In honor of World Diabetes Day, which coincides with the birthday of Frederick Banting (a man who was instrumental in the discovery of life saving insulin for type 1 diabetics back in 1922), I would like to share with you some facts, misconceptions and some personal thoughts about type 1 diabetes and how it affects our 4 year old daughter, Josie, her big sister and her parents. Before Josie’s diagnosis, 5 months ago, I had no idea how serious of a disease type 1 diabetes is and if asked to describe diabetes, would have rattled off many things about type 2- not really understanding how different the types were. Now that it is such a prominent presence in our lives, there are a few things that I have learned and wish everyone else understood as well…
Type 1 diabetes is very different than type 2. Type 1 is an autoimmune disease in which a person’s white blood cells, for unknown reasons, start attacking the insulin producing beta cells in their pancreas- stopping the body from producing its own insulin. Insulin is what allows you to get energy from the food you eat and we all need it to survive.
Type 2 diabetes is a metabolic disorder in which a person's body still produces insulin but is unable to use it effectively. Type 2 can often be controlled through diet, exercise and oral medications. Most type 2’s do not require insulin injections. Since 95% of those with diabetes have type 2, most people that you know with diabetes and most of what you read or hear in the media will be referring to this kind- not the autoimmune kind that Josie has.
Type 1 is not caused by eating too much sugar or being overweight. We did absolutely nothing to cause Josie’s diabetes. The risk of type 1 is 1 in 600 and 80 people are diagnosed each day in the United States. Josie just happened to be 1 of the 80 diagnosed on June 9th, 2011.
Josie will never grow out of her diabetes. Unless a cure is found, her body will continue to attack her pancreas and she will never again produce insulin on her own. Type 1 children grow into type 1 adults.
Type 1 diabetes cannot be controlled with diet and exercise, or by any supplements or pills. While a healthy diet and exercise are just as important to Josie as they are to anyone else, the only way for Josie to survive is by receiving manufactured insulin. She currently gets a minimum of 4 shots, using needles that measure 4 mm in length, each and every day. They hurt. Soon she will go on an insulin pump, which she will wear on her body at all times, and requires a much bigger needle (9 mm) to be inserted into her every 3 days. It will hurt, also.
Insulin shots and/or pumps are not a cure. They do not work as well as a healthy pancreas does and so Josie often still has too high of blood sugars or too low- even if we do everything right. There are just so many variables that can affect a blood sugar- including the number of carbohydrates consumed, physical activity, growth spurts, illness, excitement and stress. A healthy pancreas can handle all of these perfectly, without you ever having to give it a second thought. Manufactured insulin cannot.
Type 1 diabetes is never considered “regulated” or “controlled”. Each day is a new battle.
High blood sugars are dangerous and feel awful. When Josie has a high blood sugar she feels very tired, irritable and achy- like having a fever or flu. If a high blood sugar lasts for more than a few hours, then she becomes at risk for diabetic ketoacidosis- in which her body becomes so starved for energy that it starts to break down her own fat, muscles and/or organs to use for energy. This makes her very sick and, if not treated promptly, could be fatal. Every high blood sugar increases Josie future risk of damage to her heart, blood vessels, nerves, kidneys and eyes.
Low blood sugars are even worse. Low blood sugars make Josie feel foggy, shaky and scared. They must be treated immediately with a fast acting carbohydrate such as juice or candy to restore sugar into the blood. Lows can very quickly (within minutes) become life threatening. Her brain is rapidly loosing its only fuel source (glucose) and is unable to function properly. Josie could become so impaired that she could not even make her mouth function enough to drink a juice box. She could go into seizures or pass out. This would mean a call to 911 and us having to give her a large emergency shot of glucagon- something we must carry with us at all times.
1 out of every 20 type 1 diabetics will die of a low blood sugar. This newly released statistic is why we so diligently have to monitor Josie for symptoms of a low blood sugar and test her so often- including throughout the night.
In the last 5 months, Josie has had her blood sugar tested over 1000 times. This is done by poking her fingertips with a needle to get a drop of blood that can be read by a blood glucose meter. It stings! Josie must have this done anywhere from 5-15 times every day. We often run out of poke free fingers and have to poke the same finger more than once.
It takes complicated and often algebraic equations for Josie to eat or drink anything. All carbohydrates (not just sugar) have to be counted. Most food contains carbs- including peas, carrots, potatoes, pasta, bread, fruit, nuts, juice etc. All food must be weighed before Josie eats and again after. Then percentages are figured based on the carbohydrates listed for that food’s serving size, vs. the “Josie size” we actually give her, vs. the “actually eaten amount” that her little 4 year old tummy takes in. Fiber content and glycemic index of each food have to be figured in as well.
Josie can eat sugar. A piece of cake has about the same amount of carbohydrates as a serving of spaghetti, or a whole banana, or a peanut butter and jelly sandwich. It’s all counted the same and requires the same amount of insulin to be given. That being said, sweets are still only given on occasion, as treats, since we want her to have a healthy diet- just the same as before she had diabetes.
Diabetes affects the entire family. Big sister Ellie has had to learn a whole lot of patience- to eat, to get help with her homework, even to do something as simple as going on a bike ride takes careful planning ahead of time. Ellie also worries, just like we do, about her little sister when she suddenly starts slurring her words (from a low) or falls asleep on the table right in the middle of dinner (from a high). My husband has the added weight of not only being our sole financial provider but of also knowing that his daughter’s health depends heavily on the health insurance provided through his job. We both get consumed, at times, with worry and neither one of us have slept a full night’s sleep in 5 months.
Of course, the one most affected is Josie. The word “carefree” no longer gets to apply to her childhood. She has to endure pain on a daily basis and the swings of high and low blood sugars really get the best of her sometimes. There is never a break from diabetes for her. Everyday must start with a finger prick, no place can be gone without her bag of supplies tagging along, no food consumed without careful adding of carbohydrates and injections of insulin. Unless a cure is found, she will be doing these things on her first day of kindergarten, her first sleepover, her first date, during prom, while away at college, on her wedding day, during the delivery of her first child- each and every day for the rest of her life.
In spite of it all, Josie is happy! Being only 3 when diagnosed, Josie has accepted pretty quickly her new way of life. As long as we are keeping her closely monitored, Josie is able to do most everything other kids do. She plays hard, laughs tons, eats cake at birthday parties, has playdates- typical kid stuff. She will tell you that “yes” the shots and finger pricks hurt, but that “I don’t mind. It’s just what I have to do!” She is amazing!
We are happy too. I may be tired from treating middle of the night lows, my brain may feel like mush from all the calculations I’m trying to do in my head and the worry of complications from low and high blood sugars may consume me at times, but my family is still together, happy, and stronger than ever! We are grateful that Josie’s diabetes is treatable disease and that with our hard work, now, and her hard work, later, she will continue to live a happy, fulfilling life and can still achieve any dream she sets her heart on…perhaps even one of curing diabetes. :)
If you have read this far, thank you so much! It means a lot to me for others to have a better understanding of how serious type 1 diabetes is and just how strong and brave of a girl Josie is to be fighting it everyday. There are 215,000 other children in the US who are also fighting this same fight, right along with Josie, and just as many adults who have lived with it for many years. Those with type 1 diabetes are some of the strongest, bravest, most amazing people you could ever know!
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