Never Give Up!!

We have talked to many people about type 1 diabetes. Some have no idea what it is and others deal with it everyday. I cannot tell how different people can be about this one disease!

After 8 years I still get shocked by people's reactions. The ones that shock me the most are the ones that have accepted this disease as a way of life. I have had one mother tell me that basically why worry about a cure. It's already too late for our teenage daughters. WHAT???? Are you kidding me? But then I think that these people may like the attention of having this disease. We are not that way. We want this thing out of our lives forever!

We want Shanie to never have to think about her blood sugar or how many carbs she can eat! We never want her to lose sleep because she is correcting lows all night long. Or like last night we had to change her pump at 4:30am. We never want her to be irritable when her numbers are high (because she is such a sweet loving girl and that is not her, that is the disease). We never want her to be thirsty or have to go to the bathroom all the time because of highs. We don't want her to feel weak and shaky from lows and have to stop what she is doing until she brings her numbers up. We want her to be free from needles and tubes. She does her best not to let this disease slow her down, but sadly since we don't have the control, it has in fact stopped her in her tracks. No matter what you do, it can knock you down at any time! And because we know this is the reality of this disease WE WILL NEVER EVER GIVE UP HOPE FOR A CURE! That is the power we have over this disease! :-)

We know there will be a day when Shanie can say, "I used to have type 1 diabetes!!"

For the past several years we have been supporting Dr. Faustman and her team. Here is some info on what she is working on.

In 2003, after over a decade of work, Dr. Faustman became the first person to cure diabetes in naturally diabetic mice. This was not a treatment, like injecting islet cells or transplanting a pancreas. Dr. Faustman’s mice had a genetic disorder that caused them to develop diabetes naturally. Once her mice reached old age (about a year in mice time), she treated them with a two-drug combination to kill the defective t-cells that were destroying their insulin producing function. The stunning result: the mice regrew their beta cells and began naturally producing insulin again! This experiment has been repeated and verified independently by a half dozen labs since.  In the past, there have been many false alarms on the “mouse cure” front. Treatments have been sold as cures or a reported cure was unable to be repeated. This is the real deal. The mice had diabetes into their old age, and this treatment cured them. Other labs have verified the results.

Now, on to people!
Dr. Faustman is now in the middle of a stage 1 clinical trial to test this technique in humans. Using special blood-testing equipment that’s taken years and millions of dollars to develop, her team is measuring whether the BCG vaccine is able to measurably reduce the number of defective t-cells.

Support Dr. Faustman’s Research
These clinical trials are 100% self-funded. Because the BCG vaccine is not patented and can be used by anyone, the pharmaceutical companies will not fund these studies. It is up to us to ensure that this moves forward as quickly as possible.

Thanksgiving!

As we all know Thanksgiving is about spending time with family, watching football, and of course FOOD! 

As most of us just pile our plates high with all of our favorite foods, and yes, go maybe go back for 2nds and sometimes even 3rds. LOL! And let's not forget about all the desserts! How many of you are keeping track of the carbs you are eating?? Probably none of you...unless you are a type 1 diabetic.

We had two Thanksgivings in two days. And with all the yummy foods and all the yummy desserts, Shanie still had to count how many carbs she ate. Actually she really had to "guess" since it is hard to find the exact carb count for everything. And she still had to test her blood sugar many times. More than normal due to her having to "guess", because she could guess wrong and either go high or low. She did go low both days. On one of the days she tested once in front of her little cousin, and then she of course had to test again later and her little cousin said, "You have to do that again?"  

Then yesterday while eating with her great grandfather, which he is type 2, he kept saying that he was taking the day off from diabetes. With him being 89 years old, he will never fully understand what Shanie has to go through. And sadly for our baby girl and everyone else with type 1, they can NEVER EVER take a day off from type 1! The closest she gets to "taking a day off" would be that she doesn't have to keep her carbs under 250 grams and she can bolus more than 5 times if she wants. The funny thing about that is she still stayed under 250 grams and she didn't even bolus 5 times. :-) We try to give her as much freedom as we can on holidays, but she still has to keep fighting that monster!

What's in a name????

Each year we do the Walk to Cure Diabetes. At these walks everyone has team names. We wanted a team name that was different and meant something to us. Shanie is a HUGE Tim Burton fan and so of course The Nightmare Before Christmas is one of her all time favorite movies.

I think it was at the age of 11, and with Shanie being the creative nut that she is, she drew a picture of Sally with her arm off and needles sticking in her arm. Those of you that have seen the movie will understand the arm being off. :-)  

So we decided that this would be the picture to go on the back of her team shirts for the walks. She also drew a little girl with a "thinking" bubble above her head. So we put that on the front of her shirts. And now for the name......

I came up with Shanie's Dream Team. I figured the little girl on the front was dreaming of a cure. And the family and friends that join us each year to help us raise money are for sure the best! And with the best team, we have the famous "Dream Team". So this is who we feel help us with this fight. Shanie's Dream Team. Shanie came up with "The Nightmare Before The Cure". Again, huge Tim Burton fan. This was no surprise. But it all tied in together. She had the little girl on the front dreaming of a cure with her Dream Team helping her fight, and of course for those that live with this disease, it is for sure without a doubt a nightmare!

So Shanie's Dream Team was born! And right now Shanie is living the nightmare before the cure!

Happy Holidays with type 1 diabetes....NOT!

So it is that time of year again! Everyone's growing excitement for the holidays!

I know we are like all other families with planning holiday get togethers with family and decorating the house and shopping for Christmas! Everyone is so busy, rushing around, and we are no different. With the exception of one thing. During this time of year you have the festive Christmas music playing in all the stores, the Thanksgiving feasts everyone is preparing for, the travel arrangements you are making, the Christmas gifts you are buying, it is such a joyous time of year.

BUT as we have found the past 9 holiday seasons we have had one extra thing to worry about, Type 1 Diabetes. This disease never takes a break and sometimes with all the excitement it can be harder to fight. Shanie's blood sugar is determined by a number of things. Stress and excitement are just two of these things. So as you can imagine just like all other kids she gets very excited for the holidays. So this can make her blood sugar go all over.

So during all the hussle and bussle and excitement of the holiday festivities, we still have to make sure she is testing enough and she is still counting her carbs. I know everyone is focusing on the joys and excitement of the holidays, as are we, but sadly for our baby girl, type 1 diabetes does not take a break during the fun filled holidays. She still has to fight for her life everyday of the year, including Thanksgiving and Christmas.

Dead in Bed Syndrome

Thursday night I received some heartbreaking news. I found out that a 17 year old girl with type 1 diabetes died in her sleep due to the fact that her blood sugar dropped too low and it did not wake her up. I of course lost it and started crying. I don't know this girl or her family, but I can imagine what they are all going through. This is every parents worst nightmare. Every time I think about this I start to cry. As you can imagine it hit way too close to home for me. My baby girl is 15 and we know she has a deadly disease, but for the most part we try to keep the reality of this disease in the background so that we can deal with this disease 24/7. We get into a routine and sometimes get a little false sense of security when things are going well. Sadly when we hear something like this, it not only breaks our hearts, it makes us remember how deadly this disease is that is trying to kill our daughter. And at any moment that can be her! :-(

We have an amazing daughter and bless her heart, when she goes low at night she won't wake me up because she doesn't want to bother me. So she takes care of her correction on her own. I don't want her to ever be alone fighting this disease. Since she won't wake me up I have been setting my alarm all week to wake up a few times during the night to test her. Then I find out that this happened. Of course I am beyond paranoid right now! I do not want her to really know what happened because I don't want her to be worried. That is my job! But as she gets older it is harder and harder to shield her from the reality of this.


What happened to this young girl is often referred to as ‘dead in bed syndrome,’ and its cause is not known. However, it is responsible for approximately 6% of diabetes-related deaths in individuals age 40 or younger. The scariest part is that ‘dead in bed syndrome’ is not necessarily linked to poor blood sugar control, or extreme circumstances. In fact, in most cases the person appears to be perfectly fine the night before and goes to bed, but never wakes up.
Shanie asked me about this a few months ago and I tried to reassure her that she didn't have to worry about this. But how can I keep her from worrying about something that could really happen to her?


These are the moments when I absolutely 1000% positively HATE this disease! How do you protect your child from a monster that you can't see or stop? That is why I will NEVER EVER stop talking about this. If my baby girl has to fight this disease 24/7 than I will tell people about it 24/7!

PLEASE PLEASE understand how important it is for a cure! Seriously, this is a deadly disease!!

Type 1 vs. Type 2

I will admit that I do not know all there is to know about Type 2 diabetes. I do have family members with type 2, but I do not live with it or with anyone that has it. So I won't pretend to know about type 2. But I do live with someone that has type 1, so I do know about that! And what I can tell you is what people say about comparing type1 to type 2. So I will tell you some differences.


Type 1 is an autoimmune disease in which the body attacks itself and kills off all the insulin producing cells. The pancreas produces no insulin at all!

Type 2 is a disorder in which the body either does not produce enough insulin or the body is resistant to the insulin that it is making.

Type 1 will NEVER EVER go away no matter what you do!

Type 2 can go away.

Type 1 diabetics have to live on life support. Weather it is through multiple daily injections of insulin or being connected to an insulin pump 24/7. This is how they stay alive. This is their life support. LIFESUPPORT IS NOT A CURE! Until their bodies produce insulin on it's own and they no longer have to inject insulin, A CURE IS NEEDED!

Type 2 diabetics can take a pill to help their bodies use insulin correctly. Some may have to also give injections of insulin for a time, but this is not their life support. And just because they may have to give themselves shots, DOES NOT MAKE THEM TYPE 1! They are still type 2 and it can still go away!

Type 1 diabetics can eat ANYTHING others without type 1 can eat. The only difference is that they have to act as their pancreas with putting in enough insulin to cover what they eat. CARBS, NOT SUGAR, is what they have to watch. A piece of bread is just as dangerous as a piece of candy. They count the carbs, not sugar. And sugar can actually save their life sometimes! :-)

Type 2 diabetics I heard are supposed to watch their sugar.


Anyone that says they are cured from type 1, as Haley Berry said she went from type 1 to type 2, is ignorant and NEVER had type 1. No crazy insane diet can make it go away. Shanie can eat nothing all day long and her blood sugar can still be high! So do not believe in any miracle diet! Trust me, parents of type 1 children would love more than anything in this world for their children not to suffer!

So what do I want you to take away from this? Please do not compare the two. The only thing they have in common is that they both have to do with insulin. But they are not the same beyond that in any way shape or form. And one last thing, please DO NOT try to tell a type 1 diabetic what they should or should not do or eat. They know their disease, and unless you are living with it, you don't know what they have to do. :-)

A Mother's Promise

A Poem in memory for the author, for all the children with diabetes.
A Mother's Promise was written by Gary Hempleman. He had diabetes for 35 years and passed away Dec. 14th, 2002 at the age of 45.

She walks down the hallway in silence so deep,
Keeping watch over him, as her little one sleeps.
With meter in hand, she opens his door,
Making sure not to wake him as she crosses the floor.
She sits on his bedside and brushes his hair,
As he dreams of shooting baskets, without a 'D' care.
She holds his hand softly; his fingers so small,
As she watches and wonders why 'D' came to call.
While she watches him sleeping, so peaceful and warm,
The forces inside him fight a constant 'D' storm.
Will he ever be free of shots and blood testing?
She sits and she wonders as she watches him resting.
The beep of the meter breaks the silence of the night,
A small drop of blood tells if everything's right.
The seconds count down to the final display,
I hate this damn meter; I want to throw it away.
The number is fine, one down, a lifetime to go,
As he turns in his sleep, will he ever know?
Why does this 'D' happen to someone so small?
My son is my hero, but my baby most of all.
She turns at his doorway, looking back one more time,
It's a nightly routine of the very worst kind.
She walks down the hallway and time passes by,
As she sits in the dark, silent, and quietly cries.
I have to stay strong, and for him I will fight,
We'll battle this 'D' with all of our might.
I'll teach him to master and conquer this foe,
This 'D' will not stop him, I promised him so.

JDRF Walk 2011

This past Saturday Shanie's Dream Team did the JDRF Walk to Cure Diabetes. This is an event we do once a year, where we raise money and walk with hundreds of others. Shanie has lots of family and friends that join her team and help us raise money and walk with us early that morning. She loves to see the people that love and support her walking with her. :-)  Thank you to all that donated and walked with us! It means more to us than you will ever know!

Type 1 Diabetes in a nutshell

A healthy pancreas produces insulin, a hormone that the body uses to change glucose in the blood into energy. Glucose in the blood comes from the food and drink a person consumes.
In people without diabetes, the pancreas maintains a "perfect balance" between food intake and insulin. When a person eats, the pancreas puts out the exact amount of insulin needed to turn the glucose into energy. If the person eats a lot, the pancreas puts out a lot of insulin. If the person eats just a little, the pancreas puts out just a little insulin.

A person with type 1 diabetes doesn't produce any insulin. Without insulin, the glucose builds up in the blood, causing high blood sugar, or hyperglycemia. Very high blood sugars for an extended period of time can eventually lead to coma and death. We found this out with Shanie to be just about 6 hours! :-( She went into a coma after going about 8 hours with no insulin!

Since people with type 1 diabetes can't produce their own insulin, they must put insulin into the bloodstream through injections or an insulin pump. To know how much insulin they need, they have to check their blood sugar level throughout the day and keep track of what they eat.

For people with type 1 diabetes, balancing insulin and food intake can be a difficult formula. Too much insulin in the bloodstream can lead to a hypoglycemic reaction. Hypoglycemia (low blood sugar) is a common problem in people with diabetes. It can be very serious and people with type 1 diabetes often struggle to determine how much insulin to give themselves.

In a simple and perfect world, this question would have an easy answer (e.g., always eat a certain amount of food and inject a certain amount of insulin). However, in reality there is no way to know how much insulin to administer with 100% accuracy.

Many factors influence how much insulin people need to get to the desired "perfect balance" of glucose and insulin. These factors include foods with different absorption rates as well as the effects of stress, illness, and exercise. Since determining how much insulin the body needs to "balance" the amount of glucose is really a best guess, sometimes the guess is inaccurate and high or low blood sugar results.

High blood sugar levels over a number of years can cause serious damage to the body's organ systems. This damage may cause complications affecting the heart, nerves, kidneys, eyes, and other parts of the body. However, careful monitoring could greatly reduce the threat of these complications.

Researchers are also making progress at developing new treatments and technologies to help people with diabetes stay healthy. It's important to remember that people with diabetes can lead active and productive lives, just like anyone else.

It's also important to know that diabetes is not contagious. You cannot catch diabetes from someone who has it. We don't know how type 1 diabetes happens. Researchers continue to study how and why type 1 diabetes occurs in certain children and families. Because at this time, no one knows!