Category Archives: obstacles

Sensors and Censors

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F***!!!!

Anger is an interesting emotion. It heightens your senses, it gives you a physical reaction. It’s powerful. It can spur you to take action- for better or worse.

I’ve been feeling a lot of anger lately. But this anger feels different. I’ve been struggling to figure out what I can do with this anger, how I can channel it into something productive. Something that can solve the problem so there are less angry situations, something that will make me feel at ease. But what makes this anger different is that I feel completely trapped in the situation. It’s a situation with limited options to make it better, options that while might temper the anger, will have other negative consequences, potentially even to my health. I weigh these pros and cons and I feel a sense of helplessness.

With my new pump, I’ve been using new sensors. These sensors are what the pump relies on for blood sugar numbers to make decisions to give more or less insulin. They are what the defining feature of this pump is dependent on. These sensors are supposed to last 7 full days. This was already a disappointment as the sensors I was using before often lasted 10-14 days. In reality though, these sensors are lasting around 5 days on average before a new one needs to be inserted. And after day 4, for the rare ones that do last longer, they are becoming less accurate and need more calibrations. They end up waking me in the middle of the night when the calibration only lasts 6 hours instead of 12.

changesensorYesterday, after wearing the sensor for 3 days, I got a message that the sensor was updating and then a message that said, “Change sensor. Sensor not working properly insert new sensor.” In that moment I was furious. I screamed obscenities in my head at my sensor and texted my boyfriend the picture of that screen with 10 emojis of the middle finger and angry faces.

So what’s the big deal changing a few days early?

  1. It’s disruptive. It means the pump isn’t working to its full potential. It means until I change the sensor, I don’t have information about my blood sugar without poking my finger. So now I’m having to poke my finger more, I’m missing the data I rely on, and I’ll have to wait up to 2 hours for it to start again.
  2. It’s a pain, literally. Sometimes the insertion hurts, and I don’t know about you, but I don’t like doing things that hurt more often than necessary.
  3. It’s expensive. The faster you run through them, the sooner you have to order more. And they are not cheap.
  4. It wastes time. Medtronic will replace many of the sensors, especially ones that stop working after only a few days. But this could mean being on the phone for anywhere between 20-45 minutes with the person. Then having to wait while they ship a new sensor out.
  5. It’s supposed to work! Forgive me for thinking that the expensive medical device that I use is supposed to be reliable and consistent and accurate and cause less hassles, not more.

I understand that this particular pump is new, and by being one of the earlier people to get it, that there may still be kinks that they’re working out. But I also still feel like my anger is valid. So when I see that screen that tells me to change my sensor days before I should be, I get angry. But I also feel stuck because I made the decision to switch to this pump. And this is the reality. Can I get a different pump? Maybe? Might be a hard sell to my insurance who only covers new pumps every 3-5 years. Do I really want a different pump? I don’t know. When it’s working, the pump is great and truly is cutting edge.

So I’m stuck with a strong emotion that I don’t know how to productively channel. I’m pretty sure yelling F*** every time it happens doesn’t count. So what am I doing, what can I do about it? I’m speaking up. I’m telling my doctors what I’m experiencing, I’m blogging and telling you about it. I’m telling my Medtronic trainer. I’m telling anyone who asks me about the pump and is considering switching themselves. If improvements are going to be made, the company needs to know what’s not working. If people are going to switch to this pump (which I still encourage for all the benefits it does bring), I think they should be informed about the downsides too and have realistic expectations.

And until improvements are made, I’ll deal with my anger. And be thankful that I work from home when that involuntary “F***!” sneaks out after another sensor fails.

The Fighting Kale

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There are a lot of words that I could use to describe myself, but gardener is not one of them. In fact, I often joke that I have a black thumb, killing even the hardiest of plants. My boyfriend on the other hand, loves to garden. When I managed to nearly kill a succulent, he nursed it back to health. When he talks about his plants that he grew in containers on his balcony and the vegetables that he harvested, his face lights up. You can tell it’s something that he’s passionate about. So when he suggested that I try to grow some vegetables on my apartment balcony with his guidance, I figured I’d give it a try.

DDDC4FF2-A5D5-439B-82DC-845CF497CFD3We planted 2 kale plants, one beet plant and some chives. I’ll admit, it was pretty amazing to see the transformation of the plants in just a few weeks time. My garden consultant would examine the plants and tell me when to water and how much, helped spray the plants with organic pesticides and just generally kept an eye on how things were going.

It became a ritual each morning to check on the kale plants and report back the progress. Everything seemed to going well until random holes started to appear on the leaves. At first I couldn’t tell what was causing it, but then we found the culprits: baby cabbage worms.

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Get off, worms!

My boyfriend picked them off and we sprayed the leaves again. I thought that was the end of it. We went out of town for a long weekend and returned to devastation. The poor kale plant was almost completely devoured by the now rather large and plump worms.

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At least someone’s enjoying them

It was a sad sight. The worms had won. I’ll admit that I pretty much gave up on my kale plants. It was a good first attempt at gardening, my black thumb prevailing in the end. My boyfriend cut off the mostly eaten leaves, leaving the middle stem, hoping for the best.

And guess what?! Those darn kale plants are fighters! They’re growing giant, strong leaves, with more leaves constantly starting. I look at the plant and I can’t believekale5 it’s the same one that I had practically written-off as a failure. I’m sorry I doubted you, kale. You survived the worm invasion and came out even bigger and stronger than before.

So why am I telling you about my gardening adventures on my blog about diabetes? I’ve been having a really difficult and frustrating time with my pump and CGM the past 3-4 months, which has resulted in poor blood sugars, bad moods, and a lot of frustration and even tears. I haven’t blogged in awhile because I didn’t want my blog to turn into a place of negativity and complaining.

While sitting outside working today, admiring the recovery of my kale plants, I realized that I am in the midst of my own worm invasion. (Metaphorically. Don’t worry, I don’t have worms). Things are hard right now. I feel my mental and emotional resources depleting. It’s sometimes hard to stay optimistic. But I, like my kale plants, am a fighter. And I too hope that in time, I’ll be even stronger and healthier than I am now. I wrongly doubted my kale plants, I won’t make the same mistake with myself.

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Diaversary, henna, and pre-bolusing

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Today is my diaversary. Today marks 17 years since my diagnosis. Seventeen years since I went in for my 12 year check-up, symptom free, seemingly healthy, and got the news that would forever change my life. I remember my diagnosis, the flood of information and emotions. I also remember the doctors saying, they’ll probably have a cure in 10-15 years from now. Seventeen years later, there is no cure. But there have been many improvements in the management of type 1 diabetes.

In my 17th year with diabetes, I am eagerly awaiting the most advanced insulin pump to date. It has the ability to self-adjust insulin automatically based on your blood sugar number, a feature that has the potential to be incredibly helpful to keep blood sugars in range. It’s not a cure, but it’s a big step forward towards a completely closed loop system.

But there have definitely been hurdles and setbacks on the way. And while talking to a diabetes educator about this new insulin pump, I found out a crucial piece of information about how the auto basal feature works. She said, in order for that new feature to work, you have to pre-bolus for your meals. That means giving your insulin 10-15 minutes before you eat. Otherwise, your blood sugar could rise too rapidly and the pump will kick you out of that feature. For most people, this probably isn’t a big deal, after all, you’re always supposed to be pre-bolusing your meals ideally. But for me, it’s been 17 years of NOT pre-bolusing.

So I here I am, with a few weeks to break a habit that is 17 years in the making. It’s not that I don’t bolus, I usually end up giving it half way through a meal or after I finish. But I’ve waited so long for this pump, I want to be able to successfully use the new feature. So how do you make yourself remember to do something? Well, I’ve been trying a few things.

  1. I’ve been telling people around me to remind me to prebolus. I want the help, I want people to bug me. I need the reminders. However, I’m finding that most people I’m with also forget so it hasn’t been that helpful.
  2. My mom tried to get me to associate eating with a small meditation or thanks before I eat and then associate that with bolusing. It’s a great idea, except it’s just another thing to remember, so that hasn’t been working either.
  3. Someone suggested setting an alarm. I do use alarms, however, I don’t eat at consistent times always so the alarm wouldn’t be helpful.

hennaI was stumped. Until about a week ago. I was at an art fair with my family and there was a booth with 2 women doing henna tattoos. I love the intricacy of the designs and got one on my arm. Henna tattoos can last anywhere from 1-2 weeks. I loved looking at it on my arm throughout the day. And that’s when it hit me! What about a visual reminder to prebolus? What if I write it with henna on my hand, so then I’ll see it when I’m about to eat and remember to give insulin?

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So that’s exactly what I did. I had my sister write “BOLUS” on the thumb of my dominant hand in henna. You definitely can’t miss it, I’ve even had strangers ask me what bolus means. Is it working? Ehh, kind of! About half the time I remember to prebolus, and the other half, I’ve at least remembered halfway through a meal and not after I’m done. Small steps. And the more I do it, I know it will eventually become a habit.

Seventeen years later and I’m writing words on my hand so I don’t forget. Yes, I wrote 17 not 70, although maybe this will be a trick I take into my old age 😉

 

Fictional thriller meets T1D

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Although it sometimes feels like it, my life does not in fact revolve around my diabetes. Like I’ve always said, it’s part of who I am,  but it does not define me. There’s so much more to me and my life. I feel like often when type 1 diabetes is depicted on TV shows, movies, or in books, diabetes is either there to get a laugh or is central to the plot of the story. It’s rare to find a character who has type 1 diabetes, but there’s more to their story.

That’s why I was so excited to read, The Freedom Broker by K.J. Howe. I was contacted by the author’s team and sent a copy. The book is a fictional thriller about Thea Paris, a kidnap and ransom specialist. Her job sends her and her black-ops team on highly sensitive rescue missions to political hot spots around the world. When her own father, an oil magnate is kidnapped, she throws herself in the most urgent and challenging rescue mission of her life. Exciting right? And Thea has type 1 diabetes! The author’s own grandfather had type 1 diabetes, and watching him manage his diabetes is what inspired her to have her main character have diabetes too.

What I enjoyed most about this book is how Thea’s diabetes was depicted. This badass woman would be about to helicopter into a dangerous location to attempt to rescue a hostage and would first check her blood sugar levels on her smartphone to make sure her numbers were in range. Her diabetes was part of the story, but it wasn’t central to it. And I was really impressed with the accuracy of the portrayal of her diabetes. Hyped up on all the adrenaline from a mission, I found myself thinking, “her blood sugar would for sure go high!”, and sure enough, they acknowledged that it was. And when a downed plane explodes and leaves them stranded in a dessert, both my thought and Thea’s was how she needed to get more insulin since she was only equipped with 2 days worth and a couple protein bars stashed in her pockets. Which brings up another point that this book covered really well, always being prepared.

I was definitely interested to find out who the kidnapper was and what their motive was. But more than that, it was a nice change to read a story about a strong female who doesn’t let her diabetes slow her down. Even if it is a fictional story, that message is still powerful, relatable, and true.

DBlog Week 2017 Day 2- The Cost of Chronic Illness

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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?

All I can write for this topic is how fortunate and grateful I am that I have insurance that is willing to cover the supplies that I need and that I have a job that let’s me afford the high deductibles that I pay every year. Between the sensors, test strips, insulin, infusion sets and tubing, doctor visits, fruit snacks to treat the lows, diabetes costs thousands of dollars a year, even with good insurance.

It breaks my heart every time I hear that someone doesn’t have a CGM because their insurance won’t cover it and it’s too expensive. Or the horror stories of people not being able to afford the insulin they need to live. The devices and medication that we need to care for ourselves and stay alive should be accessible and affordable for all. End of story.

 

DBlog Week 2017 Day 1- Diabetes and the Unexpected

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Diabetes Blog Week

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?

You’ll never be 100% prepared for what the diabetic life will throw at you, but you can definitely try. Here are 3 tips that have served me well thus far.

Fill every pocket.

Maybe not literally, but no matter where I go, I always have the essentials with me. And depending on how far I’m going, and how long I’ll be gone, I fall into different categories of what I take with me. Let’s use a visual:

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That’s me in the middle there and everything in that purple circle are things that I always have on me, no matter if I am just stepping outside to throw away the trash. Since my pump is literally connected to me and my CGM is built into the pump, they’re always with me. I have a medical alert tag attached to my watch that I never take off, and I always make sure I have at least one pack of fruit snacks with me at all times in case I have to treat a low.

The second blue circle are things that are with me about 90% of the time in my purse or some other kind of small bag. Even though I might have my purse in another room for example, these items are always close by.

The third circle are items that I’d have with me either in a bigger bag like a backpack, or overnight bag, or stored in my car. They’re items that I probably won’t need on a daily basis, but I want to have with me as emergency back-up, especially if I’m going to be gone for awhile. I wouldn’t take them with me to run errands, but I would have them in a bag if I’m going on a half day kayaking trip for example.

When you’re prepared with the essentials, you’ll be more likely to handle the unexpected.

Use your support system.

Hopefully you have people in your life who love and care about you and are there to help you out in a pinch. I don’t like to rely on other people too much, but it’s good to know I can count on them if I need to. Just the other day, my blood sugar was running extra high and not coming down and I had to excuse myself from a social gathering. My friends immediately asked if I needed a ride home and if there was anything they could do or that I needed. And sometimes I end up taking them up on it. I was once driving a car full of friends to an event when my pump gave me an alert that the battery was going to die in 30 minutes and the pump would shut off. I was 30 minutes from home and 30 minutes to my destination. Luckily a friend who was meeting us offered to bring a few batteries. While I know I could have stopped at a gas station, her generosity saved us time and hassle. When you aren’t prepared for the unexpected, don’t be afraid to let others help you overcome the challenge.

Get creative.

With every pocket filled, you still might not have what you need in a specific situation. That’s when you start problem solving and get creative. I once realized I forgot to pack both my pump clip and leg strap pump holder while wearing a summer dress. Using a rubber band and hair tie, I somehow managed to secure my pump under my dress. Or while on vacation, I realized I didn’t bring extra tape for the sensor that was about to peel off. I found a first aid kit and used the band aids to hold it in place. Sometimes, you just need to think out of the box when the unexpected strikes.

Lessons from Levi

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My foster dog Levi and I spend a lot of time together. Since I work from home, he’s constantly curled up next to me, usually sleeping while I’m working. They say that owners and their pets sometimes start to resemble one another over time. I’d definitely say that’s been true of Levi and I.

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There’s a lot we can learn from our pets. In fact, I found a great list on Huffington Post of what dogs can teach us about what matters most. They remind us to live in the moment, to not hold grudges, to be loyal and dependable, and to love unconditionally.

Yesterday though, I found myself imitating Levi in a completely different way.

It was after my bootcamp class. My blood sugar was on the rise, but this was to be expected since this particular fitness class always seems to raise my blood sugar an hour later. Anticipating this rise, I had given a few units of insulin once class ended. I ate dinner, giving another bolus. But it was as if I was delivering water instead of insulin, it wasn’t doing anything to stop my rapidly rising blood sugar! By 9:30 pm I found myself staring at a staggeringly high number, the highest I’ve seen in a very very long time. I changed my infusion set and gave a correction through an injection.

At this point in the night, I was feeling truly miserable. I was thirsty, nauseous, my body and head ached, my brain felt foggy. But it was the end of the night and I had to take Levi out before bed.

LeviDance.gifThat’s when I realized that Levi was doing exactly what I needed to be doing! Tonight, I would channel my inner dog and follow Levi’s example.

Excited to be outside, Levi started pulling me to walk faster. Alright I got it, we’ll pick up the pace! Exercise, including walking, can be beneficial in lowering blood sugar. Great thinking, Levi.

While on our walk, Levi kept stopping to sniff and pee every 10 feet. While stopping so often on a walk is annoying, frequent urination to flush out your system is important when dealing with high blood sugars or even small amounts of ketones. Smart thinking again, Levi.LeviDrink.gif

When Levi finally finished emptying his bladder and marking every pole we passed, we went back inside. Levi made a dash straight for his water dish, lapping up the entire bowl. Drinking lots of water! This can help the kidneys flush out the extra glucose in the blood. Great and important advice, Levi!

I checked my blood sugar again, finally it was coming down! The rapidly dropping arrows confirmed that I was trending in the right direction and I was starting to feel a little bit better.

With the worst behind me, I followed Levi’s lead one last time that night.

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By 12:30 am, my blood sugar was back to normal. Thanks for all the lessons, Levi!

 

Foster dog and self-care

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My family is a dog family. My whole life, we’ve always had a pet dog, the same breed actually- a soft coated wheaten terrier. But with a family pet, the responsibility was shared amongst everyone in the family, often mostly falling on my parents. Besides family vacations, you could always count on at least one person being around to take care of the dog. The care of a family dog rarely rested solely on one person.

Working full time at home, I thought it would be a perfect opportunity to become a foster home for a dog. Basically I would be giving a dog a much needed break from the often stressful shelter, and in exchange, he would keep me company.

So this is Levi. And he’s been great! But this is the first time in my life that another living being is fully dependent on me and my care of him. He’s not a family pet, he’s solely my responsibility. And while he’s pretty low maintenance and independent and is still a dog and not a human baby for example, taking care of Levi has made me more aware of taking care of my own needs and my diabetes.

If you’ve ever been on a plane, you know that if in an emergency, you secure your own oxygen mask before assisting others, including children. When you’ve constantly put the needs of your children before your own, this may at first seem like a selfish act, but the truth is, you can’t be there for others if you don’t take care of yourself first.

So here’s the situation. Levi is anxious to get outside, it’s clear that he needs to go to the bathroom. I live upstairs so to take him out means bundling up for the cold, putting on the leash, and walking around the apartment complex until hes done his business. Sometimes this is a quick process, other times not so much. Levi is making his needs very clear and as his caretaker, he’s dependent on me. But at this exact moment, my blood sugar is crashing. I’m shaking, lightheaded, feeling weak. I quickly take some fruit snacks, but they still take 10-15 minutes to work before I feel better. Do I make Levi wait?

This situation is new to me. But I know it will be common place in my future when I have kids of my own. As a parent, you often put your children’s needs before your own. But as caring for Levi is showing me, sometimes you have to put your oxygen mask on first. So I made Levi wait until I felt well enough to walk outside with him. After all, how can I care for him if I pass out from low blood sugar?

Self-care isn’t selfish. This phrase first struck me because although I completely agree, I realized that we are often made to feel guilty for taking the time to take care of ourselves. It can be seen as indulgent or a luxury. But self-care is essential. When you don’t take the time to care for yourself and your own needs, what you do give to others is less than your best. You run on empty, emotionally and physically. When you take care of yourself, you are better able to take care of others.

As I write this post on #SelfCareSunday in the second week of January, a time when New Year’s resolutions are fresh in people’s minds, I encourage you to think about your own self-care, and what you can do for yourself that will in turn, help you better serve others.

I wish I had told you

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Last weekend I traveled to Chicago with about 20 other people to volunteer with an organization called Project S.N.A.P at the JDRF walks. I’ve been volunteering with Project S.N.A.P at this walk for around 5 years at the same location in Palos Hills. I’ve talked about what Project S.N.A.P does in other posts so instead I want to focus on something that I observed this year. The people.

img_2755There were more of them! This year was probably the biggest crowd of people at the walk I’ve seen in years. It was a nice day, a little cloudy but warm for October so that always helps. I have mixed feelings about the event being bigger. If it was bigger because more support people, more friends and family members came together to support JDRF and their person with diabetes, then I love that the event is growing! But if it’s getting bigger because more people are being diagnosed with type 1 diabetes, well, then that just makes me sad.

At this walk, there was a special tent for newly diagnosed families where the T1D person and their family members were given blue bandanas to wear. This made it pretty easy to tell if there were newly diagnosed people at the walk. I scanned the crowd, and sure enough I found a handful of blue bandanas.

This event can be emotional. You can hear it in the voices of the parents when their eyes fill with tears as they talk about their son or daughter they’re fundraising for and the hope for a cure. When I see newly diagnosed kids and their families, I just want to go up and give them a big hug. Tell them that everything will be okay.

I recently gave a guest talk in an undergraduate psychology class during their unit on stress and chronic conditions. I talked all about the relationship between type 1 diabetes and stress. When I got finished with my talk, I opened it up for questions. The students asked a lot of thoughtful questions. One student asked, “If you could go back in time, what would you tell your 12 year old self?” (12 was the age that I was diagnosed at).

I would tell my 12 year old self the same thing that I wish I could have told all the newly diagnosed kids and their families. I would tell them, don’t ever let your diabetes hold you back from doing something you want to do. You can find a way. I would tell myself how I was able to study abroad for 6 months, to travel the world, to jump out of a plane and snorkel in the Great Barrier Reef. I would tell them that you are not defined by a number. That there will be a lot of numbers in your future, blood sugar numbers, A1c numbers, and those numbers can be frustrating and discouraging, but you are so much more than those numbers! And finally I would tell them that having diabetes sucks, but that you will be a stronger person because of it.

I didn’t get to say all of this to those newly diagnosed at the walk, but I’m saying it now. And hopefully, they or anyone else newly diagnosed will not only read this, but believe it.

 

Disconnected

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I stared at my CGM, the screen reflecting my own feelings lately. ??? The 3 question marks indicating that the receiver can’t establish a reading from the sensor, that it’s confused, lost…disconnected.

The week leading up to an endo appointment has become a time of reflection. I’m forced to look back on the past 3 months and evaluate how I feel I’ve done with managing my diabetes. At my appointment, my A1c number will give objective evidence to these months, but for now, it’s my own subjective assessment.

I don’t need to see my A1c number to know that the past 3 months have not been great. I see my glucose numbers each day, each hour, each minute. I can’t escape the numbers. But the feeling that I have is hard to describe. Unmotivated? Stuck? Apathetic? No it’s not quite that. It’s more…disconnected.

How do I become disconnected from a chronic disease that I literally think about constantly? From the medical devices that are physically connected to be 24/7? I’m not quite sure. Perhaps it’s just day after day, going through the motions, hoping for different outcomes, disappointed when it’s more of the same.

Maybe I’m burnt out. Maybe I have lost some motivation. Maybe I’m just tired. But after years of going to each appointment with the same goal and continuously falling short, something has to change.

But change takes work and it’s hard. Maybe it’s changing what I eat to avoid blood sugar spikes. But I love food, I don’t want to change. Maybe it’s being better about carb counting and bolusing on time, but I’ve tried, how is this time going to be different? Maybe it’s asking about the use of drugs for type 2 that have been shown to help type 1s, but I’m nervous about the side effects and using drugs that haven’t been well studied for type 1s. But most of all, maybe I’m afraid of failing. Because what if I try, like really try, and I still find myself in this same spot 3 months from now? What does that mean for my future? What does it mean when I’m ready to start a family and need to get my A1c much lower than where it is now? What if I can’t do it?

I know that I can’t let fear hold me back, I know that I can’t be afraid to try. And that “failing” isn’t really failing at all, it is just a lesson on what will work for me and what won’t, all ultimately getting me closer to my goal.

Hopefully my endo can help me rebuild these connections and face my fears. All I know is that I won’t succeed unless I’m willing to try.