Neil Young is perfectly correct when he sings this….
“It is better to burn out than to fade away…”
- Hey, Hey, My, My from Rust Never Sleeps
I feel this way when it comes to diabetes burnout in general, and I had my own brush with online diabetes burnout a few weeks ago. Fading away (just ghosting from the online community and not coming back) is real. A few of my peers have done exactly that over the past ten years since the DOC took shape and I wonder sometimes what happened to them.
Did they have a bad experience online? Did they find they couldn’t connect or get their voice heard? Did they really intend on fading away… or are they just burned out?
On September 1, 2015, Diabetes Daily will be hosting the first ever Diabetes Social Media Burnout Day...a day in which we can all blog and discuss how we “personally maintain our own emotional wellbeing within the bustling, passionate Diabetes Online Community.”
Here’s the challenge: Think about how you deal with social media issues relating to diabetes and how you internally deal with it.
Do you shut down? Step away? Dig in? Reach out? Do you have a story to share? Do you have advice?
You don’t have to have a blog to discuss this topic.
This is what Diabetes Daily is asking all of us to think about:
“Do you take breaks? Have you been the target of an attack? Felt bullied? Unappreciated? How do you heal, endure, recharge, or reconnect to find your own happy balance within this powerful and tremendous community? Share your tips for thriving/surviving burnout in the DOC on your blog, and in the comments section on DiabetesDaily.com’s burnout blog on September 1, 2015.”
And because the DOC isn’t just about blogs, you can share your thoughts on Twitter and Facebook using the hashtag above.
Fading away is OK. Burning out shouldn’t be.
Let’s think it over and talk about it on September 1.
I’ve said it before. Here’s proof. I may be many things, but I am not a medical professional. The choices that I make in my daily diabetes management, especially when it comes to medications, involve a lot of research and shared decision making with my CDE (who also happens to have Type 1 diabetes).
Please do not take what I say and freak out about what I am choosing to do or march into your health care teams office and demand to do what I am doing.
I began taking Invokana about 3 months ago. It’s a sodium-glucose co-transporter 2 inhibitor. Big words for a little pill. This drug works to lower blood glucose levels by preventing the kidneys from reabsorbing some of the filtered glucose in the blood. That filtered glucose is then… excreted. (You pee it out.)
It’s also prescribed for people with Type 2 diabetes and “not indicated for people with Type 1 diabetes.”
But I knew that some individuals with Type 1 had been prescribed it off-label and saw dramatic results. I asked them privately about their experiences. About a year after I did my original research and inquiry, I approached my CDE.
My A1C didn’t suck, but I was having difficulty with my post-prandial spikes (and subsequent lows), even with pre-bolusing. One of the benefits of taking Invokana as a Type 1, I was told, was the flattening out of the post-meal spikes. That was what I was after.
Why didn’t I choose a medication approved for Type 1s? Because the side effects for that drug were worse than the benefit, given the fact that my stomach is pretty sensitive to start.
My Experience with Invokana
The pill is taken in the morning immediately before my first meal of the day. For someone who isn’t a big breakfast eater, that was my first adjustment. (So, I’m thugging it and it’s a win.) Having the luxury of watching my CGM graph throughout the day, I immediately saw the impact. The post-prandial spike didn’t happen. It was more of a bump. And because I didn’t overcorrect (and I am prone to do…), there wasn’t a low following the high.
Yes, I pee a little more. But because I MUST drink more water to help flush out the glucose, I am also more hydrated than I’ve ever been. (And I’ve… shock… cut down on the amount of Diet Coke I drink.) So, thanks Invokana, for helping me get my daily water dose!
The highs I do have aren’t that high anymore and the lows that I have aren’t that low anymore because I’m not chasing and overcorrecting. I’m happy that it’s working for me.
Not Everyone Has The Same Experience
It’s worked for me, but it doesn’t work for everyone, just like most drugs.
There are downsides: you are at increased risk for urinary tract infections yeast infections (both men and women). You must be able to drink a lot of water, as this drug can cause dehydration. It can also cause hyperkalemia (high potassium levels in your blood), which can be really, really bad.
If you’ve got any kidney or liver issues, it’s a no-go for the prescription. And if you are planning on becoming pregnant or are breastfeeding… nope. Don’t take it.
Last, but certainly not least, the latest info out has shown that people with Type 2 and Type 1 are at a higher risk for eDKA.
eDKA - Euglycemic Diabetic Ketoacidosis
What’s the difference between DKA and eDKA? Blood glucose levels. In DKA, you’ll find elevated blood glucose levels causing the high level of acidic ketones in the blood. In eDKA, you can have a blood glucose level of 100 mg/dl and still have a high level of ketones. Unlike mild DKA, which people sometimes treat at home with the advice of a medical professional, eDKA is an immediate ER trip, because it can’t be treated at home.
What’s scary about this is simply the lack of knowledge that most Type 2s have about what diabetic ketoacidosis is… they don’t normally have this issue to worry about. (When a Type 2’s BG is high, they can have diabetic hyperglycemic hyperosmolar syndrome without ketones.) If they don’t know what the symptoms of DKA are, they might just assume they have the flu or a stomach bug… and this is incredibly dangerous and possibly fatal.
Even some Type 1s are unaware of what DKA is, how to test for it, and what to do about it, which is why prescribing Invokana to a Type 1 who may not understand how crucial it is to check ketones the minute one starts feeling off is not wise. And even those who do know can still end up in the hospital, because no one expects to be in DKA with a blood glucose level of 113 mg/dl.
Most of the eDKA has occurred after an increase in the Invokana dosage, surgery, illness, or a large reduction in insulin. (My daily insulin reduction has been about 30%, but some have had more…)
Will I Continue To Take Invokana?
Yes. In the three months I’ve taken it, my A1C dropped 4/10th of a point. May not sound like much, but for me, that brought me to my lowest in a long time, and more importantly, the lowest without major hypoglycemia. I’m spending more time in my blood glucose target range, which is exactly where I want to be.
Be an activated patient. Talk with your medical care team about what’s going on with the latest research, what’s on the horizon, and what you can do together to be healthy. If your care team doesn’t know what’s going on in diabetes, you can either do the research yourself and talk about it at the next visit… or find a care team that does.
There are a lot of different ways to manage diabetes. One person’s way may not be yours, but it may send you on a journey to find yours… All you need to do is ask and share your knowledge!
Here are seven noteworthy diabetes clinical trials recruiting now that you might want to look into and see if you (or anyone you know) might be eligible to volunteer.
Click on the titles of each trial to get more info straight from the ClinicalTrials.gov website.
(Remember… some clinical trials may have you take a placebo in lieu of the investigational drug. Some clinical trials may require extra visits, invasive testing, and travel. You need to think about what the benefits and risks are for trial participation. That being said… nothing ventured, nothing gained.)
Repeat BCG Vaccinations for the Treatment of Established Type 1 Diabetes
The purpose of this study is to see if repeat bacillus Calmette-Guérin (BCG) vaccinations can confer a beneficial immune and metabolic effect on Type 1 diabetes. Published Phase I data on repeat BCG vaccinations in long term diabetics showed specific death of some of the disease causing bad white blood cells and also showed a short and small pancreas effect of restored insulin secretion. In this Phase II study, the investigators will attempt to vaccinate more frequently to see if these desirable effects can be more sustained.
Eligible volunteers will either be vaccinated with BCG in a repeat fashion over a period of four years or receive a placebo treatment. The investigators hypothesize that each BCG vaccination will eliminate more and more of the disease causing white blood cells that could offer relief to the pancreas for increased survival and restoration of insulin secretion from the pancreas.
If you’re interested and meet the criteria (and the location, as the trial is being conducted in Boston and requires weekly injections for the first year… don’t know if you can do this at home…), you should send an email to: email@example.com
This is Dr. Denise Faustman’s lab and website. Check out the details and what she’s doing.
Multiple Daily Injections and Continuous Glucose Monitoring in Diabetes (DIaMonD)
Evaluate if addition and use of real time continuous glucose monitoring (RT-CGM) improves glycemic outcome of patients using multiple daily injections (MDI) and self monitoring blood glucose (SMBG) testing, who are not at target glycemic control.
If you are on multiple daily injections, this might be a great opportunity to participate in a really interesting study if you are willing to wear a continuous glucose monitor (CGM) and possibly a pump. Check out the inclusion/exclusion criteria and locations, then send an email or call to either:
|Eileen Casal, RN, MSNfirstname.lastname@example.org|
|David Price, MDemail@example.com|
A Trial Comparing Continuous Glucose Monitoring With and Without Routine Blood Glucose Monitoring in Adults With Type 1 Diabetes (REPLACE-BG)
The primary objective of the study is to determine whether the routine use of Continuous Glucose Monitoring (CGM) without Blood Glucose Monitoring (BGM) confirmation is as safe and effective as CGM used as an adjunct to BGM.
This study will determine if we can actually make treatment decisions based on our CGM alone when we feel it is accurate, not verifying it with a finger-stick blood glucose check.
This. Is. Huge.
Why? Because one of the reasons why Medicare, Medicaid, and some insurance companies refuse to pay for a continuous glucose monitor, claiming it’s just an adjunct to a blood glucose meter and we still have to check to make treatment decisions. (And we know better, don’t we?) This trial has a lot of inclusion and exclusion criteria, but seriously… if you can do this, you will help the entire T1 diabetes community get access to this device.
Contact either person for more info:
|Katrina Ruedy, MSPHfirstname.lastname@example.org|
|Nhung “Leena” Nguyen, MPH, CCRPemail@example.com|
Glucose Variability Pilot Study for the Abbott Sensor Based Glucose Monitoring System-Professional
This is to trial the Abbot Libre system, which is a sensor with “flash monitoring” for individuals with Type 2 diabetes. How cool is that? They currently need participants in the following locations: San Diego, Detroit, Kansas City, MO and Pearland, TX. If you meet the criteria, shoot Dr. Karinka an email for more info and get enrolled.
|Shridhara Alva Karinka, Ph.D.||firstname.lastname@example.org|
A Study To Assess The Safety Of PF-06342674 In Adults With Type 1 Diabetes
If you are a newly diagnosed (within the last two years) adult (over 18), you can participate in a Phase 1 clinical trial for a biological drug, examining safety issues. Again, look at the criteria and locations, then if you are interested, call:
|Pfizer CT.gov Call Center||1-800-718-1021|
Please refer to this study by its ClinicalTrials.gov identifier: NCT02038764
In-Clinic Evaluation of the Predictive Low Glucose Management (PLGM) System in Adult and Pediatric Insulin Requiring Patients With Diabetes Using the Enlite 3 Sensor
This is a Medtronic study for their next step in the artificial pancreas technology pathway. (And hello… “Enlite 3 sensor!”)
All subjects will undergo hypoglycemic induction at Visit 2 with target set to 65 mg/dL using the rate of change basal increase algorithm. Low Limit setting when PLGM ON is 65 mg/dL.
The more patients willing to participate in artificial pancreas technology trials, the faster this technology will become available! Take a look at the locations and criteria and if you’re able to do this trial, contact:
|Julie Sekella||(818) email@example.com|
Along those same lines…
Hybrid Closed Loop Pivotal Trial in Type 1 Diabetes
This is a BIG. DEAL. for people with diabetes in the United States. If on this trial, you get to wear the MMT-670G insulin pump, using it with the closed loop algorithm.
Closed Loop. Closed Loop. Need we say more?
Contact: Thomas P Troub(818) 576-3142 firstname.lastname@example.org to get involved.
There are so many studies out there that need our help. We help ourselves AND all people with diabetes. Do what you can. If you can’t participate, share this post with someone who might be able to volunteer.
Vegetables and I have not been fast friends over the years. I enjoy their company when they’re accompanied with cheese or if they’re prepared so exotically that they coax me into trying them. If they’re in season, at their peak of popularity, I’ll throw a few vegetables in the shopping cart. But we’re not best buds.
It’s not because of diabetes, but there is a correlation. After my diagnosis, I became well acquainted with the Diabetes Exchange Diet. If you’ve ever had the pleasure of hearing: “You can have 1 milk, 2 breads, 1 meat, and 1 fat for breakfast,” you’ll know where this is leading…
Some vegetables AREN’T vegetables.
Peas, according to school lunch, are vegetables, but not to the Diabetes Exchange Diet. Same went for corn and potatoes. Vegetables I liked as a kid. Vegetables that I ate. Now, I had to choose between a piece of bread and a 1/2 cup of corn or peas? Bread won every time. I loved V-8 juice, so my vegetable portion was often chugged on the way out the door… if at all.
Lettuce is also not a vegetable. It’s a “free food” along with cucumbers and celery. (But one tablespoon of dressing is considered one fat. Do you know how little and sad that tablespoon of ranch dressing looked?) I wanted food that had ballast. Not rabbit food. I was starving. Always starving. (Remember that my diabetes management wasn’t management at all; it was chaos.)
It didn’t take long for me to turn my back on vegetables. Even after I stopped denying myself insulin and got my head together (or as together as it’s going to get), I just never thought to myself: “Hmmm… a bunch of veggies would hit the spot right about now.”
But I’m older now. Wiser. I’m trying to cook more (and in doing so, blew up my stove, but I don’t think it was my cooking…) and from scratch. We’ve had hits and misses, but I wanted to switch it up a bit.
Enter The Thug
Across my Facebook feed one day came this video…
(Warning - while hysterically funny, it’s also not appropriate to play at a loud volume at work, around small children, or easily offended by the use of any swear worse than “gee willikers!”)
My fingers practically tripped over themselves rushing to order Thug Kitchen so I could, as they put it, eat some goddamned vegetables.
This cookbook has no meat, no eggs, and no dairy in any of the recipes. I’m cool with that, but some people might not be. What is in abundance is profanity, so if you’re not cool with that, this cookbook might not be for you.
In the few weeks that Thug Kitchen has been in my possession, I’ve made some small changes to what I eat that have made an impact on my daily diabetes management: one involves vegetables and the other doesn’t.
It was almost like a vegetarian Dr. Seuss Green Eggs and Ham question : “Would you try a green smoothie?” Neither of us seemed thrilled, but neither of us would admit it. We followed the recipe (which involved spinach, lots and lots of spinach) and lo and behold, much like Sam I Am’s friend… we loved it. And most importantly, it didn’t spike my blood sugars like I thought it would, even with the addition of fruit. I think that all my previous smoothie attempts in the past failed because I used regular milk and yogurt. This recipe? Filling and no spiking.
I broke our old blender because I’ve been making so many smoothies. (Wait… I blew up the stove, broke the blender…is the universe trying to tell me something?) We got a hefty, hearty, Sons of Anarchy strong blender replacement. Breakfast or lunch, I’m getting veggies in a swirly concoction.
I have long been a “get a coffee in me before I can function” individual and that’s usually the extent of my breakfast. (Yes, I know. Bad.) But I know exactly how much to bolus for how I like my coffee and no spike. Everything else is a toss-up until now.
Hooked now on the oatmeal recipe in Thug Kitchen and no.freaking.spike. Yeah, it takes a little while to make, but I do a huge batch and shove it in the fridge for later in the week. I get a warm belly, a slow-digesting breakfast, and I feel better. (No veggies in the oatmeal, just to be clear.)
Slowly Thugging Diabetes
I’m not shilling the cookbook. I’m talking about how I’m slowly thugging my diabetes.
Making small changes to my diabetes management over the last few months has been eye-opening. Different ways to bolus, to eat, to include yoga and some very mindful mediation, down to adding a medication that I never thought I would. And the result?
The lowest A1C I’ve had in years and not a single severe hypoglycemic episode in the last few months.
We aren’t meant to act like a major organ 24/7/365. (Well, some people can act like a big glutenous muscle…) We weren’t meant to calculate and regulate and feel guilty if we don’t get it right.
I’m thugging my diabetes, small change by small change. All of us can thug diabetes, whether it’s making a conscious decision to eat more veggies or walk a little further (or start to walk!) or try something different. What works for me may not work for you, but what works for you might work for someone else.
How are you thugging your diabetes? What do you want to try? I’d love to hear from you!