Monday, July 1, 2013

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.

Operation Vacation

Flip-flops…check (as I extract the lone one from under the bed). Several changes of clothes (plus a few extra choices)…check. Sunscreen…where the heck is the sunscreen. Dammit, over 3oz. Guess I won’t be taking that on the plane, I think to myself as I chuck it into the reject pile.  Packing yourself for a well deserved vacation can be overwhelming at the best of times, but throw kids into the mix and your sanity can unravel faster than a roll of toilet paper with a three-year old at the other end.

Our family spends as much time as possible at the family lake house in the Cascade Mountains during the summer, but ever since we moved from Seattle to New York, our nearly every weekend trips have dwindled to one, big ten-day trip. Managing a bicoastal trip involves a lot of packing and unpacking and repacking. With a four-year old and a three-year old, preparations can start to seem like a monumental task. For some reason, when it comes to those adorable hard-side, 18 inch spinners decked out in Hello Kitty or Cars designs, my kids would rather forgo the clothes and opt for their suitcases being stuffed to bursting with cars, trains, dollies, and stuffies. I spend more time chasing after the little suitcase absconders trailing infrequent heaps of previously neatly folded outfits, than I actually spend packing.

I guess by now, I should probably learn to fold and pack all their clothes the night before we leave, but with last minute laundry loads, injured stuffies and ripped blankies that need emergency surgery, and the all important tasks of making sure the dishwasher is clean and all the garbage is out of the house (too avoid full on olfactory assault upon our return), I have no time left for stealthy nighttime packing subterfuge.

Airline ticket app and kid friendly ebooks and games downloaded, bags loaded, blankies and portable movie players packed in brightly colored backpacks sporting my kids’ favorite Disney characters, and mom and Dad running on about four hours of sleep, we plunge headlong into the melee of New York’s JFK airport. As we make it through security (thankfully without any meltdowns or pat-downs) we head to our departure gate, only to find that the previous flight is delayed, so our flight is in limbo for the foreseeable future. Tired, whiny kids in tow who, not only want us to carry all their stuff, but want us to carry them as well, we grab some breakfast and take a load off while my husband compulsively checks his JetBlue app for status updates. Forty-five minutes before our scheduled takeoff time, the app tells us that our gate has been changed to one on the opposite end of the terminal. Swell.

Schlepping our own carryon as well as the kids’ we start the arduous trek to our new gate. All I can say is, thank goodness for early boarding for travelers with small children. We jump the line and get settled on the plane, snagging prime spots for our carryon in the overhead bins, and immediately unpack stuffies and blankies to placate our increasingly grumpy children. As soon as the seats around us begin to fill, my kids snap out of their doldrums and fly to the other end of the spectrum…hyper. Groan. They excitedly babble, to anyone who will listen, their plans for this trip and begin their childish interrogation of their fellow passengers. I breathe a sigh of relief and a silent prayer of thanks for the tolerance and kind indulgence of the people seated around us and settle in for a mercifully uneventful flight.

Touchdown. We have arrived and I realize how stressed I am, as I shrug the tension from my shoulders and actually begin to enjoy the true beginning of our vacation. Camping, swimming, sun, family, and s’mores here we come. Viva la family vacation!