Celiac disease – two years later…

When I was first told I’d never be able to safely consume wheat, rye, or barley again – I felt a certain relief in knowing that years of weird symptoms had an explanation. That relief was brought to reality when I was getting a massage for back pain (which I no longer need to do). I was telling the masseuse about the new diagnosis of celiac disease and she said, “I had another client who got diagnosed. She said it was the worst thing that ever happened to her.”

I can see that.

Last week I was thinking about which finger, toe, or feature I would sacrifice in order to have gluten again. I decided I’d give up one or both pinkies, and then run to Panera for the largest bagel they have on the menu. I then dreamed of being able to eat at office Christmas parties, or at every friend’s house, or at every restaurant. I dreamed of a world where holidays dinner felt like a time of peace, instead of a time of stressing about cross contamination. Sure, I’d be down a pinky or two – but everything would be so much easier.

The thing is, two years later, I’m not miserable. My life is wonderful, and I would say I’m 95% certain how to handle this celiac thing. I figured out how to cook at home, which restaurants I can eat at, how to tell co-workers I can’t eat the food they made for me, and most importantly – how to advocate for myself. Explaining to strangers over and over again that your dietary restriction is a disease and not a fad or a choice gets exhausting. “Nope, I’m not doing this for paleo or Whole30. This is the rest of my life, and I will actually get sick if you have a shared fryer.”

My body is healthier. I’m not sleepy all the time. My back doesn’t hurt all the time. And I don’t have to run to the bathroom after every single meal. This autoimmune disorder is in check. This year we were very fortunate to go to Italy (land of gluten free everything – yes – really), and Disney World (also – land of GF options galore – really). When first diagnosed I was worried I would never step foot in another country or be able to travel to other states, but that has not been the case thanks to the internet.

There are two things I still find difficult about having a dietary restriction are: 1) listening to people complain about food I cannot eat, and 2) feeling left out.

I try not to feel angry about the women in the office who say, “I can’t eat that doughnut… I’ve been so bad.” Watching poor little defenseless donuts left to go stale because of guilt over eating gnaws at my soul. I think of the little donuts I left behind over the years. I’m sorry little donuts. If I had known, I would have eaten all of you.

I’m better at cooking and baking than I ever thought I would be. I know the properties of weird flours and can name nearly every other food allergy. I can read food labels like a boss, and know how to pronounce weird ingredients most don’t know exist. Also, my level of empathy for people with food restrictions is off the charts. “You can’t do eggs or soy – ok – can I make you this? Here are the food labels.”

I’m exceptionally grateful to have family and friends that understand celiac disease and support me. My husband, mother, mother-in-law, church small group, and many others go out of their way to include me. But I think the woman the masseuse mentioned who was miserable did something I have to try not to do. I’m guessing she started counting the times she was left out; the holidays make it really hard. A few months ago I noticed I had counted the times I was left out of team building activities that centered around food. It’s hard to feel like you’re a part of the team building, when the team gets food and you do not. “These treats are for all of your hard work! Oh Stephanie, I’m sorry….” One month I counted how many times I got left out, and when the number got to be over seven I stopped counting. Becoming bitter is a choice, and I don’t want to become that person.

I wish people tried harder to understand. I wish people I’d told 30 times I have celiac disease would stop offering me bread. But in the large scheme of life, this is a small issue. Life is unfair. But whatever. It’s unfair to us all. I do not have this one little thing, but in the scope of the world – I have nearly everything. I can be bitter about missing donuts, or I can drive to Meijer and buy some donuts of my own.

Two years later – I’m 95% of the way to full acceptance.

Next year – I hope I’ll be closer to 100%.

Let’s talk about my breasts…

I’ve written about many different topics on my blog before. Being pregnant has brought up a topic I never thought I’d discuss: my breasts.

Breasts. Fat with glands topped off with nipples. On a biological level, one of the things that separate us from reptiles is mammary glands, which give us the ability to produce milk to feed our young. Yet, we live in a society, which has a culture. Like every culture, we give many meanings to different things. Breasts, in our culture often take on a sexual connotation. Women’s breasts have been objectified and treated as play things for other people for centuries (see: nearly any magazine, newspaper, TV show or movie).

I give this long introduction in order to say: do you even realize how much you’re talking about my breasts? Whether they’re sex objects or used for milk, someone is bringing up my breasts – and I’m not really a fan. I’ve also found that if someone is bringing up my breasts, they usually have an opinion they’re dying to share with me. I can’t think of a single time where I’ve gotten to ask a man what he is doing with his penis. “Sir, I see you have seven children. Will you be getting that vasectomy we all think you need?”

Since everyone seems to want to know what I’m doing with my breasts, I figured I might as well blog about it.

Decades ago, in a very different time, we pushed formula. In the last few decades, we as a society have come to value breastfeeding. I’m not here to tell any woman how she should choose to feed her child. I would, however, like to point out that I think it’s likely that the increased discourse on breastfeeding has led to an increase in people asking strangers the question, “So, you’re breastfeeding, right?”

I do research for a living. I’ve read A TON on the subject. I’ve come to the conclusion that people will read about what to do – and then agree with whatever conclusion they started with. Thus, I’m not about to regurgitate my own conclusions.

In the last several months, I’ve gotten asked by every type of person whether I would be breast feeding. I’ve had at least six people assume I’m breastfeeding when they’ve said, “Now when you breast feed…”

I was 7 weeks pregnant and getting my blood drawn. The lab tech, who I had never met, asked me, “So, are you breastfeeding?” It’s a simple enough question, and I’m an open person. Yet I couldn’t help but wonder whether I would be judged based upon how I answered.

I’ve thought about whether I would breastfeed, but there is another layer to the subject I’ve never heard discussed. What do we expect of breastfeeding for women that have survived assault? I’ve lived through sexual assault. As a result of that I have a strong dislike for anyone staring at or touching my breasts. Yeah – awesome side effect, right? I’ve spent years trying to overcome this shame and trauma associated with assault. Now, years later every other day someone wants to ask me about my breasts. So, I did what every logical millennial does when faced with a problem, and googled solutions.

“Sexual assault and breastfeeding”

“Breastfeeding and rape”

I did not know what I was going to get. I was hoping I would get someone who said, “Hey girl, you’ve been through enough. Screw those jerks who want to tell you what to do with your body and you do you!” Instead, the majority of websites I encountered were best summarized as, “Learn to value breastfeeding, because it’s the best!”

I felt like my experience and after effects was totally ignored. I’ve spent years trying to get over it. I know that a baby simply being born changes your life, but I highly doubt a birth helps you overcome trauma in a manner of seconds.

In the throes of feeling discouraged, I thought a long time about what is right for me and my baby. Breastfeeding sounds cool, but I also hate the idea of my boobs being attached to a baby 24/7 for six to twelve months. I want to bond, but I also want sleep and my husband’s help with feeding. So, as of today, my plan is to try good ol’ breastfeeding. If I hate it, I’ll try to pump and feed. I’ve spent way too long time feeling guilty about my breasts, so if I: hate breastfeeding, think pumping is the worst, need sleep, want more help form my spouse…. I’m grateful that formula is a wonderful option. I hear Aldi formula is affordable and well-liked.

Fed is best. Not being continually traumatized is best. That’s good enough for me – and my baby. So, can we stop talking about my breasts now?

The Things We Never Carry…

We sat there, three years ago, she and I.

The things he had done to others read like a terrible movie script.

It started off with a few drinks, then grew to more. Then, it morphed into pain pills. Pain pills became an escape from everything. Eventually he stopped remembering to pick up their three kids up from school. Until one day he lied about driving home with the kids in the back – completely wasted.

They’ve been divorced for about two years now. She just started dating and is rebuilding a life that she saw disintegrate. No, she wasn’t a perfect wife. She didn’t give him enough attention. She held a grudge and never seemed engaged in what he loved to do.

As for him? As of today the life I was saw him lead has totally crumbled. The guy that once prayed for Del and I is no longer exists. Maybe he never did anyway? As far as we know he has few friends, few hobbies (other than drinking and pills), and continues to be okay slipping further away from the light. We thought he’d hit rock bottom a while ago, but we learned our definition of rock bottom is not shared by him.

I’m not here to pass judgement on him. On the contrary, me heart hurts for the pain he must carry. Sure, maybe he’s just an asshole, narcissistic, addict. But I don’t think so.

I wish he was my only old friend who chose to fall away. But as time passes the list of people that choose darkness seems to grow. And as that list grows I found myself wondering: are they carrying everything, or are they refusing to carry anything?

Like any sane person I’ve dreamed of what wise and blunt things I could say. The words go something like, “You dumb shit head. EVERYONE HAS PROBLEMS. The earth stops for no one. The biggest thing in your way is yourself. Get off your bitch ass, stop hurting everyone, and find a way to fix your problems. God loves you, and He forgives you. Always. ”

But those are words I think, but never speak.

I’m aware of the reality that few of us want advice, but yearn merely for affirmation. I’m not alone in that. I rarely want feedback, and instead want to hear how great I’m doing. Sure, I’m not doing drugs. But drugs aren’t the only habits that split us from people. What does my own pride cause me to fail to see? What grief or anger am I refusing to forgive and confront?

I’m aware the we cannot make people see what they do not want to see. In the book the Wizard of Oz, Oz was never green. The Wizard gave the whole town green glasses. As a result they believed their beautiful city was shiny and bright and green. But one day they were told to take the glasses off. When they took them off, they realized a man behind a wall had been lying to them about their entire reality.

We all have our own set of glasses. There’s a man behind a wall constantly limiting our view. For some of us, we gradually get to see more and more and our view becomes wider. Others never even know they have glasses.

There’s only been one way out of any mess we create. That way is out and through. Whatever shit we create, if we want it to end we have to endure the pain we cause. For me, confronting my own failures and the pain they have caused others is hard. Knowing I fell short and knowing I caused someone pain just sucks ass. Thank God for grace.

I believe in grace. I know it’s there for me as it is for everyone, and all I ever have to do is accept it. The grace of God is always here for us, and it’s easy and free. But first, we have to see what we are carrying. Some of us will be fortunate enough to see what we carry and how it causes us to fall. I pray I continue to accept grace every day, and I hope to gradually see the things I didn’t even know I was carrying.