The view from the top

Two months ago, I had an appointment with a new endocrinologist. Back with my old endo, I made the decision to try for much tighter blood sugar control. Part of that decision involved getting off auto mode, switching to the Dexcom sensor, and having more frequent visits and check-ins with my health care team.

After years of my a1c hovering around 7, I wanted it to finally make it into the 6’s. And it happened! Not only was it in the 6’s, it was in the lower half of the 6’s. I couldn’t believe it!

The downside of this being a brand new doctor is that she didn’t know me, or my struggle to bring it down over the many years. She didn’t recognize what a huge accomplishment this was for me. I had imagined this exact moment for so long, I remember thinking, would I cry of happiness? Would my doctor share my excitement? Not that she wasn’t pleased, but the conversation quickly continued. And it continued to a much heavier topic. I wanted to know more about pregnancy and type 1 diabetes because at some point, when we’re ready, I want to start a family. And I wanted to know what that journey would look like for me so I could be prepared- physically, mentally, and emotionally. As one might expect, it will be a lot of work. Constant monitoring, adjusting, and tracking to keep blood sugars in a safe range for 9 months. My feelings of triumph and accomplishment were quickly overtaken by feelings of anxiety and fear. I had accomplished my first goal, getting into the 6’s, but suddenly there was so much more ahead of me when I decide to go down this path. It was daunting.

This whole experience reminded me of an illustration by one of my favorite Instagram artists/doodlers, decade2doodles.

image

Here I was at the top of that first hilltop and instead of taking a moment to realize how far I had come, to celebrate that first victory, I was already looking ahead at how much more I needed to climb.

“When you’re scared about what’s next, find confidence in what came before.” This is what the artist had written below this post. The first time I saw this illustration, I don’t know if I even read what was below it, I related enough to the image itself. But the truth is, I look at this journey of pregnancy with type 1 diabetes and I am terrified! What if I can’t keep such strict blood sugar control? The risks with pregnancy are scary enough without adding in type 1 diabetes.

Now with another appointment next week, I’m afraid that I have taken a few steps backwards and I know my a1c will reflect that. “…find confidence in what came before.” I’m working on that confidence part. I got my a1c down to the 6’s, if I did that once, I know I’m capable of doing it again, of continuing to make improvements, and maintaining that level. And when I’m ready to climb that second part of the mountain and start a family, I know I’ll have the support of great doctors, family, and friends helping me along the way.

 

Tears of Joy

There have been many times that managing my type 1 diabetes has led to tears. I’ve cried out of pain, I’ve cried out of frustration, I’ve cried out of fear, but this is the first time I legitimately cried out of joy.

Before I get to that, let me explain what led to this point.

Two years ago, I made the decision to become an early adopter of the medtronic 670G insulin pump. At that point I had been using a Dexcom sensor with an older medtronic pump. But I was excited about the hybrid closed loop system, I thought that the ability of the pump to adjust insulin doses on its own based on blood sugar numbers could be incredibly beneficial for me. So I gave up my beloved Dexcom sensor and moved over to the medtronic Guardian sensor. This has not been a smooth road. I’ve been pretty vocal with my frustrations in my posts here and here. Two years later, it has gotten a little IMG_3370better, but not much. Sensors rarely last the 7 days, almost every time I inserted a new sensor, it would just show my blood sugar dropping even when it wasnt, eventually rejecting the calbriations and telling me to change the sensor. Every day would require multiple calibrations with misleading arrows, causing even greater roller coaster blood sugars. I admit that automode was useful, but I would only end up being in automode less than half the time. The other 50% of the time was incredibly frustrating.

Recently, I’ve started working with my doctors for much tighter blood sugar control. As part of this effort, my doctors advised me not to use automode, because the target blood sugar of automode is higher than the target they want to aim for. Since I wasn’t going to be using automode, my doctor brought up the idea of switching back to the Dexcom sensor since the pump wouldn’t be communicating with the sensor. I would be going back to a sensor that I really liked, a more accurate and longer lasting sensor that could integrate with an iPhone and apple watch, but not my insulin pump. I loved this idea, and a month later my new Dexcom G6 system arrived. I was so excited!

A lot has changed since the last Dexcom system I used. The inserter is now an automatic inserter, the handheld device is now a touchscreen device of a different shape, and like I mentioned before, it can integrate with apple devices like a phone and watch. And more than that, it no longer requires finger stick calibrations! I took the sensor out of the box, following the directions to set it up and insert it. I pressed the button, barely feeling the needle piercing my skin. But as I pulled away the inserter, it started gushing blood, filling the piece of plastic and overflowing down my stomach. This was not good.

I called up Dexcom and explained the situation. They told me to take out the sensor, that the amount of blood could interfere with the readings. A little shaken, I waited until the next day to try again. This time, I pressed the button, but the inserter wouldn’t disengage from the plastic piece on my stomach. I kept pulling, but it wouldn’t budge. I called up Dexcom again and explained the situation. They told me to take the sensor compeltely off and we determined that the needle never retracted, so it didn’t allow the inserter to be removed. I was assured that this occassionally happens, but it wasn’t anything I did wrong, and they’d send a replacement. After two failed sensor insertions, I was starting to feel a little discouraged. Was I destined for a lifetime of sensor issues?? I chalked it up to bad luck and tried for the third time. And it worked! Third time was the charm.

After the 2-hour warm-up completed, a blood sugar reading appeared. It didn’t even need a finger prick or calibration! I was a little skeptical after all the issues I’ve had with my medtronic sensor so I tested my blood sugar from my finger. I stared down at the number in shock. It was only 1 point off from the sensor! IIMG_3461 couldn’t believe how close they were. And then I lost it, I just started crying. It was like this weight I had been carrying around for 2 years was suddenly lifted. Like I had been holding my breath and I could finally breathe. I couldn’t believe the relief I felt, I hadn’t even known it was negatively affecting me so much.

I’m only 4 days into this first new sensor, and it’s not perfect. I’ve had one time where I felt low and tested low, but the sensor didn’t reflect that. But after a quick calibration, it fixed it. But already, I can tell a HUGE improvement and difference. And the convienience of being able to just glance at my watch and see my blood sugar is amazing. Without automode, I have been experiencing more low blood sugars, but with the improved accuracy and reliability of this sensor, I find that I’m over correcting less and able to anticipate lows more accurately.

It is a little ironic to not be using the insulin pump that is the latest and greatest technology with the hybrid closed loop system, but for my goals right now and my mental wellbeing, I’m so happy with this decision to switch back to the Dexcom system. Hopefully I feel the same way in a few months, I’ll keep you updated 🙂

 

Pump, polish, and pockets

Yesterday I asked a complete stranger to pull something out of the front pocket of my jeans.

As strange as that sounds, I’m surprised it hasn’t happened sooner. It started when I pulled into the parking lot on my way to get a manicure. I checked my blood sugar. It was around 110 with an arrow pointing downward. I should have taken that arrow as a warning, but with very little active insulin, I figured it would even out and all would be fine.

It was about half way into the manicure when my pocket started to vibrate. It was my CGM alerting me to a low blood sugar. It vibrated 3 times and stopped. I sat there thinking what to do. The thing with this pump, it does not like to be ignored. It will give you three rounds of vibrating before then making an audible noise, a few short musical notes. The audible notes are a more polite way to say, please acknowledge me, you’re low. But if it continues to be ignored, as in you don’t click the appropriate buttons to clear the warning, it will go into a full blown loud alarm sound. Don’t get me wrong, this is a useful feature, especially in the middle of the night when you may sleep through the vibrating and the notes, but it is a little bit obnoxious and embarrassing when you’re in a small, quiet nail salon.

I was on to the audible notes now, knowing quite well what was coming next. I debated waiting it out, or playing it off like “yea I don’t know what that sound is” but it was clear that my nails were not close to being done and it would be pretty obvious that the loud noise was coming from me.

So at the next sound of my pump, I looked awkwardly at the nail technician and said, “Do you mind getting something out of my pocket? It’s going to start making a lot of noise.” The woman didn’t even hesitate, just leaned over and pulled it right out, which made me wonder if this type of thing happens more often than I thought, retrieving items from customers’ pockets who have wet nails. Either way, my pump was safely out of my pocket and I was able to silence the alarms. My pump said my blood sugar was 78, low enough to alarm, but knowing myself and the fact that I didn’t feel low, I knew I could wait the 10 minutes to treat it. The woman finished my manicure and I put my pump back into my pocket.

I think next manicure, I’ll keep my pump out of my pocket and on my lap…just in case.

 

 

The tape roll of time

I have a tendency to get sentimental when I finish or get to the end of certain products. I’m not talking about every time I finish a box of cereal or even a Costco size bottle of shampoo. I’m talking about items that take a significant amount of time to get through, years even.

You see, recently I got to the end of the roll of tape that I use to cover my CGM sensor on my stomach. Every time I put on a new sensor, which is about once a week, I cut a 2 x 2 inch square of tape. The roll of tape is 10 meters, or about 33 feet, or 396 inches. It took me over 3 years to get through that roll of tape! Finishing something that lengthy made me feel reflective. It’s a measurement of the passage of time. And a lot has happened in the 3 years since I first started that roll of tape.

I have a new pump and new CGM. I’ve been using my Medtronic 670G insulin pump and sensor for close to 2 years now. Back when I bought that tape, I was still using my Dexcom sensor.

I’m engaged! Actually, when I first started that roll of tape, I hadn’t even met my fiancé yet.

And my sister is engaged! 3 years ago she was living in a different state, and now she just bought a house 20 minutes away from where I live.

I live in a house now, not an apartment. I moved in with my fiancé and his cat in the the next town over. Three years ago, I never thought I would live with a cat. My allergies were so bad. It’s amazing what a year and a half of allergy shots can do.

There have been sad and hard times too in the past 3 years with the passing of my aunt and my grandpa. I treasure all the moments I got to spend with them.

With the beginning of this new roll of tape, it’s fun to imagine what my life will look like 10 meters from now. What will change in the next 3 years? Only time will tell…

 

IMG_1966

 

Freedom

I feel like my back and shoulders always hurt. There are a lot of reasons for this: my posture, the way I sleep, my workouts, sitting at a desk all day…but I’m also convinced it’s because I constantly carry around a heavy purse. I’ve always been envious of the people who can fit everything they need into a tiny bag, a small clutch, or even just their pockets. That’s never been possible for me. I never go anywhere without having a stash of fruit snacks with me in case of a low blood sugar. And then I also carry around my glucose meter. I’ve learned to always be prepared so throw in an extra bottle of test strips, a battery for the pump, a couple syringes and an insulin vial…just in case! And if I’m already carrying all of that, then I definitely have room for my wallet, keys, phone, a lip gloss…you get the idea.

I am tethered to my purse. I constantly ignore comments like “you can leave your purse, you won’t need anything.” But I might! What if I go low?

I am tethered to my pump. The cord physically connecting my body to a medical device at almost all times.

And I’m probably emotionally tethered to my phone, but that’s for another time.

Which makes the few moments of untethered freedom even more satisfying. Like taking a shower. Or going for a run.

I’m not a distance runner, the most I run is 2 or 3 miles at a time, so I made the decision to disconnect from my pump and leave my meter at home for those 30 minutes. While I still carry my fruit snacks, phone, ID and keys, this is probably the least amount of stuff I ever carry while being away from home.

I don’t know if it was the endorphins from running or the lightness of having little to carry, but recently on a run, I had a sudden euphoric moment. “I feel so free!” I thought to myself as I bounded down the sidewalk. There was no pump clipped to my pants threatening to fall off with every step, weighing down my leggings. There was no strap around my shoulders or back connected to a bag holding all my supplies, adding weight and pain to my body. It was liberating.

But then reality set in. My body started to feel shaky and weak, my head started to feel dizzy. My legs continued to propel me forward, but they felt numb and disconnected from my body. I was experiencing a low blood sugar. It was a cruel reminder that I’m truly never free from my diabetes. I can leave my medical devices and all the supplies at home, but I can’t run away from my broken pancreas. The timing of the low right after relishing my “freedom” made me laugh at the irony of that moment, “You got me, body! That was a good one, you son of a bitch.”

Forever Valentine

Dear Forever Valentine,

You chose me. The gorgeous ring on my finger reminds me every day. Later this year, in front of our family and friends, we will forever be bound together.

You chose me. I don’t think either of us could have predicted this. We lived in the same college town for years, our paths never crossing. We lived our separate lives, with our separate friends, and separate interests. But perhaps feeling like something, someone, was missing.

You chose me. Or better yet, you swiped me. Brought together by technology, your words drew me in. Your cute, but elusive smile made me want to stay.

You chose me. With you, things felt easy. But life is not easy. Life throws you challenges, and devastating loss, and choices that cut to the core, that emphasize our differences. But with you by my side, we face each obstacle, together.

You chose me. To share your interests and passions with. To share your goals and your fears with. To start a family and grow old together.

You chose me. And you chose my diabetes. Because we are a package deal, we are intertwined so deeply- physically, mentally, emotionally. You see my diabetes, I see your worry. But you also see past it, you see me.

You chose me. And I chose you. Forever, Valentine.

vday pump

What’s the point?

Last night, I made a bag of microwave kettle corn popcorn, measured out 3 cups into a bowl, rolled up the rest of the bag, and put it away. 

I don’t think you guys realize how big of an accomplishment this was for me. I LOVE popcorn. And I don’t have a ton of willpower and discipline when it comes to cutting back on my snacking. It’s not that my snacking is out of control, but I am trying to drop a few pounds that have crept on, and the snacking and portion sizes are where I know I need to focus my efforts. 

I enjoyed every last kernel of that popcorn. But that’s when the thoughts started. You know them, the kind of thoughts that try to convince you that you really should go finish the other half of that bag. Man, are these thoughts cunning. “You had a healthy dinner, you can afford those few extra calories.” “Today was leg day, you earned that popcorn girl!” “That bag is still hot, it’s not going to be nearly as good tomorrow, you should enjoy it now.” “Oh come on, it’s not like you have dessert every night, treat yourself.”

These thoughts were persistent! But I held my ground. To make a change, I had to change. I can’t give in to these kinds of thoughts and expect to make progress. I got up and made myself a cup of tea instead. And you know what, I was really proud of myself. I know that each decision like this and small amounts of calories that I don’t eat will add up over time. 

But then it happened. A low blood sugar. And not just a small one, it was one of those crippling lows. The kind that you lay there feeling awful…and hungry. Of course this would happen tonight. So I treated the low with some fruit snacks and I waited. But the feeling wasn’t getting better and the arrows on my CGM continued to point downward. So I ate a few more fruit snacks. Eventually my blood sugar started to go back up, but that awful low feeling continued to linger. 

How do you go through that and not feel defeated, and cheated, and mad?! I turned down that half a bag of popcorn, only to have that effort completely undermined by the need to treat a low blood sugar. And this happens all the time. I’ll be honest, sometimes it’s hard not to just give up because what’s the point? So often when I’m trying to cut back, I end up having to eat those calories to treat an unexpected low blood sugar. I feel like I’m having to fight double the battles any time I want to lose weight: the normal fight of making healthy food and portion choices, but also the fight against my diabetes and how it continues to make everything more difficult. And deep down, I’m not sure I’m strong enough to overcome both. 

Between my daily inspirational calendar and the inspiring words of Autumn Calabrese during the workout program I’ve been doing, it’s hard not to internalize some of the quotes. “Nothing worth having comes easy.” “You may have to fight a battle more than once to win it.” The message is clear, you can’t give up, even when things are hard. And if I have double the battles, I just have to work twice as hard. 

I know what I have to do, now it’s just putting those words and thoughts into action…Easier said than done.

System fail

Yesterday I had a frustrating day, all because of systems and procedures that are supposed to make my life easier.

It all started at 7:43 am. I woke up to an automated email from my online pharmacy. “We shipped your order.” Well that’s great except I didn’t order anything, so what is being shipped?? I also don’t have any of my prescriptions on auto refill so this email was troubling.

I scrolled down to see if it said what prescription was being sent to me. Nope, I’m sure for security reasons they don’t provide the name of the prescription or the full number of it. Great.

I logged into my account to see what prescription was being shipped. It was my insulin. The problem is, I didn’t need any more insulin at this time, I have 9 unopened vials sitting in my fridge, this just didn’t make sense.

It wasn’t until 11:14 am that I got another automated email from the pharmacy, this time saying, “We got your request. We’re working on this prescription for you. Give us a day, and then check back any time to get the latest details.”

That’s when it hit me. I had my endo appointment on Monday and my doctor told me that she was going to send a new prescription to my pharmacy since it was out of refills. She must have sent the prescription in and then they automatically filled it. In most cases this all would have been super helpful. My doctor proactively making sure the prescription on file was up to date, the pharmacy filling a prescription that comes in. But in this case, I didn’t want any of this to be happening.

I called up the pharmacy to explain the situation. I didn’t actually need any insulin right now, my doctor was just updating the prescription. Is it possible to cancel the order? “No, I’m sorry, it looks like it already shipped.”

This is when I started to get frustrated. “Well I never approved this order, why is it being automatically filled? What am I supposed to do now?” The man explained that unless there is a specific note from the doctor not to fill the prescription, they automatically fill and ship it. Again, in 99% of cases, this makes sense and would be super convenient. My mind was spinning. Have I met my deductible, am I going to be charged for this insulin? What’s the shelf life for it? Will I be able to use all the vials before they expire?? I was annoyed. Everything that had happened up to this point was supposed to make my life easier, prescriptions being automatically filled, shipping within a day, automated email notifications, yet here I was stuck with a shipment of insulin coming too soon.

The pharmacist let me know that the insulin wouldn’t expire until the end of 2021, so I would definitely be able to use it before it expired. He set me up to receive text message alerts any time a prescription is received. And now I know to tell my doctor to make a note to not fill the prescription right away if I don’t need it in that moment. In the end, everything worked out fine. I have a fridge full of insulin and I recognize how fortunate I am to even be in this situation when there are many people in this country and in this world who don’t have access to affordable insulin.

IMG_1969

Playing the diabetes card

Having type 1 diabetes makes your life harder. That’s a fact. You have more to think about, more to do, more to calculate, and more to deal with than someone who doesn’t have type 1 diabetes. Not to say that they don’t have their own struggles, but I think we can all agree that having a chronic disease makes your life more challenging.

Despite this, I’ve often been hesitant to use this fact to my advantage when the opportunity arises. As some call it, “playing the diabetes card”. Not that it’s wrong to do that, there are definitely situations where it calls for bringing attention to the fact you have diabetes, whether it means special allowances in schools or being able to carry food into places where it isn’t allowed in case of lows. I’m all for that. In fact, I recently went to a music festival and emailed ahead of time to make sure I’d be able to get my fruit snacks in despite the “no outside food” policy. When it’s an issue of safety, I’m not afraid to speak up. But other times, I tend to keep quiet.

A number of years ago, my friend and I decided to go to NYC’s Times Square for New Year’s Eve. We got there many hours early and were sectioned off into blocks. We were told that if you left the barricaded block, you wouldn’t be allowed back in, that meant even for the bathrooms. When I inevitably had to pee, I ended up holding it for hours. It was miserable. Looking back, why didn’t I just tell the person standing watch that I had type 1 diabetes, a medical condition that can make you urinate more frequently at times? I’m sure they would have made an exception. But instead I suffered in silence.

More recently I went to an amusement park where we stood and waited in long lines in the 90 degree heat. It was rough. When talking to a friend, she mentioned that some amusement parks will give your group a pass to cut the lines if you have diabetes. I get it, it’s hot, there are long lines, people can get low blood sugar stuck in line. I think this is a great option, especially for families with kids. But this is also where I’m torn. I do so much work on a daily basis living with diabetes, on one hand it seems like I should take the break when and where I can get it. But on the other hand, I’m always prepared, I know I’m capable of waiting in long lines, I carry sugar with me always, do I really want to “pull the diabetes card”?

There’s no right or wrong in this situation. People do what they are comfortable with, what they need to do. I’m not judging anyone’s choices in situations like this, I’m more reflecting why it’s so hard for me to accept these types of privileges and allowances. I think what it comes down to is not wanting a chronic disease to make people have to treat me differently, even if the treatment is beneficial. Type 1 diabetes is an invisible disease, people don’t know you have it unless they see a pump or sensor or see you check your glucose or give a shot. I’ve spent so much of my life blending in with diabetes, not ashamed at all of it, but choosing not to stand out. I tell the people I need to that I have it (friends, teachers, coaches, fitness instructors, etc) and I’m always willing to answer questions about it, but I don’t like people making a fuss or singling me out because of it.

I’ve spent the last 18 years figuring out how diabetes fits into my life. How much I want to share, what I feel comfortable doing or not doing. It continues to evolve as I too continue to change and grow. And maybe sometimes it’s okay to be singled out, to get a break. I’ll let you know what happens the next time I go to an amusement park…