does this disease ever STOP changing?

New year.

New clinic.

New specialist

New appointment.

Waited a long time for it. But once it became ramped up from routine to urgent a little bolt of fear lodges.

Once it’s in the “within days” section of my head that small fear niggles and niggles.

New specialist.

New uncharted symptoms which don’t fit me and my Chiari.

But DO fit me and some pretty shite “google doctors” ideas. The problem is am NOT stupid enough to be overthinking until now.

But now….

I need to maximise the benefit from a new specialist. NOT with a new case but with ME. A complicated patient with so many DOTS that an interested specialist could JUMP up to join.

I many sure I want the worst answers. But maybe the worst would be an ambivalent, disinterested and unconcerned specialist.


  • Please read me.
  • See how desperately I need to make this appointment a new pathway or tangent to my existing health.
  • Please read my genuine appeal to you?
  • Vulnerable? You can’t describe that much.
  • Please see me as open and frightened as I am. This is my life. Please treat it caringly.Β 
  • Progress?
  • Fatigue- OMG fatigue For me and my autonomic nervous system
  • My hypoventilation
  • My new BP
  • Oh and my sudden amazing ballooning body which eventually became fluidy lungs and tubes. Not normal asthma and not asthma at all as I recognise it! Is that autonomic?
  • And I MUST work on channeling know my condition but not arrogance. I am worried. – ironic. A few years ago a different me thought the arrogance only applied one way. In a world of doctors confined to silos I CLING desperately to the outside the box thinkers who I have and trust.
  • Must try to make him one of that TEAM.
  • Another set of fresh eyes on the rareties of conditions I own.
  • But not beginning at zero- as I was there for long enough.
  • Please just don’t let it be THAT one.
  • And please let me get a GOOD ethical investigation underway.
  • Progress
  • You have my complete faith.
  • Am at your mercy. That does not feel normal.
  • Hx


  1. Okay Helen, just breathe. In and out in and out and relax. This could be the answer to prayer so choose to see it that way and make the appt. Nothing has to change unless you say yes to it. So go see what they have to say and offer and breathe, slowly, in and out, in and out. May the Lord wrap His arms around you and grant you discernment and the doctors wisdom. Love and hugs, Natalie πŸ™‚ ❀

  2. πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™ I can only offer prayers but I can offer many of them.

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