THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Friday, May 18, 2012

DBlogWeek 2012 Day 5: I Want You To Know.

Today let’s borrow a topic from a #dsma chat held last September.  The tweet asked “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”.  Let’s do a little advocating and post what we wish people knew about diabetes.  Have more than one thing you wish people knew?  Go ahead and tell us everything.
1)     Sugar has Type 1 Diabetes.  Type 1 Diabetes is an autoimmune disease, which means her own body attacked the insulin producing cells in her pancreas, and no one knows WHY.  It was not caused by poor dietary choices, eating too much sugar, or lack of physical exercise.  We did not "do" anything to cause it, and there is not a significant history of any type of diabetes on either side of Sugar's family.  It just happened.



2)     When you tell me that "things could be so much worse" it doesn't help. Managing this disease takes a considerable amount of time, energy, focus, and financial resources. Comparing levels of hardship demonstrates lack of empathy.  You should know that *I* can think of a zillion things that could be worse, but none of them are of any comfort to me when I'm watching my child struggle, suffer, and succumb to the effects of this chronic, life-threatening disease for which there is no cure.



3)     Just because Sugar "looks ok", doesn't mean she is.  When a child with a seizure disorder has a seizure or a child with asthma has an asthma attack, you know they need help, because there is an outward display of symptoms.  When a child with diabetes has a low or high blood sugar, you may not be able to tell just by looking at them.  For this reason, it is necessary to check blood sugars every 2 - 3 hours around the clock, every day. If left untreated, both low and high blood sugars can lead to seizures, coma, and death.



4)    This can happen to your child too.  No child is immune to the possibility that they could also develop Type 1 Diabetes.  It can happen to any child -- and adults (usually under age 40) as well.  Please call your doctor to request an immediate diabetes screening if you notice: excessive thirst, frequent urination, increased appetite, weight loss (or lack of weight gain, despite an increased appetite), sweet smelling breath, or blurred vision.


Local children living with T1D, and their handprints

5)     My life will stop for blood sugars.  It doesn't matter if I'm sitting in my state Senator's office (done it), in church (done it), cooking dinner (done it), in the middle of a store (done it), or in mid-sentence (done it)....if Sugar is having a blood sugar problem, I *will* stop whatever I'm doing to address it.  Please don't take it personally.  I'll need a minute or two to problem solve while factoring in all of the variables surrounding that particular number, so just bear with me.  I'll get back into the game of life as soon as I can.

Taken in 2009 at the end of a meeting with Senator Harper (AZ).
20 minutes before this picture, we were dealing with a BG of 45 mg/dl
right smack dab in the middle of our conversation.

6)    Life is good.  You should know that living with Type 1 Diabetes doesn't mean our family can't be happy, feel good about life, or celebrate milestones with (gluten free!) cupcakes.  Yes, it's hard.  Yes, it's exhausting.  Yes, it's complicated.  Yes, it's all consuming at times.  Despite all of those things, however, we are incredibly blessed to have Sugar in our lives.  We believe that every smile, every laugh, every victory, every joy, in fact EVERY GOOD THING comes from God!  We are incredibly grateful for the way He has carried us thus far, as we make our way through this journey of life with Type 1 Diabetes.




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4 comments:

  1. Wonderful post for today. You nailed it beautifully.

    ReplyDelete
  2. Beautiful Post, Wendy! I feel so many of the same things...thanks for putting my feelings into words! :)

    ReplyDelete
  3. Smiling and nodding through your whole post! Especially #6! :)

    ReplyDelete

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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.