Hi Tim,

I can’t speak for all people with CFRD on Trikafta but good glucose control still depends on my efforts. A small amount of simple carbohydrate will send my glucose rocketing with an inevitable crash. There is no gently rising and falling curve on my cgm but something more like a steep rise and dramatic fall. I can usually just ride…

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I still produce some insulin so I don’t have to inject any, but I have to manage my diet pretty well to keep the glucose spikes from happening. I usually eat a high protein diet and have low carb veggies like broccoli and cauliflower. Fortunately, I really like them. Also, cheese. I make a version of bread in a ramekin in the microwave…

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Happy Birthday Jenny!  I had a birthday yesterday, my fellow Virgo.

There are tons of “secrets to life” so I will share one from a man named Charlie Munger, Warren Buffets’ brilliant right-hand man.  Sometime after a birthday of his – he is in his nineties – he told the audience in an annual meeting to never put off until you are 93 what you… Read more

You know what?  I don’t really have a go to album but over the  covid winter I decided to listen to Puddles Pity Party and was glad I did.  He has many youtube videos and, aside from having an amazing singing voice, he is very entertaining to watch.  My favorite one is his version of Sound of Silence.

Hi all,
Glad to hear you had a good surgical outcome. I have been fortunate not to have needed sinus work done. I have been told by one doc that my sinuses were not real healthy and a non-CFer would probably be seeking a remedy but he speculated that a person with CF might have a higher threshold for what it would take to think sinuses… Read more

I like to add salt to beef and chicken. And pour olive oil on vegetables so salt will stick to them. To avoid the carbs of potato chips but still have something salty and crunchy I have learned to like pork rinds.
I have found that kosher salt has a saltier taste than regular table salt so I use that at the table. I haven’t tried salt… Read more

I also like to choose cheese. Additionally, a great big spoonful of peanut butter or almond butter is a favorite and goes well with a piece of chocolate. In a pinch, I will mix whey protein powder in water and dump in a generous amount of heavy cream. Isn’t fat just wonderful?

I have seen some pretty low sugar readings since starting Trikafta. I had been taking a small dose of repaglinide with my biggest meal for many years now and have had no problems until post-Trikafta. I mentioned this to my endocrine doc and she prescribed a lower dose – the lowest available – and so far this has helped quite a bit. … Read more

First off, I feed the cats. They are my alarm clock and when they wake me up there is no snooze button. They mean business! Next, I down a few morning pills while I make a cup of tea. When the tea is ready I’m off to the basement for airway clearance punctuated by sips of tea. Back upstairs I clean the litter box and make breakfast and… Read more

Episodes of “Finding Your Roots” are very interesting.
For guilty, mindless pleasure there is “Schitt’s Creek”.

Oops, a couple more changes/improvements. The use of Cayston every other month is a boon. No more painful artery sticks to get a blood gas – just put out your finger for a quick pulse oximetry. No more being paired with another CF patient when hospitalized. Getting a flutter valve to help with airway clearance. (I have never used the vest… Read more

Where do I begin? As a 64 year old person with CF I have seen many treatment options change, some good and some bad. The bad would be many of the antibiotics that used to be effective no longer are. The good, indeed the best, have been the CFTR modulators. I used to work in a major medical college hospital that is also a CFF center and as… Read more

I read one person’s thought about reason vs. excuse. He said a reason is factual and an excuse is just a rationalization. If you are in a body cast you have a reason why you cannot work out. If you just don’t want to work out you might talk yourself into some kind of excuse to use. The thing about this is it is up to you to determine which… Read more

Are people 65 and older getting prioritized because they are high risk? Of course. So what makes their high risk “better” than the high risk of something like CF? I do not begrudge the 65 or older crowd for being eligible ahead of someone with CF or some other condition that makes them high risk, I just wonder how the distinction is being… Read more

Congratulations! I hope the vaccine pipeline starts to open up a little wider soon. Mostly all I hear about are delays and shortages. Also, it is a bit disheartening that some people are declining to get the shot. I just hope it is due to valid reasons rather than misinformation or mistrust.

Hi All,
More psychology. I will start with this quote that comes from an author named David on the website Raptitude:
“The real pain of many tasks is psychological, arising from the way the mind processes them, not so much from the actions that constitute the tasks themselves. The general rule seems to be this: the more abstract we make… Read more

Hi All,
I read somewhere that Alton Brown will add a bit of salt to coffee to reduce bitterness. I tried it and it did seem to make the cup a little “smoother”. I would only do that to bitter coffee which I don’t tend to buy. As for me, coffee never seemed to be a problem. Two cups a day. I believe the diuretic effect is more than offset… Read more

Nonirregardless. Everything that happened this year happened nonirregardless of how we feel about it. Kind of like all of life. That, Jenny, is my perspective.

“Anything worth doing is worth doing poorly.” Ha! I remember my brother saying this about 30 years ago and it is so true. I think a key to maintaining exercise is to just get started. Trying to hold yourself to a strict routine may actually have the adverse effect of you doing nothing on days you just don’t feel into it. Instead, tell… Read more

I was not given specifics about just how much fat must be taken with each dose, only to take it with some fat. I just looked up the prescribing information from the Trikafta website and it says, “TRIKAFTA should be taken with fat-containing food. Examples of meals or snacks that contain fat are those prepared with butter or oils or… Read more

I have not been told to take a specific amount of fat, only that fat must be taken with the modulators. I love fat. I usually use cheese or full-fat Greek yogurt. I am always willing to add liberal amounts of butter or extra virgin olive oil to many things, especially vegetables. I have no limits to the amount of fat I am willing to consume… Read more