Reply to Help psych me up to reprise medical warrior mom role (Sorry--long)

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[quote=Anonymous][quote=Anonymous]Unfortunately this is a common pattern with a rare/complex medical condition -- it sprouts subconditions and sub-categories of conditions.  A diagnosis isn't static and neither is a medical condition.[/quote]

OP here. For years all we wanted was a diagnosis.  And then we got one, we realized that this was not nirvana.  Another long period of trying this and that to get a treatment that restored something like a normal life.  And you are right: now we are on stage 3.  I don't see the main diagnoses changing--they are pretty much all lifelong chronic disorders--but you are right about the sprouting.  Didn't anticipate that--our happy little bubble burst this week with this new realization.

As to advocacy--very important and DD has become much better at it the more she sees me do it.  She even once disputed what a doctor was telling her by pointing out test results that didn't support his view.  A proud moment.  I am still with her for the two more complex disorders and definitely for the long haul schlepping.  She hasn't got a license yet owing to epilepsy, one of the more common disorders she has.[/quote]

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