“My Black Diabetic Life Matters” – A Post by Sydnee Griffin

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. 

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“Follow and highlight local Black and non-Black POC on social media. Listen to their stories, speak out and support them.”

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.

Have You Signed the Type 1 Diabetes Access Charter?

On Wednesday afternoon, I signed a charter intended to bolster worldwide diabetes advocacy. The charter was launched by T1International and I’m sharing it here with you to encourage you to sign it, too. Here’s some more information on it, pulled directly from the T1International website:

Around the globe today, people with type 1 diabetes are dying because they cannot afford or get ahold of insulin, supplies, education and treatment.

To survive and live a full life, everyone with type 1 diabetes has the right to the following:

1. The right to insulin
Everyone should have enough affordable insulin and syringes.

2. The right to manage your blood sugar
Everyone should be able to test their blood sugar levels regularly.

3. The right to diabetes education
Everyone should be able to understand their condition, including adjusting insulin dosages and diet.

4. The right to healthcare
Everyone should have hospital care in the case of emergencies and ongoing specialist care from a professional who understands type 1 diabetes.

5. The right to live a life free from discrimination
No one should be subject to any form of discrimination or prejudice because they have type 1 diabetes.

In addition to magnifying diabetes advocacy efforts globally, the charter is also used to influence the actions of governments and organizations so that policies can be changed and the rights of people with type 1 diabetes can be prioritized.

It took me fewer than 30 seconds to sign the charter, and I put this blog post together in under 10 minutes. Join me by signing and spreading the word about it to help people living with type 1 diabetes have access to vital insulin, supplies, healthcare, education, and freedom that are necessary in order to survive and live full lives.

8 Things About Diabetes That Make Me Want to Rip My Hair Out

Life with diabetes can be the opposite of a cakewalk. In fact, it can be so frustrating at times that I seriously consider ripping my hair out due to sheer agitation.

When thinking about the things that drive me nuts about diabetes, I came up with a list of 8 occasions in which I come this CLOSE to losing my freakin’ marbles:

1. When low blood sugars refuse to come up…

2. …And when high blood sugars refuse to come back down.

I’m considering these first two as separate list items because the scariness of a lingering low and the frustrating nature of a stubborn high can be two very different types of “GAAAAAAAAHHHH!” But both can be especially suck-y when you feel and know that you’ve been doing everything right to treat them without experiencing the expected results.

3. Pod and CGM sensor failures.

Oooh, any sort of device failure can be so exasperating any time of day. But they’re worse when they happen at inconvenient times, such as in the middle of the night or during an important conference call. All diabetes technology should work flawlessly at all times, but that’s not always the reality that we live in.

4. Inaccurate results.

I can’t stand when my blood sugar meter or my CGM report false readings. Sometimes, I’ll check my blood sugar two times in a row just to see how close both readings are to one another, and it makes me want to throw my meter across the room when I see that they’re off by 20+ points. Once, I had a reading that was off by more than 50 points! That makes a major difference in how much insulin I give myself in that moment in time, so inaccurate results can really derail my blood sugars for hours after.

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I’m sure you can imagine how entertaining the search results were when I looked up images to go with this blog post.

5. Folds in the adhesive.

Whenever I apply a fresh sensor or a pod, I try to be super careful and make sure that the adhesive sticks smoothly…but despite my best efforts, that doesn’t always happen. Folds in the adhesive are far from the worst thing in the world, but they do make it more difficult for my devices to stick on for the full length of time that I need to wear them, and I usually end up having to add tape around them to reinforce the hold. More tape = more folds = more irritation!!!

6. Unexplained blood sugars.

Anyone with diabetes has been there, done that. You could follow the exact same routine from one day to the next, even eating the same foods at the same times, and get totally different blood sugar results. Or maybe you thought that you bolused perfectly for a meal, only to find out hours later that you’re much higher or lower than you anticipated. Whatever the reason behind them may be, unexplained blood sugars are just obnoxious.

7. Screeching alarms.

Speaking of things that are obnoxious, let’s talk about wailing OmniPod or Dexcom alarms for a hot second. There’s nothing like a resounding BEEEEEEEEEEEEEEEEEEEP to ruin your day!

8. The INSANE costs of our supplies.

Undoubtedly, the thing that most makes me want to rip my hair out when it comes to diabetes is the cost of supplies. I’ve blogged more and more recently about the criminal cost of insulin – since the 1990s, the cost of insulin has increased over 1,200% (!!!) – and I’ll continue to do so until EVERYONE with diabetes can afford this life-saving medication. We never asked for diabetes to happen to us. But it did. And the fact that many people with diabetes have to make sacrifices in order to, well, survive, is simply not okay, and the most infuriating thing about living with this chronic illness.

Do You Know How Shareholders Benefit from Insulin Price Increases?

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.

 

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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.

10 Countries, 10 Global COVID-19 Perspectives

This blog post was originally published on the T1International website on April 10, 2020. I am highlighting it here on Hugging the Cactus because 1) I think it sheds a lot of light on the healthcare systems in other countries and 2) it’s a reminder that we’re all in this together.


Hear from ten people living with type 1 diabetes as they share their perspectives about the impact of the coronavirus on their country and their health.

Bolivia – Laura
Things are complicated here, and our health system is already problematic. There are no masks and a lack of other correct equipment to treat patients. The government has been very careful about prevention, and quarantine has been going on for several weeks already. Many people are poor and live day by day with what they earn. The government began to give money and food aid to older people and families who receive other types of government bonds, but not everyone can receive it and many say that they do not have enough money to eat. Based on the numbers on our identification, we know when we can go out to get groceries or medications – only on specific days. Still, there is a lot of ignorance and people are not following instructions. There are 200 cases confirmed, with 15 deaths and it is increasing every day. People who have to travel long distances to get medicine do not have good options. I have a friend who has no blood glucose test strips and her blood sugar keeps going too high, but because she does not have test strips, she doesn’t know it. It is very dangerous.

Costa Rica – Dani
Our small country is on lockdown, with only 10 people in ICU at the moment. The country is making at-risk patients a priority and currently even shipping their medicines to them to prevent them from going to the hospital and getting infected. Families have been given extra insulin for the next two months, and the community is supporting each other if there is an urgent need for support or extra supplies.

Germany – Katarina
Germany has one of the lowest COVID-19 related death rates so far. A lot has been undertaken to prevent the virus from spreading – test centres have opened their doors to the general public, hospitals are increasing their capacities for intensive care and ventilation, and research teams are working hard to improve diagnostics, therapy and find preventative methods. The pandemic is challenging our healthcare system, our economy, and our society, but it also opening new pathways. A lot of diabetes care centres are transitioning to telemedicine, and people with diabetes can get prescriptions and supplies by mail. Being a doctor on the frontline and a high-risk patient at the same time is not easy – I am constantly torn between my profession and my wish to self-isolate and stay safe.

Ghana – Yaa
With the rise in COVID 19 cases in Ghana, the government made it mandatory to close down schools for a month, to limit the number of people to no more than 25 in a social gathering, and to start a two week partial lockdown in contiguous districts (3 regions). This means no one is allowed to go out unless it is to buy food and drugs. Borders are closed, and importation of goods are restricted. For people with type 1 diabetes who get supplies at the government hospital using the national health insurance scheme, they still have to go all the way to the hospital for their supplies. The hospital is a major reservoir of the virus, so it increases the chances of people with type 1 who are already at high risk. The only other option is to go buy from the pharmacies, where there is currently a surge in prices. People with diabetes were asked and encouraged to stock up on their diabetes supplies, but not everyone was able to do this. We fear for the unknown and the long term impacts.

India – Apoorva
As a medical doctor I have been working and seeing new cases, but now my entire department is in isolation. I took steps back to prevent getting sick. Delhi is one of the hotspots, and we had sudden surge in cases. Rural impoverished areas are problematic due to people living in close quarters. Our government initiated a lockdown, but many tried to leave quickly, especially migrant workers who come and go from the city centres because they lost their livelihoods. This caused the virus to spread despite drastic measures taken by the government. Currently, there are no insulin shortages as all medical services and pharmacies are operational, but we have seen a possibility of analogue shortages and hope to try to ensure that does not happen. Our main aim is to support the actions of the government and I plead everyone to stay home and protect their families.

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Kuwait – Mohammad
We have been on lockdown for four weeks, and people who came to Kuwait from other countries were tested. If someone had symptoms, they were put in quarantine. Cases have been contained and so far, there has only been one death. It is interesting that there is now a COVID-19 database that was created rapidly, but there has never been a database of people with type 1 diabetes in Kuwait. Our medications tend to be provided and some are being delivered. Overall, things are OK now, but we are concerned about access to medication and food supply in the long term because most of it is imported.

Lebanon – Cyrine
Our country has been facing tricky political problems for the past five months, since we had a revolution in November. The banks have no money, and there is no money from the government. We can only have access to a specific amount of our money per month. We are facing shortages of medical supplies including ventilators and medical protective equipment. The whole country is in an emergency state now and there are military personnel on the streets. As cases continue to rise, people are only allowed to go out at certain times and we can only walk. I have been on self-quarantine for the past few weeks. What worries me most is the people who already struggled to afford their basic insulin and supplies. With 80% or more of the population having lost their jobs, what are those who cannot afford their insulin doing now? I am trying to help those I know about, but there is no government plan for people with type 1 diabetes. People do not have money anymore, so how can they cover their insulin costs?

South Africa – Estelle
Testing here is slow. On April 2nd, I heard only 46,000 tests had been done, which is not even 1% of the population. It looks like we have small numbers of diagnosed patients but there is so much unknown. Apparently there is enough stock of medication for up to a year. Medical aid, our version of insurance, said they will cover all treatment related to COVID-19, so that is a relief. A large proportion of individuals might not be taking it seriously enough. The biggest concern is keeping the virus out of the rural areas, which are densely populated. If it spreads there, it could be catastrophic because we do not have enough hospitals.

Tanzania – Johnpeter
We only have about twenty cases identified so far. I am currently in Serengeti which means I am far from cities where cases were confirmed and spreading. I am staying put and I had to cancel my doctor appointments and other appointments. I have had to reduce my insulin dose because I cannot get any insulin here in this rural area. I have some insulin in Dar es Salaam that my doctor gave to my brother for me. So right now I am working with my brother to try to find a way to get the insulin. I am not supposed to travel to cities to risk my health, but I am risking my health by staying here without insulin. It is incredibly stressful on top of the challenges I already face accessing and affording my insulin.

USA – Karyn
In Georgia, where I live, we are also on lockdown, with cases increasing every day. The biggest issue is shortages of ventilators and protective equipment for hospital staff. Cost and affordability issues are already a problem in the USA and this will likely be an even bigger challenge now. Due to the broken healthcare system here, it’s uncertain if people will even get tested if they go to the doctor. Some people are getting billed for the test even though it has been said they shouldn’t be. Last year around this time, I went to Canada to buy a year’s supply of insulin. I have a bit more, but I’m not sure what I’m going to do without being able to travel abroad this year. I already struggle a lot with the costs. Many people are losing their jobs, and therefore losing their insurance, which will inevitably also impact their ability to afford essential medicines.

Why I Decided to Become a Digital Advocate for T1International

When I started Hugging the Cactus, I knew I wanted to do more with it than just use it as a platform to share my diabetes story.

I also wanted to make change.

I wanted to do more for my diabetes community.

I wanted to become the best advocate that I could possibly be.

But for a long time, I was stuck on how exactly to go about doing that.

During this time in quarantine, I’ve been able to spend more time thinking and researching ways that I could get more involved.

And that’s what lead me to T1International.

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#insulin4all means FOR ALL.

As I mentioned in a blog post earlier this month, I’ve sort of known about T1International for a long time now. I knew that they were the organization behind the well-known hashtag #insulin4all, but I was curious to learn more about them and their mission.

As I discovered, T1International works to support local communities by giving them the tools they need to stand up for their rights so that access to insulin and diabetes supplies becomes a reality for all. They have a plethora of materials and information on their website that helps those who are interested become well-versed in this issues surrounding insulin and diabetes supply accessibility. In addition, the T1International team keeps site visitors up-to-date with their blog that contains articles on everything from global stories to legislation explanations.

It wasn’t long before I realized I wanted to work with T1International. So I reached out to their team and applied to become a digital advocate, and less than one week later, I completed my orientation. It’s official: I’m a proud T1International digital advocate.

This is meaningful to me because now I feel more empowered to advocate about the issues that matter, such as the #insulin4all movement. This movement is so important because access to insulin, no matter who you are, where you’re from, or what type of diabetes you have, is critical to the health of all individuals who rely on insulin to live.

Before I dive more into the insulin crisis, let me first acknowledge that I am extraordinarily lucky and privileged: Insulin affordability has never been a personal issue for me. Sure, I’ve had to pay way more out of pocket than I’d like to in order to cover the cost of insulin, but I’ve never had to make the impossible choice between paying for a month’s supply of insulin OR paying for monthly rent.

Many people have had to make that sort of choice, though. And that’s simply not okay.

Whether you’re familiar or unfamiliar with the current insulin crisis, consider the following facts (provided by T1International):

  • Since the 1990s, the cost of insulin has increased over 1,200%, yet the cost of production for a vial of analog insulin is between $3.69 and $6.16.
  • Spending by patients with type 1 diabetes on insulin nearly doubled from 2012 to 2016, increasing from $2900 to $5700.
  • A study of rising drug prices over the decade ending in 2018 found that list prices of insulins increased by 262%, with net prices increasing by 51%.
  • One of every four patients with type 1 diabetes has had to ration their insulin due to cost. Many have died.

These statistics are more than alarming. They’re downright disgraceful, unjust, and have forced patients to resort to drastic measures to stay alive.

Change needs to happen.

This is why I’m humbled, fired up, outraged, and beyond ready to join the T1International digital advocates team and become one more voice who helps to make the issues regarding insulin access and affordability heard.

3 Things I Want the World to Know About Insulin

See that tiny glass vial in the below image? Can you believe that the contents of it are extremely precious?

Can you believe that, at approximately $9,400 per gallon, insulin is ranked as the sixth most expensive liquid in the world?

It’s kind of crazy, right? But besides knowing that insulin is priced outrageously, there’s actually a few other things that I think the world should know about insulin.

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  1. Not all insulin is created equal. Just like diabetes, insulin exists in various forms. Besides liquid insulin, there’s also inhaled insulin (Afrezza). And some people with diabetes may even take oral medications that are designed to help increase the effectiveness of insulin that they either receive via injection or produce on their own. There’s brand-name insulin produced by several drug manufacturers (the big three being Eli Lilly, Novo Nordisk, and Sanofi) as well as generic versions of the drug…but that doesn’t mean that generic insulin works just the same as brand-name insulin for all people with diabetes. Insulin is complicated and different types work better for different people.
  2. Insulin is incredibly sensitive. Take one look at the vial in the above photo and tell me that the insulin inside it is safe at all times. Nope, it sure isn’t! Besides the packaging being super fragile, people who rely on insulin must also be careful to keep it at the proper temperature at all times. All it takes is dropping the vial once or leaving it in an unstable environment for the insulin to be rendered useless, potentially wasting a few hundred dollars. It’s as volatile as it sounds.’
  3. Taking too much or too little insulin is dangerous and life-threatening. For some people, there can literally be a life-or-death difference between one unit of insulin. Too much can cause blood sugar to plummet and a person can experience severe hypoglycemia that may result in shock. Too little insulin has the opposite effect: A person will experience hyperglycemia that can have ranging consequences, some that are minimal/temporary, others that are very serious. That’s why precision is so important when dosing for insulin; on top of that, nobody wants to waste a single drop of the stuff because it is so expensive. But this is what many people with diabetes need in order to survive.

So when you see the hashtag #Insulin4All or hear someone talking about how overpriced it is, you’ll know some of the basic characteristics about insulin that make it invaluable to people with diabetes. Perhaps you’ll be inspired to join the fight to make insulin affordable and available to all – as it should’ve been to begin with.

It’s Not Just About the Money: The Cost of Living with Diabetes

It’s November 25th which means it’s day 25 of the Happy Diabetic Challenge! Today’s prompt is about the cost of diabetes. Naturally, I started thinking about just how much diabetes costs me, not just in terms of money but also emotionally and physically…

We all know that diabetes is an expensive chronic illness.

Diabetes is associated with doctors appointments, pricey medical equipment, and maybe even the occasional trip to the hospital…all of those things aren’t cheap. My insulin alone would cost me $4,962.32 per year if I was uninsured (and if I do the math, this means that I would’ve spent over $100,000 in the past 22 years on JUST INSULIN). Those are not small sums of cash!

Diabetes hits those of us who are affected by it hard financially, but there are also significant emotional and physical costs associated with it.

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Diabetes is so greedy, and not just in terms of how much money it costs to care for it.

Emotional – Diabetes takes a toll on my mindset (un)fairly often…and it can happen so rapidly that I barely have time to process the emotions. For example, I can go from being happy-go-lucky to angry because my Dexcom alarm went off and it’s telling me that my blood sugar is high. The anger will hit me hard and I’ll spend too much time stewing over my blood sugar and the best way to correct it.

Plus, I’d be remiss not to mention diabetes burnout. It’s the feeling of total defeat, of no longer having the desire to take proper care of diabetes. It happens to the best of us, and it’s not fun to experience. But it makes sense to feel this way from time to time, because diabetes is so demanding and relentless. People with diabetes never get a break from it, so it’s no wonder that it takes a toll on emotional well-being.

Physical – Diabetes is a physically present in many ways on my body. The OmniPod insulin pump that I wear, as well as my Dexcom CGM sensor, leave the most obvious lumps and bumps underneath my clothing that often prompt unwelcome stares from strangers. And although these devices have improved my quality of life with diabetes, they’ve also undeniably altered my body image. I never had much self-confidence when it comes to that, anyways, and my devices certainly don’t improve how I feel about my own body. I know plenty of people with diabetes who can relate to that sentiment.

There are also the scars that diabetes leaves behind. My fingers are dotted by dozens of permanent black scars left from lancets pricking them multiple times per day for the last 21+ years. I sport purple circles under my eyes pretty frequently from a lack of sleep that is, more often than not, my diabetes’ fault. And sometimes, I have unsightly red marks when I remove old pods that practically look like zits and can take days to go away because the pods’ cannulas pierced sensitive spots. These are all unattractive, physical reminders of diabetes that I can’t do a damn thing about, and it’s frustrating to have even less control over how my body appears because of this stupid chronic illness.

Diabetes is a friggen’ greedy disease.

It depletes my wallet and emotional state, and it manifests itself on my body in ugly, visible markings.

It tries so hard to rob me of everything I’ve got.

But luckily, my determination to fight back harder against it is stronger than my diabetes will ever be.

The $2,000 Mistake

Have you ever received an email that made you stop breathing for a moment? Did it feel like time stood still as you blinked rapidly and tried to comprehend the meaning behind it?

It sounds like a dramatic overreaction, but imagine getting a notification from your pharmacy notifying you that your prescription would cost almost $2,000. That’s a big old chunk of change. The mere thought of paying that much for a supply of insulin makes my heart race and my palms sweat.

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I nearly keeled over when I saw this dollar amount.

I’m happy to report that this was a giant mistake; for whatever reason, my doctor’s office sent my prescription for Humalog to my local pharmacy, even though I explicitly told them that I use Express Scripts for my insulin orders. It was a total mix-up, and the approximately $2,000 was an amount that I would pay if I didn’t have any insurance coverage. I do, and though I’m not sure how much I’ll be paying for my insulin yet, I know that it can’t possibly cost this much.

I’m relieved that I was able to call the pharmacy and straighten this out without spending a cent of my money. But it was also a major wake-up call to a reality that many people are forced to face when it comes to refilling insulin prescriptions. It’s not fair. (That last sentence is the understatement of the century.) I can’t make any sense of it and I don’t know how many people have no choice but to fork over such a large sum of money on a monthly basis in order to live. Thoughts of those individuals and their dire situations scare me far more than navigating the world of health insurance ever could.

While I didn’t appreciate the mini heart attack this email triggered, I guess I am glad that it alerted me to the fact that I’m going to have to be aware of things like this going forward. As I figure out my health insurance costs and coverage, I anticipate more confusion, surprises, and expenses…but hopefully I can also expect/experience a pleasant discovery or two along the way.

Spare a Rose this Valentine’s Day

So Valentine’s Day is tomorrow. Perhaps you loathe the holiday of love and celebrate it solo, or choose to use the day to express your gratitude for your close friends, in the style of Parks and Recreation’s invented holiday, Galentine’s Day.

If you’re in a relationship, you might have an extravagant, candle-lit, five-course dinner planned with your loved one. Or maybe you’ll keep it a bit more simple and say “I love you” to your sweetheart, with a thoughtful card, box of chocolates, and a dozen roses in hand.

Whether or not your scenario includes a dozen roses, though, consider this:

What if you received 11 roses in your bouquet, instead of 12? What if you knew that a rose was spared because the value of that flower helped support a child living with diabetes in a less-resourced country?

I bet you wouldn’t mind getting one less rose in that case.

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This Valentine’s Day, please consider sparing a rose as part of your celebrations. Life for a Child is a nonprofit charity that created the Spare a Rose campaign. They’re able to support nearly 20,000 young people living with diabetes by using donations to buy them insulin, syringes, clinical care, diabetes education, and more. Anyone who’s familiar with diabetes realizes that access to care, education, and resources is critical to living a healthy and normal life. No one would want to deny another, especially a child, from having to forgo these resources because of the financial burden associated with them.

Spare a rose and save child this Valentine’s Day.