Living With Lupus

Being a full time mom is a difficult enough job as it is. My job description boils down to project coordinator of laundry, dishes, and the toilet brush (among other household implements); senior accountant of household finances; gourmet chef (specialties include: spaghetti, chicken nuggets, & fish sticks); nurse; and cowgirl (otherwise known as toddler wrangler). Adding a full-time (paying) job to the mix make us less than sane people.

As a writer and a stay-at-home mom, I know I’m as crazy as they come, especially when my idea of finding some quiet work time includes locking myself inside my walk-in closet and hunkering down behind a stack of shoe boxes, praying the kids don’t find me. I willfully ignore the bangs, crashes, and shrieks that echo through the house, knowing full well that the mess will still be there after I finish my article (or at least start it). But add an auto-immune disease into the mix and this ball game just became a battlefield, Game of Thrones style. You fight for every inch of ground you gain.

Lupus is not only a difficult disease to live with, it is also a difficult one to diagnose. I was living with it for five years before I finally received an answer, rather than just perplexed looks, shrugged shoulders, and meaningless platitudes that all boiled down to “sucks to be you.”

For those of you who don’t know what Lupus is, I’ll give you the low down in layman’s terms. Lupus is a disease that starts with your own immune system attacking you. It mistakes healthy cells for stealthy intruders. Because of this skewed perception, your immune system attacks various systems in your body.

For me, the scaly skin rashes, super sunburns, circulation problems, and pesky hair loss are the least of my problems. Though it would be nice to have the long, thick, luxurious hair I used to have. (I chopped mine pixie style, just to hide how thin it had become). Aside from lamenting the loss of my pretty hair, I have bigger fish to fry. And that is just functioning on a daily basis.

Lupus not only causes the minor inconveniences I mentioned above, this wholly unwelcome houseguest lugs with it an entire collection of symptomatic luggage. Joint inflammation and pain, muscle pain, debilitating fatigue, headaches, diminished immunity, and a litany of other possible complications. Lucky me, I drew hearts. That is, heart complications.

In one respect I did get lucky. The type of heart problem I have is pretty much the one you want to have…if you actually have to have a heart problem.

Not that you really get a choice. If I had that option, I would politely say “no thank you” and quickly run the other direction.

Focus, Lindsey. Okay, back to the point.

Basically my complication boils down to my heart beats too fast now, and throws in some extra off beats, just to keep things interesting. If that wasn’t enough to be getting on with, several months ago I developed pericarditis, which means the lining around my heart muscle gets inflamed and irritated. Not particularly dangerous, but it can be pretty painful (if the feeling of someone stabbing you repeatedly in the heart with an icepick can be considered “pretty painful”).

So…yeah, simply functioning on a daily basis has presented quite a challenge, especially being  the work-at-home mom of two rambunctious preschoolers. But, after two and a half years of trial-and-error treatments, hundreds of pills, and several scary ER trips, I have become an expert at coping.

The most important skills to acquire are acceptance and an entirely new way of thinking. I know many people would consider acceptance as just another way of throwing in the towel, but it’s not that at all. Accepting that this disease will be your constant companion for life is an important step to coping. Once you gain acceptance, you can begin to move on and decide how you are going to live your new life. Herein begins the new way of thinking: adjusting you stamina and expectations, swapping a high impact workout for a low impact one, developing a close relationship with sunscreen, and learning how to sleep like a teenager again.

Finally comes the honest conversation with your kids. Tell them enough to make them understand, but not so much that you scare the pants off them (or prompts an overshare with every person that crosses their path). All they really need to understand is that sometimes mom doesn’t feel good and that in order to help her feel better, she needs her children to helpful and on their best behavior. Though they may not always be the perfect little angels you hope they will be, they will try their best to make things easier in their own way.

All in all it is an ongoing journey with plenty of bumps and detours, but with a little help and a lot of patience even a busy mom can manage to cope with this new (if unwelcome) adventure.