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It’s awesome you’re able to take a modulator, even with a rare mutation. Hopefully there are quicker hospital stays for you along the horizon

Hemoptysis.  Brought on by a lung  infection that just won’t die with oral antibiotics.  Usually, the hemoptysis is of a magnatude that I can’t put it off any longer.  At that point I’m told to go the ER and get inprocessed so  they can monitor and, ultimately, insert a PIIC line for IV antibiotics.  It is usually a 4 day stay in the hospi…[Read more]

What book would you recommend to start?!

We must always realize the truth you said, we cannot have good days without some bad.

The best! Go Melissa!

Vacation, especially in Hawaii, is always a win!

It’s a double edged sword, but it’s a sacrifice we must make!

Anything and everything Colleen Hoover.  She has a wonderful way of detailing and writing her characters in ways that make them relatable and endearing – so much so that I temporarily forget that they’re just characters in stories (and not real people)!

Unfortunately, most of my hospital stays are with one of my loved ones, playing my part as a caretaker and doing all that I can to ensure that they are receiving the highest quality of care possible.  However, I take all the good days with the bad and would move mountains for any of my loved ones… and remember, there are no good days without…[Read more]

I apologize… but I truly cannot choose a favorite sports memory because I am in no way a sports fan – but I am a passionate competitive cooking show fan!  One of my favorite moments from a competitive cooking show has to be when an underdog contestant, who seems in general to be a very likable and retable person (big fan here!) won Top Chef…[Read more]

Hi Jenny – it’s been a pleasure reading and connecting.  I wish you all the best and thank you so much for your thought-provoking discussions!

While I cannot pinpoint a monthly win in particular, I can say I try to take time each day to practice gratitude and remember all of the wonderful things in my life that I have to be thankful for.  I also just recently returned from a great and eye-opening trip in Hawaii… if that can be considered a win!

When dealing with feelings of isolation, I usually try to rewire my thinking and appreciate the quiet time to sort through my feelings, headspace, and attempt to keep busy with whatever tasks I can.  However, when it becomes too lonely or difficult to endure, I talk about my feelings with those close to me, like my husband, best friends,…[Read more]

Unfortunately, antibiotics and other medications that I have to take regularly (particularly, for migraines) give me a lump in my stomach and ruin my appetite.  However, I always feel so much better once I make it to the other side.

Usually, I deal with feelings of isolation and loneliness by writing my thoughts out or just spending time with my dogs and wife. They’re the best company you can keep! Nowadays, I find community through the larger cf community online by relating to their stories and hopefully, maybe, they’ll relate to mine.