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[IPp] RE: our worst visit ever-thanks guys

I just want to thank everyone who responded to my email.  It is so 
encouraging to talk to people who really know what it feels like.  One thing 
I guess I didn't mention is that Rachel is currently on a pump.  She is on 
the Disetronic and it's been fine, but at our last visit in June our endo 
said that one cause of her higher numbers was due to the Celiac and the 
differing rate of absorption, compared to when her bolus insulin is 
delivered.  Her pump apparently does not offer an extended bolus and the 
Deltec does.  Our insurance company supposedly approved it and then Deltec 
called and said that they are not an in network provider with our insurance, 
so it really wasn't approved.  Deltec said our endo could write a letter of 
medical necessity (which he obviously isn't willing to do) to ask for a one 
time waiver.  He kept saying, "What's going on here people?"  and "What can 
we do to help you?" in the next breath.  I was just astonished that he would 
so strongly say that Rachel was not responsible enough for anything new.  But 
then to say, what can we do to help you just took the cake.  I was able to 
hold back my tears until we walked out the front door, but then I just lost 

I know that an A1c for someone on the pump is not the goal, but doggone we 
have really been struggling.  Our gastroenterologist basically did an 
endoscopy on Rachel and said, "Yep, she has Celiac.  Come back in 3 months."  
No help, no guidelines, no recommendations, nothing.  Where is the competent 
care out there?  I have not looked into Joslins in a long time.  At that time 
they said there was a 1 year waiting list just to get an appointment.  Maybe 
I should at least get on the list.  Our endo is not with Children's in DC, we 
already left that one.  This one is at UVA in Charlottesville, VA.  It's a 
hike for us to get to him, even at his field offices.  I'm just frustrated by 
the whole thing.  I want someone who will say, "yep, this is not the best A1c 
we could have, but here is what we are going to do to improve it for your 
next visit."  I didn't feel like we got that.  Like I don't already know that 
an A1c of 9.2 for someone on the pump is "unacceptable."  He even hinted that 
she may need to be taken off the pump until she is more responsible.  And he 
also said, "You will not be getting your drivers license."  

Anyway, I did not intend to go over this whole thing all over again.  I just 
feel the weight of the world on my shoulders.  I feel so powerless over this 
awful disease (plus the other 2).  How can I research out the best endo in 
our area?  I really don't want to go to someone new and end up in the same 
boat all over again.  Sounds like that happens a lot though.  Why is that?  
Thanks so much to all of you.  Each response was received like a giant hug.  

Much love,
Shellie Ruppert
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