I remember the day I was diagnosed with Type One Diabetes (T1D) like it was yesterday. It was the summer of 1984, I was 7 years old and just finished 1st grade. My mom had us going to summer camp in Salt Lake City. That morning our camp group went on a long hike in the foothills to the big “H” on the hill. I remember being thirsty and sooo tired but I figured it was from the hike. When we returned to camp, I vividly remember walking in the big doors and seeing my mom standing at the top of the steps. She was waiting for me to go to the doctor because the urine sample from my annual check-up was “off”. I remember being in the office when the doctor said to my mom your daughter has Type One Diabetes. I could tell my mom was holding back her worry and fighting the tears. I remember her asking the doc if we could stop by the store so I could get some jammies since I was told to go to the hospital, but the doc gave strict orders to go straight to Primary Children’s Hospital... I love my mom….we stopped anyway!
In June it will be 37 years ago, and as you can imagine the technology and the understanding of Type One Diabetes was lacking! But I will say after all these years of living with Type One, as I know better, I do better. Plus, my support system over the years was, and still is, AMAZING!
Which brings me to the reason for writing this post. This past year I have had two friends have children get diagnosed with T1D, one just this week. I thought to myself, could I create a list of tips to make their life easier. Since I’m getting ready to celebrate my 37th Diaversary I thought I would list 37 lessons, helpful links, and tidbits I’ve learned over the years! Hopefully they will help you in your journey as well.
- Give up on the idea of being perfect, just do your best each day and know some days will be better than others.
- There are a variety of ways to control your blood sugar, MDI (multiple daily injections with insulin pens, smart pens or vials of insulin and syringes), insulin pump therapy (there are currently three to choose from: Medtronic, Omni-Pod & Tandem), and even inhaled insulin (Afrezza).
- Apps can be your best friend for counting carbs. You can just ASK SIRI..."How Many Carbs are In..." or use apps such as, MyFitnessPal, CarbManager (meant for Keto dieters but I like how it shows the carbs - focus on total not net), and GlucoseBuddy and SugarMate are a few that I have tried and like.
- You are not always going to count your carbs correctly... and it’s okay! I still miscount!
- One Skittle is equal to one carb – 8-20 should raise your blood sugar adequately depending on your weight and insulin management system (closed loop friends may not need as many carbs to raise a low).
- 1 AirHead candy is 15 carbs, the minis are 8 carbs. My favorite part is they are individually wrapped and fit in your pocket – perfect for those pesky lows.
- Eating too much sugar-free candy can give you the runs!
- Sugar free does not mean carb free! Read the label it can still raise your blood sugar. Honestly, I do not even mess around with sugar-free foods, I’d rather have the real stuff. Except for sugar-free sodas/drinks – those I will always choose over a regular one.
- Baby carrots have 8 grams of carbs in a 3 oz. serving but will raise your blood sugar slower than Skittles.
- Your blood sugar naturally rises in the morning just by waking up...they call it Dawn Phenomenon, so sometimes you need to take more insulin in the morning.
- You can do the same thing day after day and get different results.
- When your blood sugar reads 100 in the diabetes world we call it a
“unicorn”. - CGMs (Continuous Glucose Monitors) I think are one of the best inventions for T1D- you have multiple choices (Dexcom, Medtronic or the Freestyle Libre), and you know exactly where your sugars are. Dexcom & Medtronic will even alert you when your sugars are trending HI or LOW
- When you meet someone with Type One Diabetes you have an instantaneous understanding of each other.
- When you are low you don’t think straight.
- Same for when your blood sugar is high...You just feel off, sometimes sick, moody, etc..
- Water, insulin and a walk can help lower blood sugar when high.
- Everyone’s Type One is slightly different, what may work for you may not for someone else.
- Type One Diabetes taught me resilience and responsibility from a young age.
- I recommend sharing with others that you have TID ... it not only helps educate others but also builds up your network in case you need help.
- There are cool medic alerts these days! Gone are the days of the bland silver chain & charm, now you can get trendy bracelets or necklaces, and they even have alerts for your watch band. Check out some of my favorites: www.roadID.com, www.Laurenshope.com
- Never take a test for school when you are low.... See point #15. Also make sure your school and teachers know about your T1D (or if out of school a few colleagues). Have an action plan in case you go low. If you are in college T1D falls under the American Disabilities ACT and you can get special accommodations.
- You can exercise, weight lift, ski, swim, play all sports, etc... with Type One Diabetes, you just need to take it into account. There are numerous pro-athletes and celebrities that have T1D: Singer Nick Jonas, Supreme Court Justice Sonia Sotomayor, Actor Victor Garber, Author Anne Rice, Singer Bret Michaels, Olympic Swimmer Gary Hall Jr., Baseball Player Dustin McGowan, Football players Mark Andrews and DeAndre Carter, to name a few.
- Cinnamon won’t cure your diabetes.
- You can hack older Medtronic pumps and the omni pod pump with the Riley link and Loop (create a closed loop system), which helps to auto correct lows and highs.
- Having Type One Diabetes does not mean you have to cut out carbs...YES YOU CAN EAT THAT CAKE!
- Not all carbs are created equal - pizza and Chinese food, are difficult for me to manage (really any high fat/high carb food) ... but I still eat them. I just have to manage them differently than when I eat chicken and rice.
- Measure your portions until you know how many carbs are in your favorite foods... pretty soon, you can eyeball something and be spot on
- Diabetic camps are pretty cool... there are both summer and winter camps that encompass everything camp has to offer. As well camps specializing in specific activities such as skiing, snowboarding, equestrian, and hiking....Google T1D camps in your area.
- Don’t compare your journey to others... everyone starts somewhere, everyone falls, and we all CAN get back up again!
- Look for ways to connect with others living with T1D... local groups, JDRF, or create your own like I did with Wine About Diabetes!
- Push for what you want... sometimes you must fight your insurance company, or continually ask your doctor for what you want. REMEMBER…If you’re not getting the answers you want you can always switch doctors or find a different insurance company (it’s okay I promise)
- Technology is amazing but know when to ignore it. You can get obsessed ... unless my pump is beeping, I try not to look at it. No beeping means I am in range.
- Trust your instincts ... they are usually right.
- Get involved with an organization that supports Type One Diabetes. Our family supports JDRF but there are tons of others such as TCOYD, Children with Diabetes, Beyond Type One. The more you are involved the know you are in the know.
- Don’t stop educating yourself! Even after 37 years I’m still learning new things... knowledge is key to helping you control this condition.
- Always carry a back-up - back up battery (if on pump) test strips, insulin pen or syringe and insulin... decide what is necessary to get you by for 2-48 hours (depending on your situation) and carry it with you!
**BONUS** Always bring more supplies than you think you will need for vacations (even a short weekend getaway). It is inevitable this is when your insulin goes bad, a site falls off, or a pump fails.
Its crazy because I thought it would take me forever to come up with 37…er 38 items but it was crazy how fast they came to me… and I have even more to share. Guess that means another post for the future. If you are newly diagnosed with Type One Diabetes or you’ve been on this ride for a while, I hope you find some tidbits that are helpful in your journey.