Paul met Debbie

No, I don’t resonate with this terminology. I don’t want to fight, let alone be in war, with anything or anyone, certainly not with my own body. It sounds like a lot of effort and lost energy. Besides, how do I know which strategy to follow? When to cheer, when to attack or retreat, when to feel victorious or defeated? I really wouldn’t, it’s much…[Read more]

Hi William, good morning,

Sorry to hear of your situation. You might be interested in the following:

http://www.pnas.org/content/117/3/1621 that was brought under my intention through the dutch cystic fibrosis patients organisation ncfs.

This large study was published only two days ago, with the telltale title: “Cystic Fibrosis carriers are at…[Read more]

The best way to handle it, is not. Don’t believe it (unless there is some truth in it, but mostly it stems from ignorance. Your intuition will know the difference). So forgive them, they do not know what they are doing/saying/believing. They are ignorant. It happens a lot, it is a condition that really goes around much these days on this planet.…[Read more]

No it’s not just you, it is how the mind works for 99% of humanity. The mind is not realistic. It’s not per se because of your health, by the way (although that adds a challenge – but nothing you can’t handle with a little experience and wisdom). Most healthy people have exactly the same problems.

Your mind has a different agenda than your bod…[Read more]

Well, 30% fev1 and neuropathy in legs and feet does not a Roadrunner make. So I do things slowly. I found out that exercise is only benevolent when it becomes a sustainable routine, so there must be some internal motivation to it. If it is solely with a sense of duty (“I should …”) you will fall off the wagon repetitiously. So my advice would…[Read more]

Just be your natural self. Nature doesn’t need esteem, it is innately complete. Self esteem is a concept of the (modern western) mind. Get rid of it, it’s a prison and a treadmill. Does a flower need self esteem, or a bird? It’s just naturally flowering and birding, doing a great job without doing. Stop doing and trying and stop even that, just…[Read more]

Yes, I can surely relate. I was always careful not to be too close to people having a cold or flu. Earlier in my life I felt there was some room left to be negotiated and take some calculated risks. I could survive a cold without too many consequences. Nowadays, I think my lung function does not allow for this anymore and I try my best to avoid…[Read more]

When my parents were young, they had two children. One of them had cf and died at the age of 7. It is very likely that this death somehow contributed to my parents having two more children later, one of which is me. So, survivors guilt could have been my thing from the very start of my life. Only, it isn’t. Why not?

Because I don’t make up…[Read more]

Christina, your first reaction was perfectly understandable, your second one perfectly lovable.This all belongs to life.
Bless you and your children.

Improving on trikafta and losing your disability would of course be good news if you are young and your energy improves so much that indeed you feel fit and healthy again and are eligible for a new job. This is how I can feel and agree with Christina’s input.

The worries that Jenny and Elisabeth mention, are about a situation in which you are out…[Read more]

Not standard, but in my opinion important next to antibiotic therapy, is anti-inflammatory treatment. For instance I use every day 2 x 50 milligram Diclofenac, 2.5 milligram prednison and every other day 5 milligram Levocetirizine. Since starting Diclofenac 5 years ago I had no exacerbations, in the years before I had 5 severe exacerbations every…[Read more]

Does cf define a person?
It is always better to be grateful for experiences than to resent them, no matter where the experiences seem to originate, i.e. from cf or another source.

1. Nothing defines you
That said, the core of the matter is that nothing that happens can ever define you. Happenings just are. They are the essence of what is called…[Read more]

As a man not being a father, I am of course not qualified to answer this. But I think this subject is bigger than the word “mom”. Guilt is a universal problem that does not only apply to mothers (with or without cf) and their child. So let me point to a broader answer.

As always, the answer is in the question. We need to not look at what we feel…[Read more]

btw How does it work, planning for a virtual event? I am curious about it!

I was diagnosed at the age of 4, it was 1967 (sweattest) and in that time an earlier reliable diagnosis was not possible, the cf gene was not yet known then; however, cf was already known in my family so the chance of me having cf was 25%. I had no real health issues at…[Read more]

Pets have been and still are important in my life. I never thought about risks/benefits (I should, but just didn’t). But in general the hairs and skins of pets might trigger some airway inflammation as a risk. And a benefit of having a dog in the house (besides having a noble creature around that thinks of me as God), is that it triggers my…[Read more]

This is what happens in life. It happened to me several times. Until I got the message. It has nothing to do with cf per se. We have identities and believe them into existence. Than life which is ever changing comes along and frustrates us in persuing this identity. We have an identity crisis.

The common mistake we make is that we think that now…[Read more]

This research of 2019 is no surprise for me. I predict that NLRP3 inhibition will not only help against specific infection with P aeruginosa. It will probably reduce the hyper-reactivity of the immune system in the cf-airways causing the excessive inflammation which lies at the base of every uncontrolable infection in cf, no matter what bacteria…[Read more]

The Philips Innospire Go is my all time nebulizer at the moment, not only for travelling but I do all my treatment with it. It’s a great little thing and it delivers!
Only thing to be careful about it to never boil it in anything but demineralized water, because it can’t stand any deposits that are in normal tab water. (in the Netherlands, our…[Read more]

If there is pain, there are four options. One could (1) accept the pain and make it an integral part of the experience of life, and that will basically end it as a separate thing. The pain would still be there technically, but there would not be any individual entity (ego) to take ownership and say: “Ouch, that’s my pain”. This requires a process…[Read more]

Let me ask the question more fundamentally: who thinks and talks about purpose in the first place? Where does this voice originate? Is it natural to us? Probably not.

Given that we are part of nature like all other life forms, animal or vegetation, we fundamentally are the same. On a being level that is. Now, on that fundamental level the…[Read more]