Family Who should be educated and just aren't


(Jeanne) #1

So I have this large chunk of family that I don’t really know because they are on my father’s side and he wasn’t part if my life for a very long time. Well I just got brave and called my favorite of his siblings, so far anyway, like I said I barely know them. So I call her and told her about my diagnosis and after a while she told me about her daughter getting type 1… She proudly proclaimed that her daughter was diagnosed at 24 and that was the oldest possible age people could get type 1 diabetes. I mean really! These people. So now that’s my father, aunt, uncle, and two cousins that are type one that I know of and they still have no clue about it. They just listen to their doctors, most live in a town with only 7000 people… 3 of them are missing toes and I’m just so frustrated. How can they really know so little about this? I’m scared that I’ll end up like them but more I’m just so mad that they could be so clueless. I worry the children on that side of the family. My only comfort in that respect is that it seem hard to miss in children although possible. Currently I spend a lot of my day on the internet trying to learn. I read anything from ada that I can including hard to understand trials which I have to translate from doctor to English as best I can. I watch Grey’s Anatomy (not for science lol) and they say a phrase often which I think perfectly describes how doctors think. They say ‘when you hear hoofbeats think horses not zebras’. Well im a zebra, and im not just your regular zebra my stripes are pink and black and I’m proud of it. As a newly diagnosed 32 year old type 1 diabetic everyone thinks they know different, even other type ones. But that doesn’t change the color if my stripes and I’m proud of them. Be proud my perfect zebras, screw the clueless.


(Dennis J. Dacey, PWD) #2

Jeanne @JeanneMS , I’m smiling with you while reading your last line - yeah I admire your Pink & Black stripes.
I also admire your concern for the family you don’t know - especially for the children who if they develop T1D, or T1D develope in them, will not receive proper, timely and proper diagnosis and education. your ambition reading everything about diabetes is commendable - but research the writer and publisher too; during my 60+ years of living with T1 I’ve been offered so many “cures” that I don’t have enough fingers and toes to help me count.

Now the real reason I began this reply: do not be scared that you “… will end up like them”, you will not! From what I have “heard you say” you are much too intelligent for that too happen; you have made up your mind to care for yourself and live a wonderful life. Of course I can’t predict the future but if you have your way you will be great.


(Jeanne) #3

Hi @Dennis thank you so much for your reply. The first time I read this I honestly cried a little. I have to admit it’s taken a long time for me to reply because as a very honest person sometimes I can be misunderstood. But I’ve decided not to try to change myself to fit the situation and just stick by my beliefs and be completely honest because I believe only the best thing can result. Okay so here it is.
Before this reply I thought of you as a cantankerous curmudgeon bent on cyber bullying me out of this forum. I saw your use of bolds, caps, and exclamation points as aggressive and I started to take it personal after I saw the way you were so great with other people. So it made it really hard for me to reply when you ended up making me feel like someone actually understands me.
You used your bold to “yell” at me out of my mindset that this is out of my control and I even saw the first one as more of a highlight of what is important. See this reply encouraged me and made me feel heard which I think you’ve done for a lot of people. Most importantly it makes me feel like I’m not alone and I get more and more alone everyday. So thank you @Dennis. Thank you for every person who you have been there for and thank you so much from me. I was so worried about what you would say, but you’ve shown me the kindness of your heart which is exactly what I needed. You are a true inspiration, and although I’ll still faceroll whenever I read your stories of walking miles in the snow (as the phrase gos) I appreciate you being here. You are awesome and I hope you never stop inspiring and helping people. I also hope this didn’t come off the wrong way. Fingers crossed lol


(Dennis J. Dacey, PWD) #4

Dear @JeanneMS you are loved and appreciated here and I’d never try to bully you out of this site; you have written many posts [yes, I’ve read every one of them] and I think I understand well what you are attempting to say. You are offering lots of encouragement to other members - including me. Jeanne, I apologize to you if I have hurt you in any way - and please do feel free to message me, email me, whenever I inflict any pain or use inappropriate wording.

Possibly I misused the bold and uppercase letters - my intent especially in last night’s post my BOLD was praising you for your efforts to help your family and others, and praise you for your effort to give yourself the best possible tools for success with TypeOne - education and motivation. We need to be our own “physicians” because as you know we may see an endocrinologist for only 20 minutes every few months so that leaves another half million minutes each year where we must continuously administer to ourselves.

Admittedly, I do come across a little rough at times - I should watch that but I have a feeling that many people do understand why. Just yesterday morning as I walked into a TypeOne Nation Summit, I was embraced by a few people who recognized me who wanted to talk and share ideas - it was a wonderful day.


(Jeanne) #5

See you’re awesome @Dennis. I want to write you a big reply but all I can think about is looking up the TypeOne Nation Summit. There isn’t a walk in my area until April. Also I think my honeymoon is over. I was always around 90-100 and now im usually 120-130 bg without eating. I’ll see my doctor soon and figure this out but im a little worried. There’s so many reasons it could be higher. What are the reasons that you know of? Thanks :slight_smile:


(Dennis J. Dacey, PWD) #6

Awwwwwww, thank you @JeanneMS.
summits can be found under the “Events” tab at the top of this page along with walks and other events; the walk in my area is also in April, the 7th. I’ve already implemented one of the tips a speaker recommended yesterday - yep. I’m still learning techniques.

I wish that my frequent BG checks were all in the 120 - 130 range. You will have a lot of learning as you exit the honeymoon phase and everything will get topsy-turvy so try not to get too upset by just knowing you are “normal” and just like most of us here.

I’d need to ask a whole bunch of questions before I’d guess why your BG is now higher even without eating - for me it sometimes is activity before breakfast and before I take a breakfast bolus. Like today, I was at 106 at 6:30 AM, went out without eating or taking insulin and when I came home for breakfast at about 9:00 AM I was at 127 - kind of normal and that tells me that my body doesn’t produce its own insulin .


(Dennis J. Dacey, PWD) #7

A post was split to a new topic: Managing Food, Activity & Insulin


(Gmkennedy) #8

Hi Jeanne,

Thanks for your open and honest post! I love your spunk! Reading this made me think of our family diabetes and I wanted to share something with you. I don’t know what tests they did when you were diagnosed, but most of our family who were diagnosed as adults were not given any other testing. However, our grandson, who we are raising, was diagnosed at 12 and this spurred antibody testing. It was negative. Because we have a long and strong family history they suspected a genetic type. So they tested him - mostly because he was young and not showing typical T1D antibodies. Well, the family disease was found! We have a rare genetic type called MODY 12 where one copy of the insulin or INS gene is faulty and does not make insulin but the good copy does. It is hard to manage and we tend to have a longer honeymoon without insulin. Although the younger ones don’t tend to do that. Also, while most will have it show in their 20s, it can happen both younger and older. The gene is dominant so every child of someone with it has a 50/50 shot at getting it. Anyway, it solved why so many in the family have diabetes. Our genetics counselor said lots of folks likely have a genetic form, especially if they have multiple family members in multiple generations, and just have never been tested. They have now identified at least 14 genetic types and treatment for each can be different as it depends on what the gene is doing. One can even be cured if caught in the early stages! So now you know even more! You could ask about testing. Let me know if you want more info or some of the articles we were given. Oh, and I have worked in healthcare a long time. Typical T1D can strike at any age! And I too love pink and black! :slightly_smiling_face:


(Jeanne) #9

Hi @gmkennedy and thanks for your response! I would love to know exactly what gene is responsible for all this but honestly that idea seems daunting right now. I think mainly because I have no idea what that would entail. So yes, I definitely would love any articles you can link but also maybe you could tell me if I would need to convince my other family members to get tested too in order to find the gene? I also have no idea where I could get that done. The whole thing just brings up a lot of questions for me. I really appreciate your response and I’m glad to have another pink and black lover on here. :slight_smile:


(jjmnav) #10

I wish 24 was the oldest possible age people could get type 1 diabetes, then I wouldn’t have been diagnosed at age of 30. When doctor told me I had Juvenile Diabetes I had to ask him if he had the right person as I certainly was not Juvenile.


(Jeanne) #11

Me too @jjmnav. I’m certainly not a juvenile.