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

Allergies and Mental Health

Did you know that people can get PTSD due to allergic reactions?

Did you know that young kids with allergies often REFUSE to eat new foods for fear of an allergic reaction causing the to become picky eaters and at a risk for malnutrition?

So this post is for all those that have stood in the grocery store and sobbed because you can’t find anything for your family to eat that is safe.

For those that are stressed about money because your grocery bill skyrocketed since allergies were diagnosed.

For those that feel like you never leave the kitchen because you have to make everything from scratch to ensure it is safe for your family.

For those that stay at home instead of going out for dinner at a restaurant, because the thought of eating there or having your kid eat there and react makes you have a panic attack.

For those that stress every time their kid is playing anywhere that isn’t at home, wondering if someone ate something recently that your kid is allergic to…what did they touch? Will you be judged for wiping down everything in the area? What is too much? And then wondering if it might better to just stay home.

For those who decline invites to friends houses because you don’t know how well they clean and you don’t want to offend them by requesting they clean everything first.

For those who want to get frustrated with toddlers who aren’t eating in a high chair and are running/crawling around with their food; everything they are touching is now contaminated and a risk for your child or you. (Trust me I’ve been guilty of this too).

For those who try to act all cool in public but inside you are panicking about everything.

For those that carry an epi pen at all times because you never know when you might need it and the thought of being without causes you to break out in sweats.

For those who panic about trying new foods or starting new trials for ingredients, unsure what the reaction will be.

For those who constantly run through what to do for an anaphylactic response because you are worried you will miss something important.

For those that hear an ambulance and cringe inside, having flashbacks and reliving of previous reactions and the terror it causes.

For those that second guess everything, wondering if something could be related to an allergic reaction or if it’s in your head. Is that a rash, hives, a bug bite or a scrape?

For those that can’t go out in public without wearing an N99 mask because you are airborne reactive to many foods.

For those that are harassed at work or disrespected due to allergies meaning you no longer have a safe work environment.

For those who have to pay an arm and a leg to get medications compounded specially so that they are safe for you to take.

For those that are told that your baby can’t react to food through your breastmilk, to just eat whatever you want but your baby is in pain and screaming, so what else could it be.

To those who religiously check ingredients and stress about what’s in their food.

To those who have misread, or don’t reread a label and have such guilt for feeding their child something that could have killed them.

For those who have nightmares of accidentally killing their child by improperly checking ingredients.

For those that have family that doesn’t respect your boundaries you have put up to protect you or your family and put you at risk, causing you to feel unheard, alone and always in fear.

For those that don’t have a supportive spouse or significant other, to not have someone else looking out for you.

What many may not know or understand is how much allergies can affect ones mental health. I sure didn’t. I thought I understood as I discovered my allergies to gluten and dairy while in highschool and I thought it was the worst imaginable diagnosis.

I didn’t truly understand until my daughter was diagnosed at 3 months of age. I spent so many nights holding a screaming baby and bawling. I would go to the grocery store and sob over my empty shopping cart because my normal staples we couldn’t eat anymore and I had to start from scratch.

Allergies are debilitating. They can cause stress, anxiety, can break relationships, cause self doubt or fear, financial difficulty and everything that goes along with it.

For those on this journey, I am here, we all are. We understand. Find a support group of others with a similar allergy. Share your fears, share your tips or foods that you have discovered. Get medical help if you feel you have anxiety, depression, PTSD or any other mental health issues that are damaging to you, your family or is putting your health at risk. The treatment may look like medication, or it may not, but don’t be scared to get help.

To others, advocate for change, support your loved ones, try to learn about others allergies, what you can do to make it easier for them. Make a change in your office if a coworker is feeling unsafe due to their food allergies. Don’t wear strong perfumes or scents as it is disrespectful to others around you. Put out a teal pumpkin and have non food treats during Halloween. Don’t be offended if someone asks you to not eat something near them or to wash your hands after you eat, and if you do wash your hands, please wash them properly, not just tinkle them under some water.

All this to say that allergies are so incredibly complex and difficult. Let’s build each other up and create supportive environments for everyone.

If I missed anything or have a story to share, please comment. I would love to hear from you.

Weddings & Maple Baked Beans

The best part of weddings is the free food. Except for families with allergies.

My brother had his wedding reception this past weekend and they ended up having a potluck dinner, which made it easier to ensure there was food we could eat as we just brought our own, but there are always risks with food around others when you have allergies.

It has become second nature to always bring food to events that we can eat, because if I can’t eat, I will get hangry, which is not what anyone wants.

We made my family’s maple baked beans recipe which we almost ran out of (we made 70 servings). It is so good, and easy to make allergy friendly, especially if you have made my ketchup recipe.

Maple Baked Beans

  • Servings: 10-12
  • Difficulty: easy
  • Print

Ingredients

1 lb dry navy beans *
4 quarts water, divided
6 slices bacon, cut up
1 medium onion, chopped
1 cup maple syrup
1/2 cup ketchup
1/4 cup barbeque sauce (I used my ketchup)
5 tsp apple cider vinegar
1 tsp prepared mustard**
1 tsp salt
1/2 tsp ground pepper

Directions

  1. Rinse beans and put in large pot with 2 quarts of water
  2. Bring to a boil, reduce and simmer for 2 min. Remove from heat, cover and let stand for 1 hour
  3. Drain and rinse, put back in pot and cover with remaining water.
  4. Boil, reduce heat and simmer for 40 min or until almost tender.
  5. Drain and reserve water.
  6. For oven: Place beans in casserole dish and add all remaining ingredients. Bake, covered, at 300 degrees F for 2.5 hrs or until tender, stirring occasionally and adding reserved bean liquid as needed. For Crock-Pot: Place beans in Crock-Pot, add remaining ingredients and cook on low for 8 hrs

*I use a mix of black eyed peas, navy beans, black beans, and kidney beans

**If corn free, make sure your mustard doesn’t use white vinegar. The one I use has apple cider vinegar

So what makes weddings difficult for this with allergies? What’s the big deal?

First, who is making the food?

a) Is it a potluck, where everyone brings their own food; usually people have no concept of cross contamination or even fully understanding what is in their dish. Never ever trust someone’s word that it is free of certain ingredients. Do you know how many times I have had kitchen staff in restaurants try to convince me that butter isn’t dairy? Too many to count. No one knows your allergies like you do.

b) Is it a catered meal? If so, don’t just ask for what is (dairy, soy gluten etc.) free, because they don’t always make everything nor do they take additional training in understanding allergies. I always have to ask about each individual dish and it’s ingredients. Too many times do they forget that they put butter in the vegetables or milk in the mash potatoes until specifically asked about it.

Second, are your allergies anaphylactic?

What many people, even those with allergies, don’t understand is that any allergy can become anaphylactic at any time. Previous reactions are not indicative of what future allergic reactions will look like.

So if you are very concerned, or know for sure you have a serious allergy, check how they are preparing everything. Do they have your allergens anywhere near the food you are eating during prep in the back? Do they have a designated area they can prep your meals. Is there a way that they notify staff that your plate is separate or different (a coloured toothpick for example).

Third, how is the meal served?

a) Is it family style so you will serve your own food at your individual table? If that’s the case, make sure everyone at your table understands your allergies, that they can’t use anything other than the serving spoon in that specific dish, also ensure that said spoon doesn’t touch anything on their plate when they are serving yourself. Or maybe you need to go first and not have any seconds.

b) Is it buffet? Maybe you could check with staff and go through first, as everything will be cross contaminated by the time you go through the line. Or you could check with the servers about if they can dish you up a separate plate so you know that it is safe.

Lastly, do you trust people to wash their hands after they have eaten? Usually this isn’t a big deal for adults as those with allergies know to always wash their own hands prior to eating. This is a big deal if you have a toddler or newborn that still sucks on their hands. I have to watch to make sure people don’t touch my daughter V if they haven’t washed their hands, and kissing, even if it isn’t on the face, is forbidden unless you have washed your mouth.

Many may think this is ridiculous but we have had V break out in hives locally where J has kissed her after eating an allergen of hers.

Have you or any of your loved ones ever had difficulties at weddings or eating out? Please share! And if you have any new ideas or tips on what to look out for with food allergies, please comment.

All of this to say, we had such a great time at the wedding, but as an allergy mom I never truly relax.

A Start… of something

I once had a blog that I started when I was 18 to just have a place to keep track of recipes. I had several years before discovered I had allergies to gluten and dairy and I wanted a place to share. As is very common, I stopped after a year because life was busy, and no one really read it except for me.

So when some friends told me recently I should start my own blog, sell my own cookbook, actually sell my own flour mixes, my gut reaction was, NO, that’s a lot of work. You may be thinking, what changed my mind?

My daughter did. My daughter changed my mind completely. We have had many struggles, as any new parent has, however, our situation has been a bit more unique. We had a textbook perfect pregnancy, so when did things start to change? 2 days after our daughter was born we got sent to the NICU (a story for another time) and later got diagnosed with a congenital condition called Incontinentia Pigmenti.

Our journey didn’t just end there. At 3 weeks she started having some blood in her bowels, by 3 months it was concerning and the doctors finally diagnosed her with Cows Milk Protein Allergy (CMPA) and Soy protein allergy. Since then there have been additional allergies discovered including corn and egg.

So. Why a blog? I have always enjoyed making my own food, mostly because allergy friendly pre-made food is ridiculously expensive. Everyone keeps asking me for my recipes, how I make my food taste so good. I even had one friend tell me she doesn’t like desserts, but she will gladly eat anything I make. So I wanted to share with you what I do, the recipes I have, and the tricks I have learned.

It isn’t just this though. On this journey I have come to the realization that I have so much more to learn about allergies, and what better way to go about this than to share as I learn. I want our friends and family to understand the struggles of an allergen free home, of what to expect when we are out in public, and how to ensure that you and your kids are creating an environment safe for others with allergies.

Did you know that babies can react to allergens through their mothers breastmilk? I sure didn’t. Anything I eat that V (my daughter) is allergic to passes through my milk and she has a reaction. Usually little ones can’t have an anaphylactic response from this exposure, but it makes it no less serious.

Did you know that labeling on packages isn’t always accurate in the “allergen” section? For example, “caramel coloring or flavoring” usually contains dairy or wheat, but companies aren’t required to state that on the package. I learned this the hard way when balsamic vinegar in a greek salad that I was eating was causing V to be in excruciating pain for over a week, all because it had caramel coloring in the ingredients.

I wish that there weren’t others out there like our family, who have had to struggle with finding information on food allergies or other medical conditions. There are varying opinions, everyone’s situation is different, packaging and labeling is in no way accurate or always reliable. I often have to contact companies myself to discover whether their food is safe for our family.

It’s also not easy deciding as a family when someone is diagnosed with an allergy how far you take it. Do you eliminate those allergens from your home completely or do you try to create safe zones, and what that may look like for each family is different as well.

So, I invite you to journey with us, to learn as we learn, and to grow in ways you never expected. My life has changed dramatically since I became a mom and I wouldn’t change it for the world.

If you have any specific requests on what you want to learn, or specific recipes, feel free to contact me and I’ll see what I can do. I’m hoping that we can all come together and make the world a safer, more inclusive place for everyone, but especially for our little ones.