Shedding
In 2024, I unintentionally lost 30 pounds in a matter of 4 months. And then I lost 50% of my hair.
One of the most annoying aspects of lupus is the fact that you just never know which part of the body the disease will attack next. During my first flare in 2019, I suffered neurologically: headaches, vision and hearing loss, muscle weakness, etc. But in 2024, I began to suffer from severe GI distress. What started as an unfortunate parasitic infection turned into a flare that I never saw coming.
For four long months, I suffered from constant diarrhea - sometimes 7-10 episodes per day! And when I wasn’t trapped in the bathroom (or as my husband so lovingly referred to as “my office”), I was experiencing painful intestinal cramping and nausea making it almost impossible to eat without discomfort. I lived on electrolytes, Tums, and Zofran and became a pro at scraping the food around on my plate to make it look as if I’d eaten more than I had. I was prescribed three separate rounds of antibiotics, two rounds of oral steroids, and one round of anti-parasitics. And yet, my symptoms persisted.
The extreme and rapid weight loss caused my skin to literally hang off me like an oversized dress. My eyes were sunken in with all color gone from my face. For weeks, I spent most of my days in bed, too weak to go on walks or do household chores, wondering if I would wither away while the rest of the world carried on as normal.
“This was the lowest point of my life and i entered into a deep depression.”
When my rheumatologist prescribed new immunosuppressants, my symptoms eased. After regaining some strength, I met with my GI doctor, an infectious disease doctor, and an immunologist to discuss what the hell my body had just gone through and, more importantly, what to do if symptoms returned!
To sum it up, the GI infection (caused by a deliciously decadent pina colada in Mexico) ignited my body’s immune system to fight said infection. However, given that my immune system is such an overachiever, it not only squashed the parasite but forged ahead to also squash my healthy bacteria and gut microbiome, similar to what someone with Crohn’s Disease or Ulcerative Colitis would experience.
The good news is that my new treatment has been very successful in curbing my GI symptoms.
The bad news is that now I’m a sitting duck - terrified of it returning. And, due to the added immunosuppressants, my body became compromised and at risk for infection.
So it should come with no surprise that, 6 weeks later, I contracted a viral infection: shingles - the same virus that causes chickenpox. Though it’s more common in people ages 50-60, I became susceptible since my immune system was weakened.
Typically, shingles presents as an asymmetrical band of blisters along either the right or left side of the torso. But we all know that my body is anything but typical. So for me, shingles attacked my trigeminal nerve (i.e. the largest cranial nerve responsible for sensation in the face) on the right side of my head.
At first I experienced a tender/itching/burning sensation and assumed I had been bitten by an insect or had an allergic reaction to one of my medications. Yet within two weeks, the rash had turned into open blisters that were extremely painful. Once my dermatologist diagnosed it and I began taking the anti-virals used to treat it, I was instructed to see a retinal specialist ASAP. Due to the location of the virus, I was at risk of temporary and/or permanent vision loss in that eye caused by inflammation of the cornea and iris. Fortunately, the virus had not affected the optic nerve!
“I’m shocked. I’ve never treated a patient with trigeminal nerve-affected shingles that did NOT lose partial or full vision.”
- Dr. Nan Wang from the appropriately named Hope Eye Center
“A few weeks later, my hair began to fall out. ”
Over the course of about 2 months, I lost 50-60% of my hair. Clumps of hair came out every time I washed or combed. Initially, I assumed the hair loss was a common side effect of one of my medications. But when I started finding mounds of loose hair around the house, in the shower, and even in the car, I began to worry.
I also experienced tenderness along my scalp - similar to the discomfort felt when you take out a ponytail at the end of the day. The throbbing would wake me up in the night.
Another visit with my dermatologist brought another diagnosis: Telogen Effluvium - a common form of alopecia caused by stress.
Shocker.
To help me “hide” the thinning spots, my amazing hairstylist gave me an easy and fun pixie cut, helping to restore my confidence.
In the past, my illnesses have been mostly invisible to an outsider. My {many} endometriosis scars are hidden under my clothing. My neurological symptoms caused by lupus are easily concealed.
But the shingles - the ugliness of this rash - was on display for all to see. The visible hair loss could not be covered up with makeup or clothing.
“My go-to smile and composure I’ve adopted over the years could no longer disguise the brokenness I felt.”
Why was my body - from the tips of my toes to the top of my head - shutting down on me?
Why was every facet of my life put on hold over and over again?
Why did my body feel so foreign to me?
What healing needed to take place in order for me to resume my life?!
My oldest son has been fascinated with reptiles since he was little. He used to have a leopard gecko named Rex (may he rest in peace) and then a bearded dragon named Spike and now a gargoyle gecko named Ghost (who has reddish skin and white eyes and scares the crap out of me). Although I’ve never mustered up the courage to actually TOUCH any of them, I love to sit there and watch them: how they walk, how they eat, and how their eyes follow me as I move. I remember walking in one day to the disturbing sight of Spike eating his own skin! I was so disgusted and promptly googled whether this was “normal reptile behavior”.
It is. Reptiles shed their skin frequently, all part of a healthy growing creature.
But one fact that really stuck out to me while I was reading about this process is that you absolutely should NOT pull the shedding skin off until it is ready to come off on its own. Removing it prior can cause serious injury to your pet as it means the skin underneath is just not quite ready yet.
And here’s where it gets even MORE interesting… Reptiles do not have eyelids. Rather they have eye caps (or spectacles) that help to protect the animal’s eyes. And during the normal shedding cycle, these eye caps are also supposed to shed. However, in the event that the eye caps do NOT shed, it results in a condition called retained eye caps and, without the proper release of this skin, the animal can struggle with impaired vision, infection, and even blindness!
Sound familiar?
I began to wonder if I was in some way rushing my own journey, actively peeling away “dead skin” though my “new skin” was not yet ready to be exposed. Was I hurrying the healing process, as if my feeble attempts could somehow quicken the discomfort? Was this my body’s wakeup call to abandon my old self in order to save my new self? Did I possess characteristics - bad habits, negative behaviors, toxic relationships - that I needed to “shed?”
Was the mind-body connection so strong to have caused my own physical dismantling??
The verses in Ephesians 4 rang loudly in my head:
I wonder where someone else might have turned at this point, after having lost so many aspects of themself. I wonder how my friends, my family members would have begun to put the pieces of their lives back together. Or if they would have reached a level of contentment sooner than I.
My healing process has been slow and terrifying and ugly and oh so freeing. Over the past 2 years, I’ve learned so much about myself. And there was no quick fix that got me here, although I prayed for one every step of the way. It was a painfully slow unraveling of the faux armor I had so carefully sewn around me.
My journey started with a long, controlled breath in and out, a step backwards, and an unlimited supply of self-giving grace. Because my healing was not for my current, broken body but for the little version of myself. The younger Christine that had endured distressing behavioral patterns that forced me to put my own wants and needs aside to appease others… even at my own detriment.
I don’t think I’m the only woman in her 40s desperately searching for connection and healing, hoping to find a version of herself that she’s proud of. But, as I’ve said from The Beginning, I’m hoping to find the why in my chaos, while glorifying God in the process.
So gather ‘round, friends. Because I can’t wait to share this next chapter with you.