paul-met-debbie
Forum Replies Created
-
My doc prescribed Artificial Tears and antihistamine eyedrops.
I will try the Tears first, because they are the more natural solution. I will keep you posted about the results.
Happy crying,
Paul
-
That sounds almost self evident to me, why didn’t I think of that? Thanks Tim, good suggestion. I will ask my pf to subscribe it. I thought also my tearducts might be blocked or withered away from 58 years of not being used enough because of cf-draught. (and I am too happy).
-
Ah, nice topic. Pfff, long time ago that I was in hospital, I always refused to get in-house treatment for IV antibio, so they sent me home with a portable system. Saved me dozens of admissions.
But I had my appendectomy in 2015 and hence was admitted for 5 days. Only visit I wanted was from Debbie, and her brother came along one time which was nice. We didn’t even tell other friends and family until I was home again. And Debbie did not even have to visit in the beginning, because after the surgery she refused to leave me alone and managed to charm the head of the ward into putting an extra bed in my double room (which I watched in awe). So she could watch over me, which was no luxury because in the beginning they gave me the wrong painkillers (oxycodon, you know …) that made me suffer from short episodes of respiratory arrest, from which I would awake every time, only to sink back into semi sleep and have another episode. No one came to help, but after Debbie reported what she saw happening they changed my medication into something more suitable.
Anyway, every morning after we had breakfast and coffee in the hotel room, sorry hospital room, Debbie took the car and went home for a couple of hours to let me rest and take care of the house, have lunch and diner, and returned late in the afternoon shortly after my diner to stay the night. It was very cozy and we had fun. No other visitors required.
When younger, around 10 years old I think, I was admitted several times, and my parents and sister came to visit which was nice, but as a young kid I was always very upset to see them leave again, so I wonder what was worse, being alone or having to see the visitors leave time and time again.
Later I mostly enjoyed family to visit me, but never asked friends or other acquaintances. Hospital days are filled with weird protocol anyway, and it is nice to have a rest in between all these activities. The beds are mostly not suitable for good sleeping either, so I had to catch up sleep over day. And food is the worst, so you get weaker and weaker every day, it is always a race against the clock what will happen first, starvation or discharge. So far I managed to get out in time.
-
To Throw a Spacko! Thanks for this expression Tim, I didn’t know it and couldn’t even find it on the net. Does it have something to do with being “spastic” from anger/amazement? aka to throw a fit, flip one’s lid, blow up, hit the roof, hit the ceiling, have kittens (! nice one for you), combust, blow one’s stack, fly of the handle, flip one’s wig, blow a fuse, go ballistic?
Anyway, I would think both the cardiologist and the endocrinologist are equally at fault here and they should throw a stone at themselves.
This is typical for what happens because of the fragmentation of specialist healthcare in general, and in CF care in particular. A medicine that is commonly used for diabetes (and hence prescribed by the endo) turns out to be effective for heart failure (and hence is on the field of the cardio). And neither of them picks it up for three years, perhaps thinking that the collegue will do it and/or afraid to ask about it and overstep some imaginary borders of competence. This stresses my appeal for a CF super specialist who coordinates the care and medication. The current system of CF teams does not work sufficiently at all.
-
Debbie and I don’t have kids of our own, but in a previous life I have some experience. When my first wife had adopted a little baby boy and was having some difficulties in adjusting to this situation, I (between relations and looking for temporary lodging) moved in with the two of them and helped them out. Which was an interesting twist of nature, because it seemed because of our not having kids that eventually our marriage of twenty years had broken down. I will not mention his name for reasons of privacy, but let’s call him Bram. I helped him learning to walk, talk and enjoy his life. We had long walks together with the two dogs of the house and I showed him how to appreciate nature. I took him everywhere I went, doing the weekly shopping, cleaning the car, visiting my sister. And Bram loved everything we did together. It was a precious experience for the both of us. After about two years, when Bram started going to school and seemed to have settled well enough with my first wife, time had come to say goodbye again and leave them to themselves. We are still in contact.
Regarding my health, Bram was still very young (between almost 2 and 4 years old), and the word CF didn’t happen. He learned matter of factly that I took pills with my meals and nebulized twice a day and coughed a lot. He was mesmerized with the “cold steam” that came out of the apparatus and always wanted to feel this on his cheek. And Bram knew that my pills were only for me, to make my belly feel fine.
There was more experiencing in this process than talking or explaining, and I think that is the way to go generally. Kids don’t separate what they see from who they are, things just happen in a certain way. If the adult seems to be okay with that, so is the kid. Only later when they have learned to think, separate and worry, when they learn about time and future, problems may start. It is important to watch that process carefully and put it into the right perspective every time it becomes problematic. Because in the end, nothing is problematic. Not even the question about what we call death. Anyone can die every second from all kinds of causes, CF is not special in that. It is just what happens. It is life and love.
-
That is exactly the problem.
Tim, are there any specific tests or examinations or treatments or strategy you can think of yourself that you would like your cardiologist to look into or to perform? Your theory sounds almost self evident to me, but perhaps is too much for your doctor to accept. When you present it as small practical steps he might be more inclined to look into it. Often when doctors feel helpless, they hide behind textbook knowledge. What would you have been willing to do as a vet in a situation like this, when a dog owner presents his pet to you with strange comorbidities and a theory of his own, that is not in your textbook or education? How would he have been able to make you overcome your position and go along to assess whether or not his theory holds ground? Try to find out this for yourself and then apply it on your cardiologist, try to break through his passivity, try to evoke his curiosity, give him something to look into in a way he is familiar with. I gather you will not be satisfied with him to only acknowledge your theory, you want him to do things. So bypass the convincing, the theory, and think of something to make him do things you deem useful anyway. -
Very interesting topic, Jenny, thank you for sharing your predicament. And I hope that soon your health will clear up. It might clear up even better if you look into what might be happening here.
What comes up in my intuition is “cognitive dissonance”. Perhaps you could look into this, not as a cure, but as an analysis of what happens in the mind. As far as I understand it, it is about two (or more) conflicting thoughts, values, behaviours or attitudes and ways of the mind to navigate these. In your case one of them certainly is: “My health is the most important thing in my life”. Another one could be: “I should always be on target with things that need to be done”. Clearly, these cannot be satisfied all the times together, and certainly in times of declining health this becomes problematic. So this will lead to frustration and guilt, feelings of inadequacy and failing, occasionally interspersed with little moments of victory and satisfaction.
Generally speaking this would result in a balancing act between doing the important things and taking care of your health. As long as this is feasible, you feel satisfied and happy. Your health will be “okay” (but could be better in your thoughts) and the chores will be ‘reasonably on scheme” (but there is still a backlog). And temporary disbalance would be tolerable, in the knowing that it will be resolved soon by either doing more healthcare or doing more chores. This is what most people do because health or being on target with chores or both will eventually be restored and happiness will return, it is after all only one pill or one chore away and within reach. And all kinds of beliefs can be created to justify a temporal or more permanent disbalance as well. The mind is very creative and thoughts are malleable because they are not bound to what really is.
The diabolic element in this particular situation with a chronic disease is, that your health situation is not only dependent on what you do or let be, what you can control (in casu the amount of work you decide to do or not in order to honour your health situation, or the amount of attention you put in to improve you health directly by therapy and rest), but that on top of this it has a completely independent dynamic that is much stronger and fully out of your control.
So, even if you take care of your health well, it might still decline spontaneously. Or sometimes even while not taking care of your health, it still stays stable or even improves despite you being overactive. This doesn’t stimulate the trust in personal healthcare and might lead to doing things contrary to health. Thoughts like “I now feel great, so lets take the opportunity to do a lot of chores, because tomorrow I might feel not good enough for doing this”. Or, “I feel terrible but there is nothing I can do, so I might as well do some chores anyway”. And many other thoughts or convictions might arise. You have to take a close look into these thoughts and behaviours to identify the dynamic that is going on.
But in the end, there is a more effective method, which is honouring and complying and surrendering to what really is, without nurturing thoughts to the contrary. What is really happening here, is that you have a separated mind. There is no union between mind and body. The mind should be a servant to and feature of the body, but in your case (and in that of most people) it has become a self-serving master. It should only be a tenant in the house, but it has become the landlord. It is belligerent in stead of peaceful. It calls the shots, no matter what. It determines what has to be done, why and when. The fact that the body is out of its real control, is most frustrating to the mind, but it has found a creative but perverse way of dealing with it by randomly pushing the buttons of our feelings and sensations, learning from this what buttons work best to assert itself as a separate entity and interfering with the natural processes. If health deteriorates, or if things are not done, it produces feelings of guilt and deficiency in order to assert its own importance and existence in a passive way. I feel, therefore I am. I think, therefore I am (Decartes). Of course, unknowingly, Descartes was only describing the mind itself and not, what he erroneously thought, Being. This is because he was not realized and could not perceive anything beyond the mind. The mind doesn’t care whether it or the body feels terrible or good or whether it thinks pleasant thoughts or worrying thoughts. With both it is equally satisfied, if only it feels that it exists and that it makes you feel that you are It (identification). It makes you think that it is capable of preserving the balance between duty and health, and when failing in that it makes you think that this is your fault. It doesn’t really think that health or chores are the most important things to take care of at all! This is the real cognitive dissonance that is going on. It only puts these thoughts into your consciousness to assert itself and give itself some impossible task to do that never ends, because it then feels immortal itself.
The mind of course is itself completely impersonal, it is just a self-producing process of separation happening in the brain, that is neither good nor bad, malevolent or benevolent. But in fact, in those thoughts it is hiding itself, and all the while it only thinks that itself is the most important thing, and it really doesn’t give a shit for either health or chores, as long as it feels that it exists in any way possible. The mind can even make people who think health is the most important thing in their lives, to commit suicide (“health is the most thing, but if I can’t have this, I’d rather die and take the body with me”).This is because is has been put in the position of landlord and it likes to maintain that status. For the mind, this is a win-win situation, For the body however, and for the being as a whole, clearly not and it produces a lot of suffering, imposed on and endarkening the innate Joy of being.
Dissolving this separation between mind and body, between what really Is and what the mind makes of it, is the only real solution. For this, all dissenting convictions should be dismantled. The thoughts about health and duty will (have to) vanish, the apparent conflict will be seen through as a play of the mind only. The thoughts of “I, Jenny, woman, mother, partner, sister, aunt, niece, American, animal lover, spiritual or religious, healthy or sick, meticulous or sloppy, intelligent or foolish” and whatever more identifications have attached to this “I”, will have to vanish. This is not a loss (only to the mind), but an enormous increase of true Being. This will lead to realizations, more realistically. Like “My health, chores and me are one”. “Everything in life is equally important and unimportant, the only thing important is life itself and it will take care of itself by itself”. “There is no control about what happens with health, but whatever happens, it will be alright”. “Chores will be done or not, there is no doing or planning necessary on my part, I will find myself doing chores on the right moment, and on other moments I will find myself resting”. “Health and chores will take care of themselves, I don’t need to interfere, the body will know what to do and when, if left alone and not disturbed by thoughts”.
In realized Zen Poets, this will produce poems like: “New pond, no sound of a frog leaping in”, or expressions of reality like: “Sky above, great winds” (both from the wandering monk Ryokan). In Jesus this produced sayings like: “The kingdom of heaven is within you”. They all were simple people like we, who discovered the reality beyond the mind and never went back. We all can do this, it is not special of difficult if we really want it and are sufficiently fed up with the reign of terror of the mind, pushing us about, constantly creating mirages and illusory predicaments for us to navigate and solve.
Of course, this will require (and produce) trust in whatever happens and seeing through the game of mind, the virtual reality it has imposed upon what really is. This trust will come when zooming out of the situation and realizing that 99% of things that have happened in your life so far, were out of your control and yet, you find yourself exactly at the right place where you seem to be now, and you have no clue how it came about, and you could not have done it yourself in your wildest dreams. In fact, you didn’t do anything yourself, things happened, including the illusory perception of “your decisions”. This is the miracle of life and the cosmic causality that takes care of everything in an unknowable way. It happens no matter your “doings” because your doings are already incorporated in what happens. Whatever you do is perfect and is a feature of the whole. What is meant to happen, will happen despite of your efforts to prevent it. What is not meant to happen, will not happen despite your efforts to bring it about.
So, briefly coming back to psychology: Every mental cognition is dissonant with reality as it is. The mind Is dissonance itself. Cognitive dissonance is the state of the human condition. Reality is not what we think about reality. What can be said about the Dao, is not the real Dao. Every personal thought about “the world (sickness, responsibility)” is innately dissonant with reality, with oneness, because it creates an artificial and illusory separation, where we find “ourselves” at one side, and “the world” on the other, and think that the world is happening to us. It really is not. We are the world, there is no separation, we are happening as one. Dissolving this separation is dissolving all problems at once, which is different from trying to solve problems (what the mind thinks it needs to do). Nothing will be perceived as a problem anymore but only as “what is happening”, not to an individual “I” but to and in and as oneness itself.
There is a lot peace and joy in that, you know. It is not a problem that we are blown about as leaves in the wind, because we are the wind as well. To realize this is the ultimate goal we have in life. It means truly seeing that there is no nothing to achieve, only the knowing that there is nothing to achieve. Being part of that cosmic scheme is our highest form of being. It is a completely impersonal experience of life, but ever so intimate and rich, not cold or detached but fully on and in and as the caring arms of Oneness. In that, taking care of health and chorus will happen naturally without any thought interfering or perceived conflict arising. And than what is supposed to happen, will happen by itself. So, don’t worry, just let go of thoughts and watch what happens in amazement. It is clearly a miracle indeed. And no matter what you do or think, this is what will happen anyway. You can let it happen in peace, or let the mind be ad odds with it and suffer. It’s your choice really.
Hua Mi
(fka Paul)
-
The great Dutch poet Hua Mi in 2019 wrote this, to capture the entire process that seems to happen, and as a self-erasing answer to what his name seems to question:
I am That
I am that which knows
when and where
the shadow and the tree
cause each other to be
the knowing that knows
when and where
there is no tree
no shadow and
no me.
(c) Hua Mi (2019)
-
-
Very true indeed Tim. CF is working all over the body in many systems in ways many of which are not yet known.CF care is currently organised in little islands of expertise, that are scattered and incomplete. Often they do not work together very well either. There needs to be an interdisciplinary approach both in treatment and in research. The focus on only the lungs and digestion, however understandable from an historic point of view, must vanish. Perhaps we need a real super cf specialist, who is proficient in all the systems of the body that can be affected by cf. This could be a specialisation within internal medicine, the cf-internist. And under her suoervision, the normal specialists would work together in a team to optimise treatmemt for each individual pwcf in the clinic.
-
We experience two seasons only. One is “Summer is coming”. This starts as soon as the fresh leaves come out, so already now. The other is “The days are lengthening”, which starts 22nd December. It happens that these two seasons in our experience smoothly connect.
Healthwise,I like the outside air to be around room temperature. So between May and September is optimal. But when colder, we accomodate with clothes, shawl, hat and gloves.
Wind, Rain, Sunshine, Clouds, we love it all. It’s called weather. Not fond of ice though. The slippery kind that is, not the Italian.
And mud? Well, it’s soil after all. It is what grows everything. -
Ah yes, indeed, a very good article. And your being too busy is a great barrier.
I didn’t experience this barrier until very recently because I always found the time first to do what was necessary for my treatment, and than do the rest. Which meant rising extra early to do nebulizing before going to work etcetera. In those days, I only skipped one session of nebulizing in 40 years, which was when being delayed on a flight back home from holiday and only arriving home at 5 a.m. in the morning. I just went to bed then and skipped the morning routine (not my pills though).
But recently, since Kaftrio, nebulizing seems to be more of a habit than a necessity. And having so much more energy means that there are myriad ideas popping up in my head of things to write about. Since starting Kaftrio in August, I wrote 15 new Tales, the first 15 Tales took me 10 years. Just to indicate the vast difference. So, already twice in those 7 months, I found myself sitting at the laptop early morning, right after the first coffee and even before breakfast, to drum down my thoughts on the screen. And around noon, when the first draft was ready, I realized that I completely forgot my nebulizing. Which in a way is a nice experiment as well, for that way I found out that skipping it didn’t cause any problems during the day. Not that I am skipping it now for good, because forgetting once is perhaps different than stopping with it permanently. So, I am going to start my morning session in a few minutes right after finishing this comment.
Debbie and I even had to find some new way of getting my attention away from the laptop when needed, for when immersed in writing I am totally unconscious of the rest of the world and Debbie asking me to do this or that (walk the dog, make food) didn’t come through at all. Which was a bit difficult and frustrating for her to watch happening. Now we found this other system, in which no questions are asked, but whenever she thinks time is there, she just walks to me, sitting behind the screen hypnotized, give me a little sweet shake and pulls me back into reality again. This works great, and I immediately click back into the world again and go walk the doggy, in a way feeling a bit liberated as well from the pull of the mind.
Ah, there is Debbie calling, coffee is due. Wow, not even a shake was necessary. I am improving!
Bye now.
-
Yes a lot has changed. Sputumproduction is almost non existent since Kaftrio. I still do my nebulizing twice a day, more out of habit than necessity. Nothing comes up.
Even my only exacerbation in december 2021 produced only fever, no sputum. Weird.
I managed to scrape some sputum from the bottom of the barrel and it turned out to be cultureable even. Some weird bacteria that I had never hosted before. Achromobacter Xylosoxidans – and a lot of it. My doctor at first thought it not necessary to treat, but because the fever persisted we started 3 weeks of bactrim and it cleared up. There was also a little bit of staph. aureus. So always hard to tell which beasty causes the symptoms. Since end of December I have not taken any antibiotics. Before Kaftrio I had a lot of sputum and continuous amoxyclav antibiotic, but never any growth in the cultures. Only dead stuff.Later I read an article in which this Achromobacter was described as increaslingly posing a threat to pwcf. So I was glad we knocked it flat.
This is a bacterium that mainly florishes in an aquatic surrounding, so it might feel happy in my now better moisturized lungs? I will keep an eye on it. I am due for my 3rd bloodsample for liver enzymes after starting Kaftrio and then I will also have a new sputum culture made. Liver is doing well fortunately. -
Thank you dear Jenny for contributing and finding these fine heart felt words of compassion and truth.
J. Krishnamurti, indeed one of my favorite beings and philosophers. He had a very clear and empty mind and a lot of true, transcending Love. Not many understood him, but those who did are the richer for it. -
Yes indeed Jenny, this column of Nicole is very good indeed and it whistles a tune for me as well.
My CF community: this forum! I don’t know any other pwcf. I never got to it in the Netherlands and since I found you guys&gals I don’t need more.
I joined 2019, to be precise on the second of April with this answer in the forum:
https://cysticfibrosisnewstoday.com/forums/forums/topic/when-should-talk-about-our-cf/
Since then 23 postings followed in 2019, 96 in 2020, 66 in 2021 and so far this is my fifteenth contribution in 2022. And I wrote some Tales for the cf community as well, they are on our website.
So, I have been rambling on quite a bit I fear. Oh, and I forgot the Sunday Morning column I started in 2021, just today writing my fiftieth edition.
So, that it the extend of my involvement. You are my only witness and I appreciate very much the freedom that this forum provides to just post about anything that is on my mind. Or on my not-mind as the case may be. Thank you! I hope to be at some service with my words.
Paul
-
Indeed, Tim! And what does it mean to be diseased? Aren’t we all suffering from the processes in the body that make it deteriorate and function less and less well? Disease and health are labels in the mind only. We are all just alive and dealing with all the needs of the body all the time to keep it running as well as possible. Calling something a disease is in fact creating the disease.
Fascinating subject, Jenny! We might as well organize a rare health day. Would it be any different? Just wondering. Or a rare life day?
For me, it is all a question of the art of living. How to deal with all the challenges in a way that keeps the mind from resisting what is and to fully surrender to what life presents as. When we take care of this first, the questions of disease and health dissolve in an instant.
-
LOL.
-
We threw a laughing fit reading this great story! Thanks, Tim.
-
Great news indeed! Let’s hope the missing 10 will get access some how too, albeit by way of trial and error.
-
Wow, that is indeed important Tim. Since 2019 (DAPA-HF study by McMurray et al.) it is known that added SGLT2 inhibitors (10 mg dapaglifonzine daily) have good results in case of heartfailure with HFrEF (LVEF <40%) indeed. Recently this is also deemed useful in case HFmEF (LVEF between 40 and 50%). The DAPA study was a large one, 4744 patients were included of which half were on placebo and half on dapaglifozine and the results had a medium GRADE value and a relatively low NNT of 20. It seems a good thing to try and watch, indeed there are some unwanted effects to be monitored, especially in patients with diabetes.
We sincerely hope for the both of you that Reva’s health and well being will improve from this!
-
Thanks Tim!
Food for thought indeed. Thought for an empty mind is like food for an empty stomach. And fasting is not unhealthy every now and then. It depends on which thoughts are involved. When we fast on the thoughts of “I, Me, Mine” , there is more space for thoughts of “This, Here, Now”. Like food, it is all about the quality of the stuffing. Let’s eat healthy stuff and think healthy thoughts. Mens sana in corpore sano.
-
Thank you, Jenny!
-
When reading this reply, please disregard the strange < signs > that seem to be there. They are all illusions as well … just disregard them, they are the thoughts of the computer only.
-
Ah, but I don’t think we differ at all, Tim. Of course there is disfunction in the body. And this causes dis-ease. This can be from the normal ageing processes of deterioration, or by some special more urgent causes. And we would be unwise to deny this and not treat it as best as possible. But even on this level it hard to determine a clear line between health and disease. There are broad margins and it seems more to be a gliding scale than a clear cut. For instance, many people are in dyspnea when oxygen saturation gets below 92%. While others (like me) can tolerate 85% without feeling uncomfortable, except for the happening of heavy breathing and more rapid heart beat. Many signs of disease are relative and personal.
What I was talking about is the other level of dis-ease, the suffering in the mind, the thoughts about the disease that cause an additional and completely unnecessary and avoidable trouble because we resist what happens to and in the body. In this respect, we are all hypochondriacs, adding a world of illusions to the bodily discomfort and disfunctioning by naming it, taking it personally and suffering from that illusion, in stead of complying to it without labeling it.
Recently I talked with Fred Davis, a well known nondual philosopher. We shared our perception of having an illness (his body has neuropathy, so do I).
I said to him, and he agreed: “<span class=”style-scope yt-formatted-string” dir=”auto”>The body has cystic fibrosis and neuropathy. It’s the doctor’s story. On his level he is right.</span> <span class=”style-scope yt-formatted-string” dir=”auto”>So the body takes the pills, does the therapy, gasps for air and feels pain. And laughs and Loves a lot. </span> <span class=”style-scope yt-formatted-string” dir=”auto”>It’s not my story though. No stories left. </span> <span class=”style-scope yt-formatted-string” dir=”auto”>It all fell away when reaching 39 years old, the moment the mind thought it had beaten Chopin (1810-1849) and lost all of its targets, no agenda left. Nothing came after but stillness and space.</span> <span class=”style-scope yt-formatted-string” dir=”auto”>And my darling wife Debbie appeared to the stage – oneness fell in love. Now the body is 58.</span> <span class=”style-scope yt-formatted-string” dir=”auto”>My motto “The four Seas”: don’t Compare, don’t Compete, don’t Complain – just Comply. Nature is innately Complete (okay, the five Seas). Not perfect, but complete. </span> <span class=”style-scope yt-formatted-string” dir=”auto”>Life takes care of itself in the optimal way. I wouldn’t change a thing and could’t because the “I” has left the building. </span> <span class=”style-scope yt-formatted-string” dir=”auto”>And complying happens without doing.”</span>
Perhaps this enlightens my perception on the word and levels of “Dis-ease”.
And recently I read that the frog story seems not to be true. Another illusion of the mind that loves telling stories about reality in stead of realizing it fully. If you would put a frog in boiling water (please don’t) he will jump out immediately if he can, and otherwise dies on the spot. And if you put a frog in cold water and heat it up slowly, at a certain point he will start to feel uncomfortable and jump out at all the same. It has been tested and retested. Nature can not be fooled that way. Only our minds can.