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Is This Real Life?

Have you ever seen that YouTube video where the kid just had dental work, and is asking, "is this real life?"  That's what I'm asking myself right now.  I am considering getting a second opinion on all of this new stuff.  New tumors usually mean surgery, but I'm having to jump through hoops with specialists to get everyones opinion before we can do anything.  I also feel like I'm doing all the work here.  I am gathering all the information that I need to go into appointments educated, so I don't have to rely on someone to remember to explain what is happening, I'm scheduling appointments and calling back 10 times to make sure they are on top of a referral or letter.  I also keep track of which parent can come to which appointments, based on work schedules and general availability.  (That part is OK, the rest is not.)

I've gotten to a point where I don't fully trust anyone with my care.  So I put myself into the position of educator, patient advocate, secretary, and researcher. You would think after doing this routine for each new tumor, after 3 surgeries and a plethora of other issues, these doctors would be on top of it.  I get the feeling that I am no longer an "interesting" patient, and just a pain in the ass.

I was looking at a doctor's profile at Mayo Clinic, and found out that he diagnosed himself with MEN-1 while finishing his medical training.  Maybe someone with experience of self diagnosing would understand my need for control. Maybe I would be able to trust someone like that who knows that he saved his life through self diagnosis as I saved my own.

I know I've gone on and on about this, but I just can't believe this is my life right now.  Who knew that instead of graduating college and going on to medical or PA school, I'm still fighting for my life, and a correct diagnosis.

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