Yet Another Unexpected Result

say_wha_by_powerfoxslayer-d4ecqm2-2This has been a very strange week.

Last week, I realized that I ran out of Victoza, which I have been taking faithfully for the last three months. But on Thursday night, I only had enough for 1/3 of my usual dose.

When I went to Target on Friday to fill my prescription, I was told that I couldn’t fill it until Sunday because my insurance company wouldn’t pay for it until the 24th. Well, I was disappointed but realized that because I had increased my dose, I had gone through my supply too quickly.

For three days, I didn’t take Victoza. And to be honest, I didn’t really notice much difference until Monday. But it wasn’t my blood sugars that went crazy. It was my hunger.

I was staaaaaarving. I was like, “OMG, how did I ever survive this?!”

For the past couple of months, I haven’t really been hungry. Sometimes I get little hunger pangs, or sometimes I get a little weak or tired and I realize that I haven’t eaten in awhile, but for the most part, I can go hours without eating and it’s not a problem. But on Monday? My hunger was intense and I did not like it! No wonder I had a hard time losing weight when I wasn’t taking Victoza!

On Monday, I was able to fill the prescription and I started taking Victoza again, but the weird thing is that now my blood sugars are terrible. I’m consistently in the yellow and I can’t quite figure it out.

Victoza is supposed to have a pretty short half life, so my blood sugars should have been a lot worse than they were last weekend, and they should be getting better right now. I’ve changed my pod, am using new insulin and I’m not PMS-ing, yet my blood sugar is still a bit higher than it has been this summer.

It’s so weird.

But I’m riding it out. I’m going to wait and see if maybe another day or two on Victoza helps at all. I’m going to try to watch what I eat a little bit more so that I don’t make things unnecessarily difficult for me. I just hate — hate — when things are completely different from what you expect. I don’t think the Victoza has anything to do with it, because right before I went off of it last weekend, everything was going just fine. In fact, I had made a few tweaks to my overnight basal rate and was feeling pretty good.

So annoying. That’s basically it. Just wanted to share yet another annoyance in the world of diabetes.

What’s annoying you lately? Let’s have a vent sesh. 

Saying Something

photoMaybe you’ve seen that Department of Homeland Security campaign “If You See Something, Say Something.” It was very visible when I lived in New York City, and I hear it’s a nationwide thing.

Well, I’m here to tell you about a different kind of see something, say something.

On Saturday, Erik and I were on a little day trip around southeastern Minnesota, just stopping at various small towns to have a look around. Our first stop was Red Wing, home of the Red Wing Shoes. You could say the most interesting thing we saw was the enormous built-to-scale boot inside the Red Wing Shoe store. But I would say the most meaningful thing I saw was on a much smaller package.

As we walked around the river front area, I happened to notice a young girl with a Quickset stuck on the back of her arm. Now, like most people, I didn’t immediately recognize it. There was a little bit of “Hey that looks like… Wait is that…”

And then I saw the little girl testing her blood sugar while her parents got a picnic lunch read. Then I realized that yes, Virginia, this was a girl with diabetes!

And I immediately had the inclination to say something. But what? I was wearing a dress so I couldn’t exactly flash my Omnipod without, well, flashing quite a bit!

“Me too!” I called out. It was the only thing I could think of that didn’t seem intrusive.

“Really?” the father replied.

“Yep, twenty years.”

I wasn’t expecting a conversation to develop, but the father shared that they were on their way back from a local ADA diabetes camp. We started talking about camp (I went to a diabetes camp out in Oregon for several years), as well as blogging and some of the helpful tips you can learn from other people with diabetes. The girl had learned about putting a pump set on her arm from other kids at camp. I told her about my blog (hello there!) and about all the different life hacks you can learn from the diabetes community that healthcare professionals sometimes just aren’t clued in on.

We only talked for a few minutes, but as I walked away, it dawned on me that this was something that rarely happens to me anymore. When I first moved to New York City, it seemed that I was always running into people with type 1 diabetes. Honestly, it bordered on a  little bizarre how frequently these “in the wild” occurrences actually happened. But overtime it has slowed down, likely because I’m not meeting nearly as many new people as I used to.

I also thought about how I nearly walked by this girl and her parents, and I remembered reading a few recent blog posts about others in our community who sometimes spot PWDs but aren’t sure if they should say something. What if they don’t want to be recognized? What if it’s too intrusive? Or rude? I mean, I know I would love for someone to come up to me if they had diabetes, but I know not everyone feels the same way as me!

I remember one time I was on a bus in NYC and I saw a man with a Medtronic insulin pump. I had no clue what to do, so I tried to be all suave and smooth about declaring my diabetesness by testing my blood sugar in plain sight of everyone, right there on my lap. The guy got off the bus at the next stop without so much as eye contact. Burn.

Finding PWDs in the wild is so incredibly cool, and yet I feel like for most of us, it’s also incredibly awkward. I mean, contrary to popular belief, we do not have a special handshake or catchphrase. Although maybe we should… Somebody needs to get on that.

The best I could think of was to say “Me too.” It wasn’t a question and I didn’t even say specifically what I was “me too”-ing, although in this case, it was a little obvious since she was testing her blood sugar. All I really wanted them to know was, yep, there’s another one out there.

Diabetes has always been labeled an invisible illness, and maybe for some people it is. But I think if you look closely enough, you might realize that it’s more around than you think. It’s easy to be stealth with diabetes. But that’s one of the reasons why I like to test my blood sugar, and why I wore my pump rather visibly until I got the Omnipod (yes, I realize I can wear it on my arm, but I’ve tried it and I found it uncomfortable — had nothing to do with its visibility).

You never know who is going to see something you’re doing. You never know who is going to say something. You never know who is going to make you feel just a little less alone in all this.

On Practicing Empathy

I wrote this blog post last week, before yesterday’s tragic event. However, I didn’t feel like it was complete and I wanted more time with it. After yesterday’s tragic event, I have gone back and edited it a little. Hopefully it helps someone.

Originally, this blog post was inspired by a few things. A blog post from Kerri. A blog from a newly diagnosed adult that Kim tweeted about. A couple of Twitter conversations I’ve had in recent weeks about people in the Diabetes Online Community who appear to be just too damn happy about their diabetes.

Each time this comes up, I cringe. My reaction is to say, “Wait. Are we talking about the same DOC?” Because I see plenty — PLENTY — of tweets, status updates and blog posts about things that are not awesome about diabetes. I also see a fair number of tweets, updates and posts when things are just dandy in the land of the Big D. It depends.

I’ll be the first to admit that I tend to lean more towards to the positivity. I can’t help it. I think it’s just my personality. Heck, I had a blog for awhile that was named after the phrase “When life hands you lemons, make lemonade.” It’s in my nature to be a little more happy, happy, joy, joy. But that’s not to say I’m always like this. I think it’s unfair to assume that people have a static emotional state about diabetes. I rarely have one type of emotion toward anything in my life.

Emotions are complicated. How we feel about something might be very different from how someone else feels. It is our right as humans to have our own unique emotional response to things. People do not have to feel the same way toward things. Sometimes they should, but they don’t have to. We are unique. We have our own ways of experiencing things.

When we don’t understand why someone feels the way they do, it can seem natural to persuade them to feel otherwise. We say that the person needs to cheer up, look on the bright side, it’ll be okay, it’s not that bad, and the mother of all unhelpful statements: it could be so much worse. But all this does is tell the person who already feels like complete and utter shit that they are wrong. They are wrong to be feeling how they feel and they should stop.

Whether you’re talking about someone who has severe clinical depression or someone who is simply upset about a diabetes diagnosis, invalidating their emotions by saying they should stop feeling them is not helpful and it won’t work.

A few years ago when I was talking to my therapist, something profound happened. I was telling her all these terrible things happening to me and how they were making me feel terrible. Maybe they weren’t that terrible, and maybe they were. But what is important was her response: “With everything that’s going on, it makes sense that this is how you feel.”

And it was like a light bulb went on.

My emotions were completely valid. I didn’t have to pretend that I was fine even though I felt depressed, frustrated and angry. And I wasn’t a broken or bad person because I felt this way either.

Likewise, I also want to encourage people who feel fine with their diabetes. There are those out there who don’t feel depressed or upset or angry about living with diabetes. That diabetes is what it is and that’s all that it is. I know that sometimes it can be difficult to empathize with people who have a different emotional state about something. But feeling differently doesn’t negate the validity of how someone else feels.

Before I went into therapy — I’ve been in therapy twice over the years — I couldn’t validate my own feelings. Even knowing the good therapy can do couldn’t motivate me into therapy the second time. I didn’t take my feelings seriously. I didn’t think there was anything that could be done. In the end, I got the help that I needed and things didn’t end tragically. But I had people in my life who recognized what was going on and kept pushing me to make the appointment I needed to make.

I often hear the comparison game made between diabetes and other conditions. Type 1 diabetes is worse than type 2 diabetes, but diabetes is not worse than cancer. The same game can be made with depression. Diabetes distress isn’t as bad as clinical depression. Episodic depression isn’t as bad as chronic depression. Yes, they are all different. But all of them can have a negative impact on your life, and all of them should be taken seriously. You don’t need to have clinical depression to have a mental health problem that needs attention. Feeling like my problems weren’t “bad enough” was one of the biggest reasons I held off getting the help I needed.

Who are we to judge what deserves concern and attention?

We all know that mental health is a serious issue. If emotions are starting to interfere with your ability to manage your health and your life, then you need help. But emotions don’t necessarily always need to be fixed. Sometimes how we feel about something like diabetes is how we cope, it’s how we do integrate it into our lives. If someone is angry or upset about having diabetes, that doesn’t necessarily need fixing unless it starts to affect their ability to live a healthy, fulfilling life.

What I would encourage all of us to do is practice more acceptance of emotions that are different from ours. Empathy is a lost art. At the same time, we need to be vigilant that these emotions do not overwhelm our ability to live our life, or the lives of those we care about. We need to do more real, honest talking. It is so easy to think that there is nothing we can do to feel better. If you want to feel different about a situation, it is possible with a lot of work. But it is possible. It’s something I wish I had learned a lot earlier than I did.

The Case of the Possessed Dexcom Receiver

receiver_angledmgscreenIt all started at dinner.

After ordering my entree, I reached into my bag so I could check on the status of a high blood sugar. I’d overtreated earlier that afternoon and wanted to see how I was coming down. When I pressed down on the black power button, nothing happened. Hmm. I pressed again. Nothing. I pressed a little harder and a little longer. The Dexcom started booting up, as if it had been turned off.

That’s strange, I thought. When it was powered up, it prompted me to enter the time and date. When it got to the trend graph, there’s was nothing. There was nothing on the graph. The entire day had been erased. All my data was gone.

I showed Erik the receiver, perplexed at the missing data. I’ve never heard of this happening. Then the receiver buzzed, asking me to start a new sensor. Well, that’s awesome, I thought. We’re getting ready to go to a show after a dinner and I need to start a new sensor? I was so annoyed.

I started up a new sensor, hopeful that I’d have enough time to boot up the sensor before the play started. I put the receiver back in my bag and went back to dinner.

A little while later, I heard my receiver alarm. Startled by the alarm coming from the sensor still warming up, I took my receiver out of my bag. It was a high alert. I looked at the trend graph. The receiver had completely restored my blood sugars.  I cleared the alarm, put my receiver back in the bag.

After dinner, Erik and I were walking around downtown Minneapolis and I decided to look and see how my blood sugars were doing after dinner. So I reached into my bag and fished out my receiver. But there was nothing. My graph was blank yet again, and the pie graph showing the warm-up was bigger. I couldn’t believe it!

Frustrated, I tossed the receiver back in the bag and we continued walking around Gold Medal Park. Eventually we made our way into the Guthrie Theater for our show. Suddenly I heard my receiver alarming. I was completely bewildered: a warming up receiver should not be alarming! I took out the buzzing receiver and it was telling me that my blood sugar was high.

Completely annoyed with constant back-and-forth with the receiver and not wanting to deal with this as we were starting our show, I turned off the receiver entirely. I decided I would just test during the intermission to see how I was doing instead of relying on this stupid receiver. I shut off the receiver and put it in my bag.

As we sat down in our seats and settled in for the show, the receiver started alarming.

What. The. Hell. Is. Going. On.

The receiver was on. And it was asking me to calibrate.

“I already turned this off,” I told Erik, flabbergasted and a little concerned that my Dexcom receiver had somehow spontaneously turned on.

I decided to ignore the receiver and I turned it off again. I did test my blood sugar to make sure I was doing okay post-dinner, and I tested again during the intermission. The receiver stayed blissfully silent.

On our way home after the show, I decided it was time to take the receiver out and see if I could figure out what was going wrong with it. I thought about how to explain what was going on to the Dexcom Facebook group, and I figured I would need to call Dexcom in the morning. Not only was it randomly losing my data, but it was also turning on and off at will.

I took out the receiver and turned it on. At first it couldn’t communicate with the transmitter, but after a few minutes it reconnected. Unfortunately, it was back to its amnesiac state, completely void of any data. And it was asking me to calibrate.

“I think my receiver is possessed,” I said.

So I took out the case for my PDM and unzipped it. I took the PDM out, but as I did that I noticed there was something else in my PDM bag. Another small, black device. I took it out.

It was a Dexcom receiver.

In my right hand was a Dexcom receiver. In my left hand was a Dexcom receiver.

I had two Dexcom receivers with me!

I turned on the second receiver. It was my current receiver, which had been properly tracking my blood sugar the entire evening except for the two hours while we were at the show when I had turned it off.

Somehow my original Dexcom receiver, the one I stopped using last month after it stopped being able to charge with the USB cable, had found its way into my bag. So I had a Dexcom receiver that hadn’t been used in over a month along with my current Dexcom receiver. Every time I looked at my Dexcom receiver, I was looking at a different receiver!

Case solved.

Integration, Baby!

In honor of my 29th birthday, Insulet and Dexcom have a little announcement they would like to make:

Insulet and Dexcom Agree to Develop a CGM-Integrated Personal Diabetes Manager
New Insulet PDM Will Receive Dexcom G5 CGM Sensor Signals

BEDFORD, MA — (Marketwired) — 08/05/14 — Insulet Corporation (NASDAQ: PODD), the leader in tubeless insulin pump technology with its OmniPod® Insulin Management System, and DexCom, Inc (NASDAQ: DXCM), the leader in continuous glucose monitoring (“CGM”) technology, today announced their intention to allow information from Dexcom’s 5th generation CGM system to be identified, received and displayed on Insulet’s new Bluetooth-enabled Personal Diabetes Manager (“PDM”), currently in development.

This project expands upon the initial agreement announced in June to enable the Dexcom mobile app platform to integrate data from Insulet’s OmniPod System. That platform will be the first of its kind to enable glucose and pump data to be displayed on a smartphone.

“We are pleased to expand our development relationship with Dexcom to receive and display Dexcom G5 Sensor data on our new PDM, eliminating the need to carry a separate CGM receiver,” said Duane DeSisto, President and Chief Executive Officer of Insulet. “This collaboration furthers our shared vision of helping people living with diabetes by providing greater access to the data they need to make smart and effective decisions to better manage and control their disease.”

“We are pleased to be back working with Insulet to bring our leading-edge technologies together to help people living with diabetes better manage their disease,” said Kevin Sayer, President and Chief Operating Officer of Dexcom.

Click here for the full press release and disclaimers.

 

Alright, I’m just kidding. Insulet and Dexcom didn’t decide to restart their partnership in honor of my birthday. But the timing is impeccable, isn’t it?

The Countdown

I made my second first appointment with an endocrinologist in Minneapolis. As you may remember, I had my first appointment at the beginning of June and while the appointment was okay, I didn’t feel that I really jived that well with the doctor. Although he did put me on Victoza which has since gone swimmingly (more on that in a minute), I felt that since I’m getting ready for pregnancy, which is a pretty emotional time, I really needed to make sure that my endocrinologist was someone that I felt completely comfortable with and who I felt really understood me and was on my side instead of feeling like my diabetes was a battle of the wills. I’ve never had that experience, thankfully, but I know enough people who have and it’s not something I’m looking to sign up myself up to.

Anyway, I crowdsourced again to see who might be a good second appointment. I decided to make an appointment with an endo at the International Diabetes Center at Park Nicollet for Thursday, September 18. So I have about six weeks until my next A1C. I’m really looking forward to seeing how the Victoza ends up affecting my A1C overall.

A couple weeks ago, I noticed that my blood sugars were getting harder and harder to stay in my target range. I thought it was because my period, but it didn’t really end when the period stopped. In fact, I had two days of solid high blood sugars which was infuriating. I emailed Jenny, completely convinced that the Victoza affect had suddenly stopped working and I was back to square one. Jenny suggested that perhaps I just increase the dose from 1.2 to 1.8. She said that some people need to titrate up to the higher dose after a few weeks. And as it would happen, it worked! This last week has had some of the best blood sugar (except for the epically awful day) that I’ve had in a long time. Definitely an A1C in the low 7s.

But maybe, possibly, an A1C in the 6s.

45 days…

Valentines-day-hearts-number-6-at-coloring-pages-for-kids-boys-dotcom.svg

 

The Story of the Insulin Onion

I turn 29 years old in 9 days. But yesterday afternoon I was 30.

30 mg/dl, that is.

The day started out as any other. I woke up early so that I could get in a long run — 7 miles — before I was going to meet some other Minnesota bloggers for brunch. Never met them before, so I was excited. The run started off normally enough, but I started to notice my quads hurting more and more, and more and more. Finally, after about four and a half miles I stopped to stretch. It was only then that I could hear a faint buzzing sound penetrating the music in my headphones. I took off one earbud and immediately was crestfallen. The buzzing was actually the screeching of a dead pod.

I was at least two miles from home and my husband was out at our apartment, so I knew I was on my own. Although my Dexcom still had me firmly at 200 mg/dl, I knew it was a lie. I knew that with the 30 grams of carbs I’d consumed and a no basal for God knows how long, the combination of that and exercise was going to spell disaster for me. My body does not like it when I deprive it of insulin. I attempted to run a bit more, hoping that I might either get home faster or perhaps keep my blood sugars down with whatever basal was still in me. But I pretty much failed and practically hobbled home, my legs burning with ketones. (I don’t know if my legs are really burning from the acid of ketones, but that’s what I assume.)

My husband could hear the screaming pod as I walked into our kitchen and immediately gave me a sad face. He knew what that sound meant.

“It’s been dead since halfway through my run,” I said. I asked him to bring me a bottle of insulin, a new pod, and a glass of water. I tested my blood sugar and I was 385 mg/dl. Like I said, the Dexcom lies when it comes to exercise (which is such an unhelpful time to be inaccurate, btw).

I changed the pod and corrected. Then I gave a little bit more for the missing basal. And then I decided to increase my basal 50% because I, you know, assumed I had ketones and that’s what I always was taught. Take more insulin for ketones.

Although I could barely move, I didn’t want diabetes to ruin a perfectly good social event. At brunch, I pretty much ate what I wanted. Sometimes when my blood sugar is high I sort of shrug my shoulders and indulge because, hey, I’m already high, right? Not like I’m ruining any blood sugars here. They already suck! So I indulged in a cinnamon roll, some biscuits and gravy, and pineapple. There was also copious amounts of bacon involved. I kept bolusing for my food.

But I also made a tragic error.

My Dexcom wasn’t showing a decrease in my blood sugars — I was firmly planted at HIGH for a couple hours at this point — so I tested my blood sugar. 455 mg/dl. And I corrected. Not that reduced correction from the IOB I had from previous boluses, but the whole thing. And that was on top of some pretty liberal doses for my brunch.

About an hour later, I had a down arrow at Target. Finally. Whew. And when I got home I decided to take a nap. I hadn’t had much sleep in our first night in our new house, and between that, the 7 mile run, and the crazy blood sugars, I was wiped out. So I took a nap for about an hour or two. When I woke up, my BG was in the low 100s and looked stable.

Or so I thought.

A little while later, my Dexcom finally alarmed that I was low. But a juice box wasn’t enough. I was tanking. And fast. The low blood sugar symptoms were really started to kick in hard and I felt awful. Low blood sugars, for me, are painful. My legs and hands felt like they were being crushed. I don’t know how explain it, but low blood sugars are agonizing.

Dexcom now said I was in the 40s and dropping, not rising. I told Erik to get me another juice box. I tested my blood sugar while he was gone. When he returned, I flashed him the meter.

30 mg/dl.

Not my lowest blood sugar ever (that was a 29 mg/dl at diabetes camp, of all place), but pretty close.

I drank the juice box. I suspended my insulin pump. Erik brought me some chocolate and a graham cracker with peanut butter. Of course, all this food was not reacting well with my Victoza-induced suppressed appetite and I was getting a horrible stomach ache. On top of that, I started sweating profusely. Apparently it was bad enough that Erik started blotting my arms and legs with a bath towel!

My Dexcom swore my blood sugar was rising, but I knew it was lying again so I tested. I was 51 mg/dl. A little bit of movement over the past hour, but not nearly enough.

This is the part of the story where I tell you that I’m an idiot. Because you’re probably thinking to yourself, “Allison, just take some freaking glucagon!” Well, I don’t have any glucagon. Nope, none. I haven’t owned a glucagon since…. Yeah, exactly. I don’t know if I’ve ever filled the prescription in all the years I’ve been on my own. Anything I tell you will just sound like an excuse, which they are. But it just never felt important. Like it wouldn’t matter if I did or didn’t have it.

Well, yesterday, I wished I’d had a glucagon. I thought about calling one of my many Minneapolis PWD friends, but decided to wait just a little longer to see if a third juice box would do anything.

On top of that, I wasn’t entirely sure what I would do with a glucagon once I had one. I was fully conscious and able to eat. I only knew about giving glucagon when you’re unconscious. I figured I wouldn’t need the entire dose if I was awake. How do you dose glucagon for severe lows? At the ADA Scientific Sessions, Jeff Hitchcock had mentioned his daughter Marissa using mini-doses of glucagon when she had low blood sugars and morning sickness, but he didn’t say anything about how much she actually used.

Earlier this afternoon, I had a call with Jennifer Smith, my CDE at Integrated Diabetes Services and I recapped for her the adventures of the day. I asked her how someone should dose glucagon when they’re awake. When do you decide to use it and how much should you take?

Jenny said that using glucagon when you’re awake can be beneficial when you’re either at a very low blood sugar (such as 30 mg/dl) or when you’re not physically able to eat enough to bring your blood sugar up without getting sick (such as morning sickness or if you had a big meal earlier). Very low blood sugar can take a long time to come up and glucagon just works faster. Jenny said that the recommended dose would be half of the glucagon kit. A whole dose is 1 mg, but taking half that is enough to bring blood sugar up quickly.

The low blood sugar seemed to drag on forever, and I couldn’t understand why my blood sugar was tanking even though it had been so many hours since I’d given insulin. My blood sugar didn’t start to really come up until almost eight hours after my last correction, almost three hours after I started treating my low blood sugar! Shouldn’t the insulin be done working by now? Not so, according to Jenny.

She explained that when you give a huge dose, or a lot of doses close together, the insulin forms a bubble under the skin. Rather than just popping, the bubble slowly breaks down. Jenny described this as being a bubble because insulin is a liquid, but I think of it more like an onion. Layer by layer of insulin starts to work, but the inner layers can work until the outer layers have dissipated. The larger the dose, the bigger the insulin onion.

When you take a huge dose, your duration of insulin action is much longer, and your insulin on board might be a lot more than you think. This is what happened to me and why my blood sugar started dropping so far from my last bolus, and also why it took so long to come up. I had a lot more insulin on board than I thought. Jenny suggests splitting a large correction, taking some by pump and some by injection, or splitting your injection into two separate locations. This prevents a big insulin onions from forming.

Eventually, my blood sugar recovered. It actually recovered a little too well, and I almost hit 400 mg/dl again! But I was more careful with correcting and only needed a couple of small corrections.

My blood sugar when I woke up? 90 mg/dl.

layeredonion