Very insightful!

I don’t know what People imagine. My last hospital stay in 2023 was a terrible experience. I also had pleasant stays. I guess it is in the mind for most part. Last time I had a terribly agitated and angry, anxious and beligerent mind. The good stays I was at peace with myself, the self. In that place, there is no monotony, no waiting,…

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💙

November is National Caregiver Awareness Month. Before it starts — what does your CF caregiver mean to you?

Thanks to shows like Grey’s Anatomy, most people assume the hospital is like what they see on their screens, yet being hospitalized with CF can be the opposite. 

For me, the worst part about the hospital is the boring, sterile monotony. Some people might be surprised because they imagine a fast-paced drama. It can be like that, but most of…

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I’m sorry to hear that, Jeanette!

Too am steiroid dependent and have been for decade. I hope they are helping you at least a bit! It is a hard drug!

My rant is that due to steroids for CF and asthma I now have adrenal insufficiency and this sucks! So I am now steroid dependent, have to navigate sick day rules every time I get a chest infection and anything else stress wise, had adrenal crises which are scary, give me simple CF any day!

An inherent fact about CF is that those with cystic fibrosis can’t be within 6 feet of each other for fear of sharing dangerous bacteria. This limitation seems cosmically unfair. The people who understand our trials and tribulations the most cannot be within a certain radius of us.

However, thanks to the internet and forums like this, we can…

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At some point in our lives with CF, we rely on our friends, family, and neighbors to help take care of us. They help take us to and from appointments, handle insurance, and provide life-saving care.

My entire life, my mom has been my main and best caregiver. She is understanding, attentive, dedicated, and loving. She makes sure I get the care…

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Since CF is an orphan disease, we haven’t seen a ton of representation in the media, and when we do, the CF experience seems to be tokenized, shortened, and used just to make people sob in theaters. 

I have only seen two acceptable CF characters on television, and that’s on Red Band Society and Bates Motel. In these shows, the…

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I agree, it is a double-edged sword! I have been on it for 10 years straight, and the damage it’s done to my other organs and bones is wild. But I’m grateful for the role it plays in my health care routine. Sounds like you have a similar experience :).

Prednisone is a double edged sword. I’ve had to be on it at various times both for my CF and my rheumatoid arthristis. It makes me feel so much better but the long term effects on the body are nasty. A Rheumatologist told me it ages your organs. At 66 I feel that. Nevertheless I’m taking it right now and I know in the future I will again.

Many of the meds we take to help manage our CF care put us through the wringer. But the heavyweight champ seems to be Prednisone. Prednisone is a steroid used to reduce inflammation and mitigate symptoms, but it also has quite the reputation for moon face, weight gain, shakiness, aggression, mood swings, osteoporosis, and more. Like, need I…

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CF is a complex disease that is scary, lethal, and progressive. It’s also multifaceted because it affects everyone differently. As a cheat sheet, anywhere there is mucus in the body, CF is there, lurking in the shadows while also basking in the sun.

Personally, I wish people understood the constant anxiety I feel being in my own body. I do…

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Self-care can be done in many different ways, especially in the daily life of someone with CF. Whether it’s adhering to our strict medication regimens, watching a comfort show, or exercising, self-care is very important. 

Personally, I enjoy watching true crime documentaries to unwind, doing face masks, and taking all my pills on time. I…

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Making small daily behavioral changes can help you avoid infections while living with CF. Washing your hands for 60 seconds, coughing into your elbow, and wearing a mask in the clinic are behaviors you are familiar with.

My personal hacks include using hand sanitizer after every visit to a store or restaurant. Using an alcohol wipe to wipe…

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People love to use the words “hero” and “warrior” when complimenting those with CF on their triumphs and hardships. However, sometimes the “hero-ification” or applying a superhuman quality to a human can be upsetting.

I personally don’t have a problem with someone complimenting me with those words. But I do get annoyed because I would trade…

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There have been countless studies, such as https://pmc.ncbi.nlm.nih.gov/articles/PMC7590463/, that show there can be benefits to Cannabis use in CF patients. From nausea to anxiety, Cannabis has helped many people, but it isn’t for everyone. 

Personally, as someone with stomach issues, anxiety, and constant nausea, I think cannabis would be…

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CF scars are bodies, in ways we do not consent to. However, a lot of us with CF get disease-related tattoos to show off our prowess and strength.

I have a rose tattoo that I got after my second transplant. It holds such significance to me because I finally got to choose a permanent change to my body. It was like a trauma release. Even though…

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Love this! Thank you for sharing.

As the mom of a daughter with severe cystic fibrosis, this song by a French-Canadian band means so much to me. It was written by one of the band members, who is also the father of a daughter with cystic fibrosis. I took the liberty of translating the lyrics into English 🩷 https://www.youtube.com/watch?v=uWDz5zEc1hs

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Despite the…

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CF is a real medical diagnosis that requires expert care. However, alternative medicine also has some benefits. With Western medicine alone, we often focus on the body rather than the whole person. 

There is never a day I don’t religiously take my pills, do my treatments, and make a doctor appointment. But my hospital also offers…

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