Tuesday, January 31

I'm not feeling IT today. Whatever IT is. IT tends to be the positive vibe and I'm just not there today. I spilled about a 1/3 of my shake all over the passenger seat in the van when I dropped off Annyka this morning. And I had nothing except newspaper to clean it up. I'm growly about that, then when I got to work, I didn't even feel like eating it.

I want cheese today. Specifically nacho cheese dip. It's not going to happen, but I think because there doesn't seem to be a good substitute for cheese, I'm really craving and mourning it right now. I also want garlic bread because I can smell that crap from our cafeteria.

Although I am eating, a lot of the time I don't feel like I'm getting full. I'm hoping that is a transitional, temporary thing, but right now it's pretty tough. I need to be running, but I just don't feel like I have the energy. I don't feel tired really, just hungry. Snacking on almonds aren't getting the job done.

Anyway, lunch yesterday was the aforementioned salad with lemon juice/olive oil dressing. Dinner was taco salad and an apple while everyone else at my meeting had spaghetti and garlic bread.

Tonight, I'd like to take Annyka down to the Super Bowl Village so I'll probably just be hungry. I have no money to get food while we're out and I don't have much with me to take. Maybe I'll have some of my shake left to drink.

Sorry to be so down, but I'm feeling the weight of all this today.

How do you make a salad dressing...

...that is dairy-free, egg-free, gluten-free and vinegar-free? Ranch often has gluten based ingredients + dairy is a problem. Caesar has eggs. And everything else is vinegar.

It's been a challenge, but it can be done. I tried just infused olive oil last night. It was a little flat. It needed some acid (I knew this from watching too much Food Network).

Today I've got lemon juice and olive oil. Better, but I need to branch out with the juices - cranberry juice maybe or orange.... This could get interesting.

Sunday, January 29

I got to have my first eating out experiences with dietary restrictions. Saturday we went to Qdoba for dinner before a movie. I got a naked burrito. Yum. I was surprisingly full. And I didn't even get any popcorn at the movies. I love popcorn at the movies, but the last few times I've had it, it's upset my stomach.

This morning we went to Cracker Barrel for brunch. I got the grilled chicken tenderloins with green beans, baby carrots and fries. I realize the veggies could have been cooked in a little butter, but that's a minor evil.

We then headed downtown to the Super Bowl Village and NFL Experience. I took my own snacks with me. They said no "outside food or drink" but I snuck some in anyway. I had a chocolate snack bar and almonds. I also had some Fritos in honor national corn chip day! In the evening we had to go pick up my daughter from her dad's in Ohio, so we were on the road. I had a Hardee's thickburger with mushrooms - no bun, no cheese, no condiments. I also had a spinach salad with olive oil, craisins and sunflower seeds. It wasn't too bad. It needed a little acid, but next time I'll add some fruit juice to the oil.

Overall, I feel like it was a pretty successful weekend - at least foodwise. My house is still a disaster and desperately needs cleaned, but I'll get to that....eventually.

Friday, January 27

There was a time when I didn't really understand why people got so worked up about Fridays and that TGIF business. But then my job got freaking INSANE, my volunteering became ridiculously political and vicious and stopped sleeping as much as I need to.

I'm so ready for the weekend...but no so I can party and get crazy - so I can rest.

Today I didn't eat all that well. I had my chocolate shakeology for breakfast, blended with a banana and some super-green powder. I had some almonds, V8 and rice cake with nutella for snacks, but I didn't eat any actual lunch. Back in the day I actually had to look for things to do. Now, if I get through a week without having to work from home or skip a lunch I'm celebrating.

I did do some cooking this evening though. I made soft tacos - ground turkey with homemade seasoning and green chilies, refried beans, lettuce, tomatoes, onions and some plain soy yogurt mixed with taco sauce I can eat on corn tortillas. Pretty good and filling.

I also made some turkey "sausage." I took some plain ground turkey (85/15) and mixed in minced onions, smoked paprika, garlic powder, a little sage and thyme and some salt & pepper. I mixed it all together then rolled it and wrapped it tightly in Saran wrap. It's in the freezer now. I'm not sure what exactly I'm going to do with it yet, but it seemed like something I might want eventually. I'll let you know how it turns out.

Pleasantly surprised...

I went on my first gluten-free, dairy-free grocery shopping trip yesterday. Fun times. I hit the Meijer by my house. I was actually pleasantly surprised by the selection. There were allergen-free options in various places throughout the store. I spent way more than I normally would on a regular shopping trip, but I am having to restock a lot of things - pasta, rice, other grains, flours, condiments, etc. Plus I haven't done a big shopping trip since before Christmas so I also had to buy plenty of meat.

So here are the meals I have planned for the next several days. Many of my lunches will be leftovers of dinner:

Pork chops with mushrooms and some misc side dishes (veggies and rice) - I haven't the details of the mushroom part, but I'll figure something out. The whole no-yeast = nothing fermented thing is really through me for a loop. I only fell in love with vinegars a few years ago, and now they're back out of my life!
Enchilada Casserole made with corn tortillas, some sort of homemade tomato-based sauce and beans - obviously no cheese for me. :(
Curried Lentils and Rice
Stir-fry with rice noodles this will include various veggies, garlic, some sort of meat, etc. It's kind of up in the air right now.
Tuna Casserole again, I haven't figured out the details, but I 'll figure something out (are you catching a theme to how I cook)
Southwestern Lime Chicken Tacos 
Chili-topped Baked Potatoes the chili will be homemade
Meatloaf

I think one of my biggest fears is that I will not be able to come up with meals on the fly the way I do now. I usually have a general plan of meal ideas so I can shop, but whatever leftovers I have usually get thrown into other impromptu meals. I'll find a way though. I always have.

More about today's meals later. Back to work...

 

Thursday, January 26

We were all so responsible last night...going to bed at respectable bedtimes. Both kids were in bed by 8:15, I was in bed by 10:30 and scott was in bed....well, it wasn't too late. And I didn't turn the alarm on last night. We woke up at 7:05. One child (the video-game obsessed boy) was already dressed so that he could play on the iPad - for once I appreciated his devotion to Plants vs. Zombies (who comes up with these games?). The other, I had to drag out of bed.

But we managed to get showered, dressed, grab food and get out of the house by 7:34 and at school on time. A feat if I do say so myself. I didn't manage to make it to work on time, but I've worked extra this week.

Breakfast today is once again, chocolate Shakeology. Lunch will be leftover green beans, taters and smokies.
The dinner plan is pizza soup. It's not quite 100% gluten-free (again stupid MSG in the sausage), but it's a transition. I don't have a concrete recipe, but it's something like this:


PIZZA SOUP

• Italian sausage (out of the casing), browned
• Crushed tomatoes
• garlic
• diced bell peppers
• diced onions
• italian seasoning
• mushrooms if we have any
• Top with cheese if you aren't sensitive to it - I won't be doing that though.

One of the things I've been worrying about lately is how I portray my attitude to my diet restrictions. I don't want to be the friend/family member that is always forcing everyone else to follow their restrictions. I want to be positive about these changes in my life and try my best to accommodate to whatever situation I'm in rather than expect everyone else to accommodate me. I know someone who will refuse to attend an event and/or complain the entire time if the menu is not gluten-free. That's not anyone's problem but me. I do expect a certain level of support in my own home, but outside my home, it's my challenge. Whether that means bringing my food or eating in advance of an event, that is a burden I will bear - hopefully with grace.

If you or your child face diet restrictions, how do you handle them in groups or in public?

Later I will share my meal ideas for the next several days.

Wednesday, January 25

I took a personal hour this morning and got a massage today so I started the day off right, but that got pretty much ruined when several other things were thrown at me at work today and I worked through my lunch break. But at least I ate. I had a shakeology chocolate shake made with soy milk for breakfast. Lunch was arroz con pollo with black beans and a V8.
Now it's time for dinner. I've made steamed fingerling potatoes, green beans, cipollini onions and little smokies for dinner. I know that the little smokies have MSG in them so they are technically not gluten-free, but I don't have a lot of options before I get to the store. I was going to go tonight, but we're getting freezing rain/sleet junk and I just don't feel like battling that.
But I am going to sit down and plan a couple weeks of meals after we eat dinner. Til tomorrow...

Tuesday, January 24

We were offered free tickets to an nba game and pregame party. A buffet of hot appetizers was available.I would have eaten before I came but didn't have time.
I ended up with lots of vegetables- carrots, cucumbers, tomatoes and bell peppers - a few nachos,  some buffalo chicken and a plain hot dog. Not great but I'm just getting started.

The next step

It took me about 6 months to become acclimated to life on medications - physically and mentally. During those months of diagnosis and adjustment, I had doctors appointments each week. Complications had manifested in so many ways that I was seeing a DO (my GP), a gynecologist, an ENT, a rheumatologist, a podiatrist and a chiropractor (I may have forgotten some as well!). It felt like every time I went to one of these appointments something else that was wrong would pop up. I was feeling pretty defeated. Oh yeah, and during that time I also fell down the stairs and sprained my ankle. The 500 festival mini marathon rolled around in May. I couldn't run the race. I had signed up in November, but just physically wasn't in a place to run last year. That was heartbreaking. I love races. I love the comraderie and the nervous tension. Plus the sense of accomplishment at the end. But I couldn't do that to my body.

That weekend I decided it was time to get up off my lazy ass and stop letting Sjogrens live my life. So I signed up for a half marathon in Charleston, SC (I completed that two weekends ago) and a couple weeks later I joined Team in Training and trained for another half in October 2011. I also raised a couple thousand dollars for the Leukemia and Lymphoma Society. I made some new friends and I got my energy back.

But it's still been a struggle. I still feel like crap sometimes. In November I started seeing a new chiropractor - one who has worked extensively with autoimmune disorders. Early in January I had blood drawn for a food sensitivity test. I got the results back yesterday.

I am sensitive to several things - the big ones don't really surprise me, but they are going to change my life. I needed those lab results to make the next move and change my eating lifestyle. And it's time to do that.
The big things I have to avoid are:

• Gluten
• Wheat
• Barley
• Mozzarella Cheese
• Casein

But in addition, I also have milder sensitivities to yeast, kidney beans, egg whites, peanuts, peppermint, rye, swiss cheese and yogurt. And for the record, I also found out my thyroid, blood sugar and cholesterol are doing fine.

My current plan is to cut all of those out for the next six months. After that I may consider adding some of the milder sensitivity foods back, but I'm not sure yet. Gluten and most dairy is probably out for good.

The good news is that meats are all fine (as long as they are not processed), fruits and veggies are all okay and rice is still in my diet. Dairy and breads are pretty much gone. I'm kind of excited about the new challenge. I've had a few "Crap, no ice cream?!" moments, but for the most part, I'm looking forward to shopping and figuring out my new plan. Here are my biggest to do items right now:

• Figuring out which restaurants I will be able to eat at. 
• How to fuel my body for athletic endurance - I plan to do my first triathlon this year and mini. Many of my energy foods will no longer be an option.
• What snacks should I keep in the car/at work, etc for those days that I need something quick, but fast food isn't a good option? 
• Will the whole family eat like me? Tonight I plan to pull pretty much everything out of the pantry and reorganize putting the things I can't eat in one place. 
• Where to shop and how much to budget. We already get GREEN Bean Delivery so that helps, but I need to get up to Trader Joe's sometime soon and figure out what my new staples will be and what I can still get at the regular grocery store. 

So now I get to the purpose of this blog. I know my new lifestyle will require more planning than normal. I hope to use this journal to help me do that. It will probably also function as my sounding board and a place to vent some frustration at times. Lastly, I hope that it also may help others who might be facing similar situations. I have a life I enjoy, but I also have some health challenges. I hope to conquer those challenges and incorporate new habits into the life I already have.

Diagnosis is just the beginning

I saw Dr. Valerie Ball on a Tuesday afternoon almost two years ago. I brought a calendar showing the progression of symptoms and she took a look at my very painful glands. And then she asked if I had dry eyes.

When I think about that moment, I still get a little emotional. It was a turning point in my life. The dots were getting connected and someone was actually listening. She sent me for blood work immediately to test my ANA response. In one week, I was at four different hospitals and went through a CT scan and a fine-needle biopsy (to rule out lymphoma or other cancers). My ANA and sed rates cam back off the charts. I also went on antibiotics for over a month and started on steroids - the infection couldn't get out of the glands because they were so inflamed. My next stop was a rheumatologist and 14 more vials of blood for testing.

In September, I had my definitive answer - I have Sjogrens Syndrome. Compared to many of the autoimmunes, Sjogrens is fairly mild. It's not generally life-threatening and more annoying than anything. I did have to start chemotherapy though. I take five pills each Saturday night. I can't drink alcohol on the weekends because the chemo can overtax liver. I have to rest much of the day on Sundays or I will start to feel ill by Tuesday. But I'm not puking my guts out or losing my hair (much). It keeps my inflammation at a managable level. I haven't had parotitis since July 2010. But I won't be considered in remission for another couple years.

In a little over one year, I had my thyroid start malfunctioning, three separate viral infections throughout my body became active and in a six-month period I had three separate biopsies and surgical procedures. They all link back to my immune system going all bat-shit crazy on me. Diagnosis was the end of one road and the beginning of another.

How did I get here?

I'm going to try to start at the beginning and give you a condensed version of how I got here, but I'll warn you in advance...I can be a bit long-winded.

They (you know them, right?) say it takes an average of five years to diagnose an autoimmune disorder. Looking back, mine took closer to 15 years (and I still feel lucky that I got a doctor that finally had the light bulb go on). When I was 19, I went on Accutane for severe acne for six months. I don't think the Accutane caused my autoimmune disorder, but I think it may have "released" it. I started having dry eye symptoms the year after going off of the Accutane. I was also diagnosed with depression around the same time.

For the next 10 years I continued to battle the dry eyes, frequent sinus infections, respiratory allergies, severe acid reflux and a generally upset stomach on a regular basis. After my daughter my was born, my symptoms changed a bit. My allergies calmed down some, the acid reflux all but disappeared (at least the pain did, I still have scarring on my esophagus), and most importantly when Annyka was about 7 months old, I got the first of many infections in my parotid glands.

At the time, I didn't know that's what it was. All I knew was that I had a large (golf-ball sized) hard lump on the side of my neck, under my jaw. I went to two different doctors and was prescribed a couple rounds of antibiotics. It was chalked up to a complication of sinus infection(s). I ended up having to do acupunture and TENS therapy to get rid of it. Over the next five years, I would get these infections a couple times a year, usually on the tail end of a sinus infection. Eventually I figured out it was my salivary glands and that I could treat them at home with heat, mucinex and massage. Antibiotics seldom got rid of them, so I stopped going to the doctor when I got them.

In the summer of 2009, I became extremely fatigued. In May, I ran my first half-maraton (after training for about 6 months). I felt great, but by August, I couldn't walk a mile without having to stop to rest and catch my breath several times. Something was wrong. I was diagnosed with hypothyroidism and started on medication in the fall.

That winter was rough. I was sick with a sinus infection that I just couldn't shake for about 6 weeks and I had three separate incidents of parotitis throughout the winter. I finally started feeling less tired and able to breath again in the spring, but I still didn't feel "normal." In April I asked my doctor to retest my thyroid because I felt off. My appetite didn't feel normal and I just didn't feel like myself. He said "you haven't gained any weight, so everything is probably fine."

The first weekend in June I woke up on a Sunday morning (following a stressful night in the ER with my daughter for a concussion) with a raging infection - fever, aching throughout my body and a very inflamed, hard parotid gland. I'd had enough. I wasn't going back to my GP to be belittled again so I found an ENT. And that's when things started to look up.