What can you believe?

I just read an article on what the actual cost of the CF drug already on the market to help 4% of the CF population is – $294,000/year.

This crushes me a bit.

I knew it would be high – Damn.

I don’t want to be like the Russians. I read recently that Russians don’t celebrate much, or at all; as they fear if they do, the next ball waiting to drop is around the corner. So – I don’t want to be like the Russians. I don’t know if it is absolutely true – maybe, but still good to think about.

So, I think more celebrating needs to happen. Each day.

What is there to believe?

Nothing has changed, really. I hope to start a new drug to help with my green crap. My nurses are working on it.

I truly believe a life worth living is a life with low stress. One that you feel you are living towards things that make you happy today and in the future. It is like you have two time lines: daily and far-reaching. It is in the smallest form first then builds: a good cup of coffee, warm sunshine, giving of one’s’ heart, learning, breathing, music that hits you, striving for a strong core that exudes kindness inside – out, and removing yourself from energy that does not create positivity.

I think what is difficult about this is the CF population as a whole keeps declining after the age 35. The hill for me seems higher, and has rougher terrain. But, maybe that isn’t true. Maybe it has always been the same.

Life, overall, is easier today than it has ever been.
As a child:
I had an obstruction at birth
I was diagnosed at 9 months old, weighing 9 lbs.
Finally inclined after 12-13 months to 20 lbs.
The uncertainty, the acute awareness how severe this disease was –
A roller coaster of medical issues – finally stabilizing.
2, hour-long treatments daily for 18 years
Lots of eating, lots of non-digesting of food
26 pills/meal for 7-8 years, 100+/day; cut in half after age 14
Arthritis ages 12-20
Diabetes at 19 years

Now:
Stable
Lung function still in normal range
Cut pills down again – 40+/day, better than before
2 treatments at 30 minutes – independently, not with my parents
Regulated digestion and diabetes
Stable weight
Able to hold onto protein long enough to build muscle, couldn’t for years.
Cured arthritis
Know more, have more experience

The complications overall seem less now, but my body is older and is scarred more. The elastically is not so much; the process of getting older right.

Low stress seems to be the only sensible cure – maybe the only real cure.

Laughter, breaking up the knots.

Loving life.

That is my focus.

IF the drug keeps showing positive results; IF the FDA approves it; and the finally IF – IF my insurance coughs up that amount of money, it will be a bonus to my already low stress life, right?