As I walked downstairs on Easter Sunday, I was expecting an Easter basket of sorts. Why else would my parents ask me to delay getting ready when we were already time crunched? Before anything else, my mother said, “Remember that it IS a happy Easter.” They then informed me that my grandfather had passed away. He had been declining in health and while this was not sudden, it was also oh so sudden.
This side of my family is centrally located in the town my father grew up in, so we were with my grandmother all week. Since I’m not currently working I saw some of my family every day. I was going out to eat or eating casseroles all week (all made of chicken and gluten – one of my uncles is allergic to poultry and celiac). I’m telling you this because it was not the best food for me, nor the easiest to bolus for. I was a hawk with my dexcom waiting for the stress and the grief to kick in. I tested my blood sugar next to the dexcom to prove it was wrong. It wasn’t. Apparently my new guardian angel was keeping my blood sugar right where it needed to be. Until we left to go to the wake.
We left the house and I was nearly 500. I gave myself insulin and prayed it would work the way I needed it too. I had been drinking water all day and knew in that moment that this wake would be extra not fun for me. It was in that moment that I envisioned parking myself next to the restroom. (If you’re reading this, and are unaware, high blood sugars make your bladder less efficient. Kind of? I don’t know if that’s the right word.) I found it as soon as we got there, and realized that it was in the least convenient spot in the building. My grandfather grew up in this town, never left, except for his time served overseas in the National Guard, and his children all live in the greater community. He reminds me of George Bailey, and the wake proved this. I would try to walk to the restroom, but had to make it through the whole line first. It was hard. I wanted to talk to the people who were stopping me to give their condolences, and I wanted to say “medically, I need to get to the bathroom!” Within two hours, I was in the low 200s and from there not worried about where my blood sugar was sitting. The urgent need to use the bathroom also decreased and I was a family member at a wake just like the rest of my family.
I remember sitting in a living room after a terrible diabetes weekend trying to find a solution to the worst glucoaster in memory. I remember going through my meter and trying to explain it to a friend. I remember telling him about twitter and the blog and the friends I had made and never met. I then explained how I wanted to keep these two parts of my life separate. I remember the day this friendship ended and booking my flight to meet my first twitter friend.
I remember the day and reason I started my blog. I remember finding blogs and loving the creativity of various names. I remember wanting to share this world with my best friend. No matter how many ways I explained, it never seemed to matter. We had so much in common, but the intensity with which diabetes could come in, and the need for understanding never made sense. I remember feeling completely deflated. How would anyone without diabetes ever understand all of me?
I met these new people with no expectations. I had tried so many different ways to meet people and nothing worked. Kickball, volleyball, watercolor class, etc. Everyone was nice, but no one was looking for friends. So I tried to hide the biggest part of me. (Biggest is not the right word, important isn’t either, but needs-to-be-paid-attention-to is.) Experience had proved that people don’t care. The only people who cared were other people with diabetes (family excluded). And then it happened. My low beyond low, scared of myself and scared for my safety low. They had to know. And yet, they already did. There were pertinent questions and observations and brief comments about the blog. (What?!) How and why were there people who care? And where had they been hiding? There are so many times diabetes briefly comes up in conversation, as though it’s like we’re mentioning the color shirt I’m wearing. But if I bring it up as a deeper topic, they sit and listen. Or if they are about to ask a question and I say “I can’t talk about it yet,” there is so much respect that we literally drop it. Or if we have conversations about weird things that are wrong or different about each of our bodies, and I say “broken organ” and that doesn’t count. A piece of me wanted to yell “how doesn’t that count?!” and the other part me stood there stunned that I am viewed as unbroken. They’re the ones who ask the deep questions and want to understand more. And who I taught to use the glucagon. Because god forbid that needs to be used, someone needs to know. And who to tell my phone to call if help is needed, but not parental help and not 9-1-1. I didn’t know people could care this much. Lies. I did as a child. I didn’t know people in my adult life could care this hard.
I have no idea when (or if) I last filled something like this out. As I was reading others though, I realized it’s a great way to learn about people. Especially people I often only know as their life relates to diabetes. Maybe you can learn some new things about me too.
Four names people call me other than my real name:
Riley…..with a B? where’s the B?
Four jobs I’ve had:
Professional, Summer, Weekend Nanny
Minor League Baseball Cashier
Four movies I’ve watched more than once:
The Sound of Music
Parent Trap (Lindsey Lohan version)
It’s a Wonderful Life
Four books I would recommend:
The Rivals by Johnette Howard
Me Before You by Jojo Moyes
Heaven is for Real by Todd Burpo
Following Atticus by Tom Ryan
Four places I’ve lived:
Plymouth, NH (not technically, but ya know, it counts)
Four places I’ve visited:
Bethel, ME (at this point, it feels like another place I live)
Four things I prefer not to eat:
Four of my favorite foods:
Four TV shows I watch:
Four things I’m looking forward to this year:
Random events planned with friends
Four things I’m always saying:
Want to come to the mountain with me?
Is that a safe choice?
Want to do something on _______ day?
I hope you had fun getting to know me a little bit differently than you usually do
I woke up and that unmistakeable feel of a high filled my mouth.
I changed my pump site and bolused.
I headed to the mountain for courdoroy.
Within 1 run I was low.
I skied off to meet my friends.
I skied and skied and skied and ate lunch and skied and skied and skied.
I finished the day stupid high and bolused.
I went off for a quick errand and couldn’t make it back before feeling low.
I ate more sweet tarts.
I ate more sweet tarts.
I planned my dinner. Had some chips and dip.
Ate more sweet tarts.
Drank orange juice.
Realized getting in the car wasn’t a safe choice.
Had a juice box.
Let my friend in who brought me food since I couldn’t.
in order to learn about a new subject, we ask questions. If it is a knowledge seeking question, the intent (in my experience) can be very positive.
I’ve found lately that people have been asking more specific, pertinent questions. One day I was cornered and didn’t want to talk diabetes. I sat there and answered because I knew by answering questions I could be eliminating some misinformation that is out there. And I hate misinformation! I hope I seemed pleasant and not annoyed. Because even if I don’t want to answer questions, it doesn’t mean I don’t appreciate people wanting to learn more.
Sometimes the questions come from people who have known diabetes as long as I have. When these questions happen, I forget that they don’t have a way to read my mind. These questions can often be simple to answer because of the background knowledge. It doesn’t mean I’m not surprised when they’re asked.
As I have more diabetes experiences and as I spend more time with friends, the questions connect the experiences. These positively stop me in my tracks and I want to make it seem like they don’t. Diabetes moments stay with me. I often try to make the moments not seem like a big deal, even if they might be. When people take the time to remember, connect and compare, it makes me happy. I love these questions. To answer them does not generally take up a whole conversation and I realize I’m lucky to have people in my life who want to understand diabetes.
Questions are a part of life. They help us understand the world around us. I may not always want to be asked questions, but I will be grateful.
I was skiing down the mountain and the snow was perfect and I couldn’t hold an edge. (If you’re not a skier, this might not make sense to you.) I used to race, my skis are amazing, my legs are strong enough and I just couldn’t do it. Into my pocket I went for an airhead. I knew I was low. As I finished the airhead, I could feel my Dexcom going off telling me I was low. I have no idea what my blood sugar was, but by the end of the next run I felt better.
I’m pretty lucky to have been able to spend so much time at the mountain this year. Most of it has been by myself. At this point I feel like many of you may be saying “I hope you have a Share!” I don’t, and a day with the family made me very happy I don’t. See, last year I pretty fabulous/terrible day. This year it’s been cold.
I knew I needed to keep my pump and Dexcom (when worn) safe.
I put my base layer on. Then the tummie tote with the pump and Dex. Then two more layers before my jacket. The pump and Dex are not reachable while I am on the mountain. And if I tried to get them, I worry they would stop working from the temperatures. Dex believed I was under 40 for a long time, but I was holding my edges and making amazing turns and I felt wonderful. I knew I wasn’t low. If I had a Share or something similar, people would probably think I was unconscious. Really, I knew how I was doing and I didn’t want to let the cold weather stop me.
Maybe someday I will change my mind, but intuition and feeling is a great thing and it works for me on the slopes.
A blog subject was pitched to me by a friend, and I thought, “I have no idea!” Then I realized that after 25 years, I should be able to write this.
The Most Important Lessons I’ve Learned About Diabetes.
1. Knowledge is Power.
When I was little, my mom had a packet that would go with me everywhere, and they had separate copies that lived at my grandparents’, cousins’, friends’, etc. I remember making a “field trip” to all the teachers in my elementary school with a buddy to inform them about my diabetes. I remember my mom making sure the teachers I had were willing to step in should an emergency arise. I remember staying for a faculty meeting in high school to teach them what would be required in an emergency. It wasn’t until I got to college where I could make the choice to inform or not. My tennis team knew, and my roommates knew, but diabetes became a thing I tried to keep to myself. I also started to live in fear. “What happens to me if a diabetes emergency occurs and no one knows how to help?” Then it nearly happened, and I don’t keep silent anymore. The more people who know, the safer I feel.
2. Care Changes.
I was diagnosed when I had to eat the same amount at the same time every day. It honestly kept me healthier (and still does). I was adamant for years that I would never use an insulin pump. I liked my schedule. I liked my predictability. Then one day I couldn’t make a spur of the moment decision and I started the process of getting an insulin pump within one month. I haven’t looked back. It is good I decided to make this change, because the previous insulin are no longer on the market. I would have been forced to change if I hadn’t done it myself. I now keep informed on technology to know what my choices in the future will look like.
3. Everyone has Different Priorities.
My parents and I might want to treat the same low differently (even though I’m 29). My friends and I might choose different pumps. My friends and I might choose entirely different ways to deliver insulin. We might choose different organizations to raise money for. We might choose different research to get excited about. Scientists choose different technologies to work on. As long as we all respect each other, none of that matters.
4. Be Patient.
It can be so frustrating when people don’t remember what you’ve previously told them about diabetes. It wasn’t until I started working with children and I gave them time to make their own connections, did I realize that I had unrealistic expectations for the adult population. Let people ask questions and try not to get frustrated if you’ve answered it previously. I am not an expert on every disease out there or every disease that I’ve come across. This is one of the lessons I still struggle with, but I try to remember it as often as possible.
Try not to rage bolus or over treat a low blood sugar. It’s so difficult when what should work isn’t, but your body has a reason and it will help you out of it.
5. Be an Advocate.
I’m not saying you need to go out and be the JDRF or ADA national advocate. To expect that from everyone is bonkers. However, when someone wants to learn from you, help them. Help them understand what living with diabetes is like. You also need to be your own advocate. If someone is treating you wrong because of diabetes, stand up for yourself. It can be terrifying. But I promise it will be worth it. Whether you want different medical care or social care, make your life better and discuss it with those around you.
6. Ask for Help.
It appeared to me as though my parents always knew the right answers, that there was never any second guessing. What I didn’t see were the phone calls to the doctors and nurses and nutritionists. I didn’t see the advice given at the support groups. So when I went to college, I believed I needed to do everything related to diabetes care on my own. I was so determined to succeed, refused to seek help, that I landed in the hospital for the first time because of diabetes. I couldn’t understand why my mother could do it on her own and I failed within months. But I failed because this is not something to do on your own. There is a community for a reason. “Have you had this problem before?” “What was your experience when you tried that?” “I hate this.” People with and people who are knowledgeable about diabetes are in your corner and this crazy roller coaster is so much easier to ride with them.
7. You CAN Eat Everything, but You Shouldn’t.
This is not to say that you shouldn’t indulge every once in a while, because I’ll be the first to join you. Your body works so much better and more efficiently when you’re giving it healthy foods and nutrients. When you’re giving your body energy that it knows how to process, everything runs smoother.
8. Have a Backup Plan.
Things will go wrong. You might not want to admit it, but have different methods of giving insulin. Have multiple people in your “in case of emergency” list. Have multiple types of sugar for a low.
9. You Will Have Bad Days
There’s going to come a day where you can’t get your blood sugar under control. It might be because you keep going low. And you don’t think you can eat any more sugar. Or you think that your blood sugar will never come back down. This is when your emotions will try to get the best of you and you’ll want to yell at anyone who tries to help. Go back to the basics and you will get through this. Your bad day will end.
10. Have Fun.
Diabetes is a serious disease that can take over your life if you let it. Make diabetes fit your life, not your life around diabetes. Find something you love and do it. For me, it’s skiing and running and swimming and reading. Whatever your loves are, just do them. If you don’t know how to make diabetes fit your love, ask around. I bet there are others who also love it. Make your life bigger than diabetes.
I may not be happy all the time; who is? I am, however, always grateful. If I had been alive 100 years ago, or in a different country, I might not be alive today. The Spare A Rose campaign exists to help children diagnosed in third world countries gain access to insulin. The campaign runs from February 1 – February 14, urging people to stop giving a romantic present which will die, and instead focus on giving life. “Flowers die, Children shouldn’t.”
I have started an Instagram & Facebook photo campaign for the next two weeks, and I’m here to share these with you. I will try to update this post every day. Please share this with everyone you know and let’s keep these children alive.
February 1: It’s Super Bowl Sunday and I’m so excited to be able to cheer for my hometown team tonight. But while you’re thinking about who you’ll be with, what you’ll be drinking and eating and who you’ll be cheering for, think about the two players (one on each team) who lost their fathers to #diabetes complications. Think about how hard that must’ve been. Now think about the children who are diagnosed without access to insulin. What a terrible world where life saving medication exists, but not everyone has access to it. TODAY is the first day of the #SpareARose campaign. Spend $5 and you will give a child one month worth of life saving insulin. Let’s start strong and give more children hope and a chance for a better life.
February 2: To children without access to insulin, it doesn’t matter whether Puxatony Phil saw his shadow or not, because six weeks may be longer than they’ll be alive. If you spare two roses today ($10), you can give a child two months worth of life saving insulin! #diabetes #SpareARose
February 3: Want to extend a child’s life by a month? It’s really this easy. #diabetes #SpareARose
February 4: Flowers die, children shouldn’t. #diabetes #SpareARose
There are a lot of blogs swirling around in my brain, but just no time to sit and write them. Some of them have even been hand written and later typed, like this one. I wrote this a few weeks ago and hoped to publish it before the end of 2014, but such is life.
As the year comes to a close, I want to recap my diabetes year for you, because that is what diabetes bloggers do. I’ve always had a hard time picking a post from each month though, because I always try to write from the heart and to say that one means more than any others is often not true. And right now, I’m not feeling any of those posts.
It’s the friends. See, for the first time since moving to Boston five years ago, I’ve made friends without diabetes.
These friends are the ones who listen while I’m talking a mile-a-minute about a diabetes problem.
These friends quietly ask if I’m okay after I tell them a new-to-them, scares-the-shit-out-of-me, potential complication.
These friends brainstorm to make ways for diabetes not to interfere.
These friends both laugh about and support my friendships with other people with diabetes.
These friends take the time and learn how to save my life-if that day should come.
These friends are so much more than my life with diabetes. But I don’t need to get into the non-diabetes moments here. Life is so much more than diabetes. These friends make it all worth while.