For you guys either not yet hooked up with the DOC or with no “need” of it, the DOC stand for Diabetic Online Community.
I didn’t know such a thing existed for a long time.
Growing up with diabetes, I never had a support group or a peer group of any sort. My parents didn’t “do” diabetes conferences or fairs. They sent me to a diabetes camp the first summer I was diagnosed and I was so flippin’ homesick, I couldn’t have learned anything anyway. I heard a year or two later that this particular camp had not been well managed that year. That might explain why the counselors could be easily observed from our cabins after lights-out piled up on a picnic table smoking and drinking. Yeah, prolly.
So other than meeting a new friend named Erin that I know absolutely nothing else about (so I can’t find her now) and doing a really fun obstacle course one day, all I got from that experience was a severe resistance to ever attending any other such thing. Ever.
I know there are great diabetes camps today, but I think the biggest problem with sending me was that I didn’t know enough about the disease, I was newly diagnosed and I was severely homesick even when staying at a friend’s 20 minutes from my house. When they drove me 4 hours away to this camp, I was just miserable and cried a lot. Not really a great learning environment.
Then like I said, my parents weren’t really “diabetes” parents. By the time I had been diagnosed a year, my little sister had been diagnosed with epilepsy, so they kinda had their plates full. Mostly my poor mom, who dealt the most with all our medical stuff and doctors and calls from school because no one knew how to care for us. After I became a mom myself, I looked back in amazement that my little mama survived those years! I know she had to pick me up from school at least once almost every week. It must have been maddening for her. When my sister reached those hormonal pre-teen years, she began to have a lot more problems with seizures and so hopefully, I was more able to tend to diabetes myself by then.
[Diabetes Hands Foundation is an amazing resource for diabetes information! They were the main sponsors or creators of MasterLab that I attended in Orlando a couple weeks ago!]
Anyway, as you can see, my home wasn’t solely focused on my disease and honestly, my parents actually felt the diabetes was much less serious than my sister’s epilepsy. I overheard my dad once telling someone that since they knew what was wrong with me (a non-functioning pancreas, is what I assume he meant) but they didn’t know what caused my sis to have seizures, dealing with her medical stuff was harder. The general sense of what he said, as I recall it now, hearing it as a child, was that they didn’t have to worry much about me. There were treatments and ways to manage diabetes. And while that’s really true for the most part, it set up a really tense dynamic in our home where I was expected to do more, take care of more, be more responsible, and most of the time even be responsible for what she did as well as for myself.
[I was often given the idea (or told outright) that I was lazy so now, I sorta AM pretty lazy about a lot of things. The more tired I am, the less I care about getting other things done. Is this a result from childhood or more an actual tendency? I dunno..]
That’s a whole ‘nother story that doesn’t have anything (sorta) to do with this post, but let’s just say that diabetes was “my thing” so much so that once when I had my first extreme low when I was a sophomore in high school, my mother didn’t know how to use my AccuCheck meter and couldn’t test my sugar. She had no clue I was low and I wasn’t able to speak…words would form in my head, but never came out my mouth the same way, so I couldn’t communicate and she thought I was “putting on”, so I got bawled out during the whole episode. I would be chewed out at the endo appointments by them because my A1c wasn’t acceptable, then scolded by my mom on the way home for not keeping better logs. I DESPISED going to the endo!
[this is a hashtag used to help let the world know what it’s really like to live with diabetes]
We didn’t really change how we ate at home. The most glaring change I recall from diagnosis was that my usual morning meal of cheerios with about 2 tablespoons of sugar and milk with Nestle Quik was taken away. I don’t know what it was replaced with…I seriously can’t recall, but I do remember how much I loved that sweet grit that would be left in the bottom of the bowl and how much I enjoyed trying to scoop it all out with my spoon before turning up the bowl to drain it. I still love it even though we seldom have cereal in the house today, IF WE DO, and IF I GO LOW, that is what I’ll fix myself. The cow’s milk is replaced with almond milk today since dairy makes me so sick and it probably won’t be Cheerios, but I’ll still load it up with a couple heaping spoons of sugar and smile while I scoop that gritty sweetness out of the milk once the cereal’s gone. I know, gross, right? Ha ha! Too bad. I can’t help it. I still love it.
[Glu is a great DOC you should check out. Google them!]
Don’t think my mom was really negligent and didn’t feed us properly, the sugary Cheerios was my own doing. And honestly, I’m pretty sure I snuck the extra sugar into the bowl when Mom wasn’t looking. She just didn’t really try to change the whole family’s diet, which I guess was fair, but it sure didn’t feel fair when it came time for things like Halloween and Christmas and I got handed some nasty sugar-free crapola while my sister got the good stuff, ya know? Sometime I’ll hafta tell you about when I was maybe 9 or 10 and my aunt who, after offering my sister a bowl of M&M’s, looked at me and said, “You can’t have any because of your sugar,” and felt that took care of things. Sheesh!!
[BeyondType1 now has their own app, which I have been burning up lately! It lets you post your “D-identity” (whether you’re a diabetic or mom, sibling, etc of a PWD) and where you live so you can find Ds close to you!]
Any “new” thing or technology that we were offered or told about was pretty much handed to me to figure out, which lead to even more things that neither of them knew how to use or read or utilize to help me. Diabetes was solely and completely MINE. Diet-wise, control- or log-wise, whatever…it was mine and I wonder now how in the world I stayed out of the hospital as a kid!
[Did you know we have our own day? Actually, November has been deemed “Diabetes Awareness Month”…not that I’m super-impressed with that. So far it hasn’t really helped tremendously to get proper information to the masses, but there’s always hope, right?]
The only other time I was in the hospital after my initial diagnosis was when I was a junior in high school. We switched to a new endocrinologist who felt I really needed to be admitted for a few days. Looking back, I see this was his way of trying to teach me how to manage things better. It wasn’t that I was horribly ill or in DKA, it was more an attempt to help me understand the disease and how to manage it. The doc and the hospital were in Lexington, which is about 100 miles from home, so I was left there and didn’t see my family except for maybe once until they released me about a week later. However, my new boyfriend did come to see me a couple times. big smile Bless his heart, even that stuff didn’t scare him off because he still married me about a year and a half later.
[I always wish I had something like this to hand to people who say, “Oh, I don’t know how you do that! I could never give myself a shot!” Gag! If your only other alternative was death, I guarantee you could! rolls eyes]
Okay so back to how much I’ve come to love the DOC! There are SO many ways to connect these days. Like I said, it was awhile after I got online back in the day when having home internet was a new thing, before I ever realized there was any such thing as a community of other diabetics!
Once I found these mythical people, I was amazed to read about how people communicated and how they spoke of the things that had always been “weird” in my world, but were common in the world of the DOC. Other people got those hard, sensitive, bulky areas from years of pork and beef insulins. Other people had dealt with atrophy from those, too. I’d never EVER met anyone who had a clue what that stuff was! I soon learned I wasn’t a bad person for only changing my lancets when they started to hurt my fingers. I wasn’t a ‘bad diabetic’ just because I had been labeled “brittle” by the endos and other people dealt with being “brittle” as well. It was pretty amazing to find out I wasn’t alone. Even though I KNEW I wasn’t, when you don’t have contact, it still seems as though you are and for all practical purposes, you really ARE alone when no one in your sphere understands you as well as another PWD.
[The DOC spans all media and areas of the net these days. There are tons of apps from offering support to helping keep better records to calculating carb ratios! Do some research and you’ll soon have plenty to keep you busy!]
So really, these days? There’s no reason to feel alone in dealing with diabetes. The DOC has expanded and become invaluable to most all of us PWDs. I’ve only ever seen one person say connecting with other Ds hasn’t helped them. I agree that it makes me focus more on diabetes, but that’s never been a bad thing. The most important aspect of dealing with diabetes or any other chronic disease (or just LIFE, for that matter!) is having a positive attitude and knowing there’s always hope.
[Don’t get all offended! I think this is kinda funny. I’m pretty sure this comes from Anthony’s group called “Duck Fiabetes”. You might as well, laugh, right? You can Google this one, too.]
If you lose that, you’ve kinda lost the battle anyhow, which is why we need each other! What’s YOUR experience with the DOC been like? How did you find it and how long have you been a part of it? What do you feel it’s done for you and your management of diabetes? Do you have suggestions to improve the DOC?? What other diabetes blogs do you read?
Let’s talk! Diabetes support doesn’t have to (nor should it!) only come from other diabetics. That’s what I try to do here…educate everyone about living with diabetes! The more we understand, the better off we will ALL be!