This year’s topic is: 6 things you want people to know about diabetes.
So here are the 6 things I wish everyone knew about Type 1 Diabetes:
ONE- There is no heartbreak like the daily heartbreak of your child fighting to live the life so many others take for granted. My daughter was 7 years old when she was diagnosed and I will never forget that life changing moment when I knew everything would be different. From the soccer games she had to stop playing to recess time spent in the nurses office all because we had to learn how to manage and fight this disease.
The heartbreak continues everyday as I watch my beautiful baby grow. It is hard enough to be a teenager, but add in something else that singles you out and makes you different and that equals my daughter testing her blood sugar in the bathroom, doing insulin on the sly-hoping no one will see, and not wanting to call home when there is a high because someone will give her a hard time for using her phone, even though she has permission to do so.
TWO- The media does not distinguish Type 1 Diabetes from Type 2 Diabetes when they report the devastation Diabetes is bringing to our children, but their reports are about Type 2 Diabetes.
The misunderstanding and lack of knowledge about the difference between Type 1 and Type 2 Diabetes could be lessened if only the media took the time to differentiate the two diseases. And while I do agree that the sweeping cases of Type 2 Diabetes affecting children across the world is devastating, when people do not understand that there is a difference between the two diseases they can cause pain and suffering to children with Type 1 Diabetes. Statements like "well you should get more exercise and eat better, then you could beat this" can be confusing and painful to a small child who is learning to fight their battle (and just plain pisses my now teenager off).
THREE- Living with Type 1 Diabetes is a minute by minute, exhausting battle from which there is no rest. Every minute of every day my daughter is Diabetic. She never gets a timeout or a break. And while she can win this battle and live a long and wonderful life, she will have to do so by injecting Insulin into her body which is not a painless process and while every day is a battle, the war will last her entire life.
FOUR- While I will be there to hold my child's hand, she must ultimately learn and become independent with her Diabetes management so that she can live a full and wonderful life.
To the schools, teachers, principals, school nurses, teachers aides and everyone else who may interact with my daughter as a child: trying to control what she does, when she does it, where she does it, and why she does it...will not help her learn to take care of herself. And although we understand you have concerns about liabilities and do not want to be held accountable for a disease you do not understand, my daughter has more understanding of this disease than all of you put together. She has been doing this every day for 8 years, as her mother I have faith in her and trust her (even though she makes mistakes) so I expect you to do the same.
What this means in a practical way is: my daughter will test her blood sugar, giver herself insulin, and take care of what she needs to wherever she is and whenever it is most convenient for her, not you.
FIVE- Insulin is NOT a cure for Diabetes.
While Insulin will keep my daughter and other Diabetic children alive, it is not a cure for the disease. Although we can fight our battles with this weapon, it is not enough. There are so many things science and technology can do, and yet we do not have anymore understanding on why or how to stop the islet cells in the pancreas from dying which results in making no Insulin. My baby deserves a cure. As does every child who carries this war within them.
Six- Medical professionals miss early diagnosis of Type 1 Diabetes everyday.
You, the parent, know your child better than anyone else. Whether they have Diabetes or another disease or illness, you must trust your instincts. A simple finger poke in the doctors office can help determine if your child has rising blood sugars. Consult your doctor if you're concerned about Diabetes or if you notice any Type 1 Diabetes signs and symptoms in yourself or your child. We took our daughter to the doctor 3 times over an 8 week period and each time I was told I was being a worrisome mom and I just needed to relax. The last visit my daughters pediatrician diagnosed my daughter with a migraine (because she had a terrible headache and was vomiting). I took her to my mother who is a ICU nurse and my mother recognised the symptoms and we were able to get my daughter the help she needed before she got much worse. Her blood sugar upon admission to the hospital was over 580.
Some of the warning signs of type 1 diabetes (these may occur suddenly) as listed at JDRF.com are:
Extreme thirst
Frequent urination
Sudden vision changes
Sugar in urine
Fruity, sweet, or wine-like odor on breath Increased appetite
Sudden weight loss
Drowsiness, lethargy
Heavy, labored breathing
Stupor, unconsciousne
Every person is different and each person's symptoms can be equally different. Like I said, you must trust your instincts about your child and communicate all of your concerns to your doctor. If you don't feel that they are taking you seriously or listening to your concerns (with any medical issue) find another doctor.
Go to DBlog Day Post Central to list your 6 things...
http://diabetestalkfest.com/blog/?page_id=299&ref=nf
Loved this list, Heather! I cannot believe 3 visits over 8 weeks did not result in a diagnosis :(.
ReplyDeleteInstinct of a mother totally trumps all, so taking her to YOUR mom saved your daughter's life. Wow. Powerful story.