Monday, July 22, 2019

Friends For Life Orlando 2019


FFL green and orange wristband art by mom.

I’ll start off my blog post with the caption I wrote on my Instagram post this morning.

“Friends For Life feels like coming back home every summer and getting to see your family from far away after a long time apart. Giant family reunion. These people have such a special place in my heart and I’ve felt surrounded by so much love the last few days. And getting to meet new friends, and friends I’ve been talking to online for ages was so exciting. @cwdiabetes gives us the biggest gift of all and I will be thankful for them forever. I’ll get some more thoughts together for a blog post but for now, I’m leaving FFL with my eyes teary but my heart full 💚”



For those of you reading this who are hearing about Friends For Life for the first time, it’s a conference put on by Children With Diabetes. I’m talking about the Orlando one, which is absolutely HUGE, with over 2000 people, all who either have Type 1 (we wear green wristbands) or love someone with Type 1 (they wear orange wristbands). There are such fun programs for kids, tweens, and teens with amazing staff, and all kinds of sessions for the adults during the day. Some examples of the variety of sessions this year: “Diabetes Technology Update”, “Language Matters”, “How to DIY Loop”, “Avoiding and Overcoming Diabetes Burnout”... There are so many great sessions going on that it’s a challenge to choose which one to go to in each time slot!

This year, because of the bad timing of my open heart surgery, we didn’t think we’d make it to Friends for Life at all. Well, in the best plot twist, we did! We got there late. And 30 minutes before the session where I was going to speak on a panel! Just in the knick of time.

I had the pleasure of being on a panel discussing “Finding Your Tribe: Support & Knowledge in Social Media” with some of my favourite people; Kerri Sparling, Scott Johnson, Mary Lucas, and Cherise Shockley. We talked about all things from Instagram, Twitter, Facebook, and blogs, to Doreen, hashtags, the evolution of our online community. It was a really cool discussion and I’m planning on writing a more detailed post about it, so keep your eyes peeled.

Sitting on the panel with Cherise and Mary.

There is a team at Friends for Life that works really hard on figuring out what meals they’re going to serve us, and figuring out the nutrition facts of every single item so they can lay out how many carbs are in each thing and no one has to figure it out for themselves! It’s great for us adults, but also so nice for all the T1D parents who have to do all the carb counting for their kids! No guessing games. I think seeing the carb counts on the buffet is something every family there gets giddy about. All thanks to the nutrition team.



Then we have the exhibit hall, where different diabetes companies, organizations, research teams, and shops set up at booths. And let me tell you, it’s HUGE. There are also so many fun activities for the kids. From claw machines where you could win fun prizes at the Dexcom booth, to face painting, Mickey ear decorating, snow cone stations, ... half the fun is seeing all the kids running around having the time of their lives! Some of the bigger booths were companies Dexcom, Lilly, Omnipod, Tandem, Novo Nordisk. Then we had some amazing organizations there like Beyond Type 1, Diabulimia Helpline, and Padre Foundation, who are doing such important work! I was especially happy to see the Diabulimia Helpline booth, a booth dedicated to mental health, which was something new there and something that I think so many people need but are quiet about needing. Then of course we had our fun shops like Myabetic, A Tad Too Sweet, Pump Peelz, and Sugar Medical. Honestly, this is just a very tiny peek into what that exhibit hall holds. I wish I could name every booth that was in there because there were some really interesting things!



As you can tell, with all these things going on, everyone is running around trying to get somewhere all the time! So it’s so nice to have parties at night where we can all just let loose and have fun together, spend quality time, and of course eat good food. This year we had a family fun beach party, an adult party of the decades, family movie night, and of course the banquet which was a ball this year for the 20th anniversary. Fancy dresses and suits everywhere!


But what is at the core of this conference, what is in its essence, is love. It’s unconditional understanding of one another. It’s joy everywhere you look. It’s treating everyone there as if they were part of your own family. Because no T1D family leaves another T1D on their own. It’s tears of joy, and tears of relief, because you’re finally among a sea of people who understand your struggle. It’s feelings of pride, looking around you in awe seeing all these amazing and special people, and realizing that you’re one of them too.

Friends For Life is a gift that keeps on giving. Because the friendships and bonds formed last far longer than imaginable, and the lessons you take with you will stay with you for the rest of your life and maybe even change the way you live.

It’s so much more than just a conference. In a sea of green and orange bracelets, you will find a home.



Until next year, FFL Orlando. 

Thursday, July 11, 2019

Back From My Unintentional Break

Hi all,

It feels good to be back! On May 31st, I had emergency open heart surgery to remove a large blood clot from my right atrium. I'll definitely write about it but it's taking me a long time to get those words together. And well, it's quite the long story.  So that kind of knocked me off my feet for a while. But I'm back with what I feel like is a whole new perspective on life in general.

I wrote this in my Notes app in my phone a couple of weeks after surgery; "Something about having emergency open heart surgery makes you come to a screeching halt to re-evaluate your life."

I feel like it's impossible to go through something like that and not feel changed in some way. I'm not sure exactly how I'm changed, but I knew as soon as I was coherent enough after my surgery that life would not be the same from here on out. I was going to leave anything I was doing that was causing any stress or unhappiness in the past. I was going to live with purpose. I was going to be a better human. I was going to be a better friend.

Where am I now? Still trying to figure this all out. I've definitely taken a step back from some aspects of social media that I feel were unhealthy for me. What purpose am I living with? Haven't quite nailed that down yet. But I know I will, and it feels like I didn't get through all that just to merely "survive" through life, I got through it so I could LIVE. How am I going to be a better human? I think that we can all always try to be a better human. That growth is never ending. And as long as you acknowledge that you have room to grow and are willing to open up your mind and learn, you'll always have space to become a better human. So that goal is never ending, but I am definitely actively thinking about it more. How am I going to be a better friend? I haven't done as much of this as I would have liked to by now. Recovery has been slow and I feel like I've been an absent friend, far too quiet, which I felt like I was before too. I want to muster up the energy that I don't feel like I have, and be a friend who checks in. A friend who reminds the people close to me how special they are. A friend who lifts them up.

So, that is where my head is at. Actually, it's just a really small part of where my head is at, because let me tell you, it's EVERYWHERE. I have so much to figure out, but the good news is... I have time :)




Thursday, April 4, 2019

Life With Diabetes Is a Seesaw





You’re on a seesaw. And somehow, you have to keep it straight. All. The. Time. Let it go too far one way, and you’re facing your own mortality. Let it go too far the other way, and you’re staring death in the eyes. But there’s a catch. You can’t get off the seesaw. You’re glued to the seesaw. Even if you get exhausted from the energy it’s taking to keep it straight and you feel like you can’t do it anymore, you can’t get off the seesaw. This is life with Type 1 Diabetes.





Above we’ve got a picture of two items; the two life-savers of Type 1 Diabetes. Each of these items is crucial in surviving Type 1 Diabetes. Blood sugar too high? Insulin. Blood sugar too low? Sugar/Carbs. And if we didn’t have either? Well then we wouldn’t be here to tell you about it!

Imagine each of these on a scale trying to balance each other out. That’s pretty much a day in the life of diabetes. Life is constantly trying to regulate your blood sugar with these two things. And there is no science to it. Because your blood sugar WILL go too high. It’s inevitable. And when it does, you need to give yourself some insulin. Insulin is liquid gold to us because before the invention of insulin, Type 1 Diabetes was a death sentence. Juice or other sugary things, aren’t as hard to come by. But! Are essentially equally as important. Because it’s impossible to calculate the right dose of insulin all the time. Sometimes there is no science to it, no rhyme or reason, and no matter how hard you try to give the perfect amount, it’s not possible. So if you don’t give the right amount one of two things happen. One being, your blood sugar goes low because you gave yourself too much. Second being, your blood sugar stays high or goes high because you didn’t give yourself enough. And at that point, you go back to the drawing board- insulin or juice.

So we use insulin and carbs to try to balance our seesaw. And it takes perseverance! Because there is no way to avoid getting tired of trying to maintain this balance... even the strongest of the strong would get tired! And this balance is impossible to perfectly maintain. It’s tiring and it’s exhausting, but people with Type 1 don’t have a choice. We are seesaw masters. It’s a talent, really. So be proud of your seesaw. Your seesaw is beautifully imperfect, but so much blood, sweat, and tears have gone into your seesaw. Your seesaw is built on strength.


Sunday, March 10, 2019

Vial Safe Insulin Protectors

A few weeks ago I posted on my Instagram about a broken bottle of Lantus. I talked about how I’ve dropped my insulin bottles so many times and they’ve never broken on our wood floor, but that day I wasn’t so lucky. I knocked over my case with my insulin and syringes in it and my Lantus rolled off the table onto the floor. I picked it up and put it back in my case like I usually do. Until I realized that the whole kitchen was starting to smell like insulin. Low and behold my bottle was broken! After that I said that I think the feeling of breaking an insulin bottle is the diabetic adult equivalent of dropping your ice cream on the floor as a child. Or losing a balloon.

So after I posted about it, I got an influx of comments... where a slew of people were telling me the exact same thing; that I needed to get a Vial Safe ! I was obviously late to a party I didn’t know about. But I was a bit skeptical. I wasn’t sure how an insulin bottle cover could be so exciting?


This past Monday my Vial Safe came in the mail. They were super easy to put on, and they came in different sizes for my Humalog and my Lantus! They came just in time, because I was headed on a trip. So I got to test them out while traveling, and I can safely say I fell in love. For more reasons than it’s purpose which is no more broken bottles! One of which is that I love the grip it gives me when I’m filling my syringes. I didn’t even realize how slippy and slidy it felt until I filled it with one of these on. Game changer.



 

I highly recommend Vial Safe, just like all the people who felt compelled to recommend it to me! Why even risk the possibility of breaking a bottle of life-saving liquid gold? No thank you!

If you’re so inclined to grab one for yourself, you can find them HERE. Use the code Michelle20 to save 20%.




Monday, February 4, 2019

The Very Real Fear of Lows

Low-phobia
[lo-fo-bee-uh]
noun
1. An excessive fear of low blood sugars in a person with diabetes. This may cause them to do questionable things to avoid letting their blood sugar go low.
Example: Michelle’s blood sugar was perfect before going to bed, but her low-phobia kicked in so she ate unnecessarily to raise her blood sugar.




Okay, I admit it. My name is Michelle and I’m a low-phobic. I have an uncontrollable fear of my blood sugar being low. Why, you ask? Well, like most phobias, it doesn’t always have a clear answer. Could it be because I hate the shaky feeling I get as my blood sugar starts to dip? That I can’t stand the weakness I feel when my numbers teeter down? I don’t know. But for some reason, when I see my numbers trending down, I automatically feel the need to correct it. Even if admittedly, it might not really need correcting. At all. So I say ‘oops’. Over and over again... and never quite learn my lesson.

So what are some things I do because of my fear of going low? Well, I don’t go to bed unless my blood sugar is over a certain number. I run my blood sugars higher than average on purpose so that I don’t come close to going low. If the worst happens, and my blood sugar does go low, I eat just about everything in sight. I don’t have it in me to eat 15 fast-acting carbs and then wait 15 minutes and “wait and see” if it went up enough like we’re supposed to. Nope. If it was in edible and in sight 5 minutes ago, it is now in my stomach.

And sometimes this is where a rollercoaster begins. A yo-yo, so to speak. Because I overtreated my low, my blood sugar goes really high. So I frantically give myself insulin to fix the damage and bring it down. But then... I start teetering toward that uncomfortable level again that is just a little too low for my liking. So I think to myself that I better eat something to prevent it from really going low again. But alas... I didn’t need to eat anything. And high my blood sugar goes once again.

So that is the day in the life of someone with a word I’ve completely made up, ‘low-phobia’.

Do you relate to this? Do you suffer from low-phobia? What are your tricks to fight the fear? I’d love to hear.

Monday, January 21, 2019

To Anyone Going Through Diabetes Burnout...



What is “diabetes burnout”? Burnout is something that occurs when you feel like you just don’t have it in you to do all the little things that diabetes requires to take care of yourself. We have to remember, Diabetes is an all-encompassing illness. It affects every part of every day and there are consequences if you get distracted from it. You have to be on top of things 24/7, 365 days a year, and there’s nowhere to hide from it. With burnout, the attention life with T1D demands becomes too much. You don’t feel like taking care of yourself, and you really just want to ignore your diabetes and pretend it doesn’t exist.


You might be dealing with burnout if:



  • You feel like Diabetes is controlling your life.
  • You feel angry a lot of the time about having to deal with Diabetes.
  • You feel overwhelmed by life with Diabetes.
  • You’re avoiding parts of your care, like seeing your endocrinologist, testing your blood sugar often enough, etc.
  • You’ve stopped really caring about your blood sugars.
  • You feel alone with your Diabetes and like no one understands.
  • You worry about the consequences of ignoring parts of your care, but you’re too unmotivated to make a change.
  • You feel like you want to give up.
  • You feel stressed out and like nothing you do ends up being right.
  • You don’t want to think about Diabetes, even for a second.


Does this sound like you? Well, you’re not alone. Did you know that the vast majority of people with Type 1, or caregivers of Type 1, deal with burnout at some point?


So to anyone going through Diabetes burnout, the first thing I want to tell you is not to be ashamed. This doesn’t mean you’re weak. It simply means you’ve had to be strong for a long time and you’re tired. It says nothing about your character, because anybody dealing with something that is in the background of EVERYTHING you do will grow tired and frustrated with it. Also, I’m proud of you. Why, you ask? Because this isn’t something that’s easy to go through. And even though it might be painful, day by day, you’re making it through. You are a fighter whether you like it or not. Your bad days are not signs of weakness. Those are actually the days where you’re fighting your hardest. Know that you will get through this period of struggle, even though it might be hard. People with Type 1 are forced to learn to be strong. But I also believe that they are innately born with a certain strength. So when you feel your weakest, and you feel like you’re at your wit’s end, know that it’s okay to rest. It’s okay to allow yourself to feel all the feelings that might come your way. It’s okay to ask for help. It’s okay to lean on the people around you. We all need a break sometimes. But also know that that fighting spirit will remain somewhere inside you. And when you’re ready, you will bounce back, and come back with even more tenacity than before.








Sunday, December 16, 2018

A Patient’s Perspective: What Makes a Good Doctor?




I’m sure if you asked a handful of people what makes a good doctor, everyone would have a different answer for you. Over the last 5 years, I’ve happened to see more doctors than most see in a lifetime. And let me tell you... there are some really special doctors out there who truly found their calling in life. And then there are some who seem like they may have chosen the wrong profession.


My simple answer to the question, “What makes a good doctor?”, is collaboration.


Some of us have pretty confusing medical issues and it becomes frustrating for both us, and the doctor, when no one is quite sure what to do. When I’m confronted with a doctor who isn’t willing to listen to my thoughts, my opinions, and my complaints, I feel completely shut out. All of the sudden they’ve become the dictator of MY body. And that’s not a good feeling. There’s a quote that goes around that says something like, “Yes, you had a two hour lecture on my condition. But I’ve spent 10 years living with it.”


And this is where the collaboration comes in. The doctors I’ve met that I honestly admire truly want to understand you as a person, and understand what is important to you in your care so that they can help you. I’ve found very few doctors like this, but when I have, I’ve breathed the biggest sigh of relief. They see you as a whole person, a whole entity, and not just another chart.


So I know I’m just a measly patient, but if any open minded doctors out there happen to read this and want to know how to possibly better help some of their patients, here is my advice.


1. Keep an open mind. We are very aware that we are not doctors or medical professionals, but we spend more time on our case than any medical professional has time for. Maybe we have ideas that could genuinely work for us, ideas of tests that could be run, ideas of treatment strategies, ideas of aids that could potentially improve our quality of life. Don’t be closed off to our input just because we’re not the doctor. We know we’re not the doctor. But you are, and you have our life, and our comfort in your hands. COLLABORATE. 


2. Don’t tell us “never to Google”. As a patient, again, we have a lot more time to spend on our own cases than you do. And we understand that. Doctors are overloaded and busy as can be! But demeaning a patient for using Google to do their own research is not okay. No patient should be made to feel embarrassed for researching their illness or researching treatment options. And if we bring a paper to you and you say it’s not from a reputable website, okay, we understand. But if it is from a true, primed and published study, please have a look. We aren’t trying to complicate things. We are only trying to better our quality of life. If we come in asking if it’s possible that we have “so and so disease”, and that that’s what could be causing our misery, don’t laugh at us or brush us off. Listen to our reasoning and consider it. Once in a while we may just be right. COLLABORATE. 


3. DO expect us to do our part. If you recommend something and we agree to it, such as physical therapy, taking a certain medication prescribed, trying to cut out a certain food group, etc, then we absolutely should try what we agreed to. If you are genuinely trying to help us and have ideas, we need to do the same thing with you; COLLABORATE. 


4. When we tell you about issues we are having, please don’t brush them off. It may seem like a minor issue to you, but it’s something that we have to deal with everyday. Maybe if you dig deep you can think of an explanation for this symptom, or something that can bring us some relief. We know you have a lot on your mind, but we’re relying on you. COLLABORATE. 


 5. Realize how much power you have. We tell ourselves that you’re “just a person”, but in reality, you’re more than just a person. You’re someone who holds our comfort, our quality of life, and our future in your hands. And again, we realize you hold many of these lives in your hands, and that it can all get a bit much. Individuals can start seeming like less of a big deal in the big mix of things. But to us, you’re the ONE person who can help us. You have the power to better our lives. COLLABORATE.


 6. Know that although you went through intensive years of medical school, we are the ones living in our bodies. We can do our best to describe what we feel, but only we can really feel it. So BELIEVE us when we tell you something is happening in our body. Know that we have lived in our bodies our whole lives, and when something doesn’t feel right, we know. Don’t let patients slip through the cracks because they might “seem” healthy to you based on initial tests. See them for their suffering. See them for the things they dream of doing if you can help them. COLLABORATE. 


When we work together and really listen to each other, that’s where the magic happens.