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Fabric, pins, and sneezes

Sewing and crafting has always been my favorite thing to do to. I get to be creative when I am nebulizng. When I am need of a mental break it gives me something else to focus on other than exercise and therapy. In the first picture I am setting up my Machine to finish a leather corset.
 

Between The Salty Lines

Growing up I did not know anyone I could relate to that had Cystic Fibrosis. I finally connected with a guy older than me in my later teenage years who went to the same pulmonologist. As I went through so much I can remember thinking how great it would be if I could find someone to talk to that could understand. By the time I was 20 years old I was needing a double lung transplant.

Very Much Alive

My name is Laura Cynova, I am 29 years old and I was diagnosed with Cystic Fibrosis when I was almost three years old.  Today I have been married for almost ten years and I have two beautiful children and I live every day making sure that Cystic Fibrosis doesn't run me or my life.  I have been a recipient of the Cystic Fibrosis Lifestyle Foundation grants several times now since 2019 and I a

What I Wish People Knew About Cystic Fibrosis

What I wish people knew about cystic fibrosis and life after transplant. 

Practicing Self-Care and Self Compassion (Part 1)

Self-Care and Self Compassion (Part 1)

Hi all! My name is Meg Hall and I am a Licensed Clinical Social Worker (LCSW) at the Maine Medical Partners Pediatric Specialty Care- Pulmonary 

How CF Social Workers Help

Unexpected Medical Surprises

I was diagnosed with cystic fibrosis in 1992, I was two and a half. Before this, I was constantly sick, a runny nose, a thick cough, greasy stools, the usual suspects. Doctors concluded that I suffered from pneumonia from the day I was born, so by four years old my right lung was just a sac filled with infection. I ended up having my right upper lobe of my lung taken out. It wasn’t completely unexpected, because I had been so sick, but for new parents, it was a bit unexpected for parents expecting a healthy child. 

Rare Disease Day 2022

I have been an advocate for a rare disease called cystic fibrosis for most of my life. I have been fundraising and raising awareness since I was in a stroller doing walkathons. I won a contest where I designed a nascar when I was 10 years old through a non-profit and was able to share my journey with CF all over the United States. As I grew older, I started to take on the advocate role as I witnessed the demons of a rare disease.

Re-post: Lessons Outside the Classroom

From Kindergarten, we are taught all the basic subjects: math, science, reading, writing… These prepare us for our careers. Some for basic life skills. Cooking in Home Economics (is that still a class?!) Working out our bodies in physical education. How to balance a checkbook in Accounting (does anyone else do that anymore?) But where are we taught how to deal with the heavy matters of life? What class can we take on that?

Bye 2021 Hello 2022

Since the beginning of the pandemic it has been hard to make goals and stick with them. I know I’m not the only one struggling with this. Every January 1st we all have aspirations and goals for the new year. Some stick to them for the first few weeks to a few months and then fade off.

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