One Year into DIY Looping

One year ago, I built a DIY hybrid-looping insulin pump, using my Dexcom G6 and Omnipod. For those who aren’t in the know, DIY “looping” is basically “hacking” your insulin pump with a single-board computer, such a Raspberry Pi or Riley Link, to make it communicate with an existing continuous glucose monitor (CGM) to make basal adjustments accordingly.

It’s important to note that this is NOT FDA approved, but the #WeAreNotWaiting community has been sharing information on how to build your own DIY looping insulin pump for years now, and I took the plunge in 2019.

In July I celebrated one full year on my looping system, and wanted to share my thoughts on 365 days of looping.

I Still Have Diabetes

I remember when I first set up my Riley Link and switched on “auto-mode.” I had this magical vision of never counting carbohydrates again, limitless runs without lows, and forgetting what the thirst of a high blood sugar felt like. Then I realized, just as quickly, that I still have diabetes.

Even though my Dexcom continuous glucose monitor (CGM) readings now communicate with my insulin pump and make basal adjustments accordingly, the “hybrid” part means that it doesn’t anticipate, nor account for, any carbohydrates eaten. I also need to tell my pump when I’m about to exercise, and for how long. Since the insulin pump does not operate on artificial intelligence (AI), it cannot anticipate what I’ll do next.

So yes, I still have lows on runs and I still have highs when I eat something that isn’t appropriately accounted for. I still have to count carbohydrates and no, I haven’t forgotten what the Death Valley-like thirst of a 350 mg/dL feels like, although it happens less frequently.

My HbA1c Isn’t That Much Lower

I have always been maniacal about tight diabetes control. My A1cs have hovered in the low 6s for the last 10 or so years. With Loop, I immediately thought that my control would be *perfect* and I would ride out the 4s and 5s into an eternal sunset. NOPE. My latest A1c was 5.9%, which I am rightly ecstatic about, but it’s less than 1% point lower than I was on MDI and a CGM.

The key difference is that my time in range has increased from around 30% to 75%, and the number of lows that I experience has gone down from around 3 per day to 3 per week. It’s easy to have a low HbA1c when you have highs and lots of lows to average it out- it’s much harder (and healthier!) to have a lower HbA1c with few lows. And plus, I just feel healthier. And that has made all the difference.

Dexcom graph by Christine Fallabel

It’s a Mental Vacation

Being a human pancreas 24/7/365 is not easy (why didn’t anyone tell us this at diagnosis?!). In addition to running a household and having a full-time job (and texting everyone back, and maintaining some semblance of a fitness routine, and trying to eat something green at every meal), being an organ all of the time is hard work.

More than anything, a year into looping has given me the mental break I didn’t know I needed. Sure, I still have to count carbohydrates, adjust for exercise, and dose for meals, but hours can go by where I don’t think about diabetes at all, and that never used to happen. My mental distress has gone way down, and I don’t experience diabetes burnout at nearly the frequency I used to. This also helps maintain my motivation to continue to take care of myself and my diabetes.

Dosing Is More Discreet

As I make my way through my 30s, this is less of an issue (if you have a problem with me dosing in public, the problem is you, not my diabetes), but looping has definitely made checking my blood sugar (read: checking my phone) and dosing (also read: checking my phone) way more discreet in public than manually testing my blood sugar and dosing used to be. It’s also more hygienic (I change my insulin pump with plenty of alcohol swabs every 3 days from the comfort of my home), and more convenient. This is perfect when I’m out at a crowded concert, or squeezed into a small table at a restaurant.

It can also cause issues. For instance, if I’m in a public place where cell phones aren’t allowed, sometimes it’s difficult to explain that my iPhone is actually durable medical equipment (DME) that I need to survive. Let’s just say there have been some teachable moments.

Loop app screenshot by Christine Fallabel

I Am Happier

When I was diagnosed with type 1 diabetes in June of 2000, my doctor told me that the cure was just 5 years away. I thought the cure was just around the corner, we all did. And learning that the “cure” is still out of sight, 15 years hence, has been a hard pill to swallow.

I’ve dealt with anxiety and the impending depression of only someone who has a chronic disease with no cause and no cure can experience, but having something like Loop feels like someone is finally on my side, looking out for me, and making things just a little bit easier when the load becomes too heavy of a burden to carry. I can go to sleep and know that my basal will immediately shut off if I start to go low overnight. I can relax if I’m digging into dinner at a friend’s house and I don’t know the exact carb count for a meal, knowing my basal will tick up to cover the difference.

Having a Loop feels a little bit like you have a certified diabetes educator (CDE) and best friend just sitting on your shoulder, making constant adjustments, never judging, and ensuring that you have a better go of it, a little bit of help when you need it. And that help has been life-changing. The cure may never have been 5 years out, but with Loop, I finally feel okay waiting just a little bit longer.

Do you DIY Loop? How has your experience been? Share this post and comment below; we would love to hear from you. Follow the #WeAreNotWaiting hashtag on Twitter to learn more about the DIY movement.

Source: diabetesdaily.com

Be Prepared and Know Your Rights: Your Guide to Protesting With Diabetes

This content originally appeared on Beyond Type 1. Republished with permission.

Editor’s Note: It is an extremely personal decision to protest, and Beyond Type 1 neither endorses nor opposes any person living with diabetes’ participation. This guide is to help those who choose to protest do so as safely as possible.

Protesting is one of many ways to create change and is a right of all Americans under the First Amendment. But if you have diabetes, there are extra things to consider, particularly amidst COVID-19.

Having diabetes – type 1 or type 2 – presents challenges in daily life already; adding a challenging environment with risk of exposure to a virus makes things more complicated. Because of that, you may choose to lend your voice to the things you care about from home, which is also impactful.

However, if you are heading out to protest, here’s what you need to know.

Be Prepared

Step 1: Make sure you are healthy enough and prepared to participate.

Consider the state of your health over the last few days and weeks. The best circumstances under which to attend a protest are when your blood sugars have been stable, you have been eating hearty and nutritious meals, you are well-hydrated, your immune system is strong, and your mental health is fortified.

Step 2: Pack a bag.

In addition to the standard items suggested for all protesters, like extra masks/face coverings, cash, your health insurance card, permanent markers, water, and snacks, there are extra things to consider if you have diabetes. Remember that you may get stuck away from home for a longer period of time than planned.

  • Double down on water. While heavy, staying hydrated can keep your blood sugar levels more manageable and can prevent other health issues. When volunteers or street medics offer more water, accept their offer.
  • Bring a variety of snacks, with a combination of carbohydrates and protein, and glucagon (nasal or injectable kit). It is helpful to have both fast-acting glucose, like glucose tabs or gels, to raise your blood sugar quickly if you experience a low, as well as more substantial snacks to consume periodically to keep your blood sugar stable. Ensure that the people you’re going with know how to use glucagon, including what personal signs of a low blood sugar you experience that they can look out for.
  • Pack extra blood sugar monitoring supplies. Even if you have a continuous glucose monitor (CGM), it is possible for your sensor to fail or become inaccurate due to heat causing your adhesive to loosen or jostling from being in a crowd. With either your CGM or glucose monitor, make sure you are checking your levels often. If you have a closed-loop system and can utilize an ‘exercise’ setting to keep your blood sugar levels slightly higher (typically around 160 mg/dL), do so.
  • Include a back-up insulin delivery method. If you wear an insulin pump, bring insulin pens (with extra pen needles) or vials and syringes. If you utilize injections, make sure you have more supplies than you typically need. Consider packing in a small cooler system/insulated bag to keep your insulin cool.
  • Write down your medical information on index cards kept in the outer pocket of your bag. This should include your medical background information (all medical issues you live with), your medications, and the contact information for your healthcare provider and emergency contact.
  • We are still living in a pandemic, so pack extra face masks, hand sanitizer, and disinfecting wipes. If you accept water or snacks from volunteers, ensure you sanitize surfaces, like the opening of a water bottle. COVID-19 is challenging, but made more challenging by diabetes management. Minimize your risks to stay safe. 

Step 3: Wear protective articles of clothing + a medical alert item. 

Wear a mask or face covering, long pants, comfortable closed-toed shoes, a long sleeve shirt, a hat and/or sunglasses, plus a medical alert item, like a bracelet or necklace.

  • If you do not have a medical alert item, write your alerts on your arm using permanent marker. This could something like “insulin-dependent, type 1 diabetes.” Your alerts should be as clear as possible, helping a person completely unfamiliar with diabetes be more aware of your health background.
  • Protective clothing – long sleeves, sunglasses, hat, etc. – shields you from the sun, and will also provide a barrier for your skin in case tear gas is deployed. A primary component of tear gas is capsaicin, a chemical compound derived from chili peppers. As tear gas (made from fine particles) is absorbed by your skin, it can produce extensive amounts of inflammation. This can lead to health issues in anyone, but can lead to issues with blood sugar, extra pain response, and dehydration for people with diabetes.

Step 4: Have a buddy and communicate.

No one should go to a protest alone if possible, but particularly no one with an underlying health condition. Ensure you attend a protest with someone you trust, who knows you have diabetes, and can help look out for the signs of low or high blood sugar. Ask them to remind you to drink water and eat. Create a plan for where and when to meet if you get separated. Be clear about your limits and make sure you are in agreement about your boundaries. For example, if you are attending with someone who is willing to be arrested and you are not, you will no longer have your buddy system intact, which could lead to a safety issue.

Step 5: Take care of yourself when you get home.

Chances are you just walked a long distance and tensions were high. Hydrate and eat once you get back home or to a safe place. Your blood sugar may drop or rise in unexpected ways due to stress and exertion. Keep an eye on your blood sugar levels as much as possible. If you have a CGM with follow capabilities, ask a friend or family member to make sure their alerts are loud, particularly while you sleep.

Know Your Rights

Attending a protest carries the risk of being detained or arrested. Because of this, ensure you know your rights before you attend. Be aware that while everyone in the US has the same rights theoretically, being undocumented, a person of color, or belonging to any marginalized group – including living with diabetes – alters how you may need to approach interactions with members of law enforcement.

The following is summarized from the American Diabetes Association’s Inappropriate Law Enforcement Response to Individuals with Diabetes.

  1. If you get arrested, clearly and calmly state to the police officer that you have diabetes. If you are concerned about or nearing a medical episode – such as a low or high blood sugar event – while detained, communicate the circumstances to the officer. By law, if an officer has visible cues (such as clear signs of a low or high blood sugar) or has been given notice of a person’s medical condition, they must abide by the resulting rights that provides.
  2. You have a right to be able to take care of your health and receive medical assistance if and as needed. The Fourteenth Amendment grants the right of pretrial detainees (anyone who has been detained, arrested, or jailed) to adequate medical care.
  3. Under the Fourth Amendment, a police officer is not allowed to search or confiscate your belongings without a warrant or without probable cause. If a police officer believes they have probable cause, they must inform you of what they are searching, as well as what they are seizing. Consensual seizures are not prohibited by the Fourth Amendment, so you must state that you do not consent for your belongings to be seized. This all becomes more murky if the police officer can make a case that a severe crime was being committed, an immediate threat is being posed to the officer or public, or if you are resisting or otherwise evading arrest. Stay calm, be clear, and follow directions as much as possible.

Overall, if you are considering or attending a protest, safety comes first. Be prepared. Be careful. Know your rights.

Source: diabetesdaily.com

Driving with Diabetes is a Privelege

This content originally appeared on TCOYD: Taking Control of Your Diabetes. Republished with permission.By Steve Edelman I‘ve done quite a bit of medical legal consulting/testifying in cases involving people with diabetes, and several cases that I reviewed recently prompted me to write this note to all of you folks on a pretty serious topic. The […]
Source: diabetesdaily.com

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