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    • #16165
      Bailey Vincent

      Yesterday I posted about some new symptoms of mine that I’ve never experienced this strongly before (perhaps on and off throughout the years, but never this much at once), and the many questions it’s raised thereafter.

      My team wants me to see a rheumatologist and I have dabbled with this dalliance before. Early last year, I saw one at their urging via Telehealth, but it was quick and frenzied, and I was quickly distracted by medical matters that seemed more pressing thereafter.

      I let it fall by the way side. The same thing happened with a rheuma maybe two or three years prior, and probably a few more years before that. I’ll have on appointment. Realize that it doesn’t seem “urgent” enough for whatever else is going on at that time, and it’s the first thing to fall by the wayside.

      I hate to say it: but when balancing work, kids, and staying alive… Sometimes I truly cut corners.

      Today’s Question, before I dig into this subject a little more intimately (tomorrow), is: What doctor do you cut from your life the quickest, when life feels impossible?

      I go once and then never again… so this makes me wonder: Why do I disregard this line of medicine so quickly? Is it because it doesn’t seem “relevant to CF”? Or because I need to find the right one and get educated?

      Is this just me or has this happened to you before too?

    • #16166
      Paul met Debbie

      I know what you mean, and I have this feeling with all extra doctors. I prefer to keep it down to only my pulmonologist and his nurse-practitioner (she is great) and my GP. It just becomes too important otherwise.

      Once I visited the neurologist for neuropathic issues, lots of tests, no cause found, no cure known. Even the intestinal specialist I don’t visit regularly (although she is part of the team). Nor do I visit any other member of the cf team. I can feel my joints and muscles ache at the strangest moments, and my ribs contuse several times a year from coughing or just turning around in bed the wrong way, but going to a rheumatologist has not occurred to me. I design my own physiotherapy and take nsaids to keep me afloat.

      I prefer to take my complaints, aches and misfunctionings all in a stride as things that belong to life and my body, and live with it just as it is. If I would consult a specialist for all of those issues, I would need at least 3 more. Cure it myself or accept it, that’s my motto. There are exceptions of course (appendicitis for instance). One has to know what needs to be solved and what is to be accepted or will solve itself with time. I read a lot about ancient Japanese and Chinese Zen monks who lived in nature, begged for food, always hungry and cold in winter without any medical assistance. It’s remarkable what they could put up with and still grow old relatively in one piece. We are so pampered in comparison and complaining about every little thing. Of course they didn’t have CF and one doesn’t read about the ones that passed away early, but I have already missed the opportunity to die young anyway.

      This wisdom grows with age, at the same rate as being stubborn. I consider dealing with the modern medical system as a civil form of torture. There is a lot I can endure to prevent this or keep it as small as possible. That is not to say that I don’t appreciate the 2 doctors I have very much. But enough is enough.

    • #16167
      Jenny Livingston

      Bailey, the balancing act you describe is all too familiar to me. I, too, tend to cut corners, especially in regard to things that don’t seem very pressing. The dentist? I once went six years without going, and I’m lucky if I go once a year now. The gynecologist, a “primary care physician,” or anyone outside my set of biggest and most immediate needs is just… sometimes too much work to worry about seeing.

      I know, I know, sometimes these maintenance appointments can be important, and I understand that there might be someone more qualified to treat certain issues (for instance, a rheumatologist). But in a world where there is so much to do and balance and accomplish (as you well know, sometimes motherhood alone leaves little time for anything else), some things definitely get put on the back burner.

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