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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Sleepover Update...

 I have been so busy with the new job and the girls that I haven't had any time to write!

So, the sleepover went really, really well. Lily's numbers went from crazy high (580) to perfect all night. The mom checked her frequently, kept in contact with me all night via text, and was just pure awesomeness. Seriously awesome.

I was so thankful that I invited her out for drinks this past week. And I just love her. Adore her. We had so much fun laughing and talking all night. We stayed out too late, drank too much, and became fast friends. She is good people for sure.

And the best part...Lily has a new "BFF." We are reciprocating with a sleepover this Friday so that this little girl can go to the JDRF walk with us. Matt and I are having dinner with their family Friday night first. And...the girls are trick or treating together. I couldn't be happier. Big. Huge. Sigh. Of. Relief. from this D Mama.

What a night that was.

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The Sleepover...

 Tonight is the big night. The sleepover. Aaaaaaccckkkk!!!!

Lily was invited to her first sleepover birthday party and after lots of consideration, a sleepless night, and tons of advice asked from my D friends and D Mamas...I decided to let her go. I spoke with the mother of the child whose party it is and she is happy to check Lily over night. Lily's numbers are never consistent overnight. I just did a basal test over night about a month ago and her basal was fine. Not so much now.

So, we woke up this morning, ate bagels and changed her site. We are still somewhat new to the Animas pump since we switched from the Omnipod and MDI all in this year. I am pushing the site in too hard or something because when I checked Lily about an hour ago...I got a big ol' 508 on the screen. Seriously?? Today?? UGH.

She is still going to the party after a site change, a huge correction, and a waiting it out period to see if she drops.

This is what the Inset looked like when I took it off. Nice. Super duper. Piece of shit disease!

I find myself feeling very envious of the other mothers that are just going to swing on by and drop their children off without a concern of what blood sugars will be doing, carb counting, insulin on board, being checked over night, dropping numbers, etc. etc. etc. She will be fine. Right? She will be fine...

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O.M.G...

 Today is a No D Day, started by Ninjabetic at The B.A.D. Blog, aka George Simmons, and I needed a break today so this is awesome!!

So, last night, we took Lily to Red Lobster because she wanted crab legs to celebrate her special day! I had already decided earlier in the day, and told the girls, that we would be indulging in dessert for our little celebration of a healthy life!

We ate dinner, shared lots of giggles, some great food, a little wine and milk, etc. Once it was dessert time, Lily grabbed the menu and started looking through the pictures. She let out a huge gasp when she looked at the chocolate cake that she had wanted earlier in the day! Look at this picture...

HOLY HELL! Lily couldn't believe how many calories were in this chocolate cake!! Granted...she is more aware of healthy foods than most...and certainly more so than a SEVEN year old, but damn! 1490 calories for a dessert?? So, you count that in addition to the dinner you just had you have probably met TWO days worth of caloric intake for an ADULT. I was flabbergasted (love that word).

The waitress came over and asked what we had decided on. Lily set the menu down and said in a very serious, grown up voice," It is ridiculous and really unhealthy to have a dessert on here that is that bad for you. I will have one small scoop of vanilla ice cream."

I looked at the waitress and said, "We will all have the same." Then, I started giggling. I told her how proud of her I was. She cracks me up! She is so aware of what she puts in her little body and wants to grow into a healthy adult. We talk constantly about how food runs your body, and exercise. I let her indulge on all things but in small amounts. I was totally excited that she made a choice to go with a healthier option all on her own though! So, she and Abby took their time devouring their ice cream and loved every bite!

 Abby

Lily

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Year Four...

 In exactly 43 minutes, it will be Lily's anniversary with diabetes. She was actually hospitalized four years ago today but wasn't given the official diagnoses until October 7th. Some years, this day floats by without a hitch. This year, I sit here in tears, in the dark, in my den. My almost 8 year old is asleep in the room next to me...in my bed. Again. I miscalculated her carbs at lunch and she was high at dinner. So now, I am worried about her numbers overnight and that she might go low. So, I put her in my bed so I can hear her sweet breaths throughout the night. This disease is exhausting. It is all consuming. And it never stops. Ever.

We got home from dinner tonight and Lily was so excited to show me an invitation her new friend at school gave her. She is turning eight next Saturday and invited Lily to a sleepover party. My heart sank. Part of me says to let her go and have fun and be a kid...the other part thinks she is too young, I don't know the parents or the child, and can I keep her safe? So, I am at a crossroads here. My gut is to let her do this and let her be a little girl like the rest of her class. I won't sleep a wink that night and that is okay...but will she be okay? I am pretty sure I will feel this way the entire time she is out from under my roof throughout her life. That in itself is a lot to deal with.

So, I find myself in this dark place every now and again. It doesn't happen often but when it does, I need a good cry and a strong shoulder to lean on. I just need for those around me to understand and to "get it." Life is not all perfect for anyone, diabetes or not. I usually work my ass off to stay positive about our life...it is a great life after all. But guess what? Sometimes diabetes gets the best of me. Sometimes I look at Lily and I just want to literally scoop this disease out of her...and beat the shit out of it. Sometimes I look at her and I think of all of the hurdles she is going to have to face and I want to shield her from it. And I can't. It's life. It's her beautiful, wonderful, imperfect life. The fact that SHE has to live with this forever is what makes me cry. I was staring at her at dinner in amazement at how big she is getting and how smart she is. How beautiful she is. How responsible and mature and loving and sweet. I was playing with her little hand and the tips of her fingers are covered by little holes where I pierce her skin ten times a day. And the severity that I am keeping her alive hits me. And the tears start.

So, we celebrated living a healthy life in spite of diabetes today. I kept it together all day. I was in the shittiest of moods and I didn't know why. I get it now. It hits me sometimes. Plain and simple. It hit me today. It's been four years. Four years of kicking ass and living well. And we will do it again tonight and tomorrow and every day after. I just needed a break to let the emotions flow...



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