Dblog Week 2017 Day 5- More than Diabetes

I’ve always liked to exercise, and over the years I’ve found various different ways to stay active: playing tennis, going on bike rides, spinning classes, bootcamp, zumba, online workout videos, the list goes on. The key is to find something that you enjoy doing so that exercise is something you look forward to instead of feeling like you have to force yourself to do it.

A lot of my workouts I used to do on my own or in my apartment, but when I started working from home full time, I realized just how important it is for me to get out of the apartment and be around other people. And since my schedule usually allows for it, I can do my workouts over lunch or in the morning, instead of after work.

I have some friends that were taking barre classes and invited me to try out a class with them. I was pretty skeptical- I’m not good at dance or ballet, I’m not very flexible, and I’m used to fast- paced cardio workouts. A barre class just didn’t seem like it would be a good fit.

Boy was I wrong. The strength-based class was incredibly challenging and was way closer to Pilates than ballet. My legs shook, my muscles completely fatigued, my heart rate went up and I was sweating. With the upbeat music, the encouraging and friendly instructors, and the fact that every class follows the same structure but with different, challenging moves every time, I was hooked!

3462FF48-7909-4511-B2C6-E65CBDB3D197I’ve been taking classes for about 6 months now, last month completing my 100th class, my first major Pure Barre milestone. I’m happy to have found a fitness class that I look forward to going to and a community that I’m proud to be a part of.

And while I’ve had some trouble regulating my blood sugars with some of my other workouts, I’m able to keep my pump on during the class and besides a few lows here and there, my blood sugar stays pretty steady throughout.

So while there are many other aspects of my life besides my diabetes (my love of brunch, traveling, musicals, dog fostering, to name a few) exercise is definitely a big one and I know something that will continue to be a lifelong journey.

 

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Dblog Week 2017 Day 4- What Brings Me Down

Diabetes Blog Week

What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

Like most things in life, I think it’s pretty difficult to completely separate the emotions from an event. Pretty much everything about dealing with diabetes is emotional, just to varying degrees. And those emotions not only change over time, but also day to day, even hour to hour. When I was first diagnosed, poking my finger to check my blood sugar was the most agonizing process, there were tears and tantrums. Now I don’t even think twice. Some days I don’t even bat an eyelid at a high blood sugar, other days I get really upset and frustrated.

And sometimes, there are so many different emotions involved in a single event. Let’s take a look at an episode that happened last week.

Here’s what happened with all the emotion removed:

My blood sugar dropped to an objectively low number. My body experienced certain physiological symptoms for a finite amount of time. After 15 minutes, my body returned to normal functioning.

Now let’s add the emotion back in:

It was the guy I’ve been dating’s birthday. We were hanging out in his apartment after a nice celebratory night out when I started to feel low. I ate some fruit snacks. But 10 minutes later I wasn’t feeling any better, in fact I was feeling worse. I checked my blood sugar, 33. I stared at the number. “Uh oh. Not good. Not good. This is not good.” The low seemed to suddenly hit me full force. I got off the couch and laid flat on my stomach on the floor. For some reason I find the hard ground comforting during extreme lows. Looking back, I realize this was probably a very strange and maybe slightly alarming action for someone to witness who has never been around someone with a very low blood sugar before.

“What do you need?” The concern was clear in his voice.

“Churro.”

Image result for frita batido churroWe had stopped at a local restaurant that gives you a free churro on your birthday and had saved it for later. Typically I use fruit snacks to treat my lows, but in this low stupor, I clearly had one thing on my mind.

Churro in hand, he got down on the floor next to me, holding it as I took greedy bites. I remember mumbling about how good it tasted, even cold. “Stop talking, keep eating.” Gladly. At some point, I remember saying “I’m not going to pass out, but if I do, call 911.”

As I laid there waiting for the churro to work its magic, the emotions hit. Here we were trying to have a nice celebratory birthday evening and I probably had just scared the shit out of this poor guy. “I’m really sorry.” I was. This wasn’t how I wanted to be spending his birthday, or really any day for that matter. Then the insecurities. What if I scared him off, what if he decides he doesn’t want to deal with this? Or me? Then the frustration of just having such a bad low and feeling truly awful and wanting to feel better already. Then the gratitude of realizing I’m with someone who will get down on the floor next to me and hold me during my lows.

After 15 minutes, the low fog began to fade away and I started to feel better. And the night went on, life goes on.

The version of this story with no emotions is so much simpler and straightforward and yes, sometimes I do wish I could remove the emotions from managing my diabetes. But the emotions also serve a purpose. They remind us what’s important, they spur us to take action, and they can bring us closer to those around us.

 

Read more posts on this topic from other diabetes bloggers here.

DBlog Week 2017 Day 3- The Blame Game

Diabetes Blog Week

I had an interesting experience a couple weeks ago while flying to Las Vegas. I was stuck in a window seat, separated from my friend a few rows up. My CGM vibrated to let me know that it needed to be calibrated so I took out my glucose meter to test my finger. The man sitting next to me started to laugh. Not the reaction I was expecting.

I gave him a perplexed look.

“I was just about to do the same thing.”

Ohhh a fellow T1D! What a coincidence! It’s always nice to run into other type 1 diabetics in the wild. We started chatting, he told me he’s had type 1 for 26 years and no complications. We talked about his choice not to use a pump, how he exercises every day to help manage his blood sugar, and how he watches what he eats. But then the conversation took an interesting turn.

He started telling me about a coworker of his that also had type 1 and didn’t take care of himself and ended up passing away. And then another story about a patient at the office where he works who also was a type 1 with some pretty bad complications that he watched quickly progress and become worse and worse. I hear these stories, but not usually from another T1D. Forgive me, but being stuck on an airplane, I really don’t want to hear sad stories of people with type 1, I know what can happen. What started as a nice coincidence, started to feel more like a warning/lecture. When the flight attendant came around asking if we wanted pretzels, peanuts or cookies, I opted for the peanuts which I wanted, but wondered what my seat mate would have thought about me if I had chosen the cookies.

People manage their diabetes differently. I could tell that this man was very careful about what he eats (he didn’t touch the cookies that came with his airplane lunch combo), what he drinks, his exercise, and probably many other aspects of his diabetes and general lifestyle. And it works for him which is great, he’s healthy and seemingly happy. But when he talked to me, there was this inherent judgement in his voice and stories, he seemed to say, you should be doing this too if you don’t want to end up like the people in the stories. And sure, I know I could be better about certain aspects of my diabetes management and what I eat, but it’s my life and my decisions. I’m sitting here trying to think of what empowering thing I could have said back to him. But really, I shouldn’t even have to sit there and defend my choices and how I live my life with diabetes. Honestly, what I should have done was said “I’m sorry to hear that. If you don’t mind, I’d like to finish watching my movie” put my headphones back in, and enjoyed the rest of my flight.

DBlog Week 2017 Day 2- The Cost of Chronic Illness

Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?

All I can write for this topic is how fortunate and grateful I am that I have insurance that is willing to cover the supplies that I need and that I have a job that let’s me afford the high deductibles that I pay every year. Between the sensors, test strips, insulin, infusion sets and tubing, doctor visits, fruit snacks to treat the lows, diabetes costs thousands of dollars a year, even with good insurance.

It breaks my heart every time I hear that someone doesn’t have a CGM because their insurance won’t cover it and it’s too expensive. Or the horror stories of people not being able to afford the insulin they need to live. The devices and medication that we need to care for ourselves and stay alive should be accessible and affordable for all. End of story.

 

DBlog Week 2017 Day 1- Diabetes and the Unexpected

Diabetes Blog Week

Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?


You’ll never be 100% prepared for what the diabetic life will throw at you, but you can definitely try. Here are 3 tips that have served me well thus far.

Fill every pocket.

Maybe not literally, but no matter where I go, I always have the essentials with me. And depending on how far I’m going, and how long I’ll be gone, I fall into different categories of what I take with me. Let’s use a visual:

circles.png

That’s me in the middle there and everything in that purple circle are things that I always have on me, no matter if I am just stepping outside to throw away the trash. Since my pump is literally connected to me and my CGM is built into the pump, they’re always with me. I have a medical alert tag attached to my watch that I never take off, and I always make sure I have at least one pack of fruit snacks with me at all times in case I have to treat a low.

The second blue circle are things that are with me about 90% of the time in my purse or some other kind of small bag. Even though I might have my purse in another room for example, these items are always close by.

The third circle are items that I’d have with me either in a bigger bag like a backpack, or overnight bag, or stored in my car. They’re items that I probably won’t need on a daily basis, but I want to have with me as emergency back-up, especially if I’m going to be gone for awhile. I wouldn’t take them with me to run errands, but I would have them in a bag if I’m going on a half day kayaking trip for example.

When you’re prepared with the essentials, you’ll be more likely to handle the unexpected.

Use your support system.

Hopefully you have people in your life who love and care about you and are there to help you out in a pinch. I don’t like to rely on other people too much, but it’s good to know I can count on them if I need to. Just the other day, my blood sugar was running extra high and not coming down and I had to excuse myself from a social gathering. My friends immediately asked if I needed a ride home and if there was anything they could do or that I needed. And sometimes I end up taking them up on it. I was once driving a car full of friends to an event when my pump gave me an alert that the battery was going to die in 30 minutes and the pump would shut off. I was 30 minutes from home and 30 minutes to my destination. Luckily a friend who was meeting us offered to bring a few batteries. While I know I could have stopped at a gas station, her generosity saved us time and hassle. When you aren’t prepared for the unexpected, don’t be afraid to let others help you overcome the challenge.

Get creative.

With every pocket filled, you still might not have what you need in a specific situation. That’s when you start problem solving and get creative. I once realized I forgot to pack both my pump clip and leg strap pump holder while wearing a summer dress. Using a rubber band and hair tie, I somehow managed to secure my pump under my dress. Or while on vacation, I realized I didn’t bring extra tape for the sensor that was about to peel off. I found a first aid kit and used the band aids to hold it in place. Sometimes, you just need to think out of the box when the unexpected strikes.

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.

 

 

 

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 1- Message

Today’s blog topic: What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? 

One of the many reasons why I love Diabetes Blog Week is because it’s a chance to see and read all the different diabetes blogs all in one place. Every year I’m excited to see new diabetes bloggers as well as catch up with the blogs I’ve been following for some time.

Last year there were over 150 bloggers who participated. One hundred and fifty people of different ages, different years of living with diabetes, some have it themselves, some care for others who do. Everyone wrote something personal and unique to them, yet we all have one thing in common. We are all living with or caring for someone with diabetes.

I think the message that is most important to me is that even though we are all in this together and we all have something in common, we each have our own experiences and stories to tell. No two people with diabetes are the exactly the same. Our bodies react differently, our approaches to food and exercise may differ, our strategies to cope are unique to us. And that’s okay. Diabetes is a complicated disease and how we manage it is distinct to each of us. And if someone does something differently, it’s not our job to pass judgment or tell them that what they’re doing is wrong. Our job isn’t to blame or criticize. Our job is to accept and encourage everyone. Because while our journeys may be different, our destinations are the same as we all hope for a cure and a long and healthy life.

Read other blogger’s response to this post here.