A trunkful of diabetes... an Easter full of smiles

Easter Sunday and I feel compelled to write something profound, inspirational. I'm not sure if this counts, but it made my day.

Today I watched Sarah be a kid, all day. She's eleven, so she's always a kid. But today for some reason it struck me how innocent she is, and how carefree she is, even given the challenge of her diabetes.

She was THRILLED to wake up this morning and find an Easter basket waiting for her. She plowed through, enjoying every part of her surprise. After the basket was emptied, she scurried around the house hunting (plastic) Easter eggs with her sister (such a good sport, at 20). The smile on her face was the truest, most beautiful thing I've ever seen - and it lasted the entire day!

After the egg hunt, she really wanted to decorate eggs - which we didn't have time for yesterday. So we boiled eggs and she and her sister got extra creative and used crayons to write messages on the eggs, and then tie dyed them in a variety of bright colors, adding stickers for extra pizazz.

She measured milk, sugar, cream and vanilla and helped me to make our first batch of homemade ice cream (which was magically delicious by the way).

All day we checked her blood sugar probably at least every two hours, but somehow the experiences seemed lost as soon as they were over, and I found myself almost forgetting about the diabetes for a time as I just enjoyed watching my beautiful daughter's smile.

At grammy's house she got another Easter basket, including a fun little coloring book, and she made this for me.

After dinner, with only a little prodding, she sang several songs for us including Button up Your Overcoat, Where is Love, Cockeyed Optimist, I Enjoy Being a Girl, and I Whistle a Happy Tune. She danced and sang and acted out her parts.

All in all we had a great day, as we often do, and diabetes sat in the trunk with a gag over his mouth and instructions to keep QUIET. We gave him potatoes. We gave him french fries. We gave him ice cream and chocolate. But he sat quietly and behaved through it all - and let my Sarah have a wonderful day.

I sheared my sheeps coat and sharpened my canines

I've been following the instructions of my healthcare provider since - well, way before I can remember. In fact, my first memory of healthcare is going in for regular allergy shots. A big burly man used to give them to me, and when I was six, he told me I needed to memorize my healthcare ID number. So I did. And since then I've done pretty much whatever they told me to do. Until today...when I had an epiphany.

Oh yeah... they work for me!

So somewhere along the line I elevated those healthcare professionals to the status of Gods, or at least college professors. Yes doctor. Yes doctor. Yes doctor.

Until today.

Today I decided that my daughter needs absolutely every advantage medical science can give her. That if even a slightly better A1c or standard deviation in her blood sugar means she can live longer without complications, then I'm going to give that to her. And Kaiser was just not gonna tell me no this time!

Except they did. They don't approve CGM's (Continuous Glucose Monitors) for kids under age 18, unless "medically necessary" - which is basically defined as out of control blood sugars. We don't qualify, even though everything I read indicates that a CGM can have a positive impact on control, and reduce episodes of hypoglycemia. And there's an added benefit that it would allow me to SLEEP!

So, as I was sitting at my desk today reading through the most boring material imaginable, it occurred to me that just because I have Kaiser as my provider, doesn't necessarily mean I have to stick with Kaiser. Healthcare is a commodity. Doctors are selling a service. DUH!

So I called a different doctor. Way WAY out of network... I called Sutter and asked to speak with their pediatric endocrynology department. I asked the nurse there if they prescribe CGM's to young patients with diabetes - and they do! I asked if I could come in and see the doctor and get a prescription for a CGM. And I can!

So Tuesday afternoon, Sarah and I will embark on our first experience outside of the Kaiser network. She'll be seen by a new doctor, who has already indicated he'll prescribe a CGM. I'll leave with a golden ticket to take to Dexcom. And hopefully within the next few weeks, we'll have our very own CGM.

Tonight I am definitely not feeling sheepish. Ha. I'm totally howling at the moon. Nipping at their heels. I feel like a warrior mama!

That helpless feeling

There are some blogs that make light of diabetes with cute antidotes and cartoons. I love them! I absolutely, positively can not wait for the day I can laugh at diabetes.

Today is not that day.

Today I am mad that I had to:

• Forcefeed my child when she wasn't hungry
• Poke her (multiple times) when she already felt yucky
• And threaten her with a big needle to convince her to eat

Right now Sarah should be finishing up her

ginormous plate of Sushi

But instead we're sitting at home.

She's holding her sore tummy and I'm holding my breath.

Please...

do...

not...

get...

SICK!!!

A message from Sarah (Sarah's first blog post!)

Hi. My name is Sarah. I'm my mama's daughter. This week my school had a jog-a-thon and I didn't do it because my insulin pump clip was broken. So I had to stay in another classroom (third grade). The teacher was talking to the students about sugar. Some student asked the teacher about juvenile diabetes. The teacher replied "Well, I used to give a kid insulin shots. You can die easily from juvenile diabetes". And I thought, "No, you can not!"


I have been living with type 1 diabetes for over a year and I haven't died. And I plan to live to be at least 100 years old. I know this man that my mom has been talking about and he has been living with type 1 diabetes for over 65 years! And he is in good health.

So what we're going to do now is a whole presentation to the staff at my school about type 1 diabetes. Even though there are three kids with type 1 diabetes at my school, the teachers still don't understand type 1. I am excited that my mom and I are going to actually talk in front of the whole staff and teach them about living with type 1 diabetes.



People need to understand type 1 diabetes because it's not the same thing as type 2 diabetes. I'm not overweight, and I certainly do not need a new diet. I have not changed my diet since I was diagnosed. The only thing I cannot eat is poison, and cookies....made with poison (I totally love that video!). So, I can pretty much eat whatever I want as long as I test my blood sugar before I eat and take insulin.

I want people to know that it's not easy to die from type 1 diabetes, as long as you take care of yourself and keep control of your blood sugar. I test myself at mealtimes and snacktimes, and I give myself insulin and..... EAT! I eat healthy and try not to graze or overeat. I always listen to my body, and if I don't feel right, I test my blood sugar. Sometimes if my blood sugar is low I feel shaky and dizzy. And if my blood sugar is high I have a headache. If my blood sugar is low - like under 70 - , I eat a marshmallow (yum!) and wait 15 minutes to test again. If my blood sugar is high I correct myself with a dose of insulin. If it's high at night, my mom takes care of me by testing me while I sleep and giving me insulin when I need it. My mom is so caring, wise and supportive. I couldn't have asked for a better one.



If you think I'm lucky that I get to eat marshmallows, I'm not because I still have to live with shots and testing my blood. People who don't have type 1 can eat a marshmallow just to eat it - but for me, it's actually medicine.

I really have learned a lot since my diagnosis and I will try to be as supportive as I can to other kids living with type 1 diabetes. :-)



Me and my friend Megan having a blood sugar contest (fun!)



I'm such a proud mama!!!

I have never been so proud of Sarah as I am tonight.

Tonight Sarah and I met with a family to provide a newly diagnosed seven year old with his Bag of Hope. Little Tyler was so excited to finally get his Rufus! Sarah, who is often very shy when meeting new people, was positively amazing as she described in vivid detail her experiences with diabetes.

Sarah described in detail how she feels when she's low, her positive and negative experiences in school, and how her friends help her take care of herself. She described how she handles testing in school, experiences with teachers and substitutes, and advocating in Washington DC. She was articulate, positive, and really showed her great attitude towards staying healthy.

We brought with us, in addition to the Bag of Hope, Richard Vaughn's book - Beating the Odds - 64 Years of Diabetic Health. Even though Sarah has never met Richard, she actually remembered enough of his stories (which I've shared over the last few months), to articulate how early diabetic life was for Richard, and how he's lived successfully with type 1 diabetes for so many years.

Sarah is a better mentor than I could ever be. She lives diabetes 24 hours a day and somehow never lets it get her down. She rolls with the punches, takes the humor wherever she finds it, and is an amazing advocate for LIVING with diabetes - because Sarah lives every day to its absolute fullest.

Sarah, you're hired! Tell ya what, I'll pay you in marshmallows - 2-3 times a week until you're sick of them. But seriously, you're going places kiddo. With that attitude, the sky's not even going to limit your potential.

Love you baby!!!

Readers Digest finds the cure! NOT!

Today the DOC (Diabetic Online Community) got together again to communicate en mass. This has happened countless times in the 13 months I've been an active member. In this case, Readers Digest, a publication I've been reading since I was a child (my Grandfather bought me a continuing subscription for years, so I have a real fondness for this publication) printed an article in which the front cover page claims that healthy eating habits and physical activity can reverse diabetes.

The issue is this. Most people know very little about diabetes. Most people don't know that there's more than one type, what causes diabetes, or how it's treated. If people know anything, they think that diabetes is caused by lifestyle choices; i.e. obesity and inactivity. This couldn't be more inaccurate (it's not even wholly accurate for type 2). Type 1 diabetes, which affects approximately 5% of people living with diabetes, is an autoimmune disease in which the immune system destroys the insulin producing cells in the pancreas. Guess what, you need insulin to live. You can't replace insulin with exercise or healthier eating. In fact, just to make the point...

If Sarah wants to eat a serving of peas, she requires a unit of insulin.

It doesn't matter if the innards of the article explain that the article refers to type 2, the damage is done. Most people don't read beyond the cover - and those of us who have children, friends, loved ones living with type 1 diabetes are incredibly tired of people telling us that we can "reverse" it. And now they have more fuel. I can hear it now, "didn't you read Readers Digest? All Sarah needs to do is eat better and be more active". And anybody who knows my child knows that she's about as active as they come. And except for a love of ice cream and chocolate, she eats better than pretty much any kid I've ever met.

So I would urge my friends and family to not be fooled by anyone claiming a cure for diabetes, type 1 or type 2, because while diet and exercise may "reverse" the high blood-sugars in some type 2 diabetics, it doesn't cure type 1. And, while I'm spouting off, may I say that I'm also angry on behalf of the type 2 diabetics who DO eat right, and DO exercise and STILL have high blood-sugars.

A little knowledge, a little research, and a little sensitivity go a long way... RD, please get with the program.

If anyone would like to contact Readers Digest directly, the email address is: letters@readersdigest.com


Here's my letter:
 
Dear Readers Digest,
 
I've been reading your publication for more than thirty years. My Grandfather bought me a subscription while I was in elementary school, and I loved it. Every year on my birthday he renewed, and I loved reading the articles, short stories, and funny quotes. My Grandfather had type 2 diabetes, as do many other members of my family.
 
In your May article, you boldly claim the ability to "Reverse Diabetes" through diet and exercise. While the article itself may clarify this, you know as well as anyone that many/most people read the front page and move on.
 
My daughter is a vivacious, energetic, beautiful, talented eleven year old girl living with type 1 diabetes. She wears an insulin pump 24-hours per day; it keeps her alive. She pokes herself to check her blood sugar up to 10 times each day - and yes, it does hurt her. She has to count every single carbohydrate she puts into her body, even those in healthy foods like peas, carrots, and soy beans.
 
The reason your cover page makes me angry is that there's a definite stigma to having diabetes. Most people don't know what type 1 diabetes is, and assume that all people with diabetes have it as a result of lifestyle choices. In our family, this couldn't be more untrue.
 
I implore you to make a bold correction to clarify this misinformation. Better yet, maybe next month's issue could focus on educating the public on the different types of diabetes, their causes, symptoms, and treatments.
 
Thank you,
 
Michelle Gonzalez