Category Archives: Diabetes and Parenting

Parents Suffer But Children With Diabetes Suffer More

I’ve been active in the Diabetes Online Community for an entire decade, literally since my twins were born. I’ve noticed that parents suffer a lot due to having children with diabetes. I’ve always had compassion for this because I could empathize and did empathize with my own parents growing up–it is gut-wrenching to see your child develop and live with an incurable, life-threatening illness. I know what it feels like to grow up with diabetes as a little girl so when my little girl was diagnosed, I felt strong emotional and physical pain. Type 1 diabetes in a child IS hard on parents.

However, something I’ve long wanted to say that has more weight now that I’m also a parent of a child with diabetes is that parents do well to remember that no matter how much suffering you’re experiencing, it’s worse for your kid.

Since I was 10 years old, when my sister was diagnosed, I’ve heard the following from type 1 parents (I never heard my parents say these things, thank goodness):

“Kids are resilient, it’s so much harder for the parents”.

“I’m glad my child got it early, they don’t know life with type 1 so this is much easier.”

“Children are different, high blood sugar doesn’t bother them much.”

“It’s so tough for adults who are diagnosed because they didn’t grow up with diabetes and get used to the needles and everything.”

These comments, while they might be someone’s valid opinion, for which I’ve never received an explanation that makes enough sense to me, indicate a lack of empathy and ignorance on the part of the parent, towards the type 1 child.

Parents are adults (or ought to be) and so they have much more in the way of resources with which to cope with difficult situations. I’ve been the kid with diabetes and I’ve been the parent of a kid with diabetes and I think it’s harder to be the kid. You still have worry, fear, and increasing awareness about how diabetes affects your life and you have to deal with it without completed brain development and before you master many other tasks.

We look at children and they play, they smile, they laugh, and we tend to forget that deep down they think and feel very deeply. Often, we talk to others about how they’re doing and we’re only giving out our perception versus the reality according to that child. So we have to be aware that in the midst of our suffering, it is our child who lives with this disease. It will move out of your home one day, but not your child’s body. Your child knows that and so while you’ll get a break one day, they know they won’t. You’ll likely worry for them their entire lives, but it won’t be the same. In my case, I’ll live with it forever alongside my daughter but I can’t carry it for her so she’ll have to bear all her own burden and I have to respect that reality.

Amidst your suffering, don’t give your child the impression you’re suffering more than they are.

As a kid, it was annoying for me to hear adults tell each other about how their job was the hardest and the diabetic kids were just living it up as normal kids. I did the teenager eye-roll, which was invented precisely so that kids would have a way of physically coping with the desire to throw something across a room when adults showed they forgot what being very young was ever like. Kids don’t have an absence of suffering, they just show it differently.

If diabetes is bad, then more time with it can’t be good. Impossible. So, that’s my thinking on the topic of it ever being a good thing that someone gets it sooner versus later. Damage adds up over time. It’s simple arithmetic and statistics. Damage is bad and who knows what someone’s personal threshold is for damage turning into a complication.

High blood sugar still affects kids, even if they say they can’t feel it and even if they can still be good at sports like I was, despite running high numbers. Children struggle to pinpoint their symptoms, this is why pediatricians get trained in the specific ways children describe certain sensations. They also have acquired less potential for neuroticism in their short lives so you’ll not hear so much complaining from them the way you will from an adult. Deep down, the symptoms they feel affect them. And at a cellular level, they’re absolutely being affected, the effects of which may not be very noticeable until they’re adults who must now take on this huge burden of accumulated damage.

I’m constantly wowed by the things my kids say, evidence that I too can forget their capacity for nuanced and complicated thoughts and feelings at their tender age. What children with diabetes need (speaking as a former child with diabetes) is to be asked about how they feel and what they think. You might discover they don’t care if someone tells a diabetes joke (that outrage might just belong to you) and they might feel profoundly sad or tired. Try not to speak for them. Don’t tell others that your child is empowered and handling this well. They might feel that you’re misrepresenting their experience and that makes it hard for them to tell you if they’re having a particularly hard time–they don’t want to make you out to be a liar. Listening to them talk about their diabetes from their perspective is probably one of the most helpful things you could do.

The Challenges of Managing Two Diabetics

It’s been tricky managing my daughter’s diabetes alongside my own. Here are some things I’ve found particularly challenging:

There’s Only So Much Room Up There

There’s only so much space in my head and I’ve always hated taking notes and logging information. I have lower conscientiousness–in the form of organization skills than I’d like so I have struggled with laziness regarding doing these things.

But when managing my diabetes and my daughter’s, there just isn’t enough that I can reliably commit to memory. One thing that helps is that I’ve synchronized our schedules. We give insulin at the same time and eat at the same time (I homeschool so this works well). I also teach her what I’m doing as I do it and that helps me when I’m trying to keep things straight.

Double the Emotions

My daughter’s blood sugars are stellar but every so often when there’s a high or low and she feels awful, it doesn’t matter if I’m 80, I feel awful, too. And that’s been tricky to cope with because too much feeling awful is a recipe for a disaster. So I’ve been trying to just breathe and not get too caught up in those moments, as they are temporary. There are moments of despair though, like if I’m high and she’s low and our allergies are flaring and I’m trying to figure out if we can afford stuff and if I have the energy to pack more than one Frio with all the supplies and pre-cooked low carb food in a large backpack for a park on a hot day. Sigh.

Who Did I Just Inject?

It can be hard to remember who I just gave an insulin shot to. Especially around dinner time when I’m busy finishing a hot meal and setting the table and timing it all with my husband’s arrival from work. I’ve asked my daughter, “Did I just give you a shot or was that me?” Scary, right? I’ve had to nearly slap myself on some early mornings to make sure I’m fully alert and mindful.

Mindfulness is crucial. I have to make sure I don’t switch our doses. I can’t give her my basal or bolus dose without turning things into a life-threatening situation. So I’ve learned to inject only once I’m fully present. If I am not or if I’m rushing, I stop myself and wait until I can inject safely. If someone is talking to me I ask them to stop. If there is a lot of commotion, I remove ourselves to another room.

The same thing happens with checking blood sugar. “Were you 104 or was that me?” It’s easier to keep track of whose blood sugar is whose now that she checks her own blood sugar, though.

We have different doses, different insulin correction factors, different glucose needs to correct lows, and I have to remember my diabetes is very different from hers right now. I’ll go higher and lower much more easily so I can’t mimic her schedule completely. I have to remember to check more often and still remember to check her at the right times. She still makes some of her own insulin and I probably don’t.

Exhaustion

Sometimes I just get purely exhausted. This is mostly due to the physical hit I take from waking up in the middle of the night for our blood sugars. Now, in most cases like ours, I’d say the other parent should be getting up to check the diabetic child and that way everyone shares the “burden”. In my family’s case, my husband works 12 hour days doing hard, outdoor physical labor in construction with dangerous equipment, sometimes on high scaffolds–my point is that he needs to not be sleepy during the day so that he doesn’t make a critical error and lose life or limb (he’s already lost a tooth and his wedding band and almost lost an eye and a finger). You understand.

Some nights, I get up twice for my daughter and twice for myself and that kind of interruption to sleep is brutal if repeated too often within a week. My lymph nodes swell and I start feeling like I have a cold.

Master Mind I Am Not

Forgive me, the kids are really into Star Wars, lately.

Due to being the diabetes expert and stay-at-home parent, all the diabetes stuff automatically falls on my shoulders. My husband and I have a plan for using the weekends as training times for him because he needs to be able to do and know all I do and know. It’s intimidating for him because he sees that I get intimidated sometimes, and I’m an expert in living with type 1 and this is our dear little girl. But if we get a habit of synchronizing our giving insulin and stuff, him taking over on weekends seems like it can cause me to get out of my routine and screw up my flow, so there is a lot of creative trouble-shooting we’ll have to do to work things out. Mainly, I have to work hard to remember my own diabetes. You’d think this wouldn’t be an issue after so many years, yet here we are.

It’s hard to know exactly what it’s like unless one lives with type 1 and also manages it in someone else. If you’re like me, your mind is constantly analyzing and accounting for various factors like food, illness, stress, exercise, insulin doses, and more and when you’re doing that all the time for two people, it can be overwhelming and one person’s diabetes may suffer as a result. In our case, it’s been mine because that’s what parents do.

The Cost of Two Diabetics

The toughest part of everything is something I won’t go into too much because people paying for one case of type 1 diabetes can already imagine–the cost of two diabetics in one household. I grew up with a type 1 sister and these days, it’s a completely different ballgame to pay for two type 1s. We’re talking tens of thousands of dollars. Geez, makes an incredibly tough medical condition almost pale in comparison.

Pity Me Do Not

I like being understood but please don’t pity me. I’m so glad to have a wonderful family and to know how to keep my daughter and I well-managed. This hard work leads to focus, dignity, and gratitude. And in a blink of an eye she’ll grow up and I’ll only be managing my diabetes, once again. Though If I could magically manage both forever, so she wouldn’t have to, darn it, I would lol.

Due to writing this post, I can see what we need. To adopt a strict write-it-all-down habit where our every detail is responsibly tracked. Forcing out my own stubbornness (I hate logging!) won’t be easy but as is evident from all I’ve shared: necessary, it is!

(Sorry, again.)

How to Do Easter With Diabetes in Your House

Too many people seem to go overboard on Easter candy, in my opinion, and as a result, their kids do, too. The effects of sugar are such that if your child has any major stress happening, they might be tempted to sneak candy in when you’re not looking and this can wreak havoc on blood sugars.

Trying to dose for and cover candy doesn’t usually lead to any consistent positive results, either. Unless you’re ok with a 160 mg/dl and in that case, therein lies our fundamental disagreement.

Either way, havoc-wreaking on blood sugars is a very big deal and is to be avoided for your child’s immediate and long-term wellbeing. It’s not “ok” if it’s often happening because we’re letting it by doing things that make success highly unlikely, you know? Like, if it usually doesn’t go well, why keep doing it?

Here are some ideas on how to celebrate Easter if you do (or don’t) have diabetes in the house:

  • Make a special roast or something that you don’t eat every day.
  • If you’re a Christian, here’s a reminder that you obviously should know where to put your focus and this can help you avoid too much emphasis on all the other Easter activities.
  • Bake a low carb treat to have after dinner. This splurge isn’t going to mess up blood sugars and there isn’t going to be a bucket of more of it tempting you or your child for the next few weeks.
  • Plan a fun activity. It takes creativity, especially if you have kids of different ages (though they all have different personalities). Talk to your kids and find something the whole family can enjoy.
  • Start a new tradition. This also summons creativity but it’s worth it. Kids are ok leaving behind something like typical Easter egg hunting with candy if there’s a worthy replacement. Some people stuff eggs with coins, others do erasers, stickers, and other small toys.
  • Put on music.
  • Bring a festive attitude–it’s infectious to your child and other family members.

Here’s what I’m considering (my kids are 9):

I am thinking about filling eggs to put around the house with numbered instructions for a treasure hunt. The kids would have to find all the eggs, put the instructions in order, and then answer riddles and questions for clues to the treasure. I don’t know what the treasure is, yet, but I think that it won’t be as fun as the treasure hunt itself, especially if it involves me getting up early to hide more clues around town. We did that once for my husband, Alex and the kids thought it was the greatest thing we all ever did. It takes effort but you gotta admit, it sounds fun, right!?

You can even plan for the treasure to end up with your church service. I’m not religious but for those who are, that sounds like an excellent idea to me! Unless it’s really early in the morning, then you’d have to get more creative, I guess, like starting the hunt on Saturday and ending on Sunday. Or the treasure could be a small gift that’s waiting at home. This works for all ages because you can make simple or hard questions and riddles and keep the locations as close to home as you want (living room or backyard is totally sufficient for very little ones).

Your kids will enjoy all this quality living that focuses on relationships, things of special meaning, and enjoying that which nurtures us and they won’t need the powerful effects of sugar to soothe or stimulate them. Yes, it’s hard with everyone doing loads of candy and chocolate but you can do different and maybe others will join you over time in tweaking the way we celebrate Easter and other food and kid-centric holidays.

We have to lead the way if we don’t like “how things are done” instead of just complaining about it all or bemoaning the consequences.

Children With Diabetes Deserve Insulin Concentration to Meet Their Needs

Young children with type 1 diabetes face a serious conundrum and that is that the available insulin is often too concentrated for their needs.

As a result, endocrinologists wanting to avoid terrible lows (and subsequent lawsuits) in these little ones order parents to feed a certain number of grams of carbohydrate per meal or they convince parents to put their child on an insulin pump, which can dole out smaller increments of insulin to meet their requirements.

However, the high number of carbs many type 1 kids get these days is a dangerous thing for these children because it crowds out essential protein and fat and can lead to weight gain and directly paves the way to roller-coaster style blood glucose management that I promise you, is worse for the child than the parent–no matter how much work and worry is involved on their part.

In the case of an insulin pump, not everyone wants this technology which comes with concerns about tubing issues and scar tissue development and also, not every family can afford one.

Why isn’t insulin made at different concentrations? I mean, it is, but mostly to meet the needs of the type 2 diabetes population which generally has very high insulin requirements. I’ve talked with many type 2s who use in one day, the amount of insulin I use in a week. This isn’t a judgment on them, it’s me pointing out that adults are getting their needs met in this regard and children are being left behind because why? Is it that they can’t advocate for themselves and their parents are being misled by pediatric endocrinologists who don’t know better? Pretty much, I think. One may argue that they grow up quick and then they don’t need such small insulin quantities but childhood health is essential to the rest of one’s life and so optimizing their care while they’re young is morally imperative.

There is a solution for those who want to give their child a smaller amount of carbohydrate and who don’t or can’t use an insulin pump. Diluted insulin. Special diluent fluid is provided free upon request from insulin makers and shipped to your nearby pharmacy. You can do it yourself or have a healthcare provider do it (if you can convince them to). The diluted insulin means you can dose to correct and cover for your child without the elevated risk of sending them low or needing so many extra snacks. This offers the potential to lower their carbohydrate intake, leaving sufficient appetite for what drives growth in a child–protein.

Regarding growth, look up the science, there is nothing indicating your child requires a lot of carbohydrates to grow. I think this is oft repeated mostly due to the above phenomena or lack of time and willingness on the part of physicians to do the proper research as well as their overreliance on what they’re told by other physicians and by governing associations. My daughter, on a very low carb diet, just shot up over 2 inches in 4 months. Before that, she was on a moderately low carb diet for a long time and her height is over the 90th percentile. Her bones and musculature are impressive. Her hair is thick and long, her nails are strong.

Aside from adequate nutrition, kids also need something else to grow to their full potential and that’s normal or near normal blood sugars, which only low carbohydrate diets achieve and which diluted insulin in children enables.

Diluted insulin could be a service pediatric endocrinologists provide to parents of young children with type 1 diabetes if we demanded it. I admit it’s intimidating to do one’s self. First, we have to educate ourselves and then them. Health care professionals feel really bad for us because they know what type 1 diabetes means in the long run for our children and they know the demanding lifestyle we parents lead (because we advocate well for our own suffering–lack of sleep, anyone?) but they’re not being very brave or ethical by ignoring what is going on with kids these days. Too many aren’t thriving!

Not only do most type 1 children have poor blood sugar management, but many are also gaining excess weight. This doesn’t bode well for their future and it’s not fair that adults have appropriate insulin and children don’t. As parents, we have to fight for our kids. Maybe I’m completely wrong. Fine. Maybe you should find out if any of this is true and if so, I implore you to think and discuss the topic with others. I was one of those kids with high blood sugar and weight gain after diagnosis and it made me extremely depressed and unmotivated, totally slowing down the trajectory of my life which has only got back on the rails by a bunch of miracles, sweat, and tears.

I’ve had enough of this poor treatment of children with diabetes and will not stand for it when it comes to my dear daughter. Children deserve medicine that is dosed for their size. They deserve myths to be expelled by our careful investigation and attention to the matter. And they deserve normal blood sugars.

Teaching My Kid How to Recognize Low Blood Sugar Symptoms

If a minute passes while I can’t locate my type 1 daughter, I kind of freak out. She doesn’t know what a real low blood sugar feels like and that makes me nervous. In the few months since she’s been diagnosed, her lowest blood sugar has been 58 mg/dl and at the time I tried to get her to describe how she was feeling but she said she felt perfectly fine.
She doesn’t like me panicking, and I don’t either, but lows are serious and one can’t ignore that. It’s only been four months so I think as we get into more activities this Spring and Summer, we’ll have more opportunities to learn how to cope.
Once she does get a reading in the low 50s or below I hope to get her to pay attention to the symptoms so she can start recognizing lows the way I do.

About My Typical Low Blood Sugar Episodes

I have about one low blood sugar a day. These are usually not below 60 though and they’re very slow moving so they’re very rarely a bother. (Slow moving because I follow a low-carb diet which removes almost all threat of fast-moving, scary lows).
However, I think it’s valuable that I can sense them physically because it helps keep me safe and I want that for her, too.
Here’s what my low blood sugars feel like:
As I slowly drop (fast drops feel different), I’ll first start to feel better–like super healthy, good energy, and this is when my blood sugar is in the 70s. I don’t know why but I feel like superwoman in the 70s. Then I’ll start feeling a bit weak and hungry and feel a sense of urgency thanks to an elevated heart rate from an adrenaline surge–that’s when I’ve typically hit the mid-to-low 60s. If it continues to the 50s, every symptom will increase in severity and I might start trembling. Since I was a kid I’ve grabbed a piece of paper with my thumb and forefinger to check for trembling–makes it clearer. I may now also get a numb tongue, which is weird. The 40s feel awful, with tightness in the chest and impaired cognitive abilities. The 20s and 30s are rare but I have experienced them all while conscious. They feel like I’m disassociated from my body, slightly drunk, and heading towards the impending emergency shutdown of the body–on the way to unconsciousness to try and conserve energy for necessary organ function and to preserve life as long as possible (my drama-filled guess anyway). 
I tell my daughter what my symptoms are but have let her know that hers could be different.

Confirm With Meter or CGM to Be Sure

I’m teaching my daughter that while recognizing the symptoms is useful, checking blood sugar is still important because symptoms can overlap. For example, being nervous or even very excited produces a rise in certain hormones and the symptoms of jitteriness, fast heart rate, sweating, weakness, and anxiety can all feel very much like low blood sugar.
Sometimes a high can be confused for a low, too. So, it’s just best to confirm.
Not to mention, you can’t figure out if you’re on point with your observations unless you confirm with a meter. But, it’s helpful to first feel symptoms, take a second to describe how you feel to yourself, and then check to see if you’re close.
Over the years, I have become pretty good at guessing my blood sugar within 10 points. But sometimes I’m way off and so obviously, it’s still necessary to not solely rely on feeling.
This is what I’m teaching her. I am enjoying the fact that she hasn’t had a low that makes her feel awful, yet, but it’s only a matter of time before she does and when that happens, I want her to remember what it feels like so she can recognize it the next time around.

Why My Child Eats Low Carb for Her Diabetes

In a post for Diabetes Daily, I wrote about the 5 main reasons why I feed my child with diabetes a low-carb diet. My duty is to deliver her safely into adulthood and ideally with perfect health, so that’s what I’m going for. And yes…her mental and emotional health is one of the priorities. Click below to go to DD and check out the article.

Share with a parent of a child with diabetes you think may be interested. As a former child with diabetes, I wish someone had shared something like this with my parents.

https://www.diabetesdaily.com/blog/5-reasons-why-my-child-with-diabetes-eats-low-carb-608466/

The Diabetes Post I Never Wanted to Write

I knew quite a bit about type 1 diabetes before I diagnosed myself with it at age 11. My sister was diagnosed earlier the same year and I read up on it at the library in order to be useful to the family.

I still remember sitting in science class in 1994 when it hit me. I knew I had type 1 diabetes.

Days ago I got out the diary I wrote in between the ages of nine and 14. I read my early entries to my two nine-year-olds. They thought a day in February was hysterical which just said: “I’m SO bored!” I read to myself some of my age 10 entries, leading up to my diagnosis. Boy, was I moody…I couldn’t help but get a feeling of deja vu later that day when my daughter said something similar to what I had written on December 8th, 1995: “I just don’t know…” I wrote that so I know the feeling behind it and the way my daughter said it when I asked her if she was ok actually gave me the creeps. She sounded dazed and confused. I felt panic because it seemed that if I didn’t know what was wrong, and she didn’t know, then how could I help? She is an articulate child and generally knows herself so this kind of response was disturbing and abnormal.

Then on a typical Wednesday, my son comes up to me and says he is nervous because his vision is blurry. I stay calm and tell him that I’m going to check his blood sugar just to rule that one thing out. Type 1 diabetes in my children is a constant worry of mine.

I have two siblings with type 1 and an uncle with it, too. We definitely carry the genetic predisposition for it.

Alex is home from work now and he encourages our son to let me prick his finger.

He’s very nervous but he lets me do it. He’s 108. My stomach falls. I wish it was lower. That number is just good enough and just bad enough that I sit there dumbfounded. He looks worried and says, “that’s a little too high, isn’t it?” I have never lied to my kids so I tell him, “I think so…but it’s not too bad, we’re just going to keep an eye on your blood sugar going forward, ok? You don’t have to worry about it right now.” (His vision was back to normal after we checked him, turns out he had been pressing on his eyes, you know, things kids do).

Then suddenly, I decided I must check my daughter’s blood sugar. She is afraid of having her finger pricked so she runs away to her room. Alex has a chat with her and I am able to do it, though it’s no easy task. She has generally always been a very tough patient and I’m distracted by trying to keep her calm and keep her from pulling her finger away until the meter quickly counts down and beeps and the strangest number shows up on the screen: 245 mg/dL making my jaw fall open.

I’m speechless. I show Alex the meter and he looks just like me. He mouths the word “no…”. I tell our daughter there was a mistake and that I need to check her again. She’s upset by this and asks why. At this moment our son is looking at the result on the meter and says, “Was that her number? She’s really high…oh no, mom, I’m scared” And he starts to cry. She is on the other side of the room avoiding another finger prick. We check her again and confirm the high. She walks away to the couch and is upset about her bleeding finger and the slight throbbing. I accidentally pricked her too hard due to being unable to stop my shaking.

I check Alex’s blood sugar, for some strange reason. I don’t know what I was hoping for, the possibility of a screwy meter? He’s 100 mg/dL. I feel a rush of despair as I realize that our kids, who should have lower blood sugar than their dad, both have higher blood sugar than him.

Immediately I start thinking about research that shows what the chances are for a fraternal twin to get type 1 if one has it. I think the chance was about 22%, which is crazy high. For identical twins, I think it’s 50%.

I sit crying quietly with Alex at the dinner table for a few minutes. Then, while he’s holding our daughter in his arms, I ask him, “should we tell her?” Our daughter still doesn’t know what’s going on while the three of us are all mourning for her. Alex nods to my question. So I tell her that her blood sugar was high. She immediately knows she has type 1 as she covers her face to cry. She’s lived with it all her life by being my kid. Since she’s always been homeschooled, we’ve spent all our days together and she and her brother have not only seen all that I do to manage but have also heard me talk about it often. She even knows the risks and complications that can come with type 1.

I inform her with strong conviction that I have learned how to manage type 1 diabetes well and that we would take care of her. This is true. I have been a weird type 1 diabetic. I’ve talked and written about it much more than most type 1s would ever want to. Recently, I had told Alex that I still didn’t know why I have been obsessively compelled to learn so much about diabetes and to constantly read about it.

Sometimes you work hard and spend all your free time on something and you don’t understand why you’re driven to do it, you only know you must. I don’t enjoy learning about diabetes or talking about it or writing about it all the time. But now I know what I was training for, apparently.

A few years ago I imagined what I would feel if one of my children were diagnosed with this and I vividly saw myself on the floor, a puddle that no one could pull up and console–a pitiful shell of a person that couldn’t help anyone. I truly imagined that I would be so emotionally injured that I would die. But since my kids need me, I decided then that I had to toughen up. Because I can’t die on them.

Over the last few years, I have changed dramatically. My mindset is different now and many of my beliefs, too. I studied philosophy to learn how to determine was it real, true, and good and I started looking at everything more objectively. I was able to stop being mad at certain things and start being mad at things that deserved my wrath. I began to hold myself accountable and responsible for my life and my emotions. I stopped being fragile, honestly. I have been transmitting all this to my kids, teaching them how to think critically, be resilient, be righteous, and brave.

So I realized that night, standing in the kitchen with Alex’s arms around me, that I wasn’t a puddle on the floor. I was full of adrenaline of course, but I was standing tall and determined. If type 1 diabetes were a person, I’d be glaring at it, calculating just how I was going to beat it down.

Alex and I had a meeting with the kids the same evening about how we were all going to eat from now on. I eat a very low carb diet to manage my diabetes and now my entire family is going to do it. They are already used to a low carb diet but the step down to “very low carb” is not easy. I was surprised by how willing our son was to do this for his sister.

My daughter hasn’t cried again since…even after seeing me break down after the official diagnosis at the doctor’s office days later. She just took my hand and looked me in the eye and said firmly, “Everything is going to be alright.” I told her I was just so sorry and that I never wanted her to have what I have. She said, “I know, mom, it’s ok. Let’s go home.”

When did she grow up? Was it the day she was diagnosed with type 1 diabetes?

We caught the type 1 early so she doesn’t need insulin, yet. Her diet is keeping her mostly in the 70s and 80s. I check her during the day and in the middle of the night. She’s like a new kid when it comes to the finger pricking. She easily gives me her pinky, her favorite finger–mine, too coincidentally, turns her head away and covers her eyes with her free hand.

I’m still bursting into spontaneous tears at times but I don’t feel weak and hopeless. I am devastated. Yet, my love for my kids fuels me. I will take care of my daughter’s diabetes and teach her how to have excellent blood sugar management. I will keep an eye on my son’s blood sugars. I will make sure my husband knows what he needs to know to feel confident when I’m not around.

If there’s anything I’ve learned thanks to diabetes is that life is hard but much harder if you don’t learn to defer gratification and be stoic and use restraint and wisdom and curiosity. It feels good to avoid sweets in order to see better blood sugars. It feels good to check blood sugar in the middle of the night to stay safe. Everything you do that is wise but difficult will boost your self-confidence and self-respect and make you the person you always wanted to be: healthy as is possible, brave, and in some very meaningful ways–triumphant.

I strive to be humble, patient, empathetic, calm, and respectful with my daughter throughout this journey. I know that if I do these things, she’ll likely treat herself that way the rest of her life and she only deserves good things–including normal blood sugar.

Calling Things by Their Proper Name and Why High Blood Sugars Always Make You Feel Bad

Dr. Stephen Ponder, an endocrinologist living with type 1 diabetes, has been posting thought-provoking questions on Facebook. One of the latest questions was: “How often do you say “good” or “bad” when talking about blood sugar (or an A1C)? If not, then how do you describe them? Should kids use “good” and “bad” when talking about their sugar levels?”

I thought I’d answer in the form of a blog post since this sparked a whole long train of thought for me.

Confucious supposedly said, “The beginning of wisdom is to call things by their proper name.” If something causes you harm–for example, as high blood sugar does, then I hesitate NOT to call it a “bad” blood sugar because it simply is, whether we acknowledge it or not. I believe it would be bad for my health if I didn’t identify, accept, and name the truth on a regular basis. It’s hard to swallow but my reality needs to be very much imposed on me if I am to act in my best interest.

Houston: We Have a Problem

People email me all the time asking what the secret is to my pretty good diabetes management and how I have the discipline for it. Honestly, any good I derive from my actions begins with calling things by their proper name. That means that I admit that eating what I want and covering it with insulin doesn’t work well enough (for me). I openly say that low carb for type 1 diabetes is the only way I know of, to get close to achieving normal blood sugar levels, a healthy weight, and safety from severe hypoglycemia. And I say that not having normal blood sugar levels is physiologically harmful because we know it is. If it weren’t, no one would be diagnosed with pre-diabetes with a 6% A1c level but, they are every minute of every day. It is on that basis that I call a 6.5% harmful and deem it not good enough for me.

If I don’t acknowledge that something is “bad” or “not good” then I don’t follow with the appropriate response or actions which have to do with changing those blood sugars or anything else. We need to apply judgment in our daily lives. It’s necessary. I have to be able to admit to myself when I’ve mistreated a loved one or I’ll certainly continue to do it. I have to be able to admit when I’m overeating, or I’ll keep gaining weight. And I have to be able to say “no, that’s not good for me” or I will suffer various potentially unlimited consequences. What is it they say to those with an addiction? “You must first admit there is a problem.”

High Blood Sugars Make You Feel Bad Even if You’re Told Not to Feel Bad

I understand parents of children with diabetes don’t want to use “good” and “bad” in relation to blood sugars or diabetes management in part because the child didn’t have anything to do with getting such a brutal condition and we don’t want them to feel bad about themselves due to diabetes. And I do support the effort many parents put into saying things like, “It’s not that you did anything bad, it’s that this isn’t working and we need to figure out what will work better.” There is still an acknowledgment that something isn’t working and the troubleshooting can begin and the child can feel better, physically, mentally, and emotionally.

I’ve recently put quite a bit of thought into why I struggle to do what I needed to as a kid with diabetes. There are several reasons but I think the main one is that doing what my parents and I were told to do didn’t ensure my success, at all, and made me feel sick and anxious anyhow and thus I acted out of hopelessness, by lying about my blood sugars, not always doing my blood sugar testing, and sneaking sugary foods to self-medicate my feelings of despair. I knew what my high blood sugars meant for my future, and in the immediate moment, my self-esteem took a hit. High blood sugars (especially really high blood sugars) make you extremely sluggish, make your saliva thick and foamy, your thinking slow, and make you not look and feel generally healthy (albeit subtly, at first).

Let’s face it, anything that is a detriment to health is a detriment to outwardly attractiveness, if not now, then later. I remember thinking as a teen that I was totally ok with my ears sticking out–there was nothing I could do, and they functioned properly, but I wasn’t ok with the weight gain I was experiencing from the way my diabetes was being managed. I wasn’t ok with becoming less attractive due to diabetes nor slower as I played sports which requires you to compete using your energy and speed. I couldn’t prove to myself or anyone else how just how good I could be as I couldn’t fully apply myself to anything. Within my capabilities, I tried SO hard, though. Not getting results for your efforts because of diabetes makes a person crazy. And successful diabetes management relies on the most effective efforts, not the most industrious ones so I lost out.

For those without diabetes, think of how you feel about yourself when you’ve been injured or come down with a bad cold–you’re knocked down a few pegs, right? Even if people are kind to you and don’t make you feel bad about any of it. Admit it, you feel less attractive, less productive, and you may feel motivated to do whatever it takes to get yourself back to feeling good, even doing things that you were not willing to do before that experience.

I believe many people with diabetes, including children, are in an impossibly precarious situation when their blood sugar management is less than ideal. This is particularly true once they learn what elevated blood sugars can do to them over time or once the negative effects stack up over the years. No, it’s not fair, or whatever, but all I know is my “good” diabetes management began when I admitted to myself that my diabetes management was “bad” and that if I were willing to make some sacrifices in the name of tight blood sugar management, I may have a ticket to health and happiness. It’s been more than worth it, which is why I keep annoyingly banging this tired drum.

Is it Possible to Do Better?

I am partial to diabetes management for adults and children which makes it easier for them to be successful with their diabetes because the alternative leads to misery. No matter how much you tell a person they are “good,” if their blood sugar levels are often high, they are going to be feeling poorly much of the time, and that is going to make them feel “bad,” regardless. It’s very hard for us to separate how we feel, physically, from how we feel, mentally. One follows the other. Feeling unhealthy does not lend itself to feeling good and it never will.

Do some people who don’t feel healthy manage to feel good and happy? Yes, but this is a feat not accomplished by most, and while children amaze us with their resilience alas, they do grow up, and many will suffer the weight of high blood sugars and blood sugar variability and fear of hypoglycemia as evidenced by personal social media accounts and all the studies pointing out rates of anxiety and depression in adults with type 1 diabetes.

This is why I encourage the attempt at a low carb diet for anyone with type 1 diabetes. Thanks to those who do very low carb diets, we’ve learned that it is possible to do better with glycemic control. Did you know that for a long time no one did better than a 4-minute mile and experts said it was impossible and once Sir Roger Bannister did, many others followed suit soon after? That’s because we can only accomplish what we believe is possible. I’m telling you that I’m not special, I don’t have more discipline than you, and that it is possible to achieve very tight and safe, blood sugar control.

The repercussions of this are incredible. In my experience, it leads to better moods, better relationships, improved ability to work, less fear of highs and lows, less anxiety, less depression, better sleep, and on and on. The positive effects are hard to quantify but they are exponential and eventually make going back to another way of managing diabetes something I won’t consider.

You can’t easily feel good about yourself if you don’t feel good physically and you likely can’t feel your best physically if you don’t have blood sugars as close to normal as possible. For more: check out the Sir Roger Bannister of the type 1 diabetes world: Dr. Richard K. Bernstein.

To conclude, I don’t worry about good/bad and any similar terminology when I think to myself, I worry mostly about my outcomes and my actual experience. It’s surprising how happy I can be while honestly telling myself that something is “bad”. That’s because I then put my energy into finding what makes it “good” and focus on that, instead. What you focus on matters and makes all the difference.

(If you manage your blood sugars well without low carb and you’re happy and healthy, I’m not directing this to you, at all.)

What my Son Taught me about Respecting People’s Fear of Needles

I grew up with type 1 diabetes and so it became crucial that I get comfortable with checking my blood sugar and giving myself injections in front of other people.  I would often be afraid of their reaction.  Would they be disgusted?  Worried?  Alarmed?  I have always used some discretion when handling these acts in public but I’ve also been vocal about how these acts affect me and not anyone else so I really don’t want to hear anyone complaining about it.  After all I’m the one enduring the pain, right?  Well, I may have been wrong.

My children are six now, but I noticed that when they were about 4, my son would stare at me when I gave my insulin shots.  He would watch the needle go in and out.  He’d even observe as I put the orange cap back on the syringe and zipped it back up in its case.  I thought to myself, “well, he sure seems interested” and I’d answer any questions he had about what I was doing.

As he got older he would ask questions like, “mommy, does it hurt when you do that?”  And I’d answer truthfully, “yes, sometimes it does, but usually it doesn’t”.  He would then say something like, “I sure am glad I don’t have diabetes.” In the past year, he has winced every time I prick my finger for a blood sugar check or given an insulin shot.  I also noticed that sometimes he would appear to physically shake off the image he just saw the way a parent might when envisioning a worst case scenario involving their precious child.

I have been quite accustomed to doing all these diabetes things in the same way someone else might pull their hair up into a ponytail or role up a shirt sleeve.  In other words, I have grown into an adult that recognized I needed to be comfortable checking my blood sugar and giving insulin anywhere and in front of anyone for my wellbeing and so I do these things mindlessly and without the crippling worry I felt as a child or teenager.  In doing so I’ve learned that most people have a lot of empathy and compassion.  They are cautious if they don’t know me and if we are say, shoulder to shoulder on a plane ride, but still rather polite.  I always imagined that I’d have children who wouldn’t even blink at my pricking my finger because I figured they’d be used to it.

My daughter has been an interesting comparison.  She doesn’t wince or tremble or look like she is in pain for me at all.  Instead, she looks away and continues what she is doing, staying just as happy-go-lucky as always.  Recently, after injecting, my son said,  “Mommy, it hurts me so much every time I see you do that.”  I quickly rushed to his side and said, “But, I’m ok sweetie, it only hurts a little, I’m still happy and smiling and everything is ok.”  Then he explained how he knows it does hurt sometimes, how he has seen the little bruises that sometimes arise, and how he hates that something painful is what keeps me alive.  Such empathy!  Then I was stunned when he said, “Would you please turn around when you are giving your shot so I don’t have to see?”

And I suddenly understood something I hadn’t before.  Some people watch us inject or prick our finger and genuinely feel a tingle through their body thanks to a release of cortisol brought on by the stress of the great load of empathy they feel for us.  Most of these people know we have to do what we do but some people are very sensitive, so much they might appreciate us having more discretion around them because they will feel our pain to some extent.

You might think of someone you don’t particularly like and not really care too much about their reaction.  I get it, but we all desire compassion from others and the only way to really earn that is through reciprocal empathy.  I care about you and you care about me.  My son doesn’t get that stress response anymore because even in the comfort of my own home I turn around or go to a different room.  When we are in close quarters I let him know what I have to do and he appreciates the warning so he can turn away.  Then I say I’m done and both my kids look at me and smile.

I now extend this awareness and courtesy to others wherever I go.  I bet there are less people out there with a fear of needles than those who are quite simply sensitive to another’s suffering.  And who would want to make this sweet little face upset?Christmas-Day-2011-134.jpg

Just to clarify, we people with diabetes should absolutely do what we need to do, when and where we need to do it. However, life should be played by ear and there are easy little ways to spread compassion as we go.  I’m not boldly defiant about my diabetes management in public–i’m calmly adamant that it’s the right thing to do.  When I soften myself up and show empathy towards others, they show it right back. It’s a win-win, what I’m advocating for.