The government stole my pancreas

A lot of chronically ill people find that their health suddenly declines when they are in their early to mid twenties. Idk why, it just seems like your twenties is when it tends to happen. So if you are approaching your twenties, & you are starting to realize that you’re tired all the time, or that your joints are a little too bendy, or that for some reason you have a constant stomachache—please go to a doctor now. Don’t wait because “it’s not that bad” or you can “deal with it”. Because there’s a possibility that it will become bad in the next couple of years. I know that it can be difficult or impossible to get medical help when you’re a minor. But if at all possible, please see a doctor. Get a mobility aid, get a diagnosis, accommodations, therapy, medication, anything that could help. Please don’t put it off—if something would improve your quality of life now, do it now. You may end up saving yourself a lot of grief later on. It’s so much better to head into your twenties already prepared, just in case.

People with cochlear implants are cyborgs

People with pacemakers are cyborgs

People with insulin pumps are cyborgs

There are even edge cases revolving around how much electricity and integration into the body are necessary to make someone a cyborg.

People with replacement hips or other bones are by some definitions cyborgs

People with implanted medical devices such as artificial valves or stents are by some definitions cyborgs

People with prosthetic limbs are by some definitions cyborgs

People with ostomy bags are by some definitions cyborgs

People in wheel chairs, electric or not, are by some definitions cyborgs

Earlier this year, a woman was forcibly deprived of a brain implant that was treating her epilepsy because the company that made the implant went bankrupt. Here's a link to one of several articles about it:

“they are the disabled deserving of the rights to the technology their lives literally depend on.”

Yeah. The people in question are disabled.

So why the effort to reinvent the wheel with this brand new category of “cyborg rights” instead of enumerating these specific needs within the already existing framework of disability rights, for which there is already a broad coalition of support and action groups, and in the US, more than 3 decades of federal law?

This isn’t a new thing or something separate from the most basic definitions of disability in any way, and as medical and assistive technology evolve, more and more disabled people will be using that technology. Our rights to it cannot be reasonably shunted off into some separate fight or unrelated body of work or acknowledgment of our civil rights. It’s all one thing. Disability rights have always been expansive and multifocal.

Came across this in another sub; many people use CGM's who do not have diabetes and it's an interesting discussion about how people use this info without having the background knowledge of one's own endocrine system. I see an increase in people coming into diabetes subs to discuss "spikes" or "spiking their insulin" and thought this video is quite relevant to that discussion. How people are turning to disordered eating, or not understanding the absolutely normal functions (up and down) of their own pancreas. Also, I'm looking at the sheer amount of "influencer" discussing "spikes" and then spreading misinformation. This part of the video discusses misinformation of CGM within non-diabetic populations. thought it was quite interesting!

The relevant sections should start around 4.40 mins: https://www.youtube.com/watch?v=4BUAIyGVlac&t=280s

EDIT: I think this is allowed in the sub-meant to be a discussion about CGM's and people without diabetes and how it can cause anxiety in people. If not allowed let me know. I am T1 and have heard these types of comments in real life, and them trying to compare their (non T1) data to mine etc.

Edit 2: the rest of the video is not relevant to this discussion. The CGM discussion is 4.40 to about 11 minutes.

I don't have the spoons to say much about this myself right now, but would also recommend the video link. I'm all for people doing whatever the hell they want with their own bodies--and everyone having access to the necessary technology!

I feel myself getting more frustrated and angry. And I know it’s that my blood sugar is just going high and it’s as simple as giving some insulin for my mood to come back down. But I feel myself wanting to sit in my emotions for a little, even when I know it will make me feel like shit.

I feel myself getting sad. Sad that my body can’t just do what it should and balance itself out. Sad that I’m reminded again that this will be a forever thing.

And when I come back down I feel thankful that I am able to save myself from feeling angry, frustrated and sad of something that is part of me. Something I’ve lived for the longest time now. And I know it’s okay to sit in my emotions and to feel everything I feel because this life is hard and it will continue to be. But in the end it worth all the struggles and big emotions.

Margo Hood

Common Application Essay

Fall 2018

“My Dead Pancreas”

March 16, 2015, started off as a normal Monday. I attended school, then my mom picked me up for my yearly well check. ​I didn't think much of it. I was healthy, hardly ever got sick, and felt fine. It was the normal routine: the nurses checked my height, weight, and collected a urine sample from me. My doctor had just started checking my vital signs when a nurse came in stating that she found sugar in my urine. The nurse then checked my blood glucose and the readings were alarmingly high. My doctor exited the room and called Cincinnati Children’s Hospital. He came back and said that the Emergency Room was expecting us. After hours of medical tests and waiting in the Emergency Room, the doctor determined that I had developed Type One Diabetes (T1D).

Receiving the news that your pancreas has died is just as devastating as losing a best friend you never knew you had; you never know how much it means to you until it’s gone. Living with a dead pancreas is not fun. It requires lots of finger pricks, injections, math, weird suntan lines caused by medical devices, and educating those around you of the disease. There is no cure for T1D. I’m stuck with this dead pancreas forever.

When I was first diagnosed, I felt powerless. I didn’t choose or ask to have a dead pancreas, God handed it to me on a silver platter and said, “Enjoy your new life.” It felt like I had returned from the dead. My classmates looked at me as if I were a completely different person. They didn’t understand how one small mistake in an insulin dosage could lead to my death. They just thought I was that crazy girl who talked too much about her disability.

Regardless of what others thought of me, I was determined to retake control of my life. I had to relearn how to love and accept myself. I embraced the tiny spots on my fingertips from finger pricks. I learned to love the scars that my continual glucose monitor sensors and insulin pump sites left behind. I forced myself to use my voice to advocate for a cure and raise awareness about Type One Diabetes.

I didn’t truly learn how to love my diabetes until I became a Juvenile Diabetes Research Foundation (JDRF) Youth Ambassador. Meeting people who were not only around my age but also were fighting the same battle as I was motivated me. I wanted to get involved in the diabetes community more. It made me realize that diabetes is both the ugliest and most beautiful gift that I’ve ever received. Without it, I would not have met some of the amazing and brave people I call my friends. I would not have been able to participate in or know of amazing fundraisers such as JDRF’s annual Cincinnatian Of The Year Gala or American Diabetes Association’s Tour De Cure. I would not have found my voice if it weren't for T1D.

I want to be a nurse (BSN) and Certified Diabetes Educator (CDE) so I can teach newly diagnosed diabetics about their disorder and teach them that diabetes isn’t a burden. I want to teach them that diabetes does not define them; they are stronger than their disorder. But most importantly, I want to educate people around me about diabetes. I want to end the stigma that surrounds this often misunderstood disease.

For perspective, I’ve been diabetic for about 25% of this discovery’s history. When my grandparents were born, this treatment did not exist. If you ask me, “what time period would be fun to go back to?” I can’t even speculate more than one hundred years back, because I know I couldn’t live in that world.

Today, I’m going to pick up four boxes of insulin from my local drug store. My endocrinologist is renewing my prescription, so I’m set for several months to come. I lead a more difficult life than someone without Type 1 diabetes, but I do live, and so do my relatives and friends with the condition. Thank you, Banting, Best, Macleod, and Collip (and all those dogs), for letting me do that.

One hundred years later, after insulin’s discoverer gave his patent away for $1 so as never to profit from the discovery, pharmaceutical companies are forcing people to ration insulin or go without entirely due to unchecked price increases. This is particularly true in the US, and is a major reason why I did not stay there after graduate school. There, and in much of the world where insulin is expensive and scarce, people are dying. Things are starting to change, but not soon enough. It’s been one hundred years, and we need to do better when the alternative is death. 

Insulin is worth being grateful about, and its exploitation is worth being angry about. One thing to be aware of is that it is a treatment only, not a cure. Diabetes is still high-maintenance, and I still have a very complicated relationship to it.

Today, though, I’m choosing to focus on my gratitude, and being alive, and being able to go for a walk with my friend in the rain-scented air, do some trivia, see a show.