My Diabetic Heart

Eight Years with a Confusing Pancreas and a Broken Heart

Posted on December 29, 2016 by mydiabeticheart

Today is the 8th anniversary of my initial diagnosis with diabetes and congestive heart failure. My, what a long and trying eight years it has been, too. So much has happened since that fateful day. So many changes in my life, my diagnosis, and my treatments.

Change is so often hard to accept. Admittedly, this last year has been a real struggle for me as I’ve worked to come to terms with my misdiagnosis and the changing of my label from type 2 diabetes to latent autoimmune diabetes in adults, or LADA. On one hand, the change has been positive in that I’ve gained access to different treatment options, more supplies, etc… On the other hand, though, it has had the negative effect of leaving me without the sense of identity I had for 7 years, without the sense of belonging I once felt, and without much of the voice that once spoke through this blog and other places in the diabetes community . And, as this year comes to a close, I find myself still searching for those things. If only in my mind.

I am hopeful that the coming year will be better and that I’ll find the answers to the questions that keep my mind occupied. That I’ll find peace. I hope.

Eight years.

Wow, only eight years? It feels like so much longer. Alas, just eight years. Eight years of knowing, caring, surviving, and sharing.

Eight years of knowing that I have a two invisible chronic illnesses for which there are no cures. Eight years of knowing that I’m not alone in my fight. That there are millions of others fighting the same things. Eight years of getting to know some of the most amazing people around. Lots of love to everyone in the Diabetes Online Community.

Eight years of caring more about my well being. Eight years of doing everything I possibly could to beat the odds against me. Eight years of caring for those around me, both online and offline. Eight years of being me.

Eight years of surviving the many challenges before me. Eight years of enduring the daily routines required to stay alive. Eight years of painful medical procedures and tests to monitor changes both good and bad.

Eight years of sharing my story with the world. Sharing both my victories and my defeats, showing what it’s really like to live with these conditions. Sharing the message that it is possible to live well with both. And that there is no shame in being diagnosed with them.

You’ve surely noticed the repetition in this post by now, and you may very well be ready to leave it. And, honestly, I really can’t blame you. I’d love to leave it all behind too. But I can’t. That’s life with diabetes and congestive heart failure.

Posted in Cartoons, Diabetes, Health, Heart, Lessons Learned, Life, Mental Health | 1 Comment

Happy World Diabetes Day

Posted on November 14, 2016 by mydiabeticheart

wddpostcard

Posted in Diabetes, Diabetes Awareness Month, World Diabetes Day | Leave a comment

Helpful Reminders

Posted on May 20, 2016 by mydiabeticheart

The final topic for Diabetes Blog Week is about Diabetes Tips & Tricks. The one I have to offer has to do with where I keep my medications and supplies now.

Since moving into my new apartment, I’ve taken to keeping all of the medications and supplies that I need every day in the kitchen, in the same large drawer where I keep the silverware. I know it may seem an odd place, I’ll grant you that, but in my world it makes sense. Here’s why.

The day starts in the kitchen with breakfast. I have to open the silverware drawer to get utensils for eating. But before I can eat, I need to check my fasting blood sugar, take a shot of Humalog to cover the meal I’m preparing, and take a shot of Victoza. I also need to take all of my oral meds for my heart and other issues. So, having all of that stuff right there in a place where I’ll see it at the start of each day serves as a reminder and helps me start the day off right. And since I usually have a small meal before bed, I also keep my Lantus pen there as well, so I see it and remember to take it. So far, it seems to be working for me.

For Our Families and Ourselves

As this week devoted to writing about life with diabetes comes to an end, I think it’s important to remember that there is so much more to our lives than just diabetes. We are so much more than the disease with which we live. I know all too well that when living with chronic health issues that require constant attention, it is easy to become so consumed by those thoughts that we lose sight of the fact that there’s more to life that just those health issues. Sure, they are always with us, but they should not be the center of attention all the time. And it’s also important to remember that we, the people diagnosed with the disease, are not the only ones affected by it. Our loved ones endure the struggles of the diagnosis as well. They need and deserve our appreciation and support, too. And so, I ask you to join me in pledging to remember these things going forward.

The Pledge

We, the undersigned, acknowledge and understand that we, as PWD’s, are not the only people affected by the disease with which we have been diagnosed. That our loved ones endure the struggles of this diagnosis along side us. We pledge to remember this, to show appreciation for their support, and to support them in return.

We, the undersigned acknowledge and understand that there is much more to life than diabetes and that it is important to take every opportunity to enjoy life in the moment. We pledge to stop and smell the roses and make memories, like the one above, as often as possible.

We, the undersigned, pledge to always remember the importance of making time for our families, and for ourselves.

Signed,

Mike Durbin. (And hopefully everyone else reading this.)

Today is the final day of Diabetes Blog Week. Click for the Tips and Tricks Link List.
Let’s round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There’s always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.)

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Healthcare wishes

Posted on May 19, 2016 by mydiabeticheart

Today’s topic about healthcare experiences comes at a time when I’m still trying to process the recent discovery that I was misdiagnosed with Type 2 diabetes, when what I actually have is Latent Autoimmune Diabetes in Adults, also known as Type 1.5 or LADA. This after 7 years of struggles with treatments not working and being told I just need to try harder. Bullshit that, based on test results that were present at diagnosis, could have been been avoided. I’m sitting on a lot of anger about this. Rightfully so. But I don’t know how to express it in a way that’s not riddled with f-bombs. I dropped those yesterday, so I’ll spare you today.

Today, I’ll share wishes. Wishes for my doctors. Wishes for the diabetes community. And one for me. The list is long. Grab a snack, a Diet Coke, and bear with me.

Wishes for my Doctors

I wish my primary doctor had seen more than a young, fat guy, who fit her definition of a patient with Type 2 diabetes. I wish she had seen the test results before her and used those to give a proper diagnosis. I wish that she had seen that my case was beyond her abilities and that I needed to be sent to an endocrinologist much earlier than I was.

I wish my current Endo had joined my team earlier. He discovered the misdiagnosis and confirmed that I have LADA. He’s worked with me to find a better treatment regimen for my needs. After 7 years of struggles, things are making sense.

I wish my doctors could see the bruises and scars on my stomach from all of the injections of Lantus, Humalog, and Victoza that I take each day.

I wish they could see the pained look on my face as the needles pierce my skin and the Lantus begins to burn.

I wish the doctors could see my frustrations as I sit down each week and sort out a dozen pills.

I wish they could see the looks of stress and strain on my face as I struggle to figure out how to pay for all of the medications and supplies. As I choose between buying medications, paying bills, and putting food on the table.

I wish the doctors could see the concern in April’s eyes when she knows I’m struggling with highs and lows.

I wish the doctors could see all of the external factors that impact my ability to manage well.

I wish the doctors could see the efforts I put into managing my diabetes each day. And see more good in my numbers than bad.

But what I hope my doctors never see, is me as just one more donor to their retirement funds.

Wishes for the Diabetes Community

A cure for diabetes would be AWEsome! And I’m not saying that just because it’s what everyone wants, or because I don’t want to live with the daily frustrations of living with diabetes.

No, I wish for a cure for the 6 week old baby girl who was born with type 1 diabetes, and will never know a life without the pain of multiple daily injections (MDIs) of insulin, frequent blood glucose checks, highs and lows, etc… unless a cure is found.

I wish for a cure for the man or woman who has lived with Type 1 diabetes for 40 years, who has never known a life without the ball and chain that is diabetes. I’d like for them to experience life without it, but that won’t happen without a cure.

I wish for a cure for all of my friends and loved ones living with Diabetes.

I wish for a cure for those who are in a lot worse shape than I am. As much as I dislike living with Diabetes, I’d rather see everyone else cured before me.

One last wish for Me

Now, I do have one last wish for myself. You see, I have a heart of gold, but it’s rather weak physically, and doesn’t function as it should. So, I wish for my heart to be as strong as my will to live, so that I may continue fighting for all of us, and have a long life that was well spent.

It’s day 4 of Diabetes Blog Week and the topic is The Healthcare Experience – Thursday 5/19 Click the link to see posts from others.
Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

Posted in Diabetes, Diabetes Blog Week, Doctor Visits, Lessons Learned, Life, Mental Health | 3 Comments

F-bombs for Diabetes

Posted on May 18, 2016 by mydiabeticheart

Fuck Diabetes! Yeah, I said it. Someone needs to. And after riding the Glucoaster all night following my 9 hours at work, I’m more than willing to do the job. I feel like hell. I’m incredibly tired. I’m cranky. And I hate this disease. F**k it and all of the misery that goes with it.

And as for the “person with diabetes” versus “diabetic” labels thing… I don’t tend to get worked up over those. I respect that some folks do and I understand why. Frankly, though, I much prefer Mike.

Click for the Language and Diabetes Link List.
There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

Posted in Diabetes, Diabetes Blog Week, Inspiration, Lessons Learned, Life, Wordless Wednesday | 6 Comments

The Other Half of Diabetes

Posted on May 17, 2016 by mydiabeticheart

If you’ve followed my blog for any length of time, you’re likely aware that I’ve made no secret of my struggles with anxiety, depression, and PTSD. I’ve shared some pretty dark stuff on those topics over the last couple of years. When I wrote the Confessions of a Broken Man at the end of 2014, I was in such a bad place mentally that I was ready to end it. Obviously, I didn’t, but the possibility was real. A few months after that I shared about The Ah Ha Moment I had that led to my diagnosis with PTSD and that I was working to get back on the wagon. I’ve had success with that. Though I’m still struggling with some things, I’m in a much better place today. Life gets messy at times. And it’s OK to need help with cleaning things up. We just have to ask. I’m glad I finally did.

Mantras, Reminders, and Walks in the Woods

On my worst days with diabetes and congestive heart failure, when everything seems to be going wrong and I’m ready to give up, I try to remember how far I’ve come since I started on this journey. I try to remember the struggles I’ve overcome this far and the strength and determination it took to do so. I try to use that as assurance that I can get through the difficulties before me. I say try because some days it works, and other days it makes no difference at all.

Some days, looking back through my blog archives for inspirational quotes that I’ve shared helps. This quote from a post in 2012 has become something of a mantra or motto. It’s certainly fitting.

“A little heart can do big things.” – me

Some times, though, I really just have to take the time to remember who I am. I have to look inside myself and reconnect with the person that I know I am.

I am a strong, confident, caring, loving, and passionate man. I have a sound mind, and a strong spirit. I am well educated; possessing the knowledge and abilities needed to make it in this world. I am strong willed; filled with a sense of determination and endurance that will carry me through all situations. I am filled with respect, not only for others, but more importantly, for myself.

I’ve had more than my share of those days. And I’ve spent a great deal of time trying to reconnect and thinking things through. I’ve made progress. Slowly but surely.

I’ve found that the absolute best thing for helping my mood and clearing my mind is spending time hiking the trails at the many nature preserves in the area. And when the weather is cooperative, that’s how most of my days off from work are being spent. I take my nature and trail guides, camera, notebook, walking stick and water, and hit the trails. I stay out for hours at a time. And it helps a lot.

And taking my camera along on my walks in the woods has provided plenty of photos for sharing with friends. Hope is being able to see that there is light despite all of the darkness.

One last quote. It’s one of my favorites.

“Life is not a journey to the grave with intentions of arriving safely in a pretty well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out and loudly proclaiming … WOW! What a ride!” ~ Author Unknown

Diabetes Blog Week – Day 2 The Other Half of Diabetes Link List.

We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

Posted in Depression, Diabetes, Diabetes Blog Week, Lessons Learned, Life, Mental Health | 7 Comments

To Get Through This Diabetes Life

Posted on May 16, 2016 by mydiabeticheart

“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.

Posted in Diabetes, Diabetes Blog Week, Inspiration, Lessons Learned, Life | 3 Comments

Changing my diabetes label

Posted on May 2, 2016 by mydiabeticheart

“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…

Posted in Diabetes, Doctor Visits, Health, Lessons Learned, Life, Rants | 6 Comments

Throwback Thursday: Diabetes UnConference Highlights

Posted on April 28, 2016 by mydiabeticheart

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

Posted in D-Meetups, Diabetes, Humor, Inspiration, Lessons Learned, Life, Shout outs | 1 Comment

Between Two Fields

Posted on February 18, 2016 by mydiabeticheart

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.

Posted in Diabetes, Doctor Visits, Health, Medications | 88 Comments