I’ve seen the following scenario play out more than a few times:
Someone posts a picture of themselves enjoying drinks with friends, and inevitably someone else comments that it’s not okay for people with CF to drink alcohol. Let’s unpack that a little bit, shall we?
Sure, there are concerns about excessive alcohol consumption but that goes…[Read more]
I’ve been on Trikafta for just over two months now, and I feel like it’s been a bit of a disappointment when I’ve said that my day-to-day life hasn’t changed that much. This drug is supposed to be “life changing” after all.
Well, yesterday we went sledding and at one point, my nephew was waiting for me at the top of the hill so we could sled…[Read more]
Let’s face it — the world of dating can be a scary place for anyone! For those of us with CF, I feel like we have some additional challenges. From coughing attacks and taking enzymes on dates, to talking about life expectancy and the uncertain future, CF adds a level of awkwardness and somber conversations that aren’t typically part of dating for…[Read more]
I grew up in a time when manual CPT was the gold standard of airway clearance for people with CF. My parents would “pound” three kids (my sisters and I) multiple times a day — their forearms must have been ripped!
I got my first Vest when I was 13(ish) years old and it has been my go-to for airway clearance ever since. I also like to throw…[Read more]
“Warrior” is a word used frequently in the CF community and chronic illness community at large. And when I look at the individuals and families fighting this disease, warrior seems to be a very fitting term. The battles fought against this disease are strenuous, harrowing and all to often, entirely unfair.
But even though I fight many of…[Read more]
The other day, on the phone, someone asked if my mama was home. Not the head of the household, not my mother, my “mama.” As if she were talking to a child.
This is not the first time something like this has happened.
It happens in real life, too. Although it’s happening less and less now that I’ve earned some grey hair and my face is…[Read more]
On Instagram, I’ve started a series called Real Talk Tuesday where we delve into the parts of CF (and life in general) that are sometimes difficult to talk about. Join the conversation on Instagram or here in the forum.
𝐑𝐄𝐀𝐋 𝐓𝐀𝐋𝐊 𝐓𝐔𝐄𝐒𝐃𝐀𝐘: 𝐔𝐍𝐒𝐎𝐋𝐈𝐂𝐈𝐓𝐄𝐃 𝐀𝐃𝐕𝐈𝐂𝐄
“Try CBD oil. Stop taking those toxic medications. Push yourself a li…[Read more]
In 2013, someone approached me in clinic and asked if I wanted to participate in a clinical trial. I didn’t have a clue what I was getting into, but the appointment schedule wasn’t too rigorous and I didn’t have much else going on at the time, so I agreed.
The first trial was very short-term, but it led to other amazing opportunities. I was…[Read more]
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