Making disease management more efficient.

Most people who live without disease would never guess the amount of time and effort we put forth in order to live a "normal" daily life. Once you are diagnosed with a chronic illness, the days of living spontaneously and without planning fly out the window. I don't share with people outside of my inner circle all that is involved in my daily care. In fact, most people think I never have any problems with my conditions or know that they are conditions that require daily care because they never hear anything from me about it. This is because I don't feel it is their responsibility, nor do I want to feel like I need to check in with them regularly for "updates." Managing diseases daily is a lot more work than what it looks like on the outside. One way that makes my disease management more efficient is to follow a schedule/routine.

Let me give you an overview of what a typical day in my life looks like, from a disease management perspective. At the start of each day, before even getting out of bed, I check my blood sugar. (This likely has already been done a few times throughout the night if I've randomly woken up or gone to the bathroom). The reason why I do this is because when you are dead tired in the middle of the night and you wake up, you wonder what woke you up. Was it your body telling you that your blood sugar is low? Is this a "sign"? Everyone's vision is kinda out of focus and their head feels "light" and you feel slightly disoriented when you wake up in the middle of the night. Since these are the same feelings you can have when you are low, you might as well check while you are awake.

After I'm up and out of bed in the morning, I take my thyroid medication right away for my grave's disease. I am supposed to wait 1/2 hour - 1 hour before eating breakfast. I am not allowed to eat anything with calcium, vitamin C or iron within an hour (of either side) of taking the medication. I am not allowed to take any vitamins or birth control pills within 4 hours (before or after) of taking the medication. So I follow a strict daily schedule of when I take my vitamins and other medications, so they do not interfere with each other. Not following these rules will cause the thyroid medication to be ineffective and as such, will cause it to not control my heart rate. As a person who had 2 heart surgeries in a 3 year period, I take these instructions very seriously.

Moving on, I then eat breakfast, the easiest meal of the day. Breakfast is quite easy because I usually only have 2 meals in the rotation: egg whites w/ veggies or quinoa w/ almond butter, almond milk and fresh fruit on top. Consistency has its benefits when you are trying to manage blood sugar (and weight, for that matter). Everything in my house is gluten free so there is no worry of cross contamination or having to give any thought of being glutened. I don't have to think in the morning about carb counting, because I eat the same breakfast every morning and already have it all figured out- I know the carb count and how much insulin to give to cover it and how long prior to the meal I need to administer the insulin for it to prevent a post-meal high or low.

From the time I wake up, I am poking my fingers every 2-3 hours during waking hours. That is assuming there are no blood sugar issues that require extra checks.

Lunch and dinner are pretty much handled the same. If I have packed a lunch or am eating at home, chances are the food is already pre-made ahead of time and I am already aware of the carb count. I don't have to guess because I know how much of each ingredient I put in it. And again, any food I prepare is always gluten free, so no worries there. Eating out is a whole other ball game. Not only can you never be sure that your food is entirely gluten free (including free from cross contamination), it is also nearly impossible to know what the carb counts are or what the actual serving size is. So eating out is always a potential landmine for either gluten issues and/or insulin bolusing/carb counting issues. For these reasons, it is very seldom that I eat out. Not to mention I am very frugal and I think eating out is expensive, but that's a whole different blog (and one that I will post soon). Sometimes I wish I could have the freedom of eating out more, but that can only happen if I am willing to accept the risks associated with eating out (especially when it comes to gluten). And this folks, is not something I am willing to do.

I am an overly cautious person because I am not a person with just one health issue. I have had 2 heart surgeries. I have 3 auto immune diseases. I have food allergies and severe seasonal and environmental allergies. I don't have "room" to be careless with my care, because not taking care of one of these issues can have a negative impact on one of my other diseases, starting a downward spiral that can take days/weeks/months to fix. As an example, last year I became lax when it came to treating my allergies, in order to save a little money. As a result, a flare up of my allergies quickly turned into a very serious bout of bronchitis that wasn't responding to medication. Being sick with bronchitis negatively impacted my ability to control my blood sugar. My physician gave me one last antibiotic to try and said if the bronchitis didn't turn around within 24 hours, I would be hospitalized. I was thisclose to being hospitalized, but luckily for me, the medication had enough impact to prevent that from happening. All that trouble, which lasted about 3 weeks, could have been avoided had I done two things I was advised to do: take my allergy prescription every day as prescribed and avoid dairy at the first sign of allergy flare up (dairy is a known seasonal allergy aggravator, whether you are allergic to dairy or not does not matter). It cost me wayyy more money in copays for multiple doctor visits and additional prescription copays (and the threat of a high-dollar hospitalization) than if I had just paid the copay to get my prescription allergy medication to begin with.

I have a friend who has celiac disease. Other than that, she is very healthy. She does not follow a strict gluten free diet the way that she should. But she has not suffered any major consequences as a result of not being compliant, and obviously you have more choices (restaurants/food) if you don't care about being glutened. She knows the risks of not taking care of her celiac disease, but because none of those risks have ever come to fruition, she is noncompliant. I, on the other hand, have not one, but TWO auto immune diseases that my doctors feel strongly were a direct result of untreated celiac disease. I won't risk getting a 4th auto immune disease by not following a strict, gluten free diet. No restaurant cheeseburger is worth it to me.

We each have our own way of managing our diseases. Whether you realize it or not, you probably have a regimen that you follow daily. None of us are perfect; we all fail in some ways and succeed in others. But the goal is to keep trying. And one of the huge benefits we have over the generations before us that had these same diseases is the information highway. When we are fresh out of inspiration or motivation, we can read each other's blogs for ideas and support. Maybe we just need to read about someone else's problems for a change. Or other people's success stories. Reading other blogs is certainly an important part of my diabetes and celiac management. I need ideas, support, camaraderie as much as I need insulin, thyroid meds and gluten free food.

Just as a reminder I am not a health professional of any sort, and I am not offering medical advice.

Also, feel free to drop me an email to say hi sometime. I like hearing other people's stories.

Man down.

Happy 4th of July! I am blogging from my couch, half laying down, with pillows rolled up under my knees and my back ever so slightly propped up on a pillow. No fireworks for this girl this year. I somehow hurt my back/neck a few days ago (I have no idea how), more like 4 or 5 days ago, and have been hurtin' since. I thought I could knock it out with some tiger balm, ice hot patches and ibuprofen. Fail. It has only gotten worse and I have pain shooting from my back down my left arm to my digits. I called a chiropractor a few days ago, who recommended getting a massage and icing it. Today was the first day that I was slightly less sore, so I scheduled an appointment at the massage place (who knew they'd be open today?). It was excruciating (not her fault).

I had to cancel all my 4th of July plans due to the this back issue. Feeling sorry for myself, I made myself a nice supper. I would have taken a picture but I woofed it down too quickly. I fried/baked some sundried tomato garlic polenta, then made a nice tomato topping out of a can of unsalted diced tomatoes (drained), chopped onion, fresh basil leaves and a few garlic cloves (all simmered together in a pot on low). A delicious, gluten-free, light supper made on a whim with a bunch of randoms in the fridge/cupboard.

In my food coma, I forgot to bolus before I ate. Crap. Polenta has a lot of carb, especially as much as I ate, plus all the the tomatoes...

I'm going to have to really hit the pavement once this back pain is gone. For the last 4 days, all I've done is lay on the couch, only getting up to cook/eat and go to the bathroom. Which means all calories I'm eating... none of them are getting burned off.

Tonight my plans are to continue laying here (I'm so bored I could scream), watch the New Girl marathon on Fox, and hang out with the dog, who is currently sitting on the couch next to me staring at me. She's good company.

In reality, being stuck indoors this week is not a terrible thing. The heat index has been over 100 all week (today is 107). Sooo hot and gross and humid. Minnesota is the state of extreme weather. Want 50 below zero temperatures (before wind chill) in the winter? We got it. Want 100 degree temps, with high humidity? NO PROBLEM. Lord, someone please remind me why I live here...

Hope everyone is having a great 4th right now! Get out and enjoy the fireworks.

The Hazards of Your Disease Becoming Trendy.

You may have noticed that the gluten-free diet has become a little trendy lately. It seems to be the latest buzz at restaurants and at grocery stores. The trend has definitely benefited us celiacs, in that we have more food options. But there is a downside that I recently discovered.

There was a time when gluten-free wasn’t a popular fad diet. Now that it is, it can be difficult to decipher whether a “gluten-free menu” offering at a restaurant is truly gluten-free. One must do a little investigating in order to determine WHO that gluten-free menu is catered to; either 1). The needs of people who are trying to avoid gluten (fad dieters) or 2). Those of us who must strictly avoid gluten for medical reasons. (An example is Domino’s new “gluten-free” pizza offering that Domino’s has since changed their advertisement to state it is not safe for those with celiac disease, even though they still call it “gluten-free”). Point in case, gluten-free menus do not always = gluten-free.

I had a long discussion last week with a restaurant manager at a restaurant that I wanted to try out. I was inquiring about whether they offered gluten-free options. He confidently announced they had just launched their new gluten-free menu due to high demand from customers. I began to ask more in-depth questions about their kitchen practices and told him I have celiac disease. When he realized I wasn’t a “fad dieter,” he became much more helpful. He shared with me his frustration with gluten-free fad dieters that make his staff go to great lengths to accommodate their gluten-free meal preferences, only to see the same patrons order a gluten-filled dessert. He expressed that this confuses his staff; who already struggles to understand celiac disease and food allergies, and it discredits those who actually really need to be on a gluten-free diet (celiacs and those with life threatening food allergies). He said it can result in restaurant staff not taking the food-prep precautions and cross-contamination risks seriously. This complaint seems to have resonated within the restaurant industry. I recently heard a food critic on the radio saying that this is currently the #1 complaint of restaurant managers and chefs she polled.

I made a point to validate the manager’s frustrations and told him that many of us with celiac disease have the same concerns when we see our disease becoming a fad diet craze. It’s frustrating- and scary- for those of us for whom this diet is not an option. It definitely is the reason I feel the need to over explain every time I set foot in a restaurant. I need them to know that I am a celiac and I will suffer serious medical harm if a crumb hits my plate.

I am reading more and more articles about restaurants that have been busted for small infractions and /or outright gross misconduct when it comes to gluten-free offerings. One that is coming to mind right now is the story of a popular, well-respected chef (who at one point was even on a popular cooking show) who admitted on his Facebook page to purposely using regular, wheat flour-based pasta whenever a patron ordered pasta off of his restaurant’s gluten-free menu. He said he wanted to “prove” to the public that celiac disease and gluten intolerance does not exist and that people don’t actually get sick from eating gluten.

You might think that’s ridiculous and downright cruel, even dangerous, and wonder how someone could be so self-righteous (I agree!). And you may think those types of situations must be rare. But you’d be surprised at the number of articles I have read. I even have a personal story of my own to share. At my previous employer (a large, national health insurance company), there was a registered nurse who worked on my team. Not knowing me very well and not knowing I have celiac disease, she admitted to me that she had purposely been gluten poisoning her new boyfriend, because he had told her he could not eat gluten and she didn’t believe him. So she was sneaking gluten into his meals to see if he would get sick. A registered nurse!

So when I hear stuff like this, it makes me not want to go out to eat at all. I have t1 diabetes too, and I can’t imagine someone not believing I have it or thinking that it doesn’t really exist at all and purposely going out of their way to harm me in order to “test” me.

Celiac disease is already a challenging disease and I wish that one of the challenges of having it didn’t include having to prove its existence or its severity thanks to the influx of fad dieters. Frustrating!