I have been recently diagnosed with Type 1 Diabetes after having constantly fluctuating weights and some other embarrassing symptoms that landed me in urgent care. I come from a Christian household so at the beginning of my diagnosis I acted like I didn’t have diabetes and it was all just stress. Even though I have nearly passed out due to severe hypoglycemic episodes, it still feels like my family does not believe I need help. Currently, I only have my Dexcom but that has been acting faulty the last couple of days.
I get very lonely when I have these hypoglycemic episodes and realize that there is no one to call. It also bothers me that my family would not know how to help me if I lose consciousness one day. When it happens and i almost pass out, I get scared that my family wont know what to do and I’ll end up in the hospital or worse a coma. I also don’t have any friends who understand that it’s autoimmune so it makes me want to not socialize as often because I shouldn’t be going out to eat all the time or straying from my schedule.
I guess it is just a stressful time because I’m studying for my MCAT, working, and feeling like shit every other day. I am not sure what advice I need but it’s nice to get this off my chest and hopefully, someone can relate.
Hi @BobBelcher and welcome to the forum. You’ll find lots of support and suggestions here from people who live with diabetes and who may have had an experience similar to yours.
I hope you have an endo who specializes in Type 1, and win you are comfortable with. You’ll be working with them from now on so having a good match is very important. You’ll be more comfotable opening up about how things are going for you, and asking questions, especially as you are learning. They may Diabetes Nurse Educator (Diabetes Care and Education Specialist) who will handle your training, in which case you will be working mostly with them. I’ve been on a pump for nearly 25 years, and took shots for 35 prior to that. I recall being on a schedule due to the peak time of my long-acting insulin. But I learned not to let it tie me down - I just made sure to eat when I needed to and incorporate that info my schedule. It’s something I got used to.
I too am from a Christian household. I was diagnosed at 3 and so I guess my parents learned out of necessity. If you’re thinking having a medical condition is caused by lack of faith, I hope you will reconsider and pray on it. God does not promise is a life without hardships, and some of those are medical. I have a friend who has epilepsy and her positive attitude and personal testimony following seizures is truly inspiring. So maybe there is something that can come out of this for you.
It’s important for families to learn what to do in case of an emergency - just as they would fit someone who had seizures or a heart condition. If you can, have a family member go with you to an appointment(s) as you are learning. They may well be willing and eager to learn, rather than sit by as bystanders watching you struggle and not knowing what to do. Ideally you will reach the point where you are able to handle lows in your own - and even better, learn how to manage your diabetes so they are few and far between. It takes some tweaking to find the right basal insulin dose and timing, and amount of insulin to take for the carbs you’re eating. And you need to learn to count those of you haven’t already. An appointment with a nutritionist is usually standard (I think and hope) for new Type 1s - and after all these years I occasionally go back for a refresher myself!
There’s a book called Think Like a Pancreas by Gary Scheiner. He has Type1 and is a Diabetes Care and Education Specialist so he had a unique perspective. I read it for the first time a couple of years ago and found it enlightening even after all my years. I think you will find it helpful. And I found it to be an enjoyable read!
Wishing you all the best on your MCAT. Perhaps the purpose of your diagnosis is to shed some personal light on life with diabetes to upcoming doctors. You say you feel like shit every other day so I hope you are working closely with your medical team to see what is going on. Dexcom is a tool and an important one, but it’s a guide to let you knew what’s going on, and from which you need to discern a response. Keeping a log is not just helpful but essential: as a future med student you know the importance of data, and the log will help you see trends. BTW, if you go to see a nutritionist it will be helpful to take one with you - if you don’t they’ll ask you to return with one so this week put you ahead of the game. I know it’s a lot to ask while you’re studying for your MCAT, but the goal is to help your doctor/DNE/dietitian fine tune your personal plan. You can keep a log in paper but there are lots of apps: I have a paid subscription to MyNetDiary but there are plenty of free ones: Sugarmate and MySugr are popular but it’s a question of finding the one you prefer.
Regarding lows: it’s important to treat them quickly, as you already know. Liquids work faster than solids so I chose juices (or soda, I confess). Some people find milk works well. It’s tempting to keep downing something until you start feeling better, but that can drive your numbers high. Juice is fine for a quick rise, but you need something to keep the numbers stable as well. Peanut butter -or cheese - crackers are good. Having said all that, we don’t give medical advice here - just share what we have found helpful (which I’m sure you appreciate as a future doctor) so talk with your doctor about how much to take to treat, and what to use. And especially what you can do to try to avoid those lows in the first place.
Please open up with your family about what’s going on, and get them on board as part of your team. My parents and sister did that for me, and my husband is part of my team now. There’s no shame in having diabetes, or in asking others to support you. They’re probably worried about what’s going on, and want to help.
There is an inhaled form of glucagon called Baqsimi. It’s used of a person is not able to take in something on their own to treat a low. Hopefully that will never happen to you but if it does it is an alternative to the glucagon injections, which can be intimidating for people. I consider Glucagon a treatment of last resort - hopefully you are able to manage lows on your own or with a little help to get some fast acting carbs down. In nearly 60 years with diabetes is only needed medical assistance or assistance from friends or family 4-5 times in all.
And I’m going to end now ("finally - will this woman every stop writing???) - I just got an alert than I’m 74 and may drop, so I’m going to take care of that.
Please keep in touch.
I don’t have years of experience with type 1 my daughter was diagnosed 10 months ago but I wanted to let you know that you are a very strong and you don’t have to do it alone. I know in my area the local chapter has meetings and events, try joining one. It has help me with support. They try and get together monthly or have walk a thons ( I think that is what its called). You can find within this website for your local chapter under community and there is also an area within the website for calander event. Lots of teen events and I think they connect in zoom or in person.
My daughter has felt the same way at times because we have a houseful of people and not alot of understanding.
I would like to tell you to maybe sit down and tell them the steps explaining what to do and it would give you the reassurance that is needed. Its a hard conversation to have if I mention anything like that with my daughter she doesnt want to talk about it, so I try a little bit at a time. It may open up a line of communication with them. You are in the right place keep up the good work!
Hi @BobBelcher . Haven’t heard back so I wanted to see how you’re doing. I hope you’ll check in soon.
Yes, sorry it has been a long couple of days. I appreciate your advice and read it as soon as I received it. I was able to speak with my mom about Diabetes and now it has truly brought us closer. She simply told me she was just scared and hates to see me feeling unwell because she loves me. She wants to be more involved if I would allow her (which I should have from the start). She even asked me to educate her on healthy eating and to come with me to my doctor’s appointments. I also reached out to my doctors and now I have an upcoming appointment with my nutritionist.
I also had a really good sugar/exercise/diet day. It gets a bit stressful and denial seems like the easiest way since this is a relatively new diagnosis and I have never had health problems. But I appreciate someone like you who has had diabetes for so long, it really made me feel much more hopeful and motivated (as cliche as that sounds. I am very glad I reached out in this forum when I was at a low because now look at me! So finally, thank you Dorie and I wish you nothing but the best
I actually did sign up for a walk-a-thon over the weekend and I am excited even though it’s in September. I definitely am glad that I opened up that line of communication.
Now, I think I am going to go look into those local chapters you mention. Thanks for the tip!
No need to apologize - everyone is busy and gets back when they are able.
Thanks you for writing back - I’m so glad things are turning around for you, and that opening up had been good for you and your family! It sounds like you’re off to a great start - and congrats on signing up for the walk-a-thon - September will be here before we know it! Not to nag, but do let your team know about it so they can give you guidance on keeping your numbers stable - not just during the actual event, but while training.
Looking forward to your contributions on the forum!
I didn’t even think to tell my team about my exercise, thanks for the tip!
I have gotten so much from the community that has helped me through. I’m happy to hear you are doing better. I think they wait for cooler weather for the walk a thons if they held them now I’m here in Florida and I probally only make it a block.
My pleasure. Don’t be surprised if you find you need to make some adjustments to your regimen - that’s normal.
BTW, when are your MCAT? You should request accommodation so you can manage as necessary during the test.
It’s not until January, I am just a bit overzealous with my studying right now. Yeah, I am already making changes to my exercise while keeping my eye on my dexcom.
I became a Type 1 diabetic 5 years ago at age 70, so I know what it is like to suddenly have to deal with diabetes as an adult.
Everyone is different, but my experience is that diabetes is a just nuisance if managed properly. I was admitted to the ICU with glucose over 1200 when I was first diagnosed, but have not required urgent medical care for my diabetes since I was discharged.
- Get a pump if you can. Your insurance should pay 80%, leaving you with a balance of about $1,000. There are various programs around to help if you are uninsured or can’t afford the co-pay. You will likely have to do some digging, but hopefully you can find something. The pump makes life a lot easier because it drips fast acting insulin 24/7, adjusts the flow as needed to help keep your glucose levels stable, and eliminates the need for long-acting insulin like Lantus.
- Avoid bingeing on high glycemic foods. For me, pastries and potato chips are a bigger problem than candy. Once you eat too much, it can take hours to get your glucose back under control and it is easy to overshoot and go low.
- Keep some fast acting carbs (e.g., candy, or fruit juice, or soft drinks with sugar,handy when you go low. They take about 15 minutes to act, so don’t take more after 5 or 10 minutes when you are still low, or you will go high. Use stuff you really like as your “anti-low medication” since you don’t get to eat them very often. Personally, I use Lindt truffle balls at home because they taste great, are individually wrapped and small enough that you can eat one (or two if you are below 60) without going too high. I carry Werther caramels in the car for use as needed since the Lindt balls will melt if left in a warm car.
- Keep a glucometer and test strips on hand to double check if you are not confident with the sensor readings. When I was using a Medtronic pump and sensor, I needed to calibrate at least 3 times a day. With the Tandem pump and Dexcom sensor, I generally have to calibrate once or twice in the first 24 hours after inserting a new sensor, but rarely otherwise.
- If you are having trouble figuring out how much carbohydrates you are eating, there is an excellent book called Calorie King that has tables of calories, carbohydrates, and sodium for thousands of basic foods and even a section on selections at a number of fast food restaurants. You can also get nutrition information online for most fast food places. Eating at sit-down restaurants is more difficult since they generally don’t provide nutrition information and so you have to guess based on what you think the ingredients are.
- With the Dexcom (and with a pump if you get one), read the instructions and follow them. You are much more likely to get good results following the instructions than you are if you make stuff up on your own.
- The bottom line is that the better you control your diabetes, the less you will have to worry about passing out, and the less stressed you will be.
Hi. Welcome to our world. All the above is very good advice, BUT, T1D is a very personal disease, you will, over time, find what works for you, keep your log, use your meter (I like One Touch, never had an issue), I find Dexcom very helpful but not always accurrate, my wife hates the low warnings, yesterday, while enroute to store, it sounded low, I finally pulled over, tested, and was 165, G6 said 67, you are new, you should soon be able to predict what your meter will read, as you age, you will probably lose some of that sensitivity, but, experience will help, if you pay attention. Where others say 15 minutes, my body takes 30 to react to a Payday bar, and an hour to an hour and a half to respond to a Humalog shot, we are all unique. Have some faith, you will survive, and, we need more doctors with T1D experience, go for it!. Bob Osthues, 67 years so far, am 80
Speaking of meters (CGM and other) and sensitivity to your feelings - technology is wonderful but it is good and important to recognize how you’re feeling. Some of us on the forum had had diabetes for over 20 years before the first very rudimentary home meters came out: we tested our urine a couple of times a day to see how much sugar was spilling out (some fun diabetes history for you) and otherwise learned to recognize our symptoms of lows and highs. My body sometimes notifies me while my Dexcom says I’m normal - in those cases that normal number is accompanied by down arrows so I know I need to keep watch. I’m not knocking the technology, just saying there is great value in learning to read your body’s signals too.