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

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[quote=Anonymous]So tired of dealing with DD's medical problems.  Need some encouragement to go at it again.

We spent four and a half years trying to get a diagnosis for her problems and then within a month got a diagnosis of condition A and unrelated condition B, both uncommon and both considered non-minor health problems for which treatment can be tricky.  I am almost embarrassed to admit that after diagnosis I counted up all the doctors we had seen to get to the point of diagnosis and it was over four dozen, the majority of whom more or less told me it was all in her head.  She also has three other unrelated medical conditions, but they are common and treatment protocols are well developed.

It took another year to get A and B under control and there has been a year since then in which she can actually live a life and medical stuff is just the occasional check in.  We did just that yesterday for condition B this week at JHU.  Two bothersome symptoms she has been managing that we thought were part and parcel of condition B they told us were not and point instead to a possible complication of condition A. Treatment could require major surgery.  And they suggested she possibly has another uncommon condition, inherited, that would require a genetic test to confirm and which needs treatment to avoid long-term complications if she has it.

She is now in her early twenties and has been a real trooper since diagnosis and treatment.  Things have been going well.  But now once again we are faced with lots more investigation and more things wrong.  So dispiriting.

How many damn conditions can one young person have?  I am in my fifties and don't have one thing wrong.  So unfair!

The earlier ordeal of getting a diagnosis and treatment has left me spent and exhausted, but I know I just have to suck it up for a new round.  I really want to crawl into a hole and pretend the doctors said none of these things and all this new stuff will all just go away.  Part of me thinks now that doctors no longer think it's all in her head they are simply making her an even more interesting patient than she is.

Buck me up please!  Need to get on the phone and start making appointments for all the tests and new specialist visits JHU recommended.  (And please no comments she should be handling herself--she manages her three more common conditions entirely on her own and has more than enough on her plate dealing with the symptoms of the other two conditions and taking a heavy STEM course load.)[/quote]

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