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February 10th, 2012
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A topic came up on one of the diabetesteentalk forums which got me thinking. The topic was about how diabetics miss days from school or work because of doctor's appointments, seizures or ketones. There were alternating perspectives. Some chose to think that if you miss for diabetes related events, you should be excused or allowed time off without feeling guilty. Others chose to think that you have to suffer through at work or school and should not miss because of diabetes. After all, it is a self managed disease. (READ MORE)


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I am not a number. -- "Number 6", The Prisoner

 

One of the questions asked in a recent #dsma chat had to do with the people we live and work with who are familiar enough with our diabetes care to support us, make sure we have appropriate food and drink as needed, who know how and when to administer glucagon, and what to tell the folk at 911 about us. Some debate arose over the common patient-community designation of these individuals as "Type 3s".

 

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At the beginning of the month, I wrote about online dating. I couldn't decide how to approach my health conditions. Was I supposed to hold them back or just put everything out there from the beginning?

 

I decided to take a medium sized approach. The few that have progressed to getting my actual email address, I've told about my diabetes. It was easier to "admit" about my diabetes than hide it. After all, my blog, Diabetic Echoes, and so many other things in my life are because of that one diagnosis.

 

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It's that time of year again...fundraising! So I've written my letter. And here it is, for the world to see!

Dear______,

 

 On March 3rd, 1993, I was diagnosed with type 1 diabetes. I was 4 years old. It’s been over sixteen years since that day. I’ve struggled, grown, and I’ve gained and lost precious moments from this disease.

 

 In October of 2007, my dad was diagnosed with type 1 diabetes as well. To this day, hearing that he had this dreadful disease like me has been one of the worst days of my life. Now, it isn’t just about my own diabetes, my risk of complications, or my lows and highs with this disease. It’s about my dad’s A1c, the genetic risks of diabetes, and the worry that comes with having a diabetic loved one.

 

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On dLife's Facebook page, the following question is posed:

 

There is no doubt that doctors are key to success in maintaining your diabetes. However, not all doctors have diabetes. There are some things that even doctors do not know or understand about living with diabetes. What are some of the things you wish your doctors knew about diabetes and the daily task of living with the illness?

The responses range from issues of doctors not spending enough time with PWDs, giving incorrect information, doctors believing the information we gather about our diabetes is solely for their use (and not ours!), and having poor bedside (or examination room) manners.

 

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I am extremely irritated with my blood sugars and myself lately. I wish that I could just throw in the towel, I'm that frustrated. But I know I can't, because if I do...I stop living. I'm just so overwhelmed with the fact that no matter what I do, diabetes doesn't cooperate.

 

Since my Accutane dosage was raised, my blood sugars have started bouncing all over the place again. From 299 to 348 to 205 to 280. It's never-ending. It's frustrating. It makes me want to chunk the insulin and the meters out the window.

 

And on top of the blood sugar side effects, Accutane (or something!) is throwing lots of wrenches into my life. I'm getting migraines. I'm spacey. I'm fatigued. I'm lacking all motivation. And I'm just generally feeling like I want to quit it all.

 

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Last week's schedule was all over the place. I didn't have my usual class times, my tests were at very abnormal times for me, and I just wasn't home very much. And my logbook shows the effects of that lack of schedule.

 

My averages bounced from 103 to 246...not so steady of a pattern. And my daily blood sugar checks ranged from two checks to four...my average is five per day. On top of all that, my food patterns were really all over the place, waiting until 3pm to even eat or eating in the middle of the night on several occasions.

 

It really bothers me how necessary a schedule is for my body. I'm not an 8 to 5 kind of girl. I like to sleep in if I can. I don't want to eat if I'm not hungry. I generally hate doing the same thing every day. But with diabetes, it's hard to manage a life like that without totally wreaking havoc on my blood sugars.

 

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Just as hyperglycemia is but the tip of the iceberg when discussing the physical ravages of diabetes, depression is but the most visible diagnosis of how diabetes affects our minds.

 

I'm not talking about the temporary states of anxiety or paranoia, lassitude or somnolescence, that accompany our glycemic highs and lows, but the long-term, "you should get psychological help for this" effects of living with chronic disease in general, and diabetes in particular.

 

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Yesterday, I responded to the question about "things you wish your doctors knew about diabetes and the daily task of living [with it] by mentioning that many healthcare providers' knowledge of diabetes is incomplete and/or out of date. Rather than be a part of the problem, I've proposed a first-draft solution — some things I would put into a Continuing Medical Education (CME) syllabus to fill in some of those gaps. I'm sure I'm missing rather a chunk of stuff, but then again, this is a first draft.

 

If I were to develop a syllabus to fill in the gaps in professional diabetes education, as I perceive they exist today, these are some of the things I would consider:

 

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Today, I am participating in Blue Fridays by wearing a blue sweater in support of diabetes awareness. I've never really understood this trend where we wear blue on certain days to advocate for this disease. Who is going to ask me why I'm wearing blue today? Who is going to notice that every Friday in November, I am wearing blue? I can guarantee that answer is no one.

 

Yet we all do it. We advocate in these tiny, unified ways that show we are working for a cure. We sign up for the Walks, fundraise in a multitude of ways, write letters to Congress, post on Facebook, blog about it, and sometimes never stop talking about it. And what are we really accomplishing?

 

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Carey Potash
Carey PotashCarey is a full-time hater of diabetes. The benefits stink. His 7-year-old son, Charlie, has been giving he and his wife the finger since November of 2003. Carey's parenting humor has appeared in various websites and print magazines. He resides in the suburbs of Philadelphia with his wife and three children. (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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