Update... (and Hurray, tomorrow is Christmas Eve!)

Hello friends!
Christmas will be here in two days, and two days after that, it will have been two MONTHS since my last update! Oops! I've often thought about needing to fill you all in on what's being going on, but haven't had the energy or desire to sit and type it out. I sat down today and typed this out - it might be a bit rambling but it's an update :)


So the last time I posted, we were just starting to walk through the treatment process for ITP (immune thrombocytopenia pupura) which we were told was my diagnosis for the sudden drop in my platelets. I started the N-plate ("romiplostim") shots on a weekly basis. Our weeks were full of clinic appointments, lab blood draws, and infusion center appointments for the shots. (If I never have to go to that medical center again, I will be a happy woman! I know it too well!)

My platelet counts seemed to be responding to the shots for the first month, at least. But in recent weeks, despite increasing doses of the N-plate each week (which made me SOOO SICK, by the way) the numbers were not going up, or actually decreasing still. My hematologist recently decided to declare that he isn't sure I have ITP after all. After getting nine shots that are just to treat ITP? That wasn't so encouraging, but Hubs and I began to understand where the doctors are at - things aren't responding to their medications, and they are stumped. Period. I have become a guinea pig and they are shooting in the dark now with their ideas. They wanted me to get a full neck to pelvis CT scan last week, to look for "more significant" lymph nodes to biopsy, because they are now thinknig they may have "missed lymphoma" in September after taking out the node in my neck.

Phew. And that is the short, no-details version of this story that has been playing out for two months. All the while, we have had Thanksgiving and the Christmas season come along, and I've been trying to create some traditions and memories for our family especially our sweet Victory (who is 16 months old today!). It has been a testing time for us. I was SO SO sick from the shots, I have decided I can understand a little bit where chemo patients are at when they are so very sick. I had no desire to eat, I've lost ten or fifteen pounds (which I didn't really need to lose... Baggy skinny jeans aren't a good look!). I was more exhausted than ever before. I had terrible joint and muscle pain and aches. It was a messy time, and made worse because it took about a month to convince my doctor that the symptoms were definitely from the N-plate, because of a pattern we noticed, and I needed some medicine for nausea and the like.

Thankfully, the week they were finally listening to me, I started to feel better. But Hubs has missed so much work, we have gotten closer than ever before to not being able to pay our mortgage. We have been gifted groceries and gift cards from friends and family for food and gas. Our church family continues to be the most amazing body of people we've ever known. I am so proud to belong to a church that looks like the Church God desires and created to exist on this earth. Surrounded by our faith family, we have never felt alone or without hope. The best people on earth - I'm convinced!

Last week I had a short overnight from the ER to the medical floor of the hospital. My clinic called me right after we left the blood draws and said my platelets were down to 3,000, and I had to go to the ER because they were concerned about bleeding. When they took my labs at the hospital, their lab came back with a level of 13,000, and after a platelet transfusion (my first ever) that night they went down to 10,000. That's when the doctors really got confused, Lol!
I talked them into letting me go home the next evening, because watching for bleeding there and being bored, away from my daughter, and paying too much money, versus sitting at home where I want to be, watching for bleeding - it's a no brainer.

Since I have been home, God has sustained me every day. No serious bleeding, no ER. I have been learning so much about what it means to ask God for enough strength and sustenance for the day, and leaving it at that. It is much like Him providing manna for the people in desert. Just enough for the day, no more, no less. Wow, what a blessing that growth has been to my faith and my daily life, already.

Last week was a wonderful change of pace for us. I went to see a new doctor, a practitioner of alternative medicine, who is also a follower of Jesus. Wow, what a refreshing time it was, where we were empowered, encouraged, and given real, true information about what is standing between me and health. I am so thankful for the new path I have started from that appointment. I cancelled the CT scan which was going to be Wednesday. I cancelled my blood draw, and I cancelled my hem appointment. We all needed a break in our little family, and it was a good decision.
The main reason for cancelling the CT was radiation. Did you know one CT is worth 500 X-rays of radiation? Yuck!!! I cancelled the blood draw because my veins need a break. I had two IVs blow in the ER last week, my arms are a mess. And I saw no need for the appointment without labs to discuss. I think I will get my number checked next week, but I have so enjoyed the break from the hamster wheel of testing and results and bad reports and possible diagnoses. It can be really negative and sometimes you just need to get out of it!

I am just so grateful to be out of the hospital, to be with my family, to be able to go to church today and have gone out yesterday and made a Christmas time memory with my sweet Hubs and daughter. I'm going forward each day approaching it one day at a time, asking God to sustain and strengthen me enough to be able to do what He has for me at that time.

I believe healing is still ahead for me. Every day it has not happened yet, I am one day closer to the day it does happen. God is willing and able to heal today just like Jesus did in the New Testament -He's the same yesterday, today, and forever! I am looking forward to being healthy and strong again one day, yet in the meantime, I will not let this testing make me a bitter or negative person. I will become a better person from every challenge I walk through; that is a commitment I will never regret! And to choose joy in every moment that isn't so joyful on the surface - that is my gift to myself, my family, my friends........ Our greatest power is our power to choose. Thank You God that I get to choose my response to every situation in life!

So stay tuned in 2013... greater things are ahead for every one of us that pursues them!

Reindeer Corn Chex Mix

I adapted this recipe from one of the Chex.com recipes that was written for an autumn theme. I made it in about ten minutes and it's currently cooling and setting up - it looks SO good, I wish I could indulge in it, but the ingredients of white chocolate chips are NOT GFCF (I avoid the pretzels as well)! That just means more to give away!I can't wait to package it all in little Christmas tins (which I purchased for $1 each!) and deliver to the neighbors :)

Emily's Reindeer Chex Mix


Ingredients
16 oz white chocolate chips
4 cups Rice Chex cereal
4 cups Corn Chex cereal
4 cups pretzels
2 cups Reindeer Corn
1/2 cup+ Cinnamon Imperials/"Red Hots"

Red Hots and Reindeer Corn

Pour the white chocolate chips in a large microwaveable bowl. Melt by heating in the microwave for two minutes, stirring every 30 seconds. Add in the cereal and pretzels, and stir gently until coated with chocolate. Then add in candies. Spread mix onto waxed paper on a cool countertop to set. Break apart into small pieces and package as you like.

Delicious! (I snuck a bite...or two.)

Looks good!

Packaging for the neighbors

This says Merry Christmas like no other treat!

Intentional Christmas

Last night Hubs and I were talking, and one of us said, "You know what the hardest part of being an adult is? It's the fact that birthdays, holidays, and most of all CHRISTMAS are truly what you make of them." We both agreed that being a married adult can be sobering when you realize that you are responsible for creating the culture you want to have for celebrating holidays and other special events. You have to make things special and memorable. You're in charge of memories that go beyond the sparkle, glitter and lights. It can be a lot of pressure if you let it get to you. But thankfully, this year we have been liberated by realizing that we have done too much in the past, too much to make other people happy and not enough to make ourselves happy and able to enjoy and celebrate Christmas in a way that brings us meaning.

So this year, we are starting a new tradition. We are doing what we'd like to do to celebrate the holy-day of Christmas. I am so excited to be spending this evening with our dear friends and church family, first at a candlelight service and then at an annual party that we are attending for the first time. Can I just say - It's amazing what you'll find time for when you schedule it like a priority - rather than trying to prioritize a too-full schedule. (OK that wasn't a riddle, but it kind of wrote out like one... ha!)

I am thankful for the freedom and light heart I feel today. I am not out running around last minute for gifts; I am not sitting here stressing about tomorrow's crazy schedule driving from city to city; I am not worried about making all variety of dishes to bring to each gathering. I am relaxed. I'm spending some time in the kitchen making Christmas Chex Mix for neighbors, and hoping to bake some gluten-free, dairy-free Russian Tea Cookies this afternoon. (Russian Tea Cookies are one of my favorite Christmas cookies of all time, and I haven't had them in years - I'm hoping they turn out with alternative ingredients!)


Can I encourage you, my friends? Be of good cheer this Christmas weekend. Keep the main thing the main thing. Remember the reason for the season. In Luke 10, Martha has invited Jesus into her home and has created a busy whirlwind of chores and tasks for herself, while her sister Mary has stayed in the living room with Jesus to sit at his feet and soak up his wisdom and love - the Word says she was hanging on every word he said. In response to her sister's actions, sadly, Martha chooses to whine to Jesus: "Master, don't you care that my sister has abandoned the kitchen to me?"
Listen to Jesus' response to Martha. Take it to heart and let it guide you toward peace and the right priority today and tomorrow:

"Martha, dear Martha, you're fussing far too much and getting yourself worked up over nothing. One thing only is essential, and Mary has chosen it - it's the main course, and won't be taken from her."

So my friends, don't get caught up in last minute errands, to-do lists, and people-pleasing this weekend. Put Jesus first, and the rest will be taken care of or fade away as you realize its unimportance in the big picture.

Merry Christmas!

GFCF Egg-Free Soy-Free Sugar Cookies

Yesterday afternoon I had the best time baking sugar cookies with my friend Holly! I've possibly consumed too many cookies in the last twenty-four hours, but you only live once! I'm doing much better on my diet restrictions than I did last year during {Thanksgiving and Christmas}. We made these sugar cookies without gluten, dairy, eggs, or soy, and they taste great! Then we frosted and decorated them just like we did growing up with moms that were into baking. All I have to say about this is: I love baking new allergy-friendly recipes that turn out!

A little sample of the cookies

Here is the recipe:

Old-Fashioned Sugar Cookies (Revised)

Author unknown

1 cup rice flour

3/4 cup tapioca flour

3/4 cup cornstarch

2 1/2 teaspoons xanthan gum

1 teaspoon salt

1 cup sugar

1 cup shortening

1 egg or 1/4 cup liquid egg substitute (*I used Ener-G Egg Replacer)

2 teaspoons vanilla

1/4 cup (or more) potato starch flour for kneading

Colored sugars, sprinkles, or frosting for decorating (optional)

Preheat oven to 350 degrees.

In a small bowl, whisk together the flours, cornstarch, xanthan gum, and salt. Set aside.

In a mixing bowl, cream the sugar and shortening. Beat in the egg and vanilla. Add the dry ingredients, mixing enough to combine. The dough should form a soft ball. (*At this point, the dough was very crumbly and dry. If you run into this problem, add rice milk in small amounts until moist and workable.) With your hands, knead in enough of the potato starch flour to make the dough easy to handle and roll out.

Working with half at a time, place a piece of plastic wrap over the ball and roll out to about 1/8 inch thickness. Cut into desired shapes and place on cookie sheet lined with parchment paper. (Without it, the cookies stuck to the sheet.) Decorate with colored sugars before baking, or use frosting to decorate after baking if desired. (With this dough you can use all the scraps. Just scrape them together and roll out again. They will not get tough.)

Bake for about 13 minutes, but check for done-ness at 10 minutes. Cool very slightly before removing from cookie sheet. Makes 3 dozen 2 1/2-inch cookies.

More pretty cookies

Here is the glaze recipe:

Basic Icing

1 cup powdered sugar

1/2 tsp vanilla extract (or peppermint, orange, almond, etc.)

Rice milk, fruit juice or liquer (enough to make it desired consistency)

*For chocolate frosting, add 2 Tbs unsweetened cocoa powder

Whisk together sugar (and cocoa if using), extract and milk by gradually adding liquid until the frosting is consistency you need for your cookies. My two bowls (one of white vanilla, and one of pink almond) came out more like a glaze or icing than a frosting. It was very pretty, had a great tackiness for embellishing, and sweet.

Photo credits all to my husband. I especially love this one!

Angels, stars, snowmen... white pearls, sugar crystals... red snowflake plate... I'm in a Christmas mood!

GF Russian Tea Cakes

Ok, one more post before bed - something evoking happy memories and hopeful taste buds! I have always enjoyed Russian Tea Cakes at Christmas parties and Christmas cookie exchanges. They are sweet with a delightful crispy bite giving way to a soft, nutty chewiness. And if you're not careful you'll be walking around with white lips :)
It needs a few substitutions to make it dairy-free and egg-free, but this recipe from Betty Crocker (of all places! GF goes VERY commercial...) looks like a simple allergy- and party-friendly Christmas cookie! Follow the link for nutrition facts, to leave a review and more.

1	cup butter, softened
1/2	cup powdered sugar
1	teaspoon vanilla
1	egg
2 1/4	cups Bisquick® Gluten Free mix
3/4	cup finely chopped nuts
2/3	cup powdered sugar

    1. Heat oven to 400°F. In large bowl, mix butter, 1/2 cup powdered sugar, the vanilla and egg. Stir in Bisquick mix and nuts until dough holds together. 
    2. Shape dough into 1-inch balls. On ungreased cookie sheets, place balls about 1 inch apart. 
    3. Bake 9 to 11 minutes or until set but not brown. Immediately remove from cookie sheets to cooling racks. Cool slightly. 
    4. Roll warm cookies in powdered sugar; place on cooling racks to cool completely. Roll in powdered sugar again.