Howdy everyone. I was just browsing reddit and saw an ad about T1D. It just struck me to visit the site and see if i can volunteer.
I was diagnosed with T1D in 2000. Absolutely zero family history, I am a mutant. The tale of my diagnoses is laughable. I’m sure several of you are familiar with this beginning. I was twelve, started to pee a lot. Lost a ton of weight. It wasn’t that bad up until i started to wet the bed. It happened on and off for about a week before my parents took me to a hospital. They listened to the symptoms and ran my bloodwork but couldn’t find anything wrong with me. I forever advise anyone i know to avoid going to that hospital. Luckily i had a GP appointment a few days later. My dad tells him what’s been happening. “Sounds like diabetes”. He nails it second after the words leave my dad’s mouth. My mother rushes me to McLeod hospital for juvenile diabetes checks and I’m officially diagnosed.
My relationship with diabetes has always been a problem for me. Once i was diagnosed my mother became extremely overbearing. Every high blood on my meter was her grilling me to find out what i ate. Going to my appointments to see my doctor where she and my mother reviewed my numbers was nerve-racking. It lead me to hate my disease and feel betrayed by my own body. So that developed into incredibly poor eating habits and done of the issues i now face.
I don’t blame my parents for any of it. I wish they had handled it better but it’s in the past. I want to advocate to families dealing with this too make sure they don’t make these same mistakes. That this disease is permanent and treating it like a demon is the worst way to go about it. You have to learn to live with it. Or you’ll end up like me. I have neuropathy in both feet and I’ve had to get laser surgery done in both of my eyes. I’m lucky beyond words having the care that’s available to me now, but for a long time i didn’t.
I hope i can help someone out here.
Welcome on in!
I was also diagnosed at 12. Also the first in my family to have T1D, although we do have a history of T2D. The latter is the reason my mom was able to correctly diagnose mine fairly early. She was already familiar with the symptoms, and what to do, because her dad was T2.
I’m sorry your parents treated it like that. I do wish there was more education on the matter, for the general public and for families with a diagnosed member specifically.
It’s good you finally got good care and have yourself on track. I hope you can help use what you’ve learned to help others avoid the same pitfalls. That’s the best any of us can do.
@maxbattleaxe Welcome Alexander to the JDRF TypeOneNation Community Forum.
Thank you for sharing your adventure during your first 24 years with this mysterious condition and Congratulations for now being in a position to assist other PwD. Fortunately, I have very little peripheral neuropathy in my feet, but I have been affected by two other forms of neuropathy related to long-term diabetes; in 1966 after being told I’d be totally blind from my retinopathy I volunteered for a LASER experiment - now after having progressed through at least 4 types of LASER beams I still have “good” vision.
I’ve been very fortunate to have been in “the right place at the right time” for several diabetes developments for which I offered my body, and benefited immensely so now, like you, I give back.
To begin, or explore, being an Advocate for diabetes information, I suggest that you begin with the to BIG players in the field - the JDRF [jdrf.org] and the American Diabetes Association [diabetes.org]. With November being Diabetes Awareness Month, each day I’ve received email invitations from both of these organizations. If you check in with a JDRF Chapter you will find a community of people who are Advocating, and many Events where you may volunteer. Look at some iof the diabetes happenings around you: North Carolina JDRF Diabetes Chapter Support
My recent advocacy has been at this level where I’ve been called upon as a speaker to share my story, as a resource for physicians. In the past I served as volunteer story editor for the ADA Diabetes Forecast magazine. Introduce yourself.
hello @maxbattleaxe and Welcome. good advice above so I’ll only add that newcomers log in to this forum all the time (just like you did) and so you can share your experiences right here. Always looking for and warmly welcome more points of view.
Hi. I’m a parent of 11 yr old T1D diagnosed 6 months ago. I was alone with my son through all of his stay in PICU and it was hard on me but I still remember him saying “Don’t worry. It’s going to be ok”. I didn’t know much about diabetes much less about T1. This is a hard condition. First couple months I was frustrated if his numbers were not in range and tried to get a logical explanation about it. I work in technology so I’m used to get the same result from determined parameters. Not here. Moving forward I’m getting better at understanding it but more about living with it but all help is greatly appreciated because I know we still have a lot to learn. I’m grateful to hear so many of you living great long lives and that gives me high hope in our future.
Thank you for sharing you experience and to understand that we as parents make mistakes too. I am happy to know that you are getting the care you need. Is you name Alexander? Just curious because my son’s middle is Alexander.
Yep. Alexander is my first name. But my nickname is Max.
I was diagnosed just before my fourth birthday. Like you, I am the one and only T1 in my entire extended family (both father’s and mother’s side). My mother was fairly overbearing on me growing up in terms of my diabetes care, but somehow that molded me into the adult I became. I have been rather successful managing this deal day-in, day-out. Even though I resented my mother for many years in my young adulthood, there’s no denying that her persistence gave me the tools that I continue to use to live with this.
Thank you for sharing you story. If you want to help families and those newly diagnosed, you might consider applying to be a cyber volunteer with the JDRF Online Diabetes Support Team. The cyber volunteers help answer questions folks submit to JDRF. I’ve pasted a couple links below. The application form includes a list of topics you can choose so the moderators know what your experience covers and which letters to send your way. And they’ll probably have you write a few practice letters before sending you actual requests.
Volunteer sign up form: Sign Up to Volunteer for JDRF & the T1D Community
Question submission form: Contact JDRF Online Diabetes Support Team
I applied awhile ago
Never got word back
That’s frustrating; I’m sorry to hear that. I think they’re making a few changes to the program right now, so maybe the moderators are a bit swamped.