Starting tomorrow, I’m on vacation for a week – not from my blog, of course, but from my real-world job.
I’m headed to the beach for the week. It just so happens it’s also the week of the first virtual CWD FFL conference, which I plan on jumping in and out of throughout vacation.
Like many other 2020 CWD FFL conference registrants, I have many mixed feelings about the conference turning virtual. I’m sad and disappointed that after a seven-year hiatus from conferences, I’m not able to make my IRL return to it this year. But I’m also exceptionally grateful that the CWD FFL staff made the calls months ago to turn virtual because they recognized it would be safest for our at-risk population. I’ve been in awe over how quickly they made the transition from an enormous in-person event to an enormous-er virtual event – they’ve proven how effective they are at organizing this sort of thing, and I applaud everyone in involved for their efforts.
My original plan was to attend the conference in-person this year while my family was at the beach for the week. But obviously, when the conference became virtual, I decided to tag along to the beach with my laptop in tow because I wanted the best of both worlds: family time and diabetes online community time.
Normally, I wouldn’t dream of packing a laptop along with my swimsuits and sunscreen, but even a trip to the beach looks a little different this year. I have no idea if my family and I will be able to even go to the same strip of sand and ocean without having to worry about things like too many people and not enough masks. We probably won’t be able to eat at many restaurants like we typically do on vacation; instead, we’ll likely cook a significantly higher percentage of our food at home. And we definitely won’t be able to peruse the shops like we have done every year since going to this particular beach town – we’ll have to be a little more creative when it comes to staying entertained.
It’s a weird adjustment to have to make, but I think we’re all in agreement that we’re just happy to have a safe place to get away to for a period of time. And I’m very glad to have the option to soak up the sun while also soaking up support, information, and friendship from the diabetes community.
Welp, I had my appointment with my endocrinologist on Monday.
In sum, it was mostly an uneventful affair, considering the times.
Immediately upon arriving, I was asked to put on a clinic-provided mask and to sanitize my hands. I checked in with the receptionist and sat in a chair in the mostly-abandoned waiting area, taking in the fact that seating was reduced in order to maintain social distance.
A nurse came out to bring me into my exam room and she took my blood pressure (good) and my weight (let’s not talk about it) before leaving to get my doctor. I was slightly surprised that she didn’t check my temperature with a contact-less thermometer, but I decided not to second-guess it.
My endocrinologist entered soon after…and she spent all of 15 minutes with me. She said that she reviewed the information I sent her from my Dexcom, as well as data from my pump, and said she couldn’t really detect any patterns besides some lingering lows in the late mornings/early afternoons. Again, I found myself a bit bemused by this observation, because I hadn’t picked up on it. She decided to adjust my basal for the 11 A.M. to 1 P.M. window (I went from 0.9 to 0.8 units for those two hours) and then asked me if I had any questions.
She didn’t check my feet, listen to my heart, examine my thyroid, or review my labs with me…all things that I’ve come to expect from previous endocrinologists.
My mild shocks of surprise from earlier in the appointment turned into something else: As the kids say, I was SHOOK…meaning that it was absolutely wild to me that she was already done with me.
I expressed my dismay with my A1c – it had gone up a little bit – and she told me that I was “still under good control”.
I said that I was befuddled by my weight gain – I’ve been working out like a fiend the last couple of months – and she suggested that perhaps it’s muscle.
I asked if she could recommend any blood sugar meters to me – I’ve had the same one for practically a decade and I worry about its accuracy – and she said that I should try a new meter from the same manufacturer that’s supposed to hit the market “soon”.
For every question or concern I brought up in that short span of time, she had an immediate, unsatisfactory answer that made me feel like my concerns were being brushed away.
But the real kicker? I’m not seeing her again for another seven months.
That’s right, folks. I went from having quarterly endocrinologist appointments for my first 22 years of life with diabetes to once every six months, and now in SEVEN months.
This means that I will have seen my endocrinologist once for the entire year of 2020.
That’s bananas to me, and a sign that my instincts from our first meeting were correct: This may not be the right doctor for me. I have no doubt of her intelligence or capability, but sometimes you just know when a given doctor-patient relationship isn’t the healthiest one for you.
The whole appointment – the brevity, the indifference, and the outcome – was almost enough to make me forget about my anxieties surrounding medical facilities during this pandemic…
Luckily, that’s what face masks, Clorox wipes, several squirts of hand sanitizer, and a thorough hand-washing or five are for.
“Full disclosure: I have diabetes, so I have to be extra careful and wear a mask and gloves.”
“Full disclosure: I have diabetes and it can be tricky for me to handle it when I’m drinking alcohol.”
“Full disclosure: I have diabetes but I love baking treats using regular sugar instead of sugar substitute.
“Full disclosure” – what is it about this phrase that has made me utilize it several times when meeting new people in the last couple of months?
The term itself means to reveal the complete, factual truth to an individual or individuals regarding a particular matter. But why have I associated it with my diabetes? Why has it become a conversation crutch for me in which I rely on it to introduce my diabetes?
I guess that’s because I’m trying to let the person or people that I’m talking with know that my diabetes is something that I feel I have to reveal to them in my own time. I want others to know that a lot of the time, my diabetes makes my decisions for me, particularly in cases that my blood sugar might be directly affected because I did or did not do something.
I also depend on the phrase as a bit of a segue – it transitions the topic of conversation to diabetes for at least a couple of minutes as I answer any questions that someone might have for me about it. It’s casual enough to reassure the other person that it’s no big deal, but it’s also a contextual clue that I’m about to disclose an important tidbit of information about myself.
I’ve always been interested in the language of diabetes – the words and terminology that are innately part of this chronic condition – and I’m well aware of the power of using certain words over others (e.g., I try to use “person with diabetes” instead of “diabetic” because it’s important to separate an individual from the condition). So I’m adding “full disclosure” to my personal diabetes dictionary because of my realization that it’s become a mechanism for me in conversation that I can use to smoothly introduce my diabetes.
This is my second time being nominated for the “best in blog” category. And words can’t describe how much it means to me – in the two and a half years since I started Hugging the Cactus, I’ve questioned countless times (truly, at least once a week) whether it’s worth all the effort it takes me to run this blog. Knowing that there’s at least one person out there who sees value in what I have to say is simultaneously humbling and motivating and makes me want to continue writing this blog for years to come.
Of course, I certainly didn’t start this blog to receive nominations or awards! While the recognition is incredibly lovely, there are actually a few different reasons why I started a diabetes blog…
To express my diabetes story in a creative format that works for me. Some people are gifted photographers and can curate amazing Instagram feeds through which they share their diabetes stories. Others might be video wizards and choose YouTube as their diabetes-storytelling platform. But me? I choose writing a blog because, well, I’m a writer. I’ve always loved words – reading, writing, and speaking them, so this is what makes sense for me.
As a form of therapy. Diabetes evokes a lot of intense thoughts and feelings. It can be hard to voice every single one of them to a family member or a friend. So that’s what I use this blog for: an outlet through which I can sort through my more complicated diabetes emotions by writing about the experiences that create them. And let’s be real, it can feel amazing to just vent and let it all out in a blog post.
To connect with other members of the diabetes online community (DOC). This is probably the best-known reason why I started this blog – social media is great, but sometimes it can be highly impersonal. On some platforms, we’re showing the filtered versions of our lives and perhaps choosing to only hit the highlights instead of including the lows along with them. I feel like on this blog, I can write about the good, bad, and the ugly, and all of it has the potential to resonate with different audience segments. To me, that’s really powerful and it’s resulted in some of my stronger DOC friendships.
To be an advocate. I’ve always wanted to be a diabetes advocate, but I was never really sure how I could be an effective one. I know that advocacy comes in many forms, and I knew that the best type for me would be one that involved my writing. So sharing my diabetes experiences on my blog is one way that I’m an advocate, but I’ve amped up my efforts recently by becoming a digital advocate for T1International. Blending my blog with their resources has only enhanced my ability to advocate for diabetes and educate others in addition to myself (because even after 22 years of diabetes, I still learn new things about it all the time), so I’m really grateful for my partnership with their organization.
When I’m dealing with blogger burnout, I think it’ll help me to look back on this little list to remind myself of my “why”. These are the reasons why I started and continue upkeep of Hugging the Cactus. And you’re a reason why. For that, I thank you.
And I’m not exclusively talking about endocrinologists here, because really, they’re the ones who specialize in diabetes…so, you know, they are supposed to just get it.
I’m talking about the other medical professionals that people with diabetes might see in addition to their endocrinologist.
Take me, for example…I see a primary care physician, a dentist, an allergist, an OB/GYN, and an ophthalmologist.
And only a couple of those specialists really understand what it means to have a T1D patient in their care.
For example, I saw my allergist back in February (before all this COVID stuff) to see if she could switch me to a nasal spray that cost less than the $45 per month I was paying (because let’s be real, if I can save money on a prescription, I’m going to do it). The appointment was supposed to be quick and easy, but it turned into a two-hour affair (!) because she was concerned about my asthma.
I highlighted my issues with asthma in a post from January. The big takeaway from my most recent spells of wheeziness is that the inhaled steroid I was taking to deal with it at the time was making my blood sugar skyrocket, and I felt like I had to choose between breathing comfortably and maintaining healthy blood sugar levels…not an ideal this-or-that scenario by any standards.
So when my allergist detected some “squeakiness” (her words, not mine, and it makes me laugh because that’s a cute way to refer to the rasping gasping of asthma) in my lungs when she was listening to my breathing with a stethoscope, she asked me to catch her up on my history with asthma. When I did, she immediately understood my reluctance about taking the inhaled steroid, and prescribed me a new medication that will reduce my asthma symptoms as well as some of my allergy symptoms.
I’m never going to be thrilled, per se, about adding yet another medication into the mix: It’s just one more thing that I have to remember to do each day at a certain time. But what did excite me about this prescription is that I’ve noticed a real difference since I’ve started taking it. And more importantly, I felt heard by my allergist. She didn’t write off my concerns about the inhaled steroid, she took extra time during the appointment to run tests, and we had a back-and-forth dialogue in order to get to the bottom of things.
It was a stark contrast to the appointment I’d had with a nurse practitioner from my PCP’s office in which I was prescribed the inhaled steroid DESPITE having voiced my concerns, and the appointment was over within minutes.
It’s a bummer that not all medical professionals “get” diabetes, but it’s also a reminder that as patients, we can make a difference by continuing to advocate for ourselves until they do understand.
My first endocrinologist appointment of the year is coming up next week and it’s got me feeling allllllll sorts of emotions…
Anxiety. This tops the list because, well, I haven’t been to a medical office since the coronavirus outbreak started. My doctors have either asked me to reschedule my appointments, or I’ve been able to see them virtually. I know that my endocrinologist’s practice has many protocols in place now to make the experience as sanitary and safe as possible, but it still does put me on edge.
Fear. I’m afraid of what my A1c will be. Yup, I’m actually scared to know this reading that should, in reality, help me manage my diabetes better. I know, I know – the A1c is just one way to measure how well I’m taking care of my diabetes, the one number isn’t a total reflection of my “success”. But I can’t help but be worried that I’ll be disappointed by my results, even though I know I’ve tried my best in the last few months to achieve one that makes me happy.
Skepticism. The last time I saw my endocrinologist was just a couple days after Christmas…and it was my first meeting with her. It was her suggestion that I return in six months as opposed to the usual three, which I thought was a little weird, but I just went with it. However, I’m now wondering if this was the right call, because how on earth is she even going to remember more than six months later? I’m concerned that we’ll spend most of our time catching up on things that I didn’t want to discuss during this important follow-up, but I’m cautiously optimistic that it will go better than I’m currently expecting it to go.
Curiosity. I’m HELLA curious as to what my doctor will say about my diabetes management in the last six months. Will she tell me that I’m doing a good job? Will she scold me? Will she take the time to review my latest lab results? Will she help to address my needs so that the next time I see her, I’ll have less trepidation over our visit? I’m very eager to find out the answers to those questions.
Listlessness. Perhaps the most unusual feeling I’ve had about this appointment is…lack of interest in it. I’m nervous about physically getting out of the house to go to it, and I’m wondering about the outcome of it, but the mere thought of going right now just isn’t sparking much of anything within me. I haven’t really thought about the questions I might ask her during the appointment; instead, the only thing I’m truly focused on is the logistics of getting there and actually sitting in the appointment. Otherwise, I’m just feeling a little tired when I think about it, like I’ve already gone and it’s drained me of my energy. This could be due to some burnout that I suspect I’m contending with at the moment, but for now, all I know is that unless I leave the appointment feeling positive in some fashion, then this whole “six month follow-up” thing just might not cut it for me and my own diabetes care and management routine.
I’d never tried competitive eating before, but there I was, tying a bib around my neck and preparing to eat as many pancakes as I could within a certain window of time.
Sounds like a T1D’s nightmare, right? Attempting to bolus for an unknown amount of high-carb food that will be consumed within a matter of minutes…
…well, that’s because it was this T1D’s nightmare!
Yes, I had an actual dream (but I’m calling it a nightmare because of what happened when I woke up) that I was in a pancake-eating competition. So bloody random, weird, and kind of funny. Unfortunately for me, I never found out how I fared in the competition, because just as it was about to begin I woke up to the sounds of my CGM (both my receiver and the app on my phone) buzz-buzz-buzzing.
Blearily, I rolled over in bed to silence both of them…but my eyes opened wide when I saw what was on the screen(s).
284 with an up arrow!
Immediately, I grabbed my meter so I could confirm that I was, indeed, that high. One finger prick later, I discovered that yes, I WAS that high – just over 300, in fact.
I was absolutely bewildered. It made no sense that I was so high. I’d been 85 just before bed and had a small package of animal crackers (15 total grams of carbohydrates) to ensure stability throughout the night. That was hours before, at around 8 P.M., so they should’ve been through my system by the time I woke up to the high, at 2 A.M. Moreover, my high alarm on my CGM is set to 180, so I’d slept through numerous alarms. That was frustrating, but I’m relieved I did eventually wake up to correct the high…the alternative, staying in a deep sleep and waking up to a sky-high number to start my day, was definitely worse.
I was struggling to make sense of the high but I knew it was more important to treat it and stay awake until I knew I was coming back down. That way, I could rule out my pump as the problem. Sighing, I took my bolus, got up out of bed, grabbed a cold water bottle from the fridge, and trudged back up the stairs to prop myself up and watch some TV to make the next hour or so go by faster.
By 3:30 A.M., I’d watched three full episodes of Sex and the City (thank you, E! Network, for playing that show at such an odd hour) and my blood sugar had tumbled back down approximately 100 points. I felt like it was now safe for me to go back to sleep, so I drifted back off to dreamland…and continued having really weird freakin’ dreams for the rest of the night (one involving me auditioning to be the voice of Moana, the Disney princess, in the movie…I can’t even begin to fathom how or why I dreamt about that).
Days later, I still don’t know how the high happened. But I think I’m closer to a conclusion: It must’ve been all those damn pancakes that I ate in my dr- I mean, nightmare.
This post was originally published on the T1International website on June 15, 2020, and is written by Sydnee Griffin. I reached out to Sydnee and asked if I could re-post it here because Sydnee’s words opened my eyes to the medical side of racism and the importance of supporting my Black friends (and all Black voices) with and without diabetes. Thank you for sharing your story, Sydnee.
My diagnosis story is so similar to numerous other type 1’s, I almost never tell it. I had the weight loss, the extreme thirst, the irritability, and the constant hunger. Paired with abdomen pain that was similar to that of menstrual cramps, all of these things signaled ‘puberty’ to my 16 year old brain. I had been living with the discomfort for so long, it was no longer new to me.
I remember a handful of things about being admitted to the hospital and the time I spent there. The first is the hospital staff telling me if I had gone home and waited for the test results to come on Monday, I probably wouldn’t have made it through the weekend. The second is the amount my family needed to advocate for my care during my stay. From the office of my primary care physician to the hospital itself, my mother had to speak up in order for me to get the treatment I needed and in a timely manner. Though the initial night of the hospital is fuzzy, I remember my mother going back and forth with the ER technicians imploring that I needed to be put on an IV ASAP. She noted that I had lost significant color and all of the questioning could be done while I was hooked up. The back and forth seemed to go on for hours. When I left the hospital I remember wondering, “Why did my mom have to beg those people to do their job when I was visibly sick?” A few years later after I had dealt with numerous visits, checkups, and insurance calls, I became aware of the medical side of racism.
A quick Google search will take you to a few sites that define the term medical racism (i.e. racism and prejudice that carries over into the medical field) and even more articles about the instances occurring. What do Beyoncé, Serena Williams, and I all have in common? We all have experienced medical racism that could have easily cost us our lives – and so have numerous other Black people. It’s one of the things I don’t share with my white friends that I’ve made online who have type 1 diabetes.
Another occurrence I see fairly often with my non-white friends with diabetes is questioning over their diagnosis. My friends who look like me are familiar with the question, “You’re type one? Are you sure?” This is a question that my white friends are rarely ever asked. This is because type 2 diabetes is more prevalent in communities of color, but also because type 1 diabetes organizations and type 1 diabetes social media accounts often promote the image of the skinny white kid as the face of type 1 diabetes.
I recently made an Instagram account to help connect with others living with type 1 diabetes and to become a face of the community. Before I got involved, the biggest thing I noticed was the lack of Black representation on diabetes Instagram. There are a handful of them that I follow, and it’s great that they’re there – but I had to scour Instagram for them. So even, as they exist, they’re not getting nearly the same amount of attention or recognition as their white counterparts. And it’s easy to say, maybe their content isn’t as engaging (you’d be wrong, but let’s entertain the idea!) – you mean to tell me not a one of them is as popular as your local white type 1 blogger? I can search through the hashtag #t1dlookslikeme and not find a single Black person under the “popular” posts.
These are the things that contribute to both misdiagnoses in the doctor’s office and stigma outside of the doctor’s office. These are the things that need to change and the things that we can change that don’t involve getting a degree in medicine.
How can we change them? For starters, follow and highlight local Black and non-Black POC on social media. Listen to their stories, speak out and support them. Right now, I’m seeing a ton of white people with diabetes online who are complaining about people wanting them to speak up on the protests and police brutality occurring now. Some see their account as something that’s only for diabetes content. Hearing that is really disappointing, as I’ve pointed out to quite a few of them. Because I’m Black and diabetic every day.
I have to worry about police brutality in addition to blood sugars and health outcomes. So when they tell me they don’t think the two are related, or “diabetes content” it really shows me where their head is at. It is a privilege to solely be marginalized with your one disability. I have had to grapple with myself as a Black person about whether or not I am doing enough with signing petitions and donating, because I can’t be out protesting due to living with diabetes and COVID-19 still being prevalent. It is a privilege to not have to worry about diabetes and COVID-19 and a privilege to not have to worry about being racially discriminated against in a healthcare setting or any other setting.
To my Black diabetic friends – I am here online if you need an ear, or support, or help in any way. Please don’t feel like you’re alone. We are here, we are strong, and we aren’t going anywhere. For anyone looking to get educated right now, myself and lots of other Black social media users are posting helpful resources on how to donate and support even if you’re immunocompromised.
Don’t think that you as a white person or non-Black POC need to necessarily make a statement. There are tons of Black voices you should and can amplify in this time. We are similar in so many ways when it comes to this disease, but we are also different in so many as well. You have Black friends. You have friends with diabetes. Both see you when you don’t support them. They notice as you advocate for affordable insulin to save their lives, but don’t declare that their Black life matters. You need to know their lives are in danger in more ways than one. Support them through this like you would support them with any other diabetes related struggle.
Yesterday was Father’s Day, but today I’d like to take the opportunity to give a shout-out to my dad – and all fathers – who care for children, young, fully grown, or any stage in between, with diabetes.
All dads, generally speaking, don’t get enough credit for all that they do for their families. I know that I am fortunate enough to say that growing up, and to this day, my dad (and mom) provided me with everything a child could ask for: a loving home, plenty of food to eat, and endless support, to name a few.
But on top of that, my dad took care (and continues to take care) of both his child and his wife with diabetes. He does everything in his power to make sure that we want for nothing and has dealt with alllllll the highs and lows – and everything in between – over the years.
My dad has always been the “fixer” in the family. When a problem pops up, he just wants a solution to it. So it’s no wonder that he’s felt helpless on the occasions that there’s literally nothing he can do to help with diabetes except wait for the insulin or sugar to kick in (depending on whatever the case may be).
But the other thing you should know about my dad is that he gives everything in his life 110%. Professionally and personally, he never half-asses anything. And I’ve always found that extremely inspiring. He’s a role model for me in that his give-it-your-all attitude and work ethic has taught me to give my diabetes my all. For that, and so much more, I’m thankful.
My dad – just like my mom – is the real MVP. He has done so much for the both of us during this stay-at-home situation, between picking up groceries each week and running all of our errands for us in order to limit our time out of the house. My dad deserves credit, and so do all other T1D dads: You’re doing great. As you help us navigate this new normal, we realize that there’s already so much you do for us. You’re doing your best in these weird times and your loved ones see that and appreciate it more than you could ever know.
Thank you to all the dads out there, but particularly mine: Thank you for helping to keep me grounded during this “challenging time”, and for, well, everything else you’ve done for me in my 27 years (both the non-diabetes things and the diabetes-related things).
The summertime season is in full swing, and now that it’s here I’m thinking of the various ways my diabetes is more pronounced in the warmer weather. It’s much more visible, leading to many more questions, but what are the cues that give it away to others? I thought of four…
Visible sites. Shorts-and-t-shirts weather makes it much harder to place pods or CGM sensors in discrete locations. And if I’m going to the beach? There’s no way that I can even attempt to hide my devices. That’s probably why I make them even more obvious with…
…Pump and sensor art. I’ve written about Pump Peelz and GrifGrips in the past – they make adhesives and skins that are specially designed to fit pods, PDMs, pumps, meters, and more. The products they make are truly little works of art for diabetes devices, and I like to make sure all of mine are decked out in the summer months so I can show off tech that’s not only functional, but also stylish.
Gadget tan lines. Or if you’re like me, it’s more like sunburn lines. That’s because each summer, without fail, I somehow manage to neglect the space around my pod or my sensor, so when it’s time to remove it, there’s a huge red circle around the perimeter of where the device was situated. Maybe this year I’ll actually learn my lesson and take the time to apply sunscreen properly so I can avoid the very not-cute sunburn circles.
Travel coolers. This is probably the least obvious sign of diabetes in the summertime, but to those in the know, coolers meant to protect insulin are pretty recognizable compared to regular coolers. Whether it’s a Frio cooling pouch or another brand of insulin cooler, people with diabetes tend to carry these throughout the summer months in order to prevent insulin from spoiling due to heat exposure.