You can't really say it gets better, because it doesn't

I feel like you can't really say it gets better, because it doesn't. I always thought I'd never reach that mental block where you're just like, 'I'm sick of this and I don't want to check my blood sugar and I don't want to inject myself'. I was the most diligent diabetic for the first three years. Recently I hit that block. I literally just had a mental breakdown because my stomach was hurting and I was hungry and I just wanted to eat. I had to check my blood sugar and take insulin because my sugar was high. Then I had to wait for the insulin to work.

I just wanted to f*cking eat.

I started tearing up right there at school. I didn't want to do it anymore.

But I have to.


It's not even something that's visible.

It's not even something that's visible.

"It's not even something that's visible. Cancer's not technically visible but you can lose your hair, lose a lot of weight. But you look at me you wouldn't think, Oh that guy's sick. He's climbing mountains, swimming in the ocean. He doesn't have a handicap, you know? It's sad. Diabetes has just been turned into a joke. It's not about the people who are actually suffering with it. It's a joke."


I don't know if I should say this but Cancer patients...

I don't know if I should say this but Cancer patients

"I don't know if I should say this but Cancer patients, essentially you go on chemo or whatever and there's gonna be one of two outcomes. You go into remission or you die. There's a possibility that you can get cancer again if you go into remission but it goes away for a while. Diabetes doesn't go away for a while. No matter what you're always going to need insulin. Right now I'm working 36 hours a week managing a climbing gym. They do not provide insurance."


I should have access to the insulin I need to survive.

I should have access to insulin I need to survive so I don't have to get to that point--so I don't potentially end up in the hospital.

"I should have access to the insulin I need to survive so I don't have to get to that point--so I don't potentially end up in the hospital. So my family doesn't walk into my room the next day to find a dead body. It legitimately scares me. It doesn't just scare me it scares my significant other. And my parents too."


I'm not able to buy insulin out of pocket. Not even in Mexico.

insulin out of pocket

"It's pretty dramatic. My brother has casually gone through school. He's five years older than I am so he's taking his sweet time. He's 28 and he's already been off my parents insurance for three years. I still have a few more years on there but I'm like, 'what am I going to do when I don't have that insurance any more?' I'm not able to buy insulin out of pocket. Not even in Mexico, which is just an hour south of here. "


I wanted to get into music theory

"If I don't make it then I don't have insurance. If I don't have insurance I don't have insulin."I wanted to get into music theory...getting good enough to the point where I could be a studio musician. I thought about that because it pays pretty well but it's competitive and if I don't make it then I don't have insurance. If I don't have insurance I don't have insulin. If I don't have insulin, then...I'm dead, so yeah."


I've had this box since I was diagnosed in 2012. March.

"I've had this box since I was diagnosed in 2012. March. Lots of syringes and pen caps, we just dumped them all in there. I think we did the math once. This represents thousands and thousands of dollars."


If diabetes was cured tomorrow

 

"If diabetes was cured tomorrow and a company patented the cure, like, it wouldn't make a difference because it still wouldn't be accessible. It's not just a business, it's literally peoples lives that you're putting price points on. You're effectively saying 'this person owes us this much money to be able to live' and not even a normal life--just to live."

If you want to share your story and perspective on insulin access, contact me. To support this project and get awesome perks, become a LivingVertical Patron.


I can climb my own mountains. Making insulin is the one thing I CAN'T do.

"I can ride my own bicycle. I don't need sponsored teams to do that for me. I can drive my own car-really fast if the urge takes me. I can survive in a world without sponsored race car drivers and cyclists telling me that I can do anything I put my mind to. You see, that's only partially true, right? Hell, I know what I can do. I can do all the cycling and driving and running. The one thing I CAN'T do is make my own insulin. I'll climb my own mountains, thank you very much, but I can't do that without insulin. I've inspired my pancreas really thoroughly and nope, still no insulin. 

The pharmaceutical industry, these are the guys who can make the insulin I need to survive but they're busy paying people to do inspiring things that I could do for myself-if I weren't busy worrying about how I'm going to afford insulin. You see the irony?"

Ok, I know this isn't about my story. This is a documentary project I'm shooting about a much bigger story of which I am a very small part. But I am part of this story, so yes, I will be popping in to share my own perspective on occasion. That's selfishly what prompted me to turn my camera away from the mountains I love--for a time, at least. I've got plenty of my own inspiration and I think you can figure out yours too. Find a mentor, search a couple of diabetes related hashtags on social media, you get the idea.

Let's not forget the responsibility we have to demand accountability from the industry that makes insulin. Let's not forget the responsibility we have to call out the community and research organizations who value their relationships with industry more than the community of people they are meant to serve.

Ok, I'll get off my soapbox now.

If you want to share your story and perspective on insulin access, contact me. To support this project and get awesome perks, become a LivingVertical Patron


Are ketones dangerous?

Are ketones dangerous? The answer to that question is it depends. I think it's important to note that ketones still may pose a risk for those of us on a ketogenic diet, pursuing nutritional ketosis. I have blogged a lot over the years about the benefits of a ketogenic (low carb, high fat) diet for type 1 diabetes. I even wrote an eBook about it. I began my dietary experimentation after 15 years of living with diabetes so my discussion of this topic often assumes that readers are also aware of their own limits and responsibility to establish their limits before inviting complex experimentation. As exciting as the results of a ketogenic diet are, risks must be understood in order to proceed safely.

Ketones can indicate diabetic keto-acidosis or DKA, which is life-threatening insulin deficiency, for someone with type 1 diabetes. Sadly, far too many people with type 1 diabetes die from DKA every year. Although the risk is pretty low on an annual basis, there are large numbers of people who actually die from DKA. So, you can easily see why the medical system believes that ketones (or the condition it is associated with) can absolutely can be dangerous.We all enter into experimentation with ketosis having had the "ketones are dangerous" doctrine drilled into our heads from the time of diagnosis. When you have type 1 diabetes, assuming a standard carbohydrate driven diet, the appearance of ketones in any concentration suggests DKA (diabetic keto acidosis) which is life threatening! DKA occurs as a result of insulin deficiency and correlates with elevated blood glucose. In response, usually over a period of hours, the liver dumps ketones which accumulate in the bloodstream at levels approaching 20 mmol/l . At this level of concentration the blood acidifies and the symptoms of DKA set in. This condition requires insulin to slow the production of ketones and correct the elevated blood glucose.

The problem is that ketones in a standard carbohydrate diet only appear in response to this critical insulin deficiency and so their association is purely negative and tantamount to danger. The idea of pursuing ketone production on a much lower level as a means of health and energy isn't even in the picture. If I go to the hospital as a Type 1 Diabetic, I have to be very careful to let them know that I am in nutritional ketosis NOT DKA. Often times the mere presence of any ketones is a red flag since it's the primary marker for DKA. Few nurses or doctors will say, "Yes but how high are his ketones? Only 3 mmol/l? Oh--he might not be in DKA, we should see if he's in nutritional ketosis!" They are not testing to see how high the ketones are; they are only testing for presence or absence.

To be honest, there are SO FEW people pursuing nutritional ketosis that it is unrealistic to expect that every medical provider will be “hip” to T1D and/or nutritional ketosis. Frankly, even many national experts on T1D believe that nutritional ketones might cause DKA in high enough doses. Whether this is true or not remains to be seen, but you get the idea of the challenges a keto-friendly T1D person faces when intersecting with the carb-burning non-T1D world. Here is an example of the kinds of “cognitive dissonance” you should expect in the mainstream medical world:

I got a concerned email from a person who had been hospitalized with misdiagnosed "Keto Flu" after starting the ketogenic diet. Her blood glucose tested in normal range but feeling the flu-like symptoms that often times coincide with fat adaptation (requiring electrolytes and salt) alarmed her. She decided to play it safe and at the emergency room the staff only focused on her type 1 diabetes and the presence of ketones. They treated for DKA when she was actually not in DKA but had been producing lower levels of ketones through nutritional ketosis.

I experienced these same symptoms when I first started on the ketogenic diet (many people do-it's called the "Keto Flu") and I had the same concerns of DKA. I did some research and discovered that this was commonplace and not a danger so long as blood glucose was within acceptable range (which it was). I drank some bullion soup to get some extra salt, went to bed early and the next day the symptoms were gone and I was adapted to burning fat as my main source of energy! Still, it can be a tough call to make given the consequences and prudence is always the better part of valor.

Nutritional ketosis introduces ketones at a low level the body can use for energy and at a concentration that does not acidify the blood. Nutritional ketosis usually refers to ketone levels between 0-3 mmol/l whereas DKA sets in around 20mmol/l. However, without the black and white back drop of "no ketones=good, some ketones=danger" things can get a bit murky. When inviting an increase in blood ketones through nutrition it's important to note that this CAN contribute (even if only slightly) to slight head start for DKA in an insulin deficient scenario. In the fairly extensive research I have done about the question of "are ketones dangerous" I have not heard of anyone being able to generate anything even close to 20 mmol/l of ketones through nutritional ketosis. Still, that does not mean it's impossible or that we can afford to be complacent.

Many studies have associated insulin pump use with increased rates of DKA. The convenience of pump use may sadly come at a cost. If you are concerned about DKA and pumps, one possibility is to use long acting and a pump at the same time. This is one of many reasons I choose not to use an insulin pump. Bad sites, occlusions, cooked insulin from hot yoga, kinked tubing, empty insulin cartridges or dead batteries can all put you in a situation where you're headed for DKA and if you're already in nutritional ketosis--that very well may serve to grease the rails! If you already have a higher blood ketone level from nutritional ketosis it's also likely that you can go into DKA at a lower blood glucose level since less extreme highs and less duration of time would seem to be necessary to increase ketones to 20 mmol/l--a point that's relevant regardless of your chosen method of insulin delivery.

The flip side of this is that vigilance and attention to blood sugar will help interpret the appearance of ketones if you're prepared for more nuanced information. Nutritional ketosis alone (assuming "normal" titration of insulin and blood glucose levels) will not raise ketones to the point of DKA. Also, when on a low carb diet, blood glucose excursions are much smaller and much less frequent. Assuming the insulin one takes is reaching it's delivery target, the likelihood of going high enough to enter DKA is very low. Awareness of the change in risk management strategy is key-specifically in the first week or two of adapting to a ketogenic diet.

I'm not writing this to scare anyone or to back-pedal from my usually laudatory discussion of ketones. I'm sipping coffee with butter and beta hydroxybutyrate in it and preparing to go to the gym for a fasted training session later this afternoon. As beneficial as ketones are when understood fully and used properly, they are equally dangerous when approached without proper preparation and caution. I believe that there are not enough disclaimers in the world to replace common sense and individual responsibility. I am frequently torn between a desire to share the nearly magical properties of ketosis and to keep silent about them. Attention to detail is imperative; the ketogenic diet isn't something you wake up one morning and do haphazardly.

The keto-T1D community is a small slice of a small fraction of the US population. When you enter the carb-burning non-T1D world that most of us live in, be prepared to experience some misunderstanding.

I posted a photo on my facebook page recently discussing some of the benefits of ketosis relating to hypoglycemia. I received a comment complaining that I should offer more disclaimers or else people would take my post as being "prescriptive" leading to dangerous outcomes for the uninitiated. I pointed out that literally the first words of my post read: "First, a couple of disclaimers"

To this the commenter replied, "Oh well it's on Facebook, so I can't actually take the time to read anything but the teaser text"

Again, the first words were a disclaimer. Despite all of my best efforts, there will never be enough precautions to replace simply reading and researching. Common sense. Personal responsibility. Still, I wanted to have some information available for those willing to read about the points of caution that I have adhered to in my experiments. I am a big believer in ketogenic eating for type 1 diabetes but that doesn't mean I throw caution to the wind, much less advocate for others to do so.

  • Go gradually. Test often. Be aware of how your body feels. Insulin puts the brakes on ketone production; if you're having second thoughts, eat carbs and take insulin.
  • Cut carbs and replace those calories with fat-gradually, over time. Cut carbs by 20% every week or so until you're fully in the ketogenic zone (less than 50 grams daily). Once you're comfortable eating around 50 grams of carbs or fewer each day, then experiment with shifting calories from protein to fat while testing for ketones. A slower approach means smaller errors and smaller corrections to the process.
  • Going from high carb to low carb may take a month. Going from low carb to fat adapted (ketogenic) may take another month. Patience and a methodical approach will help it "stick" in the long run.
  • When shifting the majority of calorie intake to fat sources (ketogenic diets are usually a 75/25 ratio of fat to protein) prepare to supplement electrolytes (salt will do in an emergency) with magnesium, potassium and sodium. Failure to do this will lead to the "Keto flu". I learned this the hard way-stay hydrated and up the electrolytes!
  • Don't try to workout with any intensity until you're fully past the point of fat adaptation. It can be hard to resist the feelings of stable blood glucose and energy, but be patient and give it a couple of weeks. If you must, do very limited, low intensity exercise like walking. This helps you deal proactively with changes in insulin sensitivity and allows your body to learn this new "metabolic language" gradually.
  • Exogenous ketones can make a good thing better, but personally I did not try them within my first year on the ketogenic diet. I believe that the benefits are fantastic but the risks are much more significant given my type 1 diabetes. Being totally solid on a ketogenic diet is an important step to really understand how your body responds and if ketosis is something you want to venture deeper into.
  • Never get complacent. It only takes a skipped dose of insulin or a pump site gone bad overnight to put you in range of DKA. This is one reason why a full on keto diet might not be a great idea for teens or those who are more likely to be distracted.

It's not all bad news though. Plenty of people manage the risks of ketones with no problems. Plenty of people drive their car to work despite the obvious risks that require management. It's important to point out that a ketogenic diet is a low carb diet but not all low carb diets are ketogenic. Simply eating lower carb without getting into nutritional ketosis can be a much simpler way to gain 70-80% of the benefit of glycemic control with only 20% of the effort--but that's a topic for another post!

The takeaway from this discussion is that DKA kills many people, year after year. Don’t be complacent. The benefits of nutritional ketosis do not justify a lower level of vigilance against the dangers of diabetic keto-acidosis.