Disconnected

image

I stared at my CGM, the screen reflecting my own feelings lately. ??? The 3 question marks indicating that the receiver can’t establish a reading from the sensor, that it’s confused, lost…disconnected.

The week leading up to an endo appointment has become a time of reflection. I’m forced to look back on the past 3 months and evaluate how I feel I’ve done with managing my diabetes. At my appointment, my A1c number will give objective evidence to these months, but for now, it’s my own subjective assessment.

I don’t need to see my A1c number to know that the past 3 months have not been great. I see my glucose numbers each day, each hour, each minute. I can’t escape the numbers. But the feeling that I have is hard to describe. Unmotivated? Stuck? Apathetic? No it’s not quite that. It’s more…disconnected.

How do I become disconnected from a chronic disease that I literally think about constantly? From the medical devices that are physically connected to be 24/7? I’m not quite sure. Perhaps it’s just day after day, going through the motions, hoping for different outcomes, disappointed when it’s more of the same.

Maybe I’m burnt out. Maybe I have lost some motivation. Maybe I’m just tired. But after years of going to each appointment with the same goal and continuously falling short, something has to change.

But change takes work and it’s hard. Maybe it’s changing what I eat to avoid blood sugar spikes. But I love food, I don’t want to change. Maybe it’s being better about carb counting and bolusing on time, but I’ve tried, how is this time going to be different? Maybe it’s asking about the use of drugs for type 2 that have been shown to help type 1s, but I’m nervous about the side effects and using drugs that haven’t been well studied for type 1s. But most of all, maybe I’m afraid of failing. Because what if I try, like really try, and I still find myself in this same spot 3 months from now? What does that mean for my future? What does it mean when I’m ready to start a family and need to get my A1c much lower than where it is now? What if I can’t do it?

I know that I can’t let fear hold me back, I know that I can’t be afraid to try. And that “failing” isn’t really failing at all, it is just a lesson on what will work for me and what won’t, all ultimately getting me closer to my goal.

Hopefully my endo can help me rebuild these connections and face my fears. All I know is that I won’t succeed unless I’m willing to try.

What my diabetes has taught me about life’s rough patches

There will be good days and there will be bad days. It’s inevitable. And it’s okay. The bad days are what help you appreciate the good ones.

Tomorrow is a new day. Each day is an opportunity to start over, to begin fresh. Yes, it may not be any better than the day before, but the positive potential is there. A day of bad blood sugars today doesn’t mean tomorrow will be bad too.

Some things are just out of your control. I can’t account for every high and low blood sugar, I can do everything “right” and it still in unpredictable. Same with life’s events. Some things you can’t control, but what you can control is your response and how you cope with it.

To feel better often takes effort. I’ve gone through burn out with my diabetes, where I just wanted to ignore it. To stop carb counting, bolusing, monitoring what I’m eating, stop thinking and just live. But you can’t, because you end up feeling worse. Rough patches will pass with time, but you don’t want to be stuck in a downward spiral of self-wallowing and unhealthy behaviors. Reaching out to others, getting enough sleep, getting out of the house and not eating only junk foods can help keep you from sinking further into despair.

Some things in life aren’t fair. They’re just not. And they suck. You can get angry or sad or frustrated. But at some point you have to accept it and move on the best you can. It’s not fair that I have an expensive, complicated, incurable chronic disease, but I do and life goes on.

People won’t always understand what you’re going through or know how to help.  Some people will try to help and be there for you, some people will say things that make you mad, some people will be ignorant. But most people have good intentions. If you need support, you can’t assume people know what to do or say. You need to be explicit.

There’s no quick fix. It takes time. It takes effort. It’s a life long process. Every single day with type 1 diabetes requires vigilance and care. There will continually be challenges and low points in life and while you can learn positive ways to cope, to be resilient, you can’t just snap your fingers and instantly feel better.

Your feelings are valid. We all have different responses to life’s events. Your response may be different than someone going through the same thing, but what you’re feeling is completely acceptable and normal. Own your experiences and your emotions and use them to fuel positive action.

You’ll get through this. You’re strong. You’ve made it through life’s challenges before. Yea, it may have been hard, you may have struggled and even failed. You may have needed help. There may have been tears. But you persevered. And you’ll get through this too.

 

Stepping it up

Last week I was on vacation in California. I had the best time visiting family and friends in LA and San Francisco. We hiked, went to the beach, did a studio tour, I biked across the Golden Gate Bridge, laid in the sun in Dolores Park, did lots of walking and even more eating. It was perfect.

IMG_2293And so were my blood sugars for the most part.

I wish I could say that I’m not surprised, but that would be lying. While I tried to control my portions I did partake in multiple ice cream outings, doughnuts, even a beignet flight. I guess my carb counting could have been spot on, but I don’t think that was it. I have to say the biggest difference was all the walking throughout the day.

I work a desk job. That means for basically 8 hours of the day, I am sitting. Sure I get up to take breaks and maybe even a walk during lunch, but nothing like the walking I did on vacation. And even though I carb count and give insulin for my meals at work, I definitely see more dramatic spikes in my numbers while I’m working.

In a study called, Lowering Physical Activity Impairs Glycemic Control in Healthy Volunteers, published in Medicine and Science in Sports and Exercise, researches took a group of healthy, active adults and first had them behave as they normally would, exercising for 30 minutes a day and totaling around 10,000 steps per day. During this time, the volunteers’ blood sugars did not spike after meals. Then for the second half of the experiment, the researches told them to stop exercising and decrease their daily steps to below 5,000, keeping their meals the same as the first half. The results confirmed the researchers’ suspicions: the volunteers blood sugars spiked significantly after meals, with peaks rising by 26% compared to the active days. Research has tied these spikes in blood sugar to the development of both heart disease and type 2 diabetes.

While I consider myself a healthy, active person, I know having type 1 diabetes means that my body behaves slightly different than someone without, but the science is there. Being active throughout the day helps stabilize blood sugars.

So what can I do besides quitting my desk job and getting a job that requires walking? Well there are some simple steps (haha get it) that you can take to be more active during the work day.

Go for a walking meeting or take a phone call while you walk. My workplace is great about this, my coworker and I do our 30 minute one-on-one check-ins while walking through the neighborhoods. But take the opportunity to walk and talk whenever you can.

Take the stairs. Everyone says it, but it’s true. Taking the stairs instead of the elevator can gradually add up, especially if you’re going more than a couple flights.

Use your lunch break for a walk. Going for a walk midday or during that 3 pm slump can also help you refocus and re-energize.

IMG_2371Invest in office fitness equipment. You don’t have to necessarily buy a treadmill desk or a bike desk, there are some smaller and cheaper options available. I have a little foot pedal machine that fits under my desk that occasionally I’ll use. Keep a set of light weights nearby and do some curls during a meeting.

I know that even doing all of the above things won’t be the same as walking throughout the day, but at least the intention is there. And making a conscious effort to be active when you can is a huge step in the right direction.

More evidence that moving throughout the day can help with blood sugars:

Balancing bouquets and blood sugar

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

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

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

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

Brain Battle

Our brains are constantly looking for heuristics and shortcuts. We take in so much information every second that we need a fast and efficient way to make sense of the world around us. We use categories and stereotypes to help us understand what we see and what we’re experiencing. So we end up telling ourselves stories to explain phenomenon. Many times we’re correct, but sometimes these assumptions are wrong.

Can you think of a time you saw something that maybe you didn’t understand and made up an explanation or jumped to a conclusion?

I’m guilty of it, we all are. But the thing is, it can be damaging. Maybe a person was having a bad day and made one off comment and now you assume that the person is always rude. So now you’re doing the person a disservice by judging them based on one comment when in reality, they could be a super nice person.

There are so many reasons for a single action.

Having type 1 diabetes, I feel like I’m constantly defending myself against stereotypes and people’s assumptions.

“Do you want dessert?”

“No thanks.”

Why did I say no? There’s a million reasons why I may have said no. But because I have diabetes most people’s first assumption is it’s because I can’t or shouldn’t eat it. I can’t be too mad, that’s their brain trying to make sense of the situation. Besides close friends and family or people who know someone with T1d, when they hear “diabetes” they think sugar=bad. They’re not trying to be rude when they respond “Oh sorry, I forgot you can’t eat that.”

Cue deep breaths.

Most of the time, that’s not why I say no. Usually it’s because I’m trying to eat healthier and one way that I’ve chosen to do that is to cut down on sweets. Sometimes I say no because I’m too full. Or my stomach hurts. Or I don’t like that dessert. Or I just don’t want it. Occasionally it’s because my blood sugar is too high and I probably shouldn’t have it, but that’s the minority.

I’m in a facebook group for a fitness program and was reading a post about a woman who was out with friends and turned down alcohol since it’s not part of the nutrition plan and she’s trying really hard to stick to the plan. She posted how people assumed that because she wasn’t drinking that she must be pregnant.

And that guy who was distracted during your meeting. It’s not that he doesn’t care, maybe he has a lot going on at home that he’s trying to sort through.

All of this is to say, there are many reasons why people do what they do, why they say what they say. I’ve been trying to give people the benefit of the doubt and not jump to conclusions. I fight my brain’s tendency to make snap judgement and instead be open to alternative explanations. I know how annoying it can be to have people make assumptions about me, and so I try not to do it to others. I think this is something that everyone would benefit from if we all decided to second guess our snap judgments and assumptions.

judge

Sweet Sixteen

Today marks 16 years with type 1 diabetes, Sweet Sixteen.

In honor of this day, here are 16 of my favorite sweets from the past year. Yes, I can eat that.

1.This birthday cupcake from my birthday last week.

image

2. This doughnut that looks like a pizza!

image

 

3.  My first visit to Chick-fil-A with a delicious cookies and cream milkshake.image

4. Amazing doughnuts from a local bakery that I brought to my family’s Father’s  Day gathering yesterday.

image

5.  A bacon glazed mini doughnut. Can’t go wrong with bacon.

image

6. Bonuts (biscuit doughnuts) and a biscuit with chocolate gravy, peanut butter, banana jam, and pretzels from Biscuit Love in Nashville.

image

7. Brown butter almond brittle and bramble berry crisp ice cream from Jeni’s Splendid Ice Cream. I dream about this ice cream.

image

8. A seven layer birthday cake. Layers of vanilla cake with whipped chocolate buttercream in between covered in more chocolate and frosting.

image

9. These biscuits with jam from Loveless Cafe in Nashville.

image

10. Holiday cookies that I decorated🙂

image

11. I hosted a popcorn potluck party and people brought the most amazing flavors including Oreo, white chocolate lemon, and puppy chow!

image

12. Monstrous piece of chocolate cake! And plenty of people to help share!image

13. Delicious Thai ice tea flavored Popsicle!

image

14. Went to a local tea shop for a full English tea and had the most amazing scones, macarons, and petit fours. image

15. For the Jewish holiday of Purim, my friend and I made cookie butter filled hamantashens with dark chocolate drizzle and sea salt.image

16. Delicious margarita. Cheers to 16 years. Although hopefully soon there will be a cure and I won’t have many more diaversaries to recognize.

image

 

*Many of the above desserts were shared, eaten over multiple days, or were not finished.

A scary situation (told using bitmojis)

I recently found myself in a very scary situation as a diabetic. Let’s just say that I was about to drive myself to the hospital for my blood sugars, which I’ve never had to do before. Spoiler alert: I didn’t and everything is fine now, but it was still a frustrating and slightly alarming afternoon.

It started at my company picnic. It was a beautiful spring day and I was happy to be outside with my coworkers.

image

But my blood sugar was high and rising fast.

.image

I had bolused for my lunch and figured it would eventually come back down. I was away from my CGM playing frisbee, running to catch it, and figured the activity would probably help lower it too.

image

Not a frisbee, but closest I could find

After playing for close to an hour, I checked my CGM, but instead of my blood sugar going down, it was still going up.

image

I corrected for the high giving more insulin and headed back inside to the office. My CGM started to point downward and I figured I was in the clear.

image

As soon as I got back to my office, I went straight into a meeting. I sat there trying to pay attention to what was being said, but I was starting to feel nauseous and out of it. I felt so sick, I knew something had to be wrong.

image

Luckily the meeting was short and I immediately checked my blood sugar number again, this time it had risen to over 500! I was shocked!

image

I texted my dad and my sister (who is a nurse and soon to be a nurse practitioner) and filled them in. Then I rushed to the bathroom and gave myself a shot and changed my infusion set.

image

I went and told my manager that I had to leave work early. I decided that if in one hour, my blood sugar wasn’t clearly going down, I would drive myself to the hospital. If all the insulin I had been giving wasn’t working, I knew I needed to get help.

image

I got home and checked my ketones, which looked fine. Then I got a large glass of water and laid down on the couch, praying that my blood sugar would start to drop. About a half an hour later, I started to get some good news. And as it continued to fall, I gave my dad and sister a play-by-play.

image

I was slightly bummed that I was missing my weekly bootcamp workout class, but I was just so relieved that my blood sugar was coming down. And as it dropped, I started to feel better physically too.

image

I continued to lay on the couch, taking it easy as I watched my blood sugar fall. Soon it was dropping double arrows fast.  I started to worry that I may have given too much insulin and I was going to crash, which has happened many times before. I just wasn’t in the mood to be caught on a roller coaster of highs and lows.

image

But finally, after about a total of 3 hours later, my blood sugar was almost completely back to normal and I could finally relax.

image

So everything was fine and life went on, but it definitely was an experience that I hope never happens again!

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.