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.

Saturday, April 19, 2014

socially uncomfortable gluten free situations.

BEING GLUTEN FREE AIN'T EZ.

It's at certain times of the year that my anxiety around having celiac disease flairs up. It is usually around all holidays. A bit of panic arises in me when I receive an invite to a birthday party, or a dinner party, too. It is hard to always maneuver through food situations when you can't eat what everyone else is eating.

I'm a tough celiac chick. I've managed my way through several food situations, including getting glutened at restaurants that have assured me an understanding of gluten free food prep.

Here are a few uncomfortable situations that I have found myself in just in the past year:

1. A host of a dinner party assured me the crackers in the bowl were gluten free. I didn't want her to think I didn't trust her, but I DIDN'T TRUST HER. I asked to see the box they came in, only to see they were the "Made with Brown Rice" Triscuits that, right on the label, stated "CONTAINS WHEAT."

2. The same host, at a different party, made a batch of "gluten free" pasta salad, which I found out contained a brand of non-gluten free bacon.

3. A woman i had never met before sitting across from me at a dinner party called me out in front of a large table of people on my "so-called Celiac Disease," saying if it really existed then how come no one had ever head of it before recently? She also continued on to say it was a load of sh*t diagnosis that doctors just made up and that she didn't believe for one second that someone couldn't eat wheat.

4. Out with my date and his family at a fancy dinner establishment that advertises their gluten-free menu and safe food prep practices, and after advising the host, waitress AND the manager on duty of my medically necessary gluten free diet, I found a piece of regular spiral pasta in my steamed broccoli. (This restaurant doesn't offer gluten free pasta). When the manager came to our table to discuss the issue, the manager explained that the same strainer was used to strain my broccoli that they use for their gluten-filled pasta. Not only did the manager refuse to take the meal off the bill (he offered me a free dessert), but my date's father DEFENDED the manager out loud, agreeing with him that it was "no big deal," when the manager and I were talking. (This was at BONFIRE restaurant in Eagan, MN for all the locals who are wondering).

5. An acquaintance of mine, who eats gluten free occasionally by choice, surprised me with a flourless gluten free chocolate cake. Nervous, I went over every ingredient in the recipe with her to make sure it was truly gluten free. Suspicious by the white flour-looking substance around the side, she advised me she used the nonstick spray, Pam with Flour, to spray the pan. Luckily, I caught it before eating it.

6. I took a friend out for her birthday, but told her that I had to pick the restaurant. I ALWAYS HAVE TO PICK THE RESTAURANT.

These are just a few examples of why it is so difficult to have celiac disease. Celiac disease depends on the details- what spray oil was used, were the pans/cutting boards/spatulas/colander cross-contaminated? Have I sufficiently grilled the restaurant manager on their food prep practices and ingredients? It is difficult because well-intentioned people will inadvertently gluten you. Restaurants that advertise gluten free menus will gluten you. It makes for some awkward social situations, especially when you are not among close family and friends who understand.

Of the three autoimmune diseases I have- type 1 diabetes, grave's disease, and celiac disease, it is the one that gets taken the LEAST seriously by others.

So to my other celiac disease peeps out there, here is a big virtual hug before the upcoming holiday meals. May you stay safe and healthy!

Thursday, April 10, 2014

Managing Stress with Autoimmune Diseases.

I am in a constant state of improvement. Whatever I'm doing, I want to do it better. Whether I'm working, cleaning, eating, or managing autoimmune diseases, I look for ways to do things smarter and more efficiently. This can become a very stressful mindset when you are trying to manage diseases that are not easily managed and that do not have a rule book you can follow. When things don't turn out the way I want them to, I blame myself, feeling I wasn't paying enough attention or making something a priority when I should have. Needless to say, my stress levels are always running on high. Stress isn't good for anyone; but it is even worse for someone who already has 3 autoimmune diseases. One of the triggers for auto immune is stress. I also know that the body is not meant to live in a constant state of stress, to always live in the fire, yet I can't seem to get myself out.

I've tried various ways to reduce my stress, including reading, walking, and I tried meditation, which seemed impossible for me because I could not stop my anxious mind from wandering. Then one of my providers recommended a program through the University of Minnesota, called the Mindfulness Based Stress Reduction (MBSR) program. It is based on the teachings of Jon Kabat Zinn and began at the Univ of Massachusetts. It is an 8-week intensive course, once a week for 2.5 hours and one weekend retreat, with daily "homework" exercises that are about 1 hour in length. The basis of the class is that there are stressors in your life that will never go away (e.g., chronic diseases or injuries, work life and relationships), but changing your thinking can greatly improve your disease, your outlook, and how you care for yourself. It can change how you respond to stressful situations or even daily stress. It is a scientifically-based class, proven to improve a lot of health conditions (improve, not cure). As Jon Kabat Zinn wrote, "As long as you are breathing, there is more right with you than wrong with you." Isn't that a beautiful way to view yourself and your health?

It is very hard to change your thinking and retrain your brain. It is not simply "just doing it." It requires daily mind exercises to strengthen the brain, just as you need to exercise to strengthen muscles in your body. Although these exercises are mind-based, they are actually quite challenging. Trying to learn it from different books has not been helpful for me; having an instructor-led class has been a whole different story.

I have completed 2 weeks of the program and already I feel different. I am doing the daily exercises and I'm using the techniques in daily activities. I have experienced measurable improvements in my health already. Lower blood sugars which has resulted in lowering of my basal rates, and my blood pressure was considerably lower at my dr appointment yesterday (100/60). But most of all, my mind is changing how it thinks and reacts to daily stress. I am using a non-judgmental awareness throughout my day.

The book we are reading, "Full Catastrophe Living- Using the Wisdom of Your Body and Mind to Face Stress, Pain and Illness" by Jon Kabat Zinn is an amazing book with great insight. It demonstrates for me just how powerful the mind is and that how we think can greatly improve or compromise our health.


There is a workbook, with CDs, as well.

I set up my meditation and yoga space in my little home office. I keep my exercise mat with a little pillow ready for my daily practices. You don't need a separate room dedicated to this space; you can set up shop anywhere, even in your living room or bedroom. Basically wherever you can fit a yoga mat or blanket.


Here is a link to the program, if you are interested in learning more about it. If you are not in Minnesota, you can google MBSR to find a program close to your area. Most classes are in the evenings, from 6:30-9pm.

http://www.csh.umn.edu/program-areas-section/mindfulness-based-stress-reduction/mbsr-sessions/index.htm

And here is a link that talks about how this program was able to help one type 1 diabetic with her diabetes management.

http://www.takingcharge.csh.umn.edu/explore-healing-practices/what-are-mind-body-therapies

You don't have to have a disease to benefit from this class. In my class of 20 people, there are more "healthy" people in the class than there are ones with illnesses. But there is an added benefit, in my opinion, for those of us who are using this class to assist in managing our health conditions and the stress that comes from having a health condition.

I am excited by how much I am learning and what I will be able to do by the end of this class, and I believe this is a great complimentary care to the regular medical care I receive. I'll keep you posted!

Just a reminder, I am not a health professional and am not offering health advice. I'm just talking about my own daily experiences.

Friday, April 4, 2014

Switching to a different pump.

**Some of this info is repetitive to my previous post- but it's relevant to this post's topic so bear with me. **

I've been having some weird pancreatic functioning the last few days. You might think that's weird to say, since I have type 1 diabetes. But it is true. I've suspected for a while now that my own pancreas was still producing insulin, as I was having many unexplained low blood sugars. The last two days, I've had insulin delivery suspended most of this time and even though I ate normal (carbs and all), I've had down arrows on my CGM and low blood sugars. At my last endocrinologist appointment on St. Patricks day, my suspicion was confirmed. My c-peptide test showed I am still making insulin. I am one of those strange type 1s that makes enough insulin that if I only ate very small amount of carbs, my pancreas would likely be able to make enough insulin to cover it on its own. It would have to be a very small amount of carbs though. My physician said it might still be the "honeymoon phase," but that is pretty rare to still have 4 years after diagnosis. It is possible I may have this remaining functioning forever, or I might not. Only time will tell.

I received my new black Dexcom CGM today. My previous one is out of warranty. It was pink. I liked the pink, but I didn't like that at work, people would mistake it for a game or an iPod. I decided that the next one I got would be plain black.

In pump news, I am planning to switch from the Omnipod to the Animas Ping. My insurance is processing and reviewing the prior authorization request right now, so fingers crossed.

Here are the answers to a few questions I've been asked:

1. Why are you switching?
Because after OmniPod released its updated model last year, replacing the previous model, I've had nothing but problems with the new one. I know some people that have the OmniPod have not had issues. But that is not the case for me. I've had 14 documented pod failures since last fall, 7 of them have been this year. It has become a source of stress for me and I feel it is unreliable. After many calls placed to the company (after each pod failure), they were never able to help me. They would replace the defective pod but not able to explain why it continued to fail all the time. And I was losing a lot of insulin as a result of the pod failures. After discussing with my endo last month, he advised me most of his a OmniPod patients have been complaining to him about the same issue, and he advised me to consider switching to a different pump. We set up an appointment with the CDE to go over my options.

2. Why the Animas Ping?
I looked at the newest Medtronic release, the T-Slim and the Animas Ping. My physician stated he does not like the new Medtronic pump, as he says the built in CGM is not good. He said it reads inaccurately often. He recommended either the T-Slim or the Ping. The T-Slim was neat, but not for me. I didn't like the touch screen, nor the number of confirmation screens you have to go through to complete an action. I also didn't like that it didn't have a remote control to bolus with (like the Ping does). So every time when I would want to bolus or anything, I'd have to pull the pump from wherever it was strapped (leg strap for when wearing a dress or in bra). With the Ping I would be able to bolus from the glucose meter, not having to touch the actual pump. But the big deciding factor for me was that the new Ping/Dexcom CGM integrated pump is supposed to come out this year (allegedly) in the U.S. So I am excited about this technology.

Since I have already met my out of pocket for 2014, it is a good time to get the new pump. So fingers crossed the PA flies through insurance with no problems.

So that's the latest in the techy stuff.

I've got more to talk about but I'll save it for the next post.