Imagine Corn Allergies

Someone else shared this about celiac disease and I have edited and added to it to be about corn allergies. #allergyawareness #itshouldntbethishardtolive

Imagine Corn Allergies

Imagine, if you will, finding out you have a disease or condition where food makes you sick.  At best you have multiple symptoms, all the time, ranging from a rash, to hives, to vomiting and diarrhea. At worse, it can cause anaphylaxis and death.

Imagine never being able to eat the same food as people around you.  Always having to watch what you eat.  Having to eat food that not only doesn’t taste very good most of the time, but is very pricy. 

Imagine having to eat like this day after day, week after week, month after month, year after year for the rest of your life.      

Imagine going places with other people and they want to try your food, just to see what it tastes like.  Imagine having to stand there and listen to them ridicule the food and go on about how bad it tastes.  Imagine being the one standing there knowing your food is not the greatest tasting but you don’t have a choice to eat the more tasty version, unlike them who can go back to eating as always and not having to give up taste in exchange for their health.

Imagine having to cook every meal at home, every day, breakfast, lunch, and dinner.  Imagine not being able to simply order take out when you don’t feel like cooking.  Imagine coming home at night, tired, hungry, and exhausted from the day and not knowing what to eat and too mentally and physically exhausted to think about it.  Imagine sitting there crying because you are so tired and overwhelmed by doing this day after day, with no end in sight, but you still have to cook your meal for that evening or just remain hungry.

Imagine worrying about reacting to food particles in the air, so you can’t go to that restaurant that uses flour and bakes from scratch, or go to a petting zoo for fear of reacting to their feed, or even go to a pumpkin patch because what if they have a corn maze or a corn play pit for the kids. Imagine wearing an N99 mask to go anywhere there is popcorn being popped (the mall, car dealerships, farmers markets, hardware stores) for fear of reacting to the popcorn in the air.

Imagine going to the grocery store and taking twice as long to shop because you have to read every label to make sure you won’t get sick, and having to trust that there are no hidden ingredients that are not listed that will make you sick.  Imagine having to worry about whether the items that are safe for you to eat really are and having to trust the packaging until you try it for yourself, risking possibly getting sick.

Imagine going to the grocery store, spending hours checking every label, only to leave with a couple items that you can eat. Imagine having to find and interrogate local farmers about their practices to know if you will react to their food. Imagine calling local ranches and farms about meat, asking about everything they ingest, then contacting the ones who slaughter and the ones who butcher and package and inquire about what products they use, how they clean, what they clean with, what they package with and if they’d be willing to use your safe products if possible.

Imagine bringing all this “safe” food home only to react after trialing it. You now have a freezer full of food that isn’t even safe for you to eat, food that was expensive and you couldn’t afford to begin with.

Imagine buying something that was previously safe, only to start reacting and after contacting the company finding out they changed the formulation but because of COVID mandates they weren’t required to change their packaging due to supply shortages.

Imagine going on vacation and not being able to go to a nice restaurant without having to worry about what you are going to eat and if the place is safe for you.  Imagine having to research every restaurant and their food to be sure they have food you can eat, every time you go out to eat.  Imagine being so excited to find a place that is said to be safe and has choices that you are looking forward to trying.   Imagine getting to that restaurant having to ask for special accommodations and a special food menu and then having to trust those foods are what they are said to be.  Imagine the person waiting on you giving you looks of annoyance, or worse, indifference.  Imagine having to worry about cross contamination with anything near you or anything where the food you are about to eat was cooked or prepared.  Imagine finally enjoying a nice meal out only to feel sick shortly afterwards because there somehow was corn in it, even though you took every precaution you could.   Imagine knowing that this is just the beginning, that tomorrow you will feel worse until the contamination is totally out of your system.

Imagine having to watch what kind of soap and shampoo you use.  What kind of makeup you use.  What pots and pans and utensils you use.  Why?  Because they either contain corn or may be cross contaminated with corn.  Imagine having to worry about feeding your pets and accidentally inhaling dust from there food only to get sick later because it was enough to get corn in your system.

Imagine not only having to restrict your closet because of the fabric and how its made, but also restricting your family’s clothes because your hand breaks out every time you do the laundry. Not only that but you feel itchy and uncomfortable just hugging someone wearing unsafe fabric. Then imagine having to make covers for all your furniture or to buy new furniture, carpets, rugs etc so that you can safely sit down. Imagine needing to replace all your bedding and possibly even your mattress just to be able to sleep safely without reacting.

Imagine knowing that this will be the way things are the rest of your life.  Never again able to have your favorite pizza, your favorite ice cream, go to your favorite restaurant, or even buy your favorite brand of make up or hair products. 

IMAGINE CORN ALLERGIES

It’s time to change the way society views food. It’s time to have open disclosure from companies. It’s time to question what we are eating.

Mental health check-in

It’s time to be real. I’ve been struggling the last little while. Struggling with being honest about how I am doing. Struggling with being real.

This part of my story is all related to breastfeeding and allergies and it goes back several years. I can only hope that by me sharing this I may help someone else, even just one person, to go and get support.

So to start we have to go back 27 months to when our oldest blessed our lives with her presence.

When our oldest, V, was born over 2 years ago we had some scares health wise (read all about it in The terrors of being a NICU parent) but our breastfeeding journey started out amazingly. Yes it took us a day and a very helpful nurse being a little forceful in helping V latch property. But she latched well, I got over the 3 week hump easily and I never had any cracks or bleeding or anything.

Fast forward to 3 months when we started realizing the V was reacting to something in my breastmilk. We knew something was wrong, green diapers with blood, abdominal pain, screaming uncontrollably, etc. This wasn’t my baby. I knew something was wrong.

I went to the ER because it takes 2 weeks to talk to our family doc. And he tried to gaslight me.

“Must be your cracked and bleeding nipples causing the blood.”

“um, I don’t have any cracks. She has a great latch”

“well then it must be from a milk clog”

“I pump once a day, if there was blood in my milk I’d see it”

“Well, she is happy so I wouldn’t worry about it”

What kind of response is that? How is someone being happy for a 5 minute period indicative of everything being ok health wise. I pushed to see a pediatrician and sure enough she had what is known as CMPA (cows milk protein allergy) and advised to cut out all dairy and soy from my diet, including derivatives. That list is like 40 ingredients!

I was prepared for the dairy, I already avoided most of it due to my own dairy allergy, but V reacted to things made in the same facility, so any cross contamination. I was also informed it would take 6 weeks for her to heal. The first few weeks I kept making mistakes, not reading a label twice, missing warnings on labels.

I bawled a lot. Mentally I struggled. I felt like it was my fault. I was failing her. I hurt my own baby. And it got worse from there.

I noticed after 4 weeks that she was getting better, but kept getting worse again repeatedly. Crazy enough we noticed a link after I ate popcorn. This opened our eyes and felt like we saw a light at the end of the tunnel. Little did we know how immersive corn is in our diets. I have had to completely overhaul our lives. I do a lot of food prep and honestly it is overwhelming, but something I was willing to do to keep my family safe and healthy.

One thing I wasn’t expecting was that I couldn’t keep any of the milk I had pumped while eating her allergens. I ended up donating my milk to a local mom in need of milk for her adopted baby whom she wasn’t able to relactate enough to fully feed herself. What an incredible feeling to know I could help someone else during our struggles! I think that first donation was just under 400 ounces of milk!

Things took a while to stabilize and from there we just struggled with adding foods to her diet directly. We ended up getting an allergist who diagnosed her with FPIES. Through all of this I continued to breastfeed her and we fell into a great rhythm.

Yes my diet was restricted because of her, but I knew I was doing everything I could for her. She was healthy and gaining weight. I always wanted her to wean when she was ready and after we found out we were pregnant I kept hoping she would want to wean. I wanted my body back, if even for a few months. But it wasn’t to be and I was ok with that.

Our beautiful Kae was born and she also latched well and didn’t have any nursing issues and man did I feel blessed.

And then after 3 days of V getting a bottle after Kae was born I nursed her. And I felt so beyond violated. I pushed through and helped her lay down for the night. I came out and almost curled up into a ball. I felt dirty. Violated. My skin was crawling. I didn’t know what had happened. I had never experienced that before and I was confused.

I tried to talk to J about it, but he was more confused than I was. “You just nursed her 3 days ago. Do you feel the same way with Kae?” I didn’t know what to say. I felt like I was betraying my daughter.

I had of course heard of breastfeeding aversion. Seen in mentioned in some mom groups. But usually only for people when they first started out nursing, not 2 years in. I felt like I could just plow through and it would go away.

Well over the course of the next 2.5 weeks I nursed her 8 times. And by the last time I actually had to fight the urge to throw her down on the bed and run from the room. My skin crawled. I felt resentment towards her. I dreaded bedtime. I couldn’t stomach looking at her. It just felt so horribly wrong.

To top it off I felt like I was abandoning her if I quit before she was ready to stop. Suffice to say there were many tears. I didn’t know what to do.

Finally a good friend said the words I needed to hear, “I think that switching to bottles is a really good alternative. She still gets mom milk and snuggles, but gets her mommy at the right mental space, which is so important. Your mental space is important, and you take on a lot. It’s okay to takes steps to be gentle with yourself ❤ you are a wonderful mommy.  You got through 25 months of breastfeeding before that happened. You crushed it.”

What an encouragement I needed to hear.  We made the transition and thankfully it went so smoothly. She only cried a couple times for me, for the most part she was totally fine with taking the bottle over nursing.

I thought our nursing troubles were behind us. I was so wrong.

Less than a week later I realized since I wasn’t nursing her anymore that meant I could eat the food she reacted to. She had gained a couple more allergies after we figured out the dairy, soy and corn. Long story short I hadn’t had eggs in 1.5 years. I ate 2 scrambled eggs and man were they delicious. My joy was short lived. 8 hours later Kae had the exact same symptoms that V got. She was in so much pain and I just knew that once again I had caused it.

What was so wrong with me wanting to eat food? Why were all my kids broken? Did I cause this? Did I somehow mess up and now they had allergies because of it? Why me?

I kept thinking, “Ok. It’s only eggs. No other symptoms. Everything else is fine. We are at baseline otherwise so I can not eat eggs. I can do this again.”

I thought I could hold it together. And then several weeks later she started to get worse. We noticed she reacted to peanuts, then pecans and cashews. Then fish and shellfish. I cut out the top 8 allergens (already gluten, dairy, soy and corn free from before). She was still reacting to something. Everytime I eliminated a suspect she got a little better. And then a day or two later she got worse after eating something else.

I didn’t know what else to do. I had been tracking literally everything that went into my mouth for a month and I couldn’t see a pattern. I tracked every possible symptom. I felt so lost. So I bit the bullet.

I started a TED (Total Elimination Diet). I still felt like I was in control. That I could do this. We would just cut down and figure out maybe one more trigger food and then I could add everything back in. This was 4 weeks ago.

I cut down to chicken, potato, apple, carrot, plum, salt, pepper and olive oil. And by that I mean literally only those whole foods. Nothing else. She got WAY WORSE. So looking at charts we cut chicken and swapped with beef, then cut potato. Slightly better. Then plum. Then raw carrot and apple. We had 4 days of everything looking like she was on the mend. Of looking like it was all worth it. And then the symptoms came back with a vengeance.

I did the only thing I could think of. I went to only beef and salt. For 3 days. I was desperate. She started getting better. We have had a few ups and downs since then, I am now eating beef, rutabaga, salt and coconut oil and I think we are almost at baseline.

Am I ok? Some days.

Am I broken? Every day.

Have I struggled. SO MUCH.

Do I feel like a failure? 100%

Do I feel like a crappy mom? I can’t hide from that feeling.

I cry every day. Multiple times a day. I have lost weight. I eat so much of those few foods in a day it’s disgusting. The amount of fat and oil I need to stop losing weight is obscene.

I feel fat, which obviously isn’t true.

I feel lost and alone.

I know I have friends, but no one else has struggled with this and it is so isolating. How do I talk to people about it without them saying I’ve sacrificed enough. I don’t want to give up. I want to keep going. In the long run this is good because we will find her safe foods. There isn’t even a guarantee that there is a safe formula, and if I lose my milk supply then I will have failed her.

So I keep going. I am struggling every day managing a baby who is obviously not feeling well and a 2 yr old who is craving attention and is incredibly jealous. I struggle with cooking 2+ meals for every meal. Of not being able to taste anything but the most basic foods. I struggle with trying to be happy in the face of depression, something I’ve never dealt with before. I struggle to feel God in these moments, to know he is walking beside me. I struggle because COVID-19 has secluded us from everyone and everything. I struggle because most days I just need a hug from a friend and a phone call just isn’t enough. I am also struggling to admit that it’s ok to struggle. It’s ok to not be ok. It’s ok.

I feel some days like I’m a piece of paper tacked by a nail to a post. Storms keep coming. The rain and wind have shredded me to pieces. I am barely hanging on to that nail. The words on the paper are my identity and the rain has washed away almost all of it. Pieces are missing. But I can’t let go, I have to hold it together for my family.

So where do I go from here? This looks so different for everyone. I guess that’s what this post is about. Everyone’s mothering journey is different. Everyone’s feeding journey is different. Some struggle with post partum depression or anxiety and others don’t ever have to worry about that. Some struggle raising one child. Others struggle raising two or more. Some want a huge family, some want only one child.

It’s time to be honest with yourself. Honest with your friends. Honest with your family. Talk about how you are doing. The good stuff and the bad. Don’t let your fears of them not understanding hold you back. You can’t get help if you don’t ask. You won’t find someone to share your burdens with if you never open up. You won’t find peace in Him if you never give your everything to Him. And for some you may never get the relief you need mentally without assistance from a medication.

So this is me being true to myself. This is me opening up. I’d love to hear about your journeys. I’d love to be a friend, to listen and be there for you. It’s time to be real.

Much love,

From a struggling mom