Are You Blue?

Today is World Diabetes Day! This day was named as a day of awareness for diabetes. November 14th is also Dr. Banting's birthday, the founder of insulin. So, Happy Birthday to the late Dr. Banting...thanks for keeping my child alive and not giving her a death sentence!

Diabetes rocked our world. Changed it forever. Within a 30 second time frame of hearing that word, diabetes, our world became about numbers. Every thought. Every action. Every breath...literally...became about a number. A number that will keep my child safe and healthy and breathing right next me...living her wonderful, little life.

So, I advocate and make people aware of this disease in hopes of saving other children's lives whose symptoms may go unnoticed. And in hopes of raising money for the research so desperately needed for a cure for my baby and the other 3,000,000 people in our country living with this daily.

Here are the facts, taken from the Juvenile Diabetes Research Foundation's website.

Fact Sheets: Type 1 Diabetes Facts
Type 1 diabetes is an autoimmune disease in which the body's immune system attacks and destroys the insulin-producing cells of the pancreas. While its causes are not yet entirely understood, scientists believe that both genetic factors and environmental triggers are involved.
Affects Children and AdultsType 1 diabetes strikes people at any age. It comes on suddenly, causes dependence on injected or pumped insulin for life, and carries the constant threat of devastating complications.
Needs Constant AttentionTo stay alive, people with type 1 diabetes must take multiple insulin injections daily or continually infuse insulin through a pump. They must also test their blood sugar by pricking their fingers for blood six or more times a day. While trying to balance insulin doses with their food intake and daily activities, people with this form of diabetes still must always be prepared for serious hypoglycemic (low blood sugar) and hyperglycemic (high blood sugar) reactions, both of which can be life-limiting and life threatening.
Not Cured By InsulinWhile insulin injections or infusions allow a person with type 1 to stay alive, they do not cure diabetes, nor do they necessarily prevent the possibility of the disease's devastating effects, which may include: kidney failure, blindness, nerve damage, amputations, heart attack, stroke, and pregnancy complications.
Difficult to Manage Despite paying rigorous attention to maintaining a meal plan and exercise regimen and always injecting the proper amount of insulin, people with type 1 diabetes face many other factors that can adversely affect efforts to tightly control blood sugar levels. These factors include stress, hormonal changes, periods of growth, physical activity, medications, illness/infection, and fatigue.
Statistics

• As many as three million Americans may have type 1 diabetes. 1
• Each year, more than 15,000 children and 15,000 adults - approximately 80 people per day - are diagnosed with type 1 diabetes in the U.S.2

Warning Signs
Warning signs of type 1 diabetes may occur suddenly and include:

• Extreme thirst
• Frequent urination
• Drowsiness or lethargy
• Increased appetite
• Sudden weight loss
• Sudden vision changes
• Sugar in the urine
• Fruity odor on the breath
• Heavy or labored breathing
• Stupor or unconsciousness
  Be aware! Wear blue today in honor of our loved ones!!!

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The Lows...

Another life was lost this week. Another family woke up to the harsh reality that they will never hear their child laugh again. They will never walk her down the aisle or hold her hand in a delivery room. She was gorgeous, glowing, in the picture I saw of her. She was a person, I'm sure, with dreams of a future and many, many plans.

It gets harder and harder for me to talk about diabetes and I don't know what is going on with me. It gets harder and harder to write about it. I keep thinking I need a break but I think the realities of diabetes are just too much at times.

I hear people complain all the time. They complain about how hard their lives are...how much they have to handle around the house and how little time they have. I feel like screaming at them, "wake up and realize how lucky you are and quit bitching! You get to sleep at night without thinking your child might die!" I can't figure out if I am bitter or jealous or just fed up...or just really pissed at diabetes lately. I just don't know.

My life is amazing. My children are amazing. They are the biggest love I have ever known. They are so much bigger than life to me. It's indescribable how I feel when I touch them, smell them, hear them, watch them...they are angels. I have to catch my breath a lot when I just sit back and take them in...my girls. They are the most important thing in my world, without a doubt. You become somewhat selfless when you have a child. Everything shifts inside of you. It's awkward and beautiful and comforting and frightening all at the same time. The thought of losing one is just too much.

Because of that, I check her religiously at night. I monitor her numbers closely. If she is a certain number at 10 or 11, I am up at 1. If she is a certain number at 1, I am up at 3. If she is a certain number at 3, I am up at 5. I monitor how much insulin is working in her system and take into account how many carbs and the type of carbs she ate before bed. I think about what she did during the day...did she play hard and exercise a lot because that can cause a severe low at night, many hours later. Is it cold out? Her body works harder to heat itself up and that makes her lower. Do I need to do a temporary setting (basal) on her pump to ensure she stays a bit higher? Do I need to check her ketones if she is too high? And I am doing all of this thinking in the middle of the night so that my child will wake up in the morning.

Two nights ago, I awoke her at 2 AM to change what I thought was a bad site but it was just a miscalculation of carbs at dinner. But I woke her at 2 AM to shove a needle under her tummy while she cried. I then held her while she fell back asleep. I got up two hours later and two hours after that. Then, I was up at 5:30 AM to go to work.

It's grueling but it is my life. I am used to it. The alternative...DEATH...is just not an option so I do it without complaint. We all do...all of us D Moms and Dads (my ex does the same) out there, the Night Stalkers as I like to say.

I want people to know what goes on in the house of a family with a type 1 diabetic. I want you to know so that you can tell people and they will tell people and the word will spread and maybe, just maybe...a cure will come along in Lily's life. That's all I dream of...every second of every day.


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The Ad...

 I edited this post this morning after I reread my rant. Diabetes hits me hard at times. And reading the statistic on the ad hurt. It hit home. It made me feel sick and cry while I laid in my bed last night. No one wants to hear that their child has any sort of chance of EVER dying. BUT...the point of the ad is to raise awareness and get the Artificial  Pancreas and trust me...it's needed.

November is Diabetes Awareness Month. November 14th is World Diabetes Day. I have done nothing this year and this is the first year that I have ignored everything diabetes related. I have been trying to just live our lives and not let this all-consuming disease consume me. I have always had trouble with the all or nothing thing. If I choose to do something, I can't half do it. Not possible for my personality. So, with diabetes, I made it my world. My everything. My job. My mission. My life. I have trouble separating, or balancing, or whatever.

So, I have taken a break from blogging too. Even the Chronicle blog...right after I started it. I have been on overdrive with a new job...with the girls...with my life. And then, I read an email tonight with the JDRF ad for the Artificial Pancreas and I am pissed. I am seriously pissed off. I don't want to know that 1 in 20 people with Type 1 diabetes is going to die from a low blood sugar. I already don't fucking sleep. None of us do. I am so sick of the focus being on death. I want the Artifical Pancreas JUST LIKE EVERYONE. I want the awareness. I want the FDA to approve it. I don't want to hear that my child has a 1 in 20 chance of dying from going low. I can't hear that. I can't understand that. It is too much pain to deal with...it's too much pressure, too much stress.

I want those statistics to change and that is why I support the JDRF. That's why we walked. That's why I adore my chapter here. Something needs to be done to change that statistic. It can be read in a much less scary way...like 5% of those with type 1 will die from hypoglycemia. The 1 in 20 is much more powerful. But I don't ever want to see that ad again and I want to store it away in the "too scary to think about" part of my brain storage.



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