Buckle up.  It’s the update you didn’t know you’ve been waiting for!  And it’s extra long because I can’t tell a short story!  Believe it or not, I did try to condense it.  Anyways, on with it →

5 years ago while pregnant with Jacob, I endured a grueling pregnancy with suspected Hyperemesis Gravidarum.  The nausea and vomiting lasted the entire 9 months along with a few hospital visits, some fainting, low-blood pressure, and anemia.  

3 years ago, 1 hour prior to breast-reduction surgery, the surgeon walks into triage and says “I don’t know if you were trying, but we can’t complete your surgery today because you’re pregnant!”  Another hour later, a follow-up blood test, another urine test, and an ultrasound confirmed I was not, in fact, pregnant.  Thus, a false-positive hospital-grade pregnancy test.  If you’ve noticed my figure has changed over the last few years, then now you know!  

2 years ago, I went to the ER due to vomiting and what felt like brain zaps.  It felt as if there was an electric current zipping across my brain.  In triage, I passed out while vomiting.  I was not admitted as there was not anything obviously wrong with me besides a stomach bug… the only truly relevant findings were obvious dehydration and critically low magnesium.  

Also 2 years ago, I struggled to concentrate.  I thought it was because there was more on my plate than I’ve ever had… the plight of the working mom.  I was diagnosed with ADHD and started treatment.  It seemed to help.

1.5 years ago, the morning nausea started.  And it never went away.

1 year ago, I stopped liking my favorite chicken wings, lol.  It wasn’t that my stomach couldn’t “stomach” them; rather, I started developing aversions to food similar to pregnancy aversions.

Prior to August, I battled constant stomach “bugs,” brain fog, and deep exhaustion. I also started noticing my ankles and knees felt achy like the tin man. And weakness… just weak. 

When school started, everyone noticed the weight loss, but I had no dietary explanation to offer.  I just really had no appetite.  And when I would get really hungry, I’d order an extra large smoothie with protein to stave off the hunger pangs.  I have lost 30 lbs in about 2-3 months.

On August 14th after lunch, I noticed a different stomach pain in the center of my abdomen.  It progressed to contraction type pain consistent with back labor around my left-side flank.  Since then, each day comes with its unique bag of tricks with varying levels of pain and a soul-deep fatigue.  If I do not take my Adderall, I actually cannot function.  Like… I can’t shower, can’t drive, can’t think.  

Many tests and scans later, we are on route to a potential diagnosis following some telling blood results.  There’s a very rare disease out there (JFK had it apparently) dubbed Addison’s disease.  Of course, I’ve never heard of this disease.  Nor have I ever said the word “endocrinologist” in my life prior to 9 weeks ago.  At my November appointment, my doctor has a very specific and thorough panel he will complete to learn the specifics of this highly suspected condition and how to treat it.  Until then, I’ve started on a low-dose steroid treatment to mimic cortisol production of my adrenal glands.  Addison’s, from my limited understanding, is an autoimmune disease of the adrenal glands which results in their no longer producing the stress hormone cortisol.  The comparison all over Google is Insulin is to Diabetes as Cortisol is to Addison’s.  And just as deadly.  Say we get in a non-serious car accident, and my body decides it was too stressful to handle, but my cortisol is like nah brah we don’t live here anymore… so HULK ADRENALINE rushes in… and in the deadly sense… I just get a rush of adrenaline to the dome and fade out into eternity.  And because no one knows what the heck is going on since no one has heard of this disease, they won’t know I needed to be injected with my emergency cortisol pen and taken to ER unless they see a bracelet, necklace, tattoo, or something indicating my condition.  The difference being that a diabetic person has the means to “check” their sugars to modify their medications.  Folks with Addison’s have to “trust” what they’re feeling and dose steroid medications accordingly all day long as necessary.  LOL.  So like… you know when you just KNOW your kid has a fever… but you check with a thermometer just in case to know what you’re dealing with? Is it a 99.9 cold virus fever?  Is it a 101.2 flu virus fever?  Is it a 103.4 strep throat fever?  Or is it a 104 get-your-booty-to-the-ER fever?  You respond accordingly.  Without the “number,” you’re back to the stone ages relying on your instinct.

You know how “they” say God has a sense of humor?  Let’s just say, I’m not really one with a strong sense of “self-trust.”  I’ve doubted my own pain more times than I can shake a stick at because I couldn’t understand why every single day was so dang hard.  Is everyone else waking up like this?  Do I have, like, a zero level pain tolerance?  Am I lazy?  Do I burn my energy at rocket speed and suffer burn out for days?  Or take it easy and everyone feels like I am only half there?  

There are other side effects too.  Ones that aren’t as forgivable by society like… forgetfulness that’s getting worse.  Depression.  Rage.  Panic.  Anger.  Fear.  Outbursts.  Tears.  Blame.  Shame.  I asked my daughter if there was one thing she wished mommy would fix, and she said the sickness and yelling.  Yikes.  Leave it to youngins to give you two of your problems when you specifically asked for one.  I’m sharing the shadows because I’m no saint right now, but I long to be and do good.  This creates a very diabolical headspace for me and dynamic for my marriage.  For a peek into my soul, I encourage you to read the brief but powerful Merton Prayer.  And maybe listen to "Little Talks" by Of Monsters and Men.

The doctors have written me out of work until the end of the year.  We pulled Jacob from daycare to save money since I’m no longer bringing in an income home right now.  Jon is hitting his busy season and on the brink of starting the fall nuclear power outage, and our entire lives are upside down.  I am sad, oh I am sad.  But did you see how beautiful it was outside today?  And I woke up with both kids in my bed with lanky legs and stinky breath.  And we are all alive another day, and breathing.  Another day to wake, remember I am a child of God just as my children are of me, and try again.  The grace I give others, I can try to give myself.  The grace I give myself, I can try to give to others.  Lord, please help me see.

So why am I sharing all of this?  I’m sure you know why.  Because I’ve been self-isolating.  Because it takes a village to carry people through difficult seasons.  Because I’ve had 60 unread text messages on my phone for 3 weeks.  Because if you are the spouse of a person with a chronic disease, I hope you’ll take a moment to offer my husband encouragement.  Because if you are a son or daughter of a parent who suffers, I hope you’ll take a moment and share thoughtful advice on how to navigate this with my kids without hurting them.  Because if you, yourself suffer day in and day out, I hope you’ll share with me your story so I can use it to fuel my stamina.  Because I operate best with life lived on purpose, and I feel led to come out of darkness.

Y’all there ain’t no sugar-coating this.  This is the lowest season of my life.  God is plowing the garden of my soul, and my God does it hurt.  I do not even recognize myself, nor do others.  I’ve run into countless people who don’t put name to face for a full 5 seconds.  But please do not be confused, I have not despaired.  My heart hurts beyond anything I can put into words, but there’s a well within my soul that still praises God for his faithfulness in my life.  As someone who didn’t come to God until after the birth of my daughter, to feel access to God’s spring is both foreign and sure.  I’m not used to it, but I believe in it more than anything.