A love story (of sorts)

I’ve said it before, and I’ll say it again: I don’t need flowers, poems, or over-the-top gestures. One of the most romantic things Randy does for me is sterilize my nebulizer cups.

But it hasn’t always been that way…

Spending a lifetime dealing with the challenges and unpredictability of CF can make a person (me 🙋‍♀️) long to control whatever tiny thing they can.

The things I can control are related to my healthcare routine. I may not get to determine the outcome or know what bumps lie in the road ahead, but if I do everything within my power in a very specific way, I can face the unknown with a bit more composure.

(Yes, I’ve talked about my control issues in therapy.)

When Randy came into my life and wanted to start helping with things related to my care, I wasn’t sure I wanted him to! It took a long time for me to let him take over certain tasks (even small ones like sterilizing nebs) and it wasn’t an easy thing for me to do.

But in time, I learned that letting go of some of the smaller things is not only okay to do, it’s pretty freaking awesome!

While he and I both know I’m totally capable of doing things on my own, it’s nice to know that I don’t always have to.

He’s got my back.
And my nebs.
And to me, that’s real love.

A little (re)indroduction

It’s the beginning of a new year and there are some new people here, so it seems like an appropriate time to quickly (re)introduce myself.

Hey there. I’m Jenny! I’ve been blogging off and on for the last 12 years. Does that blow your mind as much as it blows mine? Here are a few things about me:

• I have cystic fibrosis, which is what I’m assuming led you here in the first place. I talk about living with CF a lot, but I also share things about motherhood, everyday life, mental health, and other things I’m passionate about. ⁣

• Both my older sisters were born with CF, so I was diagnosed at birth. My oldest sister, Shannan, passed away at the age of 14 while awaiting a double lung transplant. My other sister, Teresa, is 40 years old, has 4 beautiful children, and is doing well.

• Born in San Diego and raised in Utah, I’ve spent my whole life around animals, including: dogs, cats, chickens, goats, rabbits, horses, and a hedgehog at one point. (I can still milk a goat like nobody’s business, FYI.)

• My daughter, Morgan, is the light of my life! I was previously married for 7 years, which I’ve learned is something many of you here didn’t know! ⁣Randy is not Morgan’s biological father, but he completes our family perfectly.

• I met Randy on Tinder and was pretty certain he might try to kill me on our first date. Good news: I ended up falling in love instead of being murdered (whew!) He changed careers and moved away from his home to start a life with us. We’ve been together for 4.5 years, and he’s never tried to kill me. Not even one time! ⁣

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• Some of my favorite things include: coffee, sunsets, yoga, the ocean, mountains, true crime, new bed sheets, taking pictures of everything then going through those pictures to reminisce, making new friends, and writing. ⁣

If you’ve made it this far, congratulations! And sincerely, from my heart, thank you for being here. It means so much that you choose to share your time and life with me, if even in the smallest way.

If you ever have a question, ask! If you want to send a message or email, do it! If you’ve been reading but haven’t commented, I really want to hear from you!

Just for fun, tell me one random thing about yourself! 👇🏻

The way I see it…

“We just see things differently,” is something I’ve heard a lot recently. And I suppose that’s true.
Where some see oppression, I see an accessibility tool. I am able to navigate the world more safely when both myself and others are wearing masks.

Where some see a violation of rights, I see concern and kindness for others. A person’s willingness to wear a mask for the protection of the people around them is, to me, an incredible act of love.

Where some see “fake science” and biased information, I see sound evidence coupled with years of personal experience. I’ve worn masks for decades (with lung function as low as 27%) without ever experiencing complications. My team of care providers and dear friends in healthcare have safely and effectively worn masks throughout their careers, sometimes for the duration of entire shifts or lengthy surgeries. (Spoiler alert: they’re all fine.)

Where some see “sheep” blindly complying and following sinister orders, I see community, love, unity, and a combined effort to care for one another and combat our common enemy.

If the way I see things turns out to be wrong, I will have unnecessarily worn a mask for a few months. No biggie. But if the way I perceive things is correct, and people have refused to take precautions, we’ll experience a tremendous amount of preventable loss and heartache.

I’ll wear the dang mask. This is something I’m willing to be wrong about.

Trikafta update

Today marks six months (180 days) on Trikafta for me! 🎉

Quick explanation for those unfamiliar with Trikafta: it’s the newest of four drugs called CFTR modulators. These medications are specific to cystic fibrosis and help correct the underlying defect in our cells rather than just treating symptoms.

I started Trikafta in November, near the end of a 2 week hospital stay. For some people, within hours of taking their first dose they noticed changes in their breathing or how their body was feeling.

I was NOT one of those people.

The changes I experienced were slower and more subtle. I began feeling like I was disappointing people when they’d ask how I was feeling because I didn’t have much to report.

My biggest “wow” moment happened when, after two months on T, I was sledding with my extended family and ran up a hill without thinking twice about it. I don’t run ever run, but especially not uphill! When I realized what I’d just done, I did it again and again.

Now, six months into this journey, I still can’t tell you when certain things happened since it’s been so gradual, but I can tell you that my body has indeed transformed.

For one, I don’t cough anymore. It’s the most bizarre thing! Something that has been so normal my entire life is now just gone!

I saw a roughly 8% increase in lung function, giving me my highest PFTs since 2014.

I rarely cough up any mucus. My treatment needs haven’t changed – I’m still doing just as many as I was previously, but I’m not getting a mouthful of mucus each time I cough. (CF is so glamorous, isn’t it?)

My digestion has changed significantly, and I’ve gone from needing to take 5 enzymes with meals to 2.

I’m not sure many people understand how painful CF can be on a daily basis. Lungs, joints, stomach, sinuses, overworked muscles — something is always hurting. But I now have more pain free days than I’ve had in years.

This isn’t even a complete list of the changes I’ve experienced, just the most significant ones. Most days, I still have a hard time wrapping my head around it all to be honest.

Every single day, I am amazed.
Every single day, I remain hopeful.
Every single day, I am grateful.

CF Awareness Month

May is Cystic Fibrosis Awareness Month! If you’ve been around here for any length of time, you know that CF awareness is pretty much always my MO, but this month is made for it!

Throughout the month, I’ll continue to share things about CF here and there (per usual) but what I really want to do is let YOU take over.

If there is anything you’d like to know about CF, particularly regarding my personal experiences, please ask! No question is too big or small, no topic too sensitive.

Are you curious about what life was like with three CF kiddos in our family? Do you wonder how the partner of someone with CF feels (a question for Randy)? Do you want to know more about what CF is or how it affects the body? Do you have questions about pregnancy or parenthood and CF? CF and college? CF and relationships?

I would love to answer these or any other questions you may have! I’m an open book. Please feel free to comment here or send me an email: jenny@lungsnroses.blog

I look forward to chatting with you and doing more of something I am incredibly passionate about — spreading CF awareness!