T1D is like a prickly cactus (literally and figuratively), but I've learned to embrace it, thorns and all.
My diabetes journey began on Christmas Eve in 1997. That day, I became the third person with type one diabetes in my family. I was four years old at the time, so I've lived most of my life with diabetes. While some people may view this as sad, I've learned to embrace my chronic condition and live my life without limitations. You might say that I've taught myself to hug the cactus, so to speak.
When I'm not blogging, you can find me enjoying any or all of the following: time with family and friends, a quality cocktail, Harry Potter, a good book, General Hospital, pop culture from the last three decades, and tasty foods.
I love connecting with other members of the DOC (diabetes online community) - so please don't be shy, find me on Twitter or Facebook!
As Carrie Bradshaw would say…”and just like that”, another National Diabetes Awareness Month (NDAM) has come and gone.
And yes, I learned a couple of lessons in the past 30 days.
For starters, I learned that my mindset going into NDAM was identical to my mindset at the end of it: Pace yourself. Life with diabetes is a marathon, not a sprint, and it deserves to be treated as such.
I also learned that it’s a whole lot easier to drown out the deafening noise of NDAM online when I choose to be mindful about how much content I consume during the month of November. I kept my focus on everything that pertained to my work at the time, and I decided to remove my personal feelings about social media and NDAM from the equation. That made it so much easier to keep my attention on the specific initiatives I was hoping to accomplish during the month, and I was able to make sure that work stayed separate from anything I shared on my blog.
And finally, this particular NDAM reminded me that you get out of it what you put into it. I could’ve put my heart and soul into diabetes advocacy last month and I’m sure I would’ve gained so much from that experience, but since I had enough self-awareness to realize I just didn’t have the same number of spoons to give this year as I have in years past, I made the conscious decision to cut back. I don’t regret it for a second, especially considering that this extra attention could be placed on my actual lived experience with diabetes and taking extra steps to improve my management. That manifested itself into one of the best endocrinology appointments I’ve had in recent years, and truly, what more could I want out of NDAM? After all, I can’t be the kind of advocate that I’d like to be if I’m not taking proper care of myself…so if the only outcome I have from this NDAM is that I’m finally feeling confident in myself and my use of my diabetes devices, then I have absolutely no regrets about that whatsoever.
This blog post was originally published on Hugging the Cactus onAugust 4, 2021. I’m sharing it again today because I’m starting a new job! I’m thrilled about this new opportunity and as I was planning to make the switch to a new healthcare plan, I found my own advice to be pretty helpful. Read on for all 4 of my tips…
Hi, my name is Molly and I have type 1 diabetes, and although I am extremely grateful for health insurance, I also hate every aspect of it.
When I aged out of my parents’ health insurance plan two years ago, I was completely lost and overwhelmed by choosing my new plan. How much would I have to pay for my supplies? Would everything be covered? Could I keep my doctors? How much money should I put into my FSA? The answers to these questions took me a good chunk of time to figure out, and I only started feeling good about my knowledge of my old job’s health insurance plan in the last year or so.
As a result, the only thing that made me less excited to start my new job was the burden of having to figure out a new health insurance plan. And for good reason, it turns out, because it has been a challenge to say the least. But there are a handful of things I’ve learned along the way that I don’t think I’ll ever forget so that I can have an better experience the next time I need to change health plans. Here are my tips for making the transition from one health insurance plan to another as easy as possible:
1.Take stock of ALL my supplies before starting the new job (and before losing my old job’s health coverage). This was, without a doubt, the best thing I could’ve done for myself before I started my new job. In my last few weeks with my former company, I looked through all of my diabetes supplies and inventoried them. I kept a running list of the most important items (things like insulin, Dexcom sensors/transmitters, and pods) and decided that even if I had plenty of those things, I would still place an order for them before losing my health insurance. This ended up being a fantastic idea because it took me a solid couple of weeks at my new job to figure out which health plan would work best for me, and in that span of time, my supply stash was dwindling. On top of that, it took several more weeks for me to get all my prescriptions straightened away (more on that in tip 3), so I was especially grateful that I had seriously stocked up before leaving my old job.
2.Compare plans extensively. Like I mentioned above, I spent a couple weeks reading through my plan options before I finally settled on one. It took me so long because I wanted to feel 100% comfortable with my new plan, and I knew that I had a 4-week period to complete my research before committing to a new plan. Plus, my new job uses a website that offers a health insurance plan comparison tool (a super cute one, to boot, that explains all things insurance in layman’s terms) that I was happy to take advantage of during the decision-making process.
3. Send as many messages and make as many phone calls as it takes until everything about the new plan is crystal clear. For me, this including calling my local pharmacy and sending toooons of online messages to my doctor’s office, as well as my new health insurance provider. I honestly felt like I was playing a game of telephone – you know, that game that kids play where they have to whisper a message into each other’s ears as a test of listening and communicating effectively – because it seemed that nobody would take accountability for sending my prescriptions to the right place or understanding exactly how I needed help. So in the last few weeks of July (leading into the first few weeks of August, really, ‘cuz I’m still working on this), I made a vow to myself that I’d get to the bottom of everything and get my prescriptions fully straightened away. I’m happy to report I’ve made substantial progress, but I’d be lying if I said it didn’t require a lot of my spare time and energy.
4. Talk to coworkers and ask for their feedback on plans. This might be unique to me because I work for a diabetes organization and my colleagues have an intimate knowledge of health insurance hurdles combined with a chronic illness, but even so, I remember asking coworkers at my previous job about their thoughts on the health insurance offerings and I got some solid feedback from that. So that’s why I decided to ask around at the new job, and of course I was met with helpful replies that made my transition a little smoother.
The biggest lesson I learned throughout this process? I realized I need to give myself a little grace. This stuff isn’t intuitive to anyone (unless you’re some sort of health insurance guru). I shouldn’t beat myself up because the system is more complicated than it needs to be. And bottom line is that I need to focus on the fact that I have choice when it comes to health insurance, period, because I know that there are too many people out there who can’t say the same.
So I guess in a way I am glad for the challenges presented to me by my health coverage.
On the surface, “gratitude” and “diabetes” don’t exactly go together like peanut butter and jelly…but for me, they are natural companions.
Every year since I’ve been a diabetes blogger, I’ve done some sort of post that explains why I’m grateful for diabetes around the Thanksgiving holiday. It’s a nice opportunity for me to take time to reflect and express appreciation for some obvious and not-so-obvious people and things.
Of course, there are a number of repeats year after year, including my family, friends, and partner; my dog, the roof over my head, the food on my plate, and so forth.
But as changes take place over time, additions are made to my list. Here are some new ones for this year:
New opportunities. Yesterday marked my final day working at a diabetes nonprofit. This Monday, I’ll begin a new job and continue my writing/editing career at a company that I’m thrilled to join. I’ve got mixed emotions about leaving diabetes behind professionally, but one thing is for certain – as a member of the diabetes community, I’m excited to continue being an active advocate and supporter of the people and programs that I’ve encountered in the last year and a half.
Access to diabetes supplies. I’ve always taken my diabetes supplies accessibility for granted. I don’t struggle to afford the medications and technologies I use (though it would certainly make my life easier if it was cheaper) and I am fortunate enough to have a solid supply on hand at all times. I know that other people with diabetes can’t say the same: an awful reality, but one that opens my eyes to something I should never take for granted.
Exploring hobbies. I’ve had the wonderful chance in the last year to explore hobbies both old and new. I’ve recently picked up my knitting needles again and have made solid progress on my first sweater in a couple of years. I’ve been borrowing more books digitally from the public library so I can rekindle my love for reading. And I’ve been able to try tons of unfamiliar pastimes that I’ve grown to really embrace, such as volleyball, tabletop games, and even video gaming. It’s been a goal of mine to refamiliarize myself with the concept of down time and using it as a chance to do things that make me happy, and I’m so glad that I’ve leaned into this.
Diabetes itself. Yes, I am thankful for diabetes. Here’s why: I could spend all my time resenting it for (occasionally) making my life miserable. A long time ago, though, I chose to embrace diabetes for what it is. In turn, I’ve learned to be grateful for diabetes because of all it has brought and taught me…friendship, independence, discipline, and so much more. After all, this December 24th will mark my 25th anniversary with it – how could I not choose to find gratitude in something that’s been a part of me for nearly as long as I’ve been alive?
It seems especially significant that my departure from my role at a diabetes non-profit is just before the Thanksgiving holiday, which is a perfect time to express gratitude. So it is with zero exaggeration when I convey how grateful I am for this community, and in turn, for diabetes itself.
This post was originally published on Hugging the Cactus on October 8, 2018. I’m sharing it again today because as I sat down to write a new post, my blood sugar tanked…frustrating the hell out of me by taking away any and all creativity. But it did remind me of the timelessness of this post, and how the emotions of a low blood sugar can be so varied. Read on for more…
Previously, I’ve written about what it feels like to have low blood sugar. While many people with T1D feel the same symptoms as me when they experience a low, there are even more who experience a wider variety of emotions and sensations.
Renza, a T1D Twitter friend of mine, did a little investigating into how others would describe what it’s like to have a low blood sugar. She sent a tweet that read:
#Diabetes friends. I’m crowdsourcing (again). If you had to use ONE WORD to describe how hypos/lows feel to you, what would it be. Go!! #Hypoglycaemia
She received nearly 100 responses, which I’ve compiled into the below graphic.
Looking at this word collage is a bit startling because it represents the vast array of feelings associated with low blood sugar. Most of them are negative. A handful of them start with the prefix “dis”, which describes something with an opposing force. A couple of them relate to feelings associated with eating. And just about all of them can be summed up as sensations that I wouldn’t wish on anyone.
To me, this graphic serves as a stark reminder that diabetes is more than just a chronic illness that affects the body: It affects the mind, too.
Diabetes, diabetes, diabetes! That’s all I hear and think about, all day long, day in and day out…
I risk sounding like Jan Brady from The Brady Bunch with that opening line, but since November 1st, diabetes is THE only thing on my mind – thanks to NDAM 2022 kicking off, among other factors.
That’s why the timing of my latest endocrinology appointment was particularly fortuitous – until I sat down in that doctor’s office, I hadn’t quite realized just how desperately I needed help from my healthcare team. And it wasn’t until we talked through my specific concerns that I realized that I’m actually doing a lot better on the diabetes front than I had assumed…and recognition of that, plus my obvious desire to aim for even more improvement, has gone a long way in changing my attitude.
In fact, you could say that this appointment totally revitalized how I feel about my diabetes lately, and I’m thankful that it happened before I got swallowed up in the throes of burnout.
I went into the appointment hoping that I would gain clarification around my use of the Omnipod 5 system. I started using it a couple of months ago, and from day one, I remained confident that it would revolutionize my diabetes care. That’s only been half true since I started using it, as the immediate and most obvious improvement happened to my nighttime blood sugars. But my daytime levels, particularly after breakfast and lunch, continued to mystify me.
As I explained all this to my nurse practitioner, she listened without judgment – the first factor that went into boosting my diabetes spirits. What she said next was the second boon, and that was that I wasn’t alone in my struggle to adjust well to the automated insulin delivery. She validated that what I was feeling was normal, and that there were adjustments we could make as a team that would hopefully result in better utilization of the technology.
The third thing she did for me was put me in touch with someone at Insulet who would be able to answer my questions about the algorithm and fill in the blanks about the components of it that weren’t clicking with me. She made this connection for me before the end of our appointment, and witnessing her do so made me feel better about having one less hoop to jump through post-appointment…and goodness knows, when it comes to the admin side of diabetes, any assistance I can get on making phone calls or sending messages is a huge help.
This single, thirty-minute appointment took a huge weight off my shoulders that I’ve been carrying around all summer and fall this year. Of course, there’s still work to be done on my part, and little things like remembering to refills prescriptions are still my responsibility alone. But I’m feeling a lot more confident in my ability to make the progress that I’ve been so eager to achieve, and that alone is massive – and even more special, having happened during NDAM.
Today is the day – World Diabetes Day (WDD), which also happens to be the birthday of Sir Frederick Banting, who co-discovered insulin along with Charles Best one hundred years ago.
Today is the day to wear blue, the official color of diabetes awareness, and use the blue circle as a symbol of unity within the global diabetes community.
Today, and every day, I (as well as millions of others) do my best to live a life uninhibited by diabetes. It isn’t always easy, but the resilience, knowledge, and support it has unwittingly introduced to me has shaped me into a person who has diabetes, as opposed to a person who is controlled by diabetes.
Today, I celebrate my own strength as well as that of our community, and take time to reflect on this year’s theme: access to diabetes care. I acknowledge my privilege in having an abundance of that, and I am angered when I think about the millions of people around the world who lack it. As I look to tomorrow, and all the days after WDD and NDAM, I greatly look forward to and anticipate the day when medicine, technology, support, and care are all made available to the people with diabetes who need them.
“Pride” isn’t exactly the first word that comes to mind when I think of my diabetes. In fact, a whole slew of other nouns and verbs top my list of words that I associate with diabetes, including but not limited to: strength, resilience, acceptance, guilt, anger, worry, identity…
But I’m not writing this post to focus on those other words – pride is the one I want to talk about here, and I want to explain why I’m proud of my diabetes story.
Diabetes has always been part of my life; actually, from the moment I was born. This is because I have family members who live with type 1 diabetes, just like me. I don’t really remember what life was like before my own diagnosis, and I’m grateful for that because I never felt like it made a dramatic disruption (well, besides for making its presence known within my body on Christmas Eve, but I was four years old at the time and the holidays were definitely never soiled for me because of diabetes).
As I reflect on what it was like to grow up with diabetes, I also find myself appreciative of the fact that I’m hard-pressed to find any actual evidence of it besides doctors’ records. I’ve flipped through my parents’ photo albums countless times over the years and there’s not one photograph of me laying in a hospital bed, injecting myself with insulin, or showing any signs of diabetes except for maybe the stray Diet Coke can or blood sugar meter in the background of a picture. That’s just further proof that my diabetes was never the focus, it was more so about me living and experiencing a totally normal, loving childhood.
All that makes my sudden entrée into the diabetes community, beginning in my young adulthood, that much more surprising. The transition from living under my parents’ roof to suddenly being on my own in college was, in a word, jarring – so peer support was crucial for me in order to navigate this change successfully. It didn’t happen overnight, I had heaps of help along the way, and it was far from easy, but in my mind I’ve done a good job of handling my diabetes and all the responsibilities that come with adulthood in the last decade.
And that’s what I’m proud of. I’m proud of myself for getting to this part in my journey, the part where I feel well-equipped to live a life uninhibited by my diabetes. I’m proud that I’m able to talk about my diabetes experience with a sense of confidence and capability. I’m proud that I’ve learned how to advocate for myself in various settings, whether it’s with my healthcare team or in the workplace. And I’m definitely proud of myself for the way I talk about my diabetes story: It contains chapters that are unfiltered and authentic to me, and I think that they illustrate how I came to accept my diabetes long ago and use it as a source of courage in my daily life.
I hope that other people with diabetes can also find a similar sense of pride in their own experiences with this chronic condition.
Well, we’re (somehow) officially one week into National Diabetes Awareness Month (NDAM) 2022 and I’ve got to say…I’m feeling particularly aware this year.
Aware of the sheer scope of people affected by diabetes.
Aware about the amount of work that still needs to be done to defeat diabetes stigma.
Acutely aware that insulin and other necessary diabetes medications and supplies are too expensive and need to be more affordable/accessible to all.
Aware of how all the work (including but not limited to advocacy, peer support, and individual management of the condition itself) is done 24/7, 365 – not just during the span of one month.
You could say this makes me overly aware of the weight and significance of NDAM; and while this is certainly true, it’s also totally accurate that NDAM – and life with diabetes itself – is a marathon, not a sprint.
Thank you to a tweet by Mike Durbin that I saw on the first of the month for reminding me of this.
I agree with Mike’s advice to pace myself throughout NDAM, to get involved as I see fit, and to take a break if and when I need it. To an outsider, these words of wisdom may seem obvious, but to someone like me who lives with diabetes, works in diabetes, and immerses herself in the diabetes community, they ring particularly loudly and clearly during this chaotic period that has no shortage of spirit, heart, and good intentions.
So for the next 21 days, I’m excited about plugging away on my marathon’s path, and happy to take breaks here and there for myself so I can cheer on and support everyone else who’s on this journey with me.
“Your estimated wait time is less than 3 hours and 58 minutes.”
The dulcet female voice reported, before the recording transitioned to obnoxious elevator music.
A four-hour wait time? Surely, that couldn’t be true. I decided to stick on the phone for a little while longer in the hopes that a customer support representative would pick up in the next few minutes as opposed to the next few hours.
The elevator music faded and that same female voice said: “Your estimated wait time is less than 4 hours and 16 minutes.”
What the heck?! How did my wait time increase? I pulled my phone away from my ear and looked at it in utter disgust, before deciding I’d hang up because I simply didn’t have the patience to wait any longer – whether or not that meant 4 more minutes or 4 more hours.
This is just one example of the many phone calls I have to make in order to get doctors appointments scheduled, supplies reordered, and issues troubleshooted…and some days, I’ve got more resolve to wait than others. This just so happened to be a day where waiting felt unfathomable to me, but like it or not, diabetes doesn’t wait. It’s far more impatient and needy than I am. And this is a side of diabetes that I’m not sure other people really understand – the sheer amount of time it requires to be managed. It doesn’t care that I’d rather spend that time doing literally almost anything else (even cleaning the bathrooms sounds more enjoyable than waiting for 4 hours on the phone). Nope. I don’t have time to not have time when it comes to diabetes, which can be a frustrating truth to tolerate at times.
This blog post was originally published on Hugging the Cactus on October 27, 2021. I’m sharing it again today because it’s all too appropriate for the haunted happenings of today! Read on for my perspective on enjoying Halloween with diabetes…
Now that I’m in my late 20s, Halloween is less about the candy – though I still very much enjoy that part – and more about having fun dressing up, even if it’s just for my own entertainment. But this is also my first Halloween at my condo, so I hope that I get to see a decent number of trick-or-treaters and cool costumes.
Thinking about Halloween as an adult got me thinking of Halloween and haunted happenings from my childhood, and I’ve got to say, T1D never once got in the way of my enjoyment of the spooktacular holiday. Sure, there were plenty of other things to do besides trick-or-treat – I watched the Charlie Brown Halloween special (and still do) every year and I almost always make a point of carving a pumpkin or two each October – but collecting (and feasting) on candy was still a key component of Halloween for me that diabetes couldn’t take away. In fact, I think that it helped me feel a little more “normal”, like I had something in common with my peers without diabetes.
I’ve seen posts over the years about treats that T1D kids can be given in lieu of candy – things like pencils, sugar-free sweets, fruits or vegetables, and stickers – and that’s perfectly okay. But I think it’s also totally okay for T1D kids to have a break from worrying about diabetes and how it makes them different from everyone else every now and then, especially on a night like Halloween. I guess what I’m trying to say is that I’m really grateful that I always had super positive experiences around Halloween throughout my childhood that were never tainted by memories of anyone telling me I can’t eat a piece of candy or that I shouldn’t partake in the holiday because of my chronic condition.
So that’s why I’m excited to celebrate it just as I always have this Halloween weekend…though maybe with the added trip to the store the day after to see how much of a discounted low blood sugar/emergency candy stash I can accumulate.