Saying goodbye

“Are you going to take that out now?” The pump trainer was staring at the purple, sparkly covered dexcom sensor that was still attached to my stomach. My old sensor. She had just helped me insert the new enlite sensor that integrates with my upgraded pump. Clearly in her mind, my old sensor was no longer needed.

“No. I think I’m going to keep it in for another week, see how the two compare.” Yes, it was a challenge. And I met her questioning look with my defiant one.

You see, I didn’t want to give up my old sensor, I loved it. And I trust it. And now I was switching to a sensor that to be honest, I have not heard great things about. I switched because of the benefits and upgrades that the newest pump in June will have. But for now, I was skeptical and reluctant to give up the security and trust I had developed with my dexcom.

I’m trying to think of an appropriate analogy that can help you understand the magnitude of emotions that is involved with this transition and what is at stake. It’s like ordering your favorite meal at your favorite restaurant. You know what to expect and you know it’s going to be delicious. But it’s more than that, maybe you’ve been eating this same food at this restaurant since you were young. It’s not just about the food, it’s also the memories and traditions that are tied together with the food. Now imagine that restaurant closed. You’re devastated, but you decide to try the same meal at a new restaurant with a slightly different recipe. You try to keep an open mind, but how can it possibly live up to your expectations?

IMG_4132So I wore both sensors, and every time I would prick my finger, I would compare the three numbers, silently rooting for my new sensor to be just as good as my dexcom.

And for the most part, the numbers were pretty similar. But every once in a while, something would happen that would make their differences even more pronounced. It would remind me that even though the meals may taste similar, the new one just is missing that special something.

But I reminded myself that the restaurant is closed, I have to make the best of the new situation, and while it’s not my beloved meal, maybe there’s something about this new meal that I too could learn to love.

So I did it. I said my goodbyes and took out my dexcom.

I’m going to be honest, I miss my old meal and restaurant. The new one is fine, but it’s just not the same. But luckily, there’s a brand new restaurant coming in June that promises to be even better than my old favorite. Fingers crossed.

 

 

That time I cried like a baby

I recently got a new insulin pump (in order to have priority for an even newer one). I have a lot to say about this and there will be more to come, but part of upgrading to the newer pump was also switching to a new continuous glucose monitoring system. I have to admit, I am not at all thrilled to be switching. I love my dexcom CGM, but I understand that there are trade-offs and I’m hoping that ultimately, the switch will be worth it.

This new CGM sensor however, gets inserted much differently than my old one. It uses a spring loaded device that you load the sensor into, hold it against your skin, press the button, and the needle gets propelled into your skin.

Here’s the thing. I hate needles, but I deal because overtime what was once difficult and scary, becomes familiar. And there is comfort in familiarity and routine. And I know myself, and having to switch to a new way of doing something terrifies me. It’s the fear of the unknown. Will this hurt? What will it feel like?

Here’s my post from 2013, it’s when I first had to insert my old CGM. I was so scared. This insertion didn’t have a button, I had to manually push this needle down and into my skin. It was new and different and terrifying. But I did it, and overtime, I got used to it.

So fast forward to this week. This new sensor insertion uses a button! For those of you who didn’t read my old post, I love buttons! It means I don’t need to see the needle or have to keep plunging it through my skin even when it hurts. But even though I love buttons, this was still something new.

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So there I was, the sensor loaded into the inserter, the inserter pressed lightly against my stomach, my fingers poised and ready over the buttons. And I completely froze. I couldn’t do it. I couldn’t press the buttons. What would this feel like? I’m about to forcefully propel this piece of metal straight into my stomach. What if it really hurts? What if I get scared and pull away? What if I bleed? What if it gets stuck? I was petrified and paralyzed. The tears started rolling down my cheek. My hand was practically shaking now. “I don’t know if I can do it.” I texted my sister.  “I don’t know what to do. I’m too scared.”

I took a deep breath and tried again. I held it against my stomach, my fingers on the button, pushing, but not hard enough. But now I was fully crying. I’m a strong, independent adult, and here I was crying at the prospect of inserting this sensor, even though I’ve literally stuck myself with needles thousands of times before.

So what did I do? Called my parents…naturally. They both answered the phone together and through my sobs I explained that I was too scared to insert this sensor and I didn’t know what to do. They both agreed that this spring loaded insertion would probably hurt even less. My mom offered to stay on the phone or for me to drive to their house and she’d sit with me. But I knew I needed to do it today. She told me to take a deep breath in, and focus on letting it out when I pressed the button. A yoga breath, she explained.

“This reminds me of when you were 12 and newly diagnosed, sitting at the picnic table and you were so scared to push the button to prick your finger. But you did it when you were 12 and you can do it now when your 28. You can do this!” My dad was right. I could do this.

I hung up on the phone and took a deep breath like my mom told me. And with shaking fingers, I pressed the buttons, launching the needle into my stomach. And guess what?! It didn’t even hurt! I was so relieved.

Living with type 1 diabetes is not easy, you learn to manage but there are still these occasional moments when you are truly tested. As I shared this story with my friend, he reminded me that these are the moments that you look back on and can say to yourself, “Look what you did! Look how strong you are!” Yes, I cried like a baby, and I called my parents for support, but I did it. And I’m a stronger person because of it.

What does the way you wear your insulin pump say about you?

(Please note, all these descriptions are completely fictional and not based on any evidence besides my own imagination. That being said, enjoy!)

 The Black Box

img_3762You like a little mystery in your life. It’s not that you don’t put yourself out there, but you tend to initially hold back details and information until you feel comfortable in a situation. You like to play your cards close to your chest and it sometimes takes you time to open up. You think before you act and don’t like to rush into decisions. Your friends know they can always trust and depend on you.

 

The Peek-a-Boo

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You tend to be a cautiously optimistic person. You’re someone who might spontaneously book a trip to Europe but then research all the places you want to visit and where to stay. You like to try new things, but prefer to have a buddy to do them with. Your friends can count on you for a good time, while also knowing you’ll have their back.

 

 

The Loose Thread

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You’re someone who’s full of surprises. People may misjudge or underestimate you, but you prove them wrong. Or they think they know you, and you do something unexpected. You’re not afraid to be unique. You’re someone who likes to look for creative solutions or view issues from different perspectives.

 

 

 

 

The Exhibitor

img_3765You’re not afraid to put yourself out there. You’re open to new experiences and aren’t afraid to get uncomfortable. When you talk, people listen and respect what you have to say. You live boldly, and are ready for what life throws your way, the good and the bad. You like to keep busy and enjoy the company of others.

 

 

 

 

The Dangler

0d541d06-94d0-4caf-8ff4-2626ec2161d2You live life on the edge. You know that life is messy and things don’t always work out the way you plan, but you’re willing to take risks and put yourself out there. You’ve made mistakes, but you’ve also learned from them. You’re cool under pressure and like to go with the flow. You’re always looking for your next adventure.

 

 

 

 

Foster dog and self-care

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.

New Routine

I’m not so good with changes, and there’s been a lot of them lately. About 2 months ago I started working full time from home. Besides being a pretty big adjustment mentally, it’s also meant pretty significant changes to my normal routine. So what’s changed?img_3165

  • My wake up time (no commute means sleeping in later)
  • My meal times
  • What I eat for meals since now I have access to my full kitchen and appliances
  • My workout times (taking my lunch break in the morning to do a fitness class is a nice benefit of working from home)
  • My actual workouts (started going to a barre class to get myself out of the apartment)
  • My snacks (the meal time shifts have meant less afternoon snacks)
  • My bedtime (sleeping in later sometimes means staying up later)

Do you know what all of these changes in my routine also has effected? My blood sugar! Imagine that!

With the predictability of the past 3 years’ routine gone, I’ve been trying to get a handle on my blood sugar’s behavior with this new, more unpredictable routine. Working out in the morning as opposed to after work has been affecting my blood sugar differently, as is the type of exercise, transitioning from more cardio based to more strength based.

Then to complicate things even more, I started taking metformin to help increase my insulin sensitivity. I love that there are less drastic spikes in my blood sugar, but now I’m also dealing with more lows as I work on figuring out the right adjustments to make. And then I got sick for a week and everything got shot to hell as I combated constant stubborn highs.

Needless to say, there’s been a lot of ups and downs the past couple months as I’ve been adjusting to all these changes- physically, mentally, emotionally, and blood sugarally.

Honestly, I’ve been pretty resistant to change. But as I’m realizing, things are going to change regardless of how you feel about it. And you can choose to resist it, but what good does that do? Instead, I’m working on focusing on the benefits of my new situation. As the year comes to a close, I can’t help but reflect on all the changes from this past year and where I am today. Instead of being a passive recipient of change, I’ve started to think of what changes I can actively make in the New Year to help me feel empowered by my situation, rather than a victim of change. And what I can do to help me find balance, both in life and with my blood sugars.

A T1D on Halloween

The year I was diagnosed with diabetes, my parents made me donate all of my Halloween candy. They may have let me keep a few pieces, but my pillow case full of tempting treats was donated to kids who did not have the opportunity to trick-or-treat. I understood why my parents were making me do this, but secretly I still was pretty angry and sad. It wasn’t fair. Why did I have to give away my candy? None of my friends had to. After all, Halloween is all about the candy, or so I thought. The next year, instead of handing out candy, my parents decided to hand out little bags of pretzels. Yes, we became that house. Although it could have been worse, my dad is a dentist, at least we didn’t give out toothbrushes…

The next year I probably went out trick-or-treating with friends and was told that I could have the candy in moderation (which really is good advice for anyone). But honestly somewhere between that first Halloween with T1d and now, Halloween became about so much more than the candy.

Pumpkin Carving

Every year since I was little, my sister and I have carved our pumpkin with my grandpa. As we’ve become older, that tradition has become even more important and special.

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Pumpkin Seeds

Seems kind of random, but I really enjoy cooking the pumpkin seeds and trying out different seasonings. This year I made some that were cinnamon sugar, some that were a Cajun type seasoning, and some plain salt ones. I also think I ate them all that same day. Oops.

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Costumes!

I love making my Halloween costumes, and have gotten pretty creative over the years. I seem to especially enjoy dressing up as food items.

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Candy will always be part of Halloween, but for me, Halloween is much more than that. And yes, it’s probably for the best that as a diabetic I am less focused on the massive amounts of sugar. But it doesn’t mean that I can’t still enjoy it. Over the years, I’ve heard a lot of comments, assumptions, and jokes made about diabetics and candy and Halloween. But you know what, nothing is black and white with diabetes including how we celebrate candy filled holidays. I’ve found many reasons to love Halloween, and they have nothing to do with my diabetes. Although, Halloween candy is great for treating low blood sugars. So fellow T1Ds and everyone else, enjoy your Halloween! Carve your pumpkins, wear your costumes, eat your candy…or don’t! Just have fun!

Happy Halloween!

Four and a half

I was babysitting Saturday night for an adorable four and a half year old, the half is important because she reminded me she was four and a half a half dozen times. We were eating pizza and she noticed me take out my pump to give insulin for my meal.

“What’s that?”

It was an innocent question. But how do you explain type 1 diabetes and an insulin pump to a four year old? I haven’t spent much time around young kids lately, how much would she actually comprehend?

“This is a machine that gives me medicine.”

“Why do you need medicine?”

“I have something called diabetes. There’s part of my body that doesn’t work anymore, so I need to give myself this medicine.”

She thought about this for awhile.

“Will I need that?”

“Hopefully not. Your body doesn’t need it, everything is working and doing it’s job.”

“My mommy doesn’t have that.”

“Nope. She doesn’t need it either.”

“Do you always have it?”

“Yup, it’s always with me.”

And that was the end of that. She seemed satisfied with my explanation and moved on to trying to teach me how to play chess (with a few questionable new rules).

In that moment I couldn’t help but think about all the four year olds out there whose understanding of type 1 diabetes is so much more complex because unfortunately they’re living with it. I was 12 when I was diagnosed, I never had to experience diabetes at such a young age. Such little people living with such a big, burdensome disease.

I hope the future is filled with way more naive, innocent 4 year olds who will never have to know what it’s like to live with type 1 diabetes.

 

I wish I had told you

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.

What my diabetes has taught me about life’s rough patches

There will be good days and there will be bad days. It’s inevitable. And it’s okay. The bad days are what help you appreciate the good ones.

Tomorrow is a new day. Each day is an opportunity to start over, to begin fresh. Yes, it may not be any better than the day before, but the positive potential is there. A day of bad blood sugars today doesn’t mean tomorrow will be bad too.

Some things are just out of your control. I can’t account for every high and low blood sugar, I can do everything “right” and it still in unpredictable. Same with life’s events. Some things you can’t control, but what you can control is your response and how you cope with it.

To feel better often takes effort. I’ve gone through burn out with my diabetes, where I just wanted to ignore it. To stop carb counting, bolusing, monitoring what I’m eating, stop thinking and just live. But you can’t, because you end up feeling worse. Rough patches will pass with time, but you don’t want to be stuck in a downward spiral of self-wallowing and unhealthy behaviors. Reaching out to others, getting enough sleep, getting out of the house and not eating only junk foods can help keep you from sinking further into despair.

Some things in life aren’t fair. They’re just not. And they suck. You can get angry or sad or frustrated. But at some point you have to accept it and move on the best you can. It’s not fair that I have an expensive, complicated, incurable chronic disease, but I do and life goes on.

People won’t always understand what you’re going through or know how to help.  Some people will try to help and be there for you, some people will say things that make you mad, some people will be ignorant. But most people have good intentions. If you need support, you can’t assume people know what to do or say. You need to be explicit.

There’s no quick fix. It takes time. It takes effort. It’s a life long process. Every single day with type 1 diabetes requires vigilance and care. There will continually be challenges and low points in life and while you can learn positive ways to cope, to be resilient, you can’t just snap your fingers and instantly feel better.

Your feelings are valid. We all have different responses to life’s events. Your response may be different than someone going through the same thing, but what you’re feeling is completely acceptable and normal. Own your experiences and your emotions and use them to fuel positive action.

You’ll get through this. You’re strong. You’ve made it through life’s challenges before. Yea, it may have been hard, you may have struggled and even failed. You may have needed help. There may have been tears. But you persevered. And you’ll get through this too.