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    • #18065
      Jenny Livingston
      Keymaster

      What does it really mean to be rare? We are kicking off Rare Disease Day with “A Window into Rare,” on Feb. 28 at 2 p.m. CST/3 p.m. EST. This panel discussion will feature patient columnists Paris Dancy, Michelle Gonzaba, Claire Richmond, and Sherry Toh, who will chat with fellow patient advocate Liza Bernstein about awareness, advocacy, mental health, and more. Register now for this live event and join the discussion via a Q&A taking place during the event.

      While not CF specific, there may be some here who are interested in joining this event. Register here!

    • #18076
      Tim Blowfield
      Participant

      What is rare! Yes my wife is – she is the only person in the world married to me. But she is the only pwCf in Australia with the compound heterozygous mutations G542X and R75Q. Despite the US CFA listing the latter as not causing it there is no doubt she has CF. And the faulty choride transport affects the  electrolyte balance in more than mucous and sweat. That intracellular electrolytes are abnormal in all her cells and organs is the most likely reason she has not just lung and bowel disease but also hypokalaemia, endocrine (both Adrenal & Parathyroid), renal, heart, muscle  vascular disease and probably more. One cannot have so many co-morbidities without there being a single cause to at least most and the faulty Chloride transport seems best to fit.

    • #18080
      Paul met Debbie
      Participant

      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.

    • #18081
      Tim Blowfield
      Participant

      Disease – what is it. In its simplest form Dis = lack of or missing , Ease. I differ with you Paul, labels they may be but the disease is real. calling something by the label ‘a disease’ is recognising reality and categorising it so it can be better understood. An elephant standing on your foot would certainly cause some dis- ease. When he takes it off – relief! But we generally use the word in a slightly more restricted way referring to sickness. Yes there is degeneration but it is there whether we accept it or not, whether we recognise it or not. We can deny it (too often with dire consequences) as many men do but that does not mean it is not there. Yes it could be ‘all in the mind’ but there still is an issue there. The hypochondriac need help and understanding. Too many are dismissed as such and later found to have real problems. Too many are like the frog, not realising the danger as the water gets hotter and hotter till too late – frog is boiled.

      • #18083
        Paul met Debbie
        Participant

        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.

        • #18084
          Paul met Debbie
          Participant

          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.

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