So – things I have been doing since last time I wrote – focusing on the NOW; today; live one day at a time.

I feel I have done this for a large portion of my life – but I am narrowing in even more so.

I could write an essay on how to live for now and then try and plan for the future, but never really knowing the future and not betting on it. It is a complex system. What I have kind of come down to is don’t do anything super foolish, plan somewhat for retirement, but don’t go crazy. Pay on expenses that would leave your loved ones in a bind, and the expenses that don’t get passed down to your heirs, just pay on them monthly – don’t go crazy. It is balance, right? The fore-front in my mind is always Sheila. I always want Sheila taken care of in the event . . .

With that being said – the NOW: tools I have come up with, to keep present if I start to get stuck. These things uplift my spirit, clear my mind, and push energy along for energy doesn’t become stagnant and heavy; in no particular order:
-Take a shower
-Working-out
-Coffee
-Laughing
-Walking
-Reading
-Writing
-Talking (engaging with friends)
-Eating
-Candy (in small amounts)
-Ellen (always makes me laugh)
-Madonna (music that I can’t be sad to – Madonna is one of them).
-My puppies
-Sheila of course
-Really trying to meditate (I wonder if it is the same, or close when I stare off into space for an unknown amount of time while doing my treatments. Sometimes I have no idea what I am thinking. I think it is similar).

What I have learned:
My appointment with my physical therapist, Matt, uplifted my spirits; he spoke on what I have truly believed my whole life – exercise literally is the key to life.

He went even as far to say exercise is the cure of CF. He spoke at the 27th annual CF conference at the end of October and he said just that. When a CF person exercises, you create moisture inside and out and it hydrates the cells inside that are so dehydrated. It opens up the airways, hydrates, and kicks the bad stuff out. This is as good as my therapies, what some of these drugs are trying to do at the cellular level. But – this happens naturally when you exercise.

He said the best way, which I have read about and have been talking about, is to get the heart rate 80-100% of max, 15-20mins, even 30 minutes, 3-4 times a week; then followed by my chest therapy, and medications to hydrate my severely dehydrated lungs. The moisture, breathing well, hard, while still being safe, opens up the airways and with the acceleration blasts the stuff out.

To give a quick synopsis on what my genotype does or doesn’t do:

-Protein is made in the mitochondria in your cells

-The protein called the CFTR is suppose to go up to the surface of the cell, literally float up like if you were at the bottom of the ocean and you float up to get air, and equally exchange as a gatekeeper per se, salt and water in your body. My protein gets probably about halfway, maybe close to the surface of the cell, and then folds like a contact lens folds into self and falls back to the bottom of the cell. So the salt stays on the outside of the cell and too much water inside the cell. The salt sits there, like snow, and collects everything that passes by, including bacteria called pseudomonas aeruginosa (PA) that never really truly ever goes away once you get it, because the CF lung can’t ever truly clear it away. When you treat it, the population goes down but probably never truly is eradicated. It is PA that causes all my lung infections, at this point in my life. And all of this is because the CFTR is a dead-beat. There is a chance it gets some of the work done, but it is unclear.

Other mutations vary; some people don’t even produce the protein, some get up there and do something, maybe not all – but do something. Overall – there is the basic statement of “who in the hell knows…”

But the conversation with Matt was really inspiring. He says to me, “You are 36 years old! You look great.”

We made sure I was going my interval training correctly, gave me some pointers, and he said that I am in the top 10% of all the patients. After working on the treadmill he then said my recovery time from my max heart rate is stellar.

He said, “I want you to have these scores in 10 years.”

With doing my interval training, doing yoga 1-2/week to really stretch and strengthen my lungs, keep my posture up and back as lung patients over time start to hunch – I will be great. Use my diaphragm and knock it out of the park. All of this is to keep lung infections at bay, and exacerbations away. Use my tools to keep the energy moving and not to let it get to me. I know there are hard days ahead – but I sure the hell feel better when I exercise, swear, and use some of the anger, deep in my gut; it’s like someone is taking a hold of me and pulls me up and shakes the shit out of me and says, “Move it.”

And to keep in mind, the main thing with these new drugs is to keep my lungs at the best and highest score it can be. There will be a little bit of a bump up and then CF patients usually plateau.

Exercise is the key. He even went as far to say – that exercise is almost a better indicator for life expectancy, longevity, than lung scores.

I can exercise. I can do this. I would much rather see him every 3-months than blow in that machine.

Exercise. Exercise. Exercise!