paul-met-debbie
Forum Replies Created
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This is great to hear!
We are not trying to get pregnant ourselves. But the reproductive system has changed for the better since Kaftrio. See our earlier post commenting on day 9.
Besides that, Kaftio increased the energy available for creation considerably. I was figuratively pregnant with idea’s and since August I wrote many Tales for our website, more than in the 7 years before together. Enough even to make a book out of it, that describes a life with cf and the liberation I found through it. Also on our website soon.
Cheers,
Paul
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I am not a parent, but I grew up in a Dutch family where two of the four children of my parents were affected with cf: me and my brother Rudy, who died before I was born.
On our website I share the story of our family life and the role that cf plays in this. You can find it here. The story spans a period from 1919 up until today. Hope you enjoy reading it.
with Love,
Paul
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Self acceptance is indeed the key to a really happy life. Denying is a bad way of coping with what is. Acceptance is however not a means of coping in itself, it is just the first step. After this, we need to let go completely and let life take its natural course. If we fully comply, all will be complete, nothing is lacking and nothing is in excess. There is not even the need to identify with the situation after accepting. There is just what is and what presents naturally. It is not special, it needs no identification, it is completely free. There is no need for doing even. Everything happens by itself. And we are it.
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How do I manage? By realizing that there is nothing to manage or control, plan, schedule and track. We may try this, and find over and over again that life is completely free and without agenda. It will do exactly what happens, which is seldom what we planned. So, trying to manage life is a recipe for disappointment and frustration.
In stead, I surrender fully to what is. This is a recipe for joy and amazement. It frees up my mind from 99% of thinking, and all of this power comes available for Being. This allows me to fully Be Here Now. It is amazing, realizing what is directly, without the numbing interface of my mind. I learned to do this and never went back. No, I am not living life, I am life. This power of Being is much more intelligent and sensitive to what life throws at me, and solutions are reached with almost no effort, outside the box in ways that my mind could never have come up with. Intuitions is much more intelligent and natural than our thinking mind could ever be. Now, life is effortless and natural again.
Cheers,
Paul
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I find strength in love. Love for life, Love as life, Love for my wife Debbie and our little dog Buddha. I find strength also in writing, reading, music and nature.
When the going gets tough, in the end I find incredible strength in surrender. Life is always complete, in sickness and in health, it will present itself just the way it is most fitting for the moment. Surrender, or compliance, teaches the ultimate lesson: we are not separate from that what is, we Are that what is. We don’t come into this world, we came out of it. And he who put me here, will also bring me home.
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I like to walk. I have a dog. She likes this too. We keep eachother fit.
I am not a warrior tho. I am not my fighting my body, disease or anything. I cooperate with it. We are in this together. Or actually the body is in me. We take care of eachother. This is a thing of peace, not of war. A quiet mind in a happy body.
Life expectancy for me is not about longevity. I am not here for the quantity. I am here to be an emanation of nature. Nature comes and goes, that’s its quality. Life expectancy for me is about what I expect from life and what life can expect from me. Which is compliance, creativity, joy and surrender. This is effortless freedom. And Love. My body is from 1963. I am however the timeless one.
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Typo: in point 1, it should of course read:
If you ever want to know what real NON-dualism is all about, read this Hsin Hsin Ming.
We found so many typo’s in our own proof print, that this one is in good company.
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What a wonderful story! I can relate to this very well. Keeping busy enjoying life is a great way to prevent too much identification with the disease. A healthy mind for a healthy body.
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The specialist was missing the point. It is not about control. Trying to control nature is not the way to go. Better to go beyond it. Then we will find no patiënt and no disease, only what is happening and our intuitive response to this. Wu Wei.
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Yes, talking about tattoos can be fun. I can relate to it more or less as follows:
For me, the question is: who is in need of improving the body image? Not the body itself for sure, it doesn’t have or need an image of itself, it could’t care less about its looks. And the same goes for the brain, that has enough to do already to make the body work and compensate for the disbalance that cf causes in some ways.
So it must be the personalizing mind with its erroneous thoughts about who it is and what it perceives us to be, that has a problem, which it tries to solve with a tattoo on the body. Which is quite a lazy and cowardly thing to do, putting the body through that ordeal while it watches the procedure from a distance and keeps its hands clean, not being stung by a needle. And what’s even stranger, the mind doesn’t know who we really are, so how would it know what tattoo will suit us best? What a predicament.
Well, anyway, I don’t feel the need to reclaim a body, mine or anyone else’s, for I am complete already and the body and brain are in me, doing a great job regardless of apparent scars and looks. But I see a lot of bodies around, decorated with or without tattoos, and they all look great and creative to me, so by all means:
Tat too or not Tat too? That’s not the question. Where to put it, and what to chose? are the real questions. I talked about that before, answering a call from Jenny some while ago. I think I comcluded that I would not mind a tattoo with invisible ink, and then I realized I am already covered in such a tattoo, shining beautifully pink all over my bones and muscles.
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Great question!
Good to hear that Randy is doing well after surgery, Jenny. We wish you all the best. I am sure he is in good hands with you.
What comes as naturally to us? Everything and nothing I would say. It depends on how familiar we get with it. So, I try not to entertain convictions about this, it is all very fluent in my experience. Convictions might only get in the way of the natural doing.
It could be that pwcf are more used to being taken care of, than of taking care for others themselves. But it needs not be that way even by definition. We can take care about many things in many ways for many people. Since all is one, all that happens, is taking care of itself. These happenings need not be owned by anyone in particular.
On a more mundane level, Debbie and I take care of each other constantly in one way or another. Roles are not an issue in that, so there is nothing to reverse in that on purpose. Things get done in the most natural way, how and by whom is not important and many times, not even noticed. We thank each other every day for all that has been done through us for us. We like to take care for ourselves and for each other, and for others as well.
When one of us needs extra care because of health issues, the other jumps in naturally, as the one hand that caresses the other when in pain. It just happens by itself, no doing or owning involved. Psychologically, the mind might indeed find it more easy to feel the own body suffering, than to see the body of the loved one suffering. This I think is a matter of getting used to as well, and ultimately these kind of thought patterns are not be entertained at all, for in the end, they are egoïc and have to do with being in control, disguised themselves as being empathic. Real natural empathy is non personal. It is like the sun shining for all flowers, not for one in particular. It couldn’t not. It’s effortless as well. The sun shines as easy on us, as it is shone on by other stars.
Valuable insight I got in the many years of caring or being cared for: when being cared for, let the caregiver handle things in his/her own way and don’t try to help/interfere/direct. When taking care, try to envision how you would want to be taken care of yourself in that situation. In both situations: be very present and alert and look for small signs. When in doubt, communicate this doubt and ask for directions. Don’t presume, be clear. And in all other moments, kind stillness is most conducive. When caring, tread with care and make yourself invisible. When being cared for, be grateful and acknowledge the caretaker.
In short: love and be loved, love and let love be.
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For those of you who downloaded earlier than Monday, 25 april, I updated the Tale with some extra paragraphs on the use of drugs and alcohol as a means of changing the state of conciousness. In it, I explained why this is not a road to liberation, as can be learned from the story of prof. dr. Richard Alpert, better known as Ram Dass.
Enjoy!
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Ah, thank you! That is so considerate of you to think about my problem.
I think the link with Trikafta is strong enough for me to conclude this is a Trikafta-induced allergy. My wife is allergic (hay fever) as well so we take all precautions possible (hepa filters, moisturizing, dust-free house etc, special vacuum cleaner etc. ). Even our dog is anti-allergic (australian labradoodle) and we keep the fur short. I am pretty sure this is an allergy to one of the metabolites of Trikafta for it started right away after taking it (week 2) which was in a non-allergic time of the season (August). So far, the antihistamine drops I started in April work fine. I wonder if in autumn/winter, when there are less pollen, their will be even more improvement or not.
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Thanks Tim. Tried artificial tears, not much better than 0.9% saline.
After that started antihistamine eyedrops, they work very well. Twice a day 1 drop and my eyes are much less sensitive now. Livocab (levobastine) 0.5mg/ml. So it seems allergy related. Perhaps after spring time I need less of it.
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Yes I know exactly what you mean, Tim. And every religion started as a philosophy (an experience of being) – but not all philosophy is making things clear. But they are not all nonsensical. I too had your experience about what most philosophies/religions had to offer and didn’t think it was bringing me any closer to a truth. And then I was pulled into a new direction that provided exactly what I intuited.
Since Rene Décartes thought that the source of being was in thinking, most philosophers after him changed the question of research. In stead of asking Who am I, they only looked at What do I Think? The thinking about thinking is what Western philosophy has turned to since. And it produces exactly that feeling which you described so eloquently in your answer. Points of view with some proof, and opposing points of view with another proof, thinking themselves into knots. This is what the mind does, for every thought is an abstraction from reality and carries his own deluded reasoning.
Then, disappointed in these exercises of mind and cleverness like you, I turned to Eastern philosophy, in particular to Advaita Vedanta, the philosophy of not-two ness (Hinduism) or nothingness (Buddhism) – they are the same. And Daoism, This is not about thinking, but about Being. And here it is not a matter of who has the best proof, but what is your Realization. And following this method, which is more like psychoanalysis avant la lettre, all come to the same Realization, that needs no proof for it is self-evident. It is who we really are. No thinking required, just the pure being, the unborn mind. It is the dissolving of philosophy in a way. Eastern philosophy is millennia earlier and fundamentally more true that what we in the West have been trying to think out in endless talks we call philosophy, which are only little games of cleverness and mindstuff that in the end did not bring us any further. I have read most of them and they are all going from the wrong premisses and are utterly useless and deluded. Clever, but deluded nevertheless.
In the Advaita philosophy, and equally so in Daoism, there is no need for a proof of god’s existence. For we are it. Like Jiddhu Krishnamurti already said: “I used to be an atheist – until I discovered that I am god.” And he meant to say: we are all “God”. We are all the revelation of god. This is also what Jesus’ teaching is about. He was not proposing a religion to believe in. He was telling about his own Realization of Oneness, the Kingdom of Heaven and he pointed us back to ourselves: it is In you! Advaita vedanta in the purest form. Jesus was a nondualist without knowing it. A messenger of Dao. This reality of Dao is for everything and everyone, it is not only for us humans, but for all life, and all matter as well. Every manifestation is included and is a revelation of this Dao. It is the reality of Neverything. If you are coming from a Christian background, you might enjoy the video’s of Marshall Davis, who translated the Christian vocabulary and values into Daoist and Advaita terms and shows very clear, that they are all the same after all. It’s called Christian Nonduality.
I recently wrote a little tale about this, about the fundamental difference between what we call an Experience (which needs proof and differs from person to person), and a Realization (or Revelation) which is self-evident and is equal beyond personal interpretations. No religion can be formed upon this, for there is nothing to believe in. But it is much more, it is what and who we really already timelessly are. It is on our website (Tale 27). You might enjoy reading it. In the end, I (hope I) managed to even point to a way to dissolve the difference between the two. Oneness in the most pure sense.
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Chiming in a bit late this time, had to pass a kidney stone Monday/Tuesday (Trikafta related? Who knows). Not recommended, don’t do this at home kids (I did).
But back again, Jennies personal expertise and compassionate heart have already done their work I can see, and I also can only highly recommend Tim’s knowledge and wisdom that springs from his outside-the-box observations and broad expertise as a vet. Ever thought of vets as super-specialists in treating the ailments of biological life? I did. They do everything and have to know a lot about a lot. They even do surgery. A vet is a complete package of hospital care in one man/women. They have never lost the overview of the entire body of the mammal (and they treat other species as well), in contrast to many of the current specialists that treat human bodies in the hospital, scattered over many specialties.
Back to Trikafta/Kaftrio. There are many types of ion channels in the body, and even many types of chloride channels that work completely different from the CFTR channel and will not be affected by Trikafta directly. Trikafta is only designed specifically to act on the CFTR ion channels. But it is almost self-evident that changing the ion balance in two systems as large and fundamental as the lungs and the intestines are, will have effects in almost all of the cells and organs of the body. The body is a complex chemical/electrical machine and ions are the main messengers of the electrical part, next to proteins that do the rest of the messaging (hormones and neurotransmitters are mainly protein based). For instance for nerve cells the ions are most important. This can effect almost all organs, because the nerve system is omnipresent in the entire body. The body will have to adjust to this, and it takes time.
CBT will be helpful in the mind-part of the suffering no doubt to reduce mental resistance to what is happening, and to shy away from personal identification with what happens, but of course it can’t prevent or diminish the actual side effects you have in the body themselves, for these are involuntary reflexes that go mainly beyond the mind. Learning to ignore the thoughts that come up in the mind that tries to cope with these phenomena, helps in the suffering of course. But when there is still an active mind, it only goes so far.
When in pain from the kidney stone, my doc, after consulting my specialist) shot me with buscopan (methylbromide). It helped me relax the urinary ways and pass the stone, but it had noticeable side effects as well. Like a fast heart rate (up to 130), and tightness in the chest that made me sort of hyperventilate in the middle of the night. Waking up with hyperventilation is not fun. Normal Pranayama meditation was not possible anymore (too late) , for I lost the ability to focus on the breath. I could count to three and then I was lost again in an unclear active mind. Fortunately, Debbie put a strong peppermint in my mouth that Pavloved me to focus on that taste and smell, and together with a guided body scan meditation that I repeated over and over again, I came through a couple of hours of severe unrest and anxiety. I didn’t dare to take more painkillers or any tranquilizer because I didn’t know how this cocktail would affect my already disturbed mind. Trying to follow the guided meditation made my mind slow down and get distracted from the bodily phenomena enough to have little moments of sleep and to hang in until the buscopan had worked out (24 hours after administering). By then, the pain was also gone and next day I could slowly walk our dog again.
So, mind and body are one and only as such we can cope with situations like you describe. And it takes time and patience. Hang in there, the solution is already on its way, although we don’t know how. The body miraculously takes care of everything eventually, if we allow it to do so and don’t let the impatient mind interfere too much with it.
By the way: I suffer from nerve-twitching legs also as a result of nerve damage from too much too long fluoroquinolone antibiotics (ciproxin and it’s nephews/nieces). This periferal neuropathy is disturbing indeed, althoug in time, one grows accustomed to it and learns to sleep anyway. But occasionally (a few times a year) I suppress it with a low dose of tramadol. Also, sometimes a simple tylenol will do the same and numbs the nerves enough to allow me fall asleep.
I am not a medical doctor, but with 58 years of cf-experience one gets the drift of creatively dealing with the body in ways that are not described in medical handbooks or medicine leaflets. One also builds the courage to experiment, even if doctors can’t recommend it. It has save my life on many occasions to go against doctors advice. Doing the same thing over and over again and expecting a different result is the definition of insanity. I am not planning on that strategy as long as my brain is still clear enough. I can’t recommend it officially though, but I always think it’s my body and I decide how to work with it. I listen carefully to all advise, but if it doesn’t work, I will work it out myself. That I can recommend of course even officially. Tramadol is not to be used continously though, because it leads to addiction and habituation. But an occasional dose might be helpful. Discuss it with your doc (family docs are often more courageous than specialists and have more holistic overview).
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Good subject!
So, ask yourself Jenny, or anyone who reads this post and identifies with this problem: who is the one your are talking about who would love to be more excited about moving the body? Isn’t the body excited about some type of moving by itself? Without needing “assistance” from your planning and scheming mind? Isn’t it your mind that enjoys to produce thoughts about “I should do more/less of this/that” the one that is really bothering itself and its image of “you”, while at the same time it is not about the mind at all, but about the body? It is not the mind that abstractly makes up a need to exercise, walk, do fitness? “It” (as far as it exists at all) will be lazily hanging around somewhere in the body (that’s what you think at least) while the body is working a sweat, won’t it? So what the h*ll is the mind interfering with when in the end, it will do nothing of the kind and just watches the body work out, while doing nothing itself at that time? It’s none of its bloody business to interfere in the innate needs or the body! If it doesn’t exercise itself, it should not meddle with the rules of the game either, don’t you think? Would you accept a neighbour or a friend pushing you to exercise your own body while he/she is sitting lazily on the terrace, drinking a cocktail? You would tell him to mind his own bloody business, wouldn’t you? So, tell your mind the same, tell it to shut the f*ck up and stop interfering with the innate natural needs of the body.
And this is precisely why planning about these things in the mind won’t work, or only very shortly. These thoughts of the mind are not embodied at all. There is no integration of body and mind happening here. The body doesn’t like or need to be pushed around by the mind. Actually, the mind and the body can’t be integrated, because the mind doesn’t exist other than in fruitless thoughts like these about should and shouldn’t, want, don’t want, crave, hate etcetera.
My solution: don’t think about this at all. If the mind is still, intuition will do its work by itself. There will arise a listening by the natural brain to the innate needs and pleasures of the body, an understanding that will go way beyond the current process of the talking mind. The body/brain, in the silence of not being disturbed anymore with stupid thoughts about training, will pick up effortlessly the exact needs of itself and the body and exercising will happen in just the way, the moments and the intensity as is perfectly suited for what is needed for the intuitive system.
Then the exercise will not be exercise at all, it will be moving happening by itself, out of nothing less or more than the pure Joy of moving. Probably you will suddenly and unplanned find yourself walking in nature, running with the horses and the dogs or your child, walking trails with your husband – just by itself, for the sheer fun of it. And there will not even the thoughts of “I am exercising, I need to do more/less of his, I am proud of myself to have exercised according to plan, I hate myself for not exercising today” etc. Just let it be. Quiet the mind, don’t listen to it, and in the stillness and space that arises, everything will be taken care of naturally, Wu Wei. Trust this. Try this. You will be amazed.
SO, I don’t exercise at all. Yet, according to my little device that keeps track, I see that I have done over 600 miles of walking, in 707 walks, for a total of 26.598 minutes (wow, never looked at these statistics before) since I bought this little thingy, 2 years ago. It all went by itself. And the dog enjoyed it very much also. And then there is the stair climbing 4 times a day to reach our apartment on the second floor. And there is resting and sleeping in between, sitting on the chair typing posts and Tales, lovemaking, cooking, cleaning the house, completely naturally happening by itself. No plans, no effort, no frustration, no guilt, no thoughts. Life exercises itself, if you ignore the thoughts and just let it do what it naturally wants to.
Look at your animals: do they have plans, scheme’s, platforms, systems? No. Do they exercise? No. Do they mover? H*ll, yes, of course! Do they detest it? No. When moving, are they having fun? Yes! At the end of the day, have you ever see a horse thinking: I should have moved more today. No! How do they know how to move, how much to move, when to move? By themselves, by listening to their innate nature. Do they think about it? No. That’s why and how they know. It’s called intuition. Wisdom is another word. Follow them.
Exercise for you: force yourself to sit still for an hour and look outside, not thinking, not doing. Forbid yourself to move. Watch your breath going in and out. See what arises! I guarantee you, before minute 61 is over you will be moving with Joy!
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Forgot to point out: the neighbor (aka the mind) I mentioned above is drinking your cocktail, eating your food and breathing your air! And doing nothing is return except bothering you. I would ignore him.
Move your Body, the title is almost right. I would say: let the Body move!
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Yes I remember us discussing the theory of protection by the thick mucus layer becoming less after trikafta. Can’t find the original post anymore though. Thanks Jenny, for reminding me!
Currently the eyes seem to be under control with the antihistamine drops well enough (and tablets). If in next winter situation improves even more, this could indicate that there is a general alllergic component to it as well. In both cases however, handling this will amount to the same: antihistamine tablets and eye drops will do the trick, since other measures are not available. Perhaps in winter the drops will not be necessary.
It’s fine though, it’s only a small price to pay for all the benefits Trikafta/Kaftrio brought me. This has become a very interesting forum item so far, with a lot of people chiming in and giving precious advise. I am very glad about that, this is what a forum is (also) for I think. Thank you all.
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Thanks, Tim. Perhaps I will contact an allergiologist.
Re our dog: she is an official pedigree, and we have tested her on being hypo allergenic. One of our friends has a severe allergy against dogs and cats. But she wanted to join our art classes still. So she tried it out and even being in the same room as Buddha for more than two hours (who also wanted to be petted) she did not suffer from any trouble. So, we concluded Buddha past the test.
Thanks for the shampoo tip! Malaseb, never heard of it. We can buy it here too. Is it the shampoo with myconazole and chlorohexidine? Buddha is hypo allergenic, but indeed she suffers from allergies herself nevertheless. Especially in this time of the year from the grasses in the meadow we suspect (gnawing at the paws after the walkabout). Mostly we wash the paws after walking, but adding this shampoo will perhaps even work better!
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Hi Leslie,
Great to have you on the forum and good questions, many of which Tim already thought about.
CF to my knowledge is not about more mucus per se. It is about more thick, viscous mucous. It could be called ropey indeed. Saliva is mucus as well. Mucus is a mixture of water and proteins. With cf, there is less water because of too little chloride ions and this makes the mucus thicker. After taking trikafta, the mucus becomes more watery and so you might experience this as “more” mucus/saliva, and this might also increase the experience of ropey-ness that before was not noticeable so much. Still trikafta only moderates cf, doesn’t completely cure it, and the mucus is still thicker/ropier than in people without cf. This is no problem, only a phenomenon to get used to.
Like Tim, my first reaction to you mentioning not having had covid was “you don’t know that, might have had covid anyway”. So time might cure your taste problem. I don’t know of medication that changes taste for good, even after stopping it, so it might return to normal after all. Hope so for you, taste is a very important sensation.
Trikafta might have something to do with taste as well. I experienced a very slight and subtle change in taste since trikafta. Not pronounced enough to pinpoint it to a specific taste of something (like metal as you report), but still. It is especially clear at night, that I notice my saliva tastes differently to me. I attribute this to more watery saliva. The increased flow makes it possible to notice the taste of saliva for the first time in my life. So I think it is more a question of “new” taste than of “different taste”. I got used to it by now, after 8 months of use.
Some foods indeed can induce a metallic taste in the mouth. You mention scrambled eggs, funny because I always have had a metallic sensation with scrambled eggs indeed. If you look for it on google, you will find the explanation. You are indeed tasting iron from the yolk and sulfur (hydrogen sulfide) from the white which combine to ferrous sulfide. Tomato sauce increases the experience because of the acid in the sauce. Experiment with lower temperatures (slow cooking) and different material cooking pans (with or without teflon coating) can change the taste of metal a bit. Other foods might have a metallic taste as well, it is a well known phenomenon that often has a clearly explainable chemical origin, like with the eggs. If you google food and metallic taste you will find many examples.
It might be that your taste increased after trikafta which made you more aware of tastes that before you couldn’t notice. Other food may even taste better or more intense after trikafta. For me, this is how it worked to some extend. It is subtle, but definitely noticeable. You might need to develop and fine tune your taste experience all over again, finding different foods attractive or not attractive than before. It might even be an adventure?
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Wonderful Tim, thanks!
The question then would be: who is it, that thinks he is sitting or thinking? Decartes thought the answer was “who we are” (Cogito, ergo sum – I think, so I am). But obviously this can’t be true, for even if we don’t think (like in deep sleep, coma or general aneashesia, we clearly are – who would there be to wake up otherwise? It is only the mind that thinks “that it is (separate)”, but clearly the brain is doing much more than being concerned with a persona. It needs not do that to perform all of its complicated tasks of running the body. The persona would only disturb that with sticky emotions and thoughts So more correctly would be the statement “I am there, where I don’t think” (ubi non cogito, ibi sum), about which there is a Tale on our website.
Alan Watts wrote a funny limerick on the subject :
There was a young man who said “Though
It seems that I know that I know,
What I would like to see
Is the” I” that knows me
When I know that I know that I know”.
Alan was a great guy, an elegant bum, sophisticated, highly smart, professor, philosopher and priest and one of my heroes. He wrote many books but most of all we adore his talks, for he was a great narrator who could present the entire field of perennial philosophy of East and West in a way that was funny and accessible for every ordinary Jill and Jo.
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Thanks Tim. More thinking is not needed indeed.
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Dear Sarais Var,
My heart goes out to you. Your mother has done the right thing. If the mountain will not come to Muhammad, then Muhammad must go to the mountain.
It is difficult to accept that these new medications are not yet available everywhere to everyone. These products are the result of capitalistic manufacturing in the most extreme form, and for now the manufacturer only provides it in those countries that can and are willing to pay the full price, which has nothing to do with costs of development and normal profit, is shamefully high and an expression of the utmost greed of stockholders.
History learns that after a while, when patents run out, products like this will become available at a more normal and human price point, where also countries like Cuba will be served. Until then, sadly patients will be left alone, or as in your case, have to be inventive and go look for a faster way. I sincerely hope your mother will succeed in her mission. And I call upon everyone involved in this bad example of capitalist greed, to end this immediately and see that all people with cf that are eligible will get access as of tomorrow.
Hang in there!
with love,
Paul