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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!

 
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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.

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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.

 
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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.

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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.

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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!)