They didn’t say that to me, but they didn’t have to…it was written in bold all over their faces.
Recently, I dined outside with people who are close to me (I’m not going into specifics as to who exactly they were to maintain some level of discretion). I was explaining to them that come the winter season, I probably won’t be dining out much out of COVID concerns.
I’m just not ready to dine indoors yet. In fact, since March, I’ve only set foot into a physical store, dwelling, or other establishment a dozen times. For me, the risk associated with spending time inside when it’s completely avoidable just isn’t worth it.
But what sucks about this is the judgment I receive from others. Just like I did in this scenario, the looks on their faces make me feel like I have to defend myself. I wanted to scream at them, “you try having a chronic illness and dealing with it during a global pandemic!”…but of course, I’d never do such a thing, and I’m very glad that they don’t have to worry about that.
I do wish, though, that they – as well as other people who are quick to judge individuals like me who are scared and overly cautious these days – would use a little more grace and humility when conversing with those of us who are high risk.
Please try to put yourself in my shoes.
Please understand that not only am I considered high risk, but I’m in direct contact with loved ones who are also considered high risk.
Please know that, yes, I do have a desire – a very strong one – to get back out there and do “normal” things.
But think about the things holding me back…a chronic condition that requires a lot of my time and energy, for starters.
And think about how there are millions of other people like me who share this great responsibility for an underlying health condition that they didn’t ask for on top of a great fear.
There’s no cutesy lead-in to this post…I’m going with a very straightforward statement here:
Diabetes has caused me to have a very weird and strained relationship with food.
How? Oh, let me count the ways…
Diabetes has positively impacted my relationship with food because it has helped me understand the importance of nutrition. I’ve had to learn how carbohydrates, proteins, and fats affect my levels, as well as the role that the glycemic index of foods play into the picture. I’m also grateful that diabetes has caused me to realize there are limits – I can’t mindlessly eat huge quantities of food (though on occasion I do, more on that in a minute). I must measure everything out, and I believe that this forced sense of portion control has helped me maintain a (mostly) healthy weight.
But diabetes has also, absolutely, negatively impacted my relationship with food.
For starters, I can get so fed-up with having to account for every single morsel I consume in a given day – I resent having to take insulin for foods I’d otherwise find enjoyable. Plus, there’s a lot of guilt associated with my regular food consumption. “Should you eat that?” is question I hear not just from others, but from myself as I have to think about whether certain foods are worth not just the calories, but also the amount of insulin that I have to dose for it. And don’t even get me started on how literally unsavory it is to have to eat food when I’m already full but dealing with a low blood sugar…
In a word, my relationship with food is complicated…and I don’t hesitate to blame my diabetes for that. Don’t get me wrong: At the end of the day, I loooooooove food. Really, there’s very few things that I don’t (or won’t) eat or at least try. I enjoy consuming a large variety of foods and I like to eat veggies almost as much as I like eating chocolate (that may be a bit of a stretch, but I think you get my point).
It’s just unfortunate that my diabetes forces me to overthink every food choice that I make. So I’m that much more hopeful for the day which I can eat food without having to think twice about it, without having to feel guilt, shame, doubt, anger, sadness…nothing but pure enjoyment.
I think I just had the best doctor’s appointment of my life (so far).
And the most incredible part about that statement? This was my very first appointment with this particular doctor and she absolutely nailed it. I’m almost bummed that I only have to see her annually…
Let me back up a bit. This doctor is my new ophthalmologist (eye care specialist). I switched to her because I’d seen my previous one for just about my entire life, and while he was unquestionably an excellent and knowledgeable doctor, we had some…personality clashes that made my yearly visits with him not so great. It wasn’t like we had a breaking point or anything during my last appointment with him, I just decided that now was the time to make the switch to someone else.
So I did. In August, I contacted the new doctor’s office and set up an appointment. I also wrote to my old doctor and requested the last few years’ worth of notes to be faxed to the new doctor. I’d never written a formal letter like that before, but I kept it short, sweet, and professional by informing him that I’d be seeing a new doctor, providing him with her location and fax number, and thanking him for taking great care of me over the years.
Making the switch was as simple as those steps – I had nothing else to do but show up for my appointment on September 1.
When I arrived to the office, I took note of all the social distancing protocol in place. There were only a dozen or so chairs spread out throughout the waiting room. There were dividers in place and stickers on the floor to mark six or more feet apart from the next person in line. The receptionist took my temperature with a contact-less thermometer and of course, nobody was allowed into the area without a mask.
Pleased with the careful measurements the office had taken, I waited for a few minutes before being called into an exam room. A nurse gave me a brief exam and had me read an eye chart using my current glasses prescription, then she dilated my eyes before leaving to go get the doctor.
Within a couple minutes, the doctor entered…and it was nonstop chatter from the moment she came in to the moment I left the practice. Her bubbly energy was infectious and it was obvious I was speaking to someone who truly loves her job. She let me know straightaway that her son is also a T1D right around my age, so she’s more than familiar with every facet of caring for it (with, of course, a special focus on eye health).
We talked a little about everything from insulin pumps, careers, CGMs, my broken bone (she was rocking a brace on her foot, so we shared a laugh over our injuries), and our studies in college. And yes, eventually we did get to the eye exam component, which took barely 60 seconds. She exclaimed with enthusiasm over my “gorgeous” eye health and told me that she is a T1D cheerleader, meaning she recognizes how hard we work to take the best possible care of ourselves.
Absolutely amazing, right?!
The appointment ended with me mentioning my appearance in Dexcom G6 advertisements, and she requested that I send her a clip via email. I did so shortly after I got home, and received the loveliest response back:
“You are spectacular. See you next year!”
I swear, I’ve never left a doctor’s appointment feeling so wonderful about myself. It’s a credit to all physicians like this one, who are passionate about what they do, happy to really engage with patients, and demonstrate in-depth knowledge of medicine and the human body.
“OMG, it sounds like you have super brittle bones. What’s up with that? Is it because of your diabetes?”
I sighed into the phone, grateful that the telehealth professional couldn’t see my annoyed facial expression.
“Oh no, it’s nothing like that. I’m just clumsy!” I tried to keep my tone light and threw in a little laugh for good measure. She went on to say something about how I might want to consider taking calcium and/or vitamin D supplements, but while she went off on her tangent, my mind wandered.
What does bone health have to do with diabetes? And why does it seem like everyone assumes that all of my health issues are directly related to my diabetes?
Truthfully, it’s a safe assumption – the vast majority of the time, anyways – that my diabetes does have some sort of influence over the rest of my health. Plenty of studies indicate that comorbidity is common with type 1 diabetes (in other words, other conditions are diagnosed alongside the primary condition, in this case, diabetes).
But is my diabetes the cause for my seasonal asthma? Is it the reason I’m allergic to cats and dogs? Did my diabetes create the digestive issues I’ve faced since childhood? I don’t know, maybe. There could be a tenuous connection there.
On the flip-side, is my diabetes responsible for my (almost always) excellent blood pressure? Does it have anything to do with my slight arrhythmia? It’s not as clear-cut in those areas; in fact, I’d be hard-pressed to find a real cause-and-effect relationship when it comes to those things.
So do I blame my diabetes for “brittle bones”? Heck no. I blame my breaks in the last couple of years purely on myself and my tendency to rush around in an uncoordinated manner. And on top of that, based on how quickly I healed from my last break, I expect my recovery to go as well this time around, and I doubt that’d be the case if I genuinely had brittle bones.
This time around, it’s not my diabetes’ fault, that much is clear. And it’s also pretty obvious that I need to exercise a little more patience with health professionals who 1) don’t know me well and 2) are just trying to help me improve my overall health.
It’s a gentle reminder to be a touch more graceful in how I move…and how I respond to innocent queries about my diabetes and other health conditions.
I still can’t believe that I broke my wrist…again. At least I changed it up a little this time and broke my left one instead!
A broken bone is a broken bone, but my healing experience has been very different compared to last time.
For starters, when I broke my right wrist a couple of years ago, it was in the middle of winter (I slipped and fell on ice in the driveway). I was put into a cast that I wore for 4-6 weeks that felt like 4-6 months because of the challenges I faced. Between attempting to become ambidextrous as I built up strength in my left hand and taking a solo trip to Atlanta, Georgia to film a commercial for Dexcom, I did my best to work around my injury…even though I felt incredibly defeated in the face of the limitations it imposed; specifically, I felt that I couldn’t keep up with the exercise regimen I’d worked so hard to establish. I feared that I’d exacerbate the injury, so I didn’t even try to work around it.
This time around, it’s summer. The break happened after I tripped and fell down some stairs (klutz, much?). I’m wearing a brace for 3-6 weeks instead of a cast: My orthopedist said it’d be much more comfortable versus a cast, which can get seriously stinky and sweaty in the warm weather. And rather than stressing about how I’ll continue to exercise while also allowing myself to heal, I’ve made modifications that have kept my body, broken bone, and ‘betes happy.
I guess I learned from the last broken bone that it’s better to keep moving in some way, shape, or form than dwell too much on the injury itself. In other words, I’ve been trying hard to focus on the things I can still do while I’m wearing a brace as opposed to the things I cannot do. For example, my broken wrist can’t stop me from taking daily walks or, when I’m feeling more ambitious, going for an occasional run. It can’t stop me from making the shift to lower-body-focused workouts or core strengthening routines. I refuse to let this injury be the reason that I get sloppy with my nutrition or workout routines, and it certainly isn’t an excuse to become unmotivated in terms of my diabetes care. If anything, it might just be the reason that I tighten things up and make some much-needed improvements.
They say that when life gives you lemons, make lemonade…so I’m going to try, because a broken wrist won’t stop me from getting something good out of this less-than-ideal situation.
This post was written by Quinn Leighton and it was originally published on the T1International blog on July 8, 2020. June may have been Pride Month, but it’s important every day to understand the challenges faced by the queer and trans communities on a daily basis and raise awareness. Thank you to Quinn for sharing your story, fighting for LGBTQ+ justice, and supporting efforts to make insulin available and affordable for all.
I remember stepping up to the counter to check into an appointment with a new medical provider, when the woman at the desk asked me to step to the person to her right saying to her colleague, “Can you help this…” I had to finish the sentence for her, “person. I’m a person.”
I have often felt fear and uncertainty as a person living with Type 1 Diabetes: when I wake up in the middle of the night confused, reaching for my glucose tablets because my blood sugar reads between 40-50; when my spouse is driving me to the ER because I can’t stop throwing up or get my ketones down while I’m home sick with the flu; and of course the overwhelming financial burden we face daily and monthly in order to stay alive and as healthy as possible.
All of this is assuming we don’t face additional barriers such as discrimination, bias or mistreatment the moment we walk through the front door of a pharmacy, or a provider’s office simply based on who we are and how we show up in the world. For people in the LGBTQ+ community, such as myself, this fear is real and based on lived experience. I am queer, non-binary and married. I’m also white, and acutely aware that while my experiences have filled me with anxiety and have led at times to delaying medical care, I recognize I have not experienced medical racism in the way an LGBTQ+ person of color likely has.
Delaying care due to these fears as a queer or trans person is not uncommon in any medical setting, however if you delay care living with diabetes, it can lead to life-threatening complications or even worse. It’s imperative that LGBTQ+ people living with diabetes and other chronic illnesses have the security, affirmation and resources to access the care they need.
We also know that LGBTQ+ people, particularly transgender and non-binary people make less money, despite having the same, if not higher levels of education as their cisgender, heterosexual peers. Even with a patchwork system of employment protections across communities, states and now federally; discrimination in the workplace is still very real. Among LGBTQ+ people, cis-bisexual women and transgender people have particularly high rates of poverty at 29.4%.
Together we can work toward greater health equity, but collectively, we must recognize the disproportionately high impact of poverty, violence, prejudice, mental health issues, discrimination and fear that so many LGBTQ+ people face living with diabetes. We must recognize LGBTQ+ people often do not receive the same level of treatment or care that non-LGBTQ+ do, and LGBTQ+ people of color – particularly transgender women of color – are at the highest risk of discrimination, mistreatment and fatal violence.
Understanding these inequities is paramount in moving forward in advocacy for affordable and accessible insulin for everyone who needs it, particularly those most vulnerable to bias, mistreatment and discrimination. This includes healthcare policies protecting people with pre-existing conditions and protecting LGBTQ+ people from discrimination when accessing healthcare. Efforts to repeal or rollback protections put into place through plans such as the Affordable Care Act that seek to provide care to people who need it most, particularly during a pandemic, is simply cruel and will only result in more harm and negative health outcomes. Non-discrimination protections are critical in providing the care needed for so many LGBTQ+ people living with a pre-existing condition such as diabetes, who already face a gamut of uphill battles in other areas of daily life.
Queer and trans communities are formidable. They overcome extraordinary obstacles to gain economic self-sufficiency, put a roof over their heads, maintain their health in the best of conditions, and simply exist and live in this world. What I’ve really noticed most is the courage and resiliency to navigate these barriers while celebrating community and showing up as our true and whole selves.
I recognize structural and systemic change won’t happen easily or quickly; however, I am hopeful that the movements around us will support communities of color, particularly black and indigenous people fighting for their lives and Asian people under attack due to prejudice and misinformation surrounding the COVID-19 pandemic. I am hopeful people will elevate their support of LGBTQ+ people and those most vulnerable within our community while working to make insulin affordable so that no other person living with diabetes is forced to make life-threatening decisions. And it is my hope that this momentum of support will carry us forward toward justice.
August is just ’round the corner (!!!) and that…feeling is creeping up on me.
That uncomfortable feeling that’s intensified by hot and humid weather.
That annoying feeling that happens when my CGM sensors and insulin pods seem to fall off my body and wither in the summer heat – the adhesives are no match for the sun’s merciless rays.
That restless feeling that creeps up when it’s too damn muggy out for my daily afternoon walks…the walks I rely on to help regulate my blood sugars and my mental health.
That fed-up feeling that’s the result of me going outside for 15 minutes, hoping to get some fresh air, only for my blood sugar to drop rapidly thanks to the high temps.
That creeping feeling of needing some kind of relief: Relief from the hottest days of summer and from every facet of diabetes management becoming just a bit more complicated because of it.
And now that I’m acknowledging how much I’m craving relief, it honestly just sounds like I’m going through some genuine diabetes burnout.
It’s not surprising: This year’s been a wild one for me (and let’s face it, the world) in multiple ways. Overall, my stress and anxiety levels are up and my motivation to do everything that I “should” do to manage my blood sugar levels is way down. I’m very aware of what’s good about my diabetes management lately (such as my daily exercise routines) and what’s maybe not so good (my constant desire to snack on carbs and not measure them out and/or bolus for them).
I’m hopeful, though: Maybe as I continue to cope with my seesawing emotions and blood sugars, they’ll find a way to balance out on their own and be a little less intense…just as the weather will become once Autumn rolls around.
Every summer, I spend at least a handful of days at the same beach town. These trips have created so many memories for me, my family, and friends over the years. But back when the pandemic started and travel came to a standstill, I wondered whether it would even be possible to head up to my ocean-side oasis this year. After all, many states have restrictions about visitors right now, and protocols aren’t always clear. Luckily, though, due diligence was done before it was determined that yes, my family and I could still go on our trip, though we knew it might look a little different compared to our trips in the past.
Based on my experience, I’ve come up with a few dos and don’ts when it comes to traveling with diabetes during this pandemic:
Do wear a mask. Please, for the love of everything you hold sacred in life, wear a mask when you’re out in public. It’s not about political leanings or agendas: It’s about protecting yourself and the ones around you. I kept a mask on at all times when I was out and about and only removed it when others were more than six feet away from me. It was the smart and sensible thing to do. Just because I was by the beach for a week doesn’t mean that the pandemic wasn’t a reality for me. As someone who has an invisible illness, I know that I appreciated it (and still do) when I saw others wearing masks because they were not only protecting themselves from exposure, but they were also protecting me from being exposed to them.
Don’t neglect what works best for you and your diabetes when you’re at home while you’re away. I exercise in some way, shape, or form almost every single day. So being on vacation didn’t mean I was taking a break from that and my job. On the contrary, I can’t remember the last time I was so physically active, and my blood sugars responded well to that…at first. Then I started to neglect the fact that my diabetes does best when I eat a moderate amount of carbs per day (maybe around 120 total)…I definitely ate way more than that and paid the price with some sky-high numbers. I wish I’d been more mindful of my diet, but oh well, I learned from it.
Do have extra supplies on hand at all times. Besides all of my extra diabetes supplies, I also had access to an abundance of PPE (gloves, masks, hand sanitizer) throughout my trip. It brought me peace of mind knowing that I was prepared and wouldn’t have to worry about running out of any of these items.
Don’t go somewhere or do anything that makes you feel uncomfortable. This is absolutely common sense under normal circumstances, but times are far from normal now. It was important to me that my family and I have discussions about what we did each day on vacation so we could make sure everyone was comfortable with the plan: the number of people that might be around to us, where to eat, what to do, how diabetes might come into play…we talked about it all and I think it helped assuage some of our worries.
Do think outside the box when planning daily activities. If you’re like me, you’re probably more than a little wary about spending prolonged periods of time around groups of people other than the ones you’ve quarantined with. This meant that I was not looking to eat inside at restaurants, go into stores, or even use public restrooms (which may or may not be an extreme view of mine). So what exactly did I do when on vacation? Well, for starters, I hit the beach nearly every day. I hit the jackpot weather-wise because it was a little too cool to be totally comfortable on the beach, so it was never crowded and I could easily stay more than six feet away from others. In keeping with the “outdoors” theme, I visited a state park, rode my bike around town, and went for a hike while I was away. I ate outside at a few different places that handled social distancing rules very well, and of course, I attended the Virtual Friends for Life Orlando conference. All of that kept me pretty busy, and I found that I didn’t really miss hanging out indoors.
Don’t forget to enjoy yourself. At the end of the day, a week off from work is a week off from work! Despite my fears about going on this trip, I’m really glad that I did because a break is exactly what I needed. My anxiety is much less intense when I’m by the beach, and I’m relieved that the weirdness of the world lately didn’t take that away from me.
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.
This post was originally published on the T1International website on May 6, 2020, and was written by Rosie Collington. I am sharing it on Hugging the Cactus because to be quite frank, I never understood the many issues surrounding insulin price increases. After reading this post, I had an “aha!” moment as I finally began to understand how the profits from insulin price increases are distributed. It’s an important issue to understand: with increased awareness comes an increased drive to make change.
Patients living with type 1 diabetes have known for years that the list price of insulin in the United States has soared. They’ve paid the price – in insurance premiums, in upfront costs, and also, tragically, in some cases with their health.
But until recently, it has been difficult to prove just how much the list price of insulin has increased, and what proportion of the higher costs for patients have gone to the three main insulin manufacturers – Eli Lilly, Novo Nordisk, and Sanofi – versus other companies in the US prescription drugs supply chain, like insurance companies, pharmacies, and pharmacy benefits managers. Information about pricing negotiations is considered a trade secret, meaning that the actual data is difficult to access. Instead, researchers and patient groups have had to more or less rely on guesswork to estimate the value of price increases, or the highly selective data published by the companies themselves, which do not paint the full picture.
The lobby group representing pharmaceutical companies in the United States, PhRMA, has suggested that pharmacy benefits managers (PBMs) have been the primary beneficiaries of the sharp list price increases of many prescription medicines in recent years. The American Diabetes Association’s Insulin Access and Affordability Working Group similarly reproduced selective data released by the three insulin manufacturers on the differences between the list and net prices – the amount the manufacturer receives – of a few insulin medicines, suggesting that the additional profits accrued by the manufacturers was low relative to intermediaries like PBMs.
But in March of this year, researchers at the University of Pittsburgh provided evidence that the net price of insulin medicines in the United States had also soared – by 51% between 2008-2017. This indicates that while other intermediaries had benefited from list price increases, the manufacturers had too. This may seem obvious, but having data to prove it is important.
For my research with Bill Lazonick, funded by the Institute for New Economic Thinking, it has been key to mapping how the profits from higher insulin sales revenues have been distributed. We wanted to find out whether insulin list price increases in the United States had contributed to higher research and development (R&D) investment by the companies, as they so often claim is the case. What we discovered was that as the list price of insulin has increased in the past decade, the ratio of spending on R&D relative to what the companies distributed to shareholders had actually decreased. While over the period of 10 years, the companies spent $131 billion directly on R&D, crucially we found that during the same period, the companies had distributed $122 billion to shareholders in the form of cash dividends and share buybacks.
Cash dividends are the means used by all publicly listed companies to distribute money to shareholders as a reward for holding shares. Share buybacks work quite differently – companies can buy their own shares from the market, which inflates the value of existing shares on the market. Share repurchasing can also benefit company ‘insiders’, like executives, who often receive pay in shares, because they can decide to time when they sell their shares to get the most value. This is not technically illegal, though it was once upon a time. In the last year, some lawmakers in the United States, including Bernie Sanders and Elizabeth Warren, have called for stock buybacks to be banned.
Fundamentally, the system should not have permitted shareholders to profit in this way as diabetes patients were struggling to access their life-saving prescription medicine. As coronavirus continues to spread around the world, the pharmaceutical industry is facing more scrutiny than ever before of its financing and drug development processes. By understanding how value is extracted by shareholders in the pharmaceutical industry, and what relationship this has to patient access, we can, hopefully, create a better system.