weeks this time.

A new bacteria is growing and they don’t know what it is yet. In two weeks or so I’ll need to give them another sputum culture so they can determine the next step. One of the three possibilities is IVs.

It’s unfair. I’ve done EVERYthing right. My lung function is the highest it’s been in 4 YEARS. But one bacteria could set me back so they want to get rid of it. As fast as they can. And I get that.

But I just want a break. I want a few months of things going okay. Of normalcy. Of coming home and cooking dinner… going to the gym… getting a good night’s sleep. 

This year has NOT given me that. And sometimes it’s increasingly harder to see the light at the end of the tunnel. To believe that there even IS a light at the end of the tunnel.

I’m still SO thankful for everything I have in my life right now. I’m blessed with so many things. But it’s hard not to feel defeated. To wonder when my life will go back to “normal” or to know when to accept this as my NEW “normal.”

One step at a time. One day at a time. And I’ll get there.

Hope

In a couple of hours I’ll be at Hopkins, waiting to find out if my lung function has gone up enough that we can take the picc line out.

And I’m REALLY nervous.

What if these two weeks didn’t do the trick?

What if it has to stay in longer?

What if my lung function isn’t what I’ve hoped?

It’s those damn “what ifs” again. Each time one pops in my head, I answer with: Then you work harder. A few more days is manageable. And at least I’m feeling BETTER.

That last one is the most important. The change has been gradual, but last night, as Mike and I were setting up the last IV treatment for the day, I decided to take a deeeeeep breath and push it out as hard and as long as I could. Just like what I’ll have to do today, when they take my PFTs (pulmonary function test).

And guess what? It felt DIFFERENT. And GOOD. BETTER.

So even if my lung function isn’t quite where I want. Even if the picc line has to stay for a few more days. I’m letting the fact that I’m feeling better give me HOPE.

And when those doubts creep in, that’s what I cling to. Hope.

I’ll be back to let you know the results. In the meantime, thank you from the bottom of my heart for your words of support and encouragement and love. THAT’S what’s helped get me through.

We’ve Got Two Lives – One We’re Given and the Other We Make

When I read Jenni’s blog post this morning, I felt like she was writing to me. (Go read her post – it’s full of some very wise words.)

“Lately I’ve been having difficulty getting the words out. My thoughts are disjointed paragraphs, and maybe that’s a reflection of life right now.”

2012 has been a tough year so far.

On December 30, Mike’s dad passed away from lung cancer. He was diagnosed in May, completed a round of chemo and radiation, and had been doing pretty well. We all thought Mike would have more time with his dad. But the Wednesday before Christmas, things started going downhill. A week and a half later, we gathered at the hospital to say our goodbyes.

Losing a parent is unlike any other loss. And Mike has handled it as best anyone can. I am SO proud of him.

It’s a long road back to “normal” life, if things can ever be “normal” again. But, like many tragedies, life goes on. So that’s what we’ve been doing. Living life among moments of sadness.

I want to give a HUGE thank you, from the bottom of my heart, to all of those who have been there for us, and especially Mike, over the past few weeks. We’re so lucky to have such an incredible support system. If there’s any silver lining to something like this, it’s realizing how many people you have to lean on.

* * * * *

Moving on to something that is far less important, but something I need to talk about.

A couple days ago I found out I have a stress fracture in my right foot and was put in a walking boot for the next four weeks.

No big deal, I thought to myself. After all, I went through the same thing with my left foot in college, crutches and all. It could be much worse.

But after the first day of lugging around my new accessory (which Mike and I affectionately named Boris), I broke down.

Then, at book club last night – a place where I normally can relax and recharge – I found myself unable to focus. I wasn’t myself.

I think the last few weeks have taken their toll more than I realized. And adding one more annoyance was more than my emotions could take.

When I’m in that low place, where I start to throw a pity party, my life feels full of inconveniences. Coming home at the end of a long day, only to have more than an hour’s worth of treatments to do. Having a coughing fit at my desk in the middle of the work day. Leaving a friend’s house early so I can make it home in time to do my meds. Remembering to wash out my med cups each and every night. I could go on.

Throwing this boot onto that pile only highlights all of the things I’m normally able to ignore.

So I’m in that place again, where I don’t have the energy to give myself to anyone. Right now I want to take care of Mike. To be there in whatever way he needs, while also taking care of myself – doing my meds, fueling my body with good food, getting a good night’s sleep.

And instead of feeling guilty, or wallowing, I’ve decided to let myself off the hook. I’m looking at this as a time to take things easy, to slow down. To reflect on what I DO have, what’s going well in my life and not what’s going wrong.

Because at the end of the day, walking around in Boris the boot isn’t so bad.

A Post in Which I Get Sentimental

Things haven’t been totally rosy around here. And I’ve been struggling with how to put it into words. So stay tuned, because it’s coming.

As for right now, today’s been one of those days. Harried, hurried, hellish. I might have even shed some tears… at work. I know. I’m cringing, too.

And then I remembered what I’m doing tonight. It’s the final event for Baltimore’s 35 Finest Under 35. And it benefits the Cystic Fibrosis Foundation. If you follow me on Twitter, you saw your fair share of tweets about it. But for those of you who didn’t, I’ll sum it up.

This is the fourth year that 35 Baltimore professionals under the age of 35 have been chosen to spend three months fundraising to help find a cure for cystic fibrosis. Last year I was an honoree, and this year I’m participating as an alumni.

Thinking about tonight and what it means to me helped put every trivial thing that went “wrong” today into perspective.

Because for the past couple of months, the support and love that has poured in from family, friends, coworkers, and strangers has been overwhelming.

Thanks to these generous people, I was able to raise just under $8,500. In a time where many people are struggling to keep a roof over their heads and food on the table, this kind of support doesn’t go unappreciated.

I am SO BLESSED.

I will never be able to put into words what it means to have so many people behind me. The thoughtful notes and words of enouragement help keep me chugging along more than you will ever know.

Living life with cystic fibrosis is hard to understand. But with the help from everyone who supports the cause – whether it’s by donating, spreading awareness, or just lending a hand to someone with the disease – I believe we CAN find a cure.

And I’m going to do everything I can to make sure I’m around to see it.

To Worry or Not to Worry

In the world of cystic fibrosis, I often feel like the new kid at school.

Most CF patients are diagnosed before the age of 3, giving them – and their loved ones – a lifetime to become acquainted with the intricacies of living with CF.

As I’ve mentioned before, I was diagnosed at 16. Just a little over 10 years ago. And I often feel like I have a LOT of catching up to do.

Finding out I had cystic fibrosis as a junior in high school was overwhelming. I did what the doctors told me to and less than two years later I was heading off to college.

Without my parents or doctors around to remind me of how important it was to take care of myself, I let my medications and therapies slide.

It wasn’t until about four years ago that I really started taking this seriously. And I often have questions about what’s “normal” for a CF patient versus what’s something I should be concerned about.

Last night was a good example.

At about 2:30am I woke up gasping for air. I have plenty of coughing fits, but I hadn’t experienced anything like this. I would cough, but was then unable to take a breath. It was as if my throat would seize up, and no air could get through.

It felt like this went on forever, when in reality it was probably just a few minutes. But it left me shaking, tears running down my face, as I tried to pull myself together.

After a few gulps of water and some deep breaths, I was okay. I went back to sleep, waking up just a few hours later feeling completely drained.

And I’ve felt like that for the rest of the day. As if I didn’t get a second of sleep.

No doubt, something like that is taxing on my system. Heck, my body gets tired some days from just keeping my lungs working. But the worrier in me can’t help but wonder if this is a sign of something bigger going on.

I know that “bad” days are just a part of living with CF.

But deterioration of the lungs is the eventual outcome. And nights like last night make me wonder how I can tell a bad day from something worth worrying about.

For now, I’ll just take it easy and monitor how I’m feeling. Hopefully whatever spasm I had last night was just a result of the (awesome) Cto5k run I did and I’ll be back to my energetic self in no time.

CF’ers out there, any advice?

On a more fun note, I’m excited to tell you that this ol’ blog has been nominated for a Mobbie in the Best Personal Blog category! If you have a second, please head on over and put in your two cents (whether it’s for my blog or not!). You can vote every day from now until November 10.

One more thing: I wanted to thank every single one of you for reading. There have been times where I wasn’t sure if this blog was worth continuing, but whenever I post something difficult, your response makes me realize that this is exactly what I need. So thank you. Your sweet comments, thoughts, and words of encouragement make me feel more supported than I could ever express.

Deep Thoughts on a Thursday

I’m having a hard time putting my thoughts into words. Which is why this blog has consisted mostly of Well-Being Wednesday posts for the past couple of weeks. But I don’t want to disappear from this blog again. And I don’t want my blogging to become halfhearted, either. So instead of writing a half-assed Well-Being Wednesday, I spent my time writing this, to share something that’s been swirling around in my head for quite some time.

Expectations. Learning to ask for help. Loneliness. The invisibility of CF.

What I’m struggling with right now involves all of it.

Most days I’m okay. I live my life like many 27 year olds. And I’m able to detach myself from the cystic fibrosis label. I think that’s a good thing.

For the most part.

The downside is that the severity of what having this disease means is often invisible.

Just yesterday I spoke with a man who lost his wife to CF at the age of 41. That’s only 14 years older than I am now. And it TERRIFIES me. Because that’s the reality of this disease. Unless a cure is found, it will kill me. I often tiptoe around this fact because I try to remain positive. But sometimes it feels good to be honest. To show people the ugly side of CF.

I’ve said it before and I’ll say it again: I don’t want pity.

But there are times where I do need acknowledgement. Support. And the understanding that it’s a heavy load to carry.

I can’t do it alone.

I want to make it clear that I appreciate how lucky I am. I have an incredible family who has been there for me at every bump in the road, and continues to be. And I have a boyfriend who deals with much more than most 28 year old guys. He goes above and beyond every.single.day.

But there are times I’m disappointed by people.

I would like to think that if I had a friend or loved one battling something as big as a terminal illness, I would help in any way I could.

And I have both family and friends that do this. They know who they are and I will be forever grateful for them.

There are also people who don’t. There could be a million reasons for this. Me not communicating what I need. Them not understanding the seriousness of this disease. Me expecting too much. The list goes on.

What I struggle with is knowing what to do. Write these people off? Accept them as they are and know who I can count on? Verbalize my feelings?

Being one of 30,000 with a disease there are no in-person support groups for is lonely. Having people rally around you when you need them to makes that loneliness a much lighter burden.

“Every day, think as you wake up, today I am fortunate to be alive, I have a precious human life, I am not going to waste it. I am going to use all my energies to develop myself, to expand my heart out to others, to achieve enlightenment for the benefit of all beings. I am going to have kind thoughts towards others, I am not going to get angry or think badly about others. I am going to benefit others as much as I can.” ~ Dalai Lama

Well-Being Wednesday

Last night I promised myself I’d go to yoga. I knew my muscles could use the stretching, especially after the training I’ve started, and I always leave feeling peaceful (who doesn’t need that?).

By the time I left work and got home, I knew it just wasn’t happening. Too many thoughts/worries/to do’s were crowding my head – namaste-ing myself into a place of relaxtion would be impossible.

So instead I went home. I made dinner, got my treatments finished early, caught up on Grey’s, and wrote down a few words for an event I’m speaking at tonight.

I was able to get to bed earlier than usual, and with a clear head.

Sometimes taking care of your well-being is knowing when to say no. It’s easy to talk yourself into things because they’re good for you, but it never hurts to take a break.