H1N1 Drama

Here is our Swine Flu time line.  Fortunately, Maddie has not caught it, but hopefully she will not catch it in the future.  I know there is so much drama about any kind of flu shot, or the lack thereof, but this time, I'm a little nervous about it.

August:  Maddie's endocrinologist informs me that she MUST have the H1N1 flu shot.  He also says that it is a "good idea" for the rest of us to get it, since we live in the same home and are her caretakers.

September:  Drama about the H1N1 virus in the media, cases all around NC, and some cases in our school and church, and amongst our friends.  Scientists are furiously working on the vaccine.

October 1:  Vaccine is complete. Ready to be shipped to all health care providers.  The media announces that they are taking all precautions to NOT have a shortage, and are making sure all who need it will get it.

October 5:  In for my 5 year old son's check up, I inquired about the H1N1 vaccine for my "chronically ill child" at the front desk.  I was told that they would receive it at the END of October or BEGINNING of November, and to call around that time and they would put her on a waiting list, but that she would indeed receive it because of her illness.  I also asked the doctor, and was told the same thing--she would definitely get the shot.

October 21, 2:00 p.m.:  Upon entering the office for Maddie's 9 year old check up, I noticed a sign that said "Sorry, we are out of the H1N1 vaccines.  All County Health Departments are out, also."  Surely they don't mean they are completely out because we weren't notified, or put on a list, and Maddie HAS to get one, as do all children with chronic illnesses.

October 21, 2:30 p.m.:  I asked the nurse about Maddie's need for, and her endochrinologist's demand for, her to get the vaccine.  In the same breath, I told her what I had been told at the beginning of the month, and since it wasn't the END of October, I hadn't called.  The nurse's response was, "Sorry~we only got 100 vaccines yesterday and we ran out this morning at 10:00 a.m.  I don't know why you weren't called or notified."  When I asked the doctor the same question, and added, "Why weren't we notified?"  I didn't really get a clear answer.  She just told me to see if the endochrinologist could give Maddie the shot.

Wouldn't he have told me he could give her the vaccine when he first suggested that she get it?

Something doesn't add up......

My MasterCard Commercial

Insurance                                                $7200/year

Insulin Pump                                            $8000

Glucose Monitor                                      $500

Testing Strips                                           $840/year

Insulin                                                      $420/year

Lab Visits                                                 $300/year

Endocrinologist Appointments                    $360/year

Glucose Tablets                                         $100/year



My sweet Maddie Belle        PRICELESS

The What Ifs

If you are a mother, and you’ve ever been told that something was wrong with your child, you probably wondered, “What did I do, or not do, for this to happen??”  As far as type 1 diabetes is concerned, there are many different scenarios on how one “gets” it. 

You can’t “catch” it.  You can’t pick it up from touching a bathroom toilet, you can’t get it from someone sneezing behind you at the movies, and you can’t get it from not washing your hands after you’ve handled raw chicken.  I think life would be a lot easier if we could prevent our kids from getting it. 

Our endocrinologist says that Maddie was predisposed to having diabetes, but that also at some point in time, she got a virus that attacked her immune system, which led to her body attacking her pancreas, then her thyroid (Hashimoto’s Disease), thus reeking auto-immune disease havoc inside her little body.

Hereditarily speaking, (do you like how I just now threw that in there??) there is diabetes in my family.  My sister was diagnosed with type 1 in her late 20’s.  I also remember my grandfather taking insulin and keeping track of his blood sugar, but my mom and sister are starting to think that maybe he had type 2.  Who knows…..  So, evidently, Maddie was set up from the start to someday have diabetes.  It’s in her DNA.  

But, as far as this whole virus thing, well, there were a few years in there (before I had my boys) when life wasn’t so chaotic, and I actually had time to be a neat and organized  mom.  There were several times when she was 2 or 3 years old, that I remember Maddie having a fever for a couple of days.  I remember being baffled because she didn’t have a sore throat, her ears didn’t hurt, she wasn’t throwing up, and there was no rash anywhere on her body.  She was acting fine, she was just burning up.

There would be the “chicken pox scare of VBS 2003” or the “fifths disease scare of toddler 2’s Sunday school 2001”.  I would periodically get the emails and phone calls from my friends saying that “so-and-so’s child has a rash” or “such-and-such is broken out all over his hands, feet, and mouth”, and my personal favorite, “such-and-such spent all night cleaning up throw up from so-and-so’s stomach bug”.  Fortunately, somehow, Maddie steered clear of all of those icky air born illnesses. 

There was a time when I may have slightly bragged about Maddie not ever really getting very sick.  She had the occasional ear infection, or runny nose, but she was never down for more than half a day or so.  And when she was, as a good first-time-mom, I always rushed her to the doctor to get medicine, not only so that she wouldn’t feel miserable, but also because I valued my sleep and didn’t want to mess up the great schedule that she was on. 

But I can’t help but think that one of those mysterious fevers when she was very little may have been “the one” that did all the auto-immune damage.  The pediatrician would say, “Marcie, it’s just a fever.  She checks out okay, so just treat it with over the counter medicine.”  So I did.  Children’s Tylenol and Children’s Ibuprofen were my best friends.

When she was diagnosed at 5, the endocrinologist said that judging from her terrible A1C score, (14.2~yikes!!) she probably had had diabetes (undiagnosed) for about 2 years or so.  My response was “Whaaaaaat?” 

Yep, that’s right.  For TWO whole years, my child lived with an undiagnosed chronic illness, without my knowledge, as I fed her all of the foods that she is NOT supposed to indulge in without some sort of insulin injection.  Nice, huh? 

I try to concentrate every day on how healthy Maddie is today, and how blessed we are to have her on her pump.  How she has more energy than myself and Shawn put together, how sweet, beautiful, and smart she is, and how she has so many friends that love being around her.  I can’t help but wonder about all of the “what ifs” but I guess I’ll never know….. 

Diabetes Makes You Prettier

Something that's a big deal to me is making sure my kids have good self esteem and a positive self image.  From the day they could understand me, I have told them how handsome and beautiful they are.  I'm always telling Reilly (my 5 year old son) what big muscles he has, and what a great soccer player he is.  Maddie has always been told how beautiful she is, and how smart and creative she is.  I think we all need a little encouragement every now and then. 

Ok, so this whole diabetes thing did a number on Maddie.  From the time she was diagnosed at the age of 5, she has experienced a touch of depression, embarrassment, anxiety, and so many other negative feelings that sometimes accompany the diagnosis of a chronic disease.  I can't say that I know how she feels.  Because I don't.  I don't have diabetes.  I don't have to check my blood in front of my peers.  I don't have people asking me if I feel low.  I don't have friends that tell me I can't eat something.

So from the very day she was diagnosed, I have told Maddie that diabetes makes her prettier.  Because I believe it does.  I tell her that there's no way in the world that she would have been this pretty if she didn't have diabetes.

I tell her it does something to her hair and skin.  I tell her that it makes her eyes a brighter green.  It makes her skin a more beautiful shade of tan.  It gives her eyelashes a tiny bit of extra length.  It puts beautiful blond highlights around her face.  It makes her teeth a little whiter and straighter.  It makes her voice sweeter and softer.  It makes her prettier.  Because I think it does.

My dad has said something to Maddie since she was a year old.  He has said it to her ever since then, and he says it quite frequently.

"Maddie, come here to your Grampa."  Maddie is the only granddaughter of 6 grandchildren.  She has her Grampa wrapped around her finger.  It is not uncommon after she is told "no" to hear her mumble under her breath, "Well, Grampa will get it for me."

Maddie walks over to my dad's open embrace, as he puts his face right up to hers, so as to tell her a secret.  "I have a pretty important question to ask you."

"What is it, Grampa?"  She always acts like she doesn't have any idea what he's going to say.

My dad gets this serious look on his face and asks her the same question every time.  "How did you get so pretty in just 8 years?"  He inserts her current age at that moment.  He is usually tickling her, or hugging her by this point.  She just laughs and shakes her head and tries to get away from his firm grip on her tiny little body.

She manages to get "I don't know" out as he's tickling her and as they're both laughing out loud.  I tried for years to get her to say, "From my mama," but she would never say it.

Now I know how she got that way......it's because diabetes has made her prettier.

Funny, Yet So True

I read this article on a great website: www.juvenation.org

It is funny, but at the same time, it shows how little people know about diabetes. According to www.JDRF.org as many as 3 million Americans may have Type 1 Diabetes, and each year more than 15,000 children are diagnosed with diabetes in the U.S. That's 40 children per day. Scary....

Anyhoo, Maddie and I read this together, and we had a couple of good laughs....

STUPID THINGS PEOPLE SAY
A constant source of frustration for people with type 1 diabetes is annoying questions or comments from well-meaning but ill-informed people. Here are some of our favorites:

"Does it hurt?"
Of course poking myself with a needle hurts sometimes, and you never really get used to it no matter how long you have had diabetes.

"You can't eat that--You have diabetes!"
I know what I can and can't eat! Limiting sweets can help me keep my blood sugar under control, but as long as I adjust my insulin, I can eat them just like people without diabetes.

"Do you think you should eat something?"
I appreciate your concern, but I've been living with type 1 diabetes for some time now. Unless I've already asked you to watch me for specific symptoms and remind me to eat, I can decide when and what to eat on my own.

"Did you get diabetes because you at too much sugar?"
Eating too much sugar is not a cause of type 1 diabetes. I didn't do anything to cause my diabetes.

"I know all about diabetes, so here's what you need to do...."
Just because you're older than me or have more education doesn't mean you know more than I do about diabetes. I've been living with this disease for many years, so don't you think I know more about it than you?

"You're so skinny, how could you have diabetes?"
Obesity can be a trigger for Type 2 Diabetes, but it has NOTHING to do with type 1.

**my personal favorite**
"I have type 2 diabetes, so I know how you feel."
No, you don't. People with type 2 diabetes may be able to control their disease with diet and exercise alone, or with oral medication. Type 1 diabetics have to inject insulin constantly.

"Insulin can cure diabetes, right?"
Taking insulin keeps people with type 1 diabetes alive, but dies not cure the disease. While progress has been made, there still is no cure for diabetes.

"How come your blood sugar is always too hight or too low? Are you doing something wrong?"
Many factors can easily cause my blood sugars to swing out of control no matter how well I follow my meal plan and insulin schedule. It does not mean I've done something wrong.

Can't you get rid of your diabetes if you just exercise and eat right?"
If I could, don't you think I would have done that by now? Type 1 Diabetes is not caused by a poor diet, obesity, or lack of exercise. Those are factors associated with type 2 diabetes. Exercise and a good diet can help me to better control my type 1 diabetes, but they do not make it go away.


Being that Maddie is a child, with friends who are also children, she gets these questions and ones similar, all the time. She knows that she just needs to explain that her pancreas doesn't work, so her pump takes the place of it. God gives certain people patience for a reason. Maddie has become a very patient little girl.