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May 25th, 2012
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If you spend any time around the diabetes social media advocacy (#dsma) community on Twitter, you will see references to #unicorns in general, and "glitter-farting unicorns" (GFUs) in particular. The unicorns seem to have sprung fully-grown from Kerri's vision of cockeyed optimism, and it is said that their flatus can cure even the most stubborn case of type 1 diabetes.

 

Obviously, GFUs are part of the Diabetes Online Communitiy's myth and legend, and may even be responsible for Halle Berry's miraculous "recovery" (come on, can't you see her dressed in a skinsuit and narwhal-horn-shaped headdress?) Their pull is powerful, and talismanic unicorn mascots have been popping up all over the DOC.

 

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While the title of this post is a play on the French "Poisson d'Avril" ("April Fools" is called "April Fish"), there's nothing funny about it.

 

We've heard about folk stealing one or more of Lance Armstrong's bikes, but a whole team's bicycles -- and not just that, but also their spares, parts, and tools?

 

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During the Diabetes Social Media Advocacy (#dsma) session on Twitter last Wednesday night, a lot of the discussion focused on Endocrinologists.  There were lots of great questions, and I enjoyed reading all the responses.

 

It soon dawned on me that there was a big difference between myself and many of the participants, and that being that I don't have an Endocrinologist.  I only have a Primary Care Physician/Provider (PCP) who helps manage the treatment of my type 2 diabetes.

 

So, just being curious, I asked the question: "Is it weird to not have an endo, and have everything managed through a PCP?"

 

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Every November, those of us in the diabetes community bewail the "invisibility" of our condition, our passion, our advocacy over the remaining eleven months of the year. One of our ongoing gripes is that -- unlike breast cancer's pink ribbon, the red ribbon of AIDS awareness, Livestrong's iconic yellow wristband, or the double-cross of the American Lung Association -- there is no single, universally-recognized symbol or color representing diabetes.

 

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As an informed person with diabetes and an active member of several online diabetes communities, it's important for me to "get out into the real world" and make connections with other people with diabetes and with people and associations whose purpose is to support us medically, psychologically, and socially. In addition to real-life meet-ups with members of my various diabetes online networks, I go to health fairs and community events to make contact, inquire about the state of diabetes-care support and diabetes advocacy programs, and have even given a presentation about how diabetes online communities positively effect the lives and health levels of people living with all types of diabetes. 

 

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For several months, a bunch of us have taken part in Wednesday night Diabetes Social Media Advocacy (#dsma) chats on Twitter. Run by Cherise Shockley, these sessions are about an hour long and cover a number of predesignated topics ranging from support groups to diabetes-related conferences to relationships to insurance issues. A week ago this past Wednesday, talk centered around the glycosylated hemoglobin (HbA1c) test: how important it is (or should be) in determining our treatment, how accurate it is as a measure of our diabetes control, whether or not we consider current best-practice A1c goals to be realistic or not (and why), and what sort of self-treatment we use to achieve (or try to achieve) those goals.

 

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I'm an advocate for healthcare reform. I think our country desperately needs a change in how we manage both preventive and continued care. Insurance companies can often make illness much more stressful than necessary with their copays, denied coverage, and stringent rules.

 

I've been blessed with pretty decent insurance thanks to my father's previous job. I've almost always been able to see the doctors that I want to. I lucked into a no referral clinic that allows me to see any type of doctor at my own discretion. No pink referral slips to get me into the OBGYNs' or cardiologists' doors.

 

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Every year, the "blue versus red" argument comes up as diabetes bloggers and patient advocates discuss the relative merits of the American Diabetes Association, the Juvenile Diabetes Research Foundation, the Diabetes Research Institute, the International Diabetes Foundation, and World Diabetes Day. This week, however, the color of diabetes is pink.

 

Diabetes UK pink.

 

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Since I missed this week's Diabetes Social Media Advocacy #dsma chat, I'm addressing this week's questions here. The topic was disclosure — who (and what institutions) do you let know you have diabetes, and who (or where) do you choose to keep in the dark.

 

1. To disclose or not disclose: do(es) your employer/school/friends know you have diabetes? Why or why not?

The company which employs me does not know that I have diabetes; several people at work (including my supervisors) do. There is neither place nor reason to mention diabetes (or any disability) on the job application — I believe it's actually illegal in the US to inquire before hiring — and since hiring/firing decisions are made at the store level, accommodations must be discussed and/or made at that level, rather than the corporate level.

 

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Diabetes is a marathon, not a sprint.

 

From the time we are diagnosed until the moment of our death, we are running a race against skyrocketing and plummeting blood sugars, heart disease, kidney failure, retinopathy, neuropathy, and a whole list of other "-opathies", as well as acute (but potentially fatal) issues such as ketoacidosis...

 

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Julia
JuliaJulia lives behind the Tofu Curtain, in the Pioneer Valley, in Western Massachusetts. It's a nice place. She likes it there. Her eldest daughter, Olivia, has type 1 diabetes. She's also 13. It's a real toss-up as to which is more difficult -- the diabetes or the teen-age drama. (Read More)
Lindsey Guerin
Lindsey GuerinLindsey is a typical, yet unique, Texas girl who loves shopping, movies and reading. She loves to travel and take risks. She dreams of diabetes cures, never-ending cheesecake and her own airplane. The rest you can discover in her blog! (Read More)
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