formats

“No one today is purely one thing.” ~ Edward W. Said

So, back in February, I shared that I was feeling caught Between Two Fields.  I shared about the discovery that I had been misdiagnosed with type 2 diabetes when what I was actually dealing with was more than likely LADA, or Latent Autoimmune Diabetes in Adults.  I also mentioned that my new endocrinologist wanted to do a few tests to get fresh data to confirm what we were suspecting.  Well, that’s happened.  And I got the results and new label during my office visit on April 21st.

The new C-Peptide test and GAD65 autoantibody tests confirmed that there are both insulin resistance and autoimmune components to my diabetes.  My pancreas is still producing some insulin, but I’m also positive for the GAD65 autoantibodies.  Based on those results, and the fact that I’m also apparently dealing with some autoimmune issues with my thyroid, my Endo felt it appropriate to change my diagnosis to LADA, as that more accurately fits my case.  I was expecting that and really didn’t have a problem with it until I was reviewing my visit summary sheet after the appointment.

diagnosis

Seeing “Diabetes mellitus type 1, uncontrolled” on my chart after seeing type 2 in that spot for the last 7 years has stirred so many emotions.  I’m happy, angry, sad, confused, and a million of other things all at once.

I’m happy to know why I’ve struggled for so long with treatments not working as they should, and to now have a regimen that we think will help going forward.

I’m angry that I was misdiagnosed when there was evidence of an autoimmune component so early, yet was overlooked because I fit my doctor’s definition of a type 2 patient.  It pisses me off that doctors are just as guilty of perpetuating the stigmas surrounding the types of diabetes as the media.  And what’s worse is the knowledge that I’m not alone in this.   This bullshit happens all the time.  And in this day and time, there’s just not a good reason for that.

Having said all that, though, at the end of the day, the label doesn’t matter as much as the treatment.  I’ll be continuing my regimen of Humalog, Lantus, Victoza and Jardiance for now.  That combination seems to be doing something positive as my A1c was down to 7 this time around.  It’s a work in progress.

And, at the end of the day, changing my diabetes label isn’t going to change me as a person.  I’m still the same guy that everyone in the community has come to know and love.

As for my advocacy efforts, this change is only going to serve as a spark of motivation to do more.
I’m still going to be advocating for people with all types of diabetes; Type 1, Type 2, LADA, Gestational, MODY, etc… you’re all my type.  We all deserve encouragement, love, and support.  You all have mine.

Admittedly, I am struggling with the idea of changing the focus of this blog and the possibility of rebranding.  The initial fix may be as simple as changing to tagline to be less type focused and more inclusive.  “Living with a lazy pancreas and a broken heart” kind of has a nice ring to it.  We’ll see.

And then, well, there’s rewriting my story page after 7 years…

; to be continued…

 
formats

Last month, I had the opportunity to attend the Diabetes UnConference in Las Vegas.  It was an incredible, life changing experience, and I’m thankful for having been able to go.  Due to a series of unfortunate events that have occurred since I returned from that trip, I’ve not been able to write about the experience as I had planned. Although, I guess since we all agreed to keep a lot of what happened during the UnConference sessions private, not having time to write isn’t exactly a bad thing.

I do, however, have this highlights video that I put together using photos taken during the trip.  That I definitely can share.  I hope you enjoy it!

My sincere thanks to Christel, the facilitators, and all of the attendees who made the UnConference such an amazing experience.  Lots of love to all of you.  You’re my  Tribe.  #VegasDust

 
formats

IMG_3671
So, it’s been a while since I’ve posted anything here on the old blog, and some interesting things have occurred in my diabetes life since the beginning of the year.  I’ve been struggling with processing some news I received last month and to find the words for this post, so bear with me.

On the 25th of January, I had an office visit with a new endocrinologist.  For the purposes of this post, we’ll call him Doc B.  Anyway, Doc B seems like a great guy. He was very easy to talk to, non-judgmental, and, most importantly, he was really interested in my case.  In his words, “It’s unique.”  Diagnosed with type 2 and CHF at 24, issues with medications not working, progression to insulin use within a short period, etc…  But two things stood out to him.  First, my c-peptide results indicate that I’m still producing a freakishly high amount of insulin.  So, insulin resistance is an issue.  I knew that already.  And secondly, the results of the GAD65 antibody test that was done before the appointment came back positive.  The report listed the result as GAD65 = 7.7  High.  This would indicate an autoimmune component to my diabetes, and it certainty raised several questions.

My first question was how long the GAD antibodies had been present.  Doc B looked back through my records and found results from 2 prior GAD65 tests.  One from about 4 years ago, and one from the time I was diagnosed a little over 7 years ago.  BOTH of those results were positive.  What the fructose?!  The word misdiagnosis quickly came to mind.  And, at this point, it certainly appears that’s what happened.

In hindsight, how it happened is pretty obvious to me.  A young guy walks into a doctor’s office with a yeast infection.  He’s fat, his blood sugars and A1c are FUBAR, and there’s a family history of diabetes.  So, he must have type 2 diabetes.  The early test results were basically brushed aside in part because of the mentioned factors, but also because the doctor didn’t specialize in that stuff.  And being new to all of this shit at the time, I didn’t know any better.   Thankfully, I do now.  But the more I know, the more it pisses me off that this shit happens.

So, the next obvious question is: what type of diabetes do I really have?  I have characteristics of both type 1 and type 2, and don’t fall squarely into either one.  So what the hell do I call it?  Doc B seemed to think LADA/1.5 might be appropriate, but wasn’t quite ready to change my diagnosis just yet.  He wants to do a few more tests before making that call, but it seems likely to happen soon.  The one thing he did say was that the countdown clock on my pancreas function is ticking.  Unfortunately, we can’t see the timer.  Not exactly reassuring.

As far as treatment goes, not a whole lot is changing, regardless of what type I may have.  I’m still on Humalog for meals and Lantus at night, Victoza, and Jardiance.  And I will be trying Toujeo in the near future.  That much I do know.  And keeping that stable and consistent helps.

That still leaves questions in my mind about my advocacy efforts in the community and how a change in labels might impact that. I’ve identified as a type 2 for 7 years.  That’s all I’ve known.  That’s how I’m known in the community.  And I’ve always been proud to support and advocate for people with all types of diabetes.  That’s not going to change.  I love my DOC friends and family.

To be honest, right now I’m feeling sad, angry, confused, and a million other things all at once.  I’m like the hawk in the photo above, sitting on a lonely fence post between two fields, unsure of where to go next.