About Me

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I'm a glass-half-full type of girl. I was diagnosed with type 1 diabetes, grave's disease and celiac disease in 2010 and life-altering allergies in 2013. I believe having a positive attitude is the only way to live with dis-ease. I also believe that life doesn't have to be PERFECT for it to be WONDERFUL. Dis-ease is expensive, so I live a frugal yet healthy lifestyle. This is just my blog; my day-to-day story.

Thursday, July 5, 2012

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.

1 comment:

  1. I had to take a Myers-Briggs test at work today. As I answered so many questions about whether I prefer scheduled or spontaneous, I wondered how much my personality has been affected by diabetes - a disease that demands we be planners - vs. how much my ability to deal with diabetes is reliant on that side of my personality. Nature vs nurture (or lack thereof)?

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