2015 Diabetes Blog Week Day 3- Clean it out

Diabetes Blog Week

As many times as I’ve tried to empty my closet, there is one thing that just keeps lingering. It’s like that piece of clothing that you really should get rid of, but something makes you hang on to it, even if it doesn’t fit or you don’t particularly like it anymore.

For me, I need to clean out this one stubborn bad habit I have- bolusing after I eat instead of before. This is not a new issue for me, in fact I’ve written about it twice before. The first time I talked about how it really comes down to control, and how giving insulin before I eat feels like giving up control of what and how much I eat. The second time I wrote about it was in reference to having a cue to remind a behavior…but obviously the cue didn’t stick and the new habit never developed.

It’s a habit that I know if I could develop would help a lot with my post meal spikes. So why is it stubbornly sitting in my diabetes closet?

It’s probably a combination of reasons:

  • I’m forgetful, plain and simple. I don’t think about bolusing often until halfway through my meal or after
  • I don’t want to give the insulin and end up not eating everything I gave insulin for and then either drop low or end up eating more food than I want
  • It’s something to blame for why my A1c has been pretty much hovering at the same place for the past year and not going down. It’s an excuse I tell myself, a way out for why there hasn’t been much positive change lately. “Well once I start doing that regularly my numbers will look better.”
  • Habits are hard to break and I haven’t given it the effort and investment it needs

Maybe this is the spring cleaning, the kick in the butt that I need to finally clear out this bad habit…for good. I definitely don’t need it cluttering up my closet anymore.

This post is part of the 2015 Diabetes Blog Week. Today’s topic: Yesterday we kept stuff in, so today let’s clear stuff out.  What is in your diabetic closet that needs to be cleaned out?  This can be an actual physical belonging, or it can be something you’re mentally or emotionally hanging on to.  Why are you keeping it and why do you need to get rid of it?

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?

2015 Diabetes blog week Day 1- I can




“What have you or your loved one accomplished, despite having diabetes, that you weren’t sure you could? Or what have you done that you’ve been particularly proud of? Or what good thing has diabetes brought into your life?”

My diabetes has given me knowledge and a need for understanding.

 

It has given me knowledge about an autoimmune disease and the various complicated pieces of managing it. It has taught me to truly understand my body and how I feel, what I need, and when something isn’t right. It has taught me the influences, interactions, and consequences of everything I do and its effects on my body and blood sugar, from food to exercise to stress. It has made me an expert in carbohydrates, a constant cruncher of numbers, and a person always seeking for answers, explanations, and ways to improve.  

My diabetes has given me empathy and gratitude.

 

Diabetes has given me a window into life with other illnesses and obstacles. Every disease is different and has its own set of challenges, but it has helped me to be empathetic towards everyone and what each person is going through. It has taught me to not be so quick to judge, to stop and consider what other people may be going through, even behind closed doors. It has given me an appreciation for the health and abilities that I have and gratitude for the way things are, as there are people that are not as fortunate. 

My diabetes has taught me to stand up for myself.

 

Between all the doctor’s visits, calls with the pharmacy and insurance company, nurses, and medical device customer service, I’ve learned to not put up with mistreatment and disrespect. I value my health and have learned that I don’t have to put up with people who don’t respect my time or my health. From switching doctors to getting the courage to ask for a manager on the phone, my diabetes has helped me be more assertive and in charge of my condition.

My diabetes has taught me about hard work, persistence, and discipline.

 

There are good days and there are bad. My diabetes has shown me the importance of having goals and that hard work usually pays off in the end. It has taught me that even when things aren’t going well, to stick with it, that tomorrow is a new day full of new numbers and new experiences. It’s taught me to not give up, despite the frustrations, challenges, and fatigue of caring for my diabetes. I’m strong enough to get through today, and the next day, and the next.

My diabetes has given me direction, purpose, and a voice.

 

My diabetes has led me into the field of public health and my career in health communication. My diabetes has helped me become an advocate for a cause I believe in. It has given me volunteer opportunities and led me to my position on the JDRF Young Leaders Committee. It has given me a voice through my blog and has led me to amazing people who I’ve shared my story with. My diabetes has given me a community. It has given me a sense of belonging, and my connections have inspired me in my own care. My diabetes has given me a platform to make positive change in the lives of others as we all work together to find a cure.

The Patient Experience

I work for a global healthcare leader. A couple weeks ago we had our company conference. While listening to the various speakers within the different business segments of the company, one theme became very prevalent. Leaders in pharmaceuticals, medical devices, and consumer healthcare, all kept emphasizing the same topic: the patient experience. Speeches were littered with phrases like, “patient-centered”, the “patient journey”, “putting the patient first”. As a public health professional and as a chronic disease patient myself, I was happy to see the clear focus shifting towards the patient.

But then I stopped to think about what this really means. As a type 1 diabetes patient, what does patient-centered care really look like?

To start, I can tell you what it does not look like. A few days ago, I received this letter from my health insurance company. At the top of the letter it read, “Talk to your doctor about this important issue. It may improve your health.” Intrigued, I kept reading. The letter explained that they had basically reviewed my health records and wanted to bring a potential health problem to my attention so that I may speak to my doctor about it. The health topic was on the back of the letter. Since my various doctors have already tested and reviewed my blood work, I was curious what health issue they may have missed. I turned over the letter.

The first line on the back said, “Our data shows that you may have diabetes.” The paragraph went on to explain the importance of checking for protein in the urine as a sign of kidney damage if you have diabetes. It’s not the letter itself that annoys me. I actually think it’s great that the health insurance company is sending reminders or health information to patients to bring up with their doctor. It’s the fact that the first line says, that I may have diabetes. Guess what? I do. And I have for the past 14 years. Honestly I find this letter off-putting and probably has the opposite effect than intended. I expect that my health insurance would know that I have diabetes, they see the diagnosis codes for all my doctor’s appointments, they aren’t making a leap to say that I have it. Telling me that I may have diabetes basically says that you don’t know me at all. It’s the opposite of patient-centered. It’s communicating that I’m just another medical record that a computer scanned and looked for key words or results to send a form letter.

If they had just changed the top line, I would have reacted completely different to the letter. They should have instead said, “Reva, since you have type 1 diabetes, here is some information that you may want to bring up with your doctor at your next visit.” This would have instilled confidence that my health insurance company actually knows my health condition, it would have felt more personal, and I would have reacted overall more positively to the actual information rather than getting caught up in the first line.

My “patient experience” doesn’t just happen in my endocrinologist’s office 4 times a year, it’s tied up in everything that is communicated to me and that I do day-to-day. It’s in letters like this one. It’s in all the moments between doctor’s appointments. It’s in the way that the doctor speaks to me and even in their particular word choices when talking about my diabetes. It’s in the waiting room or exam room when I’m waiting 30 minutes to talk to the doctor for less than 15. It’s in my conversations with customer service about my pump or CGM. It’s in my multiple phone calls with my mail order pharmacy when they screw up my insulin prescription or the countless inconveniences of getting my a1c test done. My patient experience involves the lack of integration and communication between doctors and health care systems and even medical devices.

I applaud the shift and emphasis on the patient experience. It’s about time. When a patient truly feels at the center of their care, that their time and efforts are acknowledged and respected, when their obstacles are recognized and addressed, I think there is huge potential for helping patients live longer and healthier lives. I’m glad to see that we’ve taken the first steps of a long, but necessary journey.

InsomniAHHH!

It’s truly amazing what our bodies can get used to. And for once, I’m not talking about diabetes…well not yet at least.

For the past 6 weeks I’ve been struggling with insomnia. I know that in the scheme of life, there are much, much worse things to have to deal with- tragedies, deaths, fatal illnesses, etc. I’m grateful that it’s nothing of the sort, but putting aside these more horrific life events, insomnia is probably next on my list of things I hoped I would never have to deal with.
You see I love my sleep. And for the past 26 years, I’ve been an superb sleeper. Getting at least 8 hours of sleep has always been incredibly important to me. I often prioritize my sleep over fun. It was a running joke among my roommates back in undergrad that when I couldn’t remember a particular crazy story that they were recounting they would say, “Oh, you were probably sleeping.” And it was true. My sleep was and still is that important to me.
And when I didn’t get my 8 hours, I suffered. I would feel foggy, dizzy, sometimes even shaky. I would get headaches and just overall feel slow and out of it. And I would feel this way with 7 hours of sleep. I know it’s crazy since that’s more sleep than most people get normally. But I was just so used to getting high quality sleep that anything less was noticeable.
Six weeks ago, I had a string of a couple bad nights. I would wake up at 5 am and not be able to fall back asleep. I would become anxious that I wasn’t sleeping and worrying about how miserable I’d be the next day and my body would start to feel electric. Pretty soon I got caught in a vicious cycle where even thinking about sleeping made me anxious. My normal oasis of a bed became associated with restless sleep. Now it would sometimes take me hours to fall asleep, or I’d wake up at 3 and not be able to fall back asleep. My 8 hours of sleep became 4 hours of sleep, to sometimes no sleep at all.
I wish I could tell you that I’m better now, that things are back to normal, but they’re not. After talking with a sleep disorder expert who happens to be in my family and taking online sleep programs, I have a plan and have been making progress, but I still have nights that I just can’t sleep.
While my diabetes isn’t directly related to these sleep problems, it hasn’t been making it any easier. It’s truly awful to have finally calmed down enough to start to doze off only to be jarred awake by the buzzing of my CGM or by the symptoms of a low. And while I know this isn’t a good solution, I’ve been letting my blood sugars run on the higher side at night just to avoid an extra middle of the night wake up. However, this plan has backfired when I wake up having to go to the bathroom from the high blood sugars instead.
This insomnia experience, although probably one of the more exhausting things I’ve had to deal with (haha, get it?), has also reminded me a lot of when I was first diagnosed with diabetes. I remember this feeling of being so overwhelmed, of wondering how I’d get through each day. I remember being constantly anxious of the unknown and worrying if I would be able to handle the challenges of the new diagnosis. But I did it, I got through each day. And I’m doing it now. As the weeks have gone by, I know that I can get through my work day on minimal sleep. It’s not ideal, but my body can handle it. I can handle it.
I know my insomnia, unlike my diabetes, is temporary (although hopefully a cure changes that too). But my diabetes has shown me that I can handle life’s challenges. That a bad day of blood sugars doesn’t mean that tomorrow will be bad too. A bad night of sleep doesn’t mean that I won’t be functional tomorrow. Our bodies are made to be resilient. We must choose if our minds will follow the example.

Missing puzzle pieces

I’ve felt like Goldilocks lately. Although maybe a Goldilocks with brown curly hair and way less luck.

I’m starting to have issues with my new endo. Again, the issues that I am having are less about the specific doctors and more about my frustrations with doctor’s and the office not utilizing the technologies that are available to them to their full potential. And misusing the ones that are.

Like most T1Ds, I have a lot of devices that carry a lot of data. And those devices are able to download their information when connected to a computer. But you get slightly different information from my pump (finger prick glucose numbers and insulin delivery amounts) than from my CGM (glucose numbers from the sensor) and I don’t always think that the CGM is the most accurate, especially at the beginning or end of the cycle I wear it.

At my new endo office, my doctor downloads my CGM and pulls up a graph of the last week. She doesn’t take my pump or meter, in fact, I once asked why not and she wasn’t even sure she had the right equipment to download from the pump. I completely trust that my doctor knows what she is doing and her recommendations do make sense. But I’m often left wondering if the recommendations would be the same if we were looking at 2 or 3 weeks worth of data or even looking at glucose numbers from my meter (which are on my pump) in addition to my CGM.

On one hand, I’m grateful. I remember when I was first diagnosed being handed a little log book that I would have to manually write in my glucose numbers. But on the other hand, I’m frustrated with the way things are. I want integration. Maybe it’s time that I align my pump and CGM to compatible companies. Then at least all 3 of my devices would be talking to each other for a more complete picture. But I’m lazy and don’t want to learn a whole new pump or CGM system when I’m generally satisfied with both separately.

And while part of the responsibility is fully on me as the patient, another part is on the doctor and the offices to keep up with changing technologies so that they are effectively and accurately using the data that is available to them.

I feel like my diabetes is a puzzle and my doctor is only looking at a handful of pieces when telling me what to change. You’re looking at the trends in my blood sugars, but you’re not looking at my boluses throughout the day. You’re not looking at the foods I’m eating (which I have been tracking in a separate app for the past 6 weeks) or exactly when I eat them (besides asking me generally when I eat). You’re not looking at when I’m exercising and what kind of exercise I’m doing, when my cycle is, when I got sick, and even when I was feeling extra stressed. My numbers are all important, but alone, they lose some of their meaning. You’re looking at my blood sugars essentially in isolation because:

A) that’s the data that’s available to you
B) we only have a finite time together so you aren’t able to ask me about all these other factors
C) there is no universally used platform that can integrate this information easily for you

I’m frustrated. But I’m also hopeful. I know that today, my data is more available, accessible, and interpretable than it was 10 years ago. But I know we have a ways to go before every office has the equipment, the skill and the motivation to look at the whole puzzle for every one of their patients, and not just a few pieces.

I’m a cord tucker

Ninety-five percent of the pants I own have pockets. When I wear a skirt, my pump is clipped somewhere that is not visible. My pump stays in my pocket, secure and hidden away.

In many ways, diabetes is an invisible disease, or visible only when you want it to be. I don’t think you could look at me and be like, “Oh yea, she has type 1 diabetes.” You might see me checking my blood glucose number, or take my pump out of my pocket to bolus for my lunch, maybe you see that I’m looking a little off from a low, but otherwise I don’t think I look any different than you do.

I’m a cord tucker.

But do you have a cord constantly hanging below the hem of your shirt? A cord through which life sustaining insulin travels. I have a cord. And in some ways that cord is symbolic of the difference between me and you. That cord is a visual reminder of a disease that I live with and manage every single day. But other times that cord is a sign of solidarity. Like when in a random bakery in Detroit, I saw your cord and knew right away that we had something powerful in common. That cord ties us together.

I’m a cord tucker.

Sometimes it’s a safety issue. I don’t want the cord to get wrapped around a knob or something and yank my infusion set out. So I tuck it into my pants so that it doesn’t hang freely. But sometimes it’s not about safety. It’s about not having to talk about my diabetes or answer questions when I don’t feel like it. It’s about remaining invisible when I want to be.

Yesterday, I hung freely.

I let my cord show. Yesterday it didn’t matter to me. I didn’t care who saw it. But you stopped me in the office kitchen, “I don’t mean to touch you, but there’s something hanging off your shirt,” you said as you reached towards my cord, ready to break it off like a loose, dangling thread. I didn’t care if it showed or not. But you did when you told me that my “stuff was all over the place,” gesturing to my cord hanging on my chair. You weren’t being mean, or judgy. You were trying to be helpful and maybe even concerned. You weren’t used to seeing a cord, and now you did. But do you really care if my cord is showing? Do I care? Maybe. Maybe not.

Today, I’m a cord tucker.

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!

Feeling low

I buried my head in my pillow, the soft fabric muffling my frustrated screams. I hate it. I hate it, I hate it, I hate it.

I was low. AGAIN. It seems to be the trend lately. My efforts to keep my blood sugars from spiking has resulted in more lows. Lows that seem unexpected because I really thought everything I was doing seemed right. Lows that have been incredibly disruptive, making me stop whatever activity I’m doing. Stubborn lows, that a couple glucose tablets don’t seem to solve. Lows that wake me up at night, lows that won’t go away, lows that leave me feeling awful. And upset. And frustrated.

I don’t want to treat the low. I’m tired of stuffing my face with sugar, not because I want it, but because I need it. I’m tired of working so hard in my workouts, only to have to later eat everything I burned off or sit out because I can’t continue with a low. I’m especially tired of eating when I’m not hungry and feeling awful while I wait for my blood sugar to stabilize.

I can see the extra weight creeping on, and I hate it. I hate that I don’t have a choice when I’m low. I hate that those forced extra 80 calories of my fruit snacks add up. I hate that insulin makes it harder to lose weight. I hate that these lows are often then leading to later highs, sending me on a blood sugar roller coaster. I hate not feeling my best.

I’ll talk to my doctor, I’ll make adjustments. We’ll work to get rid of these lows. But for now I just want to scream into my pillow and wish for the day when all of this will disappear. When sugar will just be sugar and not a substance that often feels like its controlling my life.

Some days, weeks, months are better than others. I’ll make it through this rut, I know I will, but today, right now, I really hate my diabetes.