Category: Diabetes

Today is the 26th anniversary of the day I was diagnosed with Type 1 Diabetes.  Every year I mark this day on the calendar and anticipate it.  It may seem odd to “celebrate” such a tragic day in my life.  But, I see it as a time to reflect on the years I’ve spent managing this disease and give thanks for being healthy and (knock on wood) complication free after all these years.

I recently stopped using an insulin pump and returned to injections.  There wasn’t one big catalyst for this change.  My pump warranty expired several months ago and my insurance company has made a special deal with one particular pump company that I refuse to use.  I researched other pumps, but didn’t feel drawn to any of them.  I’ve been pumping for over five years, after taking a three year break when Teo was born.  I was tired of being tethered to the pump.

One of the big virtues of pumping insulin is the ability to make small tweaks throughout the day by bolusing (delivering insulin) with the touch of a couple buttons.  The thing is, this makes it really easy to snack all throughout the day or overeat.  For example, tortilla chips at a party.  If I ended up eating more than originally planned, I can just keep delivering insulin to cover them.  I felt ready to be more intentional about my eating and injection insulin would make that a necessity.

Last time I used long acting insulin to cover my basal needs, the best option was Lantus.  I assumed that’s what I’d be using again.  But, my medical team advised that I use a newer insulin called Tresiba.  They explained that it lasts longer than 24 hours so you don’t have to be as precise about dose timing.  Also, it takes a few days to “build up” in your system to work at full capacity.

The first day of injections, my blood sugars ran high ALL day.  I was injecting fast acting insulin constantly.  It was very frustrating, but I remembered the advice about Tresiba and talked myself down.  It was such an opportunity to practice letting go of my need for control and recognizing that change and transition are going to bring emotional upheaval!  By the third day, my blood sugars ran low as the Tresbia was fully functional and I’d quickly become accustomed to bolusing extra insulin for meals.  Eventually it all leveled out and I got the hang of it.

Diabetes has had such a huge impact on my life.  When my blood sugars are high or low, it receives a lot of my mental and emotional energy.  Each time I test my blood sugar or check my continuous glucose monitoring system, the result potentially impacts my emotional state.  A “good” number (typically 80 – 160) is met with satisfaction and contentment.  Whereas a “bad” number (anything outside 80 – 160) can trigger guilt, frustration, and anger.

I sometimes ponder what came first, my desire for order and control (aka perfectionism) or Type 1 Diabetes…?  They have certainly developed simultaneously in my life.  Diabetes provides circumstances that exacerbate my desire for control.  That’s even what they extol as the great virtue of diabetes management: being under control!  However, diabetes also provides many daily opportunities to let go of perfectionism and reject the judgments of personal worth based on the current data point of my blood sugar.

While diabetes can be very demanding, there are many times when it hums along in the background of my consciousness and doesn’t demand much attention.  It can be like time in that regard, while always present, it can also slip by without notice for periods.  Speaking of time, when I was diagnosed doctors said diabetes would be cured in five years.  That was 21 years ago.  While technology has made diabetes much easier to live with and manage, a true cure is not something I anticipate or hope for in my lifetime.  I’m sure they’ll figure out the artificial pancreas or closed-loop system at some point.

I’ve come to realize that managing diabetes will look different throughout my lifetime.    Diabetes management could involve pumping insulin, using injections, manual blood sugar testing or wearing a CGM.  Lots of ways to accomplish the same thing: know what your blood sugar is and decide how much insulin you need.  I’m not going to master one way of managing diabetes and use it forever.  Life isn’t like that, we change, grow and adapt.  This is one of the lessons that diabetes has helped me learn.

It has felt reflective and familiar to write about diabetes this week.  Although I don’t ever get a break from living with diabetes, I’ve taken a pretty long break from regularly writing about it!  For several years I wrote about diabetes for HealthCentral and chronicled both of my pregnancies.  It was my first experience with blogging and very rewarding!

Today’s prompt is: Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with.  Share an interest, hobby, passion, something that is YOU.  If you want to explore how it relates to or helps with diabetes you can.   Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes!

The thing that’s most important to me is my faith in God the Father, Son, and Holy Spirit.  Embracing my own sinfulness and need for a savior has helped me to mindfully surrender to God’s perfect will, more often.  A few years ago, I realized that diabetes was one of the only things that I didn’t take to God in prayer.  I’d pray for my loved ones, for peace, for wisdom and insight, for guidance, for the healing of others, and so many other things.  But, praying for help managing my blood sugar?  Nope, never.  It was like this little segment of my life that I was supposed to control on my own.

Control is something I struggle with and I don’t think it’s a coincidence that the hallmark of this disease I have is “good control”.   Being able to plan ahead, take note of variables, and make decisions on food and insulin all come together to help me keep my blood sugar under control.  When I’m feeling the need for a sense of “control” in my life, I tend to turn away from God.  I stop surrendering and start relying on myself.  I will plan incessantly and start to feel like my own efforts are keeping everything manageable.

When I first realized this disconnect and tried praying about my diet choices and diabetes management, it felt like such a relief!  Letting go of this need for perfection and having “it all figured out” in other areas of my life then flowed to diabetes as I began asking for guidance in managing my blood sugar.

Oops, I’m a little behind in getting this post written!  But, better late than never…

Today let’s revisit a prompt from 2014 – May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

When I think of the emotional toll that diabetes takes on me, the simplest example pops into mind.  For me, each and every blood glucose test (of which I average about 10 per day) provides an emotional response of some sort.  If my blood sugar is “good” – meaning in range between 80 mg/dl and 160 mg/dl, then I’m pleased.  If it’s “really good” – somewhere between 90 mg/dl and 130 mg/dl, I’ll feel a bit of pride and satisfaction, as in “I’ve got this!”

On the other hand, high blood sugars get me down.  They make me feel defeated and slightly guilty for not having either made different food choices, calculated a more accurate bolus, or generally not managing my blood sugar “correctly.”  When I experience a string of high blood sugar, the emotional response is more pronounced.  I’ve often had the experience of noticing I’m feeling down, and when I check in on my emotions to wonder why, I’ll recall “Oh, that’s right, my blood sugars have been running high.”

For the most part, I haven’t ever rebelled against this disease or wondered “why me?”  I took up the perspective my parents instilled, that this disease would make me strong and capable.  I’ve had my periods of burnout, of course, but on the whole I’ve taken blood sugar management as a goal to achieve.  Also, I figure the food restrictions I’ve embraced are just what all healthy diets should consist of, so I don’t feel unduly deprived.  When I was pregnant and on a very strict diet, I loved it!  Something about the control and achieving those “good” blood sugars on my logs felt like getting little gold stars all the time.

I think it’s funny – having diabetes itself isn’t what gets me down, but having a blood sugar of 225 mg/dl can put me in a funk for a couple hours.

Another day of diabetes discussion!  The prompt for today is: Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgment from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!

Diabetes is somewhat unique in that a tremendous amount of care is solely in the hands of the patient.  We make so many decisions each day that impact the quality of our blood sugar management.  As important as the medical advice we receive is, in the end, it’s up to the PWD to implement the advice in their daily choices.  Guilt and shame are part and parcel of living life with diabetes.

Happily, I haven’t had many “diabetes police” type folks in my life.  Nobody has questioned or challenged my food choices or other decisions with any regularity.  But, one specific instance jumped out at me when I read this prompt…

After having a very healthy and happy pregnancy with Sienna, I felt less stress with my second high risk pregnancy.  I was surprised when Mateo had to be admitted to the NICU with low blood sugar shortly after his birth.  At 9 pounds, 1 ounce, he was automatically dubbed a “big baby” too.  When we went to see him in the NICU, I heard the first of the many mentions of Mateo being a “diabetic baby.”  He didn’t have diabetes, of course, they meant that his mother was diabetic and therefore whatever conditions he was suffering were because of his mother’s disease.  Or, what I heard and felt deep in my heart was: “His mother’s poor blood sugar management while pregnant caused whatever is wrong with him now.”  The guilt was severe.

The thing is, my control was very good throughout the pregnancy.  But, I was a few years older and a bit more relaxed than the first time around, plus the fact that Teo was induced a few days later than Sienna (they were both due on January 8th!) all meant that he was bigger and his blood sugar low upon birth.  He ended up being in the NICU for a full week while they ran tests because his oxygen level had gone down a couple times while he was being monitored.  By down, I mean it dropped to 87 to 89% range, while they wanted to see him consistently in the 90s.  They were concerned that his lungs or heart were underdeveloped, because of “maternal diabetes”.  In the end, he was completely fine and I had to challenge the doctor to give me a diagnosis and state that I would sign him out against medical device, if necessary.

The following week, at his pediatricians’ office, I talked to a doctor about our experience.  He noted that Teo likely suffered from “the diabetic baby stigma.”  Ah, that made so much sense.  They were sure that something more serious was wrong because he was a “diabetic baby” and acted accordingly.

If I could rewrite the script for the doctors and nurses in the NICU that week, I’d have them say: “We’re going to run some tests to make sure Mateo’s heart and lungs are fully developed and strong because his oxygen level has gone down a couple of times.  This can be an issue when a baby’s mother had pre-existing diabetes.  We know you took great care of yourself throughout your pregnancy and we don’t want you to feel badly.  These things happen sometimes and we’re going to take all precautions to make sure your son is healthy and whole before you go home.  What do you think?”

That message would have made all the difference during those challenging first days.  I’m grateful for the amazing medical care we enjoyed and know the doctors and nurses were well intended.  They didn’t realize that, to a mother with diabetes, overhearing  references to their son as a “diabetic baby” would cut so deep.

Back with Day #2 of Diabetes Blog Week!

Today’s prompt is: Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?

My experience with the high cost of diabetes management has been relatively painless, but certainly not pain-free.  I say that because I know there are families that regularly have to make the choice between food and insulin.  There are people in this country who die from diabetes complications because they don’t have access to affordable insulin.  In the most prosperous country in the world, that is shameful.

From an economic standpoint, I understand that the innovations and high quality healthcare we enjoy in the United States is due, in part, to the profit motive for pharmaceutical companies. Medicine is a business, for better or for worse.  But, the current system is deeply flawed and it’s my prayer that it is improved during my lifetime.

I have been very fortunate to always have a stash of insulin in the butter compartment of my fridge.  Access to insulin, medications, blood glucose testing supplies, and continuous glucose monitoring systems (when I’ve used them) has not been a significant issue.  However, I’ve had some struggles along the way.

For example, during graduate school, I exhausted my annual student health plan benefit in five months!  For the balance of the year, while working toward a Masters in History and working part time, I had to put the cost of insulin and testing supplies on a credit card.  Dennis and I were dating at that time.  When we were engaged and planning our wedding, I joked with him: “… I’m not marrying you for medical insurance coverage, I promise!”

Dennis works for a national law firm and they offer employees tremendous health insurance for them and their dependents.  Several years ago, when a lot of the insurance plans were still new to me, I talked to a colleague who worked in the insurance industry.  As I described our plan, I asked her: “It’s an EPO and as far as I can tell, there’s no downside.  We have the choices of a PPO and the low prices of an HMO.  What am I missing?”  She replied, “Nothing!  They are the best.”  From then on, I counted our health insurance among our blessings, and never took it for granted.

The thing about having a chronic (and potentially expensive!) disease is that it always has to factor into your planning and decisions.  Several months ago, Dennis and I were talking about the future and considering the option of him changing jobs or even working part time so he could be with the kids after school.  When we crunched the numbers we realized that the cost of medical insurance would become a significant issue.  Since we’ve been married, I’ve joked that Dennis can never retire because I need his amazing insurance.  I didn’t realize how true that was until I pondered life without it.

When I look to the future, I’m motivated to control my diabetes through diet and exercise as much as possible.  Obviously I’ll always need insulin, but eating low carb allows my insulin needs to be low, blood sugars stable, and my overall health improved.  Knowing that, for me, insulin and access to technology will likely be more expensive in the future, I want my dependence on those tools to be minimized.

One day we won’t have the amazing medical insurance that I’ve enjoyed for the past 13 years.  That day when my butter compartment is less full of insulin and my stash of blood glucose testing strips is less plentiful is likely coming.  In the meantime, I’ll keep praying that the healthcare system in America will figure itself out before that day arrives.

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If you’re wondering how you can be educated on this issue or advocate for those who desperately need access to insulin, check out Kerri’s great post at Six Until Me on Day 2 of Diabetes Blog Week!

This year I’m participating for the first time in Diabetes Blog Week!  For the past seven years, I’ve followed along and read posts by other PWD (people with diabetes) around the DOC (diabetes online community), but didn’t share my own thoughts during this special week.  Although Be Still and Know isn’t a diabetes blog per se, it’s written by a person living with T1D (type 1 diabetes) for almost 24 years now, so I decided to join the conversation!

Today’s prompt is: Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

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To be honest, my diabetes is fairly predictable on a daily basis.  Between eating a low carb, paleo diet, having low insulin needs, taking the new medication Invokana, and having well ingrained habits, my blog sugars are pretty stable.  But, just a couple weeks ago, I had one of those days that didn’t go as planned…

For the past several weeks, I’ve been following a more restrictive diet “reset” based on the Fed and Fit plan.  It’s like a Whole30, where you basically just eat meat, eggs, vegetables, low sugar fruits, and nuts.  No grains, dairy, alcohol, legumes, sugary fruits, etc.  My insulin needs are at an all time low and my blood sugar control has been awesome!

So, on a Saturday morning, I got up early to get my log run in and had a blood sugar of 115 mg/dl.  I’d recently restarted the Invokana medication after a brief (and awful!) break for a couple weeks.  Recalling a morning run a few days earlier, I duplicated the bolus for half a Larabar before heading out on the run.  After two miles, I was dragging.  At three miles, I was really dragging, so I decided to test my blood and was shocked to see 54 mg/dl!

As I gobbled down a couple dates, I thought to myself: “What happened?”  On the run earlier in the week, I’d removed my pump for the 5 mile run with my friend, therefore I wasn’t getting any basal insulin during that 45 minutes.  Since I’d hoped to run 11-12 miles on this day, I kept my pump on.  I also didn’t think to decrease my basal rate to 50% until I was two miles into the run.  Thinking back, this amount of insulin I gave myself was consistent with other long runs, but now that I was eating such a low carb diet, my overall insulin needs were just less.

I was able to eek out a 7 mile run that morning, but the low really threw a wrench into my plans!  In the whole scheme of things, this isn’t a very severe limitation on someone’s life, I realize.  But, it’s annoying.  It’s also a reminder that, no matter how dialed in you try to be, blood sugar management is a constantly moving target and diabetes plays by it’s own rulebook and doesn’t share the notes!