Declined

I had a few interesting health related appointments in the past few weeks. The first was with my Primary Care Pysician who I haven't seen since all of my health issues began a year ago. This visit was kind of a bench mark for me. It gave me the opportunity to look back at where I was a year ago and take stock of where I've gone on this journey. I had hoped that this would be a positive kind of thing full of hope and answers but disease doesn't work that way. The second was giving my health information for life insurance purposes which highlighted my unique situation and left me wondering - what chances will the mathematicians and underwriters give me to survive.

Last April I was blissfully ignorant that there was a Sarcoidosis brain lesion pressing on my Trigeminal Nerve. I had yet to watch a monitor while a needle went into my spinal column or be told that I was a "slow drip". I hadn't had my first panic attack yet or any of the six MRI's that were to come. I had no idea that shortly medication would turn me into a basketcase and I would become uncognizable to myself and those around me. And perhaps the most sad: that a year later I would still struggle with those feelings and loose people I loved in the process.

Thats the part of the process I wasn't barganing for - time. That it might take time for me to get well or get to a place where I feel well because the two may not be the same. And so maybe this is an exercise in patience and stamina. To remind me that what doesn't kill you makes you stronger. Or maybe to teach me I do have some will power - A will to continue on and try and find any way to get better. If you had told me last April I would have seen a doctor in Baltimore or a chiropractor or a holistic practitioner I may have told you you were the basket case!

And the insurance people - they declined me. But not for sarcoidosis of the brain just for having sarcoidosis in general. I lost that application six years ago at my initial diagnosis. Its their loss. Because I've been assured by several specialists and physicians that this disease is not going to kill me...and that can only make me stronger.

Another week down and I did pretty good. I find myself eating Jimmy John's Unwiches and Chipotle Burrito Bowls (I like the fact that their produce is largely organic.). Herbie and I managed to polish off a bag or Tostitos and Jar of Salsa but I was excited to learn that on the Gluten/Dairy Free I can have corn. I'll be eating a lot of Mexican I think.

I did have one major let down. I thought I was being all smart and we ordered KFC but GRILLED! The next day though I checked their website and almost every item listed Gluten. I'm not sure if its because of cross contamination or if its something they use to season the chicken but that was a major bummer. You win some and lose some I guess.

In the win column though was my discovery that I can eat Miss Meringue cookies which are also fat free! And a hold out in my cabinet from Weight Watchers.
http://www.worldpantry.com/cgi-bin/ncommerce3/ExecMacro/missmeringue/home.d2w/report They taste like Lucky Charm marshmallow. YUMMY!

My husband and I are going to try Texas de Brazil for dinner this weekend. Wonderful salad bar and great Brazilian BBQ so as long as I can stay away from the bread I should be good.

Rhi-Education

Like I said I figured I needed to learn some more about these dietary restrictions. How do I communicate to those around me what I can eat if I'm not really sure. And how to I eat in places like resturants and parties when I didn't make the food myself. So I bought Living Gluten Free for Dummies. Of course there is such a book!

How much Gluten does it take to set off a person who has an allergy to it? A teeny crumb - not even a whole crumb. And why does this help me? Because Celiac's disease (inability to process Gluten) is an autoimmune disorder.

I also bought Jenny McCarthy's book Louder than Words not only was it an amazing story but the Gluten Free Dairy Free diet helped her son with his Autism.

In the meantime I've seen a USANA Vitamin presentation on how to live healthier and also reduce inflammation.

Gluten for Punishment

So we headed off to Disney and the first three days I did really well. My family snacked on Ice Cream - I had a pickle. They ate popcorn I had peacans. We had packed snacks to bring in the park with us and I made a special trail mix of nuts and raisins without the peanuts.

Our first night there we went to The Garden Grill Resturant at Epcot to have dinner with Chip and Dale, Pluto and Mickey. Disney has accomodations for people with food allergies so they sent the chef out to talk with me about what I could and couldn't have. They had gluten free rice rolls - and made my plate seperate from the family style meal that was served. The Turkey and fresh veggies were amazing but I couldn't keep myself from trying the cranberry stuffing that the rest of my family was eating. Desert for them was a blueberry muffin with whipped cream and mine was a brownie. I have to say I didn't care for the brownie. I had also ordered a cake to celebrate the birthdays of my husband and my sister-in-law's boyfriend and since I watch a TON of Food Network I was dying to taste a famous Disney cake. And so the spiral began and I paid dearly for it.

Suffice it to say by the end of the week I had thrown my dietary restrictions to the wind and had sampled some of Disney World Resorts finest food: Fried Chicken from the 50's Prime Time Cafe, Prime Rib and Gniocchi Soup from Cinderella's Royal Table (In the Castle - IN THE CASTLE... Come on who isn't going to eat like royalty in the castle. Excuse me chef I'll just have the salad for the $50 I paid to get in here.)And the dessert..... Oh the dessert.

While I did try to keep the snacking to a minmum and opted for fruit pops for the Mickey shaped ice cream by Friday I started to have a sore throat. Did I mention Thursday and Friday it poured? We wore ponchos all day. By Saturday my ears were bothering me and by Sunday night I was coughing. Thankfully my Mother-in-Law had Sudafed but it wasn't helping. Monday morning I opted to sleep in instead of hit the park for our last day and by 8PM I was running a 101 fever. (I bring a thermometer with me everywhere since fevers are a big indication of sarcoid issues.)

Have you ever been on a plane with a fever? Let me tell you its miserable. I ended up calling in sick the next day and saw my doctor. She sent me for a chest X-ray to rule out Pnemonia. (It was normal).

Now lots of people go to Florida and get sick. There are a ton of germy kids and an airplane, and climate changes involved but I apsolutely feel that if I had kept up eating to boost my immune system what ever bug I caught would not have been able to do as much damage.

And since I was wondering about how much of these allergens can mess with your immune system I decided it was time to educate myself.

Progress Report

So I think week 1 went pretty good. For the most part temptation was overlooked and I felt full. I do feel more energized and midweek of week 2 I actually think my head pain has subsided. I don't know if I can attribute that to the diet alone but also the chiropractic adjustments I've been getting. The emotional boost has also been positive so I'm sure that is also at play.

I've lost 17lbs since 1/10/10 and I recently ran into a customer of mine who didn't recognize me. So the results of this have been apparent.

I was able to find something at a chinese restaurant this week that was on my allergen free plan and although I did cheat with some sweet and sour chicken I only ate 1/2 of the meal.

We are off to Disney world next week so I'm a little nervous about how to keep all this going but they have Gluten free menus too!

I've been eating trail mix of raisins and nuts (except peanuts) from Trader Joe's. Drinking Naked Juice with the added antioxidants and lots of salad and fruit.

Learning about Gluten Free Living

Last friday I was treated to a wonderful meal at Wildfire by my friend Jessica since they have a gluten free menu. This was particularly exciting to me as a different drug rep brought giant pans of Portillos Pasta for lunch along with ANOTHER chocolate cake.

So we met and I did have 2 glasses of wine - which technically are on the avoidance list but our Chiropractor says you should pick two things in this kind of restrictive diet you will allow yourself to have.

We had a fabulous baked goat cheese appetizer served with gluten free and no wheat foccacia bread. DELICIOUS.

The only problem was our waiter. I had asked a question and he never got back to me. In fact he deserted us. I ordered a Turkey Burger from the Gluten free menu that came with roasted veggies. It came with cheese on it and he was nowhere to be found to ask about what kind of cheese since that is one of my restrictions.

I'm not proud of how I acted and luckily I have an incredibly supportive and honest friend who pointed out to me that perhaps I had reacted too harshly or strongly but basically I was really angry at the waiter.

The menu said nothing about it being a cheese-turkey burger. And I assumed that a restaurant that had a dietary restriction menu would list specific things on it as what I've read people don't only have one restriction. But that was a wrong assumption on my part and I should have asked. I was frustrated and while that's not an excuse perhaps all of this change and how I've been feeling caught up with me.

The gluten free bun was really good and the turkey burger was awesome as was the flour less chocolate cake that I ate despite the butter in it....

Rhi-energized

I have a lot to update everyone about as I've attempted a Gluten free menu and even Chinese food. I have come to realize that there are people actually reading this blog so I'd love some feed back about what you want to know about.

In the past 5 days I've spoken with some really amazing friends so while it was on my mind I wanted to thank you for your support. Jessica took me out for an amazingly yummy dinner by finding some gluten free places. Karen checked in via e-mail wanting to know how week 1 went and Joe told me this blog was inspirational which blew me away. And my husband didn't complain when I made his favorite meal without bread. (If you've had my pepper stuff you'd understand.) My parents have also been great and Mom is already starting to try and figure out alternates for Holidays for me.

I guess I never put it out there before but when you are trying to make a change like I am its important for me to feel like those around me get it. Right or wrong its my process and I feel blessed to have people in my life who are going to cheer me on in this.

So from the bottom of my heart thank you for reading and sharing in my journey and giving me the courage to be open.