Monday, November 14, 2016

Love and Laughter, despite lupus. Why a lupus support system is essential!

I like to think Johnny and I have a fairly simple "No Food" policy in our bedroom.

There are really only three exceptions:

1) When I'm pregnant

2) When I'm in a lupus flare

3) When there's a dark chocolate emergency

The nausea of pregnancy is understood and expected. And chocolate is, well, chocolate.

But it's those flare-filled mornings when I can barely move that I'm most appreciative of a bed side snack. Thankfully, those days have been few in number over the past couple of years. But I remember all too clearly the days when I had to allow those heavy hitting medications (which must be taken with food), to kick in before I could get out of bed. I'd wake up 20 minutes early, take the meds with food, and then lie there in pain, waiting until they took effect. I literally couldn't move. It was painful enough just to move my jaw to chew and swallow. In fact, in the pre-Pillfold days, Johnny would set out my pills and snack the night before. Opening my bedside drawer and unscrewing a series of pill bottles were tasks too impossible to even consider.

As for the snacks I kept bedside, I could never go wrong with a couple of firm, crisp gingersnaps for the nausea. And for the medications that brought their own form of nausea, if taken on an empty stomach, a pack of peanut butter crackers usually did (and does) the trick.

But unbeknownst to little old me, both selections were extremely loud snacks. And apparently disruptive. And yes, even when nibbled quietly in one corner of the bed.

Or so I've been told.

It was one lazy Saturday morning, during my second pregnancy, when I discovered the truth about my ill-chosen snacks. As I did most mornings before Johnny woke up, I quietly slid open my bedside drawer, and pulled out my cookies. I innocently and oh-so slowly untwisted the crisp, crackly package of gingersnaps, and removed two or three from the sleeve, twisting and maneuvering the plastic as I went. I then proceeded to slowly nibble one cookie after another, cracking each sweet, rock-hard morsel against my teeth.

It was then that my husband took a stand.

Johnny woke up, and exchanged a few not-so-pleasant words with, not me, mind you, but with my gingersnaps. Aghast, I asked if he could hear my nibbling. He guffawed, and said unequivocally, yes. Incredulous, I asked if he could really hear me, even when I turned my head the other way. He smiled, and asked me to kindly hand him the sleeve of cookies. He then proceeded to demonstrate just what it sounds like to lie next to a person eating a gingersnap in bed. (It really is quite loud.)

Instantly, I had a bevy of questions for him: "Has it always been that loud? Has the plastic always crinkled so crisply? What about when I eat a gingersnap in one bite? Is it better? Was it this disruptive during my first pregnancy?"

And then I just kept going: "Are the peanut butter crackers as bad? Is the clear thin plastic as loud as the white thick plastic? Can you hear me chewing, even if I get under the covers, like this?"

He assured me that the answers to all of the above were yes, adding that those little packs of peanut butter crackers made more noise than an entire box of gingersnaps. (Who knew?)

I then said something like, "But, I don't understand. I've been doing this for so long...for like, 10 years." And he said, "I know." We then looked at each other, smiled, and burst out laughing. We laughed so hard we cried.

All of those mornings of nausea. All of those flares. All of those cookies and crackers.

These are the moments when I'm reminded why I've been able to withstand the crushing blows that lupus has dealt over the years, Why I've been able to laugh when I've wanted to cry. Why, on a particularly bad lupus day, when my joints are aching and swollen, when I'm tired and despairing, I find the strength to carry on. It's because of the loving, supportive, accommodating, honest, humorous-filled relationship I have with my husband. One that is stronger than the crippling symptoms and side effects of any disease. 

The years of sickness. The years of sacrifice. The years of laughing and loving, all despite lupus.

In fact, there's a scene in a movie that makes me think that lupus may have given us an advantage:

A young woman has married what seems like the man of her dreams - smart, successful, devoted. But early on, she realizes the privileged, pampered lifestyle with which he'd grown up is driving them apart. (Turns out he is also spoiled, and self-absorbed.) She knows she's made a mistake, but can't understand why she'd been so naive. So she turns to her mother for advice.

Her mom thinks for a moment, and says, "I don't think you ever really know someone until the chips are down. Maybe the chips have never been down for [your husband.]" And then she says something like,  "Maybe that's not such a good thing."

While I can't vouch for that fictitious couple, I can promise you this - the chips have definitely been down for this Gorman duo. And then they've somehow fallen even further. But our marriage is stronger, no doubt, because of what we've endured. Johnny has seen me through my very worst moments in sickness and health, and I've watched him embrace his role as caretaker. He's held my hand through every bout of illness, tightening his grip with each flare. His kind and thoughtful nature is evident each and every day. But when lupus attacks, it's his caring, nurturing, empathetic heart that absolutely shines. To this day, he welcomes his role as nap enforcer, and strives to help me keep my disease in check.

I know the kind of person he is. I know what he's made of. I know what we're capable of withstanding.

He has made a monumental difference in my life with lupus, and that is why a support system is such an essential part of life for any lupus patient. It's like built-in armor that allows you to keep putting one foot in front of the other. It's a spouse, a sister, or a close friend who allows you to cry when you need to. It's a trusted co-worker, or fellow lupus patient who gets you to laugh when you didn't think you could. It's that love and support that remind you that you're worth something, despite lupus.

They are the ones who care for us so deeply, despite our swollen joints, horrific pain, devastating hair loss, and failing organs.

And yes, despite the crunch of a cookie or cracker.


2 comments:

Anonymous said...

Dear Sara, I love reading your blog. I was diagnosed in early October 2016 and I find true comfort and inspiration in your posts. You give me a vision of a better life and future despite lupus. Please, never stop writing!

Sara Gorman said...

Thank you so much for your kind words! Best of luck as you dive into this first year of lupus. Any questions? Just ask. Happy to help. I'll be here!