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!
Great post, Mike. I hope that all your wishes come true, especially the one around doctors getting it wrong. It’s really unacceptable today that it’s still happening so often. I’m glad that you have a correct diagnosis. 🙂
Aww, great post Mike!
A powerful and important post. We spend so much time trying to be nice and “express our concerns” when the only appropriate response is to be pissed off. Thank you.