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.

 

Balancing bouquets and blood sugar

You know that feeling you get when you forget your phone? It’s that uncomfortable, anxious, itch that leaves you feeling like a little piece of you is missing. Well this past weekend, I experienced a similar feeling, but it wasn’t my phone that I was without, it was my all my diabetes supplies.

This past weekend was my first experience being a bridesmaid in my friends’ wedding. What an incredible experience it was! The wedding was so beautiful and I was honored to be a part of it. But one piece I did have to think and plan ahead of time was what I would do in the event that my blood sugar dropped low during the ceremony. You see, the 20-30 minute ceremony was the only part of the night where I wouldn’t have immediate access to my purse and thus my meter, CGM, and fruit snacks. I had no pockets or place that I could easily access to put my fruit snacks. And it’s not that I haven’t gone that amount of time being away from my supplies, it was more the fact that I would be standing in front of a crowded room of people, lined up among the bridesmaids. Granted, everyone would be looking at the bride and groom and not me if I did have to step away and treat a low, but I really didn’t want to cause any type of disruption or set myself apart from the rest of the bridal party. I wanted it to be perfect for my friends.

imageBut part of having type 1 diabetes is always being prepared for an emergency and always putting your health first. So I was determined to come up with a solution.  My plan was to keep my blood sugar a little elevated during the ceremony, just to be safe. However that did not work as planned. Instead, I was fighting sky high blood sugars all during the day, so there was a very real possibility that it could crash during the ceremony, despite my best efforts. I thought about hiding the fruit snacks in my bouquet, but the beautiful arrangement wasn’t able to adequately conceal them. The final solution: I took a plastic baggie and dumped the pack of fruit snacks in it. I knew the plastic bag would be less crinkly than the wrapper. Then I folded down the edges of the bag so I could easily reach in for a gummy. Finally, I scrunched the bag as small as I could and held it in my hand, hidden within my grip on my bouquet of flowers. You couldn’t see them, but I felt secure knowing my fruit snacks were with me if worse came to worse. After all, it’s probably better to sneak a fruit snack during the ceremony than to pass out from low blood sugar  ;-).

Luckily I did not need my fruit snacks and the ceremony went perfectly. They don’t tell you when you’re diagnosed that you’re going to end up doing a lot of creative problem solving to make your diabetes fit your life. But not matter the situation, diabetes may be an extra consideration, but it will never stop you from living the life you want.

Diabetes Blog Week Day 3- Language

Diabetes Blog Week

Today’s topic:  Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples?

 

“You’re not diabetic. You have diabetes.” This is what my mom used to say to me back when I was first diagnosed. I was 12 years old. Honestly at that time, that distinction wasn’t that important to me, or maybe I just didn’t understand the difference. Today, I use the phrases interchangeably, although I get why my mom made the distinction. She didn’t want me to define myself by my diabetes. It was something that I had, not who I was. But while I don’t feel limited by my diabetes, it is a big part of who I am however I say it.

That was the first time I really thought about the nuanced language we use to talk about diabetes. But it wasn’t the last.

It was a few years ago. I was at my endocrinologist’s office for my appointment. My doctor had left the room briefly for something and my chart was open in front of me. I peeked over to see what was on the screen and I saw it: “diabetes mellitus type 1, uncontrolled“.

Uncontrolled?! Who, me?? The person who tries every day to manage my diabetes? The person who is constantly carb counting, correcting highs, and treating lows? The person who is always thinking about diabetes is uncontrolled?! What?!

It was such a slap in the face to see those words on the screen. I was sad and angry and confused. I felt like I had been incorrectly labeled…and judged. I felt like I wanted to write a paragraph explanation next to that word for whoever might read it. Why couldn’t it say something like, “Engaged patient, making progress, but room for improvement”? I know now that what I saw was part of the ICD-9 codes for billing purposes. And yes, at the time my A1c may have been higher that I’d like. But the fact that my struggles and effort of living a normal life with such a challenging chronic disease had been reduced to that single word was demoralizing.

I’ve since checked the codes that my doctor used, and I haven’t seen uncontrolled used again. But I’ve never been so angered and hurt by a word used to describe me and my diabetes. Even though I wasn’t necessarily meant to see what was written and it wasn’t a word that my doctor ever used directly with me, it demonstrated the power a single word can have and how important it is to be cognizant of the language we use when speaking about and describing diabetes. You never quite know the effect it may have.

Diabetes Blog Week Day 2- The other half

Diabetes Blog Week

Today’s topic: We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk?

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I’ve experienced all the emotions above as well as many others. I have good days where I feel proud of my blood sugar control, encouraged by the support that I receive from my family, friends, and online, and optimistic about the future. And I have bad days where I feel frustrated by my roller coaster of blood sugars, tired of having to constantly think about and manage my diabetes, and fearful about future complications. And sometimes when the emotions get to be too much, I become indifferent and burnt out.

What helps me when I find myself in a funk is to have outlets where I can essentially vent. I know that when I blog about my frustrations, that I’m not alone, and that others have been there too and got through it. When I talk to friends and family, they may not completely understand what I’m going through, but they validate my feelings and listen to what I have to say.

Finally, there are 3 phrases or mantras that have really helped me find perspective and get through tougher times.

You can find more The Other Half of Diabetes posts here.

Can I have a re-do?

I often dread my endocrinologist appointments. But at the same time, I’m thankful for the 4 appointments each year. They’re forced moments of reflection, confrontation, and adjustment. Before each appointment, I consider how things are going. I know if the past 3 months have been good or bad. If it hasn’t been a good 3 months, it’s a time to confront myself and delve into why my numbers have been high or low or just all over the place. Sometimes it’s my own self-management habits that have slipped, other times it’s factors that are out of my control like getting sick. Then based on how things are going, I make adjustments along with my doctor and move forward.

Today was one of those appointments that I just wanted to get over with. The past month and a half has been rough. My numbers have been running high consistently. Between getting a pretty horrible cold that lingered, having to go on steroids for the sickness, stress from a breakup, adjusting to time changes of traveling, and then just a weird couple weeks where it seemed like my insulin wasn’t working as it normally does, I knew my doctor would be looking at some pretty awful numbers at our appointment.

Part of me is disappointed. I don’t like to be this off track. I don’t like knowing that I’m potentially doing lasting damage to my body, that I’m increasing my risk of complications. But I also know that life happens. There’s a lot that I can’t control and those events may unfortunately impact my health by way of my blood sugar. All I can do is my best to try to manage the consequences.

Diabetes is a chronic disease. It means that as of right now, I’m stuck with it for the long haul, it’s not going anywhere. And as much as I get caught up in these mini 3 month sprints between appointments, there’s a bigger picture. Three months is not very long when you look at a lifetime. And shit happens. There will be highs and lows in life just as there are in my blood sugar. I admit, I’ve had other things on my mind lately besides my diabetes and I’m sure that’s played a part. But I can’t control everything that happens, at some some point you have to let go and just do the best you can within your circumstances.

So yea, I’m not thrilled about this appointment and the past few months. But unfortunately there’s no re-do’s or rewinds with a chronic condition. What’s done is done. Now, I’m putting aside my excuses and focusing on moving forward.

 

A day in the life

Some days I’m surprised I get anything done with how preoccupied I am thinking about my blood sugar.

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2015 Diabetes Blog Week Day 2- Keep it to yourself

Diabetes Blog Week

There’s one aspect of my diabetes that I’ve kept hidden, hidden from the Internet and online community, hidden from my friends and family, and in many ways, even hidden from myself. What have I hidden for so long?

My fear.

When I started this blog over a year ago, I stumbled on a blog post from Six Until Me from a couple years ago about PostSecret. Kerri asked her readers, “What would be your PostSecret submission?” A lot of people responded with different “secrets” that they had, but one really struck me. This anonymous poster’s secret is my own biggest fear, one that until now I have never told anyone.

“I feel that despite my best efforts, I will still end up suffering with complications, and I will have to live with the guilt of feeling like I did it to myself.”


This is probably the biggest internal struggle that I have. I know that keeping my blood sugar in control now will help me to avoid future complications. This is not a hard concept for me to understand. Yet, my A1c is consistently higher than I want it and higher than the recommended number to avoid complications. So the obvious answer is, lower it! Get it under control! It seems so easy, but it’s not. Every single day presents the struggle of keeping my numbers in range. Every. Single. Day. I have good days and I have bad, but I am trying.

I often wonder if I am too late, have I already done irreversible damage to my body? And who will I have to blame except myself if something does happen? Even with good control, it’s still quite possible to develop complications as I have read from other diabetic’s experiences. Then what? How do I explain that? How do you avoid the guilt and the blame and the “could have’s”? I know that I would be saying to myself, “you could have prevented this, you could have done more, you could have done better.” Maybe that isn’t true though.

In many ways I’m afraid of the future. But I hide that fear among my hope and optimism. I bury it under the long list of things that I have to do each day to manage my diabetes and live my life. I know that I can’t live my life in fear, I have to just live each day the best that I can and cross each complicated bridge when and if I get there.

This post is part of the 2015 Diabetes Blog Week. Today’s topic: Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?

Double check

It was a typical morning as I got ready to head to work. I ran through the checklist for the day:

Gym bag. Do I have my change of clothes? Shoes, socks? Water bottle.
Lunch box. Do I have my breakfast, lunch food, and snacks? Silverware?
Do I have my glucose monitor? Enough strips? Do I have my CGM? Is it charged? Do I need the cord?
Do I have extra supplies? Insulin, infusion set, inserter, reservoir, extra syringes?
Do I have enough fruit snacks if I go low? Maybe grab a couple more.
Phone. And charger.
I need my work badge.
Do I have my hat? And my gloves. Where’s the other glove?
Wallet.
Car keys. And apartment keys.

I think I’m ready.

Let’s go.

Twenty minutes later I walk into work, ready to take on the day. I reached into my pocket. Empty. The other? Empty as well.

Insulin pump?? Where’s my pump? Shit.

Back home I go. I’m so forgetful sometimes.

When life hands you lemons…

My sister recently found out that she may have Celiac Disease.

As directed, she has completely cut gluten from her diet. While more and more gluten-free options are becoming available both in restaurants and grocery stores, it’s still a diagnosis that comes with its own set of challenges. I’ve watched her as she’s adjusted to this major lifestyle change. I’ve watched her grapple with finding something she can eat on a menu, watched her reluctantly turn down food at an event, watched her patiently pace the aisles looking for the gluten-free options or alternatives to her favorite recipes. It hasn’t been easy, but she has risen to the challenge with tremendous strength, discipline, and optimism.

I truly admire how she has stayed so positive despite having to give up or modify so many of her favorite foods. How she’s taken on the added responsibility of checking every food label and having the discipline to turn down what she knows she can’t have. How she’s gone from having the freedom and ease of choosing essentially any food to having much more limited options. Through all this, she’s faced this change courageously, head on, and hasn’t let it get her down.

I admire what she’s had to do even more because I’ve been so reluctant to make my own dietary changes even though I know it would help me. While I know that she doesn’t really have a choice if she wants to avoid doing damage to her intestines, she still doesn’t complain. I know I should eat less carbs, I know I should cut back on sugar. I know it would help tremendously to stabilize my blood sugars, to lessen my insulin intake. I know it would benefit my overall health, but I haven’t made those changes to what I eat.

I look at what she’s doing and I find it inspiring and motivating. It hasn’t been easy for her, but she’s doing it and using it as an opportunity to grow. As she said to me, “I think of it as a challenge, as a way to stay healthy, learn new foods I might not be used to eating, and definitely learn to cook better with the foods I can eat.” In many ways she’s given me hope that when I finally decide to make (less significant) changes, that I too can do it. And with so many people with both type 1 diabetes and celiacs successfully balancing both, I know that when I’m ready, I will have plenty of resources and inspiration within the DOC too.

No one asks for these types of challenges. Whether it’s balancing blood sugars on a daily basis or completely eliminating a protein composite from your diet, life is full of obstacles. It’s how you approach them that makes the difference.

I’m lucky to have such motivating, positive, and strong role models in my life. People who when handed lemons, they make amazing gluten-free lemon bars with almond crust!