Nice topic. I first got online in 1996 and I was wildly enamored of everything cyber. I frequented chatrooms, message boards, made “lifetime friends” and even dated from online connections (before it was super common). I was addicted to my new toy. I type very fast and am very verbal as you all know, so it suited me well. I even got in trouble at work for being online too much. (Does that still happen, or have employers resigned themselves to time lost?). Then I got burned out (and yeah, the online dating life for a woman my age left much to be desired). I stopped living on my computer and just used it for e-mail, information and later to teach.
Fast forward to early 2009. I was living in Guatemala. I had been (mis)diagnosed as Type 2 in July 2007 and oral meds worked fine and my numbers were good for 15 months even without changing my carb heavy vegetarian diet. And then they had started to go up and up. I knew I needed insulin, I just didn’t understand why as I’d “heard” it took 10-15 years for “diabetics” to have to go on insulin. My Guatemalan doctor, also assuming this 60 year old gringa was type 2 put me on too high a dose of basal insulin and I was low before meals and still super high after. I didn’t really understand any of this. I’d moved to Guatemala a month after diagnosis and had gotten little education. My ex-boss had given me a 15-year old diabetes book published by Johns Hopkins. I started rereading it looking for clues about experiences like mine. It was way too old to mention LADA but had a chart with the differences between Type 1 and Type 2, in which it mentioned that Type 1’s were usually diagnosed as children, but sometimes as adults. Hmmmm…could I be Type 1? I realized I needed more and updated info and got online. I first found MedHelp where it was mostly newly diagnosed people who knew as little as I did, but someone mentioned LADA and also gave me this website and another one. (I stayed on MedHelp, giving back for that gift, by telling others about TuD until they finally kicked me off for daring to mention a “competing” site!)
On the two new websites, I learned about everything from LADA to carb counting. I realized from what I heard that my hypothesis was correct and I was in fact LADA/Type 1 and by the time I got in to see an endo in Guatemala City I gave her a list of five things I knew made me LADA and she checked off each one and said, yes, you are type 1. (She admitted she’d never heard of LADA). I’ve since stopped going to the other site, except every once in a blue moon and am on TuD all the time (way too much…fortunately I no longer have a job to get in trouble with!)
My oldest friend is an excellent RN whose medical knowledge I’ve always very much valued and always have said “what does this mean, should I worry, should I go to the doctor” and get excellent advice. Her knowledge of diabetes, like many medical professionals is lacking and outdated; her own Type 2 husband is poorly managing his diabetes assisted by his doctors. She thinks I am “obsessed with diabetes”. I probably am, because as you all know, you need to be obsessed to a degree to manage Type 1. My brother is caring but when I told him about getting a pump this highly intelligent man asked if “I feel it when the pump injects me with a needle before I eat”. He too thinks I am obsessed. So I come here.
TuD is one huge family who live all over the U.S. and in how many countries around the world? (I’d love to know that answer). We are both types and all ages, as well as loved ones. We have had diabetes for 30 years and 30 days. We probably work in every occupation you can think of, but most of the time you don’t know what someone does unless you look at their profile, because it doesn’t matter. You might know someone has limited resources because they ask for advice on free supplies, or that they have ample resources as they ask about international travel with diabetes supplies. But aside from that it doesn’t really matter. What we know about each of the 19,000 people in our amazing family is that they know us and we know them. Because we are all struggling with a chronic condition that isn’t going away anytime soon.
When I was first learning to bolus my endo e-mailed me to take “one to three units before meals”. I wrote back asking about I:C ratios because I’d learned it on here and she had left for vacation and her secretary couldn’t figure how to translate I:C ratio into Spanish. I came on here and posted, Gerri answered and explained how to figure ratios. I was so overwhelmed with everything her words made no sense. I went to bed and the next day got up and found her post and followed it to a “t” . I got up out of bed at 2AM my first night with my pump because the damn tubing was wrapped around me and my cat and I had no clue how to sleep with a pump attached to me. I turned my computer on, posted on here and within 15 minutes I had an excellent suggestion (thanks, Marti!). Information, there is lots of here. Now, two + years in I don’t agree with it all, and I’m sure people don’t always agree with me. But we usually disagree nicely, and go ahead and “take what you need and leave the rest”. But there is way more than information and experience here. There is caring. When someone is freaking out, people seem instinctively to know the right combination of comfort and data they need. When someone is new and ask a question that’s been asked a thousand times before, someone always takes the time to answer the 1,001st. When someone comes on announcing a website they’ve just discovered that has the cure for diabetes and all you have to do is stop taking insulin eat an ounce a day of eye of newt, nobody laughs, but they gently encourage the person not to throw out the insulin vial just yet. If you called your doctor’s office at 3AM you’d get a machine or a service. If and when the doctor called back you’d be told to make an appointment. Sometimes at the appointment you will be told to “eat more carbs, you’re starving” or “take these two meds in addition to the five you already take”. If you’re lucky, you have a doctor who respects how much you know and how hard you work, and is willing to work with you. Then, if you are lucky and have good insurance you pay your co-pay and go home. Here, at 3AM you get an answer from someone or several someones who has been exactly where you are at, respects you and supports you in whatever you need, whether it’s picking yourself up after 10 years of ignoring your diabetes or adjusting to your first pump. And they don’t charge you or your insurance a dime.
