Ireally think diabetes care/best practices needs to move away from such a micromanaging and hypervigilant paradigm of what “good control” looks like - and actually I think we should ditch the whole notion of “health” as something to “control” with all the white-knuckling and punishment for transgressions that that implies
I don’t count carbs. I’ve spent 17 years not doing it, except for a year that - not coincidentally - was also the worst of my spirals into disordered eating. like first of all it isn’t necessary - I already do have “good control” by technical standards, even if I oppose the term - and also, insisting I count carbs in order to improve my type 1 diabetes management would actively jeopardize other aspects of my health. I cannot express how much health should not be construed as something you need to minutely quantify, surveil, and police
As a type 1 diabetic of more than twenty years, healthy feet are important. My podiatrist was happy to see the little, almost transparent hairs growing on my toes as evidence that the dreaded diabetic neuropathy has not yet struck me. Occasionally I stroke those hairs and think about them being a good omen – a sign that I won’t lose my toes, my feet, my legs: A thought non-diabetics probably never have. A couple years ago I got bored at work and wrote a poem about the hair on my toes. Enjoy.
I quite like the hair that grows On the tops of my toes. Though unfeminine it’s deemed to be It’s rather pleasing to me. My armpits and legs are kept bare And sometimes, too, down there, As societal beauty standards have ingrained in me A desire to be neck-down hair free.
Cultural norms and oppressive gender stereotypes Do rank highly among my gripes, So I’ll fight for women everywhere To retain their rights and reclaim their body hair. But waxed, plucked, and razored I’ll remain As I like removing unwanted hair from my frame. I’ll leave it to my feet to fight the good fight And to keep me always upright.
And so, like a hobbit, my toes are covered in hair Each one a coarse and kinky little rebel. Defiant and proud they do their share To ring in the patriarchy’s death knell.
Non-diabetics have asked me what hypoglycemia (low blood sugar) feels like, and I’ve always found it indescribable. I could list symptoms, but nothing really conveys the feeling. And I am talking about a level of hypoglycemia *only* someone on artificial insulin could understand. Then I came across this optical illusion and instantly thought “That’s a hypo!”. Hypoglycemia feels like this. Your whole body, your thoughts, your feelings, and perceptions (sight, hearing, everything), feel like this. I know it is an abstract illustration of an abstract description, but this is the best representation of how a low blood sugar feels that I could possibly imagine:
It’s the little things that get you by. Like when the LED on your pump lights up under your shirt and you feel like Iron Man. I AM IRON MAN. DEAL WITH IT.
I grew up watching Mary Tyler Moore. Beginning with old reruns of the Dick Van Dyke show, which was ahead of its time in portraying marriage as a partnership between two people. Capri pants might seem so insignificant now, but they meant a lot back then. Next was the Mary Tyler Moore show, outspoken in its critique of sexism in the workplace, and as relevant today as it was in the ‘70s. Her comedic genius served to provoke, inspire, and empower.
But for me, her role as diabetes advocate was the most important. She spent years fighting type one diabetes, and also fighting the stigma, fighting for awareness, and fighting for a cure.
As a type 1 diabetic I grew up endlessly chastised by society and doctors for not better controlling my disease. I was constantly confronted with the misconceptions of a society that has no idea what type 1 is. I was made to feel guilt for an illness I did nothing to cause, and which could not have been prevented. I was made to feel shame every time I lost my balance on the tightrope that one must walk to control type 1. I learned to believe the lie that had been peddled me: that my inability to always perfectly control my diabetes was a moral failing, rather than a natural response to the burden of being on guard 24/7 fighting a terminal illness.
When I was a teenager I read an interview with MTM, in which she talked about her own struggles with diabetes: how she would binge on whole boxes of powdered doughnuts when trying to maintain strict control just became too much to bear. How she felt the burden of shame and guilt, and how she became determined to fight it. Suddenly this beautiful, glamorous, untouchable celebrity was just as flawed as me. And not only that, but flawed in the exact same way. If someone I saw as a paragon of talent, beauty, and strength struggled the same way I struggled, perhaps I wasn’t so weak after all. Perhaps I could make it too.
Today is the 20th anniversary of my big brother’s death. He was type 1 diabetic, and he passed away unexpectedly at the age of 16 from a hypoglycemic event. I was twelve at the time and had been diagnosed not even a year before. There are days that I feel like giving up on diabetes. Sometimes I just feel I can’t carry the weight of constant testing, counting, bolusing, correcting…I feel I just can’t carry the weight of caring anymore. On my darkest days I’ve struggled to force myself to eat to treat a low blood sugar; I have thought how easy it would be to just, well…not. To just let myself slip away. On those dark days I struggled to believe the fight was worth it. I struggled to believe that I was worth fighting for.
And then I thought of Christopher, who doesn’t have the chance to fight anymore, and that’s where I found my strength. How could I give up when he doesn’t even have the choice to keep fighting?
He will never know it, but he’s saved my life.
I know many who are reading this have felt like giving up. I still feel it sometimes. I hope that all of you can find someone or something you can fight for when you don’t feel up to fighting for yourself. Someone or something that reminds you that you are worth the fight. Someone or something that reminds you that even when you are feeling your weakest, you can still be strong. Because even if it’s hard to believe, you are worth fighting for.
It’s World Diabetes Day, the anniversary of Frederick Banting’s birth. Banting discovered insulin, and without his discovery, I’d have died at the age of twelve. In the wake of the election my diabetes and chronic illness advocacy has been neglected to the point where I am only addressing Diabetes Day now, at ten at night. A weird part of me – the part that has normalized an existence wherein I am always one tiny miscalculation, one computer error, one missed test, or forgotten alarm clock setting away from death – has felt like this wasn’t as important anymore. In the face of Trump’s election, I felt compelled to tackle every social injustice I could find. Suddenly it was as if all I’d done for education, science literacy, women’s rights, and diabetes awareness weren’t enough. Why had I not also been more involved in politics? In racial justice? In environmental protection? I felt ineffectual. Flaccid.
But I’m not a super woman, and I don’t know how to fight every injustice (at least not yet!), and I can’t give up fighting the battles I’ve been fighting so long. And after all, my diabetes advocacy does intersect: for with Trump and his team’s threats to the ACA and the heath care social safety net in general, people like me are at very real risk.
Advocacy requires education, but don’t worry, if you don’t know the story of Banting’s discovery of insulin, it is anything but dull!
You must first imagine a time when diabetes wasn’t a punchline about fat, lazy Americans. Before it was a hashtag accompanying photos of greasy and sugar-filled treats. Before it was something anyonelaughed about. It was 1920, and diabetes was a universally feared death sentence that almost always befell children.
Type 1 diabetes, the type I have, is an autoimmune disease. There is no prevention and there is no cure. It is not caused by diet or “lifestyle”, and it does not discriminate; it can emerge in anyone, from infancy through adulthood, of any level of physical fitness. A full understanding of the disease has not yet been reached, but what is known is that it is at least in part genetic, and is likely triggered by environmental factors such as viral infection. A person develops type 1 when their immune system starts attacking their body’s own insulin-producing beta cells. Without insulin, energy from food consumed cannot enter cells. Before the discovery of insulin, this meant certain death.
In the early 20th century, large hospitals would have entire diabetes death wards, usually filled with children, all slowly succumbing to the disease while their grieving families sat by, waiting for them to die. I can imagine what it would have been like to be a child in such a ward. I can tell you exactly what it feels like to die from diabetes, because I almost did. Twice.
The first time was when I was twelve. It started as malaise. I was a bit more tired than usual. I was somewhat nauseated a lot of the time. I started to become emotionally depressed. As the month preceding my diagnosis progressed, I became weaker. I did not know that my body was cannibalizing my fat and muscles for energy, that my blood was slowly turning acidic, and that my organs were beginning to fail. My weight dropped rapidly. I was winded walking up a flight of stairs. My vision got a bit blurry and my thinking muddled. And I was so, so, so thirsty. Like, unless you’ve spent three days in the Sahara with absolutely no water, you cannot imagine how thirsty.
Had I not been diagnosed I would have starved to death. The inability of my body to convert food into energy causing me to waste away, and eventually to die from heart attack, stroke, or systemic organ failure as a result of Diabetic Ketoacidocis (acidic blood), slipping mercifully into a coma first…maybe lingering for a few days. And so was the fate of every child before a young Canadian doctor, Frederick Banting, discovered insulin.
Now picture this in your head: the year is 1922. In a diabetes death ward in a children’s hospital in Toronto, a couple hundred children lie in metal-framed hospital beds. Their bodies are emaciated, some are in comas, all suffered as I suffered. The air is sweet with the smell of their breath and urine, for a diabetic’s breath is like fruit and their urine like honey. Their Gibson Girl mothers weeping, their besuited fathers trying to uphold the emotionless masculinity of their age, their siblings in petticoats and newsboy caps kneeling at their sides. Then a dashing young doctor, Banting, and his partner, Best, enter the ward, insulin syringes in hand. One by one, they begin injecting the children, and by the time they get to the last child, the first have already begun reviving from their comas.
Suddenly, diabetes is no longer a death sentence. It is a disease that could be managed. Children who were skeletal and comatose become plump and active once more. It is the epitome of the inspirational tale. But this is not a story of hope, because that is not where the story ends.
Managing type 1 is both difficult and expensive. Although insulin is nearly 100 years old, patent-loopholes allow drug companies to keep tight proprietary control over the most effective formulae. A lack of regulation of the pharmaceutical industry in the United States means that US patients often pay more than ten times the price for a bottle of insulin than our fellow diabetics in other countries. The insulin that keeps me alive, Apidra, costs between $280-$480 a vial depending on which US state you buy it in – and bear in mind, depending on the patient one month’s supply can be anywhere from 2 to 10 vials. In Canada, the country of insulin’s discovery, the same vial is about $30. Further, effective type1 management means testing one’s blood sugar 8-20 times daily (each of my test strips costs $2, so that’s up to $40 a day), delivering insulin via syringe or pump (a pump runs between three and seven thousand dollars), using a few other medical odds and ends like sterilization alcohol, medical adhesives, etc., and regular doctor visits. The total annual cost of my diabetes medication and supplies, without which I will die, is about $26,000 before insurance.
That cost is not prohibitive, it is impossible. And because of that, I almost died of diabetes a second time.
Before the ACA, I was uninsurable. My type 1 considered a pre-existing condition. After I was dropped from my dad’s insurance, I had to pay for everything out of pocket because of my uninsurable status. Even re-using single-use only insulin syringes to the point where each injection left a massive bruise on my abdomen, even reusing finger-prick lancets until they were literally too blunt to work anymore, even fasting every other day to take less insulin, I couldn’t afford the cost of my disease. In my mid-twenties I began insulin rationing. I would test my sugar only once a day and take the bare minimum of insulin to keep me alive, keep me working my three jobs.
Then one morning when I was 26, it caught up with me. I’d lost 20 pounds in a month – I woke up vomiting that morning: the Diabetic Ketoacidosis from not getting enough insulin was so extreme that I lost seven more pounds in one day. My roommate drove me to the emergency room where I had five IV lines put in, was put on oxygen, intravenous potassium, and spent three days in Intensive Care.
President-elect Trump is already waffling on his stance on the ACA, but that doesn’t stave off the real fear of me, other diabetics, and others who have pre-existing conditions for our lives. Literally, we fear for our lives because we know that people like us were left to die before the ACA. We are hoarding our medications and supplies and taking every step we can to hedge against loss of insurance.
I said this was not a story of hope, but neither is it a story of despair. For, like I said, there is a part of me that has normalized fighting for my life. I have done it, in a very literal sense, every minute of every day since I was twelve and a half years old. And so too have other type 1s fought. And so too have type2s fought. And so too have allthose with chronic illness and disability fought. We fight because our lives are worth fighting for. Because an enlightened society recognizes our intrinsic value as human beings, despite the flukes in our physiology. We fight because we know that, despite the misconceptions and stereotypes society has about us, we have something to offer humanity: something immense, something those who’ve never had to fight for there lives cannot understand.
Our bodies may be damaged and weak, but we are strong. And we will take our fight to the steps of the White House, to the feet of the men who want to strip us of our means of survival. Who want to strip us of our Right to Life. We will use our damaged, sick, and broken bodies as blockade. We will use our clever and quick thinking minds. For if anyone knows how to fight, it is us.
Type 1 children, before and after insulin treatment:
Dr. Frederick Banting, Nobel Laureate for the discovery of insulin:
Banting and Best, with one of the diabetic dogs they successfully treated:
This post is political only insofar as current politics affect diabetics and their loved-ones. And you know what? Current politics isn’t just affecting us, it’s threatening our lives. One of the first items on president-elect Trump’s agenda will put every diabetic in danger of losing their insurance coverage. We must fight this. We may be sick, but we are notweak. We have spent every hour of every day since our diagnosis literally fighting for our lives. We, the chronically ill, know how to fight better than anyone. Use that strength now.
Does your pancreas need a boost? Our new insulin drop will give you a smile when you need it most.
Cute stylized insulin enamel pin features the amino acid chains that make up this peptide hormone, made in your pancreas.
Insulin is a hormone that helps turn food into energy. After you eat, sugar from food goes into the bloodstream. Insulin unlocks body cells so they can accept a special delivery of sugar (aka glucose). The cell transforms glucose into energy for you to run and play.
This is one of three NEW hormone pins (estrogenandtestosterone also in the mix) at iheartguts.com. check ‘em out or give our hormones a new home!
Democrats are *claiming* their build back better act will lower the price of insulin to $35/month for everyone. In fact it will only lower it for people who currently have health insurance (those already in the least In need of help from programs like this) and will leave many many people out. Here’s a flow chart from some incredible insulin advocates on Twitter showing exactly who will be helped by this program
Helping some people is better than helping no one, except democrats are being intentionally misleading about what is happening so they can convince the the general public they have solved the insulin crisis while leaving the most vulnerable population out of this act entirely
Insulin for all means insulin FOR ALL and this shit should be free anyways
Trailer and poster not exactly what I was expecting but still looks great!
I’m getting a reverse weird brave vibe which is actually a good thing!
I didn’t realize it took place in the 2000s at first, so I was confused as to why they used fucking Larger Than Life, a song that is literally twenty-one years old…
Then I saw this poster.
Then it hit me.
The signs were there all along.
IT’S A FUCKING TEK-DEK
AND it has a diabetic background character!
This is the person doing the tek-dek-ing in the photo above! The age of that pump also dates the film
Personally I think it looks like a pump site on her arm rather than a cgm but whatever it’s diabetes rep no matter what!
Changed my pump site, went for multiple walks, gave almost double blouses half an hour before eating and ate almost no carbs for almost 48 hours and FINALLY a thirty minute walk, increased basal rate, and hot shower forced my body to finally use all this insulin
Okay this is maybe a long shot because it requires a very specific kind of person to know the answer, but if any of you have worn a tank length binder with a dexcom on your stomach has it caused compression lows (incorrect incessant low alarms because of compression on the site)?
AND a race one since the most affected regions will be Africa, Asia and Oceania
as a friend pointed out, this headline makes it sound like supply will be dwindling. supply is fine. people will be *priced out*.
this is fucking MURDER.
insulin has been mass produced (from animal extracts) since -1923-. slow acting insulin has existed since the ‘50s, and ‘human’ genetically engineered insulin (derived from E. coli bacteria) has existed since 1982.
insulin treatment for diabetes is not some new or ‘unproven’ treatment. according to beyondtype1, “Humalog rapid-acting insulin came on to the market with a list price of $21 a vial in 1997.” adjusting for inflation, a vial these days should cost about $34 at most. instead, it costs over $300. there is NO reason for it to be steadily gaining in price to the point that diabetics are unable to afford their lifesaving medication, other than the sheer inhuman greed of pharmaceutical manufacturers.
let me reiterate: life without insulin (for Type 1 diabetics in particular) is a slow and painful death sentence. the ability to treat diabetes is a relatively modern phenomenon that has allowed countless people to live full, healthy lives. we should be expanding full covereage and access to insulin to diabetics the world over, and it should be FREE.
¼ diabetics ration insulin and supplies, and this is often deadly. A few states (Maine and Minnisota) have passed Alecs Law, named after Alec Smith who died of insulin rationing shortly after his 26th birthday. This law means people can pick up a months supply of insulin for $35 if they do not have insurance, but they’re also currently getting sued by insulin manufacturers, pharma AND BEYOND TYPE ONE for those life saving laws because they don’t want to lose money. (Insulin costs around $5 to produce, so they are or really losing money here).
So what can you do about it?
Mutual Aid Diabetes is a great place to donate! At the moment they’re still working on setting up their internal fund but they have a list of go fund me links on their website you can donate to https://mutualaiddiabetes.com/
If you want to donate to an organization doing the legal and political work, T1 International is doing a lot of great work on that front https://www.t1international.com/
When I first went on the tslim I was so careful about changing my site on time but ever since learning I could refill my cartridges without actually stabbing myself again I haven’t changed a single site before the 5 day mark
