Cystic Fibrosis News Today Weekly Forum Digest

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Celebrating Health, Wealth, and Loving Yourself

Jun 16, 2019 11:57 pm | Cystic Fibrosis News Moderator

Replies: 0
Hannah Buck wants you to be good to yourself! To that end, click here to read about her “kind” health resolutions for 2018.
Do you find it easy or difficult to practice kindness toward yourself? What can you celebrate about yourself today?

I Struggle to Let People In

Jun 16, 2019 11:49 pm | Cystic Fibrosis News Moderator

Replies: 0
Click here to read Reid D’Amico thoughts on the struggle dto let love ones support him as he lives with the unpredictability of cystic fibrosis.
Do you struggle to let others help you or do you accept help easily?

I’m Not Crazy: A Post-Diagnosis Poem

Jun 16, 2019 11:47 pm | Cystic Fibrosis News Moderator

Replies: 0
Click here to read a poem by Hannah Buck, written two years ago in the midst of post-diagnosis anxiety and depression and titled “I’m Not Crazy”.
What do you think of Hannah’s poem? Do you use writing to express yourself?

WCW: Trina

Jun 12, 2019 09:33 am | Luisa Palazola

Replies: 0
For full feature, click here!
We’re excited to share Trina’s story with CF. @trina_laine is 32 years old and is from Vancouver. Here are the things she finds most important to her story! ⁣⠀
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I was diagnosed with CF at 6 months old in 1987. My life expectancy was 12 and I spent many of my young years in the hospital going through treatments to try and keep infections at bay. My teens were a dark time. I found myself depressed and obsessed with death. I had been put on anti-depressants/ anxiety meds in my early 20s after severe trauma, and only until 4 years ago was I able to wean off of them. I experimented with drinking and drugs, which only caused more anxiety and sadness.⁣⠀
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Entering my 30s was a very scary time, after all, I hadn’t planned to be around this long.⁣⠀
I began to change and grow, decided to kick the drinking and pick up yoga. I cut out the darkness with my bare hands and started seeking happiness, started healing instead of numbing, and surrounding myself with happy & positive people, and spending more time on my sweet little fur baby, Betty. I started talking about my illness to people. Transforming it from a weakness to a strength. I found a really amazing group of CF peers, who have helped me in every way. Even having an amazing family and friends doesn’t compare to having a group of people who can truly relate to me.⁣⠀
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2 years ago I met Mike, we started out as just friends, but during a very scary hospital stay we ended up becoming more. He loved me at my absolute lowest, and has never left my side since. We have climbed mountains in Thailand and hiked through the California with much difficulty, but also much joy. After a rough stint of constant hospitalizations last summer, I was asked to be a part of the new trial in September 2018, and everything changed after that. It’s better than anything I could have ever dreamed of. Everything changed after that.⁣⠀
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I want to send HOPE to all the CFers, and the people who love them, parents, friends, loved ones…⁣⠀
Hang on, stay strong, have hope.⁣⠀
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EVERYTHING is about to change for us.⁣⠀

What I've learned about my CF

Jun 12, 2019 06:56 am | Luisa Palazola

Replies: 0
CF has made me confront my own mortality. CF has made me confront mortality of those I love.
CF has shown me depths of my insecurities and the ruthlessness of other people’s cruelty.
My body has given me reason to hate it. With each ounce of blood that seeps from my lungs and into a porcelain white sink.
My body has given me reason to not trust the place I call home
My lungs have taught me what fear is
My mind has become so restless by disappointment, hate, and fear cultivated by my body and lungs. That, it too, wanes in sickness.
And sometimes, my mind’s whirlwind of emotions fail my body
It’s a curious experience. But, with a little faith, you dare to experience:
Living and being present in your moment.
To laugh from your belly and to kiss the soul of life.
To find awe in your self and the feats and barriers you’ve crossed. No matter how small they seem.
To be proud of &
to be gentle with
the body and the mind that carry you day in and out.
the body that gives you the opportunity to simply
experience a genuine hug. to say I love you and to carry love out, and let it come within
to feel the immensity of this Universe.
and, simply to be
cystic fibrosis, to me, is existing

CF & Fertility

Jun 11, 2019 04:24 pm | Tré LaRosa

Replies: 0
I remember being really upset when I learned that most men with CF are infertile. Men, do you remember the day you found out? How did you feel? Have you thought any more about having kids since then? Do you plan on having kids?

The day you found out about the CF life expectancy

Jun 11, 2019 04:23 pm | Tré LaRosa

Replies: 0
One of the worst days of my life was discovering that CF was a life-shortening disease. I remember being heartbroken for weeks over it.
Do you remember that day? How did you discover it? How did you feel afterward?
This is a safe place to talk about an obviously devastating day.

Married 30yr old danish guy

Jun 11, 2019 09:58 am | Rasmus Møller Bohn

Replies: 0
Hi there.
I’m Rasmus, 30 years old and born and raised in Denmark.
I have a sister with CF – 34 years old an two kids.
I have another siter without CF 45 years old
I never met my last sister, Linette, which died of CF in age of 7 – in the 80’ies.
My recent “project” was microdosing magic mushrooms. I dont think the doctors condone that

And… – wow! I’ve stopped for now, but that helped me a lot in understanding my place and role in this very awesome life.
My next project in life is psychologist – never had any success with that.
And then making 100 babies with my wife, if possible

– going through TESA and all that crap, jeeezz..
I hope you guys a good.