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“Dearly beloved, we are gathered here today to get through this thing called life.” ~ Prince

This thing called diabetes life.

That’s why I’m here.  That’s why My Diabetic Heart is here.  It’s here because I was diagnosed with what was long thought to be type 2 diabetes, and also with congestive heart failure, at age 24.

I started writing here as a way to document what I was going through with the scary, life changing diagnoses that had been dropped in my lap.  Writing helped me then and still does when I’m able to find the time and get the words I want to say out of my head.

As I continued sharing my story through the blog and other social media avenues, I found that what I was sharing helped other people who were going through some of the same things that I was.  I found people who understood.  I found community.  I found encouragement and support.  I found people who genuinely care and many are dear friends to this day.

They are my tribe.  They help me get through this thing called diabetes life.  And everything else that comes along for that matter.  And I love them for that.

My tribe consists of people from all walks of life.  Some live with Type 1 diabetes. Some live with Type 2 diabetes.  Some folks, like myself, have LADA.  Some have had gestational diabetes during pregnancy.  Some are parents of children with type 1. Some are children who have parents with diabetes. Some are spouses of PWD.  Some are just friends who support the cause.  And some are just Type Weird.

Personally, I think we’re all Type Screwed.  And that’s what should unite all of us.

At the end of the day, regardless of the type of diabetes a person may have, there are a few things that we all need in order to live well with the hand we’ve been dealt.

We all need and deserve access to good doctors, medications and supplies, and diabetes education.

We all need and deserve proper treatment regimens, tailored to our personal diabetes management needs by our doctors and not insurance company bean counters.

And last, but just as important, we absolutely must have the love and support of family and friends.  Living with all types of diabetes is hell.  And we really shouldn’t have to go through this alone.

We need better.  We deserve better.  And together we can achieve better.

Together, we just might get through this diabetes life.   Lots of Love, Everyone.

 


Today is the first day of the 7th annual Diabetes Blog Week and this is my submission for the topic: Message Monday. Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?  Follow the links above for more information about this blogging event and join the fun.

 
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“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…

 
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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