Sometimes I get mad

Sometimes I get mad. Actually, that might be an understatement. Sometimes I get downright angry.

You see, I can handle a lot. I’ve had a very happy home life, a very supportive family, have an amazing husband and 2 beautiful children, and I have a job that I adore.

And yet, I’ve been dealt a lot of crap. If you have read My Story, you know that I went undiagnosed with celiac disease for 30 years – On and off for 15 years I had been to various doctors and specialists.

I also went undiagnosed with depression and anxiety for many years, finally getting diagnosed when I was 23. It took another 4 years to get healthy and it’s still a battle. I’m doing amazing thanks to my doctor, my husband, and my support systems, but it’s still there.

Now I may have eosinophilic esophagitis and yet I still feel like I can handle that. It’s a relatively new disease and still being learned about, but that’s ok. (I find out on March 6 if that is in fact what it is. My last scope saw many biopsies being taken and also found rings in my esophogus, symptomatic of EoE.)

What makes me angry is when my children suffer. And my children, they have suffered. They’ve had the usual colds, a few flus, etc. But then they’ve had other stuff. Mr Man had moderate to severe sleep apnea that required surgery at 3 years and 2 months of age. Miss A started to lose her hearing and had 7 ear infections in a 6 month period around 1 year old (including 3 ruptured ear drums) and had her first surgery at 17 months. Most recently, she also was found to have sleep apnea (though mild) and had surgery a few weeks ago. And some of you have already read Her Story and know what she has gone through getting to a diagnosis of Celiac Disease.

But tonight was harder than all of that. Tonight I had to explain to my little almost-6-year-old what an allergic reaction was. Scientifically. I had to talk about histamine and white blood cells and allergens. I had to talk about hives and asthma and throat closings. I had to talk about it all. Why? Because he was itchy. He was scratching the heck out of his back, and when I took off his shirt, I found this:

Hives were on his back, up his neck, behind his ears and on his hairline. They weren’t on his mouth, face or throat thankfully, but he was itchy. So out came the benadryl.

It seems silly now that I’m writing this that I was so riled up, but in all the times that we’ve talked about his allergies openly and with raw emotion, he’s never been so emphatic. Tonight he used the word “hate” as in “Mom, I hate that I have allergies. I hate having an allergic reaction and I hate feeling like this.” It took everything in me not to burst into tears at that moment. I understand his feelings. I understand the hatred he feels for his allergies. I understand that at almost 6, he kind of gets it. I understand that he’s seen me with hives and he knows that chances are, this is going to be some part of his life for a long time.

We tried to narrow down what the reaction might have been from but we didn’t have much luck. He ate nothing suspect. He played outside in fresh snow where snow mold isn’t present yet. The only thing I can think of that was different is that he went to a museum today. But the reaction came 2 hours after he got home from the museum. We’re drawing a blank.

So tonight I feel more angry than usual. He’s sleeping now. I sang him to sleep using some of his favourite hymns because for Mr Man, that’s what calms him. But my heart breaks for him, and for the conversations like this that are sure to come again.

If anyone has words of advice, please share. My usual positivity is sparse tonight and I could use some good happy guidance.

Her Story

After yesterday’s story about me, I feel like it’s senseable to share my daughter’s story.

Miss A was born after a daunting 44 hour labour. A week late, 5+ hours of pushing, a little help from my friends forceps and vacuum, she was my victory baby. She was my VBAC; my success; my proof to myself that I could do it. She was everything I could have dreamed she’d be. And she was a healthy 8 pounds 4 ounce bundle of beauty. She was bruised and bloody at birth, and I thought she was the most spectacular being in existence.

She stayed plump. Okay, I’ll be honest. She was downright huge. She was consistently in the 85% for weight. She was a breastfed, contented baby that seriously thrived in every sense of the word. And then, at 5 months, she got RSV. Looking back, I think that’s what triggered her celiac into full blown hell, but of course, that’s speculation. She changed after that and began being more fussy. I hadn’t been able to have any caffeine after she was born because the moment I took a sip, she’d be screaming after the next nursing, so I cut it out completely. But other than that, it was free reign for me on foods.

At 6 months, we tried solids. She had zero interest in any food and was fairly determined not to eat anything other than breastmilk. We tried again at 7, 8, 9 months and still she showed no consistent interest. She’d “eat” now and again, but never anything substantial. Around 9 months of age I took her to a naturopath and said that I was fairly convinced that she was reacting to dairy and wheat. He said that he thought her stomach was just immature.

At her one year appointment, when she was a hearty 22 pounds 7 ounces, her pediatrician also didn’t show much concern given her beefy stance. What *I* knew what that all that beefiness was from my calorie rich milk, and not from any sort of food. In fact, Miss A would spontaneously vomit after eating and we couldn’t link it to anything in specific. It didn’t happen all the time, but seemingly rather randomly.

When Miss A was 14 months, I was diagnosed as celiac, but by that time, she was living on a meager diet of breast milk, toast (wheat), cheese (dairy), yogurt (dairy), and crackers (wheat). Over the next while she stopped gaining weight. Completely. When I say that I literally mean that she flatlined on the growth chart. At 2 years, she was 22 pounds 7 ounces – the EXACT same weight she had been a year earlier.

Finally, after 16 nmonths of me saying something was wrong, others started to think it (my husband included, though he had come on board the “something is wrong” train before her 2 year appointment). She was labelled failure to thrive. She was doughy – had no muscle tone at all. She was skinny in comparison. She had no hair still. Her fingernails weren’t growing. She was lethargic and slept a lot. She’d run with the other kids then have to sit on a trusted adult to rest before being able to go again. Still through it all, she laughed, smiled a lot, and lit up any room she walked in to.

We started running tests. She had chest xrays (her heart and lungs were fine); she had a plethora of blood tests (some came back fine, some came back borderline); she went through 2 sweat tests to test for Cystic Fibrosis – both came back borderline positive so they ran genetic tests which confirmed she did NOT have CF. She had more blood tests. Nothing was pointing to anything but one thing was for sure – now everyone was worried. This was a very sick little girl.

I consulted another naturopath for guidance. At this point, we were dirt poor – not from medical expenses, but from me being a stay at home mom while my husband finished his phd. We couldn’t afford natural therapies but our naturopath was mindblowingly amazing. She charged us exactly what we would get back from the insurance company so we weren’t out of pocket. And strangers heard about our plight on a message board and sent us money to cover her tests. So test we did. A finger prick test that ran a gamut of food related sensitivities.

It came back glaringly obvious that little Miss A had some serious food issues. Gluten and dairy were out. Soy and eggs too. And garlic. So we cut it all out. It was extremely difficult given what she was currently eating, but we were determined. Nothing had worked so far, so really, what did we have to lose? Through it all, I kept nursing – we were fairly certain it was what was keeping Miss A from getting sicker given she was absorbing many of those nutrients.

After a month of being on a dairy-gluten-soy-egg-free diet, we went to get her weighed. Actually, my husband went. I couldn’t bring myself to go. And she gained weight. She gained about 6 ounces, but given she hadn’t gained in 14 months, this was mindblowing. I sobbed for a long time – Our hard work had paid off. She continued to gain slowly but steadily and now at 4, she’s just over 30 pounds.

We were sent to a pediatric GI who said that we were obviously extremely dedicated parents, and that while she couldn’t confirm this controversial test had provided some answers, she certainly couldn’t argue with the outcome. We were getting our little girl back – she was starting to grow and her energy level was picking up. The GI suggested we treat her as celiac and not bother to scope her – We readily agreed.

Since then, Miss A hasn’t eaten gluten. She has very minimal amounts of daiy – she can tolerate it more now, but anything over 2 pieces of cheese has her hurting. At 4, she already knows her own limits. We both avoid soy still, but she can now eat eggs (which I’m going to say has been VERY nice for baking). Her hair is growing, we have to cut her nails regularly, and though she’s still little, she’s not obviously tiny anymore. She’s happy, VERY feisty and amazing. And she’s her own little advocate telling everyone she can’t have wheat or gluten and asking if she’s not sure what something is.

What I learned from all of this? ALWAYS trust your gut instinct when it comes to your kids.

My Story

I’m guessing some people won’t like my blog because of how I write. I write basically exactly how I would speak. I’m not the kind of blogger that goes back and edits and re-edits their posts before hitting that daunting “Publish” button. I find typos. I go back and read things and think “hey, that was one well-written post” and others I think “why in hell did I press go”.. who knows what I will look back on today’s post as given I’m still in a gluten-induced-fog.

So why I’m picking today to tell my story, I’m not sure. But, it seemed as good a day as any, and I think that the more stories out there, the better.

All my life, I was always what I would describe as “unwell”. I got sick often – bronchitis, colds, weird viruses. Through all of it, I consistently had stomach issues. I’d feel like I was going to throw up. Or have to run to the bathroom; or both. I never felt great. I always wondered if I’d make it to the fun events or would my “bad stomach” interfere and land me in bed. I slept a lot; I still do. I got brutal headaches, I suffered from undiagnosed depression and anxiety, I was constantly exhausted and no one knew why.

Most people thought I was a hypocondriac, or a wuss, or both. Mostly, no one believed me when I said that I just wasn’t right. My parents knew something was wrong, but doctor after doctor kept saying I was okay. I was tested for everything and diagnosed with random things. It honestly was a little bit hellish. It had a huge impact on my childhood and my teenage years.

In my years of seeing doctors, I also saw 2 gastrointerologists.. none diagnosed me.

And then one day, after the birth of my second child, I read a magazine article. I felt like this giant light bulb went off in my head. I showed it to my husband and asked him why someone wrote about me without interviewing me. I called my doctor and made an appointment.

I told my doctor that I wanted a blood test for celiac because I read an article and it sounded like me. He seemed skeptical at first, asking me my symptoms and why I would think I had celiac. He agreed that a blood test would at least rule it out so why not. Then I put off going for the test for 3 weeks. I was convinced it would come back positive, and I was scared.

I went for the test. A couple of weeks later I was called back into the office to discuss my results. My doctor said “So, your test came back and we definitely need to refer you to a specialist.” I said: “So signs point to celiac?” and he said “Well, normal levels are 7-10. Your are 1360.” I think if I was prone to fainting, I probably would have fainted then. But I didn’t, instead, I think I did an inner dance. It was like validation. Years of an inner fight that had finally been won. I had celiac disease. There was a NAME for my issues!

I went for a scope less than 2 weeks later and my disease was staged at 30 years along. I was 30 years old at the time of the scope. I had significant damage that would take a long time to heal. But I could heal. I could get better and finally lead a normal life. I could eat like a regular person (sort of..), and not worry about my “bad stomach”. (I should interject that I was so scared of not feeling well that at my own wedding I had rice for supper while everyone else dined).

I went gluten free right after and I’ve never looked back. I’ve had ups and I’ve had many many downs. I’ve gone through rather extensive learning curves. I’ve had some horrific failures in the kitchen that I would rather forget about. But I’ve also had some amazing successes, like the
Fudge puddles in the GF Cookie Swap on Facebook.

But best of all, I’m healthy. It’s something I always took for granted.. always feeling slightly off, and thinking that was normal. Don’t settle. Always strive for more.

Maybe tomorrow I’ll post about my daughter’s story. She’s celiac too, and at 4, she knows what gluten and wheat are, and how to tell others that she can’t have them. Pretty amazing.

The Cake

I meant to post a picture of the Boy’s cake. A GF cake (Glutino white cake) in which I added white chocolate chips and some lemon zest. I made the icing myself, and the spikes are white chocolate dyed orange hand done by me too. He loved it!

Gluten Free Menu Swap

It happened. The Boy turned 3. I’m not sure how three years have already gone by but they have. And, just like 3 years ago, this weekend was filled with a snowstorm. Oh how I love living in Canada sometimes.. this time we’re only supposed to get 20cm or so, but still. It’s nearly the end of March.

Anyway, this is my first time participating officially in the Gluten Free Menu Swap, hosted by Weird and Suprisingly Good. Her theme for the week is Latin food but I went to my cupboard and thought our theme should be “food you already have in the house” so I scrapped Latin and went with my own. And, I might add, that the only things we need to purchase for this week’s menu are: a bag of spinach and some mozzarella. Everything else we have in the house.

So here we go:

Pork Tenderloin with Maple sauce, rice (leftovers), carrots and peas – we had this tonight and it was fab. I kept dipping into the maple sauce. Mmm. The Husband = very good cook.

Brown Rice Tinkyada Spaghetti with Pasta Sauce already made in the freezer.

Moose Meatloaf with peas and potatoes – we’ve had this moose meat in the freezer for a long time and seriously need to use it up. If I don’t have enough, I’ll combine it with some ground beef.

Pizza (Pamela’s crust) with onions, leftover meat, and whatever else we have in the frige.

Spinach Garlic Soup as a starter followed by leftovers.

Artichoke Pork with Broccoli and Rice or Potato

And finally.. leftovers 🙂 We have to have at least 1-2 nights of them or else we waste food which is not the point of menu planning.

My surgery is on Friday so I’m guessing that leftovers will be Friday/Saturday this week.

Memories of Three Years

It’s as though a tidal wave is overcoming me today. The Boy turned 3 today. He’s now a “Big Boy” (even with potty training issues he’s still a boy now, no longer a toddler). I can’t believe how much life has changed in three years and how much I’ve gone through personally.

Three years ago yesterday I went into labour 4 weeks early with a baby who was breech, feet down. Three years ago early this morning I had a cesarean to remove said baby. Three years ago this morning The Boy was transferred to a different hospital without me because he wasn’t doing very well. He had been recusitated and couldn’t keep his own oxygen levels up. Three years ago this evening I was finally transferred to the same hospital after the head nurses at the 2 hospitals went behind the doctor’s back and transferred me. Three years ago tomorrow my baby came to live with us in my room after being released from Intensive Care. Three years ago tomorrow I fell in love with a new man and three years later I still feel that love and can’t remember life before him as being much fun.

I went through post partum depression, surgery recovery and more after that day, and yet still, I wouldn’t change a thing. The Boy is challenging every day and yet each day, I laugh out loud at least a dozen times by his actions and words. That kid cracks me up. Like tonight when he told his Grandma that he got lots of tiny presents.

It’s the day of 3s here.. 3 months ago I started my new diet and 3 months later, I feel amazing. I almost never have sour stomach anymore, I’m pain-free, and my digestive system might actually be working. It’s been amazing this diagnosis.. I can’t even imagine what the next 3 months, years and further have in store..

Beauty in Sleep

I adore my kids. Without sounding like a bad mom – I love them when they’re sleeping. (I love them loads when they’re awake but..) There’s something so peaceful and beautiful about a sleeping child that you just don’t get until they’re asleep. Their lips, their cheeks, their hair all over the place.. I could sit and watch my children sleep for hours (and sometimes I do).

The Boy last night had a hard time going to sleep. Something is going on with him and I’m not sure what it is. I’m not sure if he’s cognitively growing given he’ll be 3 in 2 months, or if physically something is off. He’s battled strep throat and a throat infection and an ear infection all in the last 2 months, so I’m sure there’s some healing going on. But anyway, I went up to check on him as I told him he would and I asked him why he was still awake. His response? “I don’t understand why I’m not aslsep mom. I think it’s because I’m still little sometimes.” I didn’t know whether to laugh or cry. The Boy IS still little and I forget that sometimes. It’s nice to be reminded.

I held him in my arms and cuddled him, rocking back and forth shushing as I did for so many hours when he was an infant. I nearly started weeping as all of the memories came rushing back. My boy still loves a good cuddle and for that, I am so thankful. The Husband went in and read him some stories and the Boy fell asleep promptly (isn’t that always the way..). I went in and watched him for a couple of moments before bed (and listened to the sound of the motors coming out of my child’s mouth.. the snore is a pretty good indicator that something’s up I think). Smiling, I headed off to sleep myself.

As an aside – the cake was amazing. I added some coconut to it. The Husband wasn’t sure he liked the coconut in it, but the rest of us loved it!

And, the kids are being tested next week for celiac. We get the req on tuesday so it’ll be off for the blood test shortly after that.