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!
I know that we’ve all experienced a wrong fast food order (and if you haven’t, please share your ways!) I was in Maine buying breakfast for everyone at Dunks and it was remarkably empty and quick and I was amazed. I bolused for my food, which included a delicious & sugar filled pumpkin coffee.
I understand that we’re all human. I understand that we all make mistakes.
Do they know that when they give me the wrong order, they’ve essentially given me the wrong dose of insulin? Do they know that an over bolus might make me need to pull off the road and sit and wait for my blood sugar to come up? Do they know that an under bolus might make me feel like I’m going to pee my pants because my blood sugar is so high? Do they know how weak a low blood sugar might make me feel? Do they know how dangerous being low while working on a house can feel? Do they know that I’m not complaining just because it’s not what I want?
1. I was hungover as shit, but going on the date anyway. My blood sugar was still high because of the drinking the night before, and I bolused for that in my car. Luckily our plan was only coffee. I started drinking my coffee and completely forgot about the insulin needed. When I finally remembered I pulled out my pump and didn’t try to hide it. I held it above then below the table as he was telling a story and he stopped short and said “Is that a pager?” (I held it below the table, so I wouldn’t seem rude if he thought it was a phone.) I explained what it was, he asked how long I had had it and he thought over if he knew anyone else with diabetes. It was a very quick piece of our date, and it was probably the easiest diabetes conversation I have had with a date.
2. Sometimes you leave and think, “did he really just say that?” and it has nothing to do with diabetes. Dating is hard. To me, it feels like interviewing over and over and over again.
3. My dexcom site was on my arm and it had been there longer than 7 days (but I don’t remember exactly how long). The tape was looking pretty gross and the shirt I wanted to wear would have made it very visible. At this point, I have mostly gotten over people looking at my CGM. But it looked gross and unclean and it was not a sight that would make a first impression. I yanked it and was left with this:
I was so worried that my tan lines would make diabetes a focal point of the conversation. It didn’t. It was fine (of course it was fine!) But there was a LOT of thoughts running through my mind getting ready, driving there, etc. (Maybe he didn’t notice because he was on his phone before our drinks got to the table?)
If there is one thing I wish I could tell you, it’s that my #WalkWithD is different every day. Or hour. Or minute. That’s why this initiative is so important. And if you want to learn more, go here.
I was sitting at the table with my cousins and friends in my too thin dress for the weather. But I had bought it just for my birthday and damn it, I was going to wear it. I grabbed the warmest sweater that looked good with it, and that’s what I wore. I was so excited and so determined to be happy for my birthday. I turned to my cousin and said, “is it getting really warm or is it me?” It was me and my blood sugar was dropping. The waitress came over for drink orders and even though I had a margarita and a water in front of me, I ordered a sprite. I was hoping it would come immediately (but didn’t think to ask to make sure it would), but it was getting hotter and hotter, so my friend went and grabbed sprite from the bar. (I had liquid glucose with me, but had forgotten to grab my bag of airheads, so was saving the limited glucose for later if it was needed.) A different friend came over with a shot for me, but I knew I couldn’t take it yet. I needed my blood sugar to come first. So I sat there with my sprite, margarita, water and shot through dinner. I couldn’t reach the food because of all the beverages. I felt ridiculous. Who lets a shot sit on a table through an entire meal? I kept looking at it. I’m not one who does a lot of shots in the first place, and here diabetes was ruining my chance. But! I knew more than anything else that I needed to focus on raising my blood sugar before I thought about drinking anymore. Low blood sugars + alcohol = makes me the most nervous. So I just kept watching it. Want to know the first thing I said when I was done with it? “That was really sweet!” All my friends were laughing at me and saying “too bad you couldn’t just use that to treat your lows!” We joked, and I laughed, and I wasn’t upset with their jokes because they were said with understanding and a hint of “diabetes would be better if…”
My drink choices that night were the shots, margaitas and ciders. Yes, I bolused for my food and one of my margaritas because I know that works for me. And because I was over 200 with 2 up arrows. I finished the night in the 100s and flat lining. I had my friends around me asking how I was every now and again. And as much as that might annoy me most of the time, I was happy to have people who realized this was the night I wasn’t going to be the responsible one, and knowing that they could take over if needed.
That’s not how I wanted to make diabetes my own, but my hand was forced. Living with diabetes means that plans & schedules & timing somtimes have to change. And even though it might not be what you want, there is a way to make it work. And when I think back on my birthday as a whole, waiting to take a shot is not what I remember. It’s the friends and family and acquaintances who came out and hugged and laughed and smiled with me.
I’ve been absent. Only blogging though (at least I think).
To say that this summer has been a roller coaster would be a large understatement. I’ve been changing goals, changing how I reach goals that have stayed the same, enjoying & embracing the time with family and friends. I’ve been diligent in my Dexcom use, but only because everything else has been so out of control, that it was the only way for me to keep somewhat responsible in the diabetes world.
As I was thinking about how to explain this to you, in a more detailed manner, I realized it didn’t matter. There were experiences I wanted to share, but couldn’t. There were emotions I wanted to yell about, but realized it wouldn’t change a thing. There are ways to make decisions that need to be changed, but I don’t have the power to do it. There is family that is gone. Read that last one again.
My goal here is not to make you feel sorry for me. The thing is that with all of this SHIT that I’ve experienced, I’ve also realized that my life is so much more full than it was a year ago. I’ve spent more time with friends than I could’ve imagined. I’ve had more people to call after a bad day. I’ve had people say that they’re happy to be my friend, not just thank me for being their friend. I had a terrible vacation, which I was able to make look great through pictures, because I had friends who stepped in when all I could say was “I need to escape.” To the shy, scared, intimidated me of the past, this is a huge deal. It’s made dealing with all of this SHIT able to be dealt with. I didn’t even realize just how much I had been through until I went to send an email. I was asking for advice and then I explained everything I thought they might be able to help me with. It took me HOURS to write the email because I couldn’t stop sobbing. That day I realized just how great my life is.
I can’t tell you about diabetes because I honestly don’t know. I know that my blood sugar was high all the time during vacation; I also know vacation was the worst week of summer. Hopefully life and diabetes calm down soon. Until then, thank you: whether you knew you were helping or not.