This November, I participated in the #HappyDiabeticChallenge on Instagram. This challenge centered around daily prompts to respond to via an Instagram post or story. I’ve decided to spread the challenge to my blog for the last couple days of National Diabetes Awareness Month. As a result, today’s post topic is beyond diabetes.
I can’t believe that today is the final day of November, A.K.A. National Diabetes Awareness Month. In a way, I’m relieved. After all, diabetes advocacy can be exhausting. I’ve kept up daily Instagram posts, in one way or another, in response to the #HappyDiabeticChallenge. I’ve tried to keep all of my blog posts this month on theme. I even participated in a fundraising live stream on YouTube, which was an anxiety-provoking yet exhilarating event all on its own.
Needless to say, I’m looking forward to dialing it back down, temporarily, for the month of December. I won’t stop advocating, but I will take a small step back from it so I can recover and process everything from the month in my own time.
It’ll be a good way of reminding myself that I’m more. More than just this stupid chronic disease. There’s so much more to me than diabetes: I’m a daughter, a sister, a girlfriend, a best friend. I’m a dog lover (despite being allergic to most of them). I’m a young professional. I’m a millennial (who proudly owns the moniker). I’m a Disney fanatic and Harry Potter obsessive. I’m a creative and passionate person who cares about a lot of different people, things, and projects.
I’m beyond my diabetes. I prove that to myself each day by living my life unencumbered by it. When it knocks me down, I always get back up to remind it that I’m the boss.
Beyond National Diabetes Awareness Month is a broader realization that I’m a bit burnt out by this hardcore advocacy. And that’s okay. I’ll take a breather and remember to enjoy life more, because I know that I’m beyond diabetes.
This post originally appeared on my blog at ASweetLife.org on November 26, 2013. It’s hard to believe that I wrote it nearly five years ago, but with Thanksgiving occurring tomorrow, I thought it would be appropriate to revisit it since it captures my feelings about diabetes this time of year. Of course, life has changed quite a bit in the last five years, so I’ve made a couple amendments (below, italicized) to the original…
Each year around Thanksgiving, I think about the things that I am thankful for in life. Some obvious answers come to mind: my parents. My brother, my boyfriend, my dog. The fact that I am able to attend an amazing college. The roof over my head and the food on my plate. The list could go on and on. I’m sure most of my answers are unsurprising.
But is it weird that I’m thankful for diabetes, too?
Don’t get me wrong here. Oftentimes, I resent that I have to deal with the burden that is diabetes on a daily basis. I cry about it, I get angry about it, I curse about it. I wish that it didn’t impact me or my loved ones the way that it does. I’m all too aware, however, that I cannot change the role diabetes plays in my life. All I can do is accept it. When I did that and truly thought about what acceptance means, I began to think of why I might feel blessed in some bizarre way to have diabetes.
For starters, my diabetes has brought me closer to my family. My mom and I are able to relate to each other on a different level because of it. My dad and my brother show concern and unrelenting support for us that might not be the same if Mom and I did not have diabetes.
Sometimes, I think about how even though my diabetes seems to have a mind of its own, it adds a certain degree of control regarding some aspects of my daily life. It helps me get into a routine that is pretty static. It relies on what I choose to feed myself; in this way, it motivates me to make the right choices when it comes to my diet.
And it has brought some amazing opportunities my way. Without diabetes, I would not have become president of the UMass Amherst chapter of the College Diabetes Network. I would not have discovered the Children with Diabetes: Friends for Life conference that I attended in Disney this past summer, where I made some awesome friends who keep in touch with me. And I certainly would not have begun blogging for ASweetLife.org. This experience itself has allowed me to get in touch with my feelings regarding diabetes to a greater extent. I have been able to explore my interests as an individual who loves to write. I have the pleasure of speaking with a wider variety of people within the diabetic community and hearing individual stories that I might not have ever heard.
I never would have guessed that a mere five years after writing this post, I’d be writing content for my very own diabetes blog. The creation of Hugging the Cactus is a huge diabetes-related accomplishment itself, but I’m reflecting on other diabetes changes I’ve experienced and how I’m thankful for them…so many come to mind. My OmniPod insulin pump, my improved A1c levels, new friendships formed…I’ve come a long way, and I’m grateful for every single positive experience that diabetes has brought into my life.
That’s why I’m seeing diabetes as something to be thankful for this Thanksgiving. I long for the day where diabetes is cured and I no longer have to think about it. But for now, I want to make the best out of something that could be perceived as the worst.
With all that said…enjoy your Thanksgiving holiday! No matter how you choose to celebrate it, remember that you are loved, you matter, and there’s people in your life who are endlessly thankful for your love and light.
This blog post is a response to a prompt provided by my friends at the College Diabetes Network, who are celebrating College Diabetes Week from November 12-16. Even though I’m no longer in college, I like to participate in CDW activities as much as possible to show my support for the CDN!
Invisible illnesses like diabetes can be difficult for healthy people to truly understand. Typically, they only see bits and pieces of it; for instance, when someone performs a blood sugar check or injects insulin. There’s so much that they don’t see: doctor’s appointments, late/sleepless nights, complex calculations, careful monitoring, and so forth.
But what’s really difficult for anyone to see is the emotional impact of diabetes.
Unless I choose to open up to someone about it – which is easier said than done – then there’s no way for another person to grasp the magnitude of the emotional side of diabetes. There’s no way for someone to feel the incredible amounts of anxiety, fear, and anger that cycle through me as I deal with diabetes. While I don’t experience these emotions every single day, I DO have to experience diabetes daily, and it’s impossible for someone to know what that’s like unless they either have T1D or care for someone with it.
I don’t wish for anyone in the world who’s unfamiliar with the (literal and emotional) ups and downs of diabetes to actually learn what it’s like. But I do wish for a world that’s a little more understanding, accepting, and educated when it comes to all things related to diabetes – and that’s why I advocate.
Low blood sugars are funny. Not ha-ha funny, but peculiar in how they affect me physically and mentally.
A few weeks ago, I had an experience with a particularly scary low. It frightened me so much that I’m only just getting around to writing about it now, because I needed some time to gather my thoughts on what happened.
I’ll set the scene: I was home alone. I had eaten a carb-heavy dinner and decided to do a 30-minute, high-intensity workout. This was definitely far from my best idea ever, because due to the high-carb intake, I had a lot of insulin on board. That, coupled with the exercise, meant that my blood sugar was bound to crash soon after completing the workout.
And it sure did.
I had just stepped out of the shower and wrapped myself in a towel when I began to feel it. That sudden wave of weakness, shakiness, and dizziness. I walked to my bedroom, grabbed all of my diabetes supplies and my cell phone from my purse, and sank down to the floor with everything in front of me. I knew it would be wise to just sit there for as long as I needed, because I was afraid to go down the stairs (and possibly fall down/hurt myself in the process) in that state.
I checked my CGM, which confirmed that I was dropping quickly. I stared at the screen, panic flooding throughout my body. It occurred to me that I should probably do a finger stick check to make sure I was really that low, so I did, and saw that I was 60 mg/dL.
Now, I’ve absolutely been lower than 60 before. It’s never a pleasant experience. But rather than using that as a comforting thought, I couldn’t help but dwell on how terrible I felt and how frightened I was to be home alone with at least four more units of insulin still working in my system.
All I could do was chew four glucose tablets, suspend my insulin delivery, and wait.
In that period of time, I was totally immobilized.
I’ll never forget how alone I felt, how out of control I felt.
I felt powerless against my diabetes. My own body.
I’ll never forget the fear that consumed me, that nearly prevented me from helping myself in this situation.
I’ll never forget texting my mother and my boyfriend, telling them what was happening, and expressing how scared I felt.
I’ll never forget bursting into tears when they didn’t reply quickly enough.
I’ll never forget turning to my T1D Twitter buddies for help by sending a tweet about what was happening, or how swiftly and comfortingly they responded to me.
And I’ll never forget how I let my mind drift as I wondered whether I’d be okay.
It sounds totally dramatic, especially for a low that, in the grand scheme of things, could’ve been much worse. I can admit that.
But I can also admit that this is one of the few times in my life that I felt truly terrified of my diabetes, and swept up in the fact that things can change so quickly with this condition that it can quite literally knock you off your feet.
Obviously, I recovered just fine that night. The glucose tablets did their trick and my low symptoms subsided. It took longer for me to calm myself down, to breathe normally, non-panicky breaths. At least my puppy was around to soothe me.
I was fine, I will be fine. But I won’t forget this incident, ever.
What is LDM? According to my mother, it stands for Lovely Diabetes Mystery. The “lovely”, of course, is sarcastic, whereas the “diabetes” and “mystery” relate to a random, unforeseen diabetes medical incident – which occurred to me on Sunday, October 7th.
I woke up that morning with some abdominal pain. I rolled over soon after waking to check my CGM, and was startled to see that I’d be in the 300s for most of the night as I was sleeping. I quickly bolused for it using my PDM, and shut my eyes, hoping to get some more rest and to wake up again without stomach discomfort.
No such luck. About an hour later, I opened my eyes and looked at my PDM again, and I had barely come down. I tested to confirm, and sure enough, I’d only gone down a few points. I was worried, which was exacerbated by the weird nausea I was having. Could this be a sign of something more serious?
My mother convinced me to do a manual injection with a syringe. We both figured that that would help bring my numbers down faster, and that if I started coming down quickly, then it could mean that the pod I had just applied the day before was not working properly. We agreed that I should probably change it, to err on the side of caution.
However, I didn’t get to change my pod until much later in the day. That’s because of what happened soon after I took my manual injection.
I went to use the bathroom, certain that the churning of my stomach meant that I was about to be sick. I was standing in front of the toilet when I started sweating – profusely. On top of that, my vision went all fuzzy, and I felt totally disoriented. I knew something was wrong, so I called out for help.
My mom raced into the bathroom to find me seated on the floor, dripping in sweat. I placed myself on the floor deliberately because I was worried I might pass out and injure myself. She started cooling me down with a wet facecloth, and searched through the drawers to find a thermometer to check my temperature. She also grabbed her test kit and my lancing device, because naturally, we both assumed that perhaps my blood sugar was dropping rapidly from the insulin injection, and it might be a hypoglycemic event.
But when we checked my blood sugar, I was still in the high 200s. I was pretty scared at this point and just wanted the sweating to stop and for my vision to clear. That’s when my dad came in and made the executive decision to call an ambulance for me.
A police officer, three firefighters, and two EMTs showed up my house. I answered questions in my confused state. My vision restored and the sweating stopped, but I still felt weak and woozy. They put me into the ambulance. I was given an IV bag and medication for the nausea. It was my first time in an ambulance and it was not exciting, just weird. I didn’t like riding backwards or experiencing the twists and turns along the way.
We arrive to the hospital. I’m whisked away into the ER. I answer a series of questions from various medical students and nurses and doctors. They draw blood for tests. I give them a urine sample for more testing. I keep on explaining the concept of my OmniPod to each one of them. No one seems to have seen it before, besides one med student who has a sister who works for Insulet. Small world!
We monitor my blood sugar closely. My tests come back normal. I eat my first foods for the day around 2 P.M.: sugar-free jello and two hard-boiled eggs. Yum…
I get an injection of insulin at the hospital. We don’t have a vial of Humalog with us – it was the one thing we forgot to grab from the house. But my dad drives home to retrieve it so I can change my pod at the hospital. My mom does it for me. I feel helpless.
The old pod comes off and we notice a definite bend in the cannula. Okay. One thing explained. I wasn’t receiving my full insulin dosages due to the bend, and unfortunately, I have no way of knowing how much insulin I was truly receiving. All I know is that it wasn’t enough, and that’s why I was running high.
I receive a diagnosis: vasovagal syncope, or pre-syncope. It’s explained to me, but I still don’t really get it. So I text my best friend, who is also a nurse. She tells me that it’s very common and can be triggered by a variety of things. The pre-syncope aspect makes more sense to me, seeing as I never truly passed out.
I’m discharged and feel so very tired. It was a long day. The following days are filled with follow-ups and message exchanges between myself, my endocrinologist, and my primary care physician. My healthcare team and I think that we come up with a plausible explanation for the hullabaloo: My body knew something was wrong. It knew that my blood sugar was abnormally high, and it knew to send signals to me that I needed to take care of it. Hence, the abdominal pain. My dehydrated state exacerbated things, and when I started sweating and lost more fluids, it was a lot for my body to experience.
Sheesh. What an ordeal. Like any diabetes-related experience, it taught me a lot, but I certainly don’t want anything like that to happen again. Shout-out to the healthcare professionals, but especially my parents, for taking damn good care of me throughout the whole episode. You’re the bomb diggity.
October 2, 2017: The day that I hit the “publish” button and Hugging the Cactus went live.
I can’t believe it’s been one year (and one day) since this blog was officially born. So much has happened in my life in the last 365 days, both related and not related to my diabetes.
And this blog has gone through so many changes in that time span. From aesthetic to logistical, it’s been a (welcome) challenge to figure out the best way to write and run Hugging the Cactus. I’ve learned so many new things along the way and I continue to learn more on practically a daily basis.
Although I wish that diabetes wasn’t a part of my life – or anyone’s life – I’m grateful that I’ve mostly made peace with it after 20 years of living with it. Actually, scratch out the “living with it” and replace it with “thriving with it”. I used to think that was totally cheesy, but that phrase really does encapsulate what it’s like to be undeterred by diabetes.
I’m also grateful for you, the reader. There are times in which I question why I write this blog. Those times are fraught with self-doubt, writer’s block, and listlessness. But then someone reaches out to me – directly through the blog, via social media, or even in-person – and they offer support or let me know that my writing has resonated with them in some way. And that, right there, reminds me why I write this blog: to connect with others, to remind people in the diabetes community who deal with this isolating chronic illness that they’re not alone, and to raise general awareness of T1D. There are many people in this amazing tribe of ours who write better blogs, take prettier pictures, and impact a larger audience than I do, but like them, I’ve found my own voice that has allowed me to channel my experiences with diabetes in my unique, storytelling way. And I plan on continuing to do so for a long time to come.
So thank you, reader, for stopping by here three times a week and supporting my mission. I hope that you enjoy the next year’s worth of Hugging the Cactus. For now, let’s celebrate today by reminding ourselves that we’re more than our current blood sugar values or A1c levels. Celebrate by choosing to do more than just live: thrive.
I write a blog about it. I vent to family about it. I almost always casually mention it to new people that I meet.
I have multiple social media profiles dedicated to it. I own several t-shirts that identify me as a person with diabetes.
It’s the first thing I think about in the morning when I wake up, and the last thing I think about before I fall asleep at night.
And yet, sometimes people complain – jokingly and seriously – that I talk about it too much.
Of course I do! I totally own up to that fact. But think about it…
Doesn’t it make sense that I talk about it so much?
It affects the most mundane decisions that I make on a daily basis. It affects my mood. It affects my body. It affects the foods I consume. It affects what I carry in my purse each day and what I pack in my luggage on vacations. It affects my finances and my gym routine and the doctors I have to see.
If someone thinks I talk too much about my diabetes, then I’d like them to understand this:
Talking about diabetes spreads awareness and saves lives.
Bold, italicized, and underlined so the message and its significance is clear. Too many people in this world just don’t understand type 1 diabetes. They don’t realize how dangerous it can be, or how it is managed. In my personal experience, being open with others, answering their questions, and dispelling diabetes myths has resulted in nothing but positive outcomes.
It’s even helped people I know save a life, because they knew what to do when a T1D close to them was experiencing a hypoglycemic event.
All because I “talked too much” about diabetes.
With that in mind…you can bet that I won’t be shutting up about it any time soon.