I really think young people need a mentor program to help transition into a diabetic life.
I’ve known a few young people who struggle and their docs and family can’t really know what it’s like day to day.
I met a family at a park, and the 15 year old wanted to ignore it. He was out of control. I sat and talked to him a while, but taht was it.
I know another teenage girl who was never able to
I’m 44 and just diagnosed with type 1 LADA in March. Scariest thing in the world! So hard to gather all the information…
Had a 5.1 a1c every year until this past November when it was 6 and my dr. told me I am prediabetic. Within 2 months my A1C was over 10!!
I could really use a mentor even though I am not a kid.
Sorry to hear of your diagnosis. Why it is hard to swallow, it will eventually become second hand.
On a positive note, there has never been a better time to be diagnosed. Diabetes is one disease that responds very well to technology and modern insulin. The advancement in the last 10 years is amazing.
Hang in there.
Thanks for your response. I’m having a hard time. “You can’t teach an old dog new tricks”.
I’d like a program like this. I am 29, going to be 30 this year. I got a small amount of diabetes education, and was left on my own. I could ask for help with nurses at my doc’s office, but having a mentor would be great! I also have sleep apnea and found a mentorship program for that easily. I’ve not had to contact my mentor as I’m in support groups on social media.
Dario is a company that provides meter and bg strips, and data is shared with their staff that provide support and coaching. I have not used, and don’t know anyone personally that has. But something you could look into, and confirm if insurance may cover.
DIY Loop offers a mentor program but it is specifically for those needing help with Loop. Volunteers offer to help those new to Loop with setup and configuration as well a fine tuning settings in response to BG graphs.
Onedrop does this as well and I have personally used it when they first came out with the program as it is included with their unlimited strip program. I didn’t find it super useful but I think a newbie would get a lot of value from it and it is clinically proven to drop your A1C by IIRC 1.5 points.
As for a mentor-ship program I would be happy to join something like that if there is one that either already exists or if someone sets it up.
@T1Dstinks and @dogdemon or whoever needs help!
Anyone needing help ask away. There are lots of people here that are always willing to answer any questions. And there is usually someone that has been through or wondered the same thing at some point.
Anyone can always ask me and I am more than willing to try to help. You can private message me if you prefer too. I will always help any way I can to whoever needs it. This disease is hard at the beginning, and is a huge learning curve at first but it does become easier. I was left on my own pretty much at the beginning and I had to learn from others.
I was 46 when I “got” diabetes, although in my case I was misdiagnosed as a type 2 for over 8 years. It sounds like your pancreas gave up quicker @T1Dstinks than a lot of LADA’s. usually it’s a slower process when we get type 1 when we are older.
Just some basic information when you are new to this.
The best thing to get is a CGM. A Libra will work and is more affordable if your insurance doesn’t cover all or any of it. But a Dexcom is the best. A cgm gives you 24/7 readings and is really useful for what your blood sugars are trending. It also saves your fingers from so many finger stickings.
Blood sugar levels can be erratic at the beginning because your pancreas is usually still trying to work some and so your blood sugar levels can change day to day. It makes it harder to have good control. Starting a long lasting insulin and fast acting insulin can vary per your doctor and your needs but you will end up needing a long acting insulin which is suppose to cover the glucose your liver puts out and a fast acting one based on the carbs you eat.
Sometimes with a fast acting they start you out at a preset amount, but the quicker you learn to carb count and be able to adjust the amount of insulin to what you eat, the better off you will be.
Contour who makes glucose meters used to offer people in the US a free “kit”, meter, strips and lancing device to type 1’s, maybe type 2’s too. I think they still do but I am not sure, you could try to call them, extra meters are always helpful.
And one of the most important things is always keep a hypo treatment available where ever you go and by your bedside. I use shelf stable OJ by the bed and carry vegan gummy bears in my purse. At 2 carbs each, it’s easy to know how many carbs you are downing. Smarties and skittles are also popular.
When I was in college (big state University), I was recruited by state university hospital staff to help mentor diabetic high-school age students through some difficult times. Generally I was called in not on initial diagnosis, but instead kids staying inpatient in the hospital to help sort things out after repeated hosptalizations for DKA.
The help I gave was a more emotional/motivational rather than medical. Some of the kids had severe family problems, many had severe school problems, but most were simply in need of some encouragement that yes there is light at the end of the tunnel. That yes you can take the problems and work through them.
I enjoyed it and there were real benefits in this for me as well. Things were not always smooth sailing for me, but helping others with much more severe problems left me with more confidence to deal with my usually less-severe problems on my own.
Although similar to having mentor, there are diabetes “behavioral centers”, such as the one linked below.
However would likely be a cost, and may be covered by insurance, or may have some helpful info on websites. Your local endo or cde may be aware of similar resources in local area, but with newer tele-health options, may be able to chose any.
https://www.ohsu.edu/schnitzer-diabetes-center/behavioral-health-and-diabetes
I agree with what @Marie20 and others have written. You can learn a lot by asking questions on this forum. A mentor program implies more one-on-one help and that may be your preferred format.
There is, however, no substitute for doing your own homework and learning the basics of using insulin to manage glucose. There are many great books that provide insulin dosing information.
Perhaps the best combination is personal study combined with both individual peer advice and group advice on a forum like this. Just remember that we cannot replace the function of your doctor and the personal customized medical advice the s/he gives you.
That being said, I’ll add my offer to provide individual help via private messages. While there is a lot to learn, it doesn’t take too long to gain a comfortable familiarity with this skill set. Good luck!
As @Terry4 Has mentioned there are some good books out there. These are the 3 that are the most recommended ones.
Sugar Surfing by Stephen Ponder
Think Like a Pancreas by Gary Scheiner
Pumping Insulin by John Walsh
Stephen Ponder also has a wonderful website with all sorts of information on it.
I would add to Marie’s list: The Book of Better by Eichten. This book is a quick read filled with many humorous drawings. It’s a book that can adjust how you look at diabetes, a philosophical perspective.
As someone who has had type 1 over 50 years, I think a mentor thing would be great. Many folks with psychiatric illnesses have peer mentors to help them relate. It would be great if they had this for diabetics. Managing diabetes and dealing with the issues diabetes brings us can be really lonely. It’s not so much medical advice needed, as the day to day support to keep on doing what you’re doing. I found that when I was younger, I had an eating disorder, and what helped me was calling someone every day with my food plan. It’s being accountable to another person. I think that people knowing that they are not alone that they are not the only people going through this is very helpful. I got help with the eating disorder through a 12-step program, It was free. I changed my diet, it reeally helped me. With diabetes, some folks need more support than others. I was one of those. I don’t think you have to have your act totally together. But you do have to be honest. I really think having some kind of peer mentoring thing set up both for younger diabetics and for older diabetics who need it would be great. I am kind of surprised no institution that i know of has done this.