Cystic Fibrosis News Today Weekly Forum Digest

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Let’s Talk Mental Health: What Is Stressing You Out Today?

Dec 09, 2019 06:11 am | Bailey Vincent

Replies: 0
Question: How is your mental health today?
Yesterday I wrote a stream of consciousness rant about how sad and panicky I was feeling about finances, and the lack of time to balance both treatments and work. I already knew that Monday was going to kick my butt.
The problem is: I didn’t even live up to the challenge. My current sinus and upper respiratory infections ramped up so heavily last night, that I canceled my very important doctor appointment this morning because I didn’t feel up to driving the four hours (total) to get there, early in the morning. I will be driving to work late tonight and doing as much of my writing work from home as I can by day, but I’ve basically done only 35% of what was needed on a 100% day.
And the problem is… when things don’t get done, they still have to get done. They don’t just go away. I can’t just say, “Well, you’re dealing with a really painful infection right now and can’t sleep and your GI tract is bleeding and…..”
Sometimes, life doesn’t allot us that “and”. And dealing with that pressure can feel suffocating (at least for me).
So what do YOU do on weeks like this?
How do you balance your mental health amid all of the stress?

Have You Ever Lost Yourself To Your Sickness Identity?

Dec 09, 2019 04:44 am | Bailey Vincent

Replies: 1
QUESTION: Have you ever let sickness take over your personality?
I have. After I first got diagnosed and finally had some sort of answers, I felt like going hard as an advocate was super important. I was super stressed out by symptoms at the time, and all the unknowns. I did the same thing when I was embracing my Deafness and trying to find a community who would “get me”.
I operated like there was light at the end of the tunnel. As if there’s a solution for every problem. A “fix”. But, as most of you know, there rarely is a perfect end to each and every symptom, and eventually (at least in my case) we settle into this weird treading-water effect instead. Has anyone else gone through this?
Do you feel it’s a positive or something we “grow out of” instead?

Partners can help ease the burden of CF in simple ways

Dec 09, 2019 04:01 am | Jenny Livingston

Replies: 0

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. So many of the daily tasks that are necessary to stay healthy are tedious and mundane but, for me, this particular task is the WORST. I know it seems like a small thing, but this sight is one that always makes me swoon.
Can you relate? Is there anything special your partner does to ease the day-to-day burden of CF?

Fear of Abandonment Has Driven My Life into the Ground

Dec 09, 2019 01:32 am | Cystic Fibrosis News Moderator

Replies: 0
Recently, columnist Brad Dell realized his subconscious fear of abandonment, rooted in CF-related experiences, has planted unhealthy ideas of self-esteem. Click here to read more from Brad.
Have you ever been through something like this?

Community Member Feature: Moms with Cystic Fibrosis

Dec 06, 2019 09:03 am | Jenny Livingston

Replies: 0
This week’s member feature is a group rather than one individual. Moms with Cystic Fibrosis was founded by Morgan Polen, a 29-year-old mother with CF. Morgan says she created the group because she wished she had something like it when she was navigating pregnancy and the beginning of her motherhood journey. Her vision for the group is to “continue providing a supportive community for prospective and current mothers with CF. Good camaraderie, face-to-face interactions with relative professionals, and a collection of resources for the group: these things are my focus.”
The group has hosted a variety of guest speakers and workshops on topics such as anxiety and depression, sleep, sex therapy, PTSD, yoga and mindfulness, and more!
Group member Kaitlin Standley says, “I’ve never felt so much love and support from a group of women who “just get it.” This group has taught me so much and I’ve actually learned a lot about myself! Yay, for self growth! And although we’ve never met in person, I feel like I’ve gained lifelong friendships from being here.”
“Being a mom is hard and adding CF on top of that makes it even harder. This group is full of supportive and understanding women who understand mom life with CF,” said Jess Bianchi.
The Moms with Cystic Fibrosis group exists on Facebook and Instagram.
This is certainly not the first or only subgroup within the larger CF community. Groups have been created for spouses of CF partners, parents of children with CF, “pet parents” with CF, those who enjoy gaming, and more. Connecting with the community, especially those who share interests or are on a similar life journey, can be so helpful and encouraging!
Are there specific groups that you find helpful? If you were to create a subgroup within the CF community, what would the focus be? We’d love to hear about your ideas and experiences in the comments!

P. Aeruginosa’s Stress Response Helps It Evade Antibiotics, Study Says

Dec 06, 2019 02:27 am | Cystic Fibrosis News Moderator

Replies: 0

Researchers have discovered a mechanism that allows P. aeruginosa, a bacteria that causes lung infections in cystic fibrosis patients, to evade antibiotics. Learn more about it.
What do you think of this news?

CF: A game of numbers

Dec 05, 2019 03:25 pm | Jenny Livingston

Replies: 0

Let’s face it: CF is a total numbers game. Weight, lung function, blood sugar and vitamin levels, bone density, number of treatments per day, minutes spent working out, insurance premiums, copays, and the list goes on…⁣⁣
⁣⁣
It seems like a number can be attached to almost every facet of CF, but I’m guessing the number that weighs most heavily on many of our minds is our FEV1. ⁣⁣There can be a lot of pressure (both self-imposed and from the people who love us) to perform well and blow high numbers. When those numbers drop unexpectedly or decline despite your best efforts to keep them up, it can be devastating.
But the older I get, the more I’ve realized how much of a disparity exists between what my numbers are and how I’m actually feeling. While numbers do symbolize something very important, they’re really just one piece of the puzzle.⁣⁣ I’d much rather focus on how I’m feeling and how well I’m functioning in day-to-day life.
How do numbers, especially FEV1, affect your mindset? Do you find that you’re numbers are reflective of how you’re actually feeling? What are your thoughts on all this?