Diabetic Friends Action Network (DFAN) Online Diabetes Newsletter - May 1996 Edition May is a month that brings warm weather to most of us. That's great weather for walking or whatever other outside activity you like to do. If you or your child has diabetes why not plan a family outing that includes some type of exercise? Playing with a frisbee or just riding a bicycle with your child can not only make him/her happy, but also help you and them with their diabetes management plan. Our diabetic weight loss club is getting new members every week. Why not join? It's free and all you need to do is send us your e-mail address! You'll not only get tips on losing weight while you get your diabetes under control, but you'll also learn more about diabetes. There are three files available for you to read this month. They include: 1. Charcot Foot/Joint - This is a MUST READ file for ANYONE associated with diabetes (whether or not you're the person with diabetes). Charcot Foot/Joint can occur as a "silent disease" so it's important to know about it BEFORE it happens. 2. Poor Circulation/Leg Cramps - This file will give you information on this problem many diabetics deal with on a daily basis. This file includes explanations, advice for treatment, and tips on how to help prevent poor circulation problems. 3. Glucophage/Metformin - This file will give you a background on Glucopahge and how it's used to treat Type II diabetics. If you'd like to read any of these files please send a request and they can be uploaded to your e-mail box. Please specify that you'd like to read the "MAY FILES", and request file 1, 2, 3 or "all". Send your requests to: belve@aol.com If you're changing your e-mail address or you'd like to be taken off our distribution list please let us know. _______________ARTICLE_______________ I Will Never Give Up! By Janice Hendrix I have always viewed my 33 years with diabetes as a challenge. I have always strived to have a fighting spirit even though my family history with diabetes was very poor. It became more of a challenge 4 years ago when I began to develop complications from having diabetes so long. First there was peripheral neuropathy, retinopathy, gastroparesis,hypertension,kidney disease and peripheral vascular disease. I said that I would not give up. The will to live was very strong. I didn't think I had anything else to face till July 1995. I had been hearing a noise in my head in the sound of my heart beat. An angiogram was done at my suggestion. I found out I had very severe cerebrovascular disease. One carotid artery was 100% blocked and there were other problems. I was told that I would have a massive stroke. In September a doctor from South Carolina said that he could do something. He did another angiogram and said that it was probably a blood clot. They still couldn't do anything. I still wouldn't give up. I began calling specialists all of the United States. They came back saying that it was plague on the arteries. The right carotid artery couldn't be touched because of where it was at in the brain. I started having mini strokes on a regular basis. I kept on being told that my life was at stake but nothing could be done. In November I happened to sit down to listen to the national news on television. They had a story on Stanford University and the experimental work they were doing on the arteries deeper in the brain. It was an answer to a prayer! I called Stanford University the next day and got to the right department. I sent the X-rays to them the next day. On Tuesday of the following week a doctor called and said that they could do something. On December 14th a balloon angioplasty was performed on the right carotid artery. It was successful! The point of this story is to fight diabetes and its complications. Keep strong the will to live. In my case I will never give up! Glossary For This Article: Peripheral Neuropathy - nerve damage that usually affects the feet and legs Peripheral Vascular Disease (PVD) - disease in the large blood vessels of the arms, legs and feet Retinopathy - disease of the eye specifically concerning the retina Gastroparesis - diabetic complication that affects the stomach Cerebrovascular Disease - damage to the blood vessels in the brain that can result in a stroke Angiogram - a study of the blood vessels where a dye is injected _______________ARTICLE_______________ Never Say Never! I've been wanting to write this for some time now to let other parents know there is a way to make doctor's visits less stressful for their children. Three months ago, a friend of mine mentioned that she took her son to have his Hemoglobin A1c (see Glossary at the end of this article) levels and that the doctor didn't do it intravenously but through a finger stick. Stunned, with mouth on the floor, I wanted to know more about this. Every three months my son has to be dragged, kicking, screaming and fighting to have his blood drawn intravenously just to have his A1c level done. My son sticks himself 4 times a day. He just turned 4 years old and he's been doing this for about a year or so. So to have his A1c level checked with a finger stick would be no big deal for him. After finding out that they had an A1c analyzer at Mt. Sinai Hospital up in the city, I was thrilled. It could read my son's blood sugar within 15 minutes of having it fed into this $20,0000 machine. Not having insurance coverage to be able to go to the doctor's office put me at a standstill. I have Medicaid. I talked to them at the doctor's office and explained to them the problem with such a traumatic experience every three months just to do the A1c. They allowed me to call the day before the appointment to go to their office and do finger stick. Then I'd run back over to the clinic to see the doctor for my son. When I went to the only Peds/Endocrinology clinic on Staten Island I was told that it couldn't be done since they had no intention of getting this expensive machine and that they had no other method of taking blood for the purpose of taking A1c levels. The person I was speaking to said, "I only work here." So I went over her head. I wrote a letter explaining the situation to the head of the blood lab. I had information about the analyzer sent to him. He called me and told me YES they could do a finger stick A1c level for my son!!!!! And that he wouldn't have to have it done through his tiny arm only once a year! That we could live with, for now. When I get older and my son takes care of himself I want him to be able to take care of himself the same way I have taken care of him. I'm not going to be able to stand behind him all his life in regards to his diabetic care. I don't want him to dread going to the doctor every three months. Most people only go to doctors when they're sick. They don't go for check ups and I know my son wouldn't want to go for a checkup knowing he has to have blood drawn intravenously. Whether or not you're diabetic don't take no for an answer. PLEASE! Ask questions from EVERYONE. Someone knows something, or knows someone who knows something that could better your quality of life. It's your job, Mom and Dad, to find out and be an advocate for your diabetic son or daughter. Do it! Thank you and good luck. Glossary For This Article: Hemoglobin A1c - test that measures how much glucose is stuck to the red blood cells. This test shows what a person's average blood glucose has been over a four month period _______________POLL RESPONSES_______________ Last month's poll question asked if you thought humor should be used to alleviate some of the stress associated with diabetes. Here's are the response we received. Response #1: "I believe in trying to see the funny side of things. Humor is a very vital part of healing and of life in general. In fact I count on my computer for at least one good laugh every day. Generally this will be in a DIABETES related area (for example, CIS:DIABETES, Misc.Health.Diabetes, Ect)." CIS:DIABETES = Compuserve Diabetes Forum Misc.Health.Diabetes = Usenet diabetes section Response #2: "I feel that humor can make having diabeties easier to live with. I being a bit of a joker, tend to relate lots of my experiences in a humours way. Don't get me wrong I also point out that it is a serious problem. If you can look at our complaint light heartedly then I find it makes it easier to control. My mates at work know all about my condition. When I'm having some fun they often say " here he goes on one of his diabetic trips", but they know its just fun. They also understand through my diabetic humor just what is involved and how to handle the situation when I do need help. Understand most people will be laughing with you, not AT you. My opinion is "I will not let it rule my life, I cannot beat it but will not beat me". For the 38 years it's been apart of my life i have made it good to live with it." Response #3: "I think we need to keep our sense of humour, but it should not be made light of." _______________ARTICLE_______________ COMING OUT OF THE SHELL I've had diabetes for eleven years and I can't say that I've always done my best when it comes to taking care of myself. As a matter of fact, I know I haven't taken care of myself the way I should have. I started out well. When I was diagnosed it took a little while for the reality of diabetes to set in, but once it did I took my medications on time, and I stuck to my diet relatively well. My blood glucose levels fluctuated from time to time but I was doing ok. Sticking myself to check my blood glucose levels was strange and uncomfortable at times but I did it. I also had problems adjusting to taking insulin injections. I would get anxious and nervous when "injection time" approached. I coped well for about a year. During that time I had a honeymoon and didn't take insulin injections for about a year. When the honeymoon ended and I had to go back to taking injections things got off track. I went through a period where I didn't want to accept my diabetes. I stopped reading magazine articles that dealt with diabetes. My subscription to Diabetes Forecast magazine was canceled and I was happy about that. I wanted to hide in my "non-diabetes" shell for as long as I could. If reading diabetes related magazines made me think about having diabetes they weren't going to be around me. I stopped getting diabetes supplies. I figured I didn't need them anymore. I wasn't going to acknowledge that diabetes was in my life. I went deeper into my shell and stopped going to the doctor altogether. I couldn't stand to hear them tell me what I was doing wrong anymore. I knew I wasn't following any type of diabetes management plan. My way of managing my diabetes was to try to put it as far out of my mind as possible. I bought my insulin from the pharmacy. I didn't need too much. I rarely took the right dosage of insulin so one vial lasted a long time. I got to the point where all I had the energy to do was walk to the refrigerator to get something to drink. I could get up and go to the bathroom but that was about it. I would lie in bed all day long, sleeping. This lasted about five years then I got a computer. It took a few months for me to get a modem, but when I did I found places I could use to talk to other diabetics. Up until this time the only other diabetic I associated with was my father. I found the Prodigy Diabetes Bulletin Board first. Next, I came across the Compuserve Diabetes Forum which was a place that really brought me out of my shell. I learned that I didn't have to live the rest of my life in a rocking chair. You see, I had the impression that having diabetes meant that my life was over. I spoke to many diabetics who were working and living their lives to the fullest. I still had problems that needed to be dealt with but just knowing that people could actually "live" with diabetes brought me out of my shell enough to start reading about diabetes again. It's been eleven years since I got the news that I had diabetes. It's been a rollercoaster of high blood sugars, low blood sugars, fear, knowledge, anger and many other emotions. I now know that having diabetes is different for everyone. There's no one way to approach it that will work for everyone. So that's how I've decided to deal with it, in my own personal way. _______________THIS MONTH'S POLL QUESTION_______________ Have you ever felt ashamed or embarrassed to let your doctor know you've been getting high blood glucose results from your home testing? How did you deal with this problem? All responses will be used in the next newsletter without any names or other identifying information being supplied to our readers. So please don't be apprehensive about participating in this month's poll. _______________ARTICLE_______________ If you'd like to "speak" to other people with diabetes but you can't afford to sit online for an hour each night then a list might be the answer. A mailing list could be considered a "forum", only you "meet" in e-mail. Mailing lists are delivered to your e-mail box. Some mailing lists generate quite a bit of mail so make sure you use an e-mail account that doesn't charge you per e-mail, or use an Internet Service Provider that gives you unlimited access. I wouldn't recommend using a Internet Service Provider such as America Online, Prodigy or Compuserve if you're charged by the hour. It may take quite a while to read through all the e-mails you might receive and online charges can add up if you're charged per e-mail or by the hour. When you're subscribing or unsubscribing to a mailing list follow the directions. Don't use signature lines or include anything other words in the e-mail. Once you've joined the mailing list you can use your signatures lines or any other lines you'd like to use. Here are some lists you can join. 1) DIABETIC is a forum for open discussion of diabetic concerns, basically for the diabetic patient but from what I've seen all diabetic questions are welcome on the list. This list has from 500-700 members. To join the DIABETIC list send and e-mail to: listserve@Lehigh.EDU the body of the message should read: subscribe diabetic firstname lastname You must use your real name. If you ever need to unsubscribe to the DIABETIC list send an e-mail to: listserve@Lehigh.EDU the body of the message should read: signoff diabetic You don't need to give your name since the listserver will get it from the automatic header that arrives with your e-mail. Do not give your name. The listserver will pick it up from the automatic header information. 2) TYPE_ONE The TYPE_ONE list is a low volume mailing list moderated by John Myers. This list emphasizes issues and concerns of Type I diabetics (insulin dependent) To join this list send and e-mail to: listserv@netcom.com the body of the message should read: subscribe type_one name@address Notice that you use your e-mail address when you sign up for this mailing list, not your real name. To unsubscribe to this list send an e-mail to: listserv@netcom.com The body of the message should read: unsubscribe type_one name@address THE DIABETES-NEWS THE DIABETES-NEWS is a newsletter sent weekly. It is moderated by Scott King. Each issue contains on or two diabetes related news stories along with a table of contents for Diabetes Interview, a monthly print newspaper. To subscribe to THE DIABETES-NEWS send a message to: listserv@netcom.com. The body of the message should read: subscribe diabetes-news. If you would like to unsubscribe to THE DIABETES-NEWS send a message to: listserv@netcom.com The body of the message should read: unsubscribe diabetes-news _______________METER BANK ANNOUNCEMENT_______________ METER BANK IS AT 92 AND STILL GOING STRONG! We're coming down to the final weeks for the Meter Bank to take advantage of the Lifescan free meter offer. If you have any Lifescan Lifepoints and/or Lifescan fulfillment coupons please send them in to the Meter Bank as soon as you can. The Meter Bank has placed 92 meters into the hands of diabetics all around the world! There is also an urgent need for Lifescan Free Meter Fulfillment coupons (in specially marked boxes of Lifescan strips). If you run across these fulfillment coupons please send them to Richard so he can use them to help more diabetics get free meters. If any of your family members or friends use Lifescan strips please let them know about the Meter Bank and the need for these fulfillment coupons. The Meter Bank also needs the following: Meter Coupons that sometimes can be obtained from Lifescan. These coupons are for the meter itself and are blue in color. New Unused Meter Information (to be added to the New Meter Database) This information will be used to match new unused meters with people who need them. Used Meter Information (to be added to the Used Meter Database) This information will be used to match used meters up with trade-in allowances and rebates offered by companies. Stamps & Envelopes There is also a "Meter Bank FAQ" available for the asking. This Frequently Asked Questions file will give you background information about the Meter Bank and the person who runs it. If you'd like to read this FAQ send a request to: xjmv62a@prodigy.com -or- belve@aol.com We'll get the FAQ right out to you (or your family and/or friends) so you can start participating! or if you'd like to write Richard directly send an e-mail to: batman@phoenix.net -or- arthur@tenet.edu The Meter Bank is using 50/50 Pharmacy to have the meters delivered to people. This pharmacy donates fifty percent of it's profits toward diabetes research. The Meter Bank is a way for you to help people with diabetes get new meters to help them with their diabetes management plan. Having a blood glucose testing meter plays a critical role in someone being able to control their blood glucose level. So why not help someone in a meaningful worthwhile way and donate to the Meter Bank. _______________BACK ISSUES_______________ If you'd like to receive our list of back issues send an e-mail to: belve@aol.com This document (c) Copyright 1996, all rights reserved. Redistribution of this document is hereby freely granted so long as the document is redistributed in its entirety (here interpreted as all text which was not automatically generated by software as part of the distribution process); in particular, with attributions and this copyright notice.