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Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin--Completely Revised and Updated (Marlowe Diabetes Library)?
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30 reviews of this product found across Reddit:
I'm sorry you weren't initially properly taught how to manage type 1 diabetes. It almost sounds like you have type 2, because I have never heard of "pre-diabetes" in relation to type 1.
Since you just moved, don't rely on an ordinary primary care physician. You need an actual endocrinologist and you should tell them you need diabetes education asap.
I'm glad you are reaching out to learn but it's just more than someone can type in an online post. The best boom I've read so far is "Think like a Pancreas" by Gary Scheiner
https://www.amazon.com/dp/0738215147/ref=cm_sw_r_cp_apa_glt_fabc_KHG4R9XCMTCPYW1N3HQF
My wife was diagnosed at 25. It was a drastic change. No one at the hospital or the first couple doctors was useful. We would not have had a hope had someone not recommended (and lent us) "Think Like a Pancreas" by Gary Scheiner. It's $10 on Amazon. link
Just another note, don't let anyone tell you bullshit like you can only have sugar free or you'll never eat bread again. (both of these things the nurse in the emergency room told us). It sucks, it's a big change, it will make you cry at times, but you will make it. Get a pump and CGM as soon as you can.
I am so sorry you are going through this, both of you. Endocrinologists have been unhelpful at best in my experience, unfortunately. It seems like they may have even caused issues with food/self care for your boyfriend. If you have not yet please buy and read Think like a Pancreas, by Gary Scheiner. In the meantime, please understand that not eating means not taking insulin. Taking insulin regularly is very important. On top of base insulin (basal on pump, Lantus etc.) eating a meal or snack with some carbs at least every 3-6 hours means he can take insulin as well. DRINK WATER AND DOSE INSULIN REGULARLY TO AVOID DKA. You can both do this. He is NOT BAD at this. This is really fucking hard. Source: taken care of my t1 teenager since '15.
My go-to recommendation for learning the current standard of care basics is Think Like a Pancreas, you'll also definitely want to find an Endocrinologist, but any doctor will do in the short term to get you set up with supplies.
T1 is a jarring condition. It takes a while to learn, and a while for everything about it to feel normal, but you'll get there. Try to start with the basics and don't get overwhelmed with all the info available out there.
I strongly encourage you to read:
Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin by Gary Scheiner.
https://www.amazon.com/Think-Like-Pancreas-Practical-Insulin-Completely/dp/0738215147
Amazon link is just for clarification as this is the 2nd edition. He is scheduled to release a 3rd edition in May 2020 if I am not mistaken. Check your library as many do have this.
This book will help.
Welcome to the club.
I've was diagnosed when I was 7. I'm now 33. The best advice I can give you is, don't beat yourself up. It's a steep learning curve. Don't expect to master it over night. And, realize you're human first, then diabetic. Don't forget to take care of yourself. Have fun and treat yourself. Stay on top of your mental health. The best book I can recommend is "Think like a Pancreas"by Gary Scheiner (who is an endocrinologist living with t1).
The challenge you'll have is figuring out correct basal patterns for different types of days (work, sick, etc). I highly recommend you get this book: https://www.amazon.com/Think-Like-Pancreas-Practical-Insulin-Completely/dp/0738215147. This new edition has a chapter on basal patterns and how to adjust them.
Highly recommend picking up a copy of Think Like a Pancreas for more thorough info on ratios and correction factors and such. Even before your endo starts getting into this with you, you'll probably find it a really helpful read.
Honestly they should teach you this stuff the same day they hand you your first pen of insulin.
The explanation from IHaveTheBestCandy is really good - for a more in depth treatment read Think Like A Pancreas. I read this about a fortnight after being diagnosed and it was by far the most useful thing I found in managing my diabetes. https://www.amazon.co.uk/Think-Like-Pancreas-Practical-Managing-Diabetes-Insulin-Completely/dp/0738215147
Best of luck with your new learning curve. And stick around - this sub is about the best place I've found for sane diabetes discussion :-)
Until you're on a pump, the mySugr app is a really great tracker for logging doses and food.
Your doctor will likely slowly ramp you into the current best practices for insulin management, so don't worry if you don't get info about carb counting and ratios and things like that that you might see around here. Just go by their recommendations for now; eventually you'll be tuning everything yourself when you're comfortable.
This book is a really great comprehensive overview of how the disease works and how we typically manage it.
As mentioned by others, start looking into Dexcom availability in your area (and if it's available, look into whether your insurance will cover it; if so, it's a no-brainer — if not, probably still worth it, but might have to move some things around financially.)
We used a OneTouch Verio Flex glucometer when we started, which did a decent job of Bluetooth syncing to an iPhone. The Contour Next is also really popular.
Our kid has had this case for all his gear for two years now, and it's held up really well.
We've had similar long-lasting life out of his RoadID bracelet. (Select the "rugged" faceplate when customizing, to get one with raised edges — prevents the text rubbing off over time.)
https://www.amazon.com/Think-Like-Pancreas-Practical-Insulin-Completely/dp/0738215147
https://www.amazon.com/Athletes-Guide-Diabetes-Sheri-Colberg/dp/1492572845/ref=sr_1_6?dchild=1&keywords=exercise+diabetes&qid=1615248333&s=books&sr=1-6 (this one I haven't read but looks well recommended)
Hey, friend, I'm sorry you're struggling. Diabetes absolutely sucks.
If you search for a therapist, perhaps try to find one who specializes in helping people with chronic health conditions? A popular website for finding therapists is Psychology Today (that's the US site; here's the page to select a different country). Just do an initial search in your city, then click the "Issues" tab and select "Chronic Illness," "Depression," and whatever else you might want help with. You'll be presented with a list of nearby therapists who match your criteria. You can call or email the people on the list and ask if they have experience with diabetics in particular, if you want.
I was only diagnosed last year, but my older sibling was diagnosed as a kid over 30 years ago. They grew up going from one bad endo to the next, endos who just said "Do this" and "Don't do that" and "Why aren't you doing this better" instead of listening to them, problem-solving with them, answering questions, and teaching them. Despite growing up with it, there was a hell of a lot my sibling never learned about managing diabetes. They were miserable, dealing with a lot of the same feelings you are now, including questioning whether it was worth living with at all.
Only fairly recently--when they were older than you are now!--did my sibling find an endo who said "Everyone's disease is different and there's no one-size-fits-all treatment. You have to experiment on yourself to figure out what works for you." And that's when things started to click, and to improve.
If you feel like maybe you're in the same situation, I'd recommend you check out things like:
- Sugar Surfing (website with articles and a popular PDF book on diabetes management)
- Think Like a Pancreas by Gary Scheiner (a good Diabetes 101 book, written by a T1)
- The Diabetes Solution by Dr. Richard Bernstein (also a T1. His diet plan and insulin regimen are EXTREME and not a good fit for most people, but the book is still full of other good info about diabetes and diabetes management)
- mySugr blog (with articles/tutorials like how to test your basal rate, how to know when to prebolus, and how to make sure you're using the right carb ratio and correction factor
- diaTribe (with articles/tutorials like this one on how not to overtreat a hypo, which is actually taken from Think Like a Pancreas)
- The Juicebox Podcast (which I haven't listened to, but I've seen a bunch of people say it's helped them)
- Beyond Type 1 (with articles/tutorials like how various medicines can affect diabetes management, and a basic intro to the glycemic index)
- Sugar High (a YouTube channel run by a physician assistant who specializes in diabetes)
And there are plenty more resources out there. r/diabetes and r/diabetes_t1 are also worth joining, and I bet you can find some good communities on Instagram, Facebook, Twitter, or wherever you spend time. You may not have anyone IRL who understands what you're going through, but there are tons of us online who do. You're definitely not alone.
Read this book, "Think like a Pancreas:" https://www.amazon.com/Think-Like-Pancreas-Practical-Insulin-Completely/dp/0738215147 to get an idea of what T1s do.
For my friend, T1 is like having an extra daily part time job. So treat your partner as if they literally have a part time job called T1 in addition to everything else you see.
I think the main difference with other chronic lifelong diseases is that T1 gets you mentally because of these factors:
- You make a LOT of daily decisions with T1.
- You do a lot of ridiculous math and risk/benefit decisions daily with T1.
- You are told to "manage" and "control" T1, but keep in mind that any nutrition label, any blood glucose meter, any CGM, can be up to 20% off and be perfectly and legally accurate. Add that you don't always know how things like illness, stress, adrenaline, your liver (can put out sugar), time of day, day of menstrual cycle, and if there are protein and fats with the food may make your math completely off.
- Things just don't work sometimes. Sensors and pump sites rip off when you get dressed, walk by a cabinet, or drop your pump. Site canulas and sensor wires can get bent or hit a small vein.
- When you are low or you are high, you are not always aware, and your brain may fight that. T1s may ask for help, or not ask for help, or get tired/drunk sounding, or get amazingly crabby, or stubborn, or argumentative when what they need to do is eat some sugar or do a correction bolus. Their brain isn't working well for those moments. When BGs go back to normal I find they honestly don't remember or believe how crabby or stubborn they can be. It can be hard to be patient because it still feels "real" in the moment, same voice same person looking at you. But it's not really.
- T1s are at higher risk for depression and anxiety, see above.
- T1 are project managers. You need all kinds of supplies all over the place from all different suppliers, pharmacies and stores. Nothing times together. CGMS last so many months, pump supplies come on another schedule. Insulin prescriptions on another. Tons of packaging and boxes to organize, you think you have supplies and then poof you are missing something. Updates are cool, but my friend just had her phone update and now the sensor app won't work until that app is updated.
- Keep glucose tabs everywhere, especially in the car. T1s in my state need a doctor's note still to authorize their license. If my friend were ever low while driving and couldn't just pull over and eat sugar, it would be a license suspension for months.
- There is a lot of "data" for T1s now but it's not all information. Sure you can get numbers and graphs, but ask your partner how much time exactly her endo or diabetes educator actually looks at a graph before suggesting a basal or bolus ratio change, it's not much. The data has 20% error and it's more of a "I see this trend, let's try this...kind of educated guess and check." Yes endos and diabetes educators are key but wow sometime my friend is the one that is educating them. Yes they have the medical knowledge and what tests to request but the provider-patient conversation isn't one sided, they often don't really know the day to day realities of T1, pumps, CGMs. It's almost like provider-advocate conversations.
- Have some kind of emergency kit like a glucagon kit at home in case your friend cannot eat glucose or swallow. Glucagon is shelf stable, and like an epipen is used in emergencies only, it buys you time to call 911. Basically a glucagon pen tells your liver to dump all of the stored glucose (in glucagon form) it has. I've never had to use it but you can't use it if you don't have the kit.
- People in general interact with T1 in these three wasy: Oblivious, have some sense that insulin pumps are amazing and basically T1 is magically automated, T1s are complete idiots--you are eating candy? (or any carbs) My friend with diabetes (T2) can't do that, they had to be really disciplined about their eating. You are low? How can I help? (Let me eat the darn candy in peace.)
- Not something that makes T1s any happier really but as a partner, it's pretty cool that just a few years ago in human history, 1921, insulin was invented. Before that your friend would not have had a 13 year anniversary.
​
There's more but this list may get you thinking. The main difference is the daily stress/cognitive load T1 puts on a person.
Support isn't a black and white thing. Sometimes you can help, sometimes you can be patient, sometimes you can advocate, sometimes you can try to be understanding, sometimes you can't do anything at all. There is a caretaker stress for those with T1s too. It's not talked about much because T1s are going through a whole lot more themselves than caretakers/partners and it just seems crazy to think about let alone say aloud, but it's real too.
Zero guidance from your doctor = time for a new doctor.
One of the best books you can get is this one - Diabetes 101: https://www.amazon.com/Think-Like-Pancreas-Practical-Insulin-Completely/dp/0738215147
This guy is diabetic and I’ve found his book very useful. Not low carb but very good for understanding how insulin works and it’s very readable/accessible
https://www.amazon.co.uk/Think-Like-Pancreas-Practical-Insulin-Completely/dp/0738215147
You already have a lot of comments so to keep it simple -
- get a CGM
- get a food scale
- read this book: https://www.amazon.com/Think-Like-Pancreas-Practical-Insulin-Completely/dp/0738215147
Per <em>Think Like a Pancreas</em> it's 1.5 hours.
Most people generally will do corrections using their correction factor / ISF rather than work off a sliding scale like what you're describing. This goes with carb counting and basal testing to work out your basal rates and carb ratios at different times of the day.
I'd recommend not sticking with a sliding scale for longer than you need to. It's really a tragedy that it is taught to new diabetics at all. Here is some reading material if you're interested: https://www.amazon.com/Think-Like-Pancreas-Practical-Insulin-Completely/dp/0738215147
Others have some put some great real world info here. I'd only add that these 2 books were quite helpful.
Think Like a Pancreas
https://www.amazon.com/Think-Like-Pancreas-Practical-Insulin-Completely/dp/0738215147/
Diabetic Athletes Handbook
https://www.amazon.com/Diabetic-Athletes-Handbook-Sheri-Colberg/dp/0736074937
> It is so frustrating bc I do everything they tell me but I cannot keep my blood sugar level
Might not be a popular opinion but until you learn to leverage the action of insulin on your own better - this will always be your result. Relying on doctors to tell you what to do is kind of a recipe for sub-par control.
If you don't have a CGM, I would start with acquiring one, then read Think like a Pancreas and then maybe Sugar Surfing.
Life will get easier and routine will eventually become second nature. Also I would push your doctor to prescribe a continuous glucose monitor asap as they make managing T1 diabetes so much easier as it gives you your blood sugar and a graph of the trend every 5 minutes.
A couple books that are good resources: https://www.amazon.com/Think-Like-Pancreas-Practical-Insulin-Completely/dp/0738215147
If you can, pick up a couple books: Think Like a Pancreas, by Gary Scheiner, and Sugar Surfing, by Stephen Ponder. I learned so much from both books, even after being Type 1 for a decade & a half.
Here's the book: Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin--Completely Revised and Updated https://www.amazon.com/dp/0738215147/ref=cm_sw_r_other_awd_32I6wb343CAPD
I absolutely love my Dexcom. However I have insurance that pays for all durable medical equipment and I definitely wouldn't be able to afford the sensors otherwise. I do get 10-12 days out of one sensor though so it still may be worth you getting a price estimate from them!
I do have a child! Pregnancy with diabetes is far from trivial, but it is doable. You'd be amazed at the amount of motivation that appears out of nowhere once another life is involved! This is a good intro and reference to pregnancy with diabetes: Balancing Pregnancy with Pre-existing Diabetes: Healthy Mom, Healthy Baby https://www.amazon.com/dp/1932603328/ref=cm_sw_r_other_awd_d7I6wb4NHH7NZ . I also was hugely inspired by Kerry Sparling's blog, SixUntilMe. Look it up, she's amazing (and very real)!
I recommend the book Think Like A Pancreas It's written by a type 1 who is also a CDE and has tons of great information about basal rates and carb ratios.
Havent ready it myself but I've heard people recommend http://www.amazon.com/Think-Like-Pancreas-Practical-Insulin-Completely/dp/0738215147
Read Think Like A Pancreas - an excellent book that covers everything you need to know about carb counting. This is the number one thing you need to get the hang of to control your diabetes properly. http://www.amazon.co.uk/Think-Like-Pancreas-Practical-Insulin--Completely/dp/0738215147/ref=sr_1_1?s=books&ie=UTF8&qid=1422127481&sr=1-1&keywords=think+like+a+pancreas
You might also find the Carbs and Cals books helpful for working out carbs http://www.amazon.co.uk/Carbs-Cals-Count-Calories-Photos/dp/1908261064/ref=sr_1_1?s=books&ie=UTF8&qid=1422127636&sr=1-1&keywords=carbs+and+cals
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