Category Archives: headline

Don’t Let Insulin Prices Kill You

Some people die every day because they don’t have access to something they need. Especially if you travel outside of the US. If you investigate, there is often a string of reasons contributing to their lack of access to something they need. So while none of us expects a fellow human to be perfect, survival and its first world, distant cousin we call “thriving” often demands a solid succession of wise decisions. We should be encouraging each other to make good decisions and I include the medical community when I say this.

The Diabetes Online Community often says that people die just because of a lack of access to insulin because of the prices of insulin. It’s a bit more complicated. This story has been oversimplified. Obviously, the prices of insulin are a huge contributing factor, but since prevention of more people ending up this way is of key importance, I think that talking about the other reasons which may have played a role is crucial. For example, these people who died because they couldn’t afford insulin, did they not have family or friends or a church community they could lean on? Did they have the latest smartphone or a nice car? Did they get in over their heads financially? Did they struggle to keep constant employment for some reason? Was it due to poorly managed blood sugars? Were those due to choosing to eat foods that make it really hard to manage blood sugars?

In other words, did their life choices help make them this vulnerable?

Some in the DOC will ask how these cases happen and often, community members shoot back saying that it does no good to question and that suggesting that their personal decisions played a role is just WRONG. Well, I beg to differ.

I think it could absolutely help someone to question this. Someone who could be next might be reading and may make a determined push in their life to make themselves less vulnerable. We should never minimize the power of wise personal decisions. They often make all the difference.

Of course, these stories are awfully tragic but I do question how each might have been preventable, too. Why? Because my daughter and I have type 1 and that makes us pretty vulnerable as a family unit with crappy health insurance and one income. So to best protect ourselves, my family has to think through possible safety nets and situations very carefully. We can’t afford certain things nor to engage in certain behavior or take certain risks. People tell me I should take a vacation because there is a bit of money in the bank. No. That money exists as a cushion to the realities of life–one with two type 1s in it.

Life is rife with consequences for everyone, especially those most vulnerable. One of the saddest things to me about type 1 diabetes is how vulnerable it can potentially make a person. No it’s not “fair” but life isn’t fair so what I would recommend any type 1 to do is strive to make careful decisions and to try to find ways to insulate themselves from further vulnerability, and simply do what is in their best interests, even if that means going without something else like a smartphone or a vacation or a nice car or cable TV or new clothes, etc. There are exceptions to everything but surely most of us can minimize the chances that we will end up like these sad cases?

Obviously, insulin prices are horrible (believe me I know, I pay twice over). However, each of us is probably responsible and smart enough to figure out how to survive if we focus and carefully prioritize while we work for improved affordability.

Here’s my plan against death and destruction from type 1 due to a lack of insulin under normal circumstances (not talking about a zombie apocalypse with a lack of electricity or a shortage of supplies or something–Lord help us all in that scenario):

My family already eats a very low carb diet which works best with R insulin for meals. On top of this my daughter and I also use a basal insulin and fast-acting for corrections. What if I can’t afford the basal and fast-acting? The plan is to use R and NPH for $50 a month to survive and be more disciplined than ever. It’s better than death and I’m also positive we can do it to achieve much better glucose control than most who have access to all the latest insulins plus a CGM and a pump. How to afford very low carb food? I would pretty much live off of tuna and sardine cans, I’m sure. It would suffice for a difficult period of time.

It also helps to keep friend and family ties, if possible. The more people to help you in a pinch, the better. Staying healthy usually saves money, so doing what one can now, today, to take great care of health and type 1 will pay off big time later on.

I’ll do all I can to prevent anything hurting me or my family. I suggest you do what you need to do to ensure your well-being, too. Don’t let excuses and a lack of priorities get in the way of your survival. After all, surviving and working to improve things is always the best way to honor those who didn’t make it.

Diabetes, the Great Provocateur Can Make You Better

One of the reasons I look at a diabetes diagnosis as tragic is that it’s going to immediately prod at and expose all your weaknesses. You’ll suffer more than another person who lacks as much discipline as you, who also doesn’t have supportive family or friends, and you’ll particularly suffer if you are short on agency (and many of us raised in the last 30 years are, in my opinion). This is precisely the same reason diabetes can make you better at all you do because by knowing your weaknesses and having very clear motivations, you can actually improve yourself considerably.

A diabetes diagnosis is a great opportunity which is hoisted upon you forcefully and not meeting it head-on spells out a certain kind of doom. It’s undoubtedly harsh.

If you’re not organized, your diabetes management skills will constantly be undermined by your lack of preparedness and routine structure involving your supplies, medications, and activities.

If you don’t have peaceful relationships, you’ll be distracted from a big priority you have–your immediate and longterm wellbeing via blood sugar management.

If you lack financial resources, you’re going to be extremely challenged by a diabetes diagnosis and will have even greater financial strain. You’ll feel resentful towards your diagnosis because instead of affording x you now have to use that money for diabetes a-z.

If you lack agency, you will struggle to take responsibility for your life and may feel like a victim of diabetes and in many cases avoid doing all within your power to stay very healthy and manage diabetes successfully.

If you lack supportive people in your life, you’re going to feel lonelier than ever by living with a condition that makes you do unnatural things like give injections, draw blood with a lancing device, or save your own life with a substance you otherwise try to avoid or limit and/or carefully cover with insulin.

If you can’t defer gratification and have some self-discipline, your blood sugars are most likely going to be all over the place. Then you’ll feel bad, suffer at work and in your relationships, acquire anxiety and depression, and start a spiraling descent. Others will have the same character flaws as you but won’t be plummeting and you’ll be very tempted to blame everything on your diabetes.

If you are already depressed or anxious, a diabetes diagnosis is going to put a bucket of salt on your wound and make it that much harder to get out of bed in the morning.

I could go on but you understand. That’s because none of us is perfect and we all have something we’d like to improve about ourselves. And we all know how that something hurts our diabetes management. If we have too many of these challenges, then diabetes becomes unbearable to deal with. Your challenges were steep before? Now try surmounting them with this severe agitator compounding each and every struggle.

No, it’s not fair.

But it’s the reality and you’ve not got time to dwell on how unfair it is. We get nowhere unless we face reality and so I think that if you can manage to embrace a diabetes diagnosis and look at it as the beginning arc of your hero’s journey, you stand a very good chance of using diabetes as a trigger to finally tend to some bad habits or things you’ve been neglecting about yourself. Rise up to meet the new reality. Is it time to actually lose the weight? Use diabetes as one of your motivators. Have you lacked self-responsibility and maturity? Now you’re going to grow up. Diabetes can serve as a catalyst. It’s so bad that you’re going to act and propel yourself forward and up, up, up.

Even if you were diagnosed 20 years ago, you can still decide to one day make diabetes be ruled by you instead of the other way around. You’re going to use discipline, you’re not going to make any more excuses, you’re going to be in control of your actions and thoughts, you’re going to work hard, you’re going to be determined, you’re going to dig deep and show yourself what you’re made of. Diabetes may provoke your weaknesses, but that means you get the chance to face and conquer them. You stand to lose if you don’t but don’t focus on that–you stand to gain so much! Jot down exposed weaknesses and tackle them one by one.

One day you’ll look back and see that what you can do actually surpasses the actions of those who haven’t been challenged by one of the most silently gruesome and exhausting chronic illnesses out there.

To be successful with this condition, those weaknesses must be addressed and dealt with. You’ve been chosen to stop at a fork in the road and either fall into some guaranteed level of misery or live really healthy and be amazing in terms of what you can get yourself to accomplish. Not a lot of grey area may exist for you or me but great things lie ahead if we let type 1 diabetes change us for the better.

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.)

2 Reasons Why I Split My Basal Insulin Dose

2 Reasons Why I Split My Basal Insulin Dose

More Even Coverage

The first reason is obvious and common–it helps provide better “coverage”. However, I take Tresiba and most providers do not encourage splitting the dose of that insulin due to its approximate 42-hour action profile. When I took one dose, I had an extreme drop in blood sugar at one point of the day and didn’t like that.

So, I was splitting it like this at first: 6-8 units in the morning and 3-5 at night. I check at random times, often at night and things seemed to be working very well. Then I discovered through trial use of two different CGM systems that I was dropping in the early morning hours while I was sleeping. Sometimes I would stay around 30 for an hour before waking up. Other times the graph simply indicated that I dropped to the 30s or 40s and then rose on my own (thanks lifesaving liver!) to about 60 or 70 by the time I got up.

Is this why I’ve been waking up really tired and groggy and with a headache for such a long time? Sheesh. Maybe I should just be grateful I’m alive…

Anyway, after that, I tried flipping the dose around giving the larger one at night and the smaller in the morning. This makes the drop happen around dinner for me–and it’s also a more moderate drop, I guess I need a bit more insulin in the afternoon as opposed to the middle of the night. It’s certainly safer than a blood sugar dip while I’m asleep and not plugged up to a CGM of any kind.

Not surprisingly, I’m much more chipper in the morning since I figured this out.

I share this extra bit in case anyone out there splits their dose and isn’t aware of nighttime lows–beware and check at different times during the night to make sure there are no consistent lows happening without your knowledge!

For Safety

As for the second reason I split my dose, it has to do with safety. Before I took Tresiba I took Lantus and I before I split the dose, I didn’t, and you know what happened to me, twice? I accidentally gave about 20 units of Humalog in place of Lantus. Both of these instances were awful and involved a ridiculous amount of grape juice. I can’t even smell grape juice today without gagging. The fear though, that was the worst part.

After that, when I started splitting Lantus, if I were to ever draw up Humalog to the dose of Lantus, I would be giving half that amount and I’d manage the emergency where I was instead of finding myself being rushed to the I’m-going-to-bankrupt-you-ER.

Tresiba requires less in terms of daily units of insulin for equal strength so if I ever goof up with Humalog again (I don’t plan to) then I will be giving at most, out of habit, about 6-8 units of Humalog or R insulin and I can handle either of those doses with glucose tablets that I always carry on me.

 

Feeling a Disturbance in the Force

“A disturbance in the force” is how I like to approach the topic of feeling lows. I think that for me, it accurately describes subtle symptoms of lows that are not immediately obvious.

For example, most of my lows start out with certain symptoms and then those symptoms evolve with increasing severity. But sometimes symptoms of lows are masked by a number of possible factors including but not limited to:

  • exhaustion
  • major stress
  • excitability
  • nervousness
  • being in a hurry
  • being under the influence

I’ve found over the years that I do a better job than ever before when it comes to sensing low blood sugar. And the way I do it involves asking myself if I sense a disturbance in the force. This means I tune in to my body for a moment. I mindfully scan myself real quick and I check for:

  • increased/uncomfortable heart rate
  • sweating
  • slight hunger
  • sense of urgency (hence the famous lows that occur while cleaning)
  • weak core muscles
  • poor attention and slow thinking

If I’m feeling confused and irritable, I usually pop a glucose tablet in my mouth because for me, those are symptoms of being very low and I don’t mess around when that’s a possibility.

Checking for my heart rate is, for me, the most reliable because as I get lower, my heart races faster. Eventually, it starts to beat out of my chest. However, that’s how I feel when I’m giving a presentation or doing high-intensity exercise so a blood glucose meter is needed to confirm in certain situations.

I treat lows differently based on circumstances. If I’m driving, I don’t check, I get a glucose tablet and pull over, first. If I’m alone with the kids or in another vulnerable situation, I quickly get glucose before fumbling with a meter. What if I only have time to ingest the glucose? I’ve never gone unconscious from a low in the almost 25 years with type 1 but maybe that’s partly due to the precautions I’ve learned to take.

The overwhelming majority of my lows these days are gentle ones in the 60s. For those, I confirm by checking and giving a small measured amount of glucose so that I only bump myself back up to the 80s.

It’s tough being mindful about our bodies at times but trusting ourselves when we have a split second thought about a “sense” we’re getting might be a valuable early warning we can act on to help keep us safe. Getting in the habit of “scanning” our body for symptoms is one I highly recommend.

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.

Is a 6.5% A1c Good Enough for You?

The premise that a 6.5% A1c is great for a type 1 diabetic is based on the widespread belief that we simply cannot expect better results than that and still maintain safety from low blood sugars. The truth is that a 6.5% A1c in a non-type 1 diabetic is medically diagnostic criteria for type 2 diabetes. It is well established that type 2 diabetes is detrimental to one’s health, especially in the long term, though probably also in the short-term, though that is more difficult to quantify due to comorbidities.

It’s possible that a type 1 with a 6.5% A1c is different from a type 2 with a 6.5% A1c because the type 1 might be having more blood sugar variability, which the body doesn’t like. The type 2 in many cases has additional metabolic distress in the form of insulin resistance, obesity, high blood pressure, and fatty liver disease which would also make a difference when comparing their 6.5% A1c to that same A1c in type 1. Therefore, there are factors making this a nuanced issue.

However, if you look at cardiovascular outcomes of people with A1c averaging in the lower normal A1c range and compare them with those whose A1c averages in the upper normal range, you’ll find that the former does much better than the latter. Many people with type 2 diabetes experience complications and most likely their diabetes started after they became adults. So imagine what may happen to the type 1 child who experiences an additional two or more decades of harmful blood sugar by the time they’re 50? If you’re thinking that’s not fair, I agree.

If you have type 1 diabetes and have a healthy weight (which is increasingly less common) and you have low blood sugar variability and you feel good and all other vitals are in optimal normal range and you’re not making visits to the emergency room, then you may be completely content with your management. Or you simply may not be willing to make certain changes for what you may deem a very minor improvement in the quality of your life. Or maybe you were diagnosed much later in life so you have a long and protective history of excellent blood sugar. Or perhaps you aren’t willing or ready to aim higher right now. We all have this freedom to choose what is right for us and I wouldn’t want it any other way.

As for children, ethics would dictate that our choices must reflect much higher standards on their behalf.

For those who want better than diabetic blood sugars and are willing to do what it takes, there is a way to manage diabetes so that you can achieve normal or near-normal blood sugars and see less severe hypoglycemia. I don’t know of another way to do this than to eat a diet that is comprised of very low carb, high protein, and fat to the degree you require. There is more to it than that, though. You may be tired of hearing this but if you read Dr. Bernstein’s Diabetes Solution, you’ll learn what you need to know to get on the road to optimally healthy blood sugar management.

Ultimately, I want you to know that if you want it, it’s possible. Regardless, I wish all diabetics the very best of health.

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.