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Birthday Letter to Esper

Dear Esper,
It's two months after your 3rd birthday and I'm finally sitting down to write your birthday letter. Two was quite a roller coaster of a year! Mostly because of what I've had to go through. Starting school, Celiac Disease, moving, etc. I've shaken up your world a bit this year and I hope it's ok. Yes, there is guilt about all the times I felt sick. Seeing your mom laying on the floor was hard for you when you wanted me to play with you. I'm sorry. I'll probably say that a lot in our years together. (And after you've moved out and started your own family.) I'm a very imperfect parent and you'll learn that one day.

I recently heard about a study where kids are given a cracker box and asked what is inside. They say crackers, of course, even though the box is filled with rocks. But when asked what the kids think their mom would say was in the box, the 3-year-olds say "rocks." The older ones know that their mom would think it was crackers too. But no, not the 3-year-olds. You are still at this developmental age where you think Mommy is Queen of the World. I must admit, sometimes it is nice. You ask me regularly, "Mommy, do you know evee-thing?" I say no, but you seem like you don't believe me.

You have taken to following me around our entire tiny little duplex apartment saying that you want me in the same room as you. I'd like to point out, dear, that the entire apartment is like one single room. It's been really hard for me to have you attached to my side every time I look down, like a new puppy learning to heel. I frequently turn around and bump into you. I don't know what it means except that for whatever reason, you want me around a lot. I'll take it as another phase in your development and try and embrace it, because one day you will most certainly not want me to rock you in my rocking chair and sing you songs. We could do that all day if it were up to you.

You're very hilarious and what's great is you understand humor and know what will get a laugh out of me. ("Mommy, smell my butt." *giggle, giggle, giggle.) It's hard for me to understand how you are so intellectually mature yet have a hard time getting to the potty to pee in time. You love to dance and will make me put music on a few times a day so you can shake it. You come up with some great dance moves and look so free when you're prancing around the room. It feels like pure joy captured in a 3-year-old.

We all grow and mature in different ways and it has been so fun to see your brain mature in (what a proud mom thinks is) a very quick way. You have begun coming up with elaborate stories to tell your stuffed animals about girls who live in the woods and have adventures. You come up with thought-provoking questions that I can't answer like: "Mommy, where does God live?" You tell me you wish your daddy lived here with us so you could see him all the time and my heart flip-flops and then falls over exhausted.

You challenge me in so many ways. You force me to be patient when I don't want to be, assertive and consistent when I feel I lack the skills, and loving and nurturing when I sometimes just want to be alone. You hug me when I'm sick or sad and insist on that making me "feel all detter now." You get "so 'cited" to go to the park or see a friend or go to the lake that I can't help but feel that maybe I should be getting more 'cited about the simple things in life. Thank you for giving me all this and more every day. I love you more than you could ever know.

Love forever,
Your Mommy

Thirteen

I was at the pharmacy waiting for my medication and the nausea came. But with it came fear, frustration, a need to be understood, a need for answers. It all accumulated and here I was, crying in the pharmacy. The sweet pharmacist brought me a box of tissues and asked if I needed anything. My daughter went into nurture mode because this is just what she does. She has since she was tiny. She climbed up on my lap with a tissue and wiped every single tear as it was falling out of my eye.

"You all detter now Mommy?"

How could I tell her anything but yes, completely and totally? So I did. Even if it was a bit of a lie. Guilt. She shouldn't have to be the one wiping my tears. When she asks me what's wrong, how am I supposed to tell her that each day is a very large mountain for her mommy to climb? That just as quickly as I can have a good day where I go to bed feeling competent, the very next day it can all collapse. Then I am left wondering how I can be a good mom to her when I am such a complete jerk to myself.

We got home and I decided to do some therapeutic weeding. She joined me and was so happy to be digging a big hole. Our conversation became one about eating to become strong and she said,

"I goin' eat lots so I can get strong and dig, dig, dig and be a mommy to my babies." (dig=big)

Can this really be her profession of choice?

"How many babies are you going to have?" I ask.

"One, two, eight, eleven, twelve, tirteen!"

"Thirteen?"

"Yup!"

Somewhere between point A and point B, Esper decided being a Mommy is cool. Did I give her that? Does that come from me? My god, child. If you want to do this 13 times than I must be doing something right.

Today

We needed food desperately but she wouldn't put her shoes on to go to the store and I didn't have the energy to fight her. I laid on the floor, nauseous from either the bite I took of gluten-free english muffin or the strawberry banana smoothie I made.

All day she kept pulling out new toys and making new messes. As I tried to adjust the flow of air coming out of the swamp cooler (open this window, close that one, cuss at the heat under my breath) she made it very clear that she had a list of demands I was not meeting. "I'm thiiiirsty. I hunnngry." Not wanting to turn my oven or stove on to cook something (I need a microwave), I rummaged through the cabinets to find something to feed her. We eventually made our way to our local favorite raw food place to get some ginger lemonade, a vegan wrap, and some grapes. To my delight, she asked to use the bathroom three times in the twenty minutes we were there.

A plumber was downstairs fixing something so my water got turned off without my knowing and I had just pooped. Did I mention that my kid is extra sensitive to smells due to her submucous cleft palate? "Ewwww Mommy what dat smell like?"

All day I had to limp because my right knee had decided to not work. Shooting pains through my right arm occasionally joined my knee pain. Stomach cramping had me moaning in pain in the library too.

She did great with peeing all day. No accidents. But she still doesn't know there's poop until it's coming out of her. And onto my foot and my favorite pair of sandals. After her bath I read her three books and put her to bed. She yelled after I shut the door and wouldn't go to sleep until I stayed and rubbed her back. She finally fell asleep around 9:15. The house was a mess. It called for me to come and clean it and finish those dishes I started. My digestive system called out for me to go to bed so it could get some healing time in. We live in a small duplex. I need space and time to myself and this short time is all that I get. And here I am blogging.

P.S. I just killed the nastiest, biggest spider that was crawling on my arm.

Celiacs + Sugar = No Bueno.

I haven't posted much about my diet and my newly diagnosed disease since March. I thought four months later I'd at least be on the verge of feeling awesome. And in some ways I do feel a lot better. But I'm still struggling with headaches, feeling tired, and sharp stomach pains. Kudos to those of you who actually go on an elimination diet. That really is the best way to figure out what foods you are sensitive to. After cutting out gluten, dairy, and recently red meat, I'm starting to see a pattern when I eat sugar. Ahhh sugar. The glorious ingredient that makes food taste good. Especially gluten-free food. Well SURPRISE, many celiacs suffer from fructose malabsorption. Am I surprised? At this point my body is having a hard time digesting air.

Here are some foods you should avoid if you are experiencing fructose malabsorption:

• Fruit — apple, pear, guava, honeydew melon, nashi fruit, pawpaw, papaya, quince, star fruit, watermelon;
• Dried fruit — apple, currant, date, fig, pear, raisin, sultana;
• Fortified wines
• Foods containing added sugars, such as agave nectar, some corn syrups, honey, and fruit juice concentrates.

Yup, apples just about do me in. And agave? Shit. Here I sit sipping on an Oogave root beer. Wine?? God must hate me. I can have foods that contain equal parts glucose and fructose, but it might be easier at this point to just cut out sugar altogether.

So... no dairy... no gluten... no red meat... and no sugar. Somebody heal my gut pronto.

Leave me a comment. Have any of you gone off sugar? Am I insane for even considering it?

Mom

I see her luggage sitting on the kitchen chair and slowly tiptoe into her room. There she lies on her bed, her knees curled up under her afghan. She was gone for a while, and now she is home. When she wakes her footsteps will sound even and premeditated from where I sit in my room under the kitchen. The steadiness is soothing. She just keeps going--one more dish to wash, one more shirt to fold. She never questions it, never leaves it for another day. Just continuous, dependable, repeating. Her ways confuse my scattered brain and bring it comfort. I owe so much to this woman who gave me everything. My love of art, music, and dance. My sense of humor, my love of learning, and my intense hunger to read. Her hand brushes through my hair. Her little frame hugs me tightly and she whispers she loves me. I wait for her to wake up so I can tell her I love her too.

Gluten Free, Dairy Free: What I Miss Eating

Lately I've been mourning all the foods I can no longer eat. For me, it's not necessarily the flavor that I really miss, but the social experience of eating whatever food it is.

I miss:

• Pizza benders from Italian Village (a family tradition)
• Pizza in general (though I had some killer pizza last week in Berkeley here.)
• Sandwiches from Village Baker.
• Sandwiches from Toasters.
• Being able to get french toast, waffles, or pancakes when going out for breakfast/brunch.
• Robb's killer homemade french toast. Hopefully we can find some GF bread so he can make it for me.
• My sister's homemade banana bread. Especially when she brings it over freshly baked.
• Donuts. Especially from Banbury Cross. Especially when my dad makes a random trip and brings some home on the weekend.
• Ice Cream. I had some coconut milk ice cream but it just wasn't the same. 
• In general, being able to eat anything at a restaurant. These days I'm limited to a couple items on the menu, and even then I'm not always 100% sure that the sauces don't contain gluten, or that the preparers did all they could to avoid cross contamination. 

It's surprising the things I don't miss as much as others. I thought I'd really miss regular bread, and sometimes I do, but usually it's because I want a sandwich. I thought I'd miss milk a ton but I've adjusted to my almond milk and like the flavor. One perk of going gluten free is that the food that is made to replace regular items like muffins (unlike bread) is soooo good because recipes are tried and retried to get the flavor just right. So muffins, cake, cookies, and some other sweets taste great to me. There are some really good GF breakfast cereals that I enjoy more than regular ones.

Looking pregnant but nope, I just ate wheat or dairy

Other things I don't miss:

• Never knowing when I'd be stuck sick in a bathroom- at a restaurant, at a store, with my toddler.
• Feeling bloated (and looking pregnant) and sick after every meal.
• The ten pounds I said goodbye to.
• The unhealthy eating habits I was making. (Much easier to avoid fast food now)
• How tired I always was.
• How moody I always was. (still have my moments. ;)

So I try to count my blessings and appreciate the good when I'm crying over not being able to eat something I really want to. It really is a lifestyle change, and I'm still in the learning phase. I'm looking forward to a future that includes me being more prepared, more knowledgable, and more in control of the food I eat.

Teaching Kids To Eat Healthy

  One day Esper wanted to have a picnic with her toy food so she hauled it all out to the living room and threw the food on the blanket. Oh, good, I thought. An opportunity for an object lesson. (Though really how many object lessons stick when you're two years old?) I separated out all the bread products in the group and explained to Esper that these foods make Mommy sick. (Jury's out on if they will some day make her sick, but so far so good.) What's left is a glorious mix of colors. I told her that our food needs to be colorful. Variety is good for our bodies, but of course the color our stomachs love the most is GREEN.

Speaking of green food, I went and bought kale for the first time to make a yummy green smoothie. I put in a handful of kale, cold water, crushed ice, pineapple, a banana, strawberries, and almond milk. Esper had to scoot her chair over to the counter to help me. I think this is key to getting a child to try new foods. Let them see what goes into making it. While the smoothie was still in the blender I got out a straw to taste it and of course she had to mimic me. She was hesitant because of the green color but decided to try it. She loved it! I poured her a cup and she gulped it down. I got my kid to eat kale. That's what I call success!

 

Let Me See Your Tootsie Roll

I was having a fabulous, amazingly awesome weekend. I had ENERGY.

I have started taking some supplements: CQ10 Enzyme, Calcium + Magnesium, Cod Liver Oil, and a full spectrum vitamin. I've been reading The Gluten Connection and wanted to try the approach the author suggests to heal your body. The f.s. vitamins I bought say "gluten-free" on the label but also list brewer's yeast as an ingredient. WTF? So I need to contact the manufacturer before I take those. Also, the magnesium seemed to cause some diarrhea so I stopped taking that one.

I also have tried to change the way I eat each day to see if that would help with the blood sugar problems I was having. I found this doctor's suggested schedule very helpful which she bases on your body's natural spikes during the day.

Breakfast: 8 am or as soon as you wake up. Include protein.
Snack: 9 am
Lunch: 11 am - Noon
Snack: 2 - 3 pm
Dinner: 5 - 6 pm (lightest meal of the day)
Snack: 1 hour before bed (no refined sugar)

I don't know if it was this new schedule, or the supplements, or both, but I felt great. Which was good timing since it was the bf's birthday.

But then I made a big mistake. I forgot to pack a snack to eat at school on Monday. I had my lunch around 2pm and then was feeling hungry when class got out at 4. Our school doesn't have the best selection of gluten-free snacks so I quickly read some labels and bought a tootsie roll. You know, the long ones? I don't know what the hell I was thinking. It was probably the worst time of day to have nothing but sugar. By the time I got home I had a terrible episode and had to crash. After that happens, it takes a while to feel back to my normal self. Tomorrow I have two tests- Algebra and Anthropology. Here's hoping I have a clear brain. You bet your ass I will be packing some snacks with little sugar and lots of protein.

Oh, also I got test results back from the doctor on my iron and thyroid and both are fine. Next step is to see an allergist.

The Diagnosis

I've been wanting to start a blog about all that is going on for a while now. I was trying to setup a domain and a great-looking site but found I just don't have the time or money right now, so I'm going with free and easy. Reading Mikensi's blog tonight was the push I needed.

I can't say when all of my symptoms started because with Celiac Disease, the symptoms are so varied. I have suffered from depression since the age of 14 and been on three different anti-depressants since that time. I had always done really well in school up until that time and then I just couldn't focus or find motivation. Fast forward to 2010 when I was pregnant with Esper. I will admit that I didn't eat that well during my pregnancy. I also started getting some intense pain and tingling in my right thigh and could barely stand to stand up, let alone exercise. I also developed some intense heartburn. It was so bad one day I went into the hospital and they just laughed at me, indicating that as a first-time pregnant woman, I surely could put up with a little heartburn. After I had Esper I continued to have insane heartburn. I would wake up in the middle of the night moaning in pain, grabbing the sheets as tightly as I could, up on all fours (the only position that helped lessen the pain a tiny bit). My doctor did an ultrasound and saw gall stones. My sister and grandma had to have their gall bladders removed for the same thing. After I got my gall bladder out I assumed that I would start feeling better, but in fact things got worse. As a mom and student, the work required of me each day does not leave room for resting or leaving things to do later. So I went to my primary care doctor who told me to try some Prilosec for a while. It didn't help. The main symptoms I was dealing with on a daily basis were diarrhea, headaches multiple times a day, muscle pain, abdominal pain, nausea, and heartburn. Of course other symptoms (insomnia, brain fog) I'd come to find out later were also part of this, but at the time I thought it was all stomach related so I went and saw a gastroenterologist. It was actually my bf who threw out the notion that maybe it was a wheat problem. I really didn't think that was the issue, but my doctor tested me for Celiac Disease and sure enough, my Anti-Tissue Transglutaminase Antibody test was positive. He scheduled an endoscopy to look at my small intestine and the results were somewhat odd. The biopsy showed no damaged villi, which is a marker of Celiac. There can be errors with the biopsies  but he says I'm the first patient of his that hasn't shown signs of Celiac in both the blood test and the endoscopy. So his diagnosis is Latent Celiac Disease which basically means nothing to me except that that wheat shit ain't good for me, yo.

So... now what? I had already gone to the store and bought all of the yummy gluten-free equivalents to my favorite foods. I read the hell out of the internet. I memorized bad ingredients to recognize on a food label. I obsessed. Part of the obsession came from the frustration that I just WASN'T feeling better. At all. In fact, I was feeling worse. And I had more symptoms to add to the list. Every time after I ate a meal, I would have what I will dub "an episode." My body would get extremely fatigued, parts of my body would tingle or go numb, my face would flush and feel on fire, extreme nausea would set in, and I'd have to get up and pee a lot. My doctor doesn't know what the hell that is. (Could it be a gluten withdrawal? Another food allergy?) Let me tell you what, though. Ask the internet, and they will give you 30 different responses. My friends on Facebook have been awesome and very supportive and I'm glad they are all trying to help me. At this point it's like a trial and error sort of thing to figure out what is going on. My therapist does some great body talk with me and found that my triple-burner meridian was out of balance and that my adrenal glands were under extreme stress. Sounds about right to me. She gave me some exercises to do but also gave me a lot of encouragement that my body was in a state of healing. That I needed to trust that what was happening inside of me was working and that if I needed additional information about how to heal, my body would clue me in. I soaked in the healing energy that the therapy session provided and felt a new sense of hope.

Already I have seen little glimmers of sunshine peeking through. The regular diarrhea I was having has stopped. I no longer have intense cravings for bread and sugar. I seem to be able to focus more, for longer periods of time. I get sleepy around 10pm. I am not bloated after every meal. I have a long way to go on this journey but I see a future which doesn't include me being miserable all the time, and that is good enough for me to get up in the morning and try again.