Desperately Seeking Diabetes Nanny.
Wonderful opportunity for the right individual.
Duties include, but are not limited to:
- Cajoling me to check my blood sugars, even though I wear a CGM and am sometimes lulled into a sense of false security
- Showing me that sometimes, a CGM can be wrong but that it’s OK
- Forcing me to sit and calculate how many carbohydrates will going into my mouth, factoring in the fat and protein content with that wild card of how much insulin I currently have on board and how much exercise I might be doing in the near future (or how much I did in the distant past) and if it’s that time of the month or if I’m not feeling well or… at least telling me that it’s OK that the amount of insulin I take is based on too many factors to nail it every time
- Waking me up when that alarm goes off, signifying a low blood glucose level in the middle of the night, because I might be sleeping peacefully and soundly (Because who needs an uninterrupted night’s sleep? Not this woman.) and stuffing me with glucose when I tell you that I’m perfectly fine
But wait… there’s more!
- Ensuring that I have, in my possession, before I leave the house: my meter, my strips, emergency glucose that doesn’t taste yucky (Glucolift, FTW), back-up insulin to inject if my pump fails, an extra pump cartridge, an extra infusion set, a snack in case I get caught somewhere and can’t get something to eat
- Willing to navigate the labyrinth called the U.S. Healthcare system with its endless medical necessity letters and insurance claims that get kicked back and the multiple phone calls required to get a straight answer about what is covered and what isn’t covered
- Patting my hand (or covering my mouth) when someone makes an ignorant comment about diabetes and I have to give the elevator speech about what diabetes is and isn’t, how we get it and how we don’t, and that sugar isn’t our enemy (our pancreases are)
- Pushing me to stand up and take a stand when I see injustice in the world: lack of access to the drugs, devices, and services that can keep people with diabetes healthy - and alive
Let’s not forget this part of the job!
- Holding me tightly when I am drenched in sweat, shaking, and unable to wait that proposed 15 minutes before ingesting another 15 or 30 grams of carbohydrates after a gut-wrenching low blood sugar - or when I am lethargic, thirsty, and bitchy after a high blood sugar that came out of nowhere
- Reminding me that complications can happen to everyone with diabetes, no matter how tightly or loosely controlled their management has been and that it doesn’t make me - or anyone else with diabetes - a “bad” person
- Lifting my head to look to the horizon for small, but important, advances in diabetes research to inspire me to keep going
- Consoling me when I learn of a life lost to diabetes
- Understanding that I will never be cured, even if a “cure” is found tomorrow, as the damage done to my body will stay long after diabetes is gone
- Keeping me sane when diabetes slows me down
Important aspects of being a diabetes nanny you should know about:
This is a 24/7/365 position.
There are no vacation days, sick leave, retirement plan.
You’ll get on-the-job training, as the manuals don’t seem to cover the day-to-day living with diabetes.
This job has been held by parents, friends, coworkers, spouses, and sometimes, strangers, but they can’t really explain what they did or how they did it. You’ve got to experience it for yourself.
You may not be angry at me (or the world) for having diabetes, although you can be angry with me.
Did I mention that this is an unpaid position and no opportunity to advance?
Whiners and martyrs need not apply.
Applications being accepted now.
Whether you physically sat in the room at the Diabetes Advocates Forum or joined us there in spirit, I tell you now. It ends with us.
We will be the ones to end the feelings of frustration with diabetes, the barriers to affordable access, the misconceptions of this disease, and in the future, the disease itself. However long it takes, whatever needs to be done, it ends with us.
After two days of intense, emotionally-charged meetings between key members of the Medtronic Diabetes team and invited diabetes advocates, this phrase is what remains in my head.
It ends with us.
Bold statement, you say. Brash statement, you say.
About time, I say.
I understood before the meetings began that we would be discussing the new Medtronic Minimed 530g with Enlite and discussing diabetes advocacy, but beyond that, no clue. I knew that Medtronic Diabetes and Bayer HealthCare had selected members of the diabetes online community (DOC) regardless of insulin delivery system and CGM choice. (You heard Dexcoms and different beeps and boops going off throughout the sessions. Ahh, the sultry song of diabetes.)
Those who attend as well as those who don’t often wonder why these individuals were chosen to represent the diabetes contingency. (I see the questions on Twitter and the comments on blogs and other social media portals.) I still don’t have an answer on that, but we all had one thing in common: passion.
And that passion wasn’t just coming from the advocates. It came from almost every person I encountered with a role at Medtronic Diabetes. They do want to know what we think, not just about their products and how they present them (and we didn’t disappoint in our answers, believe me), but about how they can help. Not air quotes help, but real how-can-we-use-our-voice-to-help.
Not once did they try to sell us something. Not a product or a line or lip service. The Medtronic Diabetes representatives were frank and forthright, matching the honesty of the attendees. I heard apologies for missteps and long waits for better CGM sensors for their products. I heard requests for better ways to communicate. I heard agreement towards greater participation with advocates to reach goals.
There was laughter. And tears. And a lot of beeps. We all scribbled on notepads and tapped on smartphones and laptops. Sessions occurred in which decisions about future advocacy initiatives were identified and visions questioned for clarity. Some of my moments of ah-ha! came not in the meeting, but in sidebar conversations. Advocacy happens everywhere.
I’ll get to the nitty-gritty of what happened in later posts, but I flew home with that feeling in my gut that burns deep.
It ends with us. All of us. Not just advocates, but everyone who is passionate about ending. That includes Big Pharma and device manufacturers and government. Us. There is no longer a “them”.
And in order for it to end with us, it has to begin with us.
Get ready, because…
It ends with us.
Nine times out of ten, after someone learns that you have diabetes, questions will be asked. Some are not pleasant and downright rude. Others are kinder and seek to understand more about this often misunderstood chronic illness. One question that can be interpreted as either rude or kind is this one:
“What can you eat?”
Here’s my simple answer:
It’s obviously more complicated than that, but as a person with Type 1 diabetes, there is not a food on this planet that I am not permitted to consume. (There are many that you couldn’t pay me to try.) It’s a common misconception that we must never allow a doughnut to touch our lips or eat anything sweet, perpetuated by misguided self-promoting diet gurus and the manufacturers of sugar-free candy. I believe those manufacturers secretly work to undermine the laxative industry. Don’t eat a lot of sugar-free candy in one sitting. Trust me on this.
Diabetic Exchange Diet
When I was diagnosed in 1983, it was the Diabetic Exchange Diet that was thrust upon us and one that was adhered to diligently until I went away to boarding school a year and a half later. It was based on a calculation of calories broken down into neat categories: Meat, Bread, Fat, Fruit, Vegetable, Milk, and Free. (To this day, I subconsciously think to myself as I drink a glass of milk: “I could have traded this for a Meat and a Bread.”) We weighed and measured meticulously and I injected the same amount of insulin every day. It’s still used by some people with diabetes, but I have never been a fan.
I hated it. That “diet plan” got chucked quickly to the curb when I was on my own at school making my own food choices. (Let’s just leave it at… I was in a rebellious phase.) My relationship with food has always been a rocky one, but I will tell you that now, it’s better. Thanks to carbohydrate counting and the ability to dose insulin based on my blood sugar levels and the number of carbs I ingest at a snack or meal, I eat what I want and when I want.
My life changed shortly before I began insulin pump therapy. (“So, insulin pump… tell me about your mother.”) I began to use a sliding scale when injecting multiple daily doses of insulin to keep my blood sugars in range. I sat with a dietician who rocked my world with the revelation that as long as you understand the carb count (and the intricacies of carb counting, which while simple in theory, is not in practice), you can accurately match your insulin intake to your carbohydrate intake. Once my insulin pump and I were joined at the hip (sometimes literally), eating was no longer looked upon as a choice between “eat what your diet plan says you can eat and feel good about yourself” versus “eat what you want and feel guilty”.
Before you go all willy nilly bellying up to the buffet bar, know that you still need to know how many calories you should be ingesting and other tidbits that a registered dietitian works magic with your food. Here’s an nifty article on carb counting from Joslin Diabetes Clinic.
Then, there’s the glycemic index. Hat tip to wikipedia, for defining it simply:
The glycemic index, or glycaemic index, (GI) provides a measure of how quickly blood sugar levels (i.e., levels of glucose in the blood) rise after eating a particular type of food. The effects that different foods have on blood sugar levels vary considerably.
Foods can be defined as low-, medium-, or high-GI. Low-GI foods will raise your blood glucose levels more slowly and steadily than high-GI. When you make food choices, the type of “GI” category can make a difference in insulin dosing and blood sugar excursions.
If you are interesting in learning more about the Glycemic Index and how to factor it in to your existing food choices, my first choice of website has always been this one by the University of Sydney. (There are a ton of books out there, but I can’t recommend one…) While not everything I ingest is low-GI, I do make small efforts - sourdough over white bread, brown rice over white, etc.
You Said That You Can Eat Everything. Explain That!
I can eat everything. If I want to have ice cream, I have some. I try to get the carb count and dose appropriately and enjoy a little bit. I do not eat two pints of Ben & Jerry’s Red Velvet Cake in one sitting. Cheesecake? Sure. A small slice, not the whole round. Chocolate must be the good “high end” stuff and not sugar-free. (Again. They are laxatives in disguise and they taste just as appetizing as Ex-Lax.)
Everything in moderation is the motto I try to live by when it comes to food. I know that some foods will send my blood glucose on a five-ticket roller coaster ride for hours, but I still eat them occasionally. Why? Because I can. (Does that sound like a cranky toddler? Probably, but I’m an adult and I still hate being told what I can and can’t do.)
I avoid daily consumptions of foods that I know will not help me in the long run. I prefer chicken to huge hunks of fatty meat (bacon is in another category…) and yogurt and I love each other very much. Do I indulge in a juicy steak on occasion? Yep. But like I said, everything in moderation. Peanut butter cups and crème brûlée every day isn’t healthy for anyone.
To Each His Own
I’m one person with diabetes. I have met individuals who are happy following a food plan to the letter. I have met individuals who live with celiac disease and deal with extra restrictions but still enjoy food choices.
So, as you are sitting down to eat a cupcake to celebrate something important (Like, “It’s Tuesday!”), after checking your blood glucose and dosing appropriately, and someone asks you: “Can you eat that?”, smile and say:
“I am person with diabetes. I can eat anything.”
Are you following me on Twitter?
The DAM series is part of Diabetes Awareness Month, because despite what you think you know, you don’t know everything. Neither do I. Let’s learn together.
For those who have diabetes, it’s frustrating that the outward physical manifestations of hypoglycemia or hyperglycemia do not effectively translate the emotional turmoil inside. While we don’t want to live in fear of the disease and often fight to keep within a normal range, there are days when no one around you “gets it”.
The same can be said for those who care for (or about) people with diabetes. Parents and spouses must stand on the sidelines, cheering when things are good, coaching when times get rough, and stepping in to assist when needed. For them, it’s just as difficult because no one around them “gets it”.
I am thankful that we live in the Information Age, when we can not only get the latest research and news about diabetes, but also diabetes emotional support with a few keystrokes from those who “get it”. If you are unfamiliar with these diabetes community online support sites and are looking for an ear, a shoulder, or a hand to hold, you’ll find them here. (You won’t find a pancreas. Apologies if you were looking for one.)
Online community support is different than individual diabetes blogs or news sites, which I’ll cover at a later time. If you think I’ve missed one, please leave them in the comments section to be added. These are my favorites…
- Tudiabetes.org - Over 30,000 participants share their thoughts, questions, fears, and hopes. If it’s diabetes related, you’ll find it here. (As part of the Diabetes Hands Foundation, they’re also in the midst of The Big Blue Test, so it’s a great way to get involved.)
- Dlife.com - There is a support forum component to the Dlife.com website that I find to be helpful for answers to questions.
- Childrenwithdiabetes.com - Hands down, this is the place to go for support if you are a parent of a child with diabetes. It’s a little light on the adult diabetes support, but so amazing for parents.
- Myglu.org - About 7,500 users of the T1 nature. They have some interesting insights.
- Juvenation.org - Another T1 only site with both parents and people with diabetes.
- #DSMA - Twitter, Wednesday nights at 9pm Eastern is the place to be to talk with other people with diabetes in their lives (T1, T2, and T3…)
These are the online diabetes community support sites that I believe are helpful for when you feel alone. Because lonely is not a good feeling to have with diabetes. I should know. I’ve been there.
I get it.
A blood sugar or blood glucose level is the number that often gets spouted off by a person with diabetes (or a family member or a medical professional), telling the world how much sugar is rolling around in their body. (It doesn’t really roll so much as swim. Backstroke or doggy paddle? Have no idea.)
For those of you whose beta cells didn’t take early retirement, your blood sugar levels consistently stay between 70 and 130 mg/dl. Doesn’t matter how much you eat, don’t eat, run a marathon, or watch TV all day. Your body does what it’s supposed to do - regulate your blood sugar levels so your body and your brain have the right balance of glucose in your system so you live.
Not quite so easy for those with diabetes. We have to do
a little a lot a huge stupidly gargantuan amounts of work to keep our blood glucose levels within a range that is doable.
Let me start off my explanation of blood sugar levels by channeling one of my favorite people, Bennett Dunlap:
“Your Diabetes May Vary.”
Every person with diabetes has their own version of what their optimum blood glucose level range is - and that’s between the PWD (person with diabetes) and their medical team. The various experts have interesting ideas on what should be the right range:
The American Diabetes Association says:
- Prepranidal (which is a fancy word for before eating a meal) blood glucose: 70-130 mg/dl
- 1 to 2 hours postprandial (again, fancy word for after beginning a meal) blood glucose: less than 180 mg/dl
- A1C: Less than 7%
Joslin Diabetes Clinic gets a little more detailed:
- Fasting blood glucose: less than 100 mg/dl
- Preprandial blood glucose: less than 110 mg/dl
- 2 hours postprandial blood glucose: less than 140 mg/dl
- Bedtime blood glucose: less than 120 mg/dl
- A1C: Less than 6%
* Note that Joslin says at the bottom of the page that this comes from information obtained from Joslin Diabetes Center’s Guidelines for Pharmacological Management of Type 2 Diabetes.
But wait… it gets more confusing. If you read their Clinical Guidelines for Adults with Diabetes (updated 2/2013), it says this:
- Fasting blood glucose: 70 to 130 mg/dl
- 2 hours postprandial blood glucose: less than or equal to 180 mg/dl
- Bedtime blood glucose: 90 to 150 mg/dl
Then there is the Pre-Existing Diabetes with Pregnancy Clinical Guidelines (updated 6/2011):
- Fasting and premeal glucose: 60 - 99 mg/dl
- 1 hour postprandial blood glucose: 100 - 129 mg/dl
These ranges also change for older individuals with Type 1 diabetes, young children with Type 1 diabetes, PWDs who have complications, etc.
The end goal for a person with diabetes is to die happily at a ripe old age with as few complications as possible. Sort of the opposite of: “The person who dies with the most toys, wins.” Having a target blood glucose range is a start, but there’s so much more than just checking blood glucose levels - once you have the number, you need to know what to do with it. I’ll be sharing my thoughts on that in the next few days…