Paul met Debbie

I couldn’t answer a question like that. It’s too vague. Pain is too complex to catch in a number. It also makes a difference what kind of pain it is (sharp, steady, deep), what its location is (concentrated in a spot, a part of the body, all over the place) and the duration (short pinches, waves, continuous).

Questions I consider relevant about…[Read more]

I can second that: limited experience only.

I used oxycodone/oxycontin for a few days after appendix surgery. Didn’t like the effect, made me more drowsy than I felt comfortable with. Also it suppressed the breathing reflex, which caused my blood oxygen level to drop and I was unable to sleep well with it, because I gasped for air every half…[Read more]

Yes Jenny, I think the situation is comparable here. A hospital can dedicate some members of its staff to cf care and form a cf team. Since a couple of years the NCFS, dutch cf patient organisation, regularly “tests” those teams and if they pass the visitation, they get an official quality mark of “cf center”.

In most cf-centers there is a…[Read more]

I have nebulized Tobi for many years. A year after starting it, a light tinnitus developed in both ears that over the years became more noticeable. There might be a causality here. Although little enters the bloodstream, some does and besides that it enters the mouth and throat from which there is a direct connection to the inner ear via the…[Read more]

For us, Halloween is not a tradition in the Netherlands, but the Christmas time is, starting with Advent. Years ago we mostly got together with family to share a special dinner, but the last few years the common cold or flu managed to find at least one of the participants (not us fortunately), so we had to cancel our visit quite often. This year…[Read more]

The morning routine takes as long as it takes to clean my lungs. Since I combine the nebulizing with my autogenic drainage breathing (“pranayama-meditation”), in the morning it takes me about 1.5 hours. In the evening about 1 hour.

I consider my walking our dog Buddha also to be a health routine, so another hour is added in the morning and half…[Read more]

Currently I use the Pari e-flow rapid. It is a mesh nebulizer. Very quiet and effective. Easy to clean also (steam baby bottle sterilizer). I sterilize it every day.

Before I used the Philips Innospire Go, which for me was not very reliable (the mesh was clogged after 3 months and there was a leakage problem). As a backup it will do. It is very…[Read more]

I see your predicament. I talked a bit about this in an earlier post. With 2 broken ribs I once could not cough without pain for 6 weeks, although the first 2 weeks were the most difficult. Even with painkillers, fully coughing presented a deep and stinging pain. But the cough always won. The impuls to clean the airways is stronger than the want…[Read more]

The Netherlands is a small country and yet there are 7 cf-centers. Wherever you go, you can always reach one within a 2 hours’ drive or less by car. So in that respect there is a lot of choice. I could choose between 5 centers from where I live within that distance.

But as things go, one tends to visit the closest center to minimize travel e…[Read more]

A good shave. Not an electrical one, but the real stuff. And then a fine after shave lotion. Subtle, but noticeable. Nothing says Good Morning like that.

It has already been designed, but if it hadn’t, it should have: a Kimono. Seems extremely comfortable and elegant.

The days are september 25th and 26th.
More info see https://www.cff.org/Get-Involved/Attend-an-Event/Community-Conferences/

Gender is not the problem. It is the mind who uses concepts like gender to create differences and separation, that is. Asking the wrong questions is. Not asking the right questions is. Ignorance is.

Don’t try to solve the concept in general, you can only solve the concept in your own particular case by not believing in it. If you feel that you…[Read more]

The Lion’s Den

Hi Jenny, thanks for your great reply. I always try to point to that which is beyond the person who struggles, tells stories, identifies with his/her experiences. Beyond the individual. In doing that, being (a) patient is not a solution, it is feeding the problem because it allows for time to “reach” the process of just being, a…[Read more]

You are right, healthism is a way of separation and judging – but the opposite of it also is that and they can only occur together. I think healthism is a wrong identification with health, as illism is a wrong identification with the absence of it. Both positions are false. Thinking of yourself or other people as being healthy or ill is the start…[Read more]

What I Eat In a Day…. Join Me?

Well, this might be boring, but if you like: since a couple of years no meat/fish anymore. No moral issues involved here (although the mind can think of a lot of them) but it just came to us “from inside” when we got more aware of life in general. Even eggs are…[Read more]

Happy Unbirthday to you!

(this is the time to Google Unbirthday and listen to the song from Alice in Wonderland).

There is a lot of truth in the song. Consider when exactly is your birthday? The day you vacated your mothers womb, the day you were conceived, the day you were a twinkle in the eye of your parents, the day they met, or their…[Read more]

My life has always been thrown around by life. CF only was a small part of everything happening, other than being a great pointer to the unpredictability of life. When CF is in the forefront of your attention, it is easy to attribute an important role to it. But in fact, it only looks like that. Life is what happens while you’re busy making other…[Read more]