The pain is worth it

I listened to the voicemail while sitting at a college basketball game, trying to make out the words over the roar of the crowd. It was the local humane society calling about my foster dog. I had to take him back to the shelter for a couple days and was supposed to pick him up this afternoon.

“….potential adopters….looking at Ragnarok….call later with an update.”

rockycuddleRocky might be adopted. This had happened once before with my first foster dog who I had for 4 months before he was adopted. The mixed feelings were not unexpected, but I could feel my heart sink a little while simultaneously feeling excited that Rocky may be adopted. After over 4 weeks together, it was inevitable that we had formed a special bond. I had learned to love his quirks and enjoyed his company, I was looking forward to seeing him after our few days apart. But I reminded myself that as a foster, the goal is for him to be adopted. I had done my part. For various reasons, I knew I wasn’t going to adopt him, this was the best possible outcome.

rockyoutsideThe second call came at the end of the game. They were going to adopt him, he had found his forever home! I was so elated for him, but I knew I would miss him. That evening, I cried as my boyfriend and I reminisced about what a great dog Rocky is and the good times we had together. “This is hard.” It was true. It’s hard to say goodbye to an animal that has found a place in your heart. Why did I keep doing this? Why did I keep fostering dogs knowing that when they get adopted, the happiness would also be accompanied by a little bit of heartbreak?

Was the pain I was putting myself through really worth it? I thought about this. This is not the first time I’ve been in this type of situation. I live in a very transient college town, every year for the past 3-4 years, I’ve had a handful of close friends move away. They graduated their masters or PhD programs, or got residencies, fellowships, or jobs in other cities. Every year it was hard to say goodbye, but the friendship we shared for the few years they were here was and is still worth it. Knowing these people would leave in 1-4 years didn’t ever stop me from befriending them. The pain of saying goodbye was worth it.

I would even go as far as to say that I go through a lot of pain with my diabetes. The physical pain of being pricked and poked constantly with needles, of dealing with the physical symptoms of high and low blood sugars, the emotional pain of difficult days and the relentless effort it takes to manage type 1 diabetes. But I go through this pain so that I can be healthy. The pain of my self-management is worth it.

And so it is with fostering. I love knowing that I’m helping a dog by giving them a break from the crowded, noisy, overwhelming shelter. I love knowing that I’m helping a dog become more adoptable by working with them in areas they might need some more training. I love the companionship they give me while I work from home and the smile they put on my face when we’re playing or snuggling together. And I love knowing that they end up in a loving home. So while it’s sad to say goodbye after the time we spend together, the pain is worth it.

670G: a poem

The dust has settled.

Emotions have leveled.

Medtronic 670G,

You are now a part of me.

Over 4 months we’ve been together,

Your storms I’ve learned to weather.

To use your sensor I did try,

But frustrations piled high.

So many alarms I would hear,

The constant buzzing in my ear.

Less than a week and sensors would fail,

Every time, I let out a disappointed wail.

Eventually I learned some tricks,

Sleepless nights they worked to fix.

Auto mode is not perfection,

Blood sugars in both directions.

But at the endo there was good news,

A half point down my A1c did lose.

While sometimes I find myself in a bit of a slump,

In the end I’m so thankful for this insulin pump.

 

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My blog turns 5!

IMG_8097What better day to celebrate 5 years since I started writing my blog than on Giving Tuesday?! While a lot has happened in the last 5 years for type 1 diabetes management, there is still a long way to go to get as close to a cure as possible. And today, if you donate to JDRF, your match will be tripled! Talk about a great way to celebrate this milestone!

Here’s a look back on some of my 5 favorite posts from the past 5 years. Obviously it was hard to pick just 5! Enjoy!

  1. These spooky diabetes moments from this year’s Halloween, October 2017
  2. A scary situation, told using Bitmojis, June 2016
  3. Diabetes Blog Week- I can, May 2015
  4. CGM, go to bed. An ode to my continuous glucose monitor, May 2014
  5. Why me?!, December 2012

Runner ups:

My 670G Tips and Tricks

It’s been about 2.5 months with my 670G pump. I’ve never had such an intense love/hate relationship with a medical device before. When asked if I’d recommend the pump or how I feel about, my honest answer is that I have very mixed feelings about it. And I think the most important takeaway is to have realistic expectations if you decide to get this pump. It is far far from perfect, but it has incredible potential. However, there are many and frequent frustrations, and for me, the pump was not only affecting my sleep (which obviously has implications for all areas of your life), it was also affecting my mood.

One thing I’ve learned over the past 17 years living with a chronic disease is that you have to make it fit into your lifestyle, not the other way around. That doesn’t mean you don’t make changes to the way you live, but it also means that to get through each and every day, you find ways to fit diabetes into the life you want to live. I have a few diabetes mantras, and one of them is “Diabetes does not define you.” My health and safety is always my first priority, but within the confines of this pump, I’ve found some tricks to get me through each day so that the pump is not negatively affecting my mood and sleep.

I’ll stop right here and say that what I’m about to tell you is not the way that the pump was designed and intended to work, so if you choose to try any of the tricks below, you do so at your own risk. I’m not recommending these for everyone, obviously you know what is realistic or not for your own life and circumstances. But this blog is for sharing my personal experiences so that’s what I’m doing.

My 670G Tips and Tricks

1.Be very careful about when you calibrate. Medtronic seems to have a lot of advice about this, don’t calibrate when you’re rising or dropping, don’t calibrate when there’s active insulin, calibrate about 4 times a day. I’ve also found that since I’m a stomach/side sleeper, I try not to calibrate when I first wake up even if it’s asking for one. I give it 30 minutes to an hour for the sensor to even back out. When I get into the cycle that says “Wait to enter BG” sometimes it helps to wait more than the 15 minutes, up to an hour even before entering the next BG.

2. Learn your sensor’s patterns. The sensor is supposed to last 7 days, however this has rarely been my experience. Here’s what my sensor timeline typically looks like:

  • Day 1: sensor is getting used to my body and usually isn’t very accurate for the first 24 hours.
  • Day 2-4: Sensor typically works pretty well, calibrations last close to 12 hours.
  • Day 5: Things start going downhill, either it will say change sensor or will need much more frequent calibrations.
  • Day 6-7: Hah

3. Adapt your manual and auto mode use to your sensor’s patterns. I’ve found that when the sensor is in auto mode, it requires many more calibrations, and that it is much quicker to not accept a calibration and eventually tell you to change a sensor than if it’s in manual mode. This makes sense. Since it’s giving insulin in auto mode, it wants to make sure it’s as safe and accurate as possible. However, if you want your sensor to get the full 7 days (or as close as you can), you can sometimes stretch the use by staying in manual mode for the last couple days. Here’s how it works:

  • Day 1: I keep it in manual mode for most of the day until the sensor is reading pretty close to my finger readings.
  • Day 2-4: Auto mode
  • Day 5: This is often where I get to the point that it tells me to change sensors. So now instead of cursing and getting mad, I disconnect the sensor from my body and charge it while turning off the sensor on my pump. Then I reconnect the sensor and “trick” the pump, telling it that it’s a new sensor. I then go through the warm-up period. For me, this works about half the time. If the sensor has gotten bent, then this trick won’t work, you’ll still end up changing it.
  • Day 6-7: Manual mode

4. If you feel comfortable, alert silences can be a great thing. I always calibrate my sensor right before bed, hoping it will last the 12 hours. However, if you’re close to day 5 and beyond, the sensor will often ask for a calibration 6 hours later, which for me is around 4 or 5 am. I was waking so frequently that my body started automatically waking up at 5 am every morning, and I would have trouble falling back asleep. So now, I make a judgment call each night. If I feel pretty sure that my blood sugar isn’t fluctuating too much, I sometimes choose to silence all alerts for the night. This way it won’t wake me up if it needs a calibration. I did find that it does still vibrate for low blood sugars. The pros: an undisturbed night of sleep. The cons: if it does need a calibration during the night, you won’t have any readings and if you’re in auto mode, it probably will eventually kick you out. So ultimately this comes down to what you’re personally comfortable with. I don’t silence the alerts every night, more so for the nights I just really want an undisturbed night. And I’ve always been able to feel my lows during the night so I don’t rely as heavily on the pump alerts. Then if I wake up at 4 or 5 in the morning, I’ll often calibrate anyway. But at least then it’s my body waking me up, and not my pump.

Everyone’s needs and experiences are different. My “tricks” might not work for you or fit your lifestyle or may not be how you want to be using the pump. But maybe they do help. Either way, I’m all about sharing and learning from one another.

Spooky Diabetes Moments

It’s Halloween! A day of spooky, scary fun! In honor of Halloween, here’s a list of spooky and slightly scary diabetes moments!

Phantom Buzzing. You feel your pump vibrate, but when you check to see what caused it, there’s no explanation and it didn’t actually vibrate. Spoooooky.

The Dead Zone. When you ignore the first signs of a low battery and then all the sudden your pump shuts down. Quick, where are those extra batteries?!

The Demon Drop. When your blood sugar is dropping super rapidly. Think triple arrows down! Ahhhh!

The Ghosting Glucose. When you think you have something with you to treat your low, but then you check all your pockets and they’ve somehow disappeared!

The Vampire Bite. That sharp pain you sometimes get when you insert your infusion set or sensor. Ouch!

The Morning Zombie. How you feel after a night of constantly being woken up from alarming pumps or CGMs for high or low blood sugars or calibrations. I just want to sleeeeeep.

The Witch’s Spell. Forget eye of newt and toe of frog. You want a complicated spell? Try a calculating a dual bolus for pizza with a high blood sugar trending down and active insulin on board.

The Mummy Wrap. When you poke your finger to check your blood sugar and it just won’t stop bleeding so you wrap a tissue around it a few times to stop the blood.

The Dagger Spike. That sudden sharp spike in your blood sugar, the one that keeps rising even though you bolused and gave insulin. Please come down already!

Happy Halloween everyone!

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Sensors and Censors

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.

Why I love fall

There is so much I love about fall.

IMG_2924I love the colors of the changing leaves.

I love fall fashion- warm sweaters, boots, and scarves.

I love apple picking and eating cider mill donuts.

I love pumpkins. Carving them, decorating with them, eating pumpkin flavored foods and smelling pumpkin spice.

I love the crisp air, walking with the sound of leaves crunching under your feet.

I love college football games and tailgates.

And I love all the increased pocket storage space!

IMG_2932It may not seem like a big deal, but in the summer without jackets, you’re limited to the pocket space that is in your pants or shorts, assuming that they even have pockets! It seems like summer clothing are more often opting for tiny pockets or none at all. Contrast that to fall. Colder weather means sweaters, sweatshirts and jackets, which means so much more room with all the pockets. It makes a difference when you’re going for a run and need somewhere to hold your snacks for low blood sugar and glucose meter and keys. It matters when you go to a collage football game that won’t let you take in a purse so you borrow the pockets of the people you’re with so you can fit all your supplies. It matters when you’re out for a walk and just don’t want to carry your heavy purse and only want the essentials with you.

So heres to pumpkin pies and pockets!

An update on the 670G pump

It’s been 3 weeks since I started on my new Medtronic 670G insulin pump, 21 days since that life changing day I wrote about. So you’re probably wondering if it’s as great as it seemed to be after those first 2 hours. Honestly, no, it hasn’t been as smooth and hassle free as I had hoped. But after 3 weeks, I can definitely say it’s made an improvement to my life and my blood sugars and I’m so glad I made the switch.

Let’s start at the beginning. About 3 hours after posting how great the pump is, it kicked me out of the auto mode and I got stuck in an endless loop of it asking me for a blood sugar to calibrate, calibrating, asking for another blood sugar, processing, and then saying to wait. This went on for hours. Finally I called the medtronic helpline and spent an hour on the phone with a support person. After the hour, he still couldn’t fix it and I ended up having to take out the sensor which was working fine. It was a frustrating start.

After putting in a new sensor, things seemed to be going better for awhile. I was able to get back in the auto mode feature. My blood sugars have had way less drastic highs and lows, although I still find myself in the 200/250 range and the auto basal doesn’t seem to do much to bring it down. I’ve also had fewer lows especially those that are a result of correcting for the high spikes.

The alarms are a bit annoying, I find that even if I calibrate before bed, it still might need a calibration in the middle of the night, and I get awoken by the buzzing. I find that most often when I do get kicked out of auto mode, it happens during the night. I’ve also gotten stuck in that same loop of repeatedly asking for a blood sugar and not getting back into auto mode for a few hours a few more times. But luckily I haven’t had to take out any other sensors.

I had my 3 month endo appointment yesterday, and even after only having the new pump for 3 weeks, my A1c dropped half a point, so obviously it’s helping. I’m optimistic that the number will be even lower at my next appointment.

Is the pump perfect? No. There are a number of annoying features and issues that happen. But that comes with being an early adopter of a new technology. Am I glad I went through all the waiting and headache to switch? Hell yea! Even with its issues, I can see the positive effect this pump is having. And some of it is still user error. I’m sure my numbers would be even better if I remembered 100% of the time to prebolus my meals and improve other habits.

As someone reminded me, it’s not a magic pill (or pump) that’s going to suddenly make every blood sugar perfect. It’s still a piece of technology that has made advancements, but still requires effort on my end too. With that in mind, I’m eager to see what happens in the next 3 months.

 

 

Relationships, intimacy, and sex…with diabetes

A couple months ago, I was contacted by someone from Diabetes Forecast magazine, part of the American Diabetes Association, asking if I would be willing to answer a few questions about dating, relationships, intimacy, and sex with diabetes for an upcoming article. I gave this request a lot of consideration, since these are sensitive topics that I have tended to steer away from on my blog. Ultimately, these are important, real life issues that people with diabetes wonder about, but are rarely talked about. I decided that I have a perspective that is worth sharing and I hope that it will help others who may have questions or concerns related to these topics.

The article “Sex and Diabetes” in Diabetes Forecast does a really good job of talking to a diverse group of people with both type 1 and type 2 diabetes, and sharing their varied experiences. It combines their stories with important and relevant information from medical professionals. I highly recommend you read it. I have 2 quotes in the article, which were part of a much longer interview. I have decided to post the full interview below.

 

How and when do you reveal that you have diabetes to a partner or potential partner?

My diabetes is a big part of my life, and it’s important that I’m with someone who is understanding and supportive. If they’re not, I’d want to know upfront before things get too serious. I usually tell someone I have diabetes on the first or second date. I’ve always found ways to naturally bring it up in conversation. For example, when discussing hobbies or interests, I talk about my blogging. Since my blog is about living with type 1 diabetes, it has become a perfect opportunity to approach the subject.

How big of a deal did or do you make it?

My diabetes is always there; I’m always thinking about it and managing it. But I’m so much more than my diabetes, it’s just one small part of who I am and part of the package. Although not quite the same, I relate it to someone telling me they’re gluten free or they have a cat (I’m allergic). It’s part of who they are and if you choose to date them, you’re accepting what that person brings to the relationship. For me, it’s a chronic condition. But I’ve also been managing my diabetes for many years now. I’m not looking for a doctor or someone to fine tune the intricate details of managing my diabetes. I’m looking for someone who will be there with me through the ups and downs.

How much of your diabetes do you reveal to them?

I’m very open about my diabetes, especially with blogging about it. I enjoy talking and educating people about type 1 diabetes. So in the beginning of dating or a relationship, it’s mostly the basics: what is type 1 diabetes, how long have I had it, and the what it means to manage it. I’m always willing to answer questions. It shows me the person is engaged and eager to learn, which I appreciate. Over time as I get to know someone and feel more comfortable, I open up more about the emotional and personal aspects of living with type 1 diabetes.

How can you be open and honest, while still keeping personal any health issues that you don’t feel comfortable sharing?

Open communication is important in any relationship. It’s up to you how much you feel comfortable sharing, when, and with whom. And the other person should understand and respect your decision to share or not. I’ve said things like, “I’ll tell you more about that later” or “I don’t really want to talk about that right now.” Ideally, you’re with a person who eventually you do feel comfortable sharing things with, but you should never feel pressured to do so until you feel ready.

Has talking about your diabetes ever upped the emotional intimacy in a relationship?

I think talking about diabetes can have the potential to up the emotional intimacy in a relationship, but it probably depends on the person. You are talking about a personal health issue and if you’re someone who keeps things to themselves, sharing this can be a big deal. For me, talking about my diabetes and what it means for my future, like pregnancy or fears of complications, have led to more intimate and serious conversations. But these are also important conversations that I’m glad I had that brought up non-diabetes related topics as well.

Do you wear a pump?

Yes

Do you take it off during sex?

I don’t have any hard and fast rules. The CGM is very useful, I’ll definitely check my blood sugar on my CGM before disconnecting. If I feel like my blood sugar is in a good place that I can disconnect for a little while, I will. But if not, I’ll keep it connected and just try to keep my pump out of the way. If my blood sugar is dropping or relatively low, I might take a few fruit snacks to avoid the disruption of a low later. But mostly I just go with the flow. Yes, there may be some awkwardness, some cord tangling for example, but when you’re comfortable with the person you’re with, these things aren’t a big deal.

Do you wear a CGM?

Yes

Has the CGM ever come in handy to warn you of lows during sex?

The CGM is a great tool to see how my blood sugar is trending. It’s useful to help anticipate lows before they happen and become disruptive. I usually can feel my lows before my CGM, but the persistent, rather annoying, low alarms definitely do their job of making you stop what you’re doing so you can take care of yourself.

Do you take other precautions during sex? For instance, do you keep a stash of glucose tabs by your bedside?

I’m always prepared for a low blood sugar no matter what I’m doing, but especially if I’m doing something that has the potential to drop my blood sugar. I use fruit snacks to treat a low and basically always have them within reach if necessary. I wouldn’t say I take too many other precautions.

Do you have to plan for sex, or can it be spontaneous?

When you live with diabetes, you learn to always be prepared for anything in any situation. To me, there’s not much of a difference in terms of my diabetes between a spontaneous bike ride or sex. In either situation, you need to be prepared for high or low blood sugars and everything in between.

What are some of the mental aspects of diabetes and sex?

Sometimes I feel a little guilty if we have to stop whatever we’re doing so I can treat a low and then have to wait for my blood sugar to feel normal again. Lows are disruptive, and even more annoying when you have to stop doing something you are enjoying. But I’ve also come to appreciate and enjoy the cuddling that usually happens while I wait for my blood sugar to rise, so even challenges can have a positive aspect too.

Is body image ever a factor?

I used to be more self-conscious about my scars from all my set changes and even the infusion sets and sensor that I wear, but now I don’t really think about them. Body image is complex and something I think people struggle with whether they have diabetes or not. My scars are reminders of how strong I am and how much I overcome each day living with diabetes. The devices I wear keep me alive and healthy and make managing my diabetes easier. I have my own insecurities like everyone else, but they’re not really related to my diabetes.

A life changing day

Today is a life changing day.

No, seriously.

Today, I woke up early, drove 45 minutes to my second training for my new Medtronic 670 G insulin pump, and they turned on the auto basal feature on my pump. What does that mean? It means that this first pump of its kind now has the ability to see what my blood sugar is and every 5 minutes, all on its own, give micro amounts of insulin to make sure my blood sugar stays as close to 120 as possible. It means that if my blood sugar is going up, it will give more insulin, and if its dropping low, it will give less. ALL ON ITS OWN!!! Yes, I still give insulin when I eat or give corrections when necessary, but it is working to manage my blood sugar in the time in between so that I hopefully don’t need to be giving corrections at all.

I’ve been open about my struggles to keep my blood sugars in range, I experience a lot of roller coaster ups and downs, and while my A1c has fluctuated over the years, I’ve never been able to get it to 6.0, a goal that I work every day to achieve. I’ve experienced frustrations, burnout, sadness as well as pride and celebrations over the years, but this new pump feature has the potential to be life changing for someone like me and many others with T1D.

pump2.jpgIt has literally only been about 2 hours since I turned this feature on and I’m sitting looking at one of the straightest, steadiest, in-range blood sugar graphs and I can’t help but get emotional. I have tears falling down my cheek as I type this. I don’t know that I can communicate everything that I’m feeling right now. For some of you, maybe you can relate, and for others, I hope I can come close.

Diabetes is all consuming. You have to be thinking about it all day, every day. You can’t take a break, you can’t say, “I don’t want to deal with you right now” without facing consequences to your health. Diabetes takes so much time and energy, and some days can be so physically and mentally exhausting. It’s exhausting when your blood sugar is running high and you’re not exactly sure why, it’s exhausting when you’re exercising or out with friends and it drops low and you have to stop what you’re doing and treat it and wait to feel better. It’s exhausting just not feeling your best or being able to give your best because you feel low, or high, or just off. It’s exhausting feeling like you do so much, but don’t have the numbers to show for it.

pump1.jpgJust the idea that this pump is literally asking me to give up a lot of control, trust the sensor, and let the pump do some of the work is simultaneously terrifying and liberating. It takes away just a little of the burden of living with diabetes, but even that little bit counts for so much! And I am so grateful and excited that a pump with a feature like this finally, finally exists. The fact that I potentially won’t have as many roller coaster highs and lows is such an incredible thought that is almost too good to be true.

I’ll let you know if I feel the same way 2 weeks into wearing this pump as I do 2 hours in, but for now, I am just so thankful to finally have a piece of technology that can truly help me in a way that I haven’t experienced before. And while it’s not a cure, it’s definitely a step in the right direction.