Read Me: SuiteD + Diabetes Forecast

acqbjeKKiAs most of you know, I don’t just write about diabetes here at The Blood Sugar Whisperer. I freelance for a number of diabetes publications, and right now I have a couple new things up at SuiteD, which is Insulet’s community of blogs, and at Diabetes Forecast, the publication of the American Diabetes Association.

I have wanted to write for Diabetes Forecast pretty much since I started writing about diabetes more than 10 years ago, but never had the opportunity until recently. You’ll be seeing a lot more of me in the pages of DF! But for right now now, you can read about finding the right lancing device in Diabetes Forecast and also on their website.

Over at SuiteD, I’m sharing my thoughts on the benefits of pumping while exercising

Exercising is not something that comes naturally to me. I’ve never been an athletic person! So it’s easy to want to give up when it’s both hard on the body and hard on the diabetes. Luckily I’ve found that using an insulin pump has helped in many different ways as I try to stay active.

The post says I’m training for my first half marathon, which isn’t true anymore because I already finished my first half marathon! Right now I’m starting to train for a couple of other races, which I will be sharing with you very, very soon!

Threshold

How long does it take you to change something?

I recently finished an article for Diabetes Forecast about using CGM data, and one thing that I learned was that patterns can be identified when they happen more days than not over at least two set changes (so that you’re not making changes based on bad absorption or insulin gone awry).

The other day I was dealing with a 300 mg/dl blood sugar with two up arrows and I was at my wits end. I had been dealing with crazier than usual blood sugars and I couldn’t identify the problem. The only time my blood sugar came anywhere close to normal was when I gave a huge injection via syringe, and that just ended up with me crashing to 55 mg/dl at 5 am. Not exactly a pattern I wanted to maintain.

Were all these highs because I wasn’t exercising quite as often? Maybe. Was it the Thin Mint Girl Scout cookies I was eating? Could be. Was it my menstrual cycle? Probably not, I wasn’t due for another two weeks. My pod rotation is pretty good, and I had problems over two pods, so I thought perhaps it was time to change my basal rate or bolus ratio.

After a pho lunch at a Vietnamese restaurant (which was the cause of this particular spike), I almost headed across the street to a coffeehouse with the best chai tea, thinking I should at least hold out until the evening before making any decisions about tossing the pod I was wearing. But I just couldn’t shake the feeling that there was something more to it than just needing some tweaking.

When I got home, I decided to use a fresh bottle of insulin. Within a few hours, my blood sugar was back down to normal.

So all of this made me think about thresholds. How long do you stay miserable before you do something different? On our CGMs, our thresholds warn us that we need to do something. They are super helpful when it comes to making in the moment decisions about whether to drink some juice or shoot up some insulin. But what about other kinds of thresholds? Like, the threshold for how many times you can go over your threshold before doing something to identify and remedy the problem. Whether that’s sticking with the same bolus ratios or basal rates despite knowing that it just isn’t quite cutting it, or maybe it’s a insulin set that’s past due, or an insulin bottle that just needs to be thrown out. Sometimes I find myself suffering with consequences without actually addressing what’s causing them. Why do I wait so long to do something? Why did I wait almost 3 days before deciding to change the bottle? I came precipitously close to living another few hours with dangerously high blood sugars. Why was my threshold so high when it came to making the changes I need?

I often see this when it comes to changing my basal rates. I will give correction bolus after correction bolus like insulin is water and sleep ain’t no thang, when really just a small tweak in the basal is all I need to flat line over night and I can wake up (more or less) completely refreshed. I can’t figure out why my tolerance for nausea,  unquenchable thirst and blaring alarms is so high.

What’s your threshold? How long do you wait before you do something? 

The Four Meme

4-2The Four meme is making the rounds and I thought it would be something fun to post. I don’t really post non-diabetes things here, so this will give ya’ll a chance to get to know another side of me!

1. Four names people call me other than my real name.

To be honest, no one really calls me anything besides Allison right now.

1. In high school, some people called me Ally if there was another Allison in my class.
2. At diabetes camp, my camp name was Angel.
3. My husband calls me babe and other assorted nicknames.
4. Very few people call me Mrs. Nimlos, but I suppose it has happened.

2. Four jobs I’ve had.
1. Assorted food service jobs in high school and college
2. PR professional
3. Assistant editor at DiabetesMine
4. Retail associate

3. Four movies I’ve watched more than once
1. Star Trek: First Contact (I am a HUGE Trekkie, and so sad about Leonard Nimoy).
2. Ever After (a Drew Barrymore Cinderella adaptation movie)
3. You’ve Got Mail
4. Clueless

4. Four books I would recommend
1. Life of Pi by Yann Martel
2. The Diary of Anne Frank by Anne Frank
3. Man’s Search for Meaning by Viktor Frankl
4. The Immortal Life of Henrietta Lacks by Rebecca Skloot

5. Four places I’ve lived
1. Eugene, Oregon
2. Hoboken, NJ
3. New York City
4. Minneapolis, MN

(among other places — I’ve lived in 8 cities in the last 10 years)

6. Four places I’ve visited
1. England
2. France
3. Canada
4. Mexico

7. Four things I prefer not to eat
1. Tomatoes
2. Brussels sprouts
3. Peas
4. Cooked spinach

8. Four of my favorite foods
1. Popcorn
2. Indian
3. Thai
4. Ethiopian

And cupcakes, of course.

9. Four TV shows I watch
1. The Walking Dead and The Talking Dead
2. Downton Abbey
3. The Originals
4. The Vampire Diaries

Four things I’m looking forward to this year
1. Visiting Oregon for one of my best friend’s wedding
2. Going to Hawaii for Christmas
3. Running a Ragnar, benefitting JDRF
4. I’m not sure I’m looking forward to turning 30, but I’m certainly anticipating it…

Four things I’m always saying
1. “What are you shopping for?” (at Pier 1)
2. “Have you ever had a gait analysis?” (at the running store)
3. “How many carbs is this?” (at home, to my husband)
4. “Can you hand me my diabetes kit?” (also at home, also to my husband)

So there you go! A little bit more about moi.

Resilience

Forgiveness of self and forgiveness of others leads to resilience. This is something that my professor said the other night in my Foundations of Family Therapy class. It stuck in my head and I have been thinking about it ever since.

The thing that stood out to me the most about this sentence was the idea of forgiveness of self. When I was in college, I was meeting regularly with a therapist. One of the things that I learned from talking to him was that whenever something would go wrong in my life — and at the time, it was, of course, a relationship with a boy — I immediately thought that it had to be my fault. I often thought to myself, “What did I do? What did I do wrong?” I had placed this undue responsibility for things on myself and I couldn’t figure out why that was.

Eventually I figured out that it was a thought pattern that had been ingrained in me since I was diagnosed with diabetes. Every time I had a high or low blood sugar, I would analyze what went wrong and what I could have done to prevent it.

It took me a long time after coming to that revelation to break the habit of so much self-blame when it came to managing my diabetes. I slowly worked my way out of the pattern of thinking that I was always responsible when something didn’t go the way I wanted. Of course, I don’t completely let myself off the hook when I do something that doesn’t work out but it’s not my automatic assumption. So part of it is recognizing the areas where I need to take responsibility and forgive myself for making unwise choices because, hey, I’m human, and then recognizing the areas where I don’t need to take responsibility because, hey, I have diabetes. Shit happens and not all the shitty stuff is my fault.

This is something that I still see so often in social media. There is so much self-blame that goes on in diabetes management. Our medical community doesn’t help the situation. The entire way that diabetes management is set up is very focused on what the patient does (or did), versus what the diabetes is doing. But once I learned to quit blaming myself when something went wrong, I think that it made the mental aspect of managing my diabetes a little bit easier because I didn’t take things personally. I think it’s helped make me more resilient in the area of diabetes burnout because I don’t view a high blood sugar as a personal attack on my character. I don’t like having a high blood sugar, and of course I don’t like having diabetes and I don’t like the way that diabetes makes me physically feel.

I’m not perfect in doing this all the time. And sometimes when I do know that I did something wrong, I either get overly aggressive in how I feel about it (i.e. “How stupid can I be?!”) or I completely dismiss anything and I don’t learn from what happened. That’s why the idea of self-forgiveness really resonated with me. There is still so much responsibility in diabetes, despite the fact that we live with an unpredictable disease. I think remembering that I’m only human and sometimes I’m going to choose to make choices that didn’t work out. And although diabetes is not a person and not really something I need to forgive, I think it’s important to be forgiving and understanding of the situation. It doesn’t necessarily making life with diabetes easier, but I do think that working on this has made it a little easier to be resilient in the face of all the challenges.

Share Your Thoughts On Insulin Pens!

images-3One of my good friends from diabetes camp is currently studying Industrial Design at Arizona State University and his project right now is on insulin pens!

He would love to get some feedback from folks who use or have used them. Although it says insulin pen, it can also be pens for other medications, like Symlin or Victoza (I use a Victoza pen right now, and have used Humolog pens in the past).

It’s an easy 10 question survey, so hop on over by Friday, February 27 and let him know what you think would make insulin pens better!

 

An Animas Pump On The Beach In Mexico

Last Tuesday was my 21st diaversary. I celebrated by going to Mexico.

Well, we didn’t really go to Mexico because of my diaversary. We were already planning to go, and I thought it would be fun if it happened to coincide. Turns out, I was right.

The day after my 21st diaversary, I saw an Animas pump on the beach in Mexico. It was clipped to the bikini bottom of an older blonde woman. I thought about calling out, “Hey, nice pump!” but I didn’t know if she spoke English. Or if she would hear me. And it would be kind of awkward to yell something like that and not be acknowledged, so I didn’t say anything.

Later on, I did hear her on the phone speaking English. And I thought again about going over and saying hello. But I didn’t. What if she doesn’t like to talk about her diabetes? What if she doesn’t want to talk about it while on vacation?

We’re in Mexico, after all.

photo-10

So I kept reading my book, but after awhile the sun went down and it got cool in the shade. We walked over to the pool and got in. In the pool with us was a blonde woman, but I wasn’t sure if it was the same person. She was wearing a hat this time and I couldn’t see her bathing suit beneath the water. We made circles around each other for awhile, and then Erik and I decided to climb into the hot tub. Perhaps not the smartest idea while wearing an Omnipod (cooking insulin is never a good idea) but my blood sugars were so terrible that whole week that I wasn’t convinced it would make much of a difference. But that’s besides the point.

The woman eventually came over and got into the hot tub. It looked like the same bathing suit, but she wasn’t wearing the pump anymore, which I thought was strange since Animas is waterproof. We introduced ourselves, and we chatted about the resort and what we had been doing in Mexico. We talked about work, and soon her two friends joined us. We talked about where we were from (she’s from Montreal), the weather (way better than where we’re from), and skin cancer (it made sense if you were there).

But we didn’t talk about diabetes. At one point, I got out of the pool to use the restroom, and I tested when I got back (still high). I don’t know if she didn’t see me test or if she didn’t want to say anything, because she didn’t say anything. Neither did I.

Then later, she got out to test and ate some dates. I caught her eye, and smiled. But when she got into the pool again, she didn’t explain what she had been doing.

We probably spent over an hour in the hot tub, and the word diabetes wasn’t uttered once.

But we were on vacation. And I didn’t really want to talk about diabetes. But I felt really guilty about it.

What if she doesn’t know anyone else with diabetes? What if I’m her only chance to get connected to the community and know that she’s not alone? I started making a mental list of all the Canadians I knew with diabetes. Maybe a little ridiculous of an assumption, but I felt really panicked about not asking about her diabetes.

In the end, I think it was the right decision, though. I was on vacation. I wasn’t having the greatest diabetes week. Even though I just marked another successful year with diabetes, I just didn’t want to talk about it. And I bet she was probably happy to not have to talk about it either. It was nice chatting with people regarding something other than our mutual health conditions.

A couple weeks ago, Erik and I were having dinner with some other couples. It was our second dinner, but it was the first dinner where I decided to mention that I have diabetes. We were talking about theme parks and I mentioned the disability pass trick we sometimes use. Then one of the husbands mentions that he also has diabetes. I had no idea! The conversation lingered on diabetes for awhile, and I felt self-conscious about all the attention.

Not all attention is bad, of course. Earlier this month, I met a woman at the gym who also wears an Omnipod. She glimpsed it when I had partially lifted my shirt to adjust my sports bra. She had been diagnosed 3 years earlier and told me that she had never met anyone else with diabetes.

Me? I’ve never seem to have any trouble. I even find them in foreign countries.

 

Adverse Effects of the Rare and Unusual Kind

confused-smileyIt was the burping.

There are a lot of side effects that you hear about with medication. Headache, nausea, vomiting, gastrointestinal distress, mood changes. Death. (I still can’t figure out how that’s a side effect.)

But for me, it was the burping.

Actually, it wasn’t just the burping. It was the gastrointestinal distress that really set it off for me last August. It came, quite suddenly, and it was miserable. And I couldn’t figure out what the hell was causing it. I hadn’t started anything new. I wasn’t eating anything new. Was it just “one of those things”? Had I suddenly developed a food intolerance? I had no idea.

So I did what anyone with a confusing stomach problem and an autoimmune disease would do: I gave up gluten. For three whole months. I only ate it a couple of times, to see “test” it out and it seemed to confirm that I was now intolerant if not completely allergic to gluten. Celiac panel was negative, but lab results can lie. Right?

Even with no gluten, I still had symptoms. But there was a new one.

Burping. I don’t know why, but my body decided to react to whatever it was I was doing with burping. All the time. Like, every five minutes. Another little burp. I would wake up in the middle of the night with stomach pains, get up to go to the bathroom, only to reason I needed to let out a belch. It was Horrible.

I googled the shit (sorry, bad pun) out of burping to see what it meant, and it really led me to absolutely nothing useful. But I kept up with the gluten-free diet, because it was the only thing I had to go on. My symptoms were less than they were before I was gluten-free, and no other nutrient had consistently bad effects.

I had almost come to accept that I was now one of the many people who had to live a gluten free life. And for the most part I was pretty okay with. Gluten free bread? Kinda tiny, but not bad. Gluten free cookies? Pretty tasty. Gluten free pasta? I’ve been eating it since before gluten free was cool. Gluten free pizza? Well… like I said, I was pretty okay being gluten free. I wasn’t totally okay.

My late December endo appointment arrived and I checked in with my endo about my new dietary habits. She thought it was kind of weird. She didn’t think I suddenly had a gluten intolerance. She thought it was the Victoza.

My precious, darling Victoza.

Which I had gone up in dose in late July.

She suggested that the higher dose might be affect my gut motility so much that I could handle certain foods anymore. Eliminating the gluten protein might just be mediating the effects.

“We really don’t know that much about Victoza in type 1 diabetics,” she explained. “It’s not working the same in you as it does in a type 2 diabetic because you don’t have a functioning pancreas.” She suggested that because it couldn’t do anything to my pancreas, that the drug might be focusing its action entirely on my digestive track. She recommended that I lower my dose to what I was taking at the beginning of the summer, when I wasn’t having the symptoms.

She told me to wait a month. Then add gluten back into my diet.

Well, I made it two weeks. Because I’m going to Mexico next week and I’ll be damned if I needlessly avoid flour tortillas and cinnamon-coated churros (hey, it has cinnamon — it must be good for me!).

So I had gluten one night at a dinner with a local book club. Nothing happened. A few days later, a muffin. A couple days after that, a Quiznos sandwich. It’s been one week. So far, nothing has happened.

In fact, everything seems to be quite normal.

Of course, with the sudden appearance of gluten back in my diet, I’ve, um, indulged a little too much so I need to work on not going crazy with the junk food. But it does seem that my body might do well on Victoza, but it doesn’t do well on too much Victoza. And that to me makes sense because there are other medications, like anti-depressants, that can do wonders on the right dose. But if you take too much or too little, things start to go a little crazy.

I’m back down on a 1.2 mg dose of Victoza. It doesn’t suppress my hunger quite as well as 1.8 mg did, but I’m also not crazy ravenous as I was before. So far I haven’t seen the need to change my insulin doses at all. As long as I continue to watch what I eat and exercise regularly, I don’t imagine that I will gain any weight but I know I have to keep a close eye on things to make sure the reduction doesn’t have any negative impacts.

But at least the burping is gone. Burping is the worst.