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.

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