Living with Diabetes

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Facing Diabetes and Its Complications

"You can eat all the ice cream you want in heaven." So began the eulogy for my friend Sally who had died of diabetic complications two days before. The minister's talk was aimed particularly to Sally's six year old son on the front row of the chapel. I cringed because I have diabetes too. My feelings were exactly the same when my doctor informed me that I had the scary disease six years ago. I loved sweets, still do, but I thought then that they would be available to me only in the next world. That's what everyone says: "No sweets." I knew that I wanted a different answer.

Educational Seminar

I attended a day-long diabetes educational seminar at a large hospital. My doctor had written the educators to inform them of my total blindness. The resulting apology on their part was the only "accommodation" they made for me. There were two other people who are blind present but we were just expected to memorize everything. I had a large folder filled with printed information which they asked me to have my husband read.

Taking Charge of My Own Life

One week later, I attended a two-hour individualized diabetes training. The educator explained everything to my husband and showed "him" how to check my blood sugar. I then realized that I would have to find information on my own. I scanned the National Library Services for the Blind (NLS) listings for books on diabetes that had been published in the last five years. I ordered and read fifteen of these books, ranging from gourmet cooking to foot care.

I am a faithful reader of Diabetes Forecast, a magazine published by the American Diabetes Association, and available through the NLS lending library.

I made an appointment with a diabetes educator at the local non-profit vision center. She told me about resources available from the National Federation of the Blind. I finally found a braille meal exchange carb chart.

Through my research, I have found, to my great joy, that I can have all my favorite foods (even ice cream), but in very small amounts.

Monitoring Diabetes

The educator also told me about talking blood glucose meters. I thought I was going to be independent after all.

Well, I've tried four different "marvelous new adaptations" of the standard little machine; none have helped me. I cannot see enough to tell if the blood drop is actually in the right spot on the test strip. So the talking is useless. All of my doctors, including a world-class diabetologist (an internist who has expertise in diabetes care) just say, "Oh, I don't know what you can do."

Just because I can't use the talking glucometers doesn't mean that people with low vision can't benefit from one, use a glucometer with a large print display, or use other low vision aids to access the meter. However, if you live alone or otherwise can't check your own blood sugar, I'm not sure what a good alternative might be.

Don't give up. Keep talking with your diabetes educator and, if you do come up with a workable approach or find an accessible device that works for you, please share it! Read about some of the alternatives in AccessWorld.

You Can't Give Up

I have retinitis pigmentosa and have been visually impaired since my late teens. I consider myself an expert on finding resources that people with a variety of disabilities need. I am especially knowledgeable concerning resources for people with vision loss. Most people who have both diabetes and vision loss are not trained resource-finders. Many just give up and eat what they please. Their doctor's visit is the only time they know their blood sugar count.

There are thousands of people with low vision or blindness who have type 2 diabetes. Poor health education and lack of accessible health information, along with a lack of exercise, contribute to this high number of people who are diabetic and visually impaired. The belief that watching your blood sugar is impossible, that you have to give up on exercise (not true by the way) and eat nothing but raw vegetables with a morsel of dry chicken causes most of these individuals to despair and decide they aren't willing to wait to get to heaven for their ice cream.

My Suggestions

My suggestions for other people with diabetes and visual impairment are: learn all you can, learn to eat the foods you love in smaller servings, exercise a little bit each day, join a diabetes support group (call your nearest hospital for a location), check out some of the information on diabetes on VisionAware, and most of all, advocate for more accessible information and machines.

Other Resources


Topics:
Diabetes and diabetic retinopathy
Low Vision
Personal Reflections
Retinitis Pigmentosa

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