Lessons from Levi

My foster dog Levi and I spend a lot of time together. Since I work from home, he’s constantly curled up next to me, usually sleeping while I’m working. They say that owners and their pets sometimes start to resemble one another over time. I’d definitely say that’s been true of Levi and I.

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There’s a lot we can learn from our pets. In fact, I found a great list on Huffington Post of what dogs can teach us about what matters most. They remind us to live in the moment, to not hold grudges, to be loyal and dependable, and to love unconditionally.

Yesterday though, I found myself imitating Levi in a completely different way.

It was after my bootcamp class. My blood sugar was on the rise, but this was to be expected since this particular fitness class always seems to raise my blood sugar an hour later. Anticipating this rise, I had given a few units of insulin once class ended. I ate dinner, giving another bolus. But it was as if I was delivering water instead of insulin, it wasn’t doing anything to stop my rapidly rising blood sugar! By 9:30 pm I found myself staring at a staggeringly high number, the highest I’ve seen in a very very long time. I changed my infusion set and gave a correction through an injection.

At this point in the night, I was feeling truly miserable. I was thirsty, nauseous, my body and head ached, my brain felt foggy. But it was the end of the night and I had to take Levi out before bed.

LeviDance.gifThat’s when I realized that Levi was doing exactly what I needed to be doing! Tonight, I would channel my inner dog and follow Levi’s example.

Excited to be outside, Levi started pulling me to walk faster. Alright I got it, we’ll pick up the pace! Exercise, including walking, can be beneficial in lowering blood sugar. Great thinking, Levi.

While on our walk, Levi kept stopping to sniff and pee every 10 feet. While stopping so often on a walk is annoying, frequent urination to flush out your system is important when dealing with high blood sugars or even small amounts of ketones. Smart thinking again, Levi.LeviDrink.gif

When Levi finally finished emptying his bladder and marking every pole we passed, we went back inside. Levi made a dash straight for his water dish, lapping up the entire bowl. Drinking lots of water! This can help the kidneys flush out the extra glucose in the blood. Great and important advice, Levi!

I checked my blood sugar again, finally it was coming down! The rapidly dropping arrows confirmed that I was trending in the right direction and I was starting to feel a little bit better.

With the worst behind me, I followed Levi’s lead one last time that night.

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By 12:30 am, my blood sugar was back to normal. Thanks for all the lessons, Levi!

 

Foster dog and self-care

My family is a dog family. My whole life, we’ve always had a pet dog, the same breed actually- a soft coated wheaten terrier. But with a family pet, the responsibility was shared amongst everyone in the family, often mostly falling on my parents. Besides family vacations, you could always count on at least one person being around to take care of the dog. The care of a family dog rarely rested solely on one person.

Working full time at home, I thought it would be a perfect opportunity to become a foster home for a dog. Basically I would be giving a dog a much needed break from the often stressful shelter, and in exchange, he would keep me company.

So this is Levi. And he’s been great! But this is the first time in my life that another living being is fully dependent on me and my care of him. He’s not a family pet, he’s solely my responsibility. And while he’s pretty low maintenance and independent and is still a dog and not a human baby for example, taking care of Levi has made me more aware of taking care of my own needs and my diabetes.

If you’ve ever been on a plane, you know that if in an emergency, you secure your own oxygen mask before assisting others, including children. When you’ve constantly put the needs of your children before your own, this may at first seem like a selfish act, but the truth is, you can’t be there for others if you don’t take care of yourself first.

So here’s the situation. Levi is anxious to get outside, it’s clear that he needs to go to the bathroom. I live upstairs so to take him out means bundling up for the cold, putting on the leash, and walking around the apartment complex until hes done his business. Sometimes this is a quick process, other times not so much. Levi is making his needs very clear and as his caretaker, he’s dependent on me. But at this exact moment, my blood sugar is crashing. I’m shaking, lightheaded, feeling weak. I quickly take some fruit snacks, but they still take 10-15 minutes to work before I feel better. Do I make Levi wait?

This situation is new to me. But I know it will be common place in my future when I have kids of my own. As a parent, you often put your children’s needs before your own. But as caring for Levi is showing me, sometimes you have to put your oxygen mask on first. So I made Levi wait until I felt well enough to walk outside with him. After all, how can I care for him if I pass out from low blood sugar?

Self-care isn’t selfish. This phrase first struck me because although I completely agree, I realized that we are often made to feel guilty for taking the time to take care of ourselves. It can be seen as indulgent or a luxury. But self-care is essential. When you don’t take the time to care for yourself and your own needs, what you do give to others is less than your best. You run on empty, emotionally and physically. When you take care of yourself, you are better able to take care of others.

As I write this post on #SelfCareSunday in the second week of January, a time when New Year’s resolutions are fresh in people’s minds, I encourage you to think about your own self-care, and what you can do for yourself that will in turn, help you better serve others.

I wish I had told you

Last weekend I traveled to Chicago with about 20 other people to volunteer with an organization called Project S.N.A.P at the JDRF walks. I’ve been volunteering with Project S.N.A.P at this walk for around 5 years at the same location in Palos Hills. I’ve talked about what Project S.N.A.P does in other posts so instead I want to focus on something that I observed this year. The people.

img_2755There were more of them! This year was probably the biggest crowd of people at the walk I’ve seen in years. It was a nice day, a little cloudy but warm for October so that always helps. I have mixed feelings about the event being bigger. If it was bigger because more support people, more friends and family members came together to support JDRF and their person with diabetes, then I love that the event is growing! But if it’s getting bigger because more people are being diagnosed with type 1 diabetes, well, then that just makes me sad.

At this walk, there was a special tent for newly diagnosed families where the T1D person and their family members were given blue bandanas to wear. This made it pretty easy to tell if there were newly diagnosed people at the walk. I scanned the crowd, and sure enough I found a handful of blue bandanas.

This event can be emotional. You can hear it in the voices of the parents when their eyes fill with tears as they talk about their son or daughter they’re fundraising for and the hope for a cure. When I see newly diagnosed kids and their families, I just want to go up and give them a big hug. Tell them that everything will be okay.

I recently gave a guest talk in an undergraduate psychology class during their unit on stress and chronic conditions. I talked all about the relationship between type 1 diabetes and stress. When I got finished with my talk, I opened it up for questions. The students asked a lot of thoughtful questions. One student asked, “If you could go back in time, what would you tell your 12 year old self?” (12 was the age that I was diagnosed at).

I would tell my 12 year old self the same thing that I wish I could have told all the newly diagnosed kids and their families. I would tell them, don’t ever let your diabetes hold you back from doing something you want to do. You can find a way. I would tell myself how I was able to study abroad for 6 months, to travel the world, to jump out of a plane and snorkel in the Great Barrier Reef. I would tell them that you are not defined by a number. That there will be a lot of numbers in your future, blood sugar numbers, A1c numbers, and those numbers can be frustrating and discouraging, but you are so much more than those numbers! And finally I would tell them that having diabetes sucks, but that you will be a stronger person because of it.

I didn’t get to say all of this to those newly diagnosed at the walk, but I’m saying it now. And hopefully, they or anyone else newly diagnosed will not only read this, but believe it.

 

Disconnected

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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.

 

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.