Monday, November 21, 2011

Hey Pancreas!

Well, I've been majorly slacking in the past week or so on blogging. It's sad that it is Diabetes Awareness Month and I'm slacking, but my only excuse is that I've been sick for about a week. I was out of work on World Diabetes Day and had to make a lovely visit to the doctor to get some meds. I even lost my voice that day! Crazy.

I'm only now getting back to myself. As a peace offering to my lovely readers, I offer you this amazingly hilarious video. My best friend shared it with me and I laughed so much! I posted it on my Facebook page last night and I know it's already making the rounds in the D-OC, but for those of you who've missed it so far, I wanted to give you another chance to see it.

Don't laugh to hard. And try not to get the song stuck in your head. :)

Wednesday, November 9, 2011

Diabetes Awareness - Myth #2

Diabetes isn't Deadly

As usual, I'm behind on my blogging. I tend to take things going on in our community and think about them, read what others are saying and then think some more before I write. One of the biggest myths that I know of about diabetes is that diabetes isn't deadly. If you ask your average person on the street, they'd tell you that as long as you take your medicine and eat well you'll be fine (that's if they don't just tell you to lose weight and quit eating sugar).

The truth of living with Type 1 diabetes is that without insulin I will die. Anyone living with T1 will die if they do not take insulin. But did you know that even though you take insulin, you can still die as a direct result of diabetes? I'm not talking about long term complications that end up in eventual death. I'm talking about at any moment, at any time.

I wrote a little bit about it when there was a young girl who died in her sleep from undetected low blood sugars. It has become one of my most popular posts ever, but the truth of it is in the post. Basically, no matter how much we do right, sometimes it's not enough. The insulin we take to stay alive can also take our lives.

If it were as easy as a set amount, or a set insulin to carb rations I think none of us would worry. But so many other things factor in. Stress, exercise, lack of exercise, change in routine, illness, hormones, and even changes in weather/seasons can all have an effect on blood sugar. And most of the time these variables are unpredictable at best. Then add in "hidden" carbs, the effect of fat on digestion, the occasional "bad" batch of insulin....well, you might be starting to get the picture.

Diabetes is with me every minute of every hour of every day. It's with me always. And in that, I don't get the chance to say "time out" when things in my life are getting crazy. I live by myself. This is something that most 30 year old women would think nothing about. I can take care of myself....right?
But the truth is that with tight blood sugar control (i.e. as close to non-diabetes levels as possible), you deal with more low blood sugar levels.

So the fact remains that I could die in my sleep. It is possible. It's a scary thought. I don't fear being dead. My faith in Jesus tells me that being dead isn't the end. But the thought of dying does scare me. I don't want to leave before I've finished whatever I'm supposed to do in my life. I have goals to accomplish and things to do that make the thought of diabetes stopping that a terrifying thing.

This past week JDRF took out an ad in The New York Times calling the FDA to action in regards to approving something called a Low Glucose Suspend function on insulin pumps. An insulin pump is kind of like an IV. Even if my blood sugar is low, it continues to give insulin (which in turn, continues to lower the blood sugar levels). With a low glucose suspend, the insulin pump would automatically (without my help) turn itself off. This could save lives, but the FDA has yet to approve it, even though it is now widely available in Europe. Below is the ad:

1 in 20 people. There has been argument over how accurate that number is. But all I have to say is this: Piper could die in her sleep from a low blood sugar. She's a child. So could I. I'm an adult. Any person who takes insulin for their diabetes, regardless of age, race, gender, religion....any of us could die. The fact that there is a possibility of death (regardless of the statistics) is too much. I DO NOT WANT TO DIE IN MY SLEEP. Not from a disease that I work so hard to live successfully with. Not a disease that's been with me longer than I can remember.

The fact that there is a child in that ad draws attention. I understand why JDRF uses children. It's a great marketing tool. It's extremely effective in touching people's hearts. The thought that a child could die NEEDLESSLY will bring action about. However when I look at that JDRF ad, I see this:

And the faces of all of friends who are daily living with diabetes. The myth is that diabetes isn't deadly. The truth is that DIABETES KILLS.

Tuesday, November 8, 2011

Burnout - Mara's Story

A couple of years ago I was blessed to meet Mara on one of my many trips to New York. Even though she's not a blogger, Mara and I have become facebook friends and have stayed in touch. I love that she has agreed to write something for my "Your Voice" project and I really feel like it fits perfectly into Diabetes Awareness Month. I would venture to say that anyone living with diabetes has suffered what we call "burnout" at least once (most of us many more times than that).

This is a big reminder to people that living with diabetes is a full-time job and that it can often times be overwhelming (even when you've lived with diabetes for many years). Here is Mara's story and I'd like to thank her for her gracious submission!

When Cara mentioned that she was seeking “non D-bloggers” to fill in some spots while she took a hiatus due to diabetes burnout, I jumped at the chance. Anyone who knows me via Facebook (either in “real life” or just through the DOC) knows that I am not shy about posting about diabetes. Usually referred to by me as “Big D,” diabetes becomes the focus of many of my posts, which are often vents or questions/requests for feedback from other “D-peeps.” (I put these things in quotation marks because I’m not really sure if other people use these D-nicknames (sorry, “D-nicknames”) or if these are just pet names I have for it in my head!)

So, when Cara told me to go for it, write a guest post, I was trying to think of what I’d write about. This was almost a month and a half ago, a few days before my 20-year Diaversary (Oh come on, I know we all use that one!). I was thinking I’d write about all the things I’ve accomplished in 20 years in spite of the fact that I have diabetes, and because I have diabetes. I was thinking about referencing how I feel that having diabetes as a kid, I’d been forced into independence and self-sufficiency at a young age, and how that just transferred to other areas of my life. I thought of mentioning how through the DOC and in-person events, I’ve met so many other people living with Type I Diabetes for many years like I have, and how wonderful they have been as support, even if I’ve never met them and just read their blog posts and go “Yeah, ok- whew- somebody gets it!” I also thought of writing about how proud I feel that I went through 4 years of college without even knowing that a pump existed, and these days I work a crazy schedule and manage to manage everything, no matter how many other deadlines I have.

You feel a “but” coming, dontcha. I feel it, too. I felt it just at the point when I had all these ideas in my head for my guest post on this blog. That “but” came in the form of one of the most erratic and stressful times of roller-coaster fluctuations I can remember in a long time. I’m still struggling with it, have an endo appointment in a couple weeks, and I know, like all the times like in the past, it will work itself out. But, I felt the irony of not being able to write a guest post to help Cara out in her time of “D-burnout” because I myself was now feeling it. The truth is, I AM proud of my independence, what I’ve accomplished, how incredibly healthy I am despite having a crazy disease like diabetes.

But, I hate it. I hate when I feel one way when I’m low and another when I’m high and when my body is just tired- TIRED- from days and days of ping-ponging between these too. I hate that I work long, crazy hours at my full-time job and have diabetes as my second, unpaid job (one that I did not volunteer for). I hate that I do everything right and sometimes it still goes all wrong. I hate when I eat an entire meal and stuff myself and then realize I’ve miscalculated and have to eat half the kitchen to fix it (which will of course require a correction 3 hours later…). I hate that I bring tons of supplies along when I won’t be home for many days and my high sugar makes me eat through them and send me into panic. I hate that I’m more than ever in need of a CGM but my insurance company disagrees and considers this crucial piece of diabetes management a luxury (um, are there any luxuries you know of in diabetes?!) And I hate that I can’t help out other D-peeps who are in need of comfort and advice because I’m so burnt out myself.

So, why am I writing now? I thought I couldn’t write about diabetes when I was burnt out. I had emailed Cara to say that I didn’t think I could do it at the time because of my burnout. And then I realized that sharing this with the diabetes community would relieve my stress and maybe some of yours. And you know what? It worked. I feel like I’m writing to a journal, and it feels good to get my frustrations out in writing (and I even saw that others blogged about the burnout, too). But, it feels even better to share my frustrations (and successes…) with people who I know at one time or another have felt the same thing. And, um, yeah – we should all be incredibly proud of ourselves. We’ll see what the next 20 years bring.

Monday, November 7, 2011

Diabetes Awareness through Performing Arts

Earlier this year I was blessed to see a wonderful musical that helps educate about diabetes. This musical, called Andy & the Beats, was written, directed, and starred a man living with Type 1 diabetes as part of his senior thesis/project for college. It was my luck that said college is only a couple of hours from me, so I made the trip and was very glad that I got to be a part of that.
I wrote about seeing the show and even at the time I saw it I thought, "someone needs to do something with this musical." It could be such an educational tool and has so many things about it that would be great, especially for families with children who have been recently diagnosed with diabetes.

After the short run, I hoped that there might be some more attention brought to the show....
Now that's happened. Andy & the Beats is in contention for the Pepsi Refresh Everything grant program. They are trying to get a $10,000 grant to help do another staging of this show. And with each staging and chance for this show to be performed, more and more people will be educated about diabetes.

You can help Andy & the Beats get this grant by voting HERE. You can vote once per day. They are, at the time I am writing this, in 48th place. They need to be in the top 15 in order to receive funding. You can either vote by using your facebook account, or you can create a free Pepsi account and vote that way. All the information is on the page for Pepsi Refresh Grant. Each person gets 5 votes per day, but only 1 can be counted per entry, so go in every day and vote for Andy & the Beats.

We are a very large and very strong community of people living with diabetes online. I KNOW if we can get Disney to pull a certain episode of a television show, we can help Andy win this grant.
Please pass this information along and follow Andy & the Beats on facebook.

Friday, November 4, 2011

Blue Fridays

For Diabetes Awareness Month, I will be wearing blue every Friday in November. This entire month of November is about raising awareness about diabetes and helping to break stereo-types about diabetes. As an advocate for diabetes I blog. I talk. I learn. And this month, I wear blue.

Thursday, November 3, 2011

The Invisible Man (Woman)

Here's another "Your Voice" post from my good friend Sherry. She is such a blessing and has a beautiful way with words. I've been holding onto this post for a while, but I thought that it was perfect for Diabetes Awareness Month considering the insight it gives into having a low while in public. For each person it can be different, but I've had the same scary feelings that Sherry speaks about in her post.

For now Sherry doesn't blog. Instead, I let her post here whenever she feels like she has something to day. However, I think I'll eventually turn her to the "dark side" just might take a little while. ;) You can find Sherry on facebook.

I sometimes wonder if I am made of plastic. Not visible to the human eye. Sometimes this is frustrating.

Here’s the scene….I’m in the local mall, scurrying around preparing for our upcoming wedding. (our 25th anniversary wedding…happening in a mere two weeks, but that is another story.) The ring bearers need matching shirts. My husband needs a pink necktie and my son needs a yellow one, but I won’t know what shade of yellow until I see the dress the bridesmaid has. I call her on my cell phone, but she doesn’t answer. Ties are in abundance in these big stores, but try looking for a certain color and you have a challenge that is daunting! But I digress….

I’m bustling about the department store, pushing my youngest son in his wheelchair. He and his chair together weigh more than I do…plus we have the usual profusion of diaper bags, purses, feeding supplies, packages, etc. hanging off the back of the chair.

Giving up temporarily on finding the right colors of ties, I meander over to the little boys section. I’m delighted to find matching shirts, snatch them up and pray they will fit, and proceed to the checkout. There are several people ahead of me, and the computers are acting up, providing quite a tizzy among the workers. All of a sudden, I realize I feel low. Odd, since it’s only 11:30 a.m. I brush off the feeling and continue waiting. A few minutes later, I realize I probably should see what is going on in the blood sugar department. I slink off behind a rack of clothes since I don’t want to do the finger poking and bleeding routine in front of the innocent children wandering around. After all, this is the children’s clothing department. My meter confirms a saucy little 55, but I feel about 25. Glucose tablets come out amid the curious stares of the children, wondering why this lady is sitting on the floor eating candy. No one above age 12 notices the lady sitting on the floor.

After getting up and paying for the shirts, I make my way to the food court on the opposite end of the mall. The road looks terribly long to me. I finally can’t push or walk anymore so I sit down. My little 9 year old son, in his wheelchair, sits beside me. He is only about 10 months old mentally, but he reaches out his one usable limb, his right arm, and tries to touch me. I pull his chair closer and lay my head on his chest. He proceeds to hold me tight and rub my back. It feels wonderful to be touched. I don’t know how long we sat this way, but when I opened my eyes, I realized there is an ice cream stand right in front of me. Two middle aged ladies are working there, chatting and staring at me. They say not a word to me.

I finally feel like I can walk so I proceed to the food court and try to purchase some food. This requires more thought patterns than I currently have in my brain, and I discover that I left my change purse back in the children’s department. Fortunately I have some money in my purse and purchase food, but by now I can’t remember how to eat it.

As I sit there amid dozens of people, I lay my head on the table beside the food. I know the food will help me, but only if it enters my body. I can’t seem to remember how to put it in my mouth. Once again, I figure I must be made of plastic. No one sees me. No one thinks it’s odd that a lady is lying on the table, not eating the food in front of her. I remember feeling very lost… a little child in a crowd with no one to guide me. I feel vulnerable and sad. I wonder why no one cares.

Relating this story to my husband later that evening, he says that he thinks people are afraid to get involved. Afraid to help someone in need because of a lawsuit. I tell him, “How can someone get a lawsuit for giving a person food?” He says people just don’t know, they don’t understand Type 1. Right.

Guess I’ll just continue to be plastic. Invisible. Or maybe ladies lying in the floor at the mall eating candy are commonplace. I’ll have to look next time I’m there shopping. Maybe I just missed them because I was low.

Wednesday, November 2, 2011

Diabetes Awareness - Myth #1

People with Diabetes Can't Eat Sugar

I have had diabetes since 1986. I was 4 years old. Things were so different at that time when it came to diabetes care. I believe that this time period (and the many years before it) were the reason that many people believe that people with diabetes can't have food or drink that contain refined sugar. At that time, the understanding of how foods effect blood sugar were very different than what they are now.

Here's where the myth busting comes in:


Yup. You read that right. I have Type 1 diabetes. I take insulin to stay alive. And I CAN have sugar.
A healthy person eats all types of food. The foods that cause blood sugar to rise are foods that contain carbohydrates. There are other things that can cause blood sugar to rise, but I'm only addressing on myth at a time.
If you look on a food label, there are things broken down. Fat, Calories, Sodium, Carbohydrates. At a very basic level, foods that have carbohydrates are things like grains, fruits, and sugars. When a healthy person eats something with carbohydrates, their body produces insulin to turn the carbohydrates into energy for the body.
A person with diabetes either doesn't produce insulin, or the insulin is not used properly by the body. Because of this, people with diabetes have to take insulin (for those living with Type 1 or Type 2) or pills (for those living with Type 2) to help their body turn the carbohydrates into energy.
It is true that a person living with diabetes may chose to refrain from some types of carbohydrates in order to control their blood sugar levels easier, but overall, a person with diabetes can eat any type of carbohydrate as long as there is insulin (or other medication) to cover the body's need to turn the carb into energy.
A fact that many people that do not live with, or care for someone who lives with diabetes is that a regular sized snickers bar has 35 grams of carbs. There is right around that same amount of carbohydrates in two slices of regular loaf bread. Obviously, for anyone with or without diabetes, the bread is probably a healthier choice. But the fact remains, that I would give the same amount of insulin for either of these items.
I won't get into all the boring details, but some carbohydrates do digest and effect the blood sugar differently. And it's different for every person. I typically avoid pizza and cereal because I have a harder time covering these types of carbs with insulin. I have a friend who chooses to avoid pasta. I try to cut down on my rice intake.
Each person living with diabetes should eat in a healthy should the person who does not have diabetes. Sure, you shouldn't eat sweets all the time. No matter who you are. But don't look at a person living with diabetes and tell them that they shouldn't eat that cupcake. If treating yourself to a cupcake every once in a while is okay, let the person living with diabetes decide if it is a good time for them to treat themselves.
We'll make a deal with you: You don't tell us what to eat, and we won't tell you what to eat.
And now you know the truth: People living with diabetes CAN eat sweets!

Tuesday, November 1, 2011

Diabetes Awareness Month

Today marks the first day of Diabetes Awareness Month. This month there are activities going on all over the world to bring awareness to diabetes and the need for a cure. This month I am going to be posting quite often. Many of the posts are going to be (hopefully) dispelling common myths about diabetes. Other times I will be posting something about my life and living with diabetes. And other times, I will be putting up posts to go along with my "Your Voice" project.

If you have a myth you'd like me to cover, please comment or email me and I'll see what I can do. If you'd like to submit a post for the "Your Voice" project, please click at the top of the screen or HERE to get information about who can submit, how to submit before you email me your post.
Please remember that people live with diabetes every single day. It's a disease that doesn't go away. There is NO CURE for diabetes. Until God grants me my healing, or science discovers a cure, I will continue to live my life with diabetes Every Day, Every Hour, Every Minute.