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May 26th, 2012
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I got a link to an article from ABC News today about Halle Berry. I was encouraged to see that doctors are equally concerned with her claims that she's cured herself of type 1 diabetes.

"Diabetics quickly took to the blogosphere to condemn Berry for claiming that a change in diet could cure Type 1 diabetes, an autoimmune disease in which the pancreas permanently fails to produce insulin, the vital hormone that regulates sugar levels in the blood."
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Diabetes is a unique disease in many ways.

 

One way that I never really realized until recently is the guilt it places on the patient.

 

With other diseases, your doctor is in control of everything. Your medicine, how often you take it, and how much. But with Diabetes, the patient is the one who has to manage it. So when there is a problem, the patient gets blamed.

 

But is that fair? Sure, I know that I decide if I am going to take my insulin on time, or bolus correctly. I am the one who either chooses to exercise or not and eat healthy foods or not. Those are up to me.

 

But, tell me this, who is to blame when I take my insulin correctly, exercise, do everything right, and for no reason my blood sugar is 270?

 

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After Charlie's shower last night, the following conversation took place as I dried his hair with a towel.
"Dad, can we not do a site change tonight?"
"Why?"
"My tushy doesn't feel so good."
"Well, we need to see how many units are left in the pump. Don't you want to just get the site change over with?"
"Well, my tushy really doesn't feel so good right now. Tomorrow would be better."
"I'm not sure Charlie. Let's see what mommy thinks."
"Well, right now my tushy is just charged up to 10. It needs to be at 100. By tomorrow night, it should be totally charged up."
"Uh huh," I said, playing along. (READ MORE)


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When my dLife mail showed up in my inbox with Melissa's Diabetes Viewpoint column When It's Time to Change Doctors, it really clicked with me.
Lately, I've been having problems with my endo. Granted, I'm pregnant and extra needy these days, but I just feel that I'm not getting the personalized attention that I deserve and need.
Truth be told, I never see him any more. Once I month, I come in to his office, wait for what is often an eternity (despite intentionally scheduling for "slow times") and when my name is finally called, I get to see a nurse instead of the doctor.
Every other week, I e-mail my blood sugar logs to the doctor, along with any questions or concerns I have and a brief update. For a while, it was mostly, "Things are going good. I hit a little bump, but I upped my insulin and it smoothed out." (READ MORE)


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I'm really frustrated today. Not because of blood sugars (which have stayed between 110 and 140 all day) or insulin or any of those other details of this disease. I'm frustrated because I can't change doctors without completely stressing out my life.

 

I received a suggestion from my old pediatric endo about a doctor in town, so I checked the insurance to make sure I'd be covered. And sure enough...he's not on my acceptable provider list. Even if I wanted to pay out of network, I can't. Some rule about providers being within 75 miles of my home and I'm not on a PPO.

 

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Since I've made the leap to find a new doctor, I figured it's about time that I make a list of what I need/want in my new doctor. I've never seriously thought about it, even though I've been through many doctors. But since I'm a thinking adult, I might as well figure it out.

 

When I was diagnosed, I don't think I got a choice on who I saw for my diabetes care. I'm pretty sure I wouldn't have liked anyone, even if I did get to choose. I was a pretty ticked off little 4 year old. I saw that first doctor, Dr. Sherman (who was amazing, despite my dislike of doctors), up until I was about 10. When she moved away, I stayed within the same system that I was in (it was the best pediatric diabetes care in the state). I had a choice of about five doctors.

 

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If you've kept up with the latest changes for me, then you'll know that I decided to switch birth controls after a lot of research and careful consideration. In October last year, I started Seasonique but had 23 days of breakthrough bleeding...I couldn't take it. So I switched to Ortho Tri Cyclen Lo, a birth control that I'd taken before and hadn't noticed any side effects with.

 

But this time around, I've gotten plenty of side effects and just don't think it's giving me enough benefits to offset them. I've really had trouble with the changing hormones (it's tricyclic so every week, it goes up until my period) and blood sugars. Stress, physical or emotional, makes my heart beat in my ears which is not only annoying but scary. I'm still getting breakouts the week before my period. Although my periods are lighter and the cramping is less, I'm still getting a lot of pain starting 10 days before my period as well as some mood issues.

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So much has happened this week that I can't even begin to express what is going through both my head and my heart in any logical form. I feel like life suddenly did a 180 degree turn. The kind of turn that you KNOW is there but still gets you EVERY time. I mean, I knew that life had to fall into place for me at some point. But when it actually happened, I was nearly dumbstruck.

 

First, Tuesday brought about my graduate school acceptance as well as a job interview from resumes I mailed out. Wednesday brought a second job interview that I am truly excited about and the finalization of my move on September 14th. Thursday, we had some family issues. Friday, I received my diploma in my hands instead of the promised "you'll get it eventually."

 

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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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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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Brenda Bell
Brenda BellBrenda was diagnosed with high blood pressure, high cholesterol, and Type 2 diabetes in July 2002. After a rocky start, her diabetes has been diet-controlled since January 2004 and she hopes to keep it that way for as long as possible. (Read More)
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)
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