You can't eat that

My husband and I co-own a children’s performing arts academy with his brother and our sister-in-law. We just completed production week for our two spring musicals. These weeks are very intense for us and amount to working about 140 hours in nine days. This time it was around 160 hours. In a different post I will go into the details of how this affects my body. But for now I will just say, it is the reason for my lack of posts over the past two weeks.

In my last post I spoke about my diabetes diagnosis and in this one I will begin to talk about my treatment and my life with the disease.

As I mentioned in my last post, the ladies at The Endocrine Group spoke to me about ‘carb counting’. One problem for those who have diabetes is the misunderstanding that “as long as it is sugar free, I can eat it.” The problem is that not everything that is “sugar free” is free of carbohydrates. It isn’t just the simple sugars that cause the blood sugar to spike, but also the complex carbohydrates.

A brief lesson on the difference between the two:

Simple carbohydrates are easily, and quickly, digested. Simple carbohydrates very often contain refined sugars and do not contain as many essential vitamins and minerals. Fruits, juice, sugary candy, yogurt, plain sugar, and milk are examples of simple carbohydrates. Simple carbohydrates cause blood glucose levels to spike soon after consumption.

Complex carbohydrates take longer to break down, making the digestion process slower. They generally contain fiber, vitamins and minerals. Complex carbohydrates include vegetables, cereals, breads, legumes, and pasta. Complex carbohydrates take longer to absorb into the bloodstream, therefore the glucose levels do not spike immediately after consumption.

So, let’s take a look at a bag of Hershey’s Sugar Free Chocolates. One serving of the miniature sugar free bars contains 24 carbohydrates. This is the same as consuming eight ounces of orange juice. Now, someone who is diabetic would obviously take insulin for the orange juice, or perhaps not even drink it. However, they might not know to take insulin for something labeled ‘sugar free’, even though it has the same amount of carbohydrates as the orange juice. Do you see how this could be misleading? More than misleading, it really confuses the general public and solidifies their belief that diabetics shouldn’t eat sugar.

The treatment for Type 1 Diabetes has really changed over the years, but not a lot of people realize it. I find this frustrating and I get soooo tired of being asked, “Can you eat that?” in a way that sounds like I am poisoning myself. I know those asking the question really have my best interest in mind and genuinely do not want me to eat something that could harm me. However, I just want to scream, “I’VE BEEN LIVING WITH THIS DISEASE FOR OVER 10 YEARS. DON’T YOU THINK I KNOW HOW TO TAKE CARE OF MYSELF?!?!?!?” I always refrain and instead try to take a moment to educate the nagging concerned individual about diabetes and carb counting. If you have ever asked me this, please don’t feel bad. No hard feelings.

A couple of nights ago I went with my parents to Neuro Night. Neuro Night is hosted by the Oklahoma Center for Neuroscience. It is a monthly series featuring professionals from the community. Each month they focus on a different topic and this month the topic was, “The Brain and Diabetes.” One of the speakers told a story of a 15 year old boy with Type 1 Diabetes. He said the boy nearly starved at boy scout camp, because every time he would try and eat his leader would say, “Son, you can’t eat that. You are diabetic.” This is another example of how the treatment for the disease has changed, without the rest of the world realizing it.

Carb counting is a pretty accurate term. You do exactly what it says: you count carbs. The ratio varies from person to person. For every 15 grams of carbohydrates, I take one unit of insulin. This is really easy to do when eating packaged food. All you do is look at the label and do the math. It becomes a little more complicated when eating out or cooking at home. I have learned to guess pretty accurately on most foods. You learn over time how many carbs are in mashed potatoes, a piece of bread, strawberries, etc.

I have an insulin pump, so I can actually take as little as a tenth of a unit of insulin. This allows me to be very precise in the amount of insulin I take. There is a lot to say about my pump, so I will leave it for another post.

diabetes diagnosis

Flashback to 1992. It was September. I was 13 and in the 8th grade. One of my closest friends, Chelsea, had been diagnosed with Type 1 Diabetes several months before. We were musical theatre kids and I remember her mom coming to rehearsals and giving her a shot backstage. I thought being diagnosed with diabetes had to be one of the worst things imaginable. Remember, I was 13 and also thought getting braces would, “ruin my life!”

That September my mom received a phone call from one of our teachers. Chelsea had passed away. My friend, who was so young and immensely talented, was gone. Just like that. In an instant her life was over. She had the flu, which affected her blood sugars and she died from complications. This was my mental image of diabetes for a long time. Death.

Skipping ahead many years, and several thousand diet cokes later, to the spring of 2000. I was 20, in my junior year of college and not feeling so great. For a month, or so, I couldn’t keep enough liquid in my mouth. I would drink anything near me, suck on candy, eat ice cream, etc. I tried it all. I had to go to the bathroom all of the time and was having terrible lower back pains. I stayed home from class, because I could hardly get out of bed. I finally made an appointment with the doctor when I realized I lost seven pounds in a 24 hour period. I knew something was wrong at that point.

I went into the doctor and he drew some blood. He called me back the next day and told me he would like me to come back in. I met my mom there, with a very sugary smoothie in hand, and they gave us the news that changed my life. I had Type 1 Diabetes. Death.

The doctor left the room for a minute and I teared up. All I could think about was Chelsea. I knew I wasn’t going to die from diabetes, but it had been my mental image for eight years.

Those with Type 1 Diabetes do not produce enough insulin to control their blood sugar levels. Basically, insulin is like a key. The body uses glucose (sugar) as fuel and without insulin to ‘unlock’ it, the body resorts to using fat as fuel. This leads to diabetic ketoacidosis and sugars begin to spill into the urine and major weight loss occurs. This is what happened to me.

A normal blood glucose level is between 70–130 mg/dl prior to eating. Mine was almost 700 at the time of diagnosis. For years, those with diabetes just took their insulin at specific times throughout the day. They had to be very careful with what they ate. They couldn’t eat anything with a lot of sugar, as it would spike their blood sugar. Thankfully, things have really changed.

My PCP connected us with a group of doctors called, The Endocrine Group. We met with a nutritionist and a nurse first. They both were Type 1. They spent time explaining the disease and how it would affect my life. They taught me how to “carb count”, which I am so thankful for.

More to come later…..

celebration

I decided to start this blog as a way for me to express my feelings about living with Type 1 Diabetes and Ulcerative Colitis. I also hope it will be a resource for others and a place to share their stories. I also write another blog and on May 30, 2010 I wrote a post that inspired me to begin this blog. The post was a follows:

Today is my 31st birthday. In celebration I am going to do a short series on my life with two chronic, autoimmune diseases. Why are diseases worth celebrating? They are such a part of me and I haven’t really talked about them on my blog. I view my blog as a tool for me to share my thoughts and experiences about my life and the life of my family. I can’t be truly honest about my life, without sharing this part of me. I hope I can put a face to my diseases and you will learn a little bit more about me. Join me today as I celebrate my life and living it the way God designed.

An autoimmune disease occurs when your tissue is attacked by your own immune system. Your immune system is designed to attack invaders of the body, which includes infectious agents. Those with autoimmune diseases have antibodies in their blood that target their own tissue. Most autoimmune diseases are chronic, which is the case with mine. I will have them for the rest of my life. Every minute. Every day. Forever and ever. And…..I’m okay with that.

No one really knows what causes the battle within the body, but it has now happened to me twice. Both my endocrine and gastrointestinal system have been attacked by my own body. The result: Type 1 Diabetes and Ulcerative Colitis. I did not do anything to get either of these diseases. It is not my fault. This is very important to understand, for those with an autoimmune disease. It was out of my control. It is unknown what causes an autoimmune disease, but many in the medical field believe those who develop one have a genetic predisposition and it is triggered by an environmental factor, such as a virus. There can be a genetic link, but often the odds are very low. My sister also has an autoimmune disease, which she was diagnosed with two months prior to my diabetes diagnosis. Unfortunately, if you have one autoimmune disease you are more likely to develop another. Since they aren’t awards or money, I am good with the ones I’ve got!

Last week I posted a status update on facebook, that wasn’t really me. It said, “…needs to have a 30 second pity party. Sometimes having two chronic autoimmune diseases really stinks.” I don’t wallow in self pity, typically. You may hear me complain about many things, but you won’t hear me complain about my diseases very often. I kind of regret that status update. It is not the image I like to paint, nor the mentality I generally have. I was raised to deal with what was handed to me, take a moment and move on. I don’t want it to sound like my parents weren’t sensitive or caring. Actually, it is quite the opposite. They did, and still do, care about me very much and I believe that is why they raised me to not feel sorry for myself. They taught me to make the best of my situations and to use my experiences to make an impact on others. I am forever grateful for this.

I believe that my diseases have given me character, however they do not define me. When I was first diagnosed with diabetes, the nurses told me, “You are not diabetic, you have diabetes.” They felt saying I was “diabetic” defined me. It let the name of the disease take a greater position than me as a person. Really, I don’t care either way. I say both. The label doesn’t matter, but my attitude does.