I am taking a pause for a moment to write about CF.

It was just announced at the North America CF Conference (NACFC) that the average or median lifespan for CFer’s just jumped from 41 to 47 – I am sure due to Orkambi.

This is amazing news. The variables are in question.

Now, there are a lot of CFer’s who are still like, “Great, but I still feel like crap.”

When I see and read these comments, I get it.

I also go in the exact opposite direction and want to go hiking or walking or anything. Although, I will tell, hiking at high elevations has become much more difficult. Then, I say, “I am 40 . . . I am 40.” Then, I say, “That is why I go back to MN. That is why I don’t quit. That is why I work my ass off every fucking day.  That is why I almost go crazy some days.”

I try and I try and I try.

I have never encountered anything harder than CF. I pray, literally pray, I hope I never do.

When I go home from working overnights – I usually go on my treadmill and do my neb. I figure, then I am done for the day. I really have to go on the treadmill everyday. I don’t feel as well and I cough more when I don’t.

Mentally I think as well, there is no way those bugs can live down there too long if I exercise and kick them up. Probability-wise, acceleration, and movement of breathing. Your cells actually change and reshape when you exercise. Your body literally performs better when you exercise.

At times, I do cough so hard I have to stop and get off the treadmill. Then when it cycles out, I get back on until I am done.

Then when I hear or read negativity, I think of my friends that are gone.

Adam at 21.
Nicole at 27.
Mark at 34.
Other friends of mine that I have conversed with online, and then they disappear, because they are gone. I have stopped conversing with CF people online because of this.
I wonder if my fellow CF campers are still alive.

This is what happens, and I don’t think people get this, when CF people get quiet, often times it means they aren’t doing well and they go away. I imagine this is true for other condition as well.

It is this pulling away in a quiet and haunting, yet sudden and alarming.

When I didn’t speak to Nicole for a while, I woke up one day, and said, “I need to talk to her.” And then when I did, her husband said she passed 3-months prior. Same thing with Mark, 3-months prior.

They got quiet.

I personally don’t think I will “get quiet.”

What I do know, instead of going online and reading all this negativity that just makes my skin crawl, and as if I just put on a heavy cloak – I go for a walk. I watch a comedy. I read and I find new words that I didn’t know before. I talk to a friend, especially one that makes me laugh and we talk about anything, it doesn’t matter. I do yoga. I stretch. I play with my dogs. I have a good cup of coffee.

I work my ass off, because I should work my ass off.

I honestly think everyone should work their ass off.

Work their ass off at living.

This guy here, inspirational. Check him out, just amazing, and get to work. It is 4:50am and I have been up all night. I feel I can say that.

And I still love that One Republic did this video:

Much love and hugs.

Facebook Live: CFer Josh Llewellyn-Jones Shares His Health Tips