Virtually Very Cool Conferences

By: Mark Levine
One of the things I love about the CF Roundtable is how it brings the CF community together and is a forum for sharing stories. Stories, after all, are what life is about. So when I heard about CF virtual conferences, I had to learn more.
This past fall I attended my first BreathCon, a virtual conference for CF Adults organized by the the CF Foundation and a lot of volunteers. About two weeks ago, I participated in another virtual conference, a smaller one labeled a Mini-Con, which had the theme of Sexual and Reproductive Health. Yes, it was as interesting as it sounded like it should have been.
As a step-father of two, I was asked to facilitate a discussion on parenting. There were a lot of stories as well as some amazing tips and tricks that are wonderful to hear live. All of the conferences have a theme and they start off with a keynote address followed by break-out sessions (group discussions) with varying topics related to the theme. When I first signed up for one of these events, I had no idea how a virtual break out session would work but I have to confess… they are really cool.
The platform, or software, that is used is called BlueJeans and it allows people in a “room” to see and talk to each other using their computer or cell phone camera and microphone. Picture a Brady Bunch style screen layout and you get the idea.
Turns out that people with CF are pretty open about pretty much everything. There is a lot to be learned from others with CF and it is not only comforting to chat with people going through the same thing you are but also refreshing to hear a different perspective. I recommend getting on the mailing list for future conferences. The next one is scheduled for June.
Sign up by going to www.cff.org/virtualeventsYou will be happy you did. Until then, keep on creating those stories. I will see you online.
Mark Levine, 48, lives in Michigan with his wife Joelle and shared dog BamBam. Mark has two step-children, 23 and 21. He is on the board of and the subscription manager for the CF Roundtable.

 

 

 

How One Conversation Led Me to Being More Intentional About My Life

By: Ella Balasa

Would I ever live long enough to fall in love? Would I be able to graduate college? Would I be remembered for making some kind of impact on the world before I was gone? Would I get to travel to destinations where the breaking waves crashed against a rocky shore and the sea mist sprayed as I breathed deeply, and beside me stood …

Gabriella-Balasa-Beach-Featured-Rectangle

I’m startled back to reality. I sit in a hospital bed, surrounded by my parents in chairs on either side of me. I’m on the lumpy foam mattress, where I sit cross legged and my butt sinks at least 4 inches straining my back and adding to the pain the past few weeks — and this conversation — have caused me. My dad sits, lips pursed as normal when he listens intently. We are all listening to my doctor talk about my declining health, about my recent episode of pneumonia, and what my future may hold.

“No one knows the future,” I think, as the doctor speaks. My mind jumps again to that ocean scene, only it isn’t me standing on the shore, I’m now observing the scene from above, as if in spirit. Observing a couple embrace and I feel a strange sense of sadness, anger, and jealousy.

“It’s time to consider a lung transplant.” Those words, uttered from my pediatric CF doctor 6 years ago, made me, in an instant, think about all the joys of life I hadn’t gotten to experience yet.

Why me? That’s the first thought many people have when they can’t accept the reality of what’s happening. We try to answer unanswerable questions.

Later that summer, my parents and I followed doctors’ advice and scheduled a week-long transplant evaluation. A week of what I still consider to be grueling medical tests, even compared to other lung complications I have developed since. In the end, the transplant evaluators concluded I was not quite in the transplant window at the time. That fall, my health started to stabilize. I started my second year of college and I felt myself withdraw from the world.

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Improving Mental Health Within the CF Community

By: Ella Balasa

Having cystic fibrosis makes life sometimes stressful, sometimes lonely, sometimes painful, and oftentimes scary. But it can also make life seem more valuable, brighter, more optimistic, and more fun.

Figuring out how to balance the good and the bad, and come out from tough situations on the positive end can be challenging, especially without support from others. This includes support from family and friends who are physically there for us every day, and support from within the CF community, those who empathize in fighting this disease.

I’ve been very fortunate to have both of these kinds of support. Unfortunately, many who fight CF do it alone, without the support of many family members, friends, or spouses. Many also have yet to connect with the CF community online — either they aren’t on social media platforms or aren’t interested.

According to Cystic Fibrosis Foundation guidelines, CF patients are not to be within 6 feet of each other under any circumstances. They are encouraged to avoid being in the same vicinity at all. This is to prevent cross-infection, the transference of antibiotic-resistant bacteria between patients, which could spread more sickness around the CF population.

While this precaution is in place for our health benefit, it isn’t conducive to real-life friendships among individuals. This can create feelings of isolation, sadness, and the belief that no one understands, and combined with a potential lack of physical support from friends and family, it can be a recipe for serious mental health issues.

Everyone needs physical relationships. We all need someone’s embrace when we’re hurting. In a CF perspective, the hurt can be physical (such as lung pains or fevers) or mental (when we’ve hit a brick wall or the optimism we have that the next day will be better has faded).

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Matter Ep. 23 – How Are You Feeling?

Today’s topic comes from a listener whose boyfriend has cystic fibrosis and she wants Julia and I to discuss the “How are you feeling?” question.

“How are you feeling?” That’s a question we with chronic illness hear quite Continue reading Matter Ep. 23 – How Are You Feeling?

Starting College with CF

By Tabitha Caldwell

My name is Tabitha Caldwell, I am eighteen years old and live in Austin, Texas. This fall, I’ll be moving to Utah to start college at Brigham Young University. I’ll be making many changes and experiencing many things for the first time, just like most ingoing college students. Not living with my parents, buying and making all Continue reading Starting College with CF

OWN IT: Audio Podcast Episode 6 – College Roommates Part 2

This podcast will finish the discussion started last week about a person with CF living alongside roommates in college. You will again meet David O’Kane, Carmen Gatta, Vince Love and Matt Flynn, and hear us talk about the support Continue reading OWN IT: Audio Podcast Episode 6 – College Roommates Part 2

Having CF is the Best Thing that Ever Happened to Me

Having CF is difficult.  There is no denying that.  Some days it is hell, other days it is fairly easy given the circumstances.  But with all the bad that has happened, having CF is the best thing that ever happened to me.

Continue reading Having CF is the Best Thing that Ever Happened to Me

Artist with Cystic Fibrosis Loses Sight But Not Vision in CAN’T SEE SH*T Documentary

http://www.broadwayworld.com/bwwtv/article/Artist-with-Cystic-Fibrosis-Loses-Sight-But-Not-Vision-in-CANT-SEE-SHT-Documentary-20160426#

Detroit, MI — “Can’t See Sh*t” is a local film documentary about artist and singer, Brendan Patrick.
Brendan has Cystic Fibrosis which has slowly been deteriorating his physical body- but not his art, integrity or humanity. The Continue reading Artist with Cystic Fibrosis Loses Sight But Not Vision in CAN’T SEE SH*T Documentary

15 Reasons I Never Hide My Cystic Fibrosis––Gunnar Esiason

Cystic fibrosis is a major emotional burden; there is no disputing that. I think sometimes what comes of the emotional stress is a hesitancy for people to really open up about CF. Too often do I talk Continue reading 15 Reasons I Never Hide My Cystic Fibrosis––Gunnar Esiason