I Know You Are But What Am I?

I've struggled with understanding my diagnosis for years.  In the past I have wished for a specific label, hoping that it would guide my treatment.  If you have read my postings here you will see that I looked into whether I have MODY.  This was after spending a couple years asking for the proper tests to see if I actually had type 1 diabetes, those tests came back negative.  So I now have come to an acceptance that I have type 2 diabetes which essentially means that I have "diabetes of unknown cause."

The trouble is that this diagnosis is not sufficient to assure that I get proper treatment for my diabetes.  It was six years ago that I started on my (own initiative) managing my diabetes with insulin.  This was only after exhausting my options and concluding that as someone with type 2 I would be denied insulin until I basically ended up in the hospital.  And here it is six years later and I have spent basically the entire time with a treatment regime that is indistinguishable from a type 1 treatment plan.  And for at least the last two years my endo has repeatedly called my (and coded me) as a type 1.  After all these years I have come to accept myself as a type 2, I have resisted accepting a change in diagnosis, it seems to not be supported by specific evidence and I feel like I am abandoning all my brethren who have type 2.


The problem is that I am now facing a quandary.  Maintaining a diagnosis of type 2 carries a great deal of prejudice.  I can stand up to the type of prejudice where people might insulin me, but it is not in my best interest to just accept the prejudice of the medical and insurance system which will deny me treatment that I need.  And unfortunately that wall is looming.  I am fast approaching Medicare which treats type 1 and type 2 very differently.  And my current insurance which is actually quite good has very different standards for type 1 and type 2.  At my latest visit with my endo yesterday we had yet another hypo talk.  You know the talk.  "You can't have an A1c like this without hypos."  "You must be having overnight hypos."  "I don't like those wild swings" (they actually are not that bad).

So my endo again has asked me to start using a CGM.  And I have been thinking about it.  I had the opportunity to take a course with Dr. Stephen Ponder on his "SugarSurfing" technique at the last DiabetesUnconference.   I was even lucky enough to win a signed copy of his book.  But sadly the techniques are not readily implementable without a CGM or testing more than 20 times a day.  So I have been thinking about a CGM.  And my end has become more insistent.  It isn't just the first conversation.  And I have been resistant.  I feel like if I accept a CGM based on her diagnosis of me as type 1 I will have gone through a door and will affect how I identify myself, who I think I am and what tribe I belong to.

I think diabetes labels are "stupid."  People should get access to the treatment that they need, not the treatment that is arbitrary assigned to their label based on cost control.  Sadly I am coming to the realization that I am at the entry door and I will have to decide.  Ultimately I will only harm myself if I don't go through that door.