Category Archives: Diabetes Advocacy

Why There is Nothing Wrong With Sharing Your A1c

Why do some people with diabetes share their A1c? Why do some not share that info? For various reasons, of course. I support people doing what they feel is right to do for themselves. If you don’t want to share your A1c or weight or the square footage of your home, I respect that.

Why do I share my A1c? Because I used to think that normal or near-normal blood sugars were not something I would ever get to enjoy as a type 1 diabetic…until I heard that some people like me had A1c levels in the 4-5% range and I thought, “wait a minute? this is possible? It couldn’t be…how do they do it?”

Their A1c level was like a signal for me. It led me to seek out these people and what they were doing to get that A1c. It led me to figure out what might help me improve my blood sugars. Along the way, I had to learn how to avoid lows and what technology best served me and how insulin works. But, I eventually became one of those people with a “normal A1c” and darned straight I’m going to tell people about it because others once did me a huge favor by telling me!

That said, I don’t care if no one cares about my A1c. What matters to me is why I share. I think it might be helpful to someone and I’m willing to spend time sharing on that hope.

There’s nothing inherently wrong with sharing your A1c because it doesn’t hurt anyone to do so. Some say it does hurt some people’s feelings but so does announcing a pregnancy, engagement, or job raise.

Those who insist on speaking for others need to think twice–are you sure they want you to speak for them? Those whose feelings are hurt who notice that others are doing just fine with the same information may want to look inward and consider that shame or jealousy may need to be addressed. I say that because someone gave me that line and I found that focusing on my personal issues was a life saver. Who cares if someone shares their health data? Not me.

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.)

Why Dr. Bernstein is an American Hero and Why Doctors Should Be Curious About Him

My colleague at Diabetes Daily, Maria Muccioli, Ph.D., wrote an excellent and in-depth coverage of a remarkable study on very low-carb diets for treating type 1 diabetes in children.

The study found that a group of type 1 diabetic children following a very low-carb diet à la Dr. Bernstein style were not only experiencing normal blood glucose levels (this is nearly unheard of in type 1 diabetes) but also growing well (a top concern as macronutrient intake of carbs is widely believed to be essential for growth in children).

The researchers of the study looked at children from a Facebook group called Type1Grit. This group consists of adults with type 1 diabetes and parents of children with type 1 diabetes who all follow Dr. Bernstein’s regimen. This regimen includes very low-carbohydrate intake but so much more–put just any type 1 diabetic on a very low-carb eating plan, and I promise you’ll likely not get the results you are hoping for–though if you pay close attention to blood sugars you may notice some interesting things regarding the statistical range of error after giving smaller amounts of insulin. It’s about more than low-carb eating. Low-carb is essential to the plan but to do well, there are more things to do and understand. One must understand how to use and adjust insulin properly, understand how different physical activity impacts blood sugars, and so on. The Type1Grit group does so well because they utilize Dr. Bernstein’s decades’ long expertise to guide them (which is all in his book) and like any good support group, they help each other stay focused, informed, and motivated.

Some people on social media have voiced strong opinions against the group due to some of their outspoken members. It is my hope that we focus on content over delivery when it comes to important matters. After all, if fellow thinkers had rejected Issac Newton’s findings simply because he was a jerk (and according to the book I’m reading my kids about him he was) wouldn’t that be a shame? Personally, I strive to be gentle with others because I am quite sensitive. However, I also try not to put my feelings above critical thinking, and I think that serves me well. I also hope that the communication of a few doesn’t cause some to dismiss the whole group or worse–a promising idea. That said, I have not personally observed anyone from that group being rude to others, though some have been quite open and blunt with their opinions and I have observed a very strong response to that, in general. I do not consider an opinion shared in a straightforward manner to be rude.

My Personal Story Following Dr. Bernstein’s Advice

I have followed a loose version of Dr. Bernstein’s protocol for about a decade, further lowering carbs and adding in more of his advice gradually over the years (I now follow his advice very closely). His logic struck me like lightning when I read his book, Dr. Bernstein’s Diabetes Solution. In particular, I was deeply moved by a line that said something about how people with type 1 diabetes “deserve normal blood sugars”. Dr. Bernstein’s protocol includes the use of Regular insulin to cover high protein meals versus faster analog insulin such as Humalog or Novolog. In fact, after using a CGM (continuous glucose monitor) for the first time recently, I quickly saw how my Humalog was a bit too quick and potent at mealtime and then a bit too short hours afterward, so I bought Novolin R at Walmart for $24 and have improved my blood sugar levels. This is to stress how following Dr. Bernstein’s protocol is about more than just reducing carbohydrate intake.

Many years ago, I found immense value in attempting just a little bit of Dr. Bernstein’s advice. Small changes like lowering my carbohydrates and understanding how to use my insulin better led my A1c to drop from 8-9% down to 6%. Before this, just covering high amounts of carbohydrates with insulin had mostly succeeded in making me fat, tired, depressed, and anxious (oh and with protein spilling into my urine as an 18-year-old in her “prime” of life). You have to understand how terrible this was for me–I was a bright-eyed kid who was intelligent, hopeful, hardworking, patient, and super determined. In a few short years, diabetes messed with my potential–I didn’t recognize myself anymore. It’s particularly sad to spend years recovering as a young adult when you’re supposed to be at peak performance and potential due to your youth and energy.

Dr. Bernstein, who many dare call a “quack” or “nutjob” saved my life just as he saved his own. My A1c hasn’t touched 6% in many years. I have a wonderful husband. We have twins who are about to turn 9. I’m still trying to reverse some of the consequences of very high blood sugars from my first 10-12 years with diabetes. What if I didn’t have to?

What Actually Does More Harm?

People tell me that eating low-carb will hurt my cognitive abilities. Do they know that studies indicate that typically managed type 1 diabetes may do that, anyway? Type 1 diabetes (with the average management of 8.2% A1c in the U.S.) has been shown to possibly lower intelligence and negatively affect memory and speed. Low-carb in the long-term may hurt my cognitive abilities (I haven’t seen anything to indicate this possibility though) but what if it just takes the place of what high blood sugars would have done to my cognition? And what if low-carb additionally helps protect my cardiovascular health and my kidneys and my eyes–oh and allow me to have healthy children! Do you know how fortunate I am that I turned things around when I did? I have children because of the information that turned my health around just in the nick-of-time. I can’t begin to describe the level of rage I might have had I never had children yet discovered that Dr. Bernstein has been trying to tell the world about his successful method for decades.

Where is Our Curiosity?

If you find Dr. Bernstein followers as angry or overly-passionate, this may help explain why: Unnecessary suffering is a tragedy. We’re in a country whose founders had been curious and open to acknowledging ideas that are worthy, pushing those ideas to the top where they can be put to the test and then accepted as the best ideas because they can create the best outcomes. This is the great thing about Western Civilization. The embracing of objective principles which allow the best ideas to rise because even if they come from someone we can’t stand, we know that ideas, critical thinking, and truth reign over all else and push us towards progress. Dr. Bernstein’s protocol isn’t an expensive training center and it’s not just for the elite of the world. He thrives using a cheap insulin in the same country where people die because they don’t know they can change their dietary habits and purchase cheap over-the-counter insulin in most states and survive.

From an economic and financial viewpoint, Bernstein’s protocol is also a stunning success. I don’t use an insulin pump or a CGM (I only got to test one out) and yet I can achieve my glycemic targets. I don’t need any apps, certified diabetes educators, or expensive technology. I don’t anxiously await a closed-loop hybrid insulin pump system because I don’t need it. I put all my energy into my simple but effective daily lifestyle. Providers who want to see healthier patients, please read Bernstein’s book. Your lower income patients may not want to follow the regimen in part or entirely but those who are willing deserve to know how to thrive with diabetes despite being poor or lower middle class, like me. I give myself excellent care for cheap–doesn’t that peak your interest?

People are justifiably angry over insulin prices but what about the medical community’s unwillingness to be curious about one doctor’s personal plan to keep himself at peak health and fitness well into his 80s? Without curiosity, what on earth then drives a doctor to investigate the issues in each patient as well as find the proper and least harmful solution? I tell my doctor how I managed a huge drop in A1c for the first time in my life and he has no questions regarding how I did it? I read doctor responses to research that shows a teeny tiny improvement in A1c and now they think “this shows wonderful promise and we should look into it further!”? I basically told my doctor I might have just saved my own life and drastically improved my quality of life, and he’s like “meh”. I told another how I did it and he said, “good for you.” Yes, good for me, but what about some of your patients who are as I was, struggling to get a halfway decent hold on their blood sugar and suffering? What about them? Don’t you have an obligation to check this out? This gives my doctor less work, by the way! For a decade now my doctor does nothing to manage my diabetes–he just orders labs. Aren’t doctors wanting more patients that can manage their blood sugars and don’t need them so desperately at all hours?

It Takes “Too Much Discipline” or “Restraint”

Nothing terrible ever happened by being disciplined. Think of all the amazing people out there and from history–what could they have accomplished without discipline? Probably nothing but a few moments of greatness. Discipline encompasses you within a realm of potential greatness. And if you create a system, discipline isn’t a show of willpower as much as you just loyally following your regular routine.

Much research backs up the potential of the ability to defer gratification. Who is more likely to become successful? The person who can restrict themselves from their impulses and short-lived desires, right? Let me put it this way: who would you rather marry? Someone who can keep their impulses in check or someone who can’t? Or who would you rather be? Someone who doesn’t overeat or someone who regularly does? I remember having hearts in my eyes when my husband told me “I never overeat”. I have long struggled with overeating, and when he said this, I was impressed by him and thought, “wow, I want to be like that.” I believe this is the empowered response. I could have given the common humorous response of “ugh, you make me sick” but where would that have gotten me? Instead, I tried to learn from my husband and improve myself.

I also think the healthy response is to admire someone like Dr. Bernstein for what he has accomplished against great odds. Dr. Bernstein is respected by so many because he created a well-functioning system to get himself thriving and generously shared his findings with others. In fact, as an engineer, he became an endocrinologist so that he could help others after he figured out how to save himself. He should be regarded as an American hero, whether you want to do what he recommends or not.

I believe in freedom and personal rights. I’m an immigrant who is incredibly happy to live in the U.S. Growing up when I found something challenging and I didn’t want to face it, my dad would say “Are you an American or an American’t?” I would often roll my eyes but, yes, I’m an American and believe I have the power to set my mind to improve myself if I want and I’m grateful for those who have set their minds to things and laid out paths before me. Thank you, Dr. Bernstein. I may never reach your astounding level of discipline but what I have been able to achieve with your advice has been most valuable to me and my family and I am forever grateful.

En fin, I’m certainly not saying you should do what he does or what I do. And I can respect wherever you are on your journey. I’m saying that Dr. Bernstein’s method has shown undeniably incredible potential and results and the general lack of curiosity and investigation on behalf of the global medical community makes absolutely no sense to me. There are now thousands of people doing it and doing it well.

Newton supposedly struggled with his ego and an inability to face criticism or questioning during his lifetime. Let’s have his overwhelming curiosity without the pride, his determination to dig and experiment properly without his emotionally unstable and anti-social ways.

I will leave you with one more thought:

Just a little bit less damage sustained is a great deal to the person enduring it, especially when they still have many decades ahead of them.

Why Do We Demand People Understand Diabetes?

Photo Credit: Ana Morales

Photo Credit: moreartplease.com

“Why are you eating that?”

“Why do you have to check your blood sugar in public?”

“Why are you so picky about your food?”

“How come your blood sugar is so often high or low?”

We hear these things sometimes, right?

Even though it can be tiring, over time I’ve learned to welcome any question on the above list and others like it. I appreciate the opportunity to answer these questions and the curiosity behind them. I will quickly admit that in some cases, people aren’t being curious but instead using a question as a way to provoke–in those cases I respond appropriately.

However, curious individuals asking me a genuine question do not cause me to be offended. How can I be offended by someone’s ignorance when I am just as ignorant on other subjects?

I think we should consider NOT demanding people learn what to ask us so that we can have open conversations and get real communication flowing.

Have you felt unsure about asking someone a question for fear of offending them? Isn’t it unfortunate? And doesn’t it lead to you to most likely stay ignorant? Has anyone ever asked you a bold, ignorant question, leading you to an opportunity to clear it up and feel truly heard?

When someone asks you a question, which below example would be the most productive response?

a) “I demand you inform yourself on the right questions to ask me.”

b) “When you ask me about this, please only do so if you genuinely want to know and intend on hearing my answer.”

The answer is B, right?

I’m a wife to my husband of 8 years. I kindly express the ways in which he can support me and share feedback about how something he does or says makes me feel. I don’t demand he do anything because I don’t want to insinuate that if he had the choice, he wouldn’t do it. If that were the case I wouldn’t have married him in the first place.

In other words, If we communicate in the same way we’d like others to communicate with us, I think we will all be better off.

So go ahead, ask me why I’m eating that. I may smile and say, “why are you eating that?” which may lead you to either feel what I’m feeling or you may say “because I love eating this” and then I’ll say “same here”.

The above example leads me to another point. I think we should encourage each other to actually say what we mean. Perhaps what you really want to know is, “why are you eating that cookie, I thought people with diabetes needed to stay away from sugar?” Now that is a question I can answer well for you because I understand exactly what you want to know and why!

“People with diabetes can eat sugar and for different reasons some eat more and some less than others. I am eating a cookie because I want to and am able to cover that cookie with fast-acting insulin. If you want to know why another person with diabetes is eating a cookie you’d have to ask them.”

I could also say, “I’m sorry, it is none of your business.” And you know what, that would be ok, too. I’m very much a proponent for your freedom and mine. You can ask a question and I don’t have to answer and vice versa.

But I am much more likely to answer with the former. I’m enthusiastic about helping others understand diabetes better. I think it helps society’s general understanding of diabetes. Just like I think encouraging questions instead of limiting them with rules and shaming helps society’s understanding of diabetes.

When people say something like, “At least you don’t have cancer” and it gets you upset, resist the temptation to be passive aggressive and just tell them the truth: “That is upsetting because it feels like you are minimizing my situation.” A compassionate and worthy individual would want to hear you out on this and would probably apologize for inadvertently belittling your illness by comparing it to another.

I totally understand the inclination to educate people on what is important to us. However, do you realize how hypocritical it is to tell people they must “get diabetes right”?  Does this mean we should spend all our free time educating ourselves on what is important to everybody else? I have had diabetes for over two decades, write and talk about it for a living, and even I can’t get diabetes right all of the time!

What if we all just drop demands and talk kindly and openly with each other as we go along?

You don’t have to agree with me, of course, but those are my reasons for suggesting we not demand people understand diabetes before they, um…understand diabetes.

Diabetes and Clinical Language Problem: We Have the Power

Recently and over the years, there have been very intelligent and thoughtful written reactions to the way that people with diabetes are clinically labeled as uncontrolled, non compliant and non adherent.

I wanted to share my thoughts today.

First, I think we need to define what “control” means in regards to diabetes and blood sugars.
Clinically speaking, my doctor would label me “in control” or “compliant”. Does this mean I always manage my blood sugars, can always predict them or often have swings that are outside of my ability to manage? No, but it means that my daily readings and A1c are generally considered the best possible for someone without the ability to make their own insulin.
 
Whenever an additional factor is present like gastroparesis, poverty or depression then we ourselves should keep those in mind so that if we do somehow come across the label “non compliant” we remind ourselves that we have our own legitimate reasons for blood sugar instability. While it is nice if others support us, especially for those without the self-confidence to prop themselves up emotionally, I think we should strive to be responsible for our own feelings of guilt. I understand this is difficult depending on who you are, what you have been through, how you were raised to think and so on.
I no longer feel guilty about my blood sugar management when it is poor. I know diabetes is hard and I work to improve it while patting myself on the back for attempting the impossible. This helps me tremendously because instead of sinking at the sound and judgment of a word, I focus more on the meaning of it and what I need to do. I’m not always very good at this but I try to focus on solutions instead of my feelings. I get that this can be very hard. I for one, always initially react emotionally to something and those feelings often overwhelm me when trying to think clearly. Still, I find that it helps to stay rational and try to keep emotions out of the troubleshooting process. 
Better results regarding my diabetes are going to help me feel better so they are my lighthouse.
I can certainly empathize with wanting clinical terms to go away. I’ve always advocated that doctors keep their technical in-house terms to themselves because they do not translate to people and their feelings. The truth is that outcomes are negatively influenced when people are emotionally upset. Doctors should recognize that there are many good reasons why someone isn’t managing their blood sugars as well as they’d like and help a person make improvements wherever possible without using a phrase that doesn’t take their serious effort into account. In-house, fine, I’m “controlled” or “uncontrolled”, whatever. Sitting with my doctor in an office, I’m “doing my best” and then we proceed to improve what needs improving.
 
If a healthcare provider or institution doesn’t want to change their ways of describing me on paper, I’m not going under for it, not going to cry, be hurt, feel inadequate. Not in the least bit. And I hope you don’t either. You are doing the job of an organ! If you are alive you already have my genuine congratulations. Maybe in this context we can all think of control as a clinical term to describe best outcome treatment goals being met? After all, our doctors and clinicians need a way to describe us for data compilation and such.
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In the meantime I suggest not tying any of your value, self worth or personal efforts to language. We have the power to start solving this problem for ourselves and our children by not being victims of words if we don’t want to be. 

 

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.

Sunday Diabetes Blog Week 2015 Check this Blogger Out

Click for the Continuing Connections – Sunday 5/17 Link List.
The very first inspiration for Diabetes Blog Week was to help connect our blogging community, and that continues to be the most important reason it’s held every year.  So let’s help foster and continue those connections as we wrap up another Dblog Week.  Share a link to a new blog you’ve found or a new friend you’ve made.  Or pick a random blog off of the Participant’s List, check it out and share it with us.  Let’s take some time today to make new friends.

 

 

I discovered a blogger that has a sense of humor, a heavy technical slant, has had type 1 since age 4 so I think about 44 years now.  He writes in German and English and shared really interesting posts this week.  I think I’ll be reading more.  Check out Thomas here at: http://thomas-diabetes-blog.com/blog/

Traveling with Diabetes

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I’ve travelled several times each month this year and it’s given me some lessons:

I’ve learned that I get motion sickness on planes and cannot travel without taking Dramamine.  I tried to forego it once and that one time we just so happened to have a bumpy ride.  It is not fun to worry about dropping blood sugars while throwing up and being jostled about in the tiny plane lavatory. 

Taking all the airport stairs and skipping the moving sidewalks (is that what they’re called?) is a good way to combat all the sitting involved in travel.

Staff on planes are always happy.  I still haven’t met one that isn’t, which is freaky, but if I’m feeling low, so far they are quick to grab juice if I need it and want to conserve my glucose tablet stash for later.

The food situation when in an airport is mighty tricky.  Temptation abounds and yet the easiest way I’ve found to travel is to keep it real low carb because if things get hectic, and lately in airports, they always seem to, low carb often saves me amidst skipped blood sugar checks.

Given how close one’s next seat neighbor is in coach, I find it remarkable how injecting insulin in front of that neighbor has never been an awkward experience.  In fact, it’s a great conversation starter and I’ve literally written down each starting line for your own amusement:

“Wow, those needles are tiny, I’m so glad for you.”

“So you have diabetes, huh?”

“OMG, do you need sugar?”

“Ok, what do I do if you pass out on this flight?”

“Wow, in and out, just like that, eh?  It takes me longer to sneeze.”

“How long have you had it?”

And my personal favorite:  “Does it hurt? I’m sorry, of course it hurts, what was I thinking? That was such a stupid thing to say, I’m so sorry, I didn’t mean to say that, I just figured that it hurts but maybe it doesn’t or maybe you’re used to it, is that it, are you used to it? Wait…I take that back, I get migraines and I seriously doubt I’ll ever get used to them.  Just forget I said that, ok?”  5 seconds later:  “So, where ya headed?”

Smile

Diabetes Blog Week 2013 Day 1

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It’s:

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Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?  (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)

 

Hmm…  Ok.  I want my medical team to know that I know that they don’t know as much as they think they know about my diabetes.  I do have to say however, my endo is extremely insightful about my type 1 diabetes.  He doesn’t assume things and he seems very aware of the challenges involved in managing type 1 diabetes and for that I’m grateful.  As for the rest of the team:  Just know that you don’t know much.  That would really help me out.  Really.

Oh and I’ll be happy to answer any questions you have.

How the DOC Helped Me Check Again

Part of a diabetes art showing by Ana Morales

 

There have been times when I’ve slacked when it comes to how often I check my blood sugars.  Sometimes I get down to 4 times a day and I know that isn’t personally enough-not for my aggressive control of blood sugars.  But, I rarely keep that up for long because being connected to the DOC, or Diabetes Online Community, means constant reminders of how important checking blood sugars is along with encouragement and people to really relate to.

In January I ran out of test strips because I had given half of my last shipment to my brother, who was just recently diagnosed with type 1 and then I ran out of money.  I had to put money into paying rent and bills and focused on just getting by while not feeling pity for myself but instead, feeling happy and grateful that I normally am able to afford all that I need for my diabetes.

I made a comment on Facebook about having run out of strips and was shocked by how many fellow people with diabetes suddenly told me they would send me some extras they had.  Several people knew I didn’t have a certain kind of meter and ended up sending me strips and the meter that corresponded.

It has been so heartwarming.  Strips are a precious commodity for us people with diabetes-and they cost a lot  So to me these acts of kindness are HUGE!

I was getting by decently by eating low carb, skipping meals, and trying to constantly guess my blood sugars.  Thanks to certain members of the DOC, I was able to stop the stressful madness and check again.

I can’t thank you enough,.  Thank you, thank you, thank you.

I accepted the help on the condition that if these people ever needed anything they’d let me know.  I hope they know I mean that ;)

Just another reason why being part of the DOC is awesome.

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