Green Light.

I didn’t have that far to go.

When my A1C came back at 7.1% in July, I could see not only from the lab result but also from my Dexcom graph that I was hovering just above my goal of an A1C under 7%. The nurse practictioner was very encouraging that I was very close to getting my A1C where it needed to be to conceive a child, and that it would probably only take some small modifications in insulin and in my habits (::cough:: bolusing early ::cough::) to snag that coveted A1C.

I was groaning about how far away my next appointment was (in all honesty, it was the standard 3 month wait) so my NP offered to order a A1C lab for me that I could take in two months, instead of waiting the full three.

Well, the date for the lab draw finally arrived on September 19, but I hemmed and hawed about whether I actually wanted to go in after all. Recent travel and my latest PMS cycle wrecked havoc on my blood sugar, spiking my blood sugar worse than I had seen in a long time. I wasn’t sure if getting my A1C done would be helpful or just a discouragement.

After another week, and with much more stable blood sugars, I finally decided to get it done. The lab tech said that the labs close at 8pm, so when that came and went, I didn’t think I would hear anything that day after all. But at 11:30pm, an automated email from my clinic arrived in my inbox, telling me I had a new message in the patient portal. I logged in, checked my test results, and found this:

 

Now, I have to admit, it was sort of anticlimactic to see the A1C result I have been waiting for just as I was about to go to sleep. I sort of mumbled to my husband, “It’s 6.9%” before turning off my phone and rolling over to go to sleep. Looking back, I wish I had waited until my next appointment because there was no hug or high five or way to go waiting for me, even though I knew what this number meant. This was the first time my A1C has been under 7% without the aid of other diabetes medications (that means, no Victoza) and I found out in my pajamas.

The next morning I did get a message from my NP telling me good job, and that it was great to have the A1C under 7%, on the way to 6% as I prepare to conceive. Of course, I immediately freaked out, wondering if I had misunderstood everything and that I needed to be at 6% or less in order to get pregnant. I ended up emailing not only her back, but also my endo and Jenny Smith from Integrated Diabetes Services, to make sure I had the stamp of approval. Well, I did.

I never thought so many people would be involved in this decision. Such is the life of a type 1 diabetic, right? But I found myself suddenly incredibly anxious, wanting to make sure that everything was good to go. I suppose this is the beginning of all that pregnancy worry and stress I keep reading other moms-to-be talking about regarding their blood sugar and their babies health. I never imagined I would start thinking about that before I was even pregnant!

In the end, yes, I have been given the “green light” to try to get pregnant. So, you know, stay tuned, I guess.

My next endocrinologist appointment is on October 26 and I will hopefully be even lower. Clarity’s 14-day A1C predictor has me sitting at 6.4% so I’m very hopeful for where I’ll be, and even more hopeful for where I can stay!

 

 

Riding the Waves with Sugar Surfing

Did I ever mention I organized a Sugar Surfing workshop for Dr. Stephen Ponder? No? Okay, well, let me start at the beginning.

I started following the Sugar Surfing page a couple of years ago (like most things, I have no idea how I found it), and I eventually started occasionally interacting with Steve via his Facebook page. Early last year, I interviewed Steve for an article, which sadly never got published, but it was an enlightening conversation that really shifted a lot of my expectations for how diabetes management could actually work.

Then earlier this year, a few parents on one of the local diabetes Facebook groups started discussing Sugar Surfing, and someone suggested trying to get Steve to come to Minneapolis for one of his workshops. Well, by the point, I had already had a few discussion with Steve, so I emailed him and asked him how it worked to get one of his Sugar Surfing workshops to a new city. He told me that they were entirely organized by local volunteers, and that he would be happy to come to Minneapolis if someone could find a venue, recruit vendors, and promote it to get attendees.

So I said sure, sign me up. Okay, it was a little more complicated than that, but we ended up realizing the working with JDRF and ADA wouldn’t work out as well as doing it on our own.

After doing quite a bit of research and emailing, I had secured a location at Open Book, a non-profit organization dedicated to literacy arts, for Saturday, September 24. Perfect for a workshop that inspired a book, right? I was also thrilled to secure three sponsors, Dexcom, Medtronic and Insulet (I had a fourth, Novo Nordisk, but they ended up not being able to attend).

The day finally arrived this last weekend! Because of the timing of flights and when the workshop was going to be, it was easiest for Steve to fly into Minneapolis Friday night and fly out on Sunday morning and stay at our house. My husband and I went out with Steve for breakfast on Saturday morning, where we talked about growing up with type 1 diabetes (he was diagnosed 50 years ago at age 9, I was diagnosed 22 years ago at age 8) and our experiences at diabetes camp.

Steve wears hats. It’s his thing.

After breakfast, we drove to downtown Minneapolis to the venue so we could start setting up. The venue coordinator, Joe, was there to assist Steve in getting the A/V system set up with his presentation, and I worked with one of the parent volunteers to rearrange a conference room to make room for the vendors who were coming. Not too long after we finished setting things up, folks started arriving — nearly 30 minutes before we were even scheduled to start check-in! That’s how excited everyone was! When I finally counted up all the check-ins, we had almost 80 attendees at the event.

The Sugar Surfing workshop was an excellent overview of Steve’s main principles for managing diabetes “in the moment.” He coined the term “dynamic diabetes management” because he believes that we rely too heavily on just “static diabetes management” (basal rates and bolus ratios) to manage our diabetes. Sugar Surfing focuses on analyzing our CGM graphs (or frequent blood sugar testing) to understand what is really going on in the moment with our blood sugars, our food and our insulin so that we can be aggressive and flexible to keep our blood sugars in a tighter range. Although Sugar Surfing uses the surfing metaphor, Steve also use the analogy of driving to with concept of “nudging” or making small changes just like we make small changes so we don’t drift out of our lane. In diabetes, we use “microdoses” or “microcarbing” to keep blood sugars stable instead of waiting for a significant high or significant low to happen.

“Sugar Surfing is a process, not a recipe.”

Obviously there is a lot to share with Sugar Surfing, and I don’t want to take away by sharing too much in this post, so I will just encourage you to order Sugar Surfing, or visit the Sugar Surfing Facebook page or website to learn more!

The workshop last three hours and Steve covered so much information, and went into really in-depth detail about how to make our diabetes technology work for us, rather than just letting them run on autopilot and then wonder why we have so many problems. The workshop also included some book giveaways, one to the person who had diabetes the shortest time (I wasn’t in the room for this, whoops), one to the person who had diabetes the longer (43 years!) and the person who traveled the furthest to attend the workshop (Bloomington, Illinois! We also had folks from Wisconsin and North Dakota).

Left side from the back: Renee, Doug, Stacey Cynthia. Right side from the back: Steve, Mari, me, and Laddie

After the workshop wrapped up, we had a small social media influencer dinner at a local Minneapolis restaurant. We were joined by Laddie from Test, Guess and Go, Cynthia from Diabetes Light, Mari who founded TeamWILD and the ADA Red Rider Program, Doug who is active on Twitter, as well as two mothers of children with diabetes who helped me with the greeting and registration. (If you’re wondering where Scott Johnson was, he was in Vienna on a silly business trip. Sad face.) The dinner was a great opportunity to catch up with some local friend and of course, continue the Sugar Surfing conversation!

The workshop was a great success, and I definitely encourage you to attend a Sugar Surfing workshop if you get the chance! You won’t regret it!

 

 

Hiding Under the Bed

I didn’t mean to go so long between blog posts. I have a couple of review posts planned, but they are still unwritten. For the post part the very end of August and beginning of September seemed rather uneventful. Not perfect (I did go to the Minnesota State Fair and the Renaissance Festival after all), but it wasn’t terrible. 

Even my whirlwind trip to NYC didn’t cause as much damage as I’d anticipated.

So I was busy, and getting started with the semester and my internship, and blogging fell to the wayside. 

But then things got bad. Really bad. Not even something surprising or out of the ordinary (well, that 429 mg/dl was certainly out of the ordinary). If you’re a woman, you probably notice a change in blood sugars around the usual PMS time. And if you’re a guy, well, lucky you. I don’t get moody or break-outs, I get stubborn-as-fuck blood sugars that require a gallon of insulin to get done (I suppose I should be grateful for good insurance, huh?). 

That’s what I’ve been dealing with for about 12 days. Some months I can go through PMS with nary a high blood sugar, and other times it lasts for about 3 days. This month? My diabetes PMS symptoms started a full NINE DAYS EARLY, yo. I can’t remember the last time I felt so aggravated by insulin. I was running a 50% increase basal almost all day (overnights were thankfully pretty uneventful), changing my bolus ratio but still needing at least two, maybe 3 corrections for every high I had. Actually scratch that. That makes it sound like I ever came back to my target range. Guys, I was LIVING in the yellow.

Now, shockingly Clarity reports that my 7-day average is only up by 5 mg/dl. My 14-day average is a little higher than that, but we can blame it on the 429 mg/dl that mysteriously cropped up at my internship last week. I still don’t know how or why it happened, but an injection brought it down and it stayed fairly calm after that and I ended up not needing to change my pod as I had anticipated. 

What’s really irritating is all this started the week before I was going to in for an A1C check to see if I was under 7 yet, but I know the last month is crucial for an A1C and I was already riding the line pretty close to begin with. So I’ve decided to skip it and just wait until the end of October for my regular endo appointment to get my A1C done. I had been so excited seeing Clarity project a 6.6% A1C and it was pretty devastating to see it pop up so quickly even though I was doing so much to get it down. 

So if you’re wondering why it’s been quiet it’s because first there was no time to talk about what I wanted to talk about, and then I didn’t want to talk about what was actually going on. I was hiding under my bed, wait for the misery to pass. 

Self-Reflection: Is Low Carb Worth It?

A couple weeks ago, I wrote about how I was thinking about joining the low carb club. While I logically, critically understood that low carb was going to be better for my blood sugars (because when you have a hard time processing glucose, hello), there was part of me who really, really, really did not want to admit that maybe this was a good idea. The better idea. The only idea?

But the thing with people who are low carb is that it’s kind of like Christians (and I can say this because I am a Christian, so I know). When you meet someone who is in one of these two groups, they really, really, really think they’re right. Like, super right. Only right. Going-to-hell-fire-and-brimstone right. And it’s such a huge turnoff and I want to be like, “Oh yeah? WATCH ME.”

It’s this attitude that has permeated the low-carb-high-fat, ketotic and Bernstein groups that really just annoys the living shit out of me. It’s just smug and arrogant and the worst part is they’re kind of right. But they’re so annoying about it!

I joined several groups after my post because I wanted to “observe the other side” and see what was really going on. Some of their comments about people who eat “high carb” were so nasty. As you can imagine, I didn’t last very long in those groups. All of this happened well before I read Renza’s blog post about feeling welcome in the DOC. There was a distinct lack of welcoming other’s viewpoints and lifestyles in this group. A complete disregard for whether or not someone could live a healthy life even if it was not what you chose to do or what worked for you.

So it made me think about the whole high carb / low carb debate, and it also made me reflect on A1C goals in general. Where do those come from? Yes, we have the ADA / AACE recommendation for under 7%, but if you listened for 5 seconds to anyone in the Bernstein groups, you’d think ADA was trying to kill us all. Which I don’t think is true. But it was interesting hearing that they believe what Bernstein said about “diabetics deserving to have normal blood sugars.” Which I understand is very appealing, but then a friend of mine pointed out that her sanity was also important, and I get that too!

I’ve been thinking for awhile now about why it has taken more than two decades to finally care so much about having my A1C in the sixes. Mostly I think I thought it was too hard, that I wanted to live normal, and that living normal and having normal blood sugars at the same time was just not something you could do. I grew up — or at least since I got an insulin pump 15 years ago — hearing and believing that I deserved to eat what I wanted to eat, as long as I took insulin for it, and I kept expecting that this would work. I really believed that because I had an insulin pump, everything was fine and that I didn’t need to be different. And maybe this is true, but I have recently realized that is so goddamn hard that it might not actually be worth it anymore.

Let me show you a couple of Dexcom graphs, to illustrate my point.

After my birthday weekend, I cracked down on my carbohydrate intake. In addition, I also watched my blood sugar levels like a hawk, taking many small doses throughout the day. My breakfasts consisted of three eggs and sausage, my lunch consisted of a salad with avocado, a veggie (either mushrooms or bell peppers) and more sausage, snacks were usually string cheese or something equally low carb, and dinner was a meat and a veggie. My main source of carbohydrates was the air-popped popcorn I eat nearly every night. It’s my one vice, leave me alone.

Here is a snapshot of those 5 days (Monday, August 8-August 12).

An average glucose of 133 mg/dl equals an A1C of 6.3%. One of my CDEs, Jenny Smith at Integrated Diabetes Service, says that I should aim for a standard deviation of less than 25. Not too shabby at 28. And I spent 56% of the time in range, and although it says 41.5% of my blood sugars are high, it turns out that 37.9% of those blood sugars are between 140-180 and only 4.5% of my highs are above 180 mg/dl.

Now, on Sunday I had another big brunch here at the house, and then my husband went out of town on a business trip. We had a lot of leftovers, so I though I could swing it by just eating what we had. It mostly involved lots of toast for breakfast, crackers and more toast during the day (I went to Chipotle for a salad once), and then macaroni and cheese and leftover birthday cupcakes in the evening. As you can imagine, it didn’t go so well. Even with my attempts at temp basaling and bolusing the shit out of this food, I didn’t do so well.

Here is a snapshot of Monday, August 14-Thursday, August 18:

An average blood sugar of 151 mg/dl is equal to 6.9%, and while yes, my A1C is still predicted to be in the 6s, my standard deviation is now double what it should be. In addition, I’m now spending only 41.2% of the time in range, time low jumped from 1.6% to 4.4%, and I’m high more than half the time at 54.5%. My time between 140 and 180 dropped 10% to 27.3% and my time over 180 jumped from 4.5% to a whopping 27.9%.

You guys, my time spent over 180 mg/dl this week didn’t just double, it increased by 6x!

Okay, so one caveat I want to make is that I stayed high throughout the night because for two nights, I forgot to turn off the vibrate-only setting on my Dexcom, so I never had a chance to correct so it potentially could have been lower. But if you look at least weeks, my blood sugars never went so high overnight that I would have needed to correct. Week 1 is clearly superior to Week 2. You can also see that my highs during the day were much higher and last much longer than the highs from Week #1.

So what does this tell me? Well, it tells me that I need to eat low-carb. Yes, I understand that on very special occasions, like my birthday, I can treat myself. But I can’t pretend it’s my birthday for an entire week (or month…) even though it’s really fun. Recovering from one blood sugar indiscretion is a lot easier than recovering from five days in a row.

One of the biggest lessons I learned from comparing this week and last week isn’t just how my blood sugar responds to different foods, it’s realizing how much time I spend worrying about my blood sugars and how frustrated I get with this disease when I try to act like I don’t have it. It really sucks to admit it, but I do have diabetes and it does actually require me to live my life a little differently than everyone else.

But you know what? So what. Most people can’t do whatever they want because of how their choices will affect them and others. Whether it’s gaining weight or having some kind of food allergy, there are so many people who have to say, “No, I’m sorry, I can’t eat that.” And yes, okay, maybe I can eat that. But do I want to? Do I really want to eat that and then deal with the consequences? We use that term bolus-worthy and I used to think it was cute but I’m not sure I really ever understood it’s definition. What I think it should be is “Is it work-worthy?” because what it takes to have “normal blood sugars” while “eating normally” is that it usually takes a lot of time and effort, with a high risk and usually very little reward.

Am I solidly in the low carb club? Hardly. I don’t think you’re going to hell if you don’t have an A1C in the 5s and I’m not going to try to cast demons out of you if you eat a sandwich. But I do think my priorities are changing. Right now my focus is getting an A1C in the 6s so that I can successfully carry a healthy baby to term. But I am also realizing what a relief on the mental burden of diabetes it is to eat low carb. Because I’m not fighting against my body’s natural inclination to have high blood sugar. The stress and frustration of trying to accurately guesstimate carbs is virtually eliminated. The unknowns of “when is this going to kick in?” or “What kind of temp basal should I use?” or “Am I going to crash at 4 am?” are gone. Everything feels a little more, well, manageable.

I really wanted to believe that people with diabetes could eat anything they wanted, any time they wanted. But I don’t think that’s true and I think most of us know it’s not true. I know a lot of people who have said there are certain things they’ve given up eating because it’s too hard. And I think that’s really what it comes down to. The work. The stress. The success rate. Is it worth the work?

I would never tell anyone to do or not to do something, because that’s not my place. But I would encourage a bit of self-reflection on what’s working. What’s actually working, not what you’ve been told by, well, anyone. You are n=1. You are the only  one you need to worry about when it comes to what you can or can’t, should or shouldn’t, will or won’t do. Don’t listen to me, don’t listen to your Facebook groups, don’t listen to your doctor (well, except for the whole taking your insulin thing, please keep doing that). If someone says “You should do this” and it’s not working, it’s not your fault. You didn’t do something wrong, you didn’t fail at life. It’s just you and how you work and what you need to be healthy and reach your goals. And that’s the only end result you should be looking at.

Every Six Months.

I’m not sure if it’s a good thing or a bad thing that it’s taken me 22 years to hear a “Well….” from my ophthalmologist and a recommendation to come back in six months.

Let me back up.

As most of  you know, yearly dilated eye exams are recommended for all of us with non-functioning islet cells. My appointment was this afternoon and because every other eye exam has always been relatively uneventful, I didn’t really think twice about it. In the past, when I’ve seen an ophthalmologist, I always hear something about one or two microbleeds but that they’re “totally normal” and “nothing to worry about.” And I leave thinking everything’s fine, no big deal, see you next year.

Today was almost like that.

I arrive, get settled in with Dr. B and I tell her that my husband and I are thinking about pregnancy in the next year and that I want to make sure everything is good on that front. After I get my eyes dilated, we do a retinal photography scan because it can show my doc a lot of detail about my eye.

As she’s looking at the giant photograph of my retina (which I can barely see, because of said dilation), she tells me that she’s noticing a few more microbleeds on my eye. One, she notes, looks to be the same as the one before, but now there are a couple others. They are tiny, she says. Really small. But she also shows me a white dot — the dots can be white now? — which has a technical term that I can’t remember and is from a lack of oxygen to part of my eye.

So that’s fun.

Dr. B kept telling me over and over how tiny these bleeds were, how there wasn’t anything to worry about, how the eyes of people who do have diabetic retinopathy look “way worse” than mine. She even went so far as to say that without the retinal photography scanner, she probably wouldn’t have even seen the bleeds.

I think that was supposed to make me feel better…

I get that she doesn’t want me to worry and that there probably isn’t anything wrong, and she even said these could definitely heal up all on their own. But still, just the fact that I have more of them is disconcerting, no matter how innocuous they turn out to be. Even if they’re minuscule, more bleeds are more bleeds, right?

And Dr. B wants to see me back in six months. I have always been a once a year girl. Now I’m an every six months girl.

Noncompliance is real and it is a problem.

When you hear the term “noncompliant,” what’s the first thing that pops into your head? 

Every so often, I find myself observing a conversation or reading a blog post denouncing the term “noncompliant diabetic.” And I get it. Most of the people who say they’ve been called noncompliant by their healthcare professional aren’t actually noncompliant at all. Struggling, maybe, but aren’t we all? 

Because “noncompliant” is a label stamped on nearly everyone who doesn’t meet the Gold Standard of diabetes management, it’s easy to see why it’s such a reviled word. If the very best of us aren’t good enough then clearly the word is just used by mean, spiteful healthcare professionals with their head stuck so far up their asses they wouldn’t know an insulin pump failure if it smacked them in the face. 

But the thing is, noncompliant diabetics are real. And we aren’t taking care of them.

Before I explain what I think noncompliance is, I’m going to tell you what it isn’t. 

Noncompliance is not a glucose test reading. Noncompliance is not your last A1C result. Noncompliance is not your weight or your lab values. 

Noncompliance is not a result, it is an action. To comply is a verb. So what are you complying with? Well, I think broadly you can think of compliance as doing what you need to do to manage your diabetes in healthy way. That doesn’t mean never having spikes in blood sugar, or sugary treats, or always pre-bolusing or testing 15 times a day. It doesn’t mean perfection. But it means that more often than not, you’re testing your blood sugar, taking your insulin and eating food that contributes to better health. That you are doing what you know to be in your best interest, not necessarily what your doctor says, but what you know you need to do to be healthy and live a long, productive life. 

So what is noncompliance? In short, the lack of trying. The lack of effort or interest. It’s know what you need to do and frankly, blowing it off because you just don’t feel like it anymore. 

I’ve known noncompliant diabetics. Hell, I’ve been noncompliant. 

I knew a guy when I first moved to New Jersey, he was a guy I worked with, who was noncompliant. He didn’t test his blood sugars. Like, ever. I was dumbfounded. But he said, “I can feel my highs and lows, so I’m just not going to.” He wasn’t completely noncompliant because he still took insulin, but he was noncompliant with finger sticks.

I met a teen a few weeks ago who doesn’t carb count or take the amount of insulin she’s supposed to. She takes insulin, but spends more time just reacting to high blood sugars. She knows what she should do, but she doesn’t do it.

Now, the problem with this is that a lot of people just stop there. Doctors think they can shame this guy or this teen into behaving. 

“Do you want to go blind / lose a limb / have a heart attack?!?!”

C’mon, you guys. No. No, they don’t. You’re missing the point.

Noncompliance isn’t the main issue. It’s real, and it’s a problem we should address, but it isn’t the end of the road. It’s a symptom of a bigger problem. It could be a symptom of depression, burnout, denial, anxiety. It could even be a lack of education. People with diabulimia are noncompliant with their insulin but you wouldn’t just say, “Shape up or else!” 

It’s like telling someone who is crying because they’re depressed that they should just “Stop crying” because being happy is better for them. No shit, Sherlock. 

It’s a serious mental health issue that we’re talking about. It needs to be addressed. We can’t simply say “There’s no such thing as noncompliant diabetics” because it completely discounts everyone who is and needs help. 

It’s real and it’s a problem for people who really are struggling with this. It’s not everyone. And you don’t have to be noncompliant to be burnt out or depressed (although it’s more common). 

I don’t want noncompliance to be a joke. I want us to take it seriously. I want it to have a clear meaning for people so we can use it to help identify people who are struggling. 

How Low Should I Go?

It’s a question as old as time:

To carb, or not to carb…

For the past 22 years, the answer has been a resounding “CARB!” and believe you me, I have never held back. Of course, I’ve also only had one A1C under that golden standard 7.0% and I’m also sitting here with more than a few pounds of extra weight, so who knows if that was such a good idea after all.

Now that I’m proceeding closer and closer to getting pregnant, I’m increasingly aware that the majority of pregnant women have to go on some kind of low carb diet to maintain any semblance of reasonable control while they’re cooking a baby human. It has me thinking that perhaps I should start investigating more low-carb options for myself, seeing as how I will probably be consuming them even more once I am pregnant. In addition, I don’t think it’s any secret that people who eat a low-carb diet have faaaaaabulous blood sugars.

The kind of fabulous blood sugars that could help a mama-wannabe get her A1C down to where it needs to be. Also, maybe getting rid of some this extra chub? I mean, it would be nice if I didn’t immediately look 25 weeks pregnant.

I’ve always hemmed and hawed about what I want my A1C target to be. For most of my adult life, my goal has been pretty firmly in the 7s. If I hit the 8s, I felt badly about it, but if I was in the 7s, I thought I was doing pretty good. No one seemed to mind too much and it seemed like quite a few other people were around the same range as me (and the folks at Glu back me up on this). The ADA and AACE wholeheartedly recommend under 7%, which I am still above, so it’s not like I’m prancing around telling everyone to be just like me. But it always seemed a little unnecessary to have an A1C so super low, although I wouldn’t ever tell someone they shouldn’t “strive for five” or anything like that. It just has never been impressed up on me that I need to have an A1C in the fives. (Unless preggo.) A1C in the sixes, yes, definitely, although that always seemed to come with the requirements to test all the time, eat very few carbs, and if you did, you better pre-bolus your ass off or else.

Now that I’m getting older and, I don’t know, maturing I guess, I’m starting to reflect on those decisions and figuring out where my priorities are. I also find myself getting flustered when I tell people that my A1C isn’t low enough to conceive. I feel like I’m making an excuse when I say, “Yeah, it’s not low enough to be pregnant. I mean, my A1C is okay for me but not for a baby… I need to be in super good control when pregnant.” And I guess this is true, but doesn’t that just sound awkward? Like, why should I be in super good control for me? Is pizza really that important?

(Answer: depends on the pizza)

Yesterday, I was doing a little futzing around with the Dexcom Clarity website (Dexcom Studio for us Mac users). When I slightly adjusted my upper threshold from 140 mg/dl to 180 mg/dl, I found that my time in range jumped from only 34.8 to 67.4%. That means when my threshold is 140 mg/dl, half my high blood sugars are between 140-180 mg/dl.

This shows me that I’m not that far off from my target range, and it might only take a lifestyle changes to bring those numbers a little further down. If you look at my Dexcom graph, you’ll see that aside from that rather large post-lunch hill, my average line is pretty steady and it’s pretty steady just above my upper threshold limit.

All this has got me thinking, “If my normal everyday living has me in good control, what could I do to get into great control? What would it take?” And honestly, I don’t think it would take as much out of me as I might think. I think a few lower carb meals (especially at lunch, apparently) could start dragging that A1C down while simultaneously also helping me shed some of my unwanted poundage. I don’t think it’s in the cards for me to become a diehard LCHF proponent and never eat a high carb meal ever again, but I’m trying to think of this like how some people do those Meatless Mondays to increase their veggie intake. Sure, some of these steps might seem small to others, but I think small and steady is going to help keep me from becoming overwhelmed with ALL THE CHANGE and also make sure that I don’t feel too insanely deprived.

What are your thoughts on the low-carb diet? What changes have you made recently that have made an impact in your BG management?

 

Is This Thing Still On?

 

Hello.

It’s me.

I was wondering if after all these years you’d like to…

HA.

Just kidding.

But it has been awhile, hasn’t it? Nearly a year! And ironically (or fortuitously) the break came on the heels of a blog post about diabetes burnout in which I said, “Give yourself a break. Just like diabetes, we’ll still be here.”

Well, hopefully this is true. I took a nice long break and the diabetes is definitely still here, so I hope you are too!

So why am I back?

It turns out that I only like blogging when I feel like I have something to say. Actually that probably pertains to every writer, ever. But I digress. For awhile now, I haven’t feel the urge to write about my adventures in blood sugar whispering because nothing very interesting was going on. It was pretty status quo. That’s not even sarcasm or hyperbole. My A1C was 7.8% THREE TIMES IN A ROW. I wasn’t trying any new drugs or technology. I’ve mostly stayed out of the advocacy fray, save for the occasional digital signature on a petition. Literally nothing about my diabetes was changing so I didn’t feel like I had much to add to the conversation.

But that’s all about to change… Eventually.

First of all, the A1Cs are changing. For the better. They’re getting lower. Slowly. (Sloooooooooowly.) But they’re getting there. In March, my A1C was 7.6%. Yep — a whopping .2% lower than the previous three A1C results. My latest endocrinologist appointment was last week, and that A1C rung in at 7.1%.

We’re almost there…

Can you see where I’m going with this?

Do you need a little bit more time to think about it?

Okay, okay, before you get too excited I am not pregnant. But I’d like to be! Soon. Ish. You know, soon but not too soon.

If you follow my other blog (which is sadly probably going to be replaced with this one for the time being — yay flexibility and personal freedom!), you may know that I start my internship for my Marriage and Family Therapy program next month. This, coupled with a massive paper I have to write, heralds the completion of my Masters program next Spring. (Cue the freak out.) After which I will take a super hard exam and become a Licensed Associate Marriage and Family Therapist. It takes another 2,000 hours of supervised instruction and an oral ethics exam to actually become a fully licensed LMFT with all the right and privileges granted herein.

All that is to say: I want a baby. I wanted a baby, like, yesterday, but you know, timing. 

As I mentioned before, my A1C isn’t low enough. In fact, I’m right on cusp. But there’s something about making the leap from the 7s to the 6s (just like the 8s to the 7s) that is so insanely hard. So even though most people start pregnancy blogs later (when they’re, gasp, pregnant), I want to start it now.

Because when you’re a woman with diabetes, pregnancy doesn’t start when the sperm hits the egg. It doesn’t even start with the “Hey, do you want to make a baby?” Pregnancy for a woman with diabetes starts weeks, no, months earlier with a “Do you think perhaps you will want a baby in like six to nine months?” Because it could honestly take you that long to break your A1c Groundhog Day cycle and get it to where it needs to be. (And this doesn’t even take into consideration all the other legwork a woman might need to do to get pregnant — screw nine months, it’s takes freaking years to have a baby).

That’s where we’re at right now and that’s what I’m going to start writing about. All the changes — big and small — that I’m doing to dial that A1C down into the 6s (without the help of Victoza, because sadly, it’s not kosher for baby).

Oh! And another reason I wanted to start this up is because I’m having the damnedest time finding any diabetes pregnancy blogs! What gives? I know of the obvious one, but she’s giving birth next month so that almost doesn’t count. I have found a handful of diabetes pregnancy ladies on Instagram, and while I love Instagram it’s not really the same. So if you are pregnant and have type 1 diabetes, leave a comment!

 

Friday Five

Hope everyone is enjoyed their short week! It was pretty busy now that I am back in school (my fourth semester), so I thought I would do a little update bullet point style.

• As I just mentioned, I have started my fourth semester in grad school (in case you are new, I’m getting my Masters in Marriage and Family Therapy). My classes this semester all have insanely long titles: Ethical Issues and Professional Practices in Marriage and Family Therapy, Advanced Application of Relational Theory, Assessment of Children, Couples and Family, and Therapy with Couples and Intimate Partners. I’m also taking two one-credit classes, Professional Issues and Orientation (I transferred between the Counseling & Psych program and the MFT program, so I’m a little late taking this) and Special Topics: Medical Family Therapy.
• Medical Family Therapy is, as you can probably guess, what I’m really interested in doing as a professional but it is proving really difficult to pursue as a graduate student. There aren’t any internships in the area that really focus on counseling people with medical conditions, and most of the education is at the doctoral or post-doc level. Which means if I really want to get specific, I will probably need a PhD. The jury is still out on whether or not I will actually do that.
  • People ask all the time when I’ll be done. The answer? I don’t know. Probably sometime in 2017, as that’s probably when I’ll finish my internship. But I will be done with classwork next summer.
• I have put in a call to Dexcom to get the new G5 system. Unfortunately when I followed up I found out that they had my old New York endocrinologist on file, which is probably why I hadn’t heard anything yet. But I corrected that so hopefully I should be getting the system soon. Has anyone else received it?!
• I was hoping that it would arrive by the time I run the Medtronic Twin Cities Marathon (on October 4!!) but I don’t think that’s going to happen. I have been doing a lot of testing on my training runs and I think I have more or less figured out how to run long distances without dying. I’ll share some of what I’ve learned in an upcoming blog post (yes, I will try to blog more than once a month!)
• And finally: GOOD LUCK to all of the Riding On Insulin athletes who are tackling freaking IRONMAN Wisconsin this Sunday! There are 70 people participating, and over half have type 1 diabetes, including one my best friends and a DOC favorite, Caroline. Crazy awesome!! I wish I could be there this weekend (kinda sad since it’s only 4 hours away in Madison), but I know everyone will rock it! Can’t wait to read all the stories!

Diabetus Overwhelmus

It’s no secret that I have been writing about diabetes, in one way or another, for a long time. About half my life, actually. And I’ve had the disease itself for about three-quarters of my life. That’s a lot of time centered around one not-so-great aspect of my otherwise very full and happy existence.

Diabetes social media, whether that blogging or Facebook or Twitter, has always been just one aspect of what I do to stay involved in the community. My biggest contribution, I think, is the freelance writing that I’ve done for different publications. I’ve written for my own websites and I’ve written for other websites and publications, but they have by-and-large been about others: other people, other organizations, other insulin pumps, technology, cure research, what have you. Occasionally a personal essay may make its rounds, but the diabetes writing that I really enjoy has nothing to do with me.

And I like it that way. Personally, I don’t find my diabetes to be very interesting. Sure, I could write about how my low blood sugar this morning thwarted my training run because I had a limited amount of time before class. Sure, I could write about the screaming high blood sugar I had because I wasn’t paying attention to how many delicious chocolate chip cookies from the Minnesota State Fair I was actually eating. Sure, I could write about a variety of other situations that happen on a near-daily basis that I’ms sure could give plenty of fodder for this blog but you know what? It’s boring. (To me.) I have never been able to sustain a five day a week posting schedule because I don’t find it terribly interesting, and if I don’t find it interesting, it’s going to be difficult to convey it in a way that is interesting for other people.

So I don’t do it.

I think has really helped me not burn out from diabetes social media, because I don’t place any kind of expectations on what kind of volume or what kind of stories I’m going to churn out for the masses (that would be you guys). When I do find something interesting to share, then I’m really grateful that I have a place to do it, and I’m even more grateful that I have readers who are willing to stick with me even though I’m not entirely dependable for new material.

I go through waves on other social media platforms. Sometimes I’m really engaged with Facebook groups and Twitter chats, things like that. And other times, I want to focus on the other interests of my life. For instance, I’m reading a lot of running blogs right now because, hello, running a marathon in five weeks!

In general it’s important to be a well-rounded individual and not feel like you have to be solely dedicated to just one aspect of your life. People should be free to come and go as they need the help and the guidance. Personally, I’m doing pretty well emotionally with living with a chronic illness, but I know that I always get a little depressed and mopey about it when January comes around and I’m facing down another diaversary. That’s when having the social support is really crucial for me, and luckily I know that it will be there.

I’ve been noticing a few more people these days posting (even before this Diabetes Burnout Day) that they didn’t really want to blog about diabetes and they were taking a break. Or some people just took a break without saying anything. Or the frequency of their posting has, like me, slowed down. But those were also the people that I have known the longest. Meanwhile I know that there have been dozens of newer blogs who have been writing with great fervor. I think that’s exactly the way it should be.

It’s a circle of life of sorts. Those who started a long time ago will need a break, and the new guys will take over for awhile, and then they’ll get tired. And so on and so forth. Because nobody can sustain the same thing endlessly, especially when it’s something as frustrating and irritating as diabetes. Living diabetes is tiring enough, but making it a hobby? That’s really hard. Remember to diversify. Give yourself a break. Just like diabetes, we’ll still be here.