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!

Temper Tantrums

There is nothing more frustrating, embarrassing – and yes – amusing about witnessing the core meltdown of a toddler, especially if the toddler in question belongs to you. However, as disheartening and emotionally trying as a toddler tantrum can be, sometimes they’re not the only ones who need to release stress by some good old-fashioned kicking and screaming. Even moms succumb to their baser instincts and just let fly whatever frustrations, stresses, or general craziness are upsetting their apple cart.

 As moms we hold ourselves up to incredible standards to be the perfect motherly specimen (the UberMom). We see the images of SuperMom on television, in movies, and in commercials; we strive to live up to the images of June Cleaver, Heidi Klum, and Martha Stewart all rolled into one. We push ourselves to be successful, attractive, fashion forward, creative, and the mom who makes sack lunches, heads up the PTA, creates fun and interesting art projects to fill the rainy days, and lays lavish home-cooked meals on the table every night of the week. No wonder the veneer begins to crack every now and again. We’ve packed so many must haves into our personality that we are bursting at the seams.

I am completely guilty of buying into the SuperMom image. I have accumulated numerous infractions, violations, and downright felonies of that SuperMom code of conduct. And yes – that includes temper tantrums. I have lost my inner SuperMom more times than I wish to admit. When surrounded with toilets overflowing with an entire roll of toilet paper, dry-erase crayon pictures decorating the carpet (courtesy of my daughter), all of my clothes & shoes cascading out of my closet and dresser, the dog marking the furniture, the kids screaming bloody murder at each other over who gets to rip the pages out of books or shred the resident holiday decorations and my sweet little boy pulling handfuls of flour and sugar out of the canisters so he can make it “snow”, I have been pushed so far to the edge that my inner self is screaming at me (over my yelling) to just throw myself on the nearest available surface and kick and scream and pound my fists, then get up and start flinging things around the room with all my might, until I feel better. And that, ladies and gentlemen, is a mom sized tantrum. Kids have nothing on mom when she’s about to blow.

The good thing about being an adult (and the bad) is that you have the presence of mind to suppress the all-out rage and destruction part. Dammit. The thing that I have learned through the numerous encounters with my inner toddler is that that frustration and craving for a good old-fashioned kick & scream is completely healthy and normal. We need that release in one way or another.

My way is to write about it. That is, if the kids leave me alone long enough to fire up my laptop, let alone type actual words. However, when time and toddlers are not so obliging, a quick trip upstairs to my bedroom where I quickly lock the door and throw myself face first on to the bed to let out one, good, throat rattling scream, usually suffices until a little quiet time is actually attainable. When all else fails, a little wine can become mom’s best friend. Don’t look at me that way, you know it’s true.

 

So for those of you moms (or dads) aspiring to SuperMom (or SuperDad) status, failure is not only an option, it’s practically a job requirement. No one is perfect, and trying to be the perfect parent only adds to the pressure of simply trying to be a good parent. So give yourself a break and accept that you’ll never be perfect, and that your kids actually don’t want perfect. They just want you.

The Real Imaginary Writer

Writing, to me, has always been about the art of creation, the imagination, and sheer enjoyment of putting an idea or story down on paper and giving it life. It has been a tangible way for me to have ultimate control in a life that seems very out of control. I make a million small decisions in the stories that I write that completely dictate the outcome of the characters I create. Do I let them live, or kill them off? Do they fall in love, or fall short? Do they succeed, or do they fail? But writing has ever only been an enjoyable hobby. I have implacably refused to become a professional writer. I always believed that writing for a living would take the joy out of the art. However, I should, by now, know better than to use words like never or always.

No matter how emphatic my high minded beliefs were, they would ultimately give way to the practicality of convenience and the necessity of ingenuity. As Plato wrote, "necessity is the mother of invention."  Now necessity has driven me to put the tools that I was given to good and practical use. Being in the great city of New York, where opportunity abounds and stiff competition follows hard on its heels, has given me the rough awakening and, consequently, the determination I needed to simply close my eyes and jump straight into a writing career. With something of a diverse job history, writing has been my only constant. Thus, the Real Imaginary Writer was born.

I chose the moniker Real Imaginary Writer, because writing has always been a hobby and a joy, so writing as a profession doesn't seem like a real job. I only half jokingly call it my real fake job. Where else can I get up in the morning, walk downstairs to my kitchen and make my tea, then go to work in my pajamas, where I make stuff up and write stories about whatever I want? No wonder this doesn't feel like a job for a grown-up. Even though I feel like I don't have a real job, at the same time I sincerely hope that that feeling never changes.

My Favorite Time of Day

Nighttime is my favorite time of day. Even though I am tired from the strains of the day, I seem to come alive at night. My brain is filled with places and people and stories that are scrambling to get out. They whirl around my head like a brightly light ballroom swirling with gaily clad figures, spinning and twisting to the time of the music. I guess that’s what makes me the serial insomniac that I have been for many years now. I have more creativity spinning around my brain during those few hours of attempts at sleep, than I do in the whole of the preceding day. Sometimes the only cure for that is putting pen to paper (so to speak) and getting the ideas out of my head for good. I always seem to be more at peace when I write.

This, in itself, is an amazing concept, because I seem to avoid writing more often than I give in to it. I write to get my mind off the swirling of ideas, not, necessarily, to give voice to them. I have so many ideas for books and stories stuffed in the attic of my mind, that I barely have room for it all. Rather than purge the superfluous ideas, I hoard them. Like a pirate hiding pilfered treasure, I store mine up for the seemingly inevitable day that I will need them. I don’t use it, or spend it, I simply save it like a scholarly Silas Marner.

I’m afraid. I believe it is as simple as that. I am afraid that nothing I commit to paper will ever be as stunningly imaginative as it was in my head. I fear throwing effort after foolishness, in indulging in the fantasy that my book will be complete, published, and revered. I am loath to spend large quantities of time on a project that may never extend farther than my desktop printer. Yet, I am at peace when I write. Therein lies my predicament.

Just Do It Already

I’ve been writing a book for nearly ten years now and there always seems to be something that prevents me from finishing it. I am not your typical writer. I can’t just write for a specified length of time without making any corrections. I make the corrections as they come up. I think that tends to seriously slow my process. I also think the other, much stronger aspect of my writing paralysis is the fear of success. I never wanted writing to become my job. I loved it too much to have it change from a pure expression of myself into something forced and unworthy. I didn’t want the pressure of producing something to eclipse the work itself.

Instead I dreamed of my book in print, of being an author full time, and of having a study/library where I would sit behind my large mahogany writers desk, surrounded by walls of books, facing a window overlooking a tranquil view of the ocean and produce my next masterpiece. A nice dream, but hardly realistic…and a complete waste of time. Nevertheless, I continued to daydream my life away and wish my book into successful existence, paralyzed by procrastination and not really producing anything that forwarded this lofty ambition. Oh sure, I dabbled. Writing a paragraph here, an outline there, but nothing that really made much of a difference. More to the point, it was just the opposite of that. My playacting at being a writer made me revise and rewrite sections of completed work in an, as yet, unfinished story. My story was barely started and already I was rewriting its history. I know now that I would be much better served to complete an imperfect story, than to continue to pick at parts better left alone.

So now I begin afresh, with a new outlook on my writing adventure. I have found that writing is just like physical exercise, it needs to be performed regularly to have any effect. Even if I don’t work on my book every day, at least the act of writing on a regular basis, on any subject, will put me on the path to becoming a much more effective and consistent writer. This blog is a good way for me to exercise and express without the pressure of production. Writing is a gift and a calling, if you don’t use the tools and inspiration you are given, they abandon you and leave only regret in their wake. For anyone who has ever wanted to write, but been too afraid to put proverbial pen to paper, just do it. What have you got to lose? Learn from my mistakes and don’t waste another day wishing your imagination into physical creation. It doesn’t matter whether you are good or not, what matters is the doing. Find a way to express yourself for you and no one else. Just close your eyes, grit your teeth, and write.

I write to be Myself

I never really thought of myself as an interesting person. Sure, I think interesting thoughts and like interesting things, but I'm not a person with a particularly dynamic life. I've lived most of my life in the same small town in Western Washington, never been out of the country (except for Mexico on a church trip when I was 15) and have only visited about 7 states, most of which don't even cross east of the Rockies. But here I am, a recent resident of New York with no job, no friends, and little to do except impatiently wait for my life to change.

I always loved writing. It was a way for me to get out all the things I wanted to say, but didn’t really know how to convey in so many spoken words. More often than not, I would find myself tongue tied and stammering, whenever I tried to speak my mind, or else, much worse, I would try desperately to talk myself out of a corner I had only moments ago talked myself into. However, writing allows me to be witty, charming or cutting without the added pressure of performance anxiety.  So here I am, a recent New York transplant who has nothing better to do besides writing down anything and everything that comes to mind.

I was born in Washington, lived there, went to college there, met my husband and got married there, and had my kids there. My entire family lives in Washington, as well as all of my husband’s family. So, leaving all of that heritage, memories, and support system behind was not really a choice; it was more like an anti-choice. My husband’s career path steered us ruthlessly toward New York. There, was the only place that his career could go, if not, it would just become stagnant and evanescent. There was no choice. Either I go, or I damn his dreams. That is not a choice, it is an undeniable force that mercilessly and unceremoniously dumps you onto a path, already moving forward. Your only choice is to stand up and meet the horizon head up and head on, or lie down and let the road drag you perpetually onward.

I’m not going to lie, there was, for a time, dark hours in which I was willing to lie there as the path I was on, dragged me along. With two small children and two rapidly growing Labrador puppies, plopped down in a two bedroom corporate apartment, with unfamiliar and starkly impersonal rented furniture, in strange city in which I knew no one, I was more than willing to be swallowed up by a sense of desertion, fear, and of being completely overwhelmed. I let it take me for a while; I succumbed to the bittersweet embrace of wallowing in my own self-pity and bemoaning my present fate. For a time it was soothing and comfortable to feel ill-used and at odds with the world. Then it began to grow heavy and gnawing, like the cloying scent of the air freshener that clings to its surrounding around the garbage chute in our building. It was time to shed the dark veil of mourning I had donned in lamentation of my current circumstances. I had to find an outlet for all the hours of non-conversation and idleness I had stored up. I had to find a purpose. Writing became my purpose. I now write just to express myself in complete sentences that are not hobbled by the limited vocabulary mothers use when conversing with small children all day. I write to fill my empty hours with something productive and of my own creation. I write to find purpose and conviction and freedom within myself. I write to be myself.