Hello, my name is William Hartwell and I’ve been diagnosed with T1D since December 27th, 2022. Type-1 Diabetes is something that can’t be cured, but can be managed for the moment. When I heard that there’s a community where you can ask questions and create posts, I wanted to share my story and see other people’s stories, as well as how they cope with it. I also want to know what type-1 diabetes taught you as you were managing it over time. Hope we can support each other, than just ourselves.
@Willyiscool02 Hi Will, and Welcome to the JDRF TypeOneNation Community Forum!
I’ll begin the conversation by trying to respond to the questions you pose in your last sentence. Diabetes has taught me how to really live life, to be strong both physically and especially mentally, to fnd for myself while being generous with my time and talents, and patient and a source of encouragement for others - especially those recently diagnosed with diagnosed with diabetes, like you. Diabetes management technique has changed considerably over time and presently some of the recently discovered tools [the last 30 years, or so] is bringing the ability to survive this incurable condition and give us hope for living an almost “normal” life. Your last few words, "support each other"say much - the advancement in medicines and tools is moving so quickly that one can do this alone. We must work together, learning and sharing both what has worked for us and what hasn’t been successful. And that is one of the reasons for this Forum – support and sharing.
A little bit about my journey with diabetes; I’ve had diabetes since 1956, back in the days when a simple blood sugar test in a hospital took days to get a reading and after leaving college and on my own, that simple BS test cost a day’s wage - minimum wage was $0.65 per hour. True, when diagnosed doctors predicted I might live for 10 - 15 years but I was lucky. My “feel good” part of diabetes is my contribution to others with diabetes; from 1966 to 2000 I served by a diabetes research clinic where I volunteered my body for several projects, some very successful which are now being used by millions of people with diabetes around the world making life wonderful for living. In a word. diabetes will not slow me down, but rather propel me to succeed.
well hi @Willyiscool02 welcome to the club that no one wants to be in! My story starts in 1979, and it sounds like everyone else’s: I felt real bad, exhausted, frequent urination, losing weight, doctor said I was lucky or I could have died, super high blood sugar… all really very common parts on what got us to here. Managing it was not a happy story, I got angry and resentful and didn’t manage very well. at the time there weren’t any blood sugar meters at home because they weren’t invented yet… but I did have short sharp disposable needles for my animal based insulin (cow and pig pancreases). I decided that I deserved to feel better in the late 1900’s (it sounds funnier when I say it that way) and I have a pump, a cgm, I now use modern rapid rDNA based human insulin, and I think I am doing a pretty good job these last 20 years, compared with the first 20 years I had T1. Welcome! And I hope you enjoy our forum.
Hi @Willyiscool02 and welcome to type one nation forum! It was 2017 when i was diagnosed with a disease which no one in my family understood that i will be on meds for the rest of my life. On the day of diagnosis i wasn’t in DKA i just went to the hospital and admitted for one week i was discharged with rapid insulin without being given enough information about meds like am gonna use it for life,potential side effects,and other necessary informations! My parents asked me if i have finished the dose! I started studying online about diabetes and started to get idea on what was going through! The next year i went to medical school which boosted my understanding but i didnt let anyone know that i am diabetic.i found that forum that is super suportive and i met badass in this forum who has made it to their 70’s and here is where i said i can do it.
Diabetes has taught me to be my only C.E.O, and since then i have realised that i want to be better than anyone else!( i used to challenge people in the college workouts,academic )and all other shits i was the best! We all need support,we are not meant to do it all by ourself but when you cant find it be your only support💪
Both sorry to hear but glad you found a good group to commiserate, congratulate, and celebrate with, not to mention a source of good information and treatment options from practical experience! Didn’t read your age, but I personally got mis-dx’d at 58 as T2, stayed that way for 8 years until drugs stopped working altogether, then correctly dx’d at 66 as T1 LADA. I’ve gone thru the several stages of grief described by others, sometimes feel I’m making good progress (use a Dash pod pump, G6 CGM, and DIY Loop to coordinate everything), sometimes I get enraged or depressed with persistent highs that seemingly refuse to acknowledge correction boluses or the rare G6 that keeps saying I’m low when I’m not. The fact is talking and gathering info from others here and similar groups is cathartic mentally and that seems to translate well to the physical things. So, ask questions, get answer’s running the spectrum, and inform yourself, then make your decisions of what’s best for you! Welcome to the group!
Welcome @Willyiscool02! I’m similar to you as being diagnosed as adult onset T1D early this year. It’s been a large effort to learn about this disease so I can make informed decisions. Have learned a ton from everyone on this board (will continue to do so) and hope you do as well.
Hi! Welcome to the forum!
Ive had T1D for going on 4years. Diabetes was my 13th birthday present. Pre diagnosis I was exhausted, my grades plummeted, and I could walk to the bathroom with my eyes closed. I was so happy and relieved to have a diagnosis.
I was diagnosed a few weeks before COVID, which was awesome timing for me since it gave me almost a year to learn how to carb count, treat lows/highs/ketones/etc without the added stress of “normal” everyday life.
I’ve done normal teenage girl things like shop til you drop, sleepovers, baking cookies, attending homecoming, taking AP classes, etc.
My family also spent a year living and sailing on our sailboat- I learned how to carb count for crazy food, handle bgs during hikes, swims, and other activities, and night shifts (yes I got up at 3 am and ate a dozen Oreos while keeping watch for freighters on the radar and trimming the sails when we went on passages). My parents have never given me the option to not come along on all the craziness, and I think this trial-by-fire way of learning to live with T1D has actually made it easier for me because it’s forced me to be flexible, try new things (even if my BG doesn’t like it), and that while I can’t do literally EVERYTHING with diabetes, I can do ALMOST everything. I’ve also learned to bring x2 the amount of low snacks I think I need when my parents pull us out the door!
Our latest adventure? Moving overseas. I’m currently navigating a new school system, learning how to advocate for myself without a 504 plan, re-explaining diabetes to new friends, learning how to manage my bgs when a bike is my main form of transportation, and transferring from milligrams per deciliter to millimoles per liter! 100 in American = 5.5 almost everywhere else. My CGM number has never startled me so often.
Bouncing around so much has made life lonely, but my siblings and I have spotted a pump or CGM in almost every country we’ve visited. You are not the only one, wherever you are.
By the way, that was my highlight reel!
I’ve had bad days. Hard days. Days when I just sit there and thing “poor me”. Diabetes is not nice. That homecoming football game? BG spiked to 342. I’m procrastinating doing makeup schoolwork for a day I missed because of my blood sugars. Just saying, if you type “funny things” into the search bar of this forum you’ll get some absolutely hilarious results. Chocolate, insulin, funny diabetes memes, and 10 hours of sleep usually go a long way.
Yikes that’s long.
@6yGodsGr Thanks for the perspective! We’re at opposite ends of the age spectrum, you’re a bit older, but gives me a bit of perspective on what my daughter may experienced growing up abroad (Turkey, England with us, then Germany on her own when she was in college); though I’m the T1, vice her. Sounds like you’ve managed well, despite the ups and downs. Please share your perspective freely on other topics, your view will help us “old folks” working with our own kids of various ages…
Wow that is incredibly inspiring to hear about all the living youre doing “outside of diabetes” so to speak. Like your not submitting to be such a slave to it. I think thats wonderful & that you must be some kind of fearless warrior. Im Mom of a 10 year old boy who was diagnosed T1D in September 2022. We’re still struggling of course. Today is the first day ive been in this forum, but already i know my Son needs to join me here & interact with people like you, with insights like yours, & who can relate to him in a way that none of us in his very strong support system will ever be able to. I guess i just mean thank you for sharing, & being fearless & i hope you feel as strong as your post shows you to be!
@tyborg320 I do appreciate you joining the community and you can even ask questions or concerns about anything related to diabetes on here. Hope your son is doing ok and I know he’ll get through this because everybody struggles at first but begins to adapt to the new normal, just like I did.
Welcome to the club
Hang in there, the first year is whiplash. After that it doesn’t necessarily get easier but you get a routine, you figure things out so they aren’t as difficult. You find a new normal. If you are able to, I’d definitely recommend getting a CGM. It’s amazing and super helpful tool, especially if you’ve got a kid you’re trying to keep track of.
You should talk to your local endo’s office and see if they have get togethers for kids and parents with T1D. There’s also organizations such as Cildren With Diabetes that host conferences (and a yearly invasion of Disney world), JDRF has local chapters, and I’m sure there’s more organizations out there as well! As awesome as the DOC is, it’s also nice to see people in person too!
Welcome to the forum @Willyiscool02 !. This year is my 60th living with Type1 and there have been a lot of advancements in understanding, tools and medications to make our lives easier if not easy. I highly recommend you check out the book Think Like a Pancreas by Gary Scheiner. He has Type1 diabetes and works in the field so has a unique personal perspective that is particularly helpful. I think the first edition was published in 2012 but I only discovered it (a more recent version) a couple of years ago - and as happens with diabetes I learned some new things even after living with it for so long. You might find the older technology and methods interesting and even amusing (that’s all I’m going to say😊).
As @6yGodsGr shared, you’ll find a routine and figure things out, which comes from learning your personal responses.
Sometimes your numbers will go places you don’t want them to: don’t beat yourself up, but try to figure out what happened and learn to adjust. It’s a steep curve as you learn about the illness called diabetes and how to adjust to/love with it; but eventually it will come more naturally to you.
Wishing you all the best!