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I'm a glass-half-full type 1 diabetic/celiac with a C5 spinal cord injury and life-altering allergies. I was diagnosed with type 1 diabetes, grave's disease and celiac disease in 2010, a spinal cord injury resulting in a spinal cord fusion at the C5 level in 2012 (resulting in chronic pain and life-long physical restrictions) and bad ass allergies in 2013. I believe having a positive attitude is the only way to live with disease and injury. I also believe that life doesn't have to be PERFECT for it to be WONDERFUL. Disease and injuries are expensive, so I live a frugal yet full life (I'm a fru"GAL"!) Please know I am NOT any sort of professional and am not giving professional advice. 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.

Tuesday, March 18, 2014

All in a Monday.

Yesterday was St. Patrick’s Day and it was also the day I had an appointment scheduled with my endo to review my 6 month blood work. I was happy that despite going through a very rough personal life since my last blood work in October 2013, my A1c only went up .2 points to 5.9. Since my last A1c, I lost a loved one, ate my way through 5 holidays, started a new work contract, and had my beloved sweet dog get diagnosed with terminal, aggressive cancer a week before Christmas. Let’s just say I wasn’t exactly in take-the-best-care-of-yourself mode. My stress levels were through the roof; not since my 3 auto-immune diagnoses in 2010 has my stress level been so high.

BP was a little high for me- 120/84, but I think that's because I was so frazzled trying to drive down the streets and find parking in St. Paul on ST. PATRICK'S DAY. The whole damn town is a party beginning at 9am. My clinic is located directly next to the slew of Irish pubs. It took me 35 minutes just to get into the parking ramp because of all the drunk leprachauns running around the streets and blocking the green lights, and all the streets that were closed or suddenly became ONE WAY in order to accommodate all the pedestrians.

The good news, my cholesterol levels and triglycerides were all excellent. My thyroid levels, however, were out of range, meaning a reduction in my Levothyroxine dosage. And my weight was decent, at 122 lbs, especially after the holidays, a long brutal winter, and very little exercise.

And a real interesting outcome- my C-Peptide levels show my body is still producing low amounts of insulin. The level has not changed since my diagnosis. Interesting, because when I was diagnosed 4 years ago, they told me I was in the “honeymoon phase” and that could last a year. Well, 4 years later I still have the same level of insulin production. Actually, between the first and second year of having type 1, my C-Peptide levels went UP. CRAZY, right???? I know that no one, including my physician, can answer this, but I wonder if I will keep producing insulin forever. What if? I believe anything can happen!

As you know I use the Omnipod insulin pump. It’s been how I’ve controlled my diabetes since diagnosis. I’ve never done MDI and I’ve never used a different pump. But recently (meaning in the last 9 months), I’ve been having A LOT of issues with my Omnipod pump. Technical issues- where the pump repeatedly fails, and also customer service issues- where I cannot get ANYONE to help me when I’ve called. I’ve placed 18 calls to them since last September to ask for help. So many pod failures- 13 that I’ve documented and reported to the company- in a short period of time. So much insulin lost as a result of the pod failures. And feeling as though I am not getting any assistance whatsoever when I call Insulet/Omnipod’s customer service. I have been reduced to tears more than once after getting off the telephone with their “customer service” department. I took my complaint to my CDE, who took it to her sales rep contacts at Insulet, who escalated it to the regional sales director in my area. I was told a manager in Insulet’s customer service department was special handling my case and all I needed to do was call and ask for her when I called or ask for another on-duty manager in her absence. So I did call, and asked for her, but she was out of the office. I was told by the customer service representative, who kept putting me on hold to try to find a manager, that the available on-duty managers were unwilling to take the call and they just told the customer service rep to “pass on a message to me from them.” Which by the way, didn’t address ANY of the questions I had asked about the pump malfunctioning or about receiving possible reimbursement for lost insulin. I can’t tell you how many unreturned calls to them I have placed. The customer service has been horrendous. I hang up with them and think Somebody shoot me; I can’t deal with them anymore.

Long story, but my endo told me that just about EVERY patient of his on the Omnipod has complained to him about repeated, ongoing pod failures since the release of their updated pump last year. He doesn’t know what is going on with them, but feels there is definitely an issue with the current model of Omnipod. I asked his opinion on the newest Medtronic 522 pump, but stated he does not like the CGM that is in the pump; states it is still inaccurate compared to the Dexcom G4. He actually recommended I take a closer look at the T-Slim pump, as he has received good feedback from his patients who use it.

I see the CDE this Thursday to discuss my pump questions. I am not sure whether I will switch from the Omnipod right this second. I will switch from them at some point. Firstly, I have several months’ worth of Omnipod supplies I need to use up before I switch to another pump. Also, I’d like to read more d-blogs and obtain more opinions from other T1’s who use different pumps to get their opinions.

So, all in all, the endo visit was good. I like my endo. He’s a bit of a wise ass, which I appreciate.

I’m in bed fighting an upper respiratory infection and wheezing, coughing my brains out today. I have covered my face, nose, lips and forehead with Aquaphor Healing Ointment because everything is so chapped from rubbing Kleenex against it (I swear it is the ONLY thing that works on my chapped skin). Sorry, no pictures. I have only left my bed to eat, go to the bathroom, and take care of my sweet doggy. Not to mention, I have man-voice right now, real deeeep. I have finally caught up on weeks’ worth of recorded Dr. Phil. I’m on the Z-pak, so I’m sure in a few days I will feel spiffy again.


Sunday, March 16, 2014

"A Day in the Life" Follow Along with Pics

This is just a day in my regular weekday life. From day to day, Monday through Friday, not much really varies. Here’s a day in the life, pieced together, in pictures.

My alarm goes off at 5:00am. On mornings like today when it’s bitter cold outside of the covers, I might lay there for a few minutes to enjoy the warmth just a little longer. Upon opening my eyes, I look at my Dexcom to get an idea of where things were at. I did check my blood sugar in the middle of the night and I bolused down a 133 blood sugar.



I feed Bella the Corgi and take her out to potty. Then I meander my way to the bathroom to start getting ready. This is what 5am looks like. No makeup; tired as hell.



I grab some of my freshly made vegetable juice to sip on the way to work.



Every morning I am in my car by 5:50am. It is still dark out, but luckily there isn’t much traffic at that time of morning. However the roads still suck because of all the ice and snow.On the way to work, I stopped at for coffee. Medium decaf soy latte with ½ shot of vanilla.



This is my work place at about 6:30am.



Working by the little light of my desk lamp. I get to work while it is still dark, and the lights are still out. It’s peaceful and I get the most work done at this time of the day.



This is what it looks like outside once the darkness has lifted.



My work bag. It has lots of room in it to carry a laptop, magazines, personal items, lunch bag, bottle(s) of water, etc. It is black with a shamrock green interior. I love this bag! I use one on wheels because of my back issues. I put lots of snacks in it, diabetes supplies, my lunch bag, and magazines. I use one on wheels, because it gets too heavy to carry with a purse, too. With my ongoing back pain, I can’t carry a work back unless it is on wheels.



Later, I take a quick bathroom break and upon passing the big mirror in the bathroom, I realize that both of my devices (CGM and Omnipod) are very visible under my shirt. Bummer. I try not to showcase them, although from time to time, it does happen.



Throughout the day, I check by blood sugar about every 2 hrs. I keep an “informal” system of tracking my bg when I am at work: I write the times down on a large sticky note, and record the reading. This is a great visual reminder to me to help me not forget to check it every two hours when I am busy at work. It also helps me spot trends in a simplistic way. At the end of the day, I toss the sticky and start a new one the next day. Here is a picture of that, although I do not know why my BGs were running so much higher today than is usual. Oh well. That’s Diabetes!



I like to decorate diabetes whenever possible. On this day, I colored and then cut out a little pink heart for my lancet bottle. Other times, I love to decorate my pod with animal print stickers and rhinestones. Why not?



I forgot to take a picture of my breakfast, snacks and lunches, but what I can tell you is I rotate between eating a 2-egg white scramble with vegetables in it and a ½ baked sweet potato (plain) with maybe ¼ of an avocado chopped up and sprinkled on top of the eggs. OR I will have a bowl of organic, gluten-free oatmeal (I use EcoPlanet brand in Maple flavor), with a tablespoon of organic apple butter swirled in, ¼ cup raw walnuts, almond milk IF I have any in the fridge, and a small squirt (maybe a teaspoon) of agave nectar. I bolus and then wait 20 minutes to begin eating the oatmeal.

My work day ends at 3:00pm, and I drive straight home because my dog needs to go potty by then and can’t hold it any longer. If I have errands to run/shopping to do, it gets done after I’ve had a chance to run home first. The dog comes first!

Once I’m home, I change out of my clothes and into my jammies , robe and slippers. I usually put my hair up on top of my head or in a ponytail to get it out of the way. I sit with my dog and do some quiet reading of the new stories online, or maybe read a couple chapters of the book I’m reading.

I make time to do my ongoing physical therapy exercises; approx. 30 minutes.

Then I get up, make my breakfast and lunch for the next day, pack snacks, clean the dishes, and make supper. I double check to make sure everything I need is in my work bag and purse (work ID, keys, all diabetes supplies, tea thermos, etc. )Then I shower, pick out my clothes (including accessories and shoes) for the next day, and essentially wind down to get ready for bed. I go to bed fairly early.

So there you have it. Not too interesting, but it works for me. This girl runs on routine.

Sunday, February 23, 2014

10 Random Facts About Me.

I thought I'd return to my blog with a fun, light-hearted post. I don't think I have a lot of interesting factoids, but here are a few I came up with.

1. I grew up on a family fruit farm.

2. I am very organized. My drawers are stacked and organized in a certain way, my closet is organized by rainbow-order, and every food cupboard is organized by category and things must be facing forward. I don't care if your house is messy or cluttered,that doesn't bother me, but if mine is I can't focus on anything until it is fixed.

3. My current A1c is 5.7. I am due for another check soon.

4. I am sensitive to loud noise- kids screaming, loud vacuums, blow dryers, loud tv volumes, etc. I buy appliances that are "quiet" models.

5. I come from a very large extended family.

6. I've used anti-wrinkle creams since I was 23 years old (I'm in my 30s now!). I am grateful to the department store woman who told me to start back then.

7. I have debilitating social anxiety.

8. My goal is to move to a warm climate while I am still young. I HATE snow and cold weather.

9. I've never weighed 130 lbs and I've never really "dieted." I have always followed the rule of moderation. I eat what I want, just not too much. I believe in eating something until you have reached the point of diminishing returns- when the next bite doesn't taste as good as the first- stop eating it, you are probably no longer hungry and are continuing to eat the food for the wrong reason (boredom, camaraderie because everyone else continues to nibble, it was expensive/not too much left/don't want to waste it, etc.)

10. I am very frugal with my money, but I am not cheap. Here's how I define it. Frugal means it only affects you (cutting back on purchases, writing out a monthly budget and following it, meal planning to avoid impulse food shopping, waiting to purchase something until you get a rock bottom price, buying most things 2nd hand, not wasting, etc.). Cheap is when it affects others (not tipping well, re gifting, etc.)

I'm in the process of drafting my next post, "A Day in the Life." It will take you through an average day with me! See you soon x0x0

Tuesday, February 4, 2014

I'm back...

I took a bloggy break to manage life stuff, but I'll have a post up later today...