Wednesday, April 8, 2009

An FYI post for you...

I am going to do my best to be tactful in this post; however, since I have come across some very tactless people lately, this post may reflect my current emotions--aka annoyed. I will try to discuss these touchy topics in a way that is pleasant to read. I also currently have a drippy nose, head congested, sore throat bug. You know the kind where you blow your nose every 2 minutes and you still can't breathe! I'm sure it has something to do with me being easily irritated. Please take no offense. :-)

First: If you don't understand something about Type 1 Diabetes, please ask. Do not assume things about the disease and please do not try to compare it to Type 2 diabetes or insulin resistance or pre-diabetes. Type 1 has almost nothing in common with the others. Most doctors I've talked to concur that Type 1 Diabetes should have a different name so it is not lumped in the same category. It is Oh! So! Different!

Second: Sydney did not get Type 1 diabetes from eating too much sugar. You'd be surprised how often I've been asked, "Oh you must have fed her a lot of junk/sugar." No, this is not accurate. Type 1 diabetes is an auto-immune disease. It is triggered by a virus that tells your body to destroy the insulin-producing beta cells in the pancreas. Once these are destroyed, they cannot be repaired. Word association is powerful...people hear "diabetes" and they assume it is similar to Type 2. It is not. Here are a few examples of other auto immune disorders: Lupus, Multiple Sclerosis, Rheumatoid Arthritis, Celiac Disease, Graves Disease. Type 1 diabetes falls into this genre of disease. Most people don't realize this.

Third: Sydney does not/did not have a weight problem that triggered her diabetes. Sydney has always been petite. She was actually under weight at diagnosis because her body was starving itself. It didn't have insulin to transport food to the cells and she was, in essence, starving to death. Without treatment she would have died within a couple of months.

Fourth: Type 1 cannot be controlled by diet alone and there is no cure. Her body cannot produce insulin; therefore, we have to do it manually and much less efficiently. Without insulin she would die. Everyone has to have insulin to survive...if your body doesn't make it, you have to provide it--end of story.

Fifth: The hard truth is that so much can affect blood sugar levels. I could feed Sydney the exact same thing three days in a row and get completely different readings all three days. Why is this you ask? Because so much affects sugar levels such as: activity, inactivity, sickness, stress, hormones, weather, ect ect. You can be doing everything right and still have crazy blood sugars. When a Type 1 diabetic has an off day, it may not have anything to do with human error...it's just the nature of the disease. You cannot control Type 1 Diabetes 100% of the time.

Sixth: Sugar actually has little to do with blood glucose levels. Carbohydrates affect blood sugar levels. (I didn't realize this until after Syd was diagnosed.) I've been asked if cutting out carbs will help. Without carbs, her sugars would drop too low and it would kill her. Carbs are a necessity--not optional. She follows the typical healthy diet all of us are advised to follow. She eats lots of fruits and veggies. We try to keep her carbs around 40-50 per meal. Snacks are usually 12-15 carbs unless she has high sugars then we give a no-carb snack until she is "normal" again. How do we do this? We count every cracker she eats. We weigh her portions and we do our best to give an educated guess if we don't know the carbs. Even doing this won't ensure great readings. That's why I say things are volatile...so many factors affect this disease. There are great resources to help count carbs and, after a while, you just learn the carb count for certain foods. It gets a little monotonous but it becomes routine, like brushing your teeth. Examples of carb counting estimates: 5 ritz crackers = 10 carbs. 1 corn dog = 19 carbs. 5 chicken nuggets = 15 carbs. 2 TBL peanut butter= 7 carbs. 17 grapes = 15 carbs

Finally, we get asked all the time how a person gets Type 1. The most recent research suggests that a person is pre-disposed somehow either genetically or environmentally. This "trigger" is sitting dormant in the body until a virus tells the body to attack and destroy the insulin-producing cells. Her own immune system actually attacked and destroyed these insulin-producing cells. Once this chain reaction is set into motion, you can't stop it. My friend told me something interesting once. When Syd got sick we lived in a little town home community with oodles of kids. If one kid got sick, they all did. Whatever virus triggered Syd's diabetes was probably some bug that spread around all the neighborhood kids but there was that trigger in Sydney that made her body react differently. Hopefully through more research, we can better understand why this happens. Type 1 is not caused by obesity or eating excessive sugar, neither of which applies to Sydney anyway.

This post, hopefully, has helped educate more people about Type 1 diabetes so we can clear the air about these common misconceptions. I can honestly say I had no idea what Type 1 was or what it takes to raise a kid with Type 1 before Sydney's diagnosis. I am hoping that through my blog, I can help educate more people about this disease and help eliminate some of the frustrating stereotypes that were mentioned above. I know most people mean well but if you aren't sure about something, just ask. There are some links on the right side of my blog that have some helpful information such as Type 1 myths vs facts. They are interesting to read.

In case you skimmed this post because of it's length, here is a brief recap so you can take the main parts and ingrain them in your memory. :-)

1) Type 1 is nothing like Type 2. They are very different diseases. Diet alone will not treat Type 1. To survive, people with type 1 diabetes must have insulin delivered by injection or a pump. This information is non-negotiable and I know of no exceptions to this rule. On average, the current life expectancy of a child with Type 1 is shortened by 7-10 years.

2) Syd's diabetes was not caused by a person. It is an auto immune disease. She did not get diabetes from having a poor diet and/or eating too much sugar. Nobody is to blame for her diabetes.

3) It takes a valiant effort everyday to control sugar levels. They can be quite volatile. Much of controlling this disease is an educated guess. Like I have said numerous times before, you can do everything right and still have bad numbers.

4) Every diabetic is different. Just because something works for Syd doesn't mean it would work for another kid. Furthermore, what works for Syd today might not work for her tomorrow.

5) There is no known way to prevent TYPE 1 Diabetes.

The reality is Type 1 is a difficult disease to manage but scientists and doctors have come a very long way in the last 70 years. Technology is getting better all the time. We have hope that we will see a cure within Sydney's lifetime. I truly believe we will someday be able to say that Sydney USED to have Type 1 diabetes.

Thanks for putting up with this post. I've always been an advocate for education and hopefully you can walk away after reading this and have a little more knowledge than you did before. If you feel so inclined, you can share this information with anyone you want. There is nothing wrong with helping to educate more people about things that are important to you. Thanks guys!! Stay tuned for the "mean mommy" post (AKA me) that will be coming to my blog soon!

Remember: She didn't do anything to cause her diabetes.

15 comments:

A. said...

This is GREAT information. I am glad you posted this. Sorry you've received non deserving ignorant comments about this topic. Good for you, for keeping your cool.

KLTTX said...

I am sorry that you had to post this Shamae. For Sydney's sake, people who do not know what they are talking about just need to shut up. The last thing she needs is to think that she is to blame for her disease. I did learn a lot from your post though. The fact that it is triggered by a virus is really interesting. They think that my mom's cancer (Leukemia) was also caused by a virus and no one would ever blame a leukemia patient for getting cancer. Same thing for a type 1 patient.

Rachel said...

Bravo Shamae!!!! It's unfortunate that we need to continue to post this information. I've also run into some pretty ignorant people. I was told that it was my fault that Tristan had diabetes because I couldn't protect him. I was told that I was a horrible mother.

I'm sorry that you had to deal with that, but in a way, I'm happy to know that I'm not the only one who receives these "dumba*s" comments!! Keep up the great work!! This article was very well written and full of extremely important information.

Oh and tell Sydney to expect a video from Tristan soon :)

Blake and Erica said...

That must totally be frusrating deal with people and there comments....Good for you for being Strong through this :) thanks for the info to I didn't know most of that.

periwinkle4 said...

While I was sad for you having to put up with rude comments, it was when I read that you believe that you would "be able to say that Sydney USED to have Type 1 diabetes" that I got teared up. I do hope so! And to look at that sweet face and read that caption - best sum up in the world. You are an awesome mom and I'm glad you're not letting anyone convince you otherwise.

Becki Kress said...

I'm sorry that you have had some ignorant comments. Thanks for posting all this information. It was really interesting.

tulipdjc said...

I think it was a great post! I am sorry at what triggered it but I learned a lot from reading it! Sydney is a great kid and has a great team of support, with you being number one!!! I hope you feel better soon!

Amy said...

Awesome Post!!! I hope that when I run across rude, ignorant people that I can remember some of what you said! And try to be polite at the same time! :)

Micah and Jen said...

Because of my own trials I am totally onto the whole...if you don't know, ask thing....and I am so glad you posted this! I guess because I worked in a diabetes clinic that cared for both Type 1 and 2 I assume everyone knows the differnce....but I guess not. You are amazing as is Sydney! I found this post to be VERY useful and may have to add it to my link for people to better understand what you and your daughter and entire family go through every single day! Oh....Micah totally forgot to call you on his way home. Are you going to be in town tomorrow? I'll email or call! HUGS

The Lane Family said...

This was a great post and very informational. I am sorry that people are so rude and like to share their preconcieved notions. I think anytime a child has something different than what people consider "normal" they feel the need to comment on it.

Amanda Panda said...

Thanks for the post, Shamae. Nobody knows everything, and it would be nice if people learned about different things before passing judgement. You are doing a great thing by sharing your experiences and the things you learn along the way. Hopefully it will help spread awareness.

ashycam said...

Thank you for the information. I have a aparently had some misconceptions as well that are now cleared up. my parents have type II and i know that type one was different but I didn't realize how different. You guys are great parents, and you do a great job with you girls. you are awesome.

Jill said...

It's gonna happen :( sometimes more than others and the only thing you can do is TRY to educate them. Also...here is the link to a great print out ;) I've passed this on several times and I think it's a great tool. I think they make pocket size cards you can hand out as well!

http://www.behavioraldiabetes.org/downloads/Etiquette-Card.pdf

Keep your chin up :)

Abigail said...

Thanks for the informative most. I learned a lot. Sydney is so adorable in this pic.

Abigail said...

Thanks for the informative post. :)
Sydney is adorable.