Letters to the Editor

Aug 1, 1998

Too Pumped Up?

Your Up And Pumping column presents a very positive view of life on an insulin pump. I have been using a pump for eight months. Although I have significantly better blood sugar control, I can't say that everything has been easier. You could provide more information, the ups as well as the downs, about what using a pump is like.

Kevin Odell, PharmD
Clinical Pharmacy Specialist Diabetes
Plymouth, Minn.


"A Poor Choice of Words"

I am 44 and recently lost my job as a big rig truck driver after 25 years due to diabetes complications. My feet were getting numb and my vision was blurry. I have tried to get Social Security Disability twice but have been turned down. I am currently appealing. My big problem now is that I need to find a malpractice attorney because I feel I was inadequately treated by a doctor in a health clinic where I went for diabetes health care.

It started in 1996 when I went in with the symptoms of diabetes and my blood sugars in the high 300s. I never saw a doctor for the first year-only a physician's assistant. I was put on oral medications which didn't help much, and my BGs were still very high. At the time I didn't know anything about diabetes and had no medical insurance. After a year they assigned me a real doctor because my BGs were still so high. I was treated by this doctor for a year-and-a-half and he never once asked me to take off my shoes so he could look at my feet. I didn't receive a ketone test in two years or a HbA1c test.

By this time nerve damage was setting in, and I had full blown neuropathy and retinopathy. At this point the doctor put me on permanent state disability, and after that I wasn't allowed to drive trucks anymore. This disability will run out in September, however.

Recently, I went to the emergency room with an infected foot that has me in excruciating pain. I told my doctor that my BGs had been way too high for too long, and I asked him to prescribe insulin. My doctor refused and suggested that I try higher doses of Micronase with Rezulin and Glucophage. He said in two weeks if there was no improvement I would get "my wish." I was stunned by his statement. I told my doctor I had never wished for diabetes or having to inject insulin. He apologized later for using what he called "a poor choice of words."

To make things worse my doctor had put me on Elavil to improve the numbness in my feet. It made my numbness worse and caused memory loss. Now I don't have a doctor because I threatened a lawsuit and they refused to treat me anymore. I am desperate to file but I need an aggressive malpractice attorney to help me.

You can publish my address and phone number as I am in physical and financial ruins, so this is about my best chance for help.

Rick Green
4530 Alamo
Simi Valley, Calif. 93063-1735
Phone: (805) 577-9606


A Job Well Done

Diabetes Health is without question the finest publication of its kind that I have ever seen. The information you publish is astonishingly pertinent. When I first subscribed, I wanted to know about the status of the noninvasive meters. The first issue I received had a thorough report on that. Later, I noticed that different foods had radically different effects on my blood sugar. Of course, the next issue had a fascinating article on the glycemic index. The latest issue has an excellent article on what foods are the most satisfying - another thing I was aware of, but I thought was just my imagination.

Most of what's out there is fluff and feel-good silliness. Your surveys of the readers are tremendous. Thanks for a wonderful job.

Jack Gerber, PhD
Internet


It's Worked for Me

I have type 2 diabetes and would like to respond to the study published regarding the use of vitamin C to lower blood sugar. The study claimed that vitamin C is a very important part of a healthy diet. In addition to vitamin C, I have found that other foods such as cinnamon, garlic and high-fiber foods such as wheat germ and oats can help lower my blood sugar. Evening primrose oil gel tablets have also helped-I have used it to treat fibrosis breast disease and it has worked well for me.

Marie Batchelier
Red Hook, N.Y.

Editors' Note:Vitamins and herbs should not replace the guidance of a medical professional, and one should not attempt to use them as the sole treatment for diabetes. As with any diabetes treatment, BG testing is also of utmost importance.


Learn and Live

We think your publication is the very best source for information on diabetes. We learn a great deal from every edition.

Our daughter, now 14, was diagnosed when she was 10. Unfortunately, her doctor did not recognize the symptoms prior to the diagnosis and we almost lost her. She fell into a coma while camping and had to be airlifted to Children's Medical Hospital in Dallas. She had a blood sugar of 950! The hospital staff did not think she would pull through, but she did.

Since then we have learned as much as we can and have chosen the tight-control method. We have nightmares of low blood sugars, of course, but we also always have some glucagon on hand (yes we have had to use it). Our hope is that the pump will be perfected and a better, possibly noninvasive, blood sugar monitor developed.

Thanks for an excellent publication. Keep up the good work!

Alynne, Bruce, Christina and Sean Hanford
Internet


A Better Choice of Words

My 2-1/2-year-old daughter was diagnosed last September. Since then I have read many publications and yours is by far one of my favorites. I do, however, have a personal plea.

Let's not label our children and individuals who are really great people who happen to have diabetes with the "diabetic" label. I particularly noticed it several times in your latest edition. These people are not alcoholics or neurotics or any other "ic" label. When referring to people with diabetes, can we say just that - people with diabetes or children with diabetes.

My daughter is a wonderful, charming, intelligent girl who happens to have diabetes. Let's reserve the "diabetic" label for "diabetic complications" or "diabetic tools" or other inanimate objects. Please help me retain my precious little girl's identity and not lose her to a label that is hurtful. Hopefully, the example you set will catch on.

Willa Ebersole
Internet

Editors' Reply: Diabetes Health has begun to use the word diabetic with greater frequency in the past four to six months. This is in response to the large number of letters and emails received in which persons with diabetes refer to themselves as diabetic. It has been our experience that people with diabetes are far more likely to refer to themselves as "diabetic," while family members, educators and others who work and live with people with diabetes often find the term distasteful and prefer "person with diabetes."

Diabetes Health respects the views of all members of the diabetes community and wants to honor the desires of as many members of our community as possible. We want to hear from you. If you prefer one term over the other, please give us a call at (800) 234-1218 ext. 130 and leave a message. Your responses will appear in a future issue.


Thanks for the Tips

I have congenital heart disease and have been taking digoxin since 1980 to help regulate my rapid heart rate problem. I am well aware of its adverse effects. I have only recently been experiencing more problems with irregular heart beats. I have also recently started taking high levels of calcium and magnesium, under the guidance of my dietitian and my doctor of oriental medicine who is also a trained acupuncturist. They both know my medical history and use of digoxin.

When I saw your "Type 2 Tips: Medications for Heart Disease, High Blood Pressure and Kidney Disease," in the June 1998 issue I zipped to the information on digoxin. The entry in the "Comments" section regarding digoxin was like a bolt of lightening: "Those with abnormal levels of calcium, potassium or magnesium may develop an irregular heart beat when taking digoxin." Wow!

I have stopped taking the calcium and magnesium and will show this article to my health care providers very soon.

Thank you so much for your informative publication.

Toni Smith
Santa Barbara, Calif.


Empathy for Stephen Craig

My heart broke after reading your editorial on Steven Craig ("A Brave Soldier," June 1998). I did not know the man, but I can totally relate to his situation.

I am 42 years old and have had type 1 diabetes for 31 years. In all outward appearance I seem upbeat , outgoing and ever positive, even though I have gone through devastating ordeals in the past five years. My doctors are in awe of me they say because I remain so positive through all my traumas. I take excellent care of myself and am always seeking new treatments and even experimental procedures for diabetes.

Every day, however, I am in horrible pain and have lost my career due to health problems. I recently had surgery where I lost 75 percent of my stomach and 10 feet of intestines due to neuropathy. This is just the latest incident. Only those who live with me and see me on a daily basis realize how difficult my life is. With my abbreviated system I now test my blood sugar approximately 10 times a day to keep in control, and even this does not always work. Having type 1 diabetes this many years will take its toll no matter how tight your control (especially if you are female, due to childbirth and hormonal changes), and I wish the general population was more aware of this deadly, costly disease.

My sister took her life at age 32 after suffering with diabetic complications for many years, and I only hope I can remain strong and not follow suit. I think about it often, however, especially when just surviving each month is so difficult. Living on the income social security provides is almost impossible! Too bad there isn't more help for people like me and others just like Steven Craig.

Terri L. Calic
Internet


Advisory Board Member's Reply

Thanks for sharing your story with us. There is no doubt that you've done a remarkable job of keeping up your spirits in the face of some truly awful experiences. Congratulations!

I must disagree with you on only one thing you said-that type 1 diabetes will take its toll no matter how tight your control. This just isn't true. There's really no doubt about it, tight control does help to reduce the risk of long-term complications, and it helps A LOT!

However, this does not necessarily mean that the problems you've run into are somehow your fault. Tight control aside, there are lots of other metabolic and genetic factors that can increase or decrease the odds that complications will occur, and we're learning more about these all the time.

Anyway, I hope you'll write again and share more of your story. What has helped you to keep going? How do you keep up your spirits? Also, you mentioned that you wish there was more help for people like you and Steven Craig. What kind of help were you thinking about? One never knows, perhaps we can make something happen.

William H. Polonsky, PhD, CDE
Sharp Health Care, Diabetes Treatment and Research Center
Diabetes Health Advisory Board Member
San Diego


What About Camp UTADA?

After reading your publication's "Summer Camp Countdown" article in the June issue by Sandra Silvestri, I was astonished with the failure to reference Camp UTADA, the American Diabetes Association's summer and winter camp for youth and families of type 1 diabetics in the state of Utah and the entire Intermountain West region!

For more information, call camp director Dave Okubo, MD, at (801) 566-6913.

Nathan D. Gedge
Camp UTADA and Intermountain Diabetes Service Center
Salt Lake City, Utah


More Flower Power

My husband and I read with great interest Judith Jones Ambrosini's recipe in the June 1998 issue ("Please Do Eat the Daisies"). For many years we have eaten edible ornamentals in our food. My mother-in-law is the noted cookbook author Coralie Castle, who has written two cookbooks on the edibles in our gardens. The first of which was the Edible Ornamental Garden (now out of print). The second, in its second printing, is Cooking from the Gourmet's Garden: Edible Ornamentals Herbs and Flowers published by the Cole Group.

We truly feel you have overlooked very valuable resources by not including these publications in your article.

Peter and Deborah Apple-Ayers
Internet

Judith Jones Ambrosini replies: Thank you for supplying another valuable source of information on edible flowers. Sorry my own research didn't locate the books you mentioned. I've asked my librarian to locate them for me. I very much look forward to reading additional material on this fascinating subject.

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Categories: A1c Test, Blood Sugar, Diabetes, Food, Insulin, Insulin Pumps, Letters to the Editor, Type 1 Issues, Type 2 Issues


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