CF Patients Improve Lung Function with Elexacaftor Combo, Data ShowJan 02, 2030 04:44 am | Cystic Fibrosis News Moderator
Replies: 0
Adding elexacaftor to tezacaftor and ivacaftor leads to marked improvements in lung function and quality of life in people with cystic fibrosis, data show. Read more about it here.
What do you think of this news? |
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Myths and Memories: Sickness NostalgiaOct 15, 2020 03:56 am | Bailey Vincent
Replies: 1
Since family dynamics have been on my mind this week, and a fair bit of nostalgia, I was curious:
What was your earliest example of “sickness”?
Did you have a particular role model as a child? Do you remember seeing it on TV, or hearing someone in your family talk about someone who was ill? How did they talk about it and how did it impact you, if at all?
I know that my last remaining grandmother was ill with cancer when I was a kid, but I barely remember it, and thus don’t remember how it was handled or approached. I know that her mythology in my family was of someone who refused a wheelchair to walk (even when she needed one) and never complained and always hid the worst from those she loved.
In a way, that has really influenced me throughout the years, and perhaps made long-term illness a bit stickier psychologically. I want to be brave and mysterious and stoic and strong, and (though honestly a great many doctors have called me “stoic” over the yers) I am yet to really live up to that.
What about you? |
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Pets: Who Are They?Oct 15, 2020 01:33 am | Bailey Vincent
Replies: 4
I’m sure we have posted about this before, but today I could not help myself…
What pets do you have and what are their names and personality quirks?
I ask this because- while recovering from and posting about surgery all dang week- my animals have brought me so much joy (as they always do). I was once told to give up my cat years ago (by a Pulma) and I did not, because the psychological happiness seems well worth the limited risk of allergy. Since then, my lungs have improved from a myriad of things, but I’ve continued to have animals.
Do you ever worry about the negative impact of pets on your health? Do you feel the positives outweigh the negatives?
I obviously do, but I totally understand if someone doesn’t. For example, I don’t want a big dog at the moment, because I’ve had so many surgeries and have so many vulnerable stomas and sore spots that I just don’t want to risk getting knocked over or jumped on (on a frequent basis).
My current zoo includes Odile, our calico cat (named after the black swan in Swan Lake), my deaf kitten Baryshnikov (named after the iconic dancer, of course), our very large and loving bunny, Jete (named after the ballet step/word in French), our two fish, and my many hermit crabs (all with ballet names as well). All of our large pets- the cats and bunny (who is larger than the cats)- are rescues. Our bunny is free-roam, which means she is out and about in the house all day long, and rules the roost for the most part.
What about you? |
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Parents, Memories, MoreOct 14, 2020 08:06 am | Bailey Vincent
Replies: 3
What is one of the most important things your parents ever taught you?
I’ve been thinking a lot about everything parents of CF patients do and endure, and how hard it can truly be. My parents didn’t have to knowingly “raise a child with CF” since I was a late diagnosis, but they do have to love one now, and continue to do so all the time.
If I had to distill one of the best bits of knowledge my Dad taught me throughout the years, it’s more of an attitude than an actual phrase. He is definitely a “self made” type of guy, and – despite losing his Dad at a very early age and not having the typical degrees and accreditations he’d like- he’s one of the most successful, creative and intelligent people I’ve ever met.
My Mom is full of phrases, on the other hand, and loves to say “It is what it is”, which (even when it drives me crazy) is often a way I look at things now. Pouting and pausing didn’t get me very far in our house, so I had to “suck it up and drive on” (another of her phrases).
What about you? Or, if you ARE a parent of a kid with CF, do you find yourself repeating any classics from whomever raised you? |
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Family Trees: Any Surprising Sickness?Oct 13, 2020 05:37 pm | Bailey Vincent
Replies: 2
I’ve been pondering family so far this week, and was wondering:
Has there ever been illness in your family that’s not CF?
How did it impact your family dynamic? How did you feel about it at the time?
My Dad had a really big battle with heart failure in 2017, and we nearly lost him. He was so sick after it hit, that he didn’t even know my name or recognize me when I walked into the hospital. Since his Dad had heart disease and I was in the ICU with Brugada some years before, we definitely know “heart stuff” and hearing loss is part of our familial tree too.
My Dad is deaf in one ear. My brother and eldest sister have some diminished hearing. And I, of course, am super profoundly deaf (progressively and later in life), as is my youngest daughter (mild-to-moderate/hard of hearing).
My Dad’s mother was a really brittle diabetic (Type 1), and of course cancer runs in our tree as it seems to run in all trees, but fortunately, my parents are in their mid 70s and pretty darn healthy now!
What about you? |
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Disability Employment Awareness Month: What’s Your Story?Oct 13, 2020 09:40 am | Jenny Livingston
Replies: 0
In 1988, October was declared National Disability Employment Awareness Month by the United States Congress to raise awareness of the employment needs and contributions of individuals with all types of disabilities. Many people with CF are employed, while others face health challenges that prevent them from actively working.
I got my first job at the age of 15. I worked at a fast food drive-in, followed by several other jobs in the food service industry. At the age of 20, I began working at a local credit union and truly enjoyed both the job itself and the people with whom I worked. In the nearly 7 years I was employed there, my health drastically declined. I began needing more and more time off (which was unpaid beyond my few days “sick” leave). The last year I was working, I spent a total of 12 weeks in the hospital. My small office had a difficult time covering for me during these unexpected and prolonged absences. Tensions began to rise, and near the end of my time working there, I was under the impression that I was about to be fired. Ultimately, I quit and was immediately approved for disability.
This was my first and only experience with workplace tension related to my health (I don’t even like to say it was discrimination, because for many years, my employer was very accommodating and nothing was ever blatantly discriminatory). There was definitely some resentment and hurt feelings, but I am fortunate that things worked out in the end. Being on disability ultimately made it possible for me to get far better health insurance than I ever had through my place of employment. It also allowed me to be home with my daughter, dedicating much more time to my health.
I know others who’ve faced blatant discrimination at work. Disability in the workplace is still stigmatized. Protections and accommodations aren’t always granted. On the flip side, some employers are incredibly inclusive, supportive and accommodating to those with disabilities.
What has your employment experience been? Have you ever faced workplace discrimination based on your health? What are the best and/or worst employment experiences you’ve had? |
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