When the Dexcom wakes you saying you’re low and your meter says you’re not. That’s how the day started. I’ve since changed sensors because that one crapped out. Incredibly frustrating.
Going blue for #BlueFridays. The things that I’ll do in the name of diabetes advocacy.
A couple of the numbers are a bit high due to my being misdiagnosed and not starting on injectable medications for a few years. But you get the idea. Diabetes Sucks.
Dexcom Graph of the last 24 hours.
Current situation
So, last year I was inspired to create a photo challenge for Diabetes Awareness Month. The inspiration came from the various 7-day photo challenges that are popular on social media these days. The difference being that this challenge would run the full month of November and it would focus on living with diabetes. And so, the #MakeDiabetesVisible Photo Challenge was born.
The response was greater than I could have imagined, with hundreds of people with diabetes sharing their stories through images across Facebook, Twitter, Instagram, Blogs, etc… And folks have continued to use the hashtag in the year that has passed since it was created.
Since the initiative was so well received, I thought we’d do it again. I also decided it was time to give the initiative a website of its own. So, here’s the challenge:
#MakeDiabetesVisible Photo Challenge
November is Diabetes Awareness Month and it begins tomorrow. During the next 30 days, I will be posting at least 1 photo a day that captures part of my life with diabetes. The goal is to make diabetes visible and show what it is like to live with ALL types of diabetes. The highs, the lows, the finger sticks, the meters, the pumps, the CGMs, the insulins, the pills, etc…
I invite all of my friends living with any type of diabetes to join me in this challenge. 30 days, 30 photos, ALL types of diabetes. Any social media platform. Facebook, Twitter, Instagram, whatever.
If a picture is worth a thousand words, imagine how much we could all say about life with diabetes in 30 days.
Please share, use the hashtag, and let’s #MakeDiabetesVisible
Thank you!
Mike Durbin | PWD T1/LADA
Last Thursday, October 11, I spent the better part of the day at the hospital for a gastric emptying study. As I mentioned in my previous post, I’ve been dealing with some GI issues for a while now, without much luck in getting answers about what’s going on. This test was the next step in the process of figuring out the problem with my guts.
My arrival time for the test that morning was 7:30 a.m., which was a real challenge considering that I work nights and my sleep schedule is weird. Unfortunately, a combination of anxiety and insomnia, as well as GI symptoms, led to my having no sleep before going to the hospital. So, I was feeling pretty rough. Still, I showered and made myself presentable and headed to the hospital. “Get up, dress up, show up”, right?
The registration clerk called me over and got all of my paperwork processed and made sure I knew where the waiting area was for the test. As we were finishing up with that, the lady complimented me on my beard and how well groomed and tidy it was. She said she doesn’t really care for them personally, but thought mine looked nice. In a moment when I was feeling exhausted and really run down, her kind words made me feel a little bit better. I had a few of my “A Little Heart Can Do Big Things” bracelets in my bag, and I gave her one and thanked her for her kindness before heading off to the radiology department.
The Gastric Emptying Study
At around 8:00 a.m. one of the technicians from radiology came out and took me back to the lab where the study would be done. She explained how the study would be conducted and what I would have to do for it. I would be given a breakfast consisting of egg whites that were mixed with a radioactive tracer agent, two slices of toast with jelly, and a 4oz bottle of water. I would have 10 minutes to eat, and then a series of images would be taken over a 4-hour period. Take a baseline image and wait 1 hour. Take image 2 and wait 1 hour. Take image 3 and wait 2 hours. Take image 4 and we’re done. It was honestly pretty simple. The hardest part was waiting and waiting and waiting. And, of course, trying to stay awake.
8:15: Breakfast. Radioactive egg whites. YUMMY!
8:30 a.m.: First Image (Stand still for 1 minute)
9:30 a.m. : Second Image
10:30 a.m.: Third Image (Are we done yet?!)
12:30 p.m.: Fourth Image (Finished!)
An Answer
Late Friday evening I received an email alerting me that the radiology report was available for viewing in the medical groups patient portal. So, I signed in to take a look. The findings indicated and confirmed what I had suspected for some time now. I am dealing with Gastroparesis.
My endocrinologist called me on Monday to officially give me the results. Since the findings are consistent with Gastroparesis he’s referring me to a gastroenterologist for followup and treatment. I’ve made the appointment with that doctor but, unfortunately, I can’t see the guy until December 12. To say I’m frustrated by that would be an understatement. I don’t want to wait any longer to start treating this problem. I’m just not doing it.
So, for now, I’m looking into scheduling an appointment with a dietician at my Endo’s office to begin the process of figuring out what I can and can’t eat, and establishing a plan for meals, etc… And I’m reaching out to friends in the Diabetes Online Community and the HealtheVoices community who have dealt with GP for resources that might be helpful.
This is not something that I was looking to add to my ever-growing bundle of chronic health issues. I really didn’t want to be right in my thinking about this issue. I’m tired of being right about this shit. However, it is a tremendous relief to finally have answers to this problem that has wreaked havoc on my life for most of the last year. Knowing what’s wrong is half the battle. Now I have an idea of what needs to be done to treat the condition so that I can get on with my life. It’s time.
For the better part of this year, I’ve been dealing with some recurring GI issues. I’ve seen a couple of doctors and have had some tests, none of which have provided any answers to this point. I have a history of GI problems; Acid reflux, ulcers, a hiatal hernia, etc…, but these have been ruled out as the cause the symptoms I’ve been experiencing as of late.
I’ve done my research and, based on the symptoms, I’m suspecting the problem is gastroparesis.
During a visit with my Endocrinologist last week, he brought up the subject. He remembered that I had been having GI problems when I saw him in January and wanted to know if things were any better. I explained that I had seen a GI specialist and that an endoscopy had been performed but didn’t find any obvious causes for the symptoms I was experiencing. I also explained that the GI specialist left the practice within a month of that test being done and that I felt that I had essentially been blown off by the doctor and staff in that practice.
I told the doctor that I believed I was dealing with gastroparesis and rattled off the symptoms I was having. Those being:
He agreed that it was a possibility and agreed with my request that we do testing to either confirm it or rule it out. So, I will be going in for a gastric emptying test next Thursday to begin the process of figuring out what is wrong with my gut. I will also be having food allergy testing done at some point in the near future to determine if I have some sensitivity that could be causing some of the issues I’m facing.
I’ve lived with my diabetes diagnosis for nearly 10 years, 7 of which were spent misdiagnosed. Years of treatments, or lack thereof, that could have contributed to this problem. The doctor acknowledged this as well.
I’m not looking forward to these tests, but I’m miserable and need answers. My quality of life is suffering because of the problems I’m having. My mental health is suffering because of all of this. I’m just tired.
Here’s hoping the answers I need will be in the radioactive eggs that I’ll be eating next week. Stay tuned.
I’m incredibly honored to announce that I’ve been selected as one of five Finalists in the Best Kept Secret category of the 2018 WEGO Health Awards. This year, over 4,000 nominations were submitted across the 16 categories. To be among the 80 finalists is humbling. My sincere thanks to all who submitted a nomination and endorsement on my behalf. Congratulations and best wishes to all of the finalists.
Remember friends, A Little Heart Can Do Big Things!
When I was in junior high school I had a metal shop teacher who would often recite this quote. Doug Bierman was his name. He made it a requirement that each of his students memorize and would randomly call on you in the middle of class and insist that you recite it. More than 20 years later, I still remember those words by heart. They are words to live by.
Mr. Bierman was one hell of a teacher, coach, and friend. He passed away in 2015 after a long illness. He left quite a legacy, and I’m thankful to have been a part of it.
Have a great week, and remember that A Little Heart Can Do Big Things!
It’s a new day and a new week. Make it count. Remember, a little heart can do big things!
Recently, I was scrolling through my Facebook feed and came across this image that a friend had posted. It was posted with challenge to write statements about oneself. The post reminded me of an “I AM” statement that I wrote back in 2006, during a time when I was really struggling. A time before I was diagnosed with Diabetes and Congestive Heart Failure.
So, I went searching through the archives to find the words to share again. Some 12 years later, they are still quite relevant and applicable. They are a much needed reminder to myself now, as I find myself struggling once again.
So, who am I?
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.
When I think about what I’ve been through and how far I’ve come, I realize just how true those words really are. And sometimes, it’s good to be reminded of it.
It’s a reminder that A Little Heart Can Do Big Things.
If you were to write something similar about yourself, what would you say? I challenge you to write a comment here, and tell me and, more importantly, yourself, Who You Are.
I am honored to announce that I have been nominated in three award categories for the 2018 WEGO Health Awards. Those categories are Best in Show: Blog, Best Kept Secret, and Patient Leader Hero.
The WEGO Health Awards were created to celebrate those who tirelessly support the mission of WEGO Health: to empower the patient voice. With 16 award categories, the WEGO Health Awards are the only awards across all conditions and platforms, that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information, and support their communities – but often without recognition.
It is humbling to be nominated for these awards alongside so many other amazing advocates who work so incredibly hard to make a difference for those living with a wide array of Chronic Illnesses. My sincere thanks to my friend, Sue Rericha, a fellow diabetes advocate and nominee, for nominating me for one of the categories. And thanks to everyone else who has nominated me or endorsed me. I sincerely appreciate it.
This year, the 16 WEGO Health Award winners will be honored at an in-person celebration in October co-hosted by the Society of Participatory Medicine at the Connected Health Conference.
I’m now looking to my incredibly supportive network to help endorse me for these awards. There are two easy ways to endorse that only take seconds of your time!
1) You can click on my endorsement badges located on the right side of this page.
2) Click here to be taken to my WEGO Health Awards profile where you can click “Endorse” under my nominee photo.
The Endorsement (Voting) period is open until August 17th.
If I have ever supported you, made you laugh, or inspired you to keep fighting – please consider endorsing me for these awards.
Remember, A Little Heart Can Do Big Things.
Thank you!
Mike Durbin
My Diabetic Heart 