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  • paul-met-debbie

    Member
    July 11, 2022 at 4:52 am in reply to: Has any doctor changed your life?

    Good question. Almost all doctors I had, influenced my life and so are the doctors that assist me right now. Without medical assistance I would not be alive at all right now. I guess the doctor who foremost changed my life was my psychiatrist when I was a young adult. I was not able to come to grip with the transition from living a sheltered life at home with my parents and setting up an independent existence as a student in a big city without them. Dr. Weinberg taught me to relate to the world in a balanced way, based on equality and with confidence. He did this by example, forming exactly such a relationship between me and him. And he showed me how to form relationships with other people on that same basis, something that at home I was not taught at all. To me he was like a second father and mother combined into one person and he taught me how to be my authentic self. The relationship/therapy lasted for three years. He is no longer with us, but after 40 years I still have vivid and fond memories of him.

  • paul-met-debbie

    Member
    July 1, 2022 at 2:16 am in reply to: A (re)introduction

    Welcome back, Luisa! Good to hear Trikafta is beneficial to you too.

  • paul-met-debbie

    Member
    June 28, 2022 at 2:02 pm in reply to: How is your relationship with your CF care team?

    Pretty good actually. I know my cf-nurse since 2002, she is the constant and golden factor in my team. My current pulmonologist is my doctor since a few years, and we communicate very well. He is my third pulmonologist in this hospital, the two before that got promoted away. And before that I had three different pulmonologists in my life in three different cf centers due to me moving around in the Netherlands for jobs and study.

    And the hospital pharmacist is a great help as well. There are more members of the team, but I seldom see or talk to them, except for the dietician who takes care of my supplemental dietetic food drinks.

    I can contact my team any time via phone or email. Mostly through my cf-nurse, sometimes directly. We speak a couple of times a year and once a year we see each other in the hospital (except when too much covid). Also my family doctor and her team (and pharmacist) are very helpful as well.

    The only difficulties that can arise is when other medical specialists are needed that are not directly related to the cf-team, because there still is a lot of separation in hospitals between the different specialties. For instance currently I need a urologist who is not a member of the cf-team. And then the communication is more difficult, because the doctors don’t dare to interfere in each others little worlds. So the urologist puts me on a waiting list, only looking at my kidney-situation which is (for now) stable, but I fear he is not sufficiently taking into account my extra vulnerability because of cf. And then we are at the mercy of the personalities of those involved to cooperate. Which of course is a necessity, for with cf, no medical problem stands on itself and they are almost always related some way or another to cf. In situations like this I wish my pulmonologist (who knows most about cf and my dossier) could officially take the lead and direct and coordinate the other specialists, but alas it doesn’t work that way, they are all their own boss and it takes a lot of diplomacy sometimes to make them work together without bruising ego’s.

  • paul-met-debbie

    Member
    June 16, 2022 at 12:01 pm in reply to: Trikafta and Mental Health

    Jenny, when reading the article I thought of you immediately!

    It is good to know that these side effects are on the agenda now, and that dose-reduction can be a good solution.

    Trikafta has not influenced my mental health as far as I know. Only some light changes in my sleeping pattern with occasional problems of falling asleep in the night. I noticed having more energy, mental and bodily, but I was able to apply this energy in a positive way – more writing, reading, walking mostly.

  • paul-met-debbie

    Member
    June 8, 2022 at 9:42 am in reply to: Bacteriophage Therapy Success Story

    I found a good article by Kelly Todd about the difficulties in patenting phages.

    See https://scholarship.law.duke.edu/dlj/vol68/iss4/3/

  • paul-met-debbie

    Member
    June 8, 2022 at 1:10 am in reply to: Bacteriophage Therapy Success Story
    • This is a promising therapy that has been developped and known for decades in the former soviet union, driven by a lack of many of the antibiotics of the free Western world. Currently, Russia, Georgia and Poland are known centers for phage development and use.
    • I would  certainly consider phage therapy if needed. It seems to be very effectieve, safe, more precise and possibly cheaper than antibiotics development.
    • However, it is difficult to predict if this will be picked up by modern farma industry in our part of the world, since it is very complicated to patent these phages because they are life stock in stead of a chemical product.
    • In this particular case the article is about, I have my doubts though what caused the eradication of the infection in this patient, the phage therapy or the start of Trikafta, since they seem to coincide perfectly.

     

    Thanks for picking this up, Jenny, very interesting!

  • I don’t advocate CF in particular because I don’t identify with it. But I advocate life, of which CF is a natural part.

    I can relate to how siblings can influence the lives of each other. My brother Rudy had CF and he died before I was born, so in a  way I also carry his torch and by living the life, contribute to what he started. Not as a pwcf, not even as a person, but as a feature of the timeless One.

  • What a great picture of Bautista!

    Treatments are part and parcel of CF. I absorbed my treatments in my daily life to the extend that it doesn’t feel like “doing” anymore, it goes by itself. In the course of my 58 years with CF I learned how flexible I can get with this without harming, which depends on the sort of medication. CF is relatively unforgiving in this, but there is some room for maneuvering nevertheless. Knowing the approximate boundaries is liberating. Some doctors are wise enough to know this too.

    I like to do as few tests as possible. I don’t do tests that are for the record only and only accept tests that can have a direct influence on the actual treatment plan. And I prefer to test at home (lungfunction, saturation) and via my family doctor (blood/urine tests), in stead of in the hospital. This way I saved a lot of time and energy. And in case of emergency, my family doctor is closest anyway.

  • I found your Youtube channel, Sicily. It’s great to hear you make music, never stop singing!

    Music taught me to be in the flow of creation. My mother taught me to play the piano when I was 5 years old and I never stopped since. Playing the piano dissolved my notion of ego, time and space into one. Making music is one of my  profound joys.

  • Great story, Rachel. Life is a dance indeed.

    The only excercise I have been able to include in my routine, is the routine itself. I do what my body wants doing. It is fully in tune with its needs as long and because I don’t mess this up with thinking and planning.

    So I happen to find myself walking our dog 4 times a day and doing everything that is required for normal activity. Every time in life that I planned different routines, I was only able to keep this up with will power for a limited time – altho sometimes for years – after which the routine failed. This is because in the end, what the mind planned did not resonate with the needs of the body. If I get out of the way, moving happens spontaneously in the right amount with joy and ease. This is my recipe.

  • This is a shortened version of a Talk titled  “58 years with CF” that can be read on our website here.

    For those of you who want to know even more about liberation and how to “get there”, it’s is all revealed in another Tale titled “Falling Awake” on our website here. And in some of the later tales as well.

    Of course, there is no way to “get there”. When you would enter “Liberation” or “Freedom” or even “Bliss” as a destination into your personal navigation system, it would draw a short line to where you are right now. And the voice would say: “You have arrived at your destination”.

    But still, it is a fun process finding this out for yourself and you will learn from this to perceive reality in a completely different way – in the abundant way it really is. Your person will vanish. But not to worry: there will still be CF, pain, joy, tax-returns, thirst, hunger, lust, love and sleep, just like there is now. But it will end all psychological suffering that is currently coming from this –  that we promise.

    With love,

    Paul & Debbie

  • What a beautiful love story! You clearly belong to eachother and we wish you all the joy in life. Perhaps you two might enjoy reading a Tale about this:

    https://www.parkinsjordaans.nl/downloads/23_Intentions_A_tale_about_three_Love_Poems.pdf

    I never felt the need to hide symptoms,  but out of a care for privacy I didn’t expose my bodily peculiarities either. So, those who didn’t pay attention, didn’t know of me having CF, and those who were attentive, did after a while. It is quite a natural process this way. I have never been rejected for having CF. Sharing intimacy and being vulnerable mostly evokes intimacy and empathy. That is how the healthy human brain works in most cases. Love is reciprocal and embracing in this dance we call life.

  • paul-met-debbie

    Member
    May 25, 2022 at 1:53 am in reply to: Day 19 of #31DaysOfCF: How I Support My Siblings

    What a beautiful account of sibling love!

    I love my two sisters for whom they are, (not) having CF does not come into this. I don’t even think of this as support. It comes naturally from being family. They are different from eachother, so my love emanates in different ways for them, but it is from the same source.

    Then again, I feel everyone and everything is my family and if I can help, helping happens naturally even without the concept of helping, even without the dynamic of helper/helped. I am not searching for situations to be of help,  but  when they arise, helping also arises. When no help arises, this is  accepted also. I don’t feel guilty or proud for this, it’s just how nature works. Survival of the coöperative.

  • Animals are our friends on this planet. They have been assisting our pour species for millions of years doing the hard work for which we are not strong enough, feeding and clothing us (alas) and being great company (yeah!). We are eternally indebted to them. Incredibly so, most Animals are very friendly and benevolent to us. We only seldomly return the favour. Only our pets get what they deserve, our protection, love and gratitude. Most of the other Animals we exploit, enslave or kill and eat.  In the Western world, dogs are often treated reasonaby well, fortunately . They are truly man’s best friend. In this regard, all dogs are service dogs.

    We had dogs most of our lifes. They are great company and adapt very well to our weird human habits and way of life. They even learn our language and are in tune with our emotions. They are very intelligent and wise, much more so than we. It is unfathomable what our dog is able to understand and empathize with. She surprises us every moment. Also, she gives the perfect example of how to live without cenceptualizing, judging, comparing, competing or complaining. She always complies happily to what life presents to us, and never takes anything personally. As long as she can share our lifes, food and love, she is perfectly happy and always shares her love and Total Being with us.

    Caring for a dog or other animal brings out the best in us. It teaches us love, joy, compassion, empathy, and to feel the equality and interdependence of nature. It shows us who we really are beyond our egoic minds: an emanation of Nature, a feature of the Whole. We are not separate, and when we look into each others eyes and in the eyes of Animals, this is most obvious.

     

  • Breath is the force of life. Literally and figuratively.  It is even felt to be the origin of creation in almost all of the stories that are the core of the religions of mankind. The universal principle (God, Dao, Brahman, Atman, Allah, the One, Teotl, Atum) is often intuited and pictured  as  breathing the air of aliveness into the universe, and into the human body. In some languages these words still mean Breath, like in German “Atem”, with the verb “Atmen” and in Dutch “Adem” and “Ademen” respectively. In the Bible the first human is called Adam.

    So integrating the art of breathing in how you live your life, as Katie does, is wise and important. It is what in Hinduism and Buddhism is called Pranayama, which is observing our breathing in silence, without the intention of control. It can make us aware of the silence between two consecutive thoughts. This calms down our running mind and points us to who we really are. It is one of the best forms of meditation and we can do this 24/7 without effort.

    Answering Jessie’s great and fundamental questions: yes and no.

    Having CF allowed me, amongst other circumstances, to go beyond my personality and embrace the impersonal identity of being One with all. This did not separate the disease from who I am, on the contrary. It created the realization that I am not only the body  but that the body is in me, including all the particularities of that body without the need to conceptualize it as “my body” or even “diseased”. The body and its functions are simply what is, they are a feature of Oneness that we all are. I am in that Oneness and this Oneness is in me, like a glove that is it’s own inside and outside simultaneously.  It is what is happening undisturbed  by the separating mind all the time by itself. To every one and no one. This is liberation. We are all this freedom. If we focus on breathing in stead of thoughts about the person, this freedom will embrace us timelessly.

  • Congratulations to ms. White with her election as chair of the CFF!

    Talking about a cure for CF is as old as CF. I am from 1963, my brother who died in 1959 was 7 years old. A cure for CF was a recurrent subject in our family, understandably.

    Talking about a cure gives hope, but should not lead us away too much into the future. People with CF are living NOW and having CF is also conducive for increasing awareness and presence for what Is.

    I remember when being young, I quickly became tired of talking about a cure in the future, and in stead concentrated on being-here-now. This liberated me from feeling trapped in the body and time, and it reduced the illusions of my mind to a point that they disappeared.

    Having said this, of course it is great to have new medication like Trikafta, and lots of research into new medication for those of us still not being helped by improvements like this. All these researchers and the people of the CFF of course envision and imagine and use their lucid brains to find a cure or solution, but they are not dealing with it in the future, but right here and now. Presence is what makes them tick best.

    So, remember: The real cure for CF is being found NOW, not “One Day”.

  • paul-met-debbie

    Member
    May 20, 2022 at 5:12 am in reply to: Sunday Morning (63): Surviving Dark Periods

    * He used the word Brahman, which is Sanskrit for the highest universal principle, the Source of all being. For me, this is Love.

  • Since 3 years I connected to this cf community on cfnewstoday.

    It is a pleasure to share my experience with the disease (1963 build) and to read about the problems and solutions of fellow pwcf. They are all beautiful beings who handle cf in the best way they see fit.

    Reading and writing about cf also helped me to apply the philosophy of nonduality on these subject matters, which even deepened my understanding and realization of this perspective on reality.

    I am grateful that I can share my take on life in this way and contribute to the well-being of all. It is the least I can do after all grace that has been bestowed on me. For me and my wife Debbie, cf has presented not so much as a disease, but as a blessing in disguise for it helped me and her to go beyond the limited and separated perspective of the mind. It’s quite a dance!

  • Yes it must be hard to live in a situation where there is no adequate care available. One can only endure and surrender and look outside the box.

    It reminds me a bit of the story of my brother Rudy, who died before I was born. He had CF as well, and in those days (1952 – 1959) even in a modern country as the Netherlands, not much was known about it. There was no medication, not even pancreatic supplements and only the most basic of antiobiotics. He was wrongly diagnosed at first as having celiac disease and put on a diet of (only!) bananas and milk. Even then he thrived reasonably well, until he contracted the measles for which no vaccine was available at that time.  This soon developed into pneumonia from which he died within 2 weeks. Having the same genetic profile as he, I was so fortunate to be born 11 years later and got much better advanced medical care, which made me dance up until today.

    Healthcare in the Netherlands is well available, and my cf team is great. There are not many frustrations. The only thing I always remember is to keep thinking for myself. The doctors have their knowledge, but I am the only one who feels the body inside and uses also intuition to assess the situation. Working together in that way is a good thing. Knowledge without intuition is abstract and crude, intuition without knowledge is sometimes missing the most recent medical developments. To combine these is conducive to prevent frustration and get the best possible outcome.

  • paul-met-debbie

    Member
    May 14, 2022 at 4:33 am in reply to: Day 12 of #31DaysOfCF: I Keep Being Grateful

    Gratefulness is a precious gift. Living consciously is practicing gratefulness every moment. If we do this wholeheartedly, it goes beyond practice and becomes our first nature.

    Self-acceptance is not necessary. There is no self. There is only acceptance. And even that is an illusion, for there is nothing to accept and no one to accept it. Acceptance is gratefulness. Life can’t not be accepted. It is there, full of love and as love, no matter what we accept or not. We can act in the mind as if this is not true for us, and suffer dearly from this illusion. Then life will be as unrequited love. It will still be there, patiently waiting for us to realize it and comply, fully merge in it. Nothing we can do can change this, we will ever be eligible for life and love. It will never turn against us, no matter what we do or think. It is Grace.

  • paul-met-debbie

    Member
    May 13, 2022 at 1:22 pm in reply to: Day 11 of #31DaysOfCF: Have You Met Cynthia Fibrosis?

    When I was a person, I thought I was in the body and the body was ill. I also thought that I was the one that had to keep the body alive by interfering, planning and caring. This was a lot of trouble and it felt like a curse. But all the time, what actually happened was that everything just happened and went along by itself and conditioned reflexes, and all the perceived actions of the person were an illusion that the mind added to everything that happened by itself, a fraction of a second after it had already happened in the most complete way. After seeing through this, this function of the body (it was the mind) stopped. This was liberating and felt much more true than the previous contraction of the mind.

    Now I don’t have a relationship with CF. It  just seems to be there for the former person because of conceptualizing.  So is the body.  I am neither the disease nor the body anymore, nor was I ever truly.

    The body is in me. The body takes care of itself. There is no doing of me needed or possible.  The body and me are one.

    Things happen to and in the body from themselves but they don’t effect me.  When the body is in trouble or pain, I watch how the body deals with that perfectly. I can’t do anything, but everything is done by and in me without effort, planning or doing.

    The body functions in a certain way as best as it can, until it stops functioning. This is called death. The death of the body is not the end of me. The birth of the body is not the start of me. I am aliveness. I am timeless. I am utter freedom  and creativity.

  • paul-met-debbie

    Member
    May 17, 2022 at 2:11 am in reply to: Sunday Morning (61): From Infection to Inflammation

    Ah yes I remember now, Jenny. This sounds like a good scheme, and more regular than skipping one trikafta every other day. I always try to use medication evenly spread to not confuse the body, so that it can accomodatie to an even situation. Perhaps your scheme is what I will end up with as well. I will keep us posted.

  • paul-met-debbie

    Member
    May 14, 2022 at 4:05 am in reply to: Sunday Morning (61): From Infection to Inflammation

    Good to hear you are having similar experiences with antibiotics, Jenny.

    I remember we talked earlier on the forum about your new trikafta dosing, but can’t find the post and don’t exactly remember on what dose you are right now. Would you mind enlightening me? I am currently trying a lower dose too, which is every other day I take only 1 trikafta in stead of 2. But so far this didn’t change anything yet, my eyes are still as sensitive. Fortunately, my airways still feel as good as with the full dose.

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