THE UNEXPECTED GIFTS THAT AUTOIMMUNE DISEASE BROUGHT TO ME.

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The other day I cried while loading the dishwasher.

You are probably thinking, I cry when I have to clean the toilets. It’s called housework, and we all have to do it, so get over your little pitty party and put on your big girl underpants.

Fair enough. But there was a reason I was crying, and it had nothing to do with the actual task at hand and everything to do with what my life had become at that moment. Bent over on a knee scooter, recovering from a second reconstructive foot surgery in four months, unable to walk and losing strength in my arms and hands, I was stuck. The wheel of the scooter was jammed between the dirty tile floor and the open door to the dishwasher, while the bottom rack held a heavy ceramic crock pot which made the rack impossible to slide back into the dishwasher. I couldn’t even close the damn dishwasher without my eight-year-old’s help.

At thirty-nine years old, I felt totally helpless and old and…guilty.

My family didn’t ask for this.

My husband didn’t ask to be the sole provider while driving kids to school, giving them baths, cleaning the house and picking up groceries. He’s like a single parent except he has to pay my medical bills, which we all know aren’t cheap. He didn’t ask to give up vacations because I can’t hike in Oregon and can’t wear flip flops in Carlsbad. He didn’t ask to forego fancy anniversary dinners because I have severe food sensitivities and can only wear sneakers, anyway. No, he didn’t ask for this life, and he couldn’t have imagined it fifteen years ago when he said his vows.

My kids don’t deserve a mom who can’t kick a soccer ball or camp out on the living room floor. They shouldn’t have to hear all the reasons why I can’t take them to the museum or the trampoline park. They deserve better than a mom who screams in agony and frustration when they accidentally hit her elbow with a book. Yeah, a book.

So what does one do when faced with this guilt? I’ve found a few things that help.

1.     Remember it’s not your fault. I repeat, it’s not your fault. You didn’t intentionally make yourself sick. In fact I’d bet a million bucks (or maybe a year’s worth of medical bills) that there isn’t much you wouldn’t do to make yourself well again.

2.     Know that you are deserving of love regardless of your physical condition. Do you love your parents or grandparents any less when they need help opening a jar of sugar-free jam, get cataracts or need a hip replacement? (Note that you are allowed to dislike the sugar-free jam. Artificial sweeteners are crap.)

3.     Put yourself in their shoes. I’ll be honest, I struggle with this one. The kids are easy. I grew up with a mother afflicted by RA. I never resented her or felt slighted. But my husband…well, I never thought of him as having a caretaker’s mentality, and that’s what he has become. Most men are physical by nature, and my man is no exception. They are drawn to the physicality of their mate, and some days my physicality looks like I just walked off the set of The Walking Dead. All I can do is try to fulfill his needs as much as possible and show my appreciation for his loyalty and care of our family.

4.     Think of everything your loved ones have gained. Say what??!! Sounds crazy but it’s true, there are things to be gained. I believe my children are learning empathy and compassion. When my son has to refill my glass of water and my daughter has to retrieve ice packs, they learn to put others’ needs before theirs. Anyone with small children can agree that is not instinctual for most kids.

5.     Embrace the times when you must slow down. My limitations have forced the family to slow down at times. Maybe we didn’t travel the way we had planned this past summer, but we rented a cabin a couple of hours away and were able to unwind. The kids got to play in the creek and get muddy. We went fishing and listened to Pearl Jam. (Typical fishing music, right?) We read books and swung on wooden swings. I’m pretty sure we made a few good memories along the way.

It’s not an easy journey for any of us, but with the right perspective, we can live enjoyable and fulfilling lives with our loved ones.

-Suzy

SUZY

I’ve always enjoyed being in motion, whether it’s playing tennis, running a marathon, hiking the desert trails or mountain biking. Managing multiple autoimmune diseases has forced me reevaluate my definitions of healthy and active. It’s given me a new perspective on medicine, doctors and nutrition.

I am stubborn, though, and refuse to give in to disease. Determined to find the answers, I search each day and have been known to do some CRAZY stuff in the name of healing. And I won’t stop until I win or die trying.

In between those searches, I volunteer at my kids’ schools, read, write, get crafty, bake, organize my Pinterest boards, attack everything in the house with a label maker… What can I say, I get bored easily and need hobbies, lots and lots of them.