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.

Tuesday, July 23, 2013

Hiding diabetes.

Day two of new job.

The extreme tiredness that one experiences when your brain is trying to absorb new info for 8 consecutive hours has set in. I feel like I stuffed 20 lbs of potatoes in a 10 lb sack. I don't think I'm eating enough. I'm definitely not going to bed early enough. And the 1 hr commute home everyday (from city rush hour) is killing me. But I like the job and the people.

My diabetes numbers have been GREAT, but at a price. Since I have been trying to keep my diseases a secret for as long as possible, I have been eating very small amounts of carbs in order to avoid having the CGM beep with highs. So breakfast has been 3 egg whites, no carbs. Lunch has been a salad with almost no dressing. And I have carby snacks and juice boxes on hand when I see I'm dropping below 80. I eat only enough to get it in the low 100s. I have not beeped one time in two days. I only check my blood sugar in the bathroom stall. My pump is currently on my stomach; virtually invisible under the right clothing. No one seems to have noticed anything. People talk to me about normal people things. I felt NORMAL for the first time since being diagnosed with diabetes 3 years ago. I'm enjoying this for as long as I can, because I know as soon as people find out I have diabetes, I will start to hear the stories we've all heard- who they know that has diabetes or died from it. I will get 1000 questions on my diet, diabetic symptoms, my family's health history, and get told how I don't "look" like a diabetic (what does one look like, exactly). I will have judgments placed on me when people see me eating sugary things.

I have had diabetes long enough that I had almost forgotten what it felt like to not have it (or to not be treated like I have it). It's 100% non-disease related conversations. It's like old times. It made me sad and made me really miss my "old" life, the one without diabetes. I want to hang on to people not knowing I have it for as long as possible.

Monday, July 22, 2013

A look in my fridge.

I like to do this blog subject every once in a while, and I wish more bloggers would do this, too. Aren't you curious what other people eat?

I want to show you what this diabetic/celiac/allergic-girl eats.

This is basically what my fridge looks like at the beginning of every week. It's full of veggies, because I do my grocery shopping over the weekend.

A break down of the left and right sides

Nothing too exciting going on in here. On the left, hormone-free eggs (3 dozen), hummus, dairy free cheeses, Zevia soda, tofu, GF tortillas (Rudi's brand), and a few veggies. On the right GF bread (Glutino multi-seed bread), Bragg's liquid aminos, Litehouse dressing, almond milk, Bragg's Braggberry dressing, guacamole salsa, earth balance butter, soy creamer, raw sauerkraut, red hot, ketchup and fresh green juice. Also, a Bragg's organic apple cider vinegar drink, Limeade flavored. It's straight up vinegar and lime juice. I was pulling faces drinking it like the first time I drank tequila. It's not for the faint hearted. But it's so good for you!

In the drawers, just more veggies, organic gala apples and some bagged salad

If you are wondering where the meat is, it's in the freezer. I have chicken sausage in there along with organic chicken breasts.

The green juice was transferred into this for freshness for the day

This is what I put in my green juice I used 2 apples in the batch instead of 3, about 4-5 romaine leaves, 3 cucumbers, 1 broccoli stalk, 3-4 stalks of celery.

I drank it out of a wine glass afterwards

After I cleaned and dried the lettuce, I put everything in bags for the week. I also pre-cleaned and bagged up my individual juicing combinations for quicker juicing this week. I packed my salad for lunch for the next day, too.

Then there was the cleanup from juicing

Lastly, today was my first day at work

I put a potty pad down for my dog, since my drive to work is longer and I didn't want her to have an accident. But apparently the purpose of the potty pad was lost on her.

But at least there were no potty accidents! Today was a good first day. It helped ease some of the worry I had about whether I made the right decision (I need to stop second guessing myself all the time). My mind is fried from cramming so much new information in it. It's time to go sit on the couch and watch some mindless tv.

Sunday, July 21, 2013

New job challenge: Sharing your disease info.

Friday was my last day at my job. I was a little relieved, as this week has been IMPOSSIBLE for me to avoid distractions and get work done. There is something about knowing it's your last week at work- your mind will simply not stay focused anymore. My work peeps were great- they threw me a mini party complete with giftsc and a very sweet card. They bought me Reese's peanut butter cups, since they had seen me eat them before so knew they'd be "safe" (gluten free) for me to eat. I am always humbled and grateful when someone attempts to understand my illnesses. And then someone explained the thought process that went into picking out my gifts- making sure the food stuff was gluten free, and making sure the gift stuff was rubber free. I was blown away. It touched my heart. Especially because I work hard to downplay my illnesses as much as possible; I don't talk about them much at work so most people think my diseases are relatively easy to manage. But clearly people were paying attention and that is just sweet.

One of my supervisors was talking to me near the end of the day on Friday, and what she said was so heartwarming, I almost teared up. She said "I know you have been through a lot, and you have to deal with more challenges everyday than anyone I know, but you do it with such grace. You have every reason to have a bad attitude, but instead you have a positive one. You could be Eyore, but instead choose to be Tigger."

Firstly, to have someone acknowledge that my life is actually hard- wow- I just didn't know that anyone noticed.

I start my new job on Monday. I made the right move, but it still is scary. I have to start over with introducing my diseases to my new team and management- ALWAYS a terrifying thing because I worry whether they will wish they hadn't hired me. I wonder if they will worry whether I'm going to miss a bunch of work, or if my diseases will impact my work quality/quantity, etc. I'm already developing a plan in my head for how to introduce things. My diabetes always introduces itself- I wear an insulin pump visible on my upper arm. It also beeps, as does my Dexcom CGM. There's also the every-two-hour blood sugar checks, so there's really no hiding it for any period of time. But the other things, celiac disease and crazy allergies, I will try to hide for as long as I am able. You know, try to spread out the negative stuff that I don't like to highlight, instead of giving it all at once. Not giving out any unnecessary information about myself that I don't need to. I want people to get to know ME FOR ME, not me as related to my illnesses. I can bring my own food everyday- lots of people pack their lunches everyday. No one needs to know I can't have gluten. They will just think I'm a very healthy eater (which I am!). If someone offers me something with gluten, I'll just say no thank you. They don't need the gory details why I can't have it. I think I'd rather have someone think I'm a picky eater than know I have a disease that prevents me from eating it. In time, sure, I'll probably spill the beans. But at least while I'm new, I'm choosing to lay low. I'd like to put off being known as the "sick person" at work for as long as possible. If I had my way, my employer and coworkers wouldn't know about any of my illnesses, ever.

I DON'T want to be viewed as a problem when I start a new job. I am happy that I succeeded in not coming across that way at my most recent job- that I was liked and viewed highly; that my work was praised. I worked hard to have my work and my accomplishments outshine my diseases.

My insurance runs through the end of the month, at which point I will begin my $600/month COBRA payments to continue my insurance (OUCH). It will mainly be used to pay for my prescriptions. I won't be using it to pay for doctor visits, since I won't be able to take time off for the next 5 months (the joy of being a contract worker with no employee benefits, including vacation time). My prescriptions would cost me MORE than my COBRA payments each month, so I'm still making out ahead by paying for COBRA. Since I met my out-of-pocket maximum for the year a long time ago, all of my prescriptions are covered at 100%. But this week when I picked up one of my prescriptions- a cream I have to use for skin allergy reactions- I looked at the cash price of the tube of cream. It was $497.99. WHHAAAAAT! Add to that my monthly insulin ($350), test strips ($339), and about 4 other prescriptions I pick up monthly (that cost less), it adds up to A LOT of dough. Yowzer. It ain't cheap being sick.

I'm starting back up on juicing tomorrow. I went NUTS at the farmer's market this morning; purchasing 5 bags worth of fresh, pesticide-free produce for juicing. I'm not sure it's actually cheaper to get stuff at my farmer's market than at the grocery store. But I like to support the local farmers so if I have to pay a little extra so be it. I went as soon as I woke up- I threw on a tee shirt and shorts, threw my dirty hair up in a ponytail, slipped on some sandals and sunglasses and off I went. I wanted to get there early before the selection was gone. I used to juice on a regular basis, but fell away from it because it is time intensive and somewhat expensive to do. I'd like to say that I'm going to stay committed to making fresh vegetable juice every morning before work, but that means I'd have to commit to getting up probably 1/2 hour earlier and I just don't know how likely that is. I might make it the night before, even though I know that the juice loses some of it's nutrients overnight.

Tomorrow is Sunday, which means it's prep and chop day. The day I make ALL meals for the entire work week- breakfasts (usually an egg bake that will last all week), lunches and suppers. I also pre-measure out all snacks. So I'll likely sleep in, start the morning with a cup of decaf coffee or tea and a nice egg white scramble. Maybe do some light reading and relaxing. Then it's turn the music up time and start cookin'! Later in the day I will put together a few outfits for the week, and then stock my work bag with glucose sources, my own pens and office supplies (since I can't use ones with rubber grips) and everything else I might need. It sure takes some of the stress off when you are prepared ahead of time.

Tuesday, July 9, 2013

Change is good.

A big change took place on Monday. I put my notice in at my current job. It was a hard decision, as you will see why. I traded in my full-time, regular employment status position for a contract position at another company. What this means is that I will not have any benefits with my new job- no vacation time, no health insurance. And the contract only runs through the end of the year. It was something I thought over very very carefully. I made the decision in order to improve my financial situation. You see, although I am frugal and have "gotten by"at my last job, things have been VERY tight and I've had to cut many things out of my life that I enjoy in order to "get by." When I took my current job, I did so after a period of unemployment and needed income and insurance. However, it was a very very large cut in pay from what I have previously been making. It was a fine job, working for nice people, but I discovered it was too low skill and sort of very boring, along with low pay. I missed the challenge of my previous work. This new contract position I accepted is making a substantially higher income; in the same range as I am used to making. The trade off is that I will have to pay for COBRA continuation of benefits at the hefty price of $600/month. There is a very good chance there will be an opportunity to turn this into a regular employee status position by the end of the year, which I will work hard to do.

Now as a person with T1 diabetes, celiac disease, grave's disease, allergies and recovering from a spinal cord injury, it is terrifying to take a job that does not have health insurance OR vacation/sick days (or days off for dr appointments). COBRA is only available for 18 months, which means I will have to work my TAIL off to turn this position into something permanent, or find something else within the company that is permanent. The biggest risk would be coming to the end of the contract without having an opportunity for either another contract or a permanent position- I would not be able to afford the COBRA if I had no employment. This is a very scary thing for an unmarried chica like myself who does not have a spouse's insurance plan (or income) as backup. The other risk of course is that I NEED to maintain perfect health for the next 5 months, or at least plan on going into work sick if I do get sick.

Sometimes you have to take a gamble in life in order to get ahead. I realized that there wasn't opportunity for growth in my current position. I don't want to struggle financially or have things always be "tight." I don't want to always carry medical debt. I just simply need to make more money.

I am a person who has a lot of faith and I believe this situation WILL work. I have faith in myself that I will have a full time employment offer by the end of the year.

It's a big decision, a little scary if I think too much into it because of the risks, but I need to just focus on the positive. I hope you all will be praying for me!

Everything has been pretty good this week. Blood sugars are hanging steady, allergies are sort of in check (except tonight when I had the crazy idea to bear hug my dog, rubbing my whole face and neck in her face and ending up with hives all over my neck, face, and arms). I know better than that. Nothing that a bath and a Benadryl can't fix.

Tonight I made a quick dinner- flash fried some organic chicken breasts in coconut oil with salt, pepper and garlic powder and then splashed on just a little Bragg's Liquid Aminos (it's a gluten free soy sauce) on top. I ate that with a side of green beans and then snacked on a few organic corn tortilla chips with bean dip. Dessert is strawberries sliced up in a bowl and some brewed iced herbal (decaf) tea from Teavana.

Tomorrow after work I have a friend coming over who wants some assistance in meal planning for the week. I've been working on a take-home instruction list for him tonight. He likes the idea of doing all the weekly cooking on Sunday so your weeknights after work are freed up. His criteria is that it needs to be simple, quick recipes that are also very healthy and cover all the food groups. No problem at all; I do that every week anyway. I'm making him a sample meal to try as well.

Time to call it a night. I've been go go going all day and it's time to put my feet up. :)

Sunday, July 7, 2013

Gluten Free Egg Mcmuffin.

While I usually prefer to eat low-carb, on the one of the weekend days (usually Saturday but this weekend it is Sunday) I will usually allow myself to indulge a little. Not go overboard and binge on carbs, but I allow myself to eat more carbs than I normally would during the week. Today my indulgence was making a gluten free egg Mcmuffin.

Here are the ingredients. I started with spraying my pan with non-stick gluten free olive oil spray to fry my egg and lunch meat. I use hormone-free/antibiotic free egg. For meat, I use Castlewood brand (found at Sam's Club), because it is gluten free and lower in sodium and fat. Since I try to steer clear of dairy as much as possible, I use Go Veggie! cheese slices. To me, they taste just like regular cheese slices with a slight texture difference. I use Food For Life gluten free multi-seed english muffins. These come in many different flavors, so if you don't like seeds you can get brown rice ones or plain white ones. I get these at Lakewinds, my local co-op but I'm sure Whole Foods sells them, too. After toasting, I lightly butter them with Earth Balance Organic Whipped buttery spread (dairy and gluten free).

The thing I learned about gluten free english muffins is that they don't really brown when toasting. I toasted mine twice at the highest level on the toaster and got mild brown-y toast-y spots. However, even though they may not look toasted, they are as crunchy and tasty the way that an english muffin should be.

Afterwards, I assembled everything and voila. A filling and tasty breakfast for 40g of carb.

Friday, July 5, 2013

A day in the life of a type 1 diabetic celiac with life-altering allergies.

Do you ever look at the people around you and wonder what their story is? How people (like us) can look so normal and healthy on the outside that most people would never question or guess there was anything wrong with us. I have heard this statement so many times, “Wow, you LOOK so healthy; I never would have guessed that you have XXX (fill in the blank here- spinal cord injury/diabetes/celiac disease/autoimmune thyroid disease/life-altering allergies)." I am amazed myself that I can make it look so easy to others that they don't know I have multiple diseases. It's a skill.

So what’s it like to be a type 1 diabetic/celiac with life-altering allergies? It’s a very analytical lifestyle. If you are a diabetic, you are analyzing carbs and blood sugar trends. If you are celiac, you are analyzing menus, ingredients, cross-contamination risks. If you are a person with severe allergies, you are analyzing your environment, ingredients, etc. If you are all of these, like me, you are analyzing EVERYTHING.

Having severe allergies to all detergents (in bath soaps, shampoos/conditioners, household cleaners, hair products, laundry products, makeup, sunscreen, deodrant, eye drops, self tanners), many adhesives and all antibiotic ointments, and carba-mix which is rubber (think rubber gripped pens, soles of shoes, spatulas, all rubber gloves, cell phone bumpers, rubber bands, hoses, certain ear phone cords, erasers, cavity fillings, just to name a few) has dramatically altered my life. I also have diagnosed allergies to dairy and raw onion, although these are mild on the allergy scale and I can sometimes still eat them without consequences as long it is not an everyday thing.

I’ve talked a lot on my blog about diabetes and celiac disease, and some of the challenges I face having BOTH of these diseases (that do not place nice together). But today I’d like to talk a little about how having severe allergies to things affects my life. It’s going to be a story, in pictures.

Let’s begin with what I am allergic to: (click on any picture to enlarge)
It's 2 pages of allergens that I must look for before buying a product. ANY product.

It's every month going to the special website you've been assigned to go to by your dermatologist and printing off the most current list of products that are SAFE for you to use based on your unique combination of allergies. This list is 111 pages long and is reallly hard to sneak-print at work.

You bring this crazy-big document with you every time you go shopping, and you use tab stickies to organize sections for easier finding of product categories:

Here are some of the products that are safe for me.
Household cleaners- Seventh Generation- these particular ones only, not the entire Seventh Generation line of products. Free and Clear is the only shower gel/soap I am able to use. It doubles as my hand soap, since I am unable to use all hand soaps. This holds true when I leave my house- I must carry a small travel size refillable container of my soap, as I cannot use soaps in public restrooms, at work, or at other people's houses.

Acure lotions, Rusk W8less hairspray, Sebastian hairspray, Mineral Fusion shampoo and conditioner, Acure shampoo and conditioner, Pure Silk shaving cream. Again, these particular scents and formulas only; not all products of one brand are safe.

This is the only safe nail polish I can use. All colors in this Sally Hansen Complete Manicure line are safe.

So what happens if I come in contact with with an allergen? In addition to sometimes having wheezing followed by an asthma attack (I now carry a rescue inhaler in my purse), I always break out all over my body in red, painful bumps that break open, ooze, bleed and itch like there is no tomorrow. They become so painful that even having clothing come in contact with them is painful. I have a cream I put on them to help them heal, but healing still takes several weeks. Things can get a little dicey if I accidently touch a surface that has one of the allergens on it, and then touch my arm or face or something. So I carry antibacterial wipes, Huggies unscented wipes and antibacterial hand gel with me at all times to wipe my hands off after touching communal things (like the fridge or microwave handles at work.

Here is what a recent outbreak looked like. It's a little hard to see in the iPhone pictures taken at work. Here are the ones visible on my neck and chest. Multiply that by your whole body and you get the picture. These pictures were taken before they started breaking open and bleeding.

All of my autoimmune diseases are challenging and life altering, and I do my best to down play each of them as much as possible. Despite it all, I think I still have found a way to lead a pretty nice life, based on a "different" normal than other people. I have been able to meet others in all of my different disease populations.

Sure, when I travel now I have to bring a ton of extra garbage with me. OH WELL. I've got my carry on cooler for my insulin and gluten free food, and my other carry on will be jammed packed full of my 3oz containers of special shampoo, conditioner, face wash, body wash, and lotion.

What's the other alternative- check out of life and be depressed everyday? I tried that before and it wasn't very fun. It took some time to develop confidence and not feel as though I was a burden to everyone around me. As you well know, disease can be very isolating. And that's not to say I don't feel self-conscious sometimes about all the special accommodations I need for food and everything else (like having to ask my work to not use rubber bands on any of my work). My work has been gracious and very kind. But not everyone in every area of my life is always accommodating. I think some people think that avoiding allergens or eating GF due to celiac disease is more a choice than a requirement. But I've learned to work around those situations. I'm a pro now. I'm actually thinking about hosting a dinner party for my friends at my house FOR THE FIRST TIME since being diagnosed with my first disease(2010!!!). Things are easier if they are at my house; I have more control over things and also I don't have to tote around a bunch of extra things. Maybe I'm just getting a little ahead of myself. I'm just going to take things one day at a time.