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.