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Day 30 of 31 Days of CF
Topic: CF Made Me a Better Man

“There have been some serious highs and lows the past eight years of being together, and the bond we have forged is intangible.” Ric Sherman 

In this piece @ric_sherman discusses dating, marriage, and having a child with the love of his life, Mandie, who happens to have CF. Read the full story here or here.

This question is for partners of people with CF: when you learned of your significant other’s disease, what were your thoughts, concerns, fears, or questions? How have those changed throughout your relationship? 

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I have a symptom right now that I hate. Loathe, even. Because a disc in my upper back is having major issues, and steroids and PT are yet to help (waiting on a surgical appointment and new test results to learn best plan of action), I am having a hard time doing what I love most:  writing.

But really, truly, so. Every time I spend a chunk of time doing my actual job- as well as replying to doctor emails since I can’t call, communicating with family, and onward- my shoulders start to go completely numb, the pain of the pinched nerve gets far worse, and my hands start to work less and less.

Last weekend, I danced for 5 hours on Saturday and 7 hours on Sunday, and I still had less pain and issues than I do from a full day of computer work. It’s baffling to me. (But I guess we don’t look down as much when we are dancing?) Anyways, it is really cramping my style. My life. My ability to work. I feel like I’m avoiding my computer every chance I can get, and typing on my phone isn’t much better since the disc is messing with my hands. I keep wanting to say: “Who even am I?”

Writing is what I do (literally) for catharsis… as a living… to communicate. And so is dance. And both are deeply hindered by yet another disc occurrence in such a short amount of time. 

So, even though it might seem like this is just a post to complain about what’s going on… it’s actually meant to ask the following:

What is a part of your body that stops you in your tracks, when having symptoms? 

Is it headaches from sinus surgeries? Are lung infections the thing that can’t “mind over matter”? Is it pancreatic pain (ooh, I feel that one too) or liver or beyond? Is it something unrelated to CF all together- like a time you broke your ankle or hurt our wrist? 

If there was one body part you avoid ever being hurt again… What would it be and why? 

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Day 29 of 31 Days of CF
Topic: Creating a Lifetime Bond with My Dance Instructor

“The second her students walk in the door, you’d never realize she spent the night doubled over because of her gastrointestinal issues or hacking up a lung. For a while, it felt like knowing two people: one that could dance with me in the studio forever, and one that was in and out of the hospital, constantly fighting for her life.” — Samantha Barrett

Read the full piece from  @_sambarrett_  on Instagram here, or on CFNewsToday.com here.

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Day 28 of 31 Days of CF
Topic: Lessons From a Best Friend

“As a friend, you’re gonna see bloody discharges of various colors and textures, so buckle up. You may get to play dress-up, but it’s not with Barbies. It’s for wounds and surgical incision recoveries. And the most important and hardest part is the psychology of it all.” — Jonathan Wyman

As you can see in this picture, the dear friend @appalachian_mountain_goats writes about is our own Bailey Anne Vincent. Jonathan shared so much about their friendship that Bailey shared more of his words in a column.

You can read the full version of this story (Bailey’s column) here, and the condensed version here or here.

Do you have a “Jonathan” in your life? Who is your person: the one who just “gets it” and has your back under any circumstances?

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Day 27 of 31 Days of CF
Topic: Perspective From a Fellow Rare Disease Patient

“Despite similar treatments, meds, and protocols, the CF community collectively shares a narrative, a story that is not mine. As a friend and rare disease patient, I hope to do what I can to lift up my CF friends and amplify their stories. I hope to share their highs, lows, and everything in between.” — Bonnie Ong

Read the full story from  @genetically.clumsy on Instagram here or at CFNewsToday.com here.

The solidarity across rare disease communities online has been something I cherish. Are you involved with or have friends in other rare disease communities?

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One of my dancers just started Doxycycline (for a skin condition) and the two of us have been talking about symptoms. The first time she tried it – at a much higher dose- it made her super, super sick, and she had to go off of the medication all together.

I of course gave her all the usual tips (which she definitely didn’t need me womansplaining to her but I couldn’t help myself): “Never take it on an empty stomach…. make sure you’re drinking more water than normal…. start off with a smaller dose than recommended and work your way up”. After awhile and with a smaller dose, she adjusted and has been doing okay. But it got me thinking…

What is your favorite antibiotic?

Yes, weird question… but is it for us? Not really (haha). Most of us know our “drug of choice” for kicking bugs and mold and infection, as well as the ones that we hate.

I am anaphylactic levels of allergic to rocephin (found that out the hard way), but tolerate IV Bactrim really well. I feel like Bactrim is very often my clinic’s drug of choice with me, but the oral version really messes up my stomach, and is not a fun ride.

What about you?

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Several times throughout CF Awareness Month, I put an open question box in my Instagram stories and the question I was asked most frequently — the question I’m always asked most frequently — was about my pregnancy and CF. I thought I’d share my response here in case it’s helpful or interesting to anyone.

My pregnancy was, in a word, wonderful. I truly loved it. My now ex-husband and I had spent 3 years trying to conceive and once it finally happened, I was ecstatic! From the get-go, I was considered high-risk and began having some complications (not necessarily CF related) in my first trimester that persisted through my third trimester.

Near the end of my pregnancy, I wasn’t feeling well and can now look back and realize I was having a CF exacerbation. But at the time, I truly didn’t know that. I’d been so healthy, had never experienced and adult exacerbation, and naively thought all my symptoms were pregnancy related.

I delivered a strong, healthy baby girl at 41 weeks. It was one of the most powerful and defining moments of my entire life. But as magical as that day was, that’s when things got hard.

I wasn’t prepared for the toll motherhood would take on my health and body. I was suddenly spending all my time taking care of a newborn. There weren’t enough hours in the day to care for her and myself the way I needed to be. I was also working full-time prior to her birth and returned to work when she was just 6 weeks old. It was all too much for my body. I became incredibly sick when she was 3 months old.

For the next several years, I was in and out of the hospital a LOT! It was a vicious cycle of getting sick, going to the hospital, immediately returning to work, getting sick again, and so on. It truly took 4 or more years for me to finally get back on my feet after my daughter was born. Again, pregnancy wasn’t the hard part; the demands of motherhood were so much more than I’d imagined.

Two things helped:
1) Being able to stop working and dedicate that time to my health instead.
2) Orkambi – I was in the clinical trial and during this time, my health finally started to stabilize.

Being a mom is my absolute favorite thing in this world! The trials and challenges have been 100% worth it! But I’d spent so much time worrying about CF and pregnancy, I hadn’t made sure my life circumstances after having a child would be conducive to maintaining my health. A strong support network, a solid routine at home, and time to dedicate to my health are all things I wish I’d had at the time.

If you are a mother with CF, what has your experience been? How was your health affected by pregnancy or motherhood? What piece of advice do you have for those considering having children? 

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Day 26 of 31 Days of CF
Topic: A Grandmother’s Love Is Boundless

“When Rilyn was almost three weeks old, we were informed of her cystic fibrosis diagnosis. We were shocked, and I can honestly say that we reeled for about a week. How could she have CF? There is no CF in our family. What would this mean for our beautiful girl?” — Allison Steeves

This story of a grandmother’s love is incredibly touching (and it’s a perspective that I rarely see shared in our community). Read the full piece here or here.

Do we have any grandparents of children with CF on the forum? If that’s YOU, let us know!