Hey everyone! Just looking for some experiences from people that were diagnosed with type 1 as an adult. I am 27 years old and was diagnosed last month. Still getting the hang of things, and now dealing with the wonderful “honeymoon phase”. I have a very supportive husband (married a whole year on the 3rd of this month!) so I feel very lucky to have someone by my side, but it’s still scary knowing our marriage is so new, and now we have my diabetes in the mix. Diabetes sucks
Welcome to TuD, and to the club no one wants to join! I was about a month past my 28th b’day when I was dx’d, but that was in 1983 and ohmygod how much better the tools are now for dealing with it. I shouldn’t complain too much, since it was better for me than for people dx’d a few years earlier. There was something resembling a BG testing system that at least didn’t involve test tubes and boiling stuff on your stove–we had these strips you put your blood on and then waited for 'em to change color, which you compared to a little chart on the tube. The “accuracy,” if that’s the word for it, was about ± 50 mg/dl. You could save money by cutting the strips in half the long way and get two for the price of one.
Even worse, to my mind, was the treatment regimen… but without going into that: what regimen are you on? Basal/bolus MDI? Pump? There’s a lot of help to be had here on tips for managing to live a normal life on the various treatments.
Also too: regarding the “honeymoon”: one of the advantages of being dx’d as an adult is that it seems to be more common that you will retain some endogenous insulin production, which is a help in keeping in range, though it still requires a lot of work and attention.
Hello and welcome. I was diagnosed with Type 1 when I was 22. I am not 31 and have been married almost a year. It takes a while to get the hang of things. Just ask lots of questions and look through the forum… there’s TONS of info here to help you.
My husband is wonderful, but I find the main thing is diabetes scares him worse than it does me. Mainly because I know what it feels like, I know what’s going on (unless I’m low and incoherent). He does not know what it feels like so that makes things harder for him. He likes to try to guess what I need which can be frustrating for both of us. Communication is key. I found brining him to some of my Endo appts, having him read articles and posts on here and other websites, and then just general education about me and my experiences was helpful.
Anyways, lots of people are diagnosed as adults. Hang in there… it does get better.
Hi. I was diagnosed as an adult at 36. i only knew that it could be t1 because one of my very good friends at the time had been diagnosed 18 months before me!
It does take some time to get used to doing everything and accepting all of the changes that have to be made. i was angry for quite a while, i have to say. it just seemed so unfair, there i was, just moved to a new city, started a new job, knowing like three people here (and not well) and BOOM, oh hi diabetes. it is never a good time for diabetes.
i think back to those first couple of months and i think, wow, that was pretty scary. i got two days of D education at the local teaching hospital and that was it. i was on my way armed with my lancets and strips and insulin and a piece of paper with carb measurements for different foods. it was good enough to start but i learned so much more information for day to day things on tuD.
you wont believe how much easier it will get, how much better you will be able to deal with everything, how you will just KNOW what to do, how it will become so routine, just another part of you, a part of you that, at times, looms larger than you want it to, but most times just something to take care of.
when i was first diagnosed, i was so strict about food, eating the same thing every day, weighing everything, freaking out and CRYING if i saw a number over 200. any number like that, anything less than perfect control was seen as a personal failure. i really could not accept that sometimes i wasnt going to like the numbers, that i wasnt always going to win the D game. now i accept that a couple of bad numbers are not going to kill me, that i have to LIVE, i have to have that cheesecake once in a while, or that summer ice-cream, or that nyc pizza.
i think what DrBB said about keeping some insulin production when diagnosed as an adult is true for me. as long as i eat reasonably well and exercise i am able to keep things under control most of the time. enjoy your honeymoon, may it be long and stable!
book recommendation to help: the book of better by chuck eitken. really a feel better book. you cant read it without laughing out loud while getting some good advice.
for more D info, more day to day what-to-do stuff: think like a pancreas by gary scheiner.
and yes, diabetes really sucks!
good luck with everything, it only gets easier!
I am a pretty new T1 as well, just diagnosed a few months ago at 47. It took me a couple of months to get the hang of things too, I’m still trying to figure out how to properly bolus for certain foods without rollercoastering (deep dish pizza, I’m talking to you) but now my BG is pretty stable – we’ll see with my a1c test later this month! Diabetes definitely sucks but the Diabetes Online Community is pretty awesome!
As far as experiences:
- dosing might change rapidly during honeymoon
- My diabetes was being managed by my PCP, who I adore and did the initial diagnosis (no T2 misdiagnosis, thank you!), but as a non-expert in diabetes I was missing out on some info, so you might consider an endo referral if you are in the same boat
- At first when I was out in public I would test and inject in private (mostly restroom) but it is really much more convenient and liberating to just do it in public wherever you are
- Mentally/emotionally letting people at work know about my T1D has also been helpful, but be prepared for them to tell you what you shouldn’t eat, suggesting T2 treatment, etc. It can be annoying but they are trying to be helpful!
- I went to a TCOYD conference that happened to be in town, I would especially recommend something like this to new PWDs. It was also the first time I got to hang out in person with other PWDs which is cool, there is an instant connection with other people that get it.
Welcome to our community! Glad you found us right away. I stumbled on TuDiabetes after I’d lived with T1D about 40 years. That was 8 years ago. I’ve learned so much here and made so many friends, it’s my second family.
One big thing I learned here is to try to change the language I use, when talking about and thinking about my d. Instead of “testing” my bg, I “check” my bg. testing implies I am being put under an investigation of quality control, like how good a person or PWD I am. I also try not to refer to my numbers as “good” or “bad”. I try to say “in range” or “out of range” to myself. Instead of feeling like I failed if they are out of range, I try to say “wow, I’m glad I caught that now instead of later”. Before, I used to avoid checking my bg if I could, as it was always an opportunity for me to feel bad about myself. Now I check it whenever I think I need to, or if I feel weird. These changes have led to doing a lot better with control, not to mention how I feel about myself.
Hi there…diagnosed in 09’ at age 45 (misdiagnosed as type 2 initially). My oldest son is also type 1, since he was 12. It’s very easy to get down about this stuff but then I think about him and how long he’s been dealing with it. He’s 31 now. You’ll learn a lot here.
I was diagnosed 3 years ago at age 26, after 11 months of marriage, so very similar situation! My diabetes has been slow onset and I caught it early, so it hasn’t been difficult to manage (yet). Despite that, it was rough on my mental health to get the news. Hang in there!
I was diagnosed 17 years ago at age 50. Misdiagnosed as t2 by a doctor who wouldn’t even do an A1c. Anyway, just learn as much as you can but realize it takes time and you will learn something every day. Nobody has this mastered.
diagnosed at 27 with t1 (6 months ago)
still in the honeymoon phase
just got engaged last week as a matter of fact
I’d say our situations are pretty similar (although I’m a guy)
A few thoughts:
1.) You now have an excuse to buy more purses because now it’s a “medical bag.” My fiancé always carries my diabetes supplies when we go out.
2.) You’re very lucky to have a supportive spouse/significant other, don’t ever forget that. There will be times that you argue over your diabetes. Just remember that he is allowed to be scared and frustrated just like you.
3.) Traveling is not affected- diabetes isn’t a factor in how we plan trips. The only difference is that my bags are a little heavier.
4.) My career has not been affected- I miss 2-4 days a year for my endocrinology appointments (a1c checks mostly). Other than that, I’m just like everyone else.
5.) You can still have kids one day. People who are diagnosed after the age of 25 are at a much lower risk of their children also developing t1 diabetes.
6.) It’s scary because you don’t know the answers. When you’re first diagnosed you have ten million questions but hardly any answers. That’s the scariest thing about diabetes.
7.) Talk with people you care about and talk with other people who know what you’re going through- The time I’ve spent on this forum and others is largely what I blame for why I’ve accepted and managed my diagnosis so well. I talk and read about everything until I find the answers.
8.) Yes it sucks, yes it’s a pain, but it doesn’t have to run your life.
When I was diagnosed I thought it would be the end of my relationship. I felt that it was unfair to bring this to the table. But I was wrong. Turns out, we are supposed to stick together through thick and thin, happiness, sadness and also illness. I have come to value my boyfriend in a new way because when you are already dealing with the diabetes dragon you really don’t want to go it alone! I think that’s actually why people get married, because they want to help each other.
Dx’ed at 45, ten years ago. T1, my pancreas gradually faded away… I went low carb early and think it made dosing easier because all the numbers are smaller and more repeatable. It seems like a lot to take in, but the good news is that thousands - millions - of us have made it through that stage. You will too! One thing at a time.
@jtenneson, here’s a really good post from someone who knows about LADA intimately
it’s great advice imo
Right now I do injections, but my goal is to get a pump.
Thanks for all the responses. The day I was diagnosed I thought my life had ended (I was a little dramatic/emotional), but each day after that got a little better. It’s still hard some days, but reading the replies and knowing how supportive the type 1 community is makes me feel a lot better about everything.
I think common practice these days is to start you on MDI with a sliding scale but if you’ve gotten beyond that into carb counting and determining your insulin-carb and correction ratios, you’ve done most of the work for transitioning to a pump successfully. Not but what I’ve heard from a few people here who just went straight to the pump and winged it. Which seems crazy to me but I guess what doesn’t kill ya makes you strong. Or something. The one thing about it that made me reluctant, and that I’ve found to be true though I’ve come to terms with it, is that my T1 occupies a much bigger mind-share than when I was on MDI–it’s much more flexible but by the same token more complex, and just in the nature of the thing that gives you a lot more stuff to think about.
But it does let you adjust your treatment to fit your life rather than the other way around. I think that’s the single biggest change in the whole system of T1 treatment since I was dx’d. For a very long time it was like joining the military and you were expected to live your life to its rules, not the reverse. Now that we have better tools that has gradually shifted in the other direction.
I was diagnosed almost 5 years ago at 26. The biggest thing for me has been finding a support group so sites like this are the best. Originally I was dx’ed T2 so my honeymoon period was spent believing that exercise, diet, and meds were doing the trick just right and then feeling extremely guilty when that stopped working. Welcome to the club no one wants to be a member of!
They started me off right away counting carbs and using a set insulin to carb ratio. I would get the pump right now if I could. My CDE said I could look into it in three months, however my Endo said insurance companies like to wait a year, but I’m not buying that.
I too was age 27 yrs old when I was dx T1, but that was 47 yrs ago, so I’ve been at it quite some time now In 1969 when I was dx everything was very basic, with just one Lente insulin injection in the morning and remember to eat at regular intervals or else I could be in trouble. Anyway I was dx during a medical check-up, incl urine test, for a new job that I was just about to start, but had not experienced any extreme symptoms (thirst, going to toilet, weight or tireness) so I guess it had not progressed to that stage for me. So the possible trigger was a combination of new job, new location and due to get married in 6 mths time, but you can never be sure.
So it was straight onto insulin, with no hospitalisation etc … in at the deep end whilst living on my own in temporary accommodation. But once living with my new wife 6 mths later, she was very supportive and we learnt as much as possible from the odd leaflet handed out. I was told to eat 140g carbs/day made up of x3 meals of 40g, plus x2 snacks of 10g. So I basically stuck to that for the next 40+ yrs, and although control was variable at times, once A1c testing was introduced in 1980s, it was much easier to see how I was doing. I have records of all A1c readings in last 16 yrs, since 1999, and I was in the 7.5% to 8.5% region for many years, with hypos in early mornings quite often, for some unknown reason, but no complications developed as that control level was acceptable … just.
Anyway, about 4 yrs ago I decided to check out online support groups and learnt SO MUCH that I had no idea about before, such as MDI basal/bolus regimes, insulin-carb ratios & correction factors. So I decided to take all this new information on board and taught myself carb counting & bolus adjust based on ratios, and since then I’ve recorded a steady reduction in A1c from ~7.5%, to 6.9%, to 6.5%, to 6.3%, and last one since using Dexcom CGM in last 4 mths, I broke my record with 6.1% (43) with no more hypos also.
So that shows what you can achieve by educating yourself on all aspects of T1 self-management, which is what I would strongly recommend, and also take on board the latest technology where possible.
Best of luck … Jon (UK)
Indeed sister… indeed…