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Saturday, May 16, 2015

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?  

Friday, May 15, 2015

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. 

Thursday, May 14, 2015

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

Wednesday, May 13, 2015

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?

Tuesday, May 12, 2015

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?

Monday, May 11, 2015

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.



Sunday, April 26, 2015

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.