DIY Loop Helps Keep Me Sane

There are a limited number of systems when it comes to advanced diabetes tech. As of now, in the United States, there are 3 companies producing insulin pumps: Medtronic with Minimed, Tandem with t:slim, and Insulet with Omnipod. To my knowledge, there are four companies producing continuous glucose monitors: Medtronic, Dexcom, Libre, and Eversense.

I was an Animas user from 2002 to 2012 (adding in Dexcom in 2007). I switched to a Medtronic 723 and their brand of CGM (not sure which one it was – it was pre-Enlite). I was not fond of it, although it was great to have my sensor connected to my insulin pump so I didn’t have to carry around a PDM. I disliked the sensor enough that I ended up going back to using my old Animas 1200 and Dexcom (probably a G4 Platinum at that point). From 2014 to 2017, I honestly switched between an Animas Ping, Omnipod Eros, and multiple daily injections (MDI). In 2017 I started the Medtronic 670g. It was great at first, but the novelty wore off, and I didn’t get enough sleep from all the beeping. It was not for me.

In 2018, my childhood diabetes camp started hosting an “Adult Retreat” weekend in Sequoia National Park. At Bearskin Meadow Camp, I learned everything I needed to be a successful human, not just a “good diabetic” (a term I will forever condemn). I was so excited to get back to a place that loved me for me, regardless of diabetes. You can learn more about the organization here: https://dyf.org/

That’s where I met my current doctor. Every time we went over CGM and Pump data, he would ask if I was ready to switch to looping.

It took me long enough, but in 2020 my health insurance stopped covering the guardian sensors and made me switch to Dexcom G6. Even though my 670g was still in warranty, insurance wanted me to pay my 30% coinsurance to obtain a t:slim insulin pump. I would love to be able to use a t:slim, but I was not going to shell out $4,500 when my current pump was still under warranty. Eventually, after threatening I would start looping with a 20 year old MiniMed 722, I finally got them to agree to cover Omnipod Eros via my Pharmacy Benefit Manager.

DISCLAIMER: I do not recommend my threatening approach. I get overly emotional and it seems to work sometimes, but it is probably better not to threaten the people who pay for a majority of what keeps you alive. This is where the lack of social support in diabetes care comes in, but that’s a topic for another time.

I have been looping using a MiniMed 722 (shhh!!) or Omnipod Eros, Dexcom G6, Riley/Orange Link, with my iPhone 11 for just under a year now. I did the straightforward build using loopdocs.org. I’ll write about my re-build experience next month, so keep an eye out!

I haven’t ever been happier with how I am dealing with diabetes since starting Loop. It’s not necessarily because of Looping and its open source code, but it is because of the fact that it is a DIY system. Having a DIY Loop is a personal responsibility I have taken on to help make diabetes a runner up for the “most important part of me” category. It is a system that I feel responsible for maintaining in order to keep me alive. I can sleep all the way through the night. I can mute alarms. I can forget to bolus and still have a relatively easy time making the adjustment once it’s discovered.

It has allowed Sonja, not Sonja’s diabetes, to be number one. And that is currently my key to preventing burnout.

Have you created a DIY Loop? Do you have questions about DIY looping? Do you have a different approach to keeping yourself #1 to prevent burnout? Tell me about it in the comments or at https://twitter.com/SonjaT1D. You can also always reach out to me via email at sonjac@nevada.unr.edu.

Use What Mother Nature Gave You!

I hear a lot of people say things like, “I never let diabetes keep me from doing anything!” I disagree, and I believe rhetoric like this is one reason PWD do not always use the resources that have been made available to them.

Several other blogs and articles have hit on the idea that diabetes privilege is a real factor in care. There are so many primary factors that go into diabetes management: insulin, glucose testing, additional injectables, pills, CGMs, pumps. We often forget other factors that are not considered by US health insurance: food accessibility, exercise or gym memberships, mental healthcare, and more. All these factors, primary or not, are influenced by money.

Diabetes management in the United States is absolutely a privilege.

Understanding this, I think it’s important we stop stigmatizing people for using the silver linings that having diabetes can provide. Some of the perks that I have used are:

  • Disability Resource Center testing accommodations. I have registered with DRC in both undergraduate and graduate programs. There is absolutely nothing wrong with using a proctor to take exams. There is nothing wrong with taking the exams in a room alone. There is also nothing wrong with using time-and-a-half to complete the test, even if your blood sugar stays in range. This is the home screen for a test I will be taking on Sunday, while utilizing my 1.5x time allowance:
Time and a half! Use it!

  • The National Parks and Federal Recreational Lands Pass. Did you know that having diabetes, or any other chronic illness that qualifies as a permanent disability by ADA standards (endocrine is listed!), can get you a free lifetime pass into any Federal Recreation entrance.
Disability Access Pass
  • I know some people have used diabetes for fast pass access at the Disney Resorts in the past. However, I also hear that luxury has ended, but am completely unsure about that policy or its parameters. If you know, please let me know in the comments!
  • Family Medical Leave Act – also commonly referred to as FMLA. I have Intermittent FMLA filed every year. Unfortunately, this is also a privilege rather than a right because many medical practices charge for filling out any paperwork. The benefit of having Intermittent FMLA is that you can take your time if you have an urgent low before work or on the job. Additionally, I can take a day off to heal after any bad blood sugar day that may make it so I’m not performing at 100%.

This is a benefit that is often stigmatized by both coworkers and employers, and that confuses me. It is never in the business’ best interest to have a sub-standard employee being on duty. It is risky to the employee, to the coworkers, and frankly to the business. The stigma that has been perpetuated surrounding FMLA is foolish and flagrant.

PLEASE share in the comments your experiences with what I have mentioned and any other perks you may have come across. I plan on posting a follow up to this piece in a couple weeks with additional benefits, including how to use or obtain them. Your input is greatly appreciated (sonjac@nevada.unr.edu).

It’s Father’s Day – Let’s Talk About the Parents!

For Father’s Day, I’d like to take a moment to thank my parents and all the other parents of PWD! (I LOVE YOU DAD!)

Dad, Me, Mom (and a photo bomb by the awesome usher!) at a Minnesota Twins game (probably 2017?)

I’ll never forget the drive home from the hospital the week I was diagnosed.  We had been in Oakland for an A’s game (on my parent’s wedding anniversary, at that). I was wheeled out of the Oakland Coliseum on a stretcher with absolutely no idea what was ahead of me. My poor parents were overwhelmed, but they hid it well.

Photo from the ICU at Children’s Hospital Oakland in August 2001.

On the way home, about a 5 hour drive on US-101 north, I realized I needed my long acting insulin. Dad took the next exit, then drew up a syringe of NPH in front of the headlights. A CHP vehicle even stopped to make sure we were okay – upon finding out he was drawing up insulin, he even asked if we needed a glucagon!

My dad was also typically the chef in the house, too. He kept me fed, learned to count carbs, and helped me with pharmacy trips and getting a hold of everything I needed to, well, be alive.

Both my parents were incredible with giving me what I needed to remain a kid. I am privileged beyond belief.

Not every parent is in a position to do this. Keeping your head above water is difficult, especially with the time, financial, and emotional toll of diabetes involved. There are blogs by parents of kids with diabetes. While my parents weren’t a part of the DOC in the early 2000’s, most parents today have some kind of internet access. It is up to us to reach out in places where there may be folks without resources. Those parents have it harder than us, and we must let them know we have their back, we want to hear them, and we are available to help.

So here’s what I ask of you today – reach out to a local nonprofit, a public library, the HR department of large employer, or other places where there may be parents of children with diabetes. Leave a flier with your number, email, or blog and simply state: “Do you have a child with diabetes? [I, or someone I know] have diabetes. Let’s create a network to support each other.”

Tell me your plans in the comments or on twitter https://twitter.com/SonjaT1D. We can support each other – so let’s get to it!

Disordered Eating in Diabetes

A heads up – this is going to be a heavy post. It is undoubtedly controversial. It is probably triggering to some. I completely understand if this is a topic you want to avoid, and I respect your decision if you do not want to continue reading.

I do not receive compensation from any company mentioned in my blogs.

If you or someone you know is struggling with disordered eating and diabetes (any type), please reach out to the 24-hr Diabulimia Hotline at (425) 985-3635, or self-research at http://www.diabulimiahelpline.org/. There are people who want to help.

I have never talked about this. Not out loud. Not in writing. Only in my head (and in therapy).

Me in 2012 vs 2019

Disordered eating is common in the type 1 community. When we think of diabetes and eating disorders, the first though is often diabulimia. According to National Eating Disorder Association (NEDA), diabulimia is an eating disorder that occurs in type 1 diabetics when they reduce or cease taking insulin in an attempt to lose weight1. It is estimated that 30% of women with T1D will be affected by diabulimia in their life. But it is not the only disordered eating that occurs in individuals with diabetes2.

Many people with diabetes (PWD) were introduced to diabetes management by a dietician that taught about counting, limiting, and substituting carbohydrates in the diet in an attempt to “control” blood glucose. This was my experience. I remember when my mom started using Splenda to make desserts – I thought it was gross, but I ate it anyway because I knew that she worked hard to keep me healthy and happy.

As a child, I did not think much about my blood sugar. I had a great team at Children’s Hospital Oakland (which is now renamed and associated with UCSF), and they were always great about reminding me that I could eat whatever I want because that is what insulin is for. Leaving home to attend university is when I began to struggle.

My first endocrinologist outside of a pediatric setting did not approve of my methods of diabetes management or how I chose to eat. She had me coming into her clinic every 2 weeks because she said I was “out of control” with an HbA1C of 6.8. (In hindsight, I should have realized she did not treat many T1Ds, mostly T2Ds with comorbidities and complications.)

I took her approach personally. I stopped eating when my blood sugar was in range and asked for a prescription for the CGM available to patients in 2007 – a Dexcom SEVEN3. I looked at the monitor every 10-15 minutes in the hopes of catching any highs or lows before they happened. It turned into an obsession. I would not eat unless it was to adjust my “flat line” on the Dexcom.

Long story short, after approximately 8 years of living this obsessive life, I began to recognize that what I was experiencing was disordered eating, even if not diabulimia. I slowly turned to low carb meals and protein shakes for nutritional content. After being married, divorced, and moving across the country, I found a licensed clinical social worker (LCSW) who helped me recognize that I was still practicing disordered eating. I wanted to enjoy the taste of food – I just didn’t think it was worth the risk of diabetes complications. What I was not taking into consideration was that it’s impossible to maintain life without proper caloric intake. My fear of failure was clouding my logic.

I do not believe I am completely free of disordered eating. However, dialectical behavioral therapy (DBT) with my LCSW makes a massive difference in everyday life4. I have accepted that I do not have the ability to be perfect and I should not expect that from myself. I was able to heal from the fear instilled in me by my first adult endocrinologist and return to the mentality of my team from pediatrics. I started using grounding techniques when I want to frequently look at my Dexcom (now using G6) readings5.

The Growlery (Source 5)

As with most bloggers, I simply want you to know you are not alone. If you are struggling, there is help available. You do not need to be perfect in order to live a healthy life. But, most of all, blood glucose readings, interstitial glucose readings, and HbA1C labs are simply information we use to make insulin dosing/pump setting decisions and they should not be treated as a report card.

I’m not going to ask you to share your story, as that is a pretty invasive request. Instead, I will ask you to please feel free to reach out to me personally (sonjac@nevada.unr.edu, https://twitter.com/SonjaT1D) if you are not comfortable seeking out your own resources. I love you. I will hear you. I want to help, even if all I have to offer is an ear.

Sources:

  1. https://www.nationaleatingdisorders.org/diabulimia-5
  2. https://doi.org/10.2337/diaspect.22.3.135
  3. https://www.dexcom.com/about-dexcom
  4. https://www.verywellmind.com/dialectical-behavior-therapy-for-eating-disorders-1138350
  5. http://www.tothegrowlery.com/blog/2017/4/18/six-different-types-of-grounding-exercises-for-anxiety-intense-emotions

Abby…Dearest?

On June 5th, 2021, Abigail Van Buren, known for her advice column, “Dear Abby,” took on a question from the coworker of a diabetic whose continuous glucose monitor makes noises.

https://www.berkshireeagle.com/arts_and_culture/advice/womans-health-monitor-alarm-disturbs-coworker/article_83501a22-c3d5-11eb-9ffd-17613aacde92.html

The Diabetes Twitter-verse was less than enthused.

I’m going to let you know up front, my mind did not go to the same place as most people.

As a person with ADHD, I completely understand the need for a conducive work environment. Not everyone has a career where they are able to wear earplugs or headphones for concentration. At the same time, not everyone has the ability to keep a flat line glucose level to prevent alarms from going off.

Am I supposed to endure this annoying sound even though she can put it on vibrate?

More transparency from me: the question is insensitive. It is blaming the person who is paying intricate attention to their blood sugar. Most of us know that the beeping indicates something isn’t quite right, and I know when my blood sugar isn’t in range, I’m. Moody. As. Hell. 

I guess my first instinct is wanting to know whether the coworker has spoken to the person with diabetes or not. I would assume there has been open communication in the office about the CGM, especially if the coworker knows that it could be put on vibrate. Otherwise this is just an incredibly unhappy person (based on the assumption they did research to learn it vibrates).

Abby suggests the coworker needs to speak directly to their coworker. I completely agree with this. Abby suggests the coworker speak with a supervisor if the person with diabetes (PWD) refuses to switch the alerts to vibrate. I also agree with this suggestion. Why? Because the coworker could be wrong. It could be that the PWD cannot silence the alarms (I know I can’t silence low alerts!). It could be the person has extenuating circumstances (pregnancy, for example), that require even closer monitoring than usual. Or maybe the PWD is simply being spiteful because they aren’t fond of the coworker.  Abigail Van Buren cannot see what is going on, and because of that I think she probably answered in the most concise manner: You can be an adult and address this situation. If you can’t, talk to your supervisor and they can deal with it.

Do you have a workplace story? Has anyone every given you grief for taking care of yourself? Have you had trouble with management?

Respond to my blog topics on Twitter! Talk with you soon!

“Do you have the bad kind?”

If you have diabetes, you have heard the same questions and comments over and over again:

Do you have the bad kind?

But you don’t look diabetic!

Should you be eating that?

And you have likely used some of the obvious responses:

What is the bad kind of diabetes?

What does a diabetic look like?

I can eat whatever I want.

So, why do people continue to treat people with diabetes (PWD) differently based on a medical diagnosis that they don’t understand?

People want to help. Sometimes people do not know any better. Often people believe that everything they have heard about diabetes is the same for each person. But the reality is that we are all different biological beings. There is no right answer, aside from the fact that people should refrain from asking invasive questions.

With this in mind, what would be a good approach for answering these questions?

The approach that seems to work the best for me is to be honest. “Do you have the bad kind?” can be spun into a learning moment.

            “Well, there is not a good or a bad kind. I would argue having any type of diabetes is bad with some silver linings. Would you like to learn more about Type [1, 2, Gestational, LADA, etc…] and how it affects me every day?”

This approach isn’t for everyone. What works for you? Let me know in the comments or via email sonjac@nevada.unr.edu. I would love to hear your input, and may feature your comments in an upcoming blog!

Come back tomorrow for another blog post and information about my new Twitter account!

An Introduction

Dealing with diabetes sucks. Whether you have been diagnosed with Type 1, Type 2, Gestational, are a caretaker or a medical professional, you will understand how diabetes complicates everyday life. It’s no wonder that people with diabetes are at an increased risk for mental health comorbidities and increased stress.

What is the purpose of this blog?

If you visit my “About” page, you’ll find my mission statement:

The mission of Mind on Diabetes by Sonja Cunningham is to create an online space where people with diabetes can learn and acquire fellowship, without judgment, in order to appreciate the silver linings of living with diabetes.

            The presence of judgement in diabetes care is severely underestimated. Judgement from healthcare providers is unavoidable. Blood glucose (BG) readings, HbA1C, and other standards of measure look at what we have done wrong rather than what we are doing right. Using an alternative mindset, I like to look at these standards of measurement as a source of education rather than a performance evaluation.

As an example, I was in college when I first saw an adult care endocrinologist. Her question to me in my first appointment was, “Why is your blood sugar high right now?” My primary observation was that she assumed there was an answer. Not every BG reading is caused by something that is directly identifiable. My next concern was the fact that it is simply not logical to check blood glucose in an appointment setting as it adds no value to the goal of the appointment, which should be continuous diabetes care. Not surprisingly, after a few appointments and a conversation about patient outcome expectations in her practice, I decided she was not the doctor for me.

The judgment from this doctor stuck with me for quite some time. I struggled with finding another adult care endocrinologist because I would enter the appointment on full defense. I spent 10 years in this cycle – finally locating a doctor with diabetes who treats me as a human being rather than a, “health performance outcome.”

If you want to hear more about my story, if you want to work on re-framing the role of diabetes in your life, if you’re interested in current research regarding mental health and diabetes, you are in the right place. Please consider commenting, sharing, and subscribing.

I will be creating groups and pages on other social media platforms. Look for these additions in my upcoming blog posts in order to connect, chat, and share with me, my followers, and other PWD who understand that diabetes is a team sport and you do not have to do it alone.