I am far from being the writer I dream of being, but I have enjoyed learning the craft of storytelling. It has been helpful to observe a narrative in my current situation with systemic lupus (SLE) at twenty-one weeks pregnant.

As I keep being asked for updates, here’s where I’m at physically, having a lupus in pregnancy. However, I hope you’ll look at this with me through a writer’s perspective at the end of this post. This is the best way I can express right now where my heart is.

(I know walking with someone through an illness isn’t for everyone, so I am not offended if you scroll on.)

The Narrative Begins

This summer, I was thrown into an unwanted story through a very surprising unplanned pregnancy. That first trimester, the grief was real, but I determined to accept and prepare my heart to welcome this child. (Our kids were ecstatic!)

Then, in my second trimester this fall, the story escalated. In the last six weeks, I’ve been to the hospital five times (the longest stay was for six days). To my surprise, I was diagnosed with systemic lupus (and then some) and went into a full-blown debilitating lupus flare, where my autoimmune system decided it wanted to kill me.

Do you like research?

For those that do like research, here’s some facts I’ve slowly dug up: I represent a small percentage of the population (far under 1%), diagnosed with lupus nephritis (but almost all are women of childbearing age). Among those, very few get pregnant with an active disease. However, if lupus wasn’t managed before pregnancy, there is a 60%+ likelihood of a flare. As I’ve picked up strongly from every doctor, nurse and article I can find, unmanaged lupus in pregnancy is a huge “don’t do this.”

Historically, our stats for survival were about 50/50. Gratefully, with Western modern medicine, our survival has greatly improved short term, but long term isn’t as peachy.

In addition, fetal mortality is still relatively high (“up to 75%,” or a “50% normal outcome,” whatever those mean). But, despite the high risk of loss in early pregnancy especially, this baby is still alive and kicking! AND he still appears healthy by all external diagnostics. Last week we made it to the U.S.’s “viability” range, which was relieving. True, there is only a 6% chance of survival for my little guys if he is born in the next two weeks. But by Christmas, that percentage will go up to 50%, and rapidly each week thereafter. My doctor is hoping we’ll to make it to February, but I’ll take my chances with January if need be. Regardless, this little guy will likely be out long before his due date (originally April 4th and then moved to Easter, on April 17th). But who can say?

(Here’s one of countless articles on SLE and this one more specific about SLE Lupus in Pregnancy)

Physical Update

This past week has been very tiring, spending two separate days in the hospital for procedures and feeling wracked with insomnia. Before I was on lupus nephritis meds, I has been sleeping about 18 hrs a day. My body still wants to; the extreme fatigue is real.

The problem is, I can’t. I am averaging about 5-6hrs of sleep a night, yet need so much more. If I stay in bed “sleeping,” often I can fitfully doze for another couple hour stretch(es). But in between them, my brain will be going, like I drank too much caffeine, heart pitter-pattering. During the morning hours, I am almost always nauseous, have abdomen pain, and/or have acid-reflux too, caused by an unholy combo of meds, pregnancy and indigestion.

Not getting consistent sleep is a bane. I used to suffer from insomnia cyclically in the last years, but in a lupus flare, already so weak and exhausted, it’s a totally different battle. And because of kidney disease and pregnancy, as of now I am forbidden from sleeping meds. Lavender oil and tea just don’t cut it.

This is often when I write or read for short stints until my eyes get too blurry. Then I go back to trying to find calm, breathing deeply, refocusing on good and praying. I am so profoundly grateful I had been practicing these for years before this sickness, otherwise I’d probably go crazy with frustration. (Sometimes I still do.)

From what I understand, much of this has to do with the medications I am on. It helps me to think of it like chemotherapy: short term misery for long-term health.

Based off my last labs, these meds are causing my kidney function to improve and my blood pressure to stay just low enough that I am not re-hospitalized. And even I feel improvements: I can now sit up for fifteen-twenty minutes, stand for a couple, and I’m not loosing huge masses of hair. My mind is more clear, my eyes aren’t as sensitive, my brain not as dizzy, and I can hold conversations for longer. I haven’t had a migraine for two weeks, either!

That is worth celebrating, is it not?

But then there are other daily struggles. The swelling hasn’t gone down, but up. My whole body is a tight balloon that feels impossible to maneuver. My children draw smiley faces in dents on my legs, which like wet sand, fade back to smooth. My taunt skin aches. My belly is the size of an eight month pregnancy, filling old stretch marks with fluid, and daily ripping bright red new ones. Rashes appear where veins have popped from too much pressure.

But there is good news too–the swelling is in my skin, not in amniotic fluid. I don’t have blood clots. I even received initial kidney biopsy results: I have level three lupus nephritis, not level four or five, as they had been expecting.

However, level three still requires aggressive treatment to save my kidneys, which is where we really need wisdom.

We have a tentative plan with the specialty obstetrics to keep baby in long enough to survive his birth. There are many risks in the coming months: stroke, embolism, heart attacks for baby or I, an unsurvivable delivery, and a slew of long-term effects on this little guy’s health. Blood pressure and preeclampsia are still the primary concerns, as daily I’m still on the edge. However, my OB is optimistic we’ll get a little further along in the pregnancy before we hit a wall there, as there is still some leeway in treatment. There is a direction and hope, which weekly increases for this pregnancy.

However, the nephrology field holds the motto, “Time is Kidney.” I like having kidneys that work. Tomorrow we consult with my kidney doctor and I am a little nervous. I wish my kidneys and baby weren’t pitted against each other, but that is the current reality.

We walk the line.

Miracles and Storytelling

For those who pray for miracles, thank you. We hope for miracles to happen. We’ve seen heaven intersect earth before; we will see this again. I feel expectant.

And yet, one of my deepest prayers is that in the unknown–with scary news, impossible decisions, and no secure future–something glorious will be born. And this might be a different miracle than the one we beg for.

This is what I observe: Beauty only comes from ashes. Trees only grow from seeds that were planted and died. Resurrection only comes after the crucifixion. The best stories are born of the worst conflict and most unsurmountable climax.

And that is what I do not know: what act of this play am I in? Are we entering the pinnacle of the plot? Is the scene still being prepared for an incredible ending? Or we closer to the story’s conclusion?

My family and I struggle daily. Everyday I wish this to end. And yet I want to be content with wherever we are on this story arch. I pray for this to be an extraordinary story, even though I am unclear in whether it is a drama, a tragedy or an adventure.

To allow space for miracles, for the happy ending we all hope for, I must step back as an observer and let the Author write this unexpected play that I cannot control or see the end of.

This is what I observe: Beauty only comes from ashes. Trees only grow from seeds that were planted and died. Resurrection only comes after the crucifixion. The best stories are born of the worst conflict and most unsurmountable climax.

-Elisa Johnston-

Why Reaching Twenty Weeks is a Big Deal! Lupus in Pregnancy Update #5

Celebrate Good

We would have not made it these last six weeks with people in our church, community, school, work, neighborhood, and around the country and world supporting us. From gifts, to housework, watching the kids, taking me to appointments, meals and more–We are forever grateful. (And someday–although maybe not for awhile yet–I will send you a thank you card!)

And Mary sang this song:

“My soul is ecstatic, overflowing with praises to God!

My spirit bursts with joy over my life-giving God!

For he set his tender gaze upon me, his lowly servant girl.

And from here on, everyone will know that I have been favored and blessed.

The Mighty One has worked a mighty miracle for me; holy is his name! Mercy kisses all who fear him, from one generation to the next.

Mighty power flows from him to scatter all those who walk in pride.

Powerful princes he tears from their thrones and he lifts up the lowly to take their place.

Those who hunger for him will always be filled,

but the smug and self-satisfied he will send away empty.

Because he can never forget to show mercy,

he has helped his chosen servant,

Israel, keeping his promises to Abraham and to his descendants forever.”

Luke 1:46‭-‬55 TPT