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Jessie Madrigal Fletcher started the topic Day 26 of #31DaysOfCF: My Challenges Have Helped Me to Be a Better Mother in the forum 31 Days of CF 2022 1 day, 4 hours ago

Katie Lockwood’ grew up surrounded by love. Having said that, life with CF was challenging too. Treatments and her medicine regimen were a constant push and pull for Katie and her family.

“They say different children need different things.”

Now that Katie has become a mother, to Rose and Magnolia, she can appreciate what makes each of them u…[Read more]
Jessie Madrigal Fletcher wrote a new item 1 day, 4 hours ago

Katie Lockwood’ grew up surrounded by love. Having said that, life with CF was challenging too. Treatments and her medicine regimen were a constant push and pull for Katie and her family.

“They say different c
Paul met Debbie replied to the topic Day 25 of #31DaysOfCF: How CF Dissolved All of My Predicaments in Life in the forum 31 Days of CF 2022 1 day, 13 hours ago

This is a shortened version of a Talk titled “58 years with CF” that can be read on our website here.

For those of you who want to know even more about liberation and how to “get there”, it’s is all revealed in another Tale titled “Falling Awake” on our website here. And in some of the later tales as well.

Of course, there is no way to “get…[Read more]
Jessie Madrigal Fletcher started the topic Day 25 of #31DaysOfCF: How CF Dissolved All of My Predicaments in Life in the forum 31 Days of CF 2022 2 days, 4 hours ago

Paul Jordaans was born with CF, in 1963. He soon began concentrating on being here now. Meditation — cleaning his lungs twice a day with a nebulizer is great pranayama — taught him to be in this flow almost continuously, trying to ignore the periods of suffering when his “ego/mind” had a temporal hold over him.

“This is a peaceful way of exp…[Read more]
Jessie Madrigal Fletcher wrote a new item 2 days, 4 hours ago

Paul Jordaans was born with CF, in 1963. He soon began concentrating on being here now. Meditation — cleaning his lungs twice a day with a nebulizer is great pranayama — taught him to be in this flow almost con
Jenny Livingston replied to the topic Day 22 of #31DaysOfCF: My Service Dog, a Miracle ‘Gift From God’ in the forum 31 Days of CF 2022 2 days, 10 hours ago

While none of them are trained service animals, all of my pets are supportive and loving. Being a pet owner has always been something I enjoy deeply. Animals are such treasures!
Paul met Debbie started the topic Sunday Morning (64) Life is beyond limits in the forum 31 Days of CF 2022 2 days, 19 hours ago

In Day 23 of the 31-days-of-CF series on this forum and website, Maggie Ronayne reveals that Trikafta has removed many of the limitations that CF used to impose on her. In her own words: “The blinders have come off”. This made me think about limitations in life. Are they true or only a perception?

Life is both limited and limitless. On a firs…[Read more]
Paul met Debbie wrote a new item 2 days, 19 hours ago

In Day 23 of the 31-days-of-CF series on this forum and website, Maggie Ronayne reveals that Trikafta has removed many of the limitations that CF used to impose on her. In her own words: “The blinders have co
Jessie Madrigal Fletcher started the topic Day 24 of #31DaysOfCF: I Want to Live Fully in the forum 31 Days of CF 2022 3 days, 4 hours ago

Ashley Wilson never looked at life knowing what the “expiration date” was, as some refer to it. She has always known that no one is guaranteed a tomorrow, although medical advancements that are continuing to be made available, such as Trikafta (elexacaftor, tezacaftor, and ivacaftor), have changed her life.

Ashley believes she wouldn’t be th…[Read more]
Jessie Madrigal Fletcher wrote a new item 3 days, 4 hours ago

Ashley Wilson never looked at life knowing what the “expiration date” was, as some refer to it. She has always known that no one is guaranteed a tomorrow, although medical advancements that are continuing to be
Jenny Livingston replied to the topic Day 23 of #31DaysOfCF: Thanks to Trikafta, the Blinders in My Life Have Come Off in the forum 31 Days of CF 2022 3 days, 4 hours ago

“When you’re given limited options in life due to your chronic illness, you develop tunnel vision. But now, for me, the blinders have come off.” These words struck a chord in me. Trikafta has widened my view of life once again as more things have become possible. It is truly remarkable. As Maggie says, I hope we can keep the spirit of advocacy a…[Read more]
Paul met Debbie replied to the topic Sunday Morning (63): Surviving Dark Periods in the forum Adults With Cystic Fibrosis 3 days, 14 hours ago

It’s now a Tale on our website, with some references to sources and a beautiful picture. You can download here.
Paul met Debbie replied to the topic Day 20 of #31DaysOfCF: CF Isn’t Anything To Be Embarrassed Of in the forum 31 Days of CF 2022 3 days, 14 hours ago

What a beautiful love story! You clearly belong to eachother and we wish you all the joy in life. Perhaps you two might enjoy reading a Tale about this:

https://www.parkinsjordaans.nl/downloads/23_Intentions_A_tale_about_three_Love_Poems.pdf

I never felt the need to hide symptoms, but out of a care for privacy I didn’t expose my bodily…[Read more]
Paul met Debbie replied to the topic Day 19 of #31DaysOfCF: How I Support My Siblings in the forum 31 Days of CF 2022 3 days, 20 hours ago

What a beautiful account of sibling love!

I love my two sisters for whom they are, (not) having CF does not come into this. I don’t even think of this as support. It comes naturally from being family. They are different from eachother, so my love emanates in different ways for them, but it is from the same source.

Then again, I feel everyone and…[Read more]
Paul met Debbie replied to the topic Day 22 of #31DaysOfCF: My Service Dog, a Miracle ‘Gift From God’ in the forum 31 Days of CF 2022 3 days, 21 hours ago

Animals are our friends on this planet. They have been assisting our pour species for millions of years doing the hard work for which we are not strong enough, feeding and clothing us (alas) and being great company (yeah!). We are eternally indebted to them. Incredibly so, most Animals are very friendly and benevolent to us. We only seldomly…[Read more]
Jessie Madrigal Fletcher started the topic Day 23 of #31DaysOfCF: Thanks to Trikafta, the Blinders in My Life Have Come Off in the forum 31 Days of CF 2022 4 days, 3 hours ago

Maggie Ronayne is 26 years old and is from Southeast Michigan.

Maggie believes that having an invisible illness like cystic fibrosis is a bit of a crazy thing, because one day she’s having a great time with friends, and the next she could be in the ICU fighting for her life.

Trikafta (elexacaftor, tezacaftor, and ivacaftor) was truly a g…[Read more]
Jessie Madrigal Fletcher wrote a new item 4 days, 3 hours ago

Maggie Ronayne is 26 years old and is from Southeast Michigan.

Maggie believes that having an invisible illness like cystic fibrosis is a bit of a crazy thing, because one day she’s having a great time with f
Paul met Debbie replied to the topic Day 21 of #31DaysOfCF: How Will You Use Your Breath In This Life? in the forum 31 Days of CF 2022 4 days, 19 hours ago

Breath is the force of life. Literally and figuratively. It is even felt to be the origin of creation in almost all of the stories that are the core of the religions of mankind. The universal principle (God, Dao, Brahman, Atman, Allah, the One, Teotl, Atum) is often intuited and pictured as breathing the air of aliveness into the universe, an…[Read more]
Jenny Livingston replied to the topic Day 18 of #31DaysOfCF: One Day We Will Find a Cure for Cystic Fibrosis in the forum 31 Days of CF 2022 5 days ago

While I am fully supportive of continued research, fundraising, and discussion about finding a cure, I also think it is incredibly important to talk about how so many people with CF are living beautiful, fulling, passionate lives right now. For many of us, that is in great part due to the dedication of those who came before us and “the generosity…[Read more]
Jessie Madrigal Fletcher started the topic Day 22 of #31DaysOfCF: My Service Dog, a Miracle ‘Gift From God’ in the forum 31 Days of CF 2022 5 days, 2 hours ago

Elizabeth Knight lives with cystic fibrosis and seizures. Although she’s always had CF, she began having seizures after a car accident and subsequent head injury in January 2019. No amount of medications or tests helped.

Eventually an idea popped into Elizabeth’s head. She did a ton of research and talked about it with her CF doctor. He and…[Read more]
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