There are some things in life that can truly turn your world upside down, and diabetes is one of them. That period just after your (or your child’s) diagnosis can be an extremely intense time. You’re being bombarded with an avalanche of emotions — shock, fear, confusion, sadness, denial, anger, stress — as well as an avalanche of information and instructions. Somehow you’re expected to process all of it and get back to living your life.
Your medical provider is there to help… but insulin prescriptions, insulin to carb ratios and medical advice are just part of the big picture. That’s why Carb DM founder and executive director Tamar Sofer-Geri likes to say that the true experts on living with type 1 diabetes….. are people living with type 1 diabetes. Your “new” normal? They live it every day, so who better to ask when it comes to the ins and outs of living with type 1 diabetes?
Tamar compiled all the knowledge and wisdom she has gained over the years, all the advice she has gotten from the T1D community, into a talk called Getting Started With Diabetes. She presented it at Carb DM’s latest Type 1 Topics event to help those who have been newly diagnosed with type 1 diabetes to adjust… and more than that, to thrive. Here’s a recap:
Getting started with type 1 diabetes can be summarized into three main areas:
- Get Organized
- Get Informed
- Get Support
Tamar spent the evening going through each of those points in greater detail:
Choose a pack. Having T1D means walking around with a backpack for the rest of your life — both literally and figuratively! Choose a diabetes supply bag that you (or your child) will want to carry around. Don’t think of a diabetes bag as a supply bag, think of it as an accessory. Get one you like, and switch it around.
Gather your supplies. The essentials include a meter, strips, a lancet, insulin, syringes, low supplies, and a glucagon kit. Tip: you don’t have to use the pricker that comes with your meter! And you don’t really need to use alcohol to swab your test site.
Get creative with low supplies. Like your diabetes bag, think outside the “glucose tab” box, and be prepared to change often (no one wants to eat Skittles for the rest of their life!). Anything with sugar will serve to bring up a low — suggestions include juice boxes, sugar cubes, jelly beans, honey sticks, mini marshmallows, gummies, and more.
Know your options for insulin delivery devices. Syringes, pens, insulin pumps — there are lots of options!
Know your options for insulins. Be aware of the shift in language that happens when you shift devices (from “long acting” to “basal” and from “fast acting” to “bolus”). Also, be aware that some kinds of insulins work better for different people, and some kinds of insulin seem to work better in pumps vs syringes or pens, even though they are pharmacologically identical! Don’t be afraid to ask questions! Tip: look for programs that give free insulin. Even if you are on a pump, it’s a good idea to have some long-acting insulin just in case your pump stops working and you need to go back to shots.
Know Your Math. Become familiar with insulin to carb ratios and carb counting. Don’t hesitate to ask questions! Nothing about carb counting is simple; it involves lots of eyeballing and guesstimation. Different people use different carb counting methods that work for them (entering odd numbers, rounding up, etc..). Tip: get a carb counting app that helps you eyeball portion sizes, such as figwee.
Exercise is important. Know your body and become familiar how exercise affects it. Never exercise without having low supplies nearby!
Get informed about ketones. Make sure you understand what your doctor tells you about ketones and sick days (check out our T1 Topics recap on ketones and sick day management!). Blood ketone meters are the gold standard for checking ketone levels, but the strips are expensive! Urine strips are fine — cheaper and convenient (except at night!), but they give “old” information. Always take a ketone meter with you when you travel or for any overnight stays.
Think of health first, diabetes second. Keep the whole person in mind — remember that you (or your child) are a person before a person with diabetes. Aim to be a healthy, happy person, and don’t just focus on food and blood sugars. When making changes in eating habits, make it for the whole family, and make sure the whole family is on board with the change, otherwise the person with T1D may feel that they ruined everyone’s life.
To Be or Not To Be Carb Free? The only times carb-free diets are recommended are when trying to figure out your basal rates — go carb free for a few hours to see what happens to your blood sugar levels and whether you need more basal insulin. It might also be a good idea to go low on carbs when you find yourself without insulin (or low on insulin) for a period of time, or if you’re hungry and your blood sugar is high — but don’t go carb free for extended periods of time. Remember, keep the whole person in mind — you’re not a bad person if you have some carbs and bolus for them!
Numbers are Data, Knowledge is Power. Language can be your worst enemy, so avoid the “Good/Bad” Numbers language from the start. Numbers are just data, and the only bad numbers are the ones you don’t know. Check your blood sugar, don’t test it — you can’t fail a check. Adjust, don’t correct your numbers — they weren’t wrong to begin with. When checking your child’s numbers, try not to react to them. Simply say, “Thank you for checking”.
Local and online diabetes resources. JDRF, Diabetes Hands Foundation, Diabetes Youth Families, Brave Buddies, and the American Diabetes Association are just some of the resources available to people with T1D and their families. Don’t forget to check out Carb DM’s Newly Diagnosed section!
Join a diabetes study. Researchers are always conducting studies for new medicines and new technologies for type 1 diabetes. Many of these clinical trials rely on volunteers to participate. Volunteering for these studies can be a lot of fun, and in many cases financial compensation is offered. Volunteers have the opportunity to contribute to the T1D community and to science, and get to hang out with some really cool people!
Find your tribe. A support system is critical for long term health management! Whether it’s an online community like Brave Buddies, an online/real-life community like Carb DM, people from diabetes camp, a circle of good friends, or a loving family, find people who love you and understand you and support you.
Watch Tamar’s full presentation below. Do you have any tips for families getting started with type 1 diabetes? Leave a comment here!
Disclaimer: The tips offered on this post are not intended to constitute medical advice. We are simply sharing what has worked for many people. Everyone’s diabetes is different, and what has worked for others may not work for everyone. Talk to your medical provider about your specific treatment plan.