Diabetes Blog Week Day 5- Tricks

Diabetes Blog Week

Today’s topic: Let’s round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There’s always something we can learn from each other.

For me, diabetes “tricks” are really just more safeguards that I’ve created for myself to cover for the fact that I’m actually not very organized when it comes to my diabetes. But you know what, it works for me and that’s what’s important.

So here are my diabetes tricks, which are essentially tricks that I play on myself so that I don’t find myself in hot water with no supplies left. Or ways to make the supplies I do have last longer.

Hide things from yourself. I don’t have an organized system to remind myself to reorder supplies. And while I know many companies offer automatic refills, it never matches up to when I actually need supplies so I end up stopping it. Basically, when my supplies look like they’re running low, I order more. But sometimes things don’t go smoothly. I forget to order. Or there’s a hold up with the pharmacy and they need my doctor to write a refill which takes longer. Or they mess up the prescription. And then days and sometimes even weeks pass and I start to freak out because I’m running out of insulin and I need it to live! But then I remember my trick, I hide an extra bottle of insulin from myself so even when I think I’m out, I really have one left! Genius! And I do this for all my supplies, I keep an extra bottle of test strips, a sensor, and a couple infusion sets separate from the rest of my supplies just for emergencies (or moments of forgetfulness)

Buy bulk. I’ve used many things to treat lows over the years, but my food of choice are packets of fruit snacks. They’re small and portable, they’re the right amount of carbs for most of my lows, you can eat part of a pack, they don’t raise my blood sugar too high and they work quickly, and they’re cheaper than glucose tabs and other snacks. So I go to Costco and I buy the box of 80 fruit snacks (which are usually only like $10-$12 in store for the box). But I don’t just buy one giant box, I buy 2 and sometimes 3. I keep one in my apartment, I keep one in my car, and I use one to refill all my stashes of fruit snacks in every coat pocket, purse, and bag. This way I can guarantee that I am never without a way to treat a low.

Find good tape. When it comes to my CGM, I wear that thing as long as I am getting accurate numbers, which I beyond the approved 7 days. But I never would be able to wear it as long as I do without the comfortable, sticky tape that I place over it. I currently use Hypafix, the 4 x 10 roll, and am a huge fan. Having strong, reliable tape is a must when you continuously have tubes and sensors stuck in/to your body.

 

 

 

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Diabetes Blog Week Day 4- Healthcare Experience

Diabetes Blog Week

Today’s topic: Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? 

Oh man, I don’t even know where to begin. I’ve had so many awful experiences with doctors, offices, insurance companies and pharmacies. I can’t forget about the Epic Letter of Complaint that I wrote and sent to a former endocrinology office. Or the more recent Insurance Frustrations I’ve dealt with that are all too common.

Unfortunately I have yet to have a doctor and office where I felt like I consistently received competent, respectful, helpful care. Some visits and doctors have been better than others, but on the whole, there is much room for improvement. In fact, at my last appointment, the doctor forgot to check my A1c! We’re talking lack of basic diabetes care here.

So I’d like to invite you to my imaginary endocrinology appointment, an idealistic appointment where I get the exact care and consideration that that I as a patient and person deserve (and you know, a few extra perks since this is my fantasy appointment after all).

Receptionist: Good morning Reva, you’re here to see Dr. Rainbow?  Please have a seat in the massage waiting chairs, the doctor will be with you in a just couple minutes. She is actually running ahead of schedule this morning.

Nurse: Hello Reva, come on back with me. I can take your pump, dexcom, and meters from you. We’re going to download all your numbers and information and use a software that graphs them together. Do you use any additional apps that we can also incorporate the information? Any fitness or food tracking apps? With this integration, we can get a better idea of how exercise is affecting your blood sugars and if your carb and insulin ratios are adjusted for the foods you eat and when you eat them.

Now we’re going to check your A1c right here in the office with a simple finger poke. We know how annoying it can be for you to have to go to a separate lab early in the morning before work and before your appointment to get your blood drawn to check your A1c. And then have the lab forget to send it to your doctor so it isn’t there when you arrive for your appointment. We wouldn’t want that to happen to you.

You’ll be in exam room 2. It looks like the doctor is ready for you now.

Doctor: Hi Reva. I wanted to let you know that all your prescriptions are up to date. We were contacted by your pharmacy that your insulin prescription needed a refill. So we took care of that and it should be all set when you’re ready to order more.

So, how do you feel things are going? I have your graphs up on the screen and I can see some places that we can make some small adjustments. But before we go into that, do you have any specific questions or concerns  you’d like to talk about?

Our nutritionist is in the office today if you’d like to meet with her after we finish. Now let’s take a look at your graphs. Your A1c is looking good, good work on improving it since our last visit.

I also wanted to see if you’d be open to talking about or trying different brands of insulin or other medications that have been approved for use with type 1 diabetics to see if we can get your numbers under tighter control. What I would hate to have happen is to not talk about other options that exist, since treatment of type 1 diabetes has progressed over the years. We pride ourselves at this office with keeping up to date with the latest research, technologies, and treatment options. You deserve the best care that we can provide and we will work together to make sure you get it and reach the goals that we’ve worked together to set.

Is there anything else that you’d like to cover that I may have missed today? I want to make sure that you feel like you got the most out of this appointment and feel comfortable with your changes and next steps. Great.

Well, I look forward to seeing you in 3 months. If you have any questions over the next few months, please don’t hesitate to call, email me, or use the patient portal to communicate and I will personally respond within 24 hours. I would hate for you to have to make multiple calls and wait days to get a simple answer from me.

Have a good rest of your day and keep up the good work!

And scene.

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?

wordle

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.

Diabetes Blog Week Day 6- Favorites

Diabetes Blog Week

I have a lot of posts that I like, but this one from January 2013 might just be my favorite. It attempts to explain the complicated relationship that I have with sugar…

If my relationship with Sugar were on Facebook, it would say “It’s Complicated”.

I’m not sure when Sugar and I first met, it seems like we’ve known each other forever. I hadn’t really paid too much attention to him when I was young, but I was always happy when he made an appearance. Sugar, or Sug for short, didn’t really come around too often. I think he was intimidated by my dentist dad and health conscious mom. He did however show up at birthday parties, holidays, and other special occasions. He and I always had a good time together, especially eating candy at the movies, cotton candy at the fair, and ice cream in the summer.

When I was diagnosed with type 1 diabetes, my relationship with Sugar began to change, and has been evolving ever since. I think that was the first time I really took notice of him. He had that certain mix of sweet, yet dangerous. He’d make you feel good, but left you wanting more.

I couldn’t stay away.

Sug and I began to spend a lot of time together. When we weren’t together, he was constantly on my mind. There seemed to be two sides to him. On the one hand, he could always make me feel better when I was feeling low. I needed him, and he was always there for me. But on the other hand, when I spent too much time with him, he’d make me feel sick.

I know that Sug can be trouble. In the past few years he’s started showing up at the bar where I’d be hanging out with my friends.“He’s coming over,” my friends would tell me, “and he looks good!” He would approach the table with an invitation that is hard to refuse. Tripple sec, sour, orange juice, and cranberry juice. He was coming on strong tonight! He’d clearly already worked his magic on my friends, sometimes he could be so sweet that it was hard to say no to him. I eyed my other options, water, beer, vodka soda, but his smell was intoxicating. The thing about Sug is that you always have a good time with him, it isn’t until later that you begin to regret your decisions.

We often get into arguments. I tell him that I don’t want to hang out all the time with him and his friend Cal O’Rie, that the two of them are trouble when they are together. He accuses me of cheating on him with Complex Carbs, even though he knows it’s not the same. In the end though, we always apologize, we both know that we need each other.

My friends and family often try to tell me that he is bad for me. “Look at how he makes you feel, your relationship with him just isn’t healthy.” Sometimes they are right, he is bad for me. But even though our relationship is complicated, sometimes they seem so hypocritical. “How can you say that to me? I know you guys hung out last weekend. I saw the candy wrappers in the trash!” I would say. When they would tell me that I was better off without him, it just made me want to prove them wrong. “You don’t know what you are talking about, we just shared that piece of cake together and everything is fine!” At least I wanted it to be. It truly is a roller coaster when we are together, but we face those highs and lows together.

I know my friends and family just want what’s best for me, but they don’t know him the way I do! Sure Sug comes over to their houses disguised as a tub of ice cream or chocolate, and they say he helps them through their hard times and pain, but it’s not the same. No one can make me feel better the way he does, no one can take away my lows as fast, no one knows what it’s like to need Sugar that badly sometimes.

It’s hard to say if Sugar and I should be together or not. I know that he helps me, but he has the potential to hurt me as well. We have one of those relationships that other people might not understand and may not always be perfect, but in the end, it’s pretty sweet.

This post is part of Diabetes Blog Week. Today’s topic: If you have been blogging for a while, what is your favorite sentence or blogpost that you have ever written?  Is it diabetes related or just life related?  

2015 Diabetes Blog Week Day 5- Diabetes Personification Wildcard

Diabetes Blog Week

Even though this topic was my idea, I’m still struggling to imagine what my diabetes would look or sound like if it were a person. Let me tell you a little about my diabetes and then maybe by the end, we can piece together what it looks like.

My diabetes is for the most more rational than emotional. It’s responses can usually be calculated. You do A, then B will happen. I don’t see my diabetes as an empathetic, understanding friend that when you’re running late and stressed, is caring and compassionate and will give you good blood sugars. No, my diabetes doesn’t pick up on cues like that, it will send you low at the most inopportune time, maybe for it’s own entertainment.

My diabetes is unpredictable and can kind of be a dick sometimes. Everything will be going great and we’ll be getting along fine when out of the blue he’ll send me shooting high or drop me really low. WTF diabetes! We can’t be friends if you do stuff like that.

But that’s the thing, we aren’t friends. You choose your friends. I didn’t choose my diabetes, we’re stuck together. We’re more like family along those lines. And since I know he’s not going anywhere, we try to make the best of our situation.

So if we’re family, and I think I’ve somewhere in the post decided my diabetes is male, is he an older or a younger brother?

Like a younger sibling, my diabetes sometimes tests my limits and my patience with his daily annoyances. But with some teaching and guidance, he can be pretty well behaved. But like an older sibling, my diabetes can be manipulative. He has a way of getting me to do what he wants. When he needs something, he makes himself known and heard, but otherwise he seems content to let me live my life. I know that the often shitty way he makes me feel is his way of protecting me, his signals and alarms are a way to watch over me so that something worse doesn’t happen. Like an older sibling, he also ends up teaching me through our interactions.

So I guess my diabetes is somewhat like a protective yet annoying older brother. However I can’t say that I have love for my diabetes the way that I love my sibling. In fact, I’m pretty sure I’d be quite happy if I never saw my diabetes ever again. It’s a complicated relationship, we’ll leave it at that.

This post is part of Diabetes Blog Week. The Wildcard topic: If you could personify your diabetes or that of your loved one, what would it be like?  What would it look like, what would it say, what kind of personality would it have?  Use your imagination and feel free to use images, drawings, words, music, etc. to describe it. 

2015 Diabetes Blog Week Day 4- Changes

Diabetes Blog Week

When I think about diabetes and what I’d like to see changed, one word comes to mind. Well maybe 2, a cure would be a nice change. But the word I’d like to focus on is integration.

Integration. I could yell it from the rooftops. Integration would make diabetes so much easier to manage. It would make communication so much more effective. It would make our lives in general a little less burdensome. 


What exactly am I talking about?

I want diabetes devices talking to other diabetes devices. I want my pump, my meter, and my CGM to all communicate constantly. And while I know this is unrealistic, I wish that this communication could happen across companies so that my dexcom CGM could talk to my Medtronic pump or a Bayer meter could talk to an animas pump. I want numbers and data flowing freely from one to the other, whether it’s then used in a calculation, helping to inform a decision, or just being stored for later retrieval.

I want diabetes devices talking to non diabetes devices. I want my CGM numbers and my pump talking with my phone, presenting my data (carbs, boluses, blood sugars) in an easy to read and accessible manner in an app. I want their data showing up on a graph on my computer or tablet. I want other apps that I’m using to integrate in a platform with my diabetes data, whether it’s food tracking that I do or exercise tracking. How great would it be for one app that would have my carb and bolus information from my pump, graphed against my blood sugars that are collecting from my meter and CGM, informed by my Fitbit tracker active minutes and steps, and integrated with the food that I tracked during the day in My Fitness Pal?! Think about how much easier it would be to see a trends and potential causes for highs and lows. Based on the food you ate here, it looks like you gave too much insulin and that’s why you dropped low here.

I want ALL of these devices talking to my doctor. I want to be able to walk into my endocrinologist’s office or even my primary care physician, or eye doctor, or really any doctor’s office and have all of this information available to them. I want the information from all of my devices to be consolidated into a format that is integrated right into my medical record. Then when I go to the endo, they aren’t making suggestions based off of just my CGM, they are looking at the complete picture with little burden to me since all of this uploading, syncing, and integration happens automatically. 


I’m hopeful that these changes are coming soon, that this is the future of diabetes self-care. Integration will be a requirement, not just a nice feature. 


This post is part of the 2015 Diabetes Blog Week. Today’s topic: 
Today let’s talk about changes, in one of two ways.  Either tell us what you’d most like to see change about diabetes, in any way.  This can be management tools, devices, medications, people’s perceptions, your own feelings – anything at all that you feel could use changing.  OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes.  Were they expected or did they surprise you? You can read more posts on this topic here

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.