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.

 

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.

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.

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But my blood sugar was high and rising fast.

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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.

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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.

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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.

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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.

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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!

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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.

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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.

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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.

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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.

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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.

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

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

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!

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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?

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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.

Can I have a re-do?

I often dread my endocrinologist appointments. But at the same time, I’m thankful for the 4 appointments each year. They’re forced moments of reflection, confrontation, and adjustment. Before each appointment, I consider how things are going. I know if the past 3 months have been good or bad. If it hasn’t been a good 3 months, it’s a time to confront myself and delve into why my numbers have been high or low or just all over the place. Sometimes it’s my own self-management habits that have slipped, other times it’s factors that are out of my control like getting sick. Then based on how things are going, I make adjustments along with my doctor and move forward.

Today was one of those appointments that I just wanted to get over with. The past month and a half has been rough. My numbers have been running high consistently. Between getting a pretty horrible cold that lingered, having to go on steroids for the sickness, stress from a breakup, adjusting to time changes of traveling, and then just a weird couple weeks where it seemed like my insulin wasn’t working as it normally does, I knew my doctor would be looking at some pretty awful numbers at our appointment.

Part of me is disappointed. I don’t like to be this off track. I don’t like knowing that I’m potentially doing lasting damage to my body, that I’m increasing my risk of complications. But I also know that life happens. There’s a lot that I can’t control and those events may unfortunately impact my health by way of my blood sugar. All I can do is my best to try to manage the consequences.

Diabetes is a chronic disease. It means that as of right now, I’m stuck with it for the long haul, it’s not going anywhere. And as much as I get caught up in these mini 3 month sprints between appointments, there’s a bigger picture. Three months is not very long when you look at a lifetime. And shit happens. There will be highs and lows in life just as there are in my blood sugar. I admit, I’ve had other things on my mind lately besides my diabetes and I’m sure that’s played a part. But I can’t control everything that happens, at some some point you have to let go and just do the best you can within your circumstances.

So yea, I’m not thrilled about this appointment and the past few months. But unfortunately there’s no re-do’s or rewinds with a chronic condition. What’s done is done. Now, I’m putting aside my excuses and focusing on moving forward.

 

The Teenage Tree of Trust

Being a teenager is hard. Being a teenager with type 1 diabetes…well, it has its own challenges.

A couple of weekends ago I had the opportunity to volunteer as part of my local JDRF’s Teen Carnival. The event brought together about 42 teens with type 1 diabetes and their parents to encourage an open dialogue about their management of their diabetes.

The teens and the parents were broken up into separate rooms. The teens were given questions to discuss about their parents while the parents answered questions about their teens. The exercise was called the Tree of Trust. Answers were written anonymously on “leaves” and then hung on the tree for everyone to read. After the separate conversations, the parents and teens were brought back together. A local pediatric endocrinologist summarized the responses from both the parents and teens and provided recommendations based on his years of experience working with teens and adults in his practice, highlighting themes that were expressed during the session.

IMG_9686It was powerful to hear both the teen and parent perspective. Parents were reminded about the importance of giving their teen independence and not to be so quick to anger or blame when things don’t go well, while teens learned the importance of honest and open communication with their parents, even when they make mistakes.  As I looked around the room from the back row where I sat, I saw parents and teens exchange knowing looks and sly smiles as different topics related to them and their relationship. While it’s challenging to manage your diabetes as a teen, everyone in the room had already taken a great step in the right direction just by being there and listening.

I was a moderator in the teen room and sat at a table with another moderator and 4 teens. As we talked about each of the questions, I was struck by how similar my struggles were as a teen. I remember the challenges of trying to fit in with my peers when my diabetes set me apart, of trying to be independent, and having so much to think about at all times.

I didn’t have the opportunity to participate in a program like the Tree of Trust when I was a teen. I think I had pretty good communication with my parents as a teen, but it still would have been an interesting exercise to go through together. Well since I can’t travel back in time, I decided to go through and answer the questions now, as a 27 year old, remembering my years as a teenager. I sent my mom a sampling of the questions that were asked at the session and had her answer them also.

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Questions for the Teen

(so these are my responses about my parents, thinking back to when I was a teenager)

1. What do we do well as parents and what do we do with your T1d care that is successful? (I combined two questions since they’re so closely related).

You’ve done an amazing job since the day I was diagnosed of teaching me that I am not my diabetes, and that I can do anything I want to do even with my diabetes. You encouraged me to play sports, to go away to camp, to travel (and years later to study abroad), and just be myself. Whatever the situation, you found a way to make it work with my diabetes. This was such a strong message for me as a teen that I internalized growing up. You also allowed me to be independent while still being a concerned parent. You helped me when I needed help, but you encouraged me to take responsibility for myself and my diabetes.

I remember checking my number and shielding the number from you. I think it was because at the time, I wanted my privacy even when it came to my diabetes care. And I appreciate that most of the time you respected that and trusted me to do the right thing. You always just wanted me to be safe and healthy, you never got mad even when I was going through a rough time with trying to get my numbers under control.

2. What can we do differently with your T1D care?

I know that you’re just concerned, but it can be annoying to constantly ask me what my blood sugar number is, or remind me to check my blood sugar or to bolus. Most of the time I have already done it, and if I do miss it, it’s a lesson for me to learn. While I do appreciate the reminders occasionally, they don’t need to happen constantly. I also get annoyed when I say I don’t feel well and the first thing you’ll ask is what my number is. Not everything about my health is related to my diabetes, and usually I can tell the difference between not feeling well from being high or low or there being something else wrong.

 

Question for parents

(these are my mom’s responses about me)

1.What did I do well as a teen and what could I have done differently?

You wanted to be very independent with managing your diabetes from the very beginning which is most positive. Dad helped with the more technical aspects of the pump, ordering insulin etc. I helped with the logistics, wearing the pump in clothing, school lunches etc. I think counting carbs has been a challenge throughout the years.

2. What did I do with my t1d care that bugged you?

Nothing “bugged” me about your own t1d care. (ok, wiping your bloody finger on your case).

3. Why do you not trust us?

I’ve always trusted you. Double checking on t1d care would only be a sign of love and concern when a parent who does not have diabetes cannot “fix” this condition for their beloved child. It is not judgmental in any way. When you have a loving, respectful, trusting relationship, you work through things together.

4. What did I do with my T1D care that was successful?

Accepting with grace, courage, dignity and even humor, this unwanted and challenging aspect of your life. Taking steps in your life to find a way to help others with this same disease and other health issues. Using your gifts of introspection, insight, intelligence and sensitivity that shines through in all you do.

5. What did I do with my T1D care that disappointed you?

Nothing that you did with your t1d care disappointed me. You are, were and will forever be my hero.

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I know how fortunate I am to have parents that have always been there to love, support, encourage, and believe in me in everything I do, including managing my diabetes. Being a teenager with diabetes was definitely challenging at times, but looking back, I can see how everything I went through made me and my relationship with my parents stronger in the end. I hope other teenagers and parents have the opportunity to go through a similar exercise as the Tree of Trust, or take it upon themselves to have a similar conversation.