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.
On World Diabetes Day, I couldn’t get away from diabetes. Every social media outlet was all about diabetes, and most of them not addressing the major issue with diabetes: that not everyone has access to insulin. I know it’s not normally my platform or my goal, but it should be. Because then I thought “what if insulin hadn’t been discovered?” Which led to “would I have made it to my fourth birthday?” It was a deep, dark hole and I couldn’t get out of it. I’m pretty sure that my lack of interacting with people during the day did not help.
I had a decision to make. Did I go home to mom & dad and escape and probably keep thinking the same way? Or did I go to the party that my friend was having? I made the decision to see my friends. All I said was that it was a bad day and that’s why I took the T in vs. driving. (I live a stupidly long T commute away from my friends.) I drank my drinks and I bolused for the first, and half a bolus for the second, and then continued to drink without bolusing. At one point I looked around and one of my friends from JDRF was there. It was awesome. I was able to tell her why it was a bad day with her knowing how easy it is to go down that hole, and why. It was something I didn’t want to burden my other friends with. By the time I thought about food, only cupcakes and other gluten filled items were around. (Here’s why it matters right now.)
I had my Dex in my pocket the whole night, and looked at it when it buzzed, but didn’t do a damn thing. I think one of the hardest parts of drinking with diabetes is to remember that you can’t bolus for your number or the carbs in your drink because you will crash and crash dangerously. Alcohol raises you and drops you. You just have to be patient. By the time I got back to the T to get home, the doors were locked. This only matters because I crashed on a friend’s couch and I didn’t want the high alarm to wake them up. Through skiing, I’ve learned that I don’t wake up for high alarms, but everyone else does, no matter if we’re in the same room or not. At that point, I was coming down from a blood sugar near 400. So I turned off my high alarm. I know it seems crazy, but drinking & diabetes requires patience. Lots and lots. (I should also tell you that I forgot to restock my test strips and didn’t have any left with me.) I woke up around 10 with a blood sugar somewhere over 250. Off I went on my trek home, and ignored the Dex in my purse. When I got home, I took a fraction of a bolus. Based on my Dex, I was still falling without bolus insulin, but I wasn’t comfortable with how high I still was. Around 4:00, I flatlined around 125 and stayed there. All in all, this was a 19 hour process. Having a sensor can make life both easier and harder. I knew how high I was. I also knew not acting is what I needed to do. Our bodies are machines, and we have to let them work the way they’re intended to work. Even if we don’t like the current, real time number.
I’ve alluded to it in the past but I realized I never wrote about it. I haven’t been able to get this low out of my head. As I was talking with a friend I told her that this is one of my top five bad diabetes moments of my life. And I can’t get it out of my goddamn head lately. It’s been nearly a year, and I think about that night most days.
It was a water polo game, and I was still a newbie. I’m pretty sure some of my teammates already knew I had diabetes, because I had to ask one to fix the tubing in my bathing suit. Quick recap: 9 people per team in the pool at a time, at least 3 girls and 3 guys at all times. We only had 3 girls that night, meaning we couldn’t switch out. I lowered my basal and hoped for the best. I got in the pool and prayed that another girl would show up. No one showed up. Towards the end of the game I started to feel low. I stayed in the pool (we are in inner tubes, but this was not a smart decision). I kept going, and going full speed. I didn’t want to let my team down. I didn’t want to be a burden. I didn’t know how they’d react if I had to get out of the water, and leave them a a man short because of diabetes. There were so many things I didn’t want, but the one thing I needed was to get out of the pool. Our game was over and I jumped out of the pool as fast as my sluggish body could move. I dried off and tested, without shaking everyone’s hands, and was in the 30s. I don’t remember what I ate, but I ate and ate and ate and ate. (I’m guessing airheads.)
I couldn’t drive yet. I didn’t even know if I could walk to the bar. I couldn’t stay at the gym by myself though. So I walked. I literally wanted to grab the arms of the people next to me and hold on. I was so shaky. We got to the bar and I sat. We don’t normally sit. We stand and mingle and talk to as many people as possible. I couldn’t move. I kept checking my Dex waiting for the blood sugar to come up, but it just kept yelling that I was low. Still. Nothing was helping. Friends sat down and asked how I was doing. I remember grumbling something about never staying in again. And being completely out of it. It started conversations about diabetes, and they lasted for hours. I had never stayed that late. How was I still low?
Was I going to come up?
What if I was still low when the bar closed?
How would I get home?
What about my car?
I couldn’t vocalize these thoughts. I couldn’t let these new people know how terrifying diabetes could be. Even though they could physically see it. I couldn’t let them in to the mental part of it. I needed some sort of grace. I needed to leave and not be embarrassed. I was mortified. How could this monster show up and ruin this new, amazing, fun part of my life. As the lights came on I tested and I was barely over 100. I drove home, with more sugar waiting in my lap just in case.
I got home and wrote.
I still think about this night and it still scares me. I know I made the wrong choice, and when the same situation occurred again, I got out of the pool. I don’t know why this particular night haunts me every day, but it does.
When I read Kerris’s post about going/being gluten free, I was intrigued. Not because I thought “oh, that sounds like fun!” But because there is one symptom I’ve thought I had for a long time; I just didn’t realize it was a symptom. The brain fog.
I have always noticed it seemed like I have a much harder time remembering things like to-do lists. Or when having important conversations, I couldn’t remember all the bullet points I had researched. I’ve been annoyed by it, but choose found ways to work around it. Until I saw the brain fog.
When I went to Friends for Life in 2013, I had the celiac test done, and I don’t h
ave celiac. Yes, it could change since then. But I also don’t have the marker that all people with celiac have. When my endo explained it to me, she said it does not mean I won’t get get celiac, but all people with that specific marker do get celiac. If I am mistaken in this understanding, please let me know!
I googled “celiac brain fog.” Here is what I’ve found so far:
I have started a month month long trial. I am finding gluten in the most bizarre places (roasted sunflower kernels?!) and currently eating a pretty limited diet. I know gluten free does not equal a limited diet, but you also must remember I don’t have a kitchen. This is new to me. I’m keeping a food journal along with anecdotes about my thought processes. In a month, I will reintroduce gluten. From there I will make a decision. In the mean time, if anyone has simple gluten free recipes they want to share, I would love to see them!
On Saturday I made a plan for Sunday. I planned to walk for coffee. Get on the T. Watch football. Drink. T & Cab Home. First of all, my plan was not based on getting drunk. It was based on at least football games and not wanting to watch the clock and the drinks because of driving.
When I woke up on Sunday, I went to get some breakfast and coffee at Dunks. I didn’t realize it would be raining Sunday. Not only was it raining, but it was a rain/snow hurts-when-it-hits-you mix. I started rethinking my plan as I got in the shower. When I looked out the window after, it was snowing. Big, beautiful, white, sticks-to-the-ground flakes. I was running on the low side, and was getting to walk almost two miles to the T. I had to figure out how to balance the already low, with the exercise, along with spike the adrenaline from the excitement was going to give me.
As I was changing my pump site, I remembered not having supplies with me, and packed a pouch with the other battery, a spare pump site, a needle and a bottle of humalog. I also threw my glucagon in my purse. I didn’t like my purse being a little more bulky, but I knew it was the smart choice. Especially since I wasn’t driving. I had a roll of smarties before the walk and headed out. I wanted to stop and take a picture in front of every yard. It was just so beautiful. About 3/4 of the way there, I was feeling a little bit low and then my Dex went off. With a high alarm. I was really confused. I kept walking and tested when I got to Starbucks. I was in fact high (but not too high). I blamed it on the smarties combined with the adrenaline. I bolused for my coffee and went on my way.
By the time I got to the bar, all I wanted was water. It just didn’t make any sense to me. I tested and was over 300. I went off to the bathroom and leaned down to smell my pump site. It was the unmistakeable smell of insulin. When I pulled the site, it was kinked. I gave myself a shot for the number and for the drink I was about to have. I had spread my stuff out on one of the sinks and of course someone came in as I was filling up the syringe. I felt completely awkward. I then had to tuck my shirt up to put a new site in. That didn’t feel awkward either. I know it was what I needed to do. I was hoping more than anything that the new site would work (and it did). I am glad I was able to catch the kinked site before I started to feel sick, but it still is not a great thing to experience. The rest of the day was uneventful diabetes wise and I couldn’t be happier.
About five hours after I changed my pump site, I got an alarm for a low battery. Every time the pump would beep at me, I’d be in the middle of something, like driving. I should’ve set an alarm to change it, but I didn’t. I kept going with my day and I met my friends for dinner and I went to remote bolus and the meter wouldn’t talk to the pump because the pump was dead. I may have yelled a few expletives and started thinking of solutions. I didn’t have a needle or any spare insulin either. I was already over 200 as well. The only solution that I could think of was to go home. There was this problem and I just couldn’t see any solutions other than the worst one.
My friend said “why don’t you just go to the gas station?” I ran down to the gas station, got my batteries and ran back to dinner. Then danced in the bathroom waiting for the pump to rewind and all that nonsense that has to happen when you replace a battery in an Animas not at site change time. I didn’t realize how weird I probably sounded to the others in the bathroom until I was nearly done. When I came out my friend asked what I would’ve done if the gas station didn’t have batteries. I grumbled something about going home. She told me that I was being ridiculous and that they would’ve found me a pharmacy.
It seemed so obvious. It was so obvious. Does anyone else have trouble problem-solving when it comes to diabetes problems?
At the beginning of September I finally signed up our YLC team for the Boston JDRF One Walk. I got my typical donations, but I felt like I was stuck in a fundraising rut. I noticed that Steph had been thanking people on facebook for weeks, and I was wondering what her trick was. She suggested Facebook messaging ALL of my friends. It seemed a little intimidating and excessive, but I figured I’d go for it. I am amazed at the people who stepped up and donated. There were people donating who I haven’t spoken to in years. On the day of the walk, our team had raised nearly $5000 and I could not have been more proud to be a part of this team.
I am proud to welcome the next two presidents to YLC! I have been waiting for this since we tried to host a fundraiser. Looking back, I realize that I was not in fact the right person for the job. When it seemed as though no one else would step up, I stepped up. But when it came time to recruit new members, or solicit donations or plan hosting details, I had nothing. I don’t have former colleagues (I mean, I do, but they’re children). I don’t have connections in the business world. Negotiating is not my forte or anywhere in my knowledge bracket. I was not successful. I had ideas, and I’m proud of those ideas. I just didn’t have a way to implement them. I think that this new duo has both the ideas and they are both capable of implementing them.
From what I understand, this opportunity fell into our lap. I am really excited to share it with you, and hopefully you can be there! “We’re pumped to be a nonprofit partner for The 3rd Annual Boston Fall Finale at The Revere Hotel on Friday, November 7th from 10pm-2am. The formal event will feature a full open bar, delicious hors d’oeuvres, great music, and an awesome crowd! Check out the event page at finale.squadup.com for more information on partners, pictures from last year and a link to buy your ticket!”
If you have found this event through my blog or any other JDRF information source, then go here to buy your ticket!
If you want to check out the event on Facebook, you can do that here!
If you want to save $10 off the ticket price, enter the code jdrfvip at checkout!