A Whole New World: So Why Foster Care?

IMG_5140In May JJ and I officially started our foster care journey.

Yet, the process began long before all the paperwork, informational meetings, and training. As cliché/corny/dramatic as it sounds, God started preparing our hearts years before we ever said the words “foster care” out loud.

JJ and I both have always loved working with kids. Actually, we literally met thanks to kids. The first time I ever saw JJ was at an orientation for new Sunday School volunteers.  Side note: Every time I tell this part of our story, I immediately think of that episode of The Office, where Michael Scott decides it’s a brilliant idea to make the user name for his online dating profile, “Little Kid Lover,” so that potential matches know he wants to have kids.

Even before we got married we talked about how many kids we wanted and what we thought our lives would look like in the future. JJ started at wanting four kids, but then one day in the car when I said four names all in a row, he quickly said two kids might be a better idea…

Growing up if you asked me how many kids I wanted it would have ranged from three to eight. I wanted as many babies as possible without going completely broke. However, in college I started having some health issues appear. That was the first time I ever thought about pregnancy and the problems that could arise for me. Since I wasn’t really dating anyone (meaning I was as single as Fraulein Maria at the beginning of The Sound of Music aka nun status), I didn’t give it much thought. After I met JJ my health problems started to take a nose dive that would continue to decline until I crashed and was diagnosed with EoE in April 2017. (If you are a new reader, I have a good amount of blog entries on this journey, so please feel free to explore this blog if you don’t know what EoE is. Before I was diagnosed, I had no idea either what it was.)

As we waited for answers about my health issues, we also kept “randomly” hearing about foster care. As I sank into depression due to my condition and gave little thought to my future beyond the complete certainty that it would be awful even if I had one, God was laying seeds for something beautiful.

After I got diagnosed and was on the path of healing, God kicked up His divine appointments by a hundredfold. We began “randomly” meeting people pursuing foster care, kids that were currently in foster care, seeing foster care played out on This is Us, hearing about foster care on NPR, seeing it show up as we scrolled through social media. It was literally like God was saying, “Don’t miss this! I’m not going to let you miss this.”

So why are JJ and I pursuing foster care?

Because we don’t want to miss out on what God has planned. Sometimes God is silent, but sometimes He shouts and basically shoots off a flare gun in the direction you should go.

As simple as it sounds we just want to love on these kids, and be their biggest advocates and supporters. I see my friend’s kids and my cousins’ kids, and they are all just so precious and so adored. At the end of the day foster kids may have a special label, but they are just kids. They are not their trauma. They are not their issues. They are kids that just want to be loved and seen, just as the other kids in our lives.

When we first started considering foster care, JJ and I both wrestled with fear. Not having any biological children, we have no clue how to parent. As we thought and prayed about it though, we began to realize no one knows how to parent until they actually become a parent. In training we learned that even experienced parents have to learn a whole new way of parenting because foster kids will differ from their biological children.

In our own lives JJ and I have seen God show up. We have seen others be the hands and feet of Jesus to us, and we want to be that for these children and their parents. Most of the birth parents we will meet most likely grew up in the system and were once foster children themselves. It’s a cycle that is very hard to break, especially when you are trying to do it without love and support. Also, not all foster homes are equal, and we heard of some terrible ones during training that would break your heart and fill you with a holy rage.

Going through foster care training has reaffirmed how much we need Christ and how much we need other people to help us take a stand for these kids. We can’t do this on our own. We are going to need a constant covering of prayer. Just as we were stretched and pulled as we entered marriage, moved across the country, and walked through illness, this will be a season where once again God will ask us how much we trust Him. Already you all have been so supportive with your messages of encouragement. Thank you so much. It takes a community to bring up kids, and we are grateful for each and every one of you.

We have one more home study in a couple of weeks. We will be working with kids ages newborn to ten to start with on our foster care journey with a specific focus on working with sibling groups with up to three children. We just learned that in the coming weeks we might be working with a current foster family with three kids: a 4-year-old boy, a 2-year-old girl, and a newborn.

Prayer Requests

  • Pray that God continues to fill us with His peace and His confidence, and that we rely on Him as we welcome these children into our hearts and homes. Pray in advance for our hearts on the day these kids will leave us and return home. Even though “we know what we signed-up for,” it’s going to be so difficult, especially in cases where the home they are going back to is still unsafe and dangerous.
  • Pray for these three siblings. Right now, one home has the two girls and another home has the little boy. These kids have just gone through something unbelievably traumatic, and on top of being taken from their parents and the only home they have known, they have the additional trauma of being separated from each other. Cover these little ones in prayer.
  • Please pray for their current foster families as they love on these children and their birth parents.
  • Pray for the birth parents and over their situation. Like I said before, many of these birth parents were in foster care themselves. The bias is to think that all of them are terrible people that don’t love their kids, but they might be doing the best that they know how to do or are able to do.

Major Needs

  • Since JJ and I are starting from scratch, we have barely any of the necessities required to take care of this age group. Newborn to 10-years-old is pretty wide. We are relying on a bit of a miracle. We are slowly accruing items as our budget allows, and my parents have graciously bought us one of our needed cribs, a crib mattress, and crib mattress pad, which we needed before our final home study. Thanks Mom and Dad! I’ve created wish lists on Amazon.com and will include links below. If you all could help us with any of these items and share this blog post with friends and family, it would mean so much to JJ and me. We literally want to tell these kids that they are loved by so many people across state lines and across the world, and that a community of people saw to their needs and wants as they play with toys, drink from bottles and sippy cups, and lay their heads down to sleep at night.
  • http://a.co/hSitX1Y– Foster Care Must-Have Items
  • http://a.co/aQuk7NL– Foster Care Books and Toys

Enough

Lately, I have been enjoying my life again.

I wake up actually wanting to live. Fear and anxiety, two of the most annoying and horrible wake-up callers, no longer greet me every single morning. Sometimes I can’t remember the way I used to feel. As I walk around the park by myself, the desire to check my pulse and rub my neck isn’t as prevalent. My body is slowly healing and my mind is playing catch-up.

So much of my EoE symptoms played out inside my brain before they ever effected my throat and esophagus. For the past 5 years I have lived in a body that was constantly sounding the alarm, screaming, “Hey! There is an emergency! I’m not Dwight Schrute trying to scare you or teach you the perils of life through a crazy drill!  This is for real! Mayday!”

To say it has been nice to enjoy the quiet of my own self would be an understatement.

Yet…

It might be coming to an end.

My diet has been really hard the past year. As you know, if you have been an avid reader of this blog, it has been more like “monitored anorexia” than a restricted diet. In January I made an appointment with my gastroenterologist. I cried, cursed, and complained about my life. I told him I just couldn’t live like this anymore. Some kind of solution had to be out there to help me be Sarah again.

Since Christmas I have been on a very restricted version of the AIP diet. This diet already is super severe, so long-term this won’t supply all the nutrients my body needs. Actually, I had to break it and add in gluten-free oats again after two months of being without my two gluten-free grains (oats and rice). I was having crazy bad migraines, and I think it was a combination of intense hunger and some crucial vitamins and minerals.

My gastroenterologist told me in that January appointment that I needed to try the Budesonide Slurry. He said I had tried harder than most patients to make the diet work, and that it wasn’t for a lack of trying that I wasn’t seeing results. He knew I needed to hear that.

Budesonide is a liquid steroid that you mix with a thickener like maple syrup, honey, cornstarch, or Splenda. You drink this concoction every morning and wait an hour to eat. It is supposed to coat your esophagus and get rid of the build-up of white blood cells aka eosinophils.

I’m scared because this is my last resort (other than living on a very restricted diet long-term and maybe eventually down the line needing a feeding tube).

It has been a sort of vacation lately not having “Fear” walking around my mind like he owned the place. Now I feel like he is making arrangements to stay indefinitely.

Scenarios I am trying to prepare myself for:

1)    It works! I can whatever I want again and I have little to no side effects.

2)    It works…but I still can’t eat whatever I want.

3)    It works…but the side effects are severe and horrific.

4)    It doesn’t work and I need to go back to the drawing board.

Recently, I read an incredible book by Kate Bowler, Everything Happens For A Reason: And Other Lies I’ve Loved. In it she says, “I plead with a God of Maybe…It is a God I love, and a God that breaks my heart.” That perfectly describes the emotional tennis match going on in my mind.

Will God use the medicine to heal me? Will I ever feel whole again?

If the results are good, I wish I could know now. If they are bad, I pray that I don’t fall into a pit again.

It’s so hard to pray at moments like these. I know there are worse things in the world, but this is the worst thing that has ever happened in my world. This disease is the most difficult battle I have ever faced because it’s not just one battle. It set off a war within me and threated to destroy everything I love. What’s deeply disheartening is it doesn’t only affect me. Yes, I bear the brunt of it, but those that are close to me also carry the weight of this burden.

If you find yourself in the valley between death and life, even though it is dark and we feel alone, just know you have a fellow sojourner making the climb; praying and hoping she will reach the top of the mountain in the land of the living. Whether it is due to divorce, the loss of a loved one, infertility, chronic illness, cancer, etc. I’m sorry you also find yourself in this place. I may not know what you look like or what your struggle is, but I’m praying for you as I type these words. I pray that Jesus, the Ultimate Counselor and Great Physician, comforts you with His presence and fills you with His peace that surpasses all understanding.

I don’t know if everything will be okay. I don’t know if the medicine will help or not. All I know is God will meet me on the other side of the outcome and won’t leave my side.

That’s enough.

That has to be enough.

 

Just Do It!

2018 is my Nike year. “Just do it!”

Today, I should be finishing up the book of Judges, Ruth, and starting the first chapter of 1 Samuel. Since the objective is to be finished reading the entire Bible by Easter, after that I plan on returning and doing a deeper study of certain passages and books that God lays on my heart. Still remembering to post photos and try to be more in the present through this practice. I have been reading a chapter or two a night of Sheila Walsh’s new book, In the Middle of the Mess: Strength For This Beautiful, Broken Life. I love Sheila and the way she allows God to use her voice. She is transparent, honest, and real. Most Christians hide their weaknesses and only play up their strengths, but she is someone that truly shows how God can do more with a broken, willing vessel than the perfect version of ourselves we idolize.  When she says something, I sit up and take notice because she is someone acquainted with pain and suffering, but doesn’t let that be the end of her story.

In the Middle of the Mess

Sheila Walsh’s latest book. It’s currently only a $1.99 for the Kindle version on Amazon.com!!! So worth it!

I know it is just over two weeks, but I’m really proud of myself for pushing through on a daily basis and not giving up on these goals. With my family and friends, it’s so easy to encourage and motivate them. I honestly believe they can do whatever they set their mind to because they are amazing and I love them. However, as much as I can be their biggest fan, I’m my own worst enemy. Finding reasons why I can’t do something or why I shouldn’t do something should be more difficult than it is, but it’s not.

In a half-empty glass sits all my talents, abilities, and potential. More than anything I see what I’m lacking or missing. If only my singing voice was just a little bit better and my EoE didn’t cause problems with my vocal cords, then I would try out for the worship team at church. If only my health was a little stronger, than I could do more things like travel and experience the world. If only I knew I was going to succeed with absolute certainty, that in no way would I come across foolish or dumb, then I would sit down and write a book. If only I was easier to love, then I would have an abundance of people desiring to be in my life. I could literally write a book titled If Only, and every person that read it would need to go to therapy, especially if they made it to the end.

Not this year. Not in 2018.

This year I am focusing on what God has already accomplished within me. I’m training my mind not to romanticize the past, nor to look to the future as the answer to all my present dilemmas. The “if only’s” are still there, but each day as I read scripture God adds His name to the equation. “If only…then, God.”

Most of the dreams I have fantasized for my life are too small for what God wants to do, so I need to dream bigger dreams. Then, I need to take those dreams, and with God’s help transfer them from my imagination to reality.

Seeing God move in our lives requires courage, bravery, and complete trust. It’s so much easier to maintain the status quo and live in a comfortable bubble. The greatest gift that came from EoE was also the greatest curse: my life is gone. The person I was is gone. As scary as that was to go through and continue to go through, it’s also so freeing because I have been through the worst year of my life and with Jesus I have made it. I have endured what I thought would leave me destroyed and unrecoverable. There were days I prayed for death because of the physical and mental pain, other days where I felt utterly alone and unloved, but in it all He delivered me.

2017 was my year of grieving the life that will never be.

2018 is my year of saying, “God, make my life what you want it to be.”

Or as T-Swift would say, “I’m sorry, the old Sarah can’t come to the phone right now. Why? Oh, ‘cause she’s dead!”

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New Year, New Goals, Same Jesus

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See you later Christmas! Hello 2018!

First blog entry of the new year!!! Woohoo!

Welcome 2018!!!

Today is January 12, and I haven’t broken any of my New Year’s Resolutions! This year I wanted to concentrate on doing four things and eliminating one thing from my life. Here they are:

📝Read through the Bible in 90 Days
📝Take a photo a day – Look for wonder
📝Read all the books I got for Christmas this year and last year 😬
📝Memorize at least one verse a month.
📝I want to leave behind fear, anxiety, and doubt in 2017. Let go of perfection. It doesn’t exist outside of Christ.

Why did I make these my goals/resolutions?

I’m 30 years old, and have loved Jesus since the zero was in front of the three and not behind it, and have never read through the entire Bible. I say that with a bit of shame and guilt because that is totally my fault. I have started most of my adult years attempting (aka half trying), and would give up almost every year when I hit Leviticus. The 90 day plan seemed like a great idea because I wouldn’t get stuck in one book for too long, so I could keep momentum. Then after reading The Bible in its entirety, I can return to certain places for a deeper study. Guess what?! I made it past Leviticus. I’m now in Deuteronomy! I like to use both my Bible (the one with physical pages you flip) and the YouVersion Bible app to listen as I read. It helps to keep me focused. However, being totally honest, during Levitus and Numbers, I would usually just play it. Reading along with it got to be a little much and I didn’t want to get stuck yet again.

Last year I was really focused on what was missing from my life or what I was missing out on, especially as a result of my illness. The word that came to me for 2018 was “plenty.” In scripture after a famine, God would usually promise His people a time of abundance or plenty. I’m praying 2018 is my “year of plenty.” Both in physical and mental healing, but also me appreciating what God has already blessed me with on an individual level and as a follower of Christ. Taking a photo a day reminds me to appreciate the moment; to step back and look at something in a whole new light. I almost forgot one day, but remembered five minutes before midnight. Still a win! Also, my Instagram username is mrsjjmiller if you want to see more of what I’ve posted so far this year!

In 2017 I only read five books, so basically it was a non-reading year. However, just because it wasn’t a reading year, didn’t stop me from buying books or requesting books for my birthday and Christmas. This goal might seem super easy, it’s not. It is probably the most amount of books I have ever had to read in a year (blessedly, I love children’s literature, so some will be fast reads haha). Currently, I’m reading In the Middle of the Mess: Strength for This Beautiful, Broken Life by Sheila Walsh and Goliath Must Fall: Winning the Battles Against Your Giants by Louie Giglio.

Ever since participating in the Beth Moore challenge, I know how important it is to make scripture memory part of my year. When I did her memory challenge, it was two verses a month. I would usually fall behind, so this year I am focusing on one verse a month. I am trying to say it to myself at least 3 times a day. It’s become like a mantra. My first verse is Joel 2:25 (NLT version). I really love ESV for studying God’s Word, but I really love the way the NLT translation words things. It feels like it is written how I would say it.

Leaving behind fear, anxiety, and doubt as well as it’s first cousin, perfection, is really a daily challenge for me. The only way I will leave those behind is by replacing them with joy, hope, and faith. The only way I can add those three things to my life is by changing my vision from me to Jesus. Reading my Bible everyday and memorizing my monthly memory verse has helped a lot, but I didn’t adapt to my negative way of thinking overnight, so it won’t disappear or change to something life-giving after one day.

Also, a big part of that is learning to let go of control. God has to become bigger and I have to recognize that I’m not invincible, that He is smarter and wiser than me, that He knows way more than this know-it-all every could.

What resolutions did you set for 2018? Do you like having a word to focus on throughout the year? How do you motivate yourself to keep pressing forward with them as New Year’s Day fades in the rearview mirror?

Zuzu’s Petals

The Buzzfeed Quiz section was invented for people like me. “If You Were a Dessert, Which One Would You Be?” “Which TV Show Is Your Life?” “Take This Quiz And We Will Tell You How Old You Are.” (Side Note: If the answer to that last question is “20-30,” I’m not impressed. It’s basically cheating.) I have taken the Myers-Briggs Personality Test at least half-a-dozen times. Only to get the same answer every time (INFJ for any curious folks).

In high school I made a hobby out of taking career aptitude tests. The answers always made me laugh. Me, an aerobics instructors?! BHAHAHAHAHA! If you personally don’t know me, you are missing out on one of the biggest laughs of your life. When friends took me to an exercise class, at one point I hid behind an exercise ball to get out of doing more sit-ups. I signed up for a gym membership with an array of Oreo crumbs all over my mouth and chin (When do I notice it? When I’m getting in my car, and driving away). The only way I would make an incredible aerobics instructor is if the class was a cover for couch potatoes to get concerned family and friends off their case. The whole session would be us spraying ourselves with water bottles and Instagramming our “amazing” workout.

So when my cousin Grace posted a psych quiz I had never heard of, it was Christmas morning for me! For all the other quiz addicts out there, it’s a free app called EnneaApp. If you post your results to Facebook, you get free access to read your profile. My Enneagram number is a tie between a 4 (The Individualist, The Romantic) and 6 (The Loyalist, The Doubter).

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When I read that Anne Shirley of Anne of Green Gables would be a type 4, I was like “Yep, then this is definitely me.” One of my favorite Anne quotes perfectly sums up our personality: “I can’t help flying up on the wings of anticipation. It’s as glorious as soaring through a sunset… almost pays for the thud.” Basically type 4’s are the kind of people you want to be around on a good day because a good day for us is FANTASTIC! But a bad day…EVERYTHING is a CATASTROPHE. It doesn’t help that another part of my personality is skeptical and suspicious; always waiting for the bottom to drop.

So why am I sharing all this information about myself with you? To give you some perspective as I reveal the last two weeks.

Nothing in me wanted to do this corn trial. Even though my doctor has never met someone with corn as their main trigger, I know all too well how wrong people can be even if they have the letters “M.D.” attached to their name.

I started off with bacon that has a possible corn derivative in it. The source of this ingredient is usually corn, beets, or cane sugar. The first time I ate it I had a major panic attack, which was to be expected. I ate it a few times and decided to also introduce raisins (if you have been following my blog the entire time, you know that grapes are a possible trigger for me based on my LEAP MRT results). For the most part, I felt okay. I started noticing a small change in my swallowing. The best way to describe it is it somehow got slower. I noticed it more than I usually did. However, my anxiety could be playing games with me, so I kept going.

Last weekend I decided to add caffeine (black tea) and organic corn in the same day. DO NOT ADD TWO POSSIBLE TRIGGERS IN ONE DAY! I repeat: DON’T DO IT! I had a massive panic attack and then a few hours later, my throat was throbbing like crazy. It throbbed for the rest of the week. At one point I drove to the hospital, and just sat in the parking lot, to try to calm myself down and recognize that it wasn’t anaphylaxis, but a really bad EoE episode. This past weekend I decided to try again with black tea. It didn’t hurt going down, but it felt super odd. Then, later it started to throb. The next day at church my throat hurt so much and my ears felt super full like they needed to pop. During worship I tried to sing and my voice cracked over and over again. Then the throbbing returned, and I had to leave the service early due to the pain. When I’m having an episode, even the vibrations from the drums, hurts my throat.

Later that night I learned that tea bags are made of cornstarch, which may explain why I’m having such a strong reaction. I’m going to try again with loose leaf tea to see if that makes a difference.

Okay…those are the facts. Here come the rampaging emotions. Every suicidal, depressing, hopeless thought raged into my mind like an out-of-control bull. The crying spells that I said good-bye to in June, all entered the room like they had never left. After such a successful trial with eggs, I really went into corn hoping for the best; desperately wanting to be proven wrong that I ever considered corn a trigger.

Once again I was forced to grieve a life that can never be, at least not in my present reality. Eating out is off limits on a permanent basis. Going to the dentist is even more of a nightmare. Getting medicine without cornstarch, dextrose, sorbitol, etc. is unheard of without getting it specially made by a pharmacist. EoE is a cruel disease. You aren’t only in physical pain constantly when exposed to a bad food. You miss out on experiencing life to the fullest because almost everything in our culture centers around eating. It separates you from loved ones because they have no idea how to treat you.

I’m tired of living this way. It is exhausting to think about all your meals, especially when it’s the same exact meal every single day with no end in sight to this pattern.

This whole week as the Feast to Gluttony…I mean Thanksgiving approaches (sorry, sarcasm is one of my coping strategies) , I have been working on having a spirit of gratefulness. It is so hard right now to look at my life and be thankful. Clarence from It’s A Wonderful Life needs to pay me a visit, and remind me what I still have to live for as I fight the disease form of Mr. Potter. I want to be as excited about the little things as George is about finding Zuzu’s petals once again in his pocket. Yes, I really do have a lot to be thankful for and the girl buried beneath the depression knows it. She is fighting her way to the surface. However, today depression wins.

I’m going to let myself have this bad day. Life with any chronic illness is a day by day process. Some days are good, some days are bad. By the grace of God, I have had many of good days during the past few months. The sun will come out again tomorrow. Even if tomorrow is several tomorrows away.

Eggcellent News!!!

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Autumn has officially arrived to Atlanta!

Okay I know it has been a while since I last posted. The month of September and October have been a bit of a whirlwind!

When I saw my new gastroenterologist, Dr. Max Shapiro, in August we discussed reintroducing my body to “corn and its by-products” over the course of the next 6 weeks. He personally hasn’t seen corn as an EoE trigger in any of his patients. Side note: Whenever doctors tell me this, I immediately have a suspicion that they are due for a weirdo patient and guess what it’s gonna be me (if you know me, you know I sang this last phrase in Justin Timberlake’s voice). With so much happening during the month of September, I didn’t want to risk potentially flooding my biggest culprit into my body once again.

I decided on eggs and I loved it! Eggs are so good for you and with my limited calories I wanted to bring something in that is packed with nutrition. I know some people don’t like eggs, but I’m a serious breakfast lover. It’s one of the reasons why I firmly believe if Leslie Knope and Ron Swanson were real people we could be friends on that common link alone without factoring anything else into our friendship chemistry.

If you have EoE or are currently on an elimination diet to determine if you have any food intolerances, just know when you reintroduce a food, be prepared for anxiety. Even if it is a food that you believe is reasonably safe for you, you will still have fear. I tell you this so you are prepared and not caught off guard. The first time I ate eggs, I decided to go slow and have scrambled eggs made with only egg whites. I read research that suggests that many people can tolerate the whites, but the yolks might provoke issues. I scarfed them down and waited to see if my throat tightened or experienced any uncomfortable symptoms.

Inhaling your food is never a good idea, but when you are anxious you have a habit of doing this without knowing it. You just want to get it over with, so you end up inadvertently swallowing a good amount of air and holding your breath at times. This meant I had a lot of belching after the first trial, but I recognized that this would probably happen for a time because of my anxiety levels.

I decided to try eggs again and that experience was a lot better, and I didn’t have any unpleasant side effects. I started adding yolks to the concoction, and still felt really good. None of the symptoms that I had with potatoes appeared. If you aren’t familiar with my blog entry on potatoes, when I tried to reintroduce them 2 separate times, after one week of eating them constantly I started to have constant throat tightening, began to have trouble eating other foods that a week before I had no problems consuming, and had a full blown EoE episode where I felt like I couldn’t swallow. Once I cut the potatoes out all the symptoms went away, which led me to determine that sadly potatoes and I may never ever get back together.

After eating the same ten ingredients for the past few months, having eggs again sent me over the moon. I even found a cool recipe for pancakes on Pinterest! Okay, well not real pancakes, but still delicious all the same. You take one medium size ripe banana and mash it. Next, you add 2 eggs and mix it all together. Then you cook them like you would pancakes. You pour some of the mixture into a coated pan. I couldn’t use cooking sprays, so I used a little organic olive oil to coat the pan and it did the trick. You cook it over a low heat and flip it after about 2 minutes. After not eating anything close to this for the last few months, this tasted like a real treat. This tastes amazing on its own, but you can also add some cinnamon for some more flavor.  I also added sugar during this trial, and sometimes I would add a little bit of sugar to the mix, especially when the banana wasn’t yet ripe. My husband spoils me with his amazing cooking, and he even started to make me a homemade strawberry glaze (organic strawberries and cane sugar) to put on top. So so good!

For this trial I ate eggs roughly every day sometimes multiple times a day. I would sometimes add them to my burgers, scramble them for breakfast, or most often I would make banana pancakes for dessert. I have a big sweet tooth, so this elimination diet has been really hard because without sugar nothing quenched the craving. Also, all you people that are like “fruit is such an amazing dessert” are all lying to yourselves.

For those of you wondering if I ever had trouble in the past eating eggs, yes I did. Eggs used to be difficult to eat when I was in the thick of my EoE, but during this trial I didn’t need any water or liquid nearby to help me swallow. Sometimes the foods that are the hardest to eat when your eosinophil levels are high aren’t actually the problem children. For example, I already mentioned potatoes. That reaction took a week of eating it before my body gave me major reactions and fully rejected it. Though it is smart to keep a food journal and watch your symptoms like I did, you still need to have an endoscopy performed no matter how you might feel.

Last Tuesday I went in to have one performed. Even though this is my third one, I still get so nervous before the procedure. After the procedure, I don’t experience a lot of pain. I’m groggy and really tired for a little while, but then I feel like me again. It doesn’t hurt to swallow after the endoscopy, unless I’m eating. Even then I feel it less in my throat and more in between my shoulders for some reason.

Today I received my final confirmation that I still have zero eosinophils after reintroducing eggs and sugar! This means I am one step closer to finding out what my culprit is or if I have more than one problem food. Currently, I decided to bring back almost all my yellow foods from the LEAP MRT. I want to see if the test was accurate for me at all because I didn’t test positive for potatoes, but I’ve ending up having to completely eliminate potatoes. The two big ones in this category are corn and caffeine.

Corn is in everything. It goes by different names, but basically if it is processed there is 85% -90% chance it has some kind of corn derivative in it. I’m super excited to be able to brush my teeth with regular toothpaste. Also, I really want a cup of tea, but I might switch to coffee. I love having milk in my tea, and I’ve read a bunch of blog entries on the taste of alternative milks in black tea. All of them said nothing is quite like milk, and that most overpower the tea.

Basically, my body is rejecting being Irish. No potatoes and no tea. Couldn’t it have rejected it by turning my pasty white skin into a golden tan?! Nope!

I’ve never been a coffee aficionado. The only coffee drinks I have ever drank are the ones from Starbucks that are basically sugar and corn syrup with a splash of coffee for color. So any recommendations for a coffee newbie would definitely be appreciated. I’m just so happy to be able to try a hot beverage again, especially with winter right around the corner.

I will let you know how this trial continues to go. I did add some bacon that is made with a corn derivative, but my body didn’t seem like a fan. Oh well, if at first we don’t succeed, try again. I’m continuing to take it one day at a time and trying to teach myself to hope for the best.

 

 

We’ve Only Just Begun

“We’ve only just begun…”

What simply used to be the opening words of a Carpenter’s song, now perfectly encapsulates my journey with Eosinophilic Esophagitis. Every step is a new frontier to explore. Concrete solutions and conclusions don’t really exist with this disease. You have to learn to capture and savor victories where you can.

Fortunately, my last blog was all about a recent triumph. I’m in remission! This means as long as I don’t eat an array of foods my body doesn’t produce eosinophils aka white blood cells in my esophagus. The problem is I can’t stay on this diet longterm because at this point I’m medically anorexic with a side of socially miserable (Food is everywhere!!! I just want to eat it all!). In case you haven’t read my other blog entries, my elimination diet required me to cut out all common allergens in addition to potatoes, corn, caffeine, and refined sugar. You never realize how unavoidable food is until you try to live without it. It turns up everywhere, especially the dishes you want the most and most definitely cannot have. Anyone on Whole30 or Paleo knows what I’m talking about here.

After being on this diet for almost 4 months, I’m so tired of eating the same foods over and over again. I tried to discuss a plan going forward with my gastroenterologist that made the diagnosis, and hit a brick wall. Amazing as she has been during this process, she doesn’t have much experience with EoE (who really does?!). Since I’m in remission her advice was to slowly reintroduce foods and see what happens. Then in a year I can return and see how I feel. This plan wasn’t as much a plan to me as it was a circle of insanity. All of my research shows the only way to know what is causing the problem is to reintroduce foods one at a time, and have an endoscopy performed every 6-8 weeks to biopsy my esophagus in order to check for the reemergence of eosinophils. However, she didn’t like this plan and vetoed it. I’m not a big fan of multiple endoscopies either, but it’s currently the only biomarker for this condition and I just want to know with absolute certainty what my triggers are.

After this conversation, I knew it was time to get a second opinion. With any kind of rare disorder or even with more conventional medical cases, you need to do this from time to time. It doesn’t mean you are a bad patient or your doctor is horrible. The only person that truly knows your body is you.  You have to trust yourself, especially if you have researched your condition and recognize you may not be getting the best possible or most up-to-date treatment. If your doctor is proficient in their speciality, they will stand behind your decision. In my case my doctor fully stood behind my decision to seek another opinion. She thought she was giving me the best advice, but knew things could have changed in how EoE is treated in the last several years. I scheduled an appointment with a gastroenterologist in Atlanta who specializes in eosinophilic disorders as well as my current allergist.

I’m someone that likes to be well-prepared. I like to know that I’m doing everything possible, especially in regards to my health. I don’t just want to feel well. I actually want to be well, to be healthy.

This has been a difficult battle for me. For the past decade doctors have labeled me “health anxious” and a hypochondriac. Instead of listening to me as I described my symptoms, they advised me to see a counselor because it was clearly a mental health issue. Even though my Eosinophilic Esophagitis diagnosis vindicates me, those labels have left me insecure and unconfident. I get nervous walking into a doctor’s office because I’m so afraid that I’m not going to be seen or heard.

In the end, I’m glad I was brave, and decided to go talk to a different gastroenterologist. He told me that everything I wanted to do is traditionally how it is treated, and we set up an endoscopy for October.  The first food I will be trialing is eggs. I have a strong feeling that it isn’t an EoE trigger, so that is why I figured it would be a safe food to eat before trying some of the others. Hopefully, it goes well and I can give you all good news. My allergist also confirmed that everything I was doing was right on track, and called me a “model patient.” We also did one more IgE blood allergy test to see if corn, potatoes, apples, and chicken could be allergies due to me still having trouble eating them when I tried to reintroduce a few of them. Fortunately, they aren’t traditional allergies, but could still be EoE triggers. EoE keeps me on my toes.

This disease has stolen many things from me, but the one thing it has given me over time is the gift of advocacy. I’m learning how to fight, defend, and trust myself. Whether it’s an illness, your education, your relationship with God, and the list goes on, you have to do the hard work. Doctors, pastors, and teachers provide great insight, and their expertise can open doors. However, experts don’t always have an answer let alone the right answer. They are authorities because they know a great amount, but that doesn’t mean they know everything. You have to take your life, your dreams, your mind, and your faith in your own hands, and fight for it. Don’t just sit back and rely on others to do the heavy lifting. Get off the bench and be part of the team.

 

Drumroll, please…

I started writing this blog entry two weeks ago after my follow-up endoscopy. After the procedure I came home, and began to write about the technical process, but nothing about how I was feeling in that moment. I kept my emotions, my feelings, my hopes, my fears in a vault. This morning I reread everything I wrote on that Tuesday, and deleted it all because this is what I was afraid to write:

What if I’m never well again? What if I’m forever trapped in this present reality of food avoidance? What if this is the end?

As we walked to the doctor’s office, this morning, my legs felt heavy. Each step felt like I was heading toward a guillotine. I turned to JJ and said, “I should’ve made a Michael Scott video like the two videos he made when he was waiting to discover if his true love, Holly, was engaged to another man or if they had broken up. One where I could calm myself down if I’m too excited by the news or lift my spirit up if I find myself plummeting.” If you aren’t a huge Office fan, then you might have no idea what I’m referencing, and I would apologize for it if I also wasn’t thinking, “Why the heck don’t you watch The Office?!”

The wait today couldn’t have felt longer. I prepared myself for two possibilities: 1) The eosinophils have gone down in number, but they are still present. 2) The eosinophils are at the same level they were before the extreme elimination diet or worse. In my heart of hearts, I wanted to hear: “You are in remission! You have no eosinophils in your esophagus!” I just couldn’t speak that hope aloud to anyone, except God in prayer. I said it to friends and family, but I said it with the same conviction as, “Wouldn’t it be awesome to eat all the donuts you want and never get fat?” It was a pipe dream. I just knew it was too good to be true.

I was scared. If this failed, I didn’t know what options I had left. The elimination diet framed around my LEAP MRT test results as well as eliminating common allergens was the only thing I felt might work for me. I tried Flovent for 2 weeks, and it made me sicker, so I had to quickly get off that, especially after I discovered it was corn-based. The elemental diet was out of the question for me because all of the formulas contain corn derivatives. I felt sick whenever I thought about what was to come.

When my doctor came in, I truly wasn’t prepared for what she told me. She told me I was completely in remission. Not one eosinophil!!! I was in complete shock. Not even one eosinophil?! That’s a miracle! She told me she may see numbers come down after treatment of some kind in patients, but rarely do they go from high levels in the 60’s and 40’s to zero in every tested area. I asked her if she tested all the same areas as the first endoscopy. She said she had and they were all zero. I started crying. I couldn’t believe it. WOW!!!

I’m still in shock. God blew my mind today in a way that only He can. This morning I started my day hoping for the best, but preparing for the worst. Now I sit here, completely shaken, in the best way possible. Words fail me. I’m speechless. All I could keep saying over and over again in the doctor’s office and now in my apartment is, “Thank you, JESUS!!!”

The past few months have been incredibly difficult. I have been on the hardest diet a person can be on, and having to live with the knowledge EVERYDAY that in the end it might not work for me. When everything inside of me wanted to quit, I had to keep going. Honestly, God gave me a strength and endurance that could only come from Him. I’m so thankful He refused to let me throw in the towel.

I have been handed from death over to life. Every year of my life I will celebrate August 7th as the day I saw the power of God in my life. As the day He intervened and answered the cries of my heart. There is so much I want to say and write, but my mind just keeps going blank. I’m enthralled with the joy and wonder of it all. I want to bear hug every single person that has been praying for me. I want to grab the hands of every single person hoping against hope as they wait on God, and say, “Don’t give up!” I want to shout from the rooftops, “I’ve been delivered!”

Today I’m celebrating. Today I’m enjoying this victory. There is more to come on this journey and I know that I still have a long way to go with adding food into my diet again, but today the impossible became possible. Today I got my miracle.

This is the day that the Lord has made;
    let us rejoice and be glad in it.

Psalm 118:24 (ESV)

Waiting in Hope

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At 1:25 this morning, I was still wide awake. I was up researching more ways corn can be hidden in my food. As my husband slept soundly, I was silently freaking out that my body isn’t healing at all and that any progress I have made is a mirage of a desperately hungry person.

My follow-up endoscopy is on Tuesday, and I’m terrified. Not of the actual procedure, but of what the results will say. Will the results say I’m in remission or at the very least on the road to recovery, or will they reveal I’m as sick as I ever was? My biggest fear is that I will be handed a non-stop, one-way ticket to the Land of Hopelessness. It’s one thing to be unwell for a season, but it’s something entirely different when the cure isn’t even on the horizon.

This last week a friend asked how she could pray for me. I know I have great friends and family praying over me during this tumultuous time, and they will never truly grasp how much my spirit depends on these prayers. Prayers are my life support as my spirit weakens in the face of continued hardship. They push me out of the grave, and fuel me to keep on living. However, I don’t like asking for prayer. It’s always been a deep struggle of mine to admit and concede weakness. God is using this season of my life to teach me I don’t need to be afraid of my weaknesses, and learn to believe that He really is bigger than they are.

Prayer reminds me how vulnerable and desperate I am for a miracle. A miracle that modern science can’t provide. A miracle that I can’t deliver on my own apart from Him. A miracle that only God can perform. I need the supernatural, and I need it at a time when my faith is at its absolute lowest and my fear is at its highest. As she asked how she could pray for me, I broke down crying. I couldn’t hold back the tears any longer. I need God to come through in a way I have never needed before in my life, and only He knows what will happen.

Over the last few weeks, I have spent very little time weeping, which compared to the last few years has been a phenomenon in and of itself. I have just keep pushing forward; running the course set out before me. When I have felt depressed that I couldn’t eat pizza or have a cup of tea, I would hope that by following this plan so strictly that one day I could. I would look forward to the day where I can eat a burger without gulping down a glass of water, so that it wouldn’t hurt so bad going down my throat. Yet, on Tuesday I will find out once and for all how my body is responding, and whether or not my eosinophils have lowered to a normal range.

I would love to write the lyrics of “It Is Well With My Soul” here on this blog, and tell you without a shadow of a doubt that I trust God in all of this. I would love to say that even if He doesn’t remove this burden from me that I won’t lose hope; that I will continue to trust in Him no matter what the results say. Yet, if the results say this intense elimination diet hasn’t helped in the slightest, it will be a blow. It will cut me to the core. My heart will be shattered.

I’m not going to say, “That’s okay. Maybe God has something better planned through my continued suffering.” I don’t think He expects those words from me. I can say that even if God chooses not to deliver me from this (as scary as those words are to type…), that He bled for me once and bleeds for me now. I know He hurts when I hurt. David wrote this about God:

You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book. – Psalm 56:8 ESV

Even as the light fades and darkness crouches in once again, I know God is with me. God wants me to depend on Him, not because He is cruel and aims to pull the rug out from under me. He wants me to know that His goodness and love aren’t built on me and what I bring to the table.

If we are faithless, he remains faithful—for he cannot deny himself. – 2 Timothy 2:13 ESV

Tuesday will be difficult, but the two weeks of waiting after will be much harder.

Please pray that:

  • I don’t preemptively start wearing sackcloth and ashes. I tend to be on the dramatic side. Whenever I read about the people in the Bible that were professional mourners as a young adult, I remember thinking to myself, “I probably have the skill set for that job.” I’m sure in those moments God up in Heaven facepalmed, shook His head, and started to hum “How Do You Solve a Problem Like Maria?”
  • the procedure goes well and that I don’t feel sick after it is finished.
  • my eosinophil levels in my esophagus have lowered to zero.
  • my slight case of gastritis has resolved thanks to the elimination diet.
  • I can add more foods to my limited diet without repercussions and extreme discomfort.

Trial and Error

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“This is the land of Narnia,’ said the Faun, ‘where we are now; all that lies between the lamp-post and the great castle of Cair Paravel on the eastern sea.” – C.S. Lewis, The Lion, the Witch and the Wardrobe

Sometimes I have so much to write that I’m paralyzed by what to say first. The past couple of weeks have been filled to the brim with blessings and disappointments. More sweet things than sour ones.  It reminds me of when I was a kid, and my parents would ask me, “Would you like to hear the good or bad news first?” There is probably some kind of psychological truth revealed by your preference.

I can’t remember which one I liked to hear first as a child, but as an adult I would rather hear the bad news first. Rip it off like a band-aid. Praying to God the whole time that the good news softens the depressing blow.

If I have anything crummy to report, you should know by now it probably has to do with my health. In my last blog entry I excitedly talked about adding potatoes, apples, and olive oil to my diet. Unfortunately, my body hasn’t been a fan of all three. Baked and fried potatoes gave me some of the worst EoE episodes I’ve had in a while. I don’t know if my body wasn’t ready for the thicker texture, if Aunt Flo messed me up (Sorry, but not sorry. Periods are a real part of life. Get over it.), if I should have bought organic (apparently, potatoes are the #1 vegetable you are supposed to buy organic…didn’t know that until after the fact…of course…) or if my non-organic extra virgin olive oil contained corn oil (Olive oil sometimes contains soybean, corn, or other vegetable oils. They don’t have to claim it on the bottle. Awesome, right?).

I have kept organic apple juice for the most part (Uncle Matt’s products have worked well for me for both orange and apple juice.), and am still testing out if that is safe. Also, I tried Lay’s Simply Potato Chips, which only has 3 ingredients: potatoes, expeller-pressed sunflower seed oil, and salt. Irony of ironies, I had no EoE episodes with these chips, but I think because it’s a  simple carbohydrate (I am still not eating refined sugar or any other simple carbohydrates.) I experienced an intense food coma 15 minutes to a half hour after eating them. I think my body just isn’t ready for them, so as much as I would love a “cheat food” it just isn’t worth it.

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Loving my Shop Ashley LeMieux top! I’ve replaced food with shopping. That’s healthy, right?

Now for some news on the positive side, I have lost more weight, and am now in the high 160’s. As glad as I am that I’m losing weight, there is no way I can sustain this diet long-term. Basically, I’m medically anorexic. I’m not getting enough calories everyday to function at a normal energy level. However, I will say the limited diet definitely feels like it is helping my throat and stomach to heal. The only way to know for sure that this intense elimination diet is working is to get a follow-up endoscopy. I made an appointment last week, and my gastroenterologist was really supportive and impressed with everything I have been doing. She understands and agrees I can’t maintain this current diet long-term. She scheduled me for an endoscopy on July 25th. By then, I will have been off all common allergens and caffeine for over 12 weeks as well as corn and refined sugar for 8 weeks.

This diet has been both physically, emotionally, and mentally taxing. It’s not for the faint of heart. If you have EoE or another dietary related illness, and are starting an elimination diet, don’t give up! Keep fighting. You will not always feel great on this diet, especially at first. I’m not going to sugarcoat it because most likely you can’t have sugar. Sorry bad dad joke.

I have both good and bad days. At the beginning it was a string of bad days taunting me. Now the good days are more victorious. My diet may be limited, but my spirit has started to be unleashed from the chains of the past 5 years. As my throat and stomach recover, my unshakeable anxiety and depression have been slashed and cut down in size.

I can sing again. Joy is awakening from her long slumber.