And it All Falls Down - A Sudden Health Crisis and a Rare Diagnosis
Oh, how life can come at you fast...
Just three weeks ago, I was walking my dog three times a day, going to Pilates each week, researching race-walking leagues to join, and mapping out my plans for winter.
Then, everything changed: I was diagnosed with a rare condition that left me hospitalized and struggling to walk.
One minute, every date on the calendar felt guaranteed; the next, I felt like I couldn't make any plans at all.
What started as a small knot on my back spiraled into a journey of anxiety, pain, and a medical mystery—pulling me into an abyss of uncertainty.
Monday, October 21st, 2024:
I woke up with a painful knot on my back—one of those familiar aches that makes me realize I’m definitely not 20 anymore. I thought, maybe it’s time to start lifting weights or consider getting a new bed. I traced it back to the AMC movie theater chair from Saturday; Terrifier 3 was scary, but the real horror hit when I stood up after the movie and realized recliners don’t always equal comfort.
Usually, I can fix it:
Roll around on a tennis ball, thwarting my dogs belief I’m trying to play fetch.
Apply a heating pad until I’m roasting and an ice pack until I'm numb.
When all else fails, get a professional massage.
But this time? None of it worked.
Wednesday, October 23rd, 2024:
The pain was so intense that I flipped my mattress before bed, desperate for relief. But around 3 a.m., I woke up to the most excruciating back pain I’d ever experienced and moved to the couch, hoping a change in position might help.
Thursday, October 24th, 2024:
By morning, the pain finally subsided – thank you, Ikea – but I was left with a strange, tingling sensation down my back and stomach—a pins-and-needles feeling that made my skin hypersensitive, almost like the burn from a bad sunburn.
Despite that, the remainder of the week was business as usual. Aside from the sensitivity in my back, I wasn’t worried and figured it was due to my oncoming period or a pinched nerve.
I vowed to never sit in another AMC movie theater chair again.
Little did I know, the source of my discomfort was deeper and far more unsettling than a bad recliner.
July and August of 2024:
In retrospect, I think the first signs of my symptoms started a few months earlier.
That strange tingling sensation down my back and stomach? I first noticed it in July, but back then, it was only along my back and under my left breast.
Google said paresthesia — a tingling or prickling sensation often associated with nerve irritation and can be triggered by hormonal changes.
My OB/GYN said it was likely due to the weight of my breasts and not always wearing a bra.
Great, another PMS symptom to add to the list, but nothing too concerning.
At the same time that this pain first surfaced, I had a handful of dizzy spells.
I thought my blood sugar was low.
I thought my iron was low.
I thought I needed to drink more water.
I thought I had a hormonal imbalance.
I went to the doctor to get bloodwork done. My bloodwork was normal, other than my MVP (Mean Platelet Volume), which suggested possible internal bleeding.
My doctor asked if I had noticed any increased bruising or bleeding. I hadn’t.
At a follow-up appointment a few weeks later, my MVP had returned to normal, and a closer look at the platelets under a microscope didn’t raise any concerns. Despite that, throughout August, I still experienced occasional bouts of dizziness that I couldn’t explain.
A MyChart message to my Primary Care Physician (PCP).
My doctor replied that testing for deficiencies wasn’t necessary and instead suggested I come in to see the nurse. I chose not to follow up since the issue wasn't constant. Besides, with my annual physical coming up soon, I figured if the dizziness persisted, I could address it all in one visit.
While the dizziness never returned, the stinging pain would come and go every few weeks. Looking back, I wonder if these symptoms might have been an early sign of my current condition, though I can’t say for certain.
Monday, October 28th, 2024 - Friday, November 1st, 2024:
The previous week’s symptoms lingered but didn’t hold me back. The days leading up to Halloween felt normal: work kept me busy, I managed to cook, clean, and walk my dog as usual, and I was enjoying the marathon of horror movies streaming.
I brushed off each new discomfort, blaming that time of the month:
The stinging back pain? Period and breast-related, like my OB/GYN said.
Tightness in my stomach? Bloat from my period.
Difficulty urinating? Maybe my period cup was in too high?
However, by Thursday, the symptoms didn’t just linger—they intensified.
Urination became increasingly difficult. I had to physically press on my bladder to get any relief, and that tightness in my stomach? It wasn’t just bloating; it was a deep, persistent fullness.
My left leg began to feel unnaturally heavy. It felt as though a three-pound weight had been strapped to it, making lifting it almost impossible. Getting into the shower was a struggle, and climbing just a few stairs left me breathless.
At this point, I was no longer convinced that a knot on my back or my period was to blame. The symptoms were far more complex, and I started to wonder if the root cause was something else entirely. My thoughts shifted to another possibility: the withdrawal from my anxiety medication, Buspirone (BuSpar).
I’d been on a low 10mg dose for only a month, but my symptoms started at the exact same time I began tapering off the medication.
A quick Google search quickly sent me down a rabbit hole of possible side effects, many of which aligned with what I was experiencing.
I was convinced the medication was to blame—unless it was just a coincidence. But how often do coincidences like this really happen?
I messaged my psychiatrist detailing my symptoms. No reply.
I messaged my PCP detailing my symptoms. No reply.
As someone who has had health anxiety since childhood, I often find myself searching Google for answers about any new change in my body – and this time was no different.
My mind raced through worst-case scenarios:
A blood clot in my leg from birth control
Multiple sclerosis (MS)
Guillain-Barré syndrome
Despite my physical symptoms, I questioned whether it was just anxiety causing me to overreact to something benign. I couldn’t help but find it ironic that the very medication I had been taking to manage my health anxiety might have been responsible for the debilitating symptoms I was experiencing.
I vowed to never take anxiety medication again.
Little did I know, the source of my symptoms would turn out to be a harder pill to swallow.
Saturday, November 2nd, 2024:
By the weekend, my strength was fading fast.
Hypersensitive skin: Any slight touch—whether from my hand or my clothing—sent jolts of discomfort through my back and stomach.
Struggling with movement: Walking my dog now meant barely stepping outside my building—a far cry from our usual route through the park.
Exhaustion from standing: Standing long enough to make a meal was out of the question. Even grabbing a quick snack in the kitchen left me yearning to sit down.
I felt like I was physically falling apart.
It was a miracle and pure coincidence that my family was visiting Chicago when they were. I knew I couldn’t keep up with my usual routine, which involved walking my dog two more times that day. I asked my mom to take him back with her. I was planning to visit Wisconsin the following Wednesday to go to a comedy show, so I figured I'd pick him up then.
While they explored the city, I stayed on the couch, alternating between an ice pack and heating pad. Despite how I was feeling, I was convinced that a few days of rest would have me back to my usual routine by next week.
Saturdays were usually my chance to unwind—either curled up at home or out at dinner with a friend. But that evening, I found myself stuck in an internal debate:
Should I wait until Monday to hear from my doctor, or should I go to Immediate Care tomorrow morning?
Each step to bed was a struggle. My left leg barely lifted as it dragged behind me, and the sunburn-like stinging sensation on my back and stomach left me stiff and in pain.
Once I settled into bed, I reached for my laptop, logged into MyChart, and searched for the nearest Immediate Care center, preparing for what tomorrow might bring.
Sunday, November 3rd:
I woke up knowing without a doubt that I was going to Immediate Care. My symptoms hadn't improved, and I felt increasingly weaker.
I needed answers — now.
As I head to the elevator, weakness overwhelmed me. For a moment, the thought of turning around, collapsing on the floor of my apartment, and curling up in a ball felt like the only relief. But I knew I had to go, so I FaceTimed my mom, hoping she could help me muster the strength to get on the elevator and make it to Immediate Care.
This wasn't something I would normally do. Emotional support? Not my thing.
I’ve always been the kind of person who prefers to handle things on my own. I only ask for help when there’s a clear issue someone else can fix, or when I need the expertise of someone who knows more than I do.
But in this moment, I couldn’t ignore the weakness I felt or the fear in my chest. I needed support, even if I wasn’t used to admitting it.
When my mom answered, I took a deep breath and said,
“I’m going to immediate care.”
The moment the words left my mouth, the tears started to flow, and I blurted out,
“But I feel like I’m going to pass out.”
My mom knew my leg was bothering me, but she had no idea about the other symptoms or just how much I was struggling.
I step into the empty elevator, praying no one else will get on as my face is buried in my arms, tears streaming down uncontrollably. As the doors open, I desperately try to call my mom back, hoping she’ll answer before I make my way through the lobby.
She picks up just as I pass the doormen. I don’t look directly at them, but I’m sure they saw and heard me. Normally, I’m composed—today, I’m limping and in tears.
I push through another lobby toward my Lyft, my mom asking over the phone what’s wrong. Frustrated, I stop in my tracks and cry out:
“I can barely walk.”
A woman at the front desk asks if I’m okay. I don’t answer.
The bellhop, who I usually greet with a smile, watches me with concern.
I keep my head down, desperate to reach the refuge of my Lyft ride.
While I’m embarrassed, there’s a strange sense of relief. For the first time since my symptoms began, I’m letting some of the discomfort spill out, and I’m moving closer to the answers I've been seeking.
When I got to Immediate Care, the floodgates reopened, and I broke down in tears as I described my symptoms:
I can barely walk or lift my left leg
I can't pee unless I press on my bladder
I feel pins and needles on my back and stomach that sting to the touch.
I feel weak overall and get out of breath just from standing for a short period.
The woman at the front desk said my symptoms sounded serious.
The nurse who took my vitals said my symptoms sounded serious.
The doctor said there was nothing he could do, and that my symptoms sounded serious.
I was told to go to the ER.
I was admitted and underwent multiple CT and MRI scans, ultrasounds, and blood draws.
After reviewing the results, several concerns were ruled out:
Multiple sclerosis (MS): ruled out.
Kidney function: normal.
Brain: clear.
Nutritional deficiencies: none.
Blood clot in my leg: not present.
I started to worry I’d leave without answers. While I hoped my issue wasn’t serious, I preferred an explanation with a solution over leaving in the dark.
Still, I had to go through another MRI.
Monday, November 4th:
After being transferred to the Neurology floor for further testing, my neurologist came in that evening to review the MRI images of my spine.
Before explaining the results, he asked me a few questions:
About my smoking history
What led up to my symptoms
The medication I had been taking
My family health history, specifically if there were any known cases of angiomas or Cavernous Malformations
When he showed me the images of my spinal cord, he suspected a Cavernous Malformation. Later that night, an MRA confirmed the diagnosis.
Cavernous malformations are abnormal clusters of small blood vessels, typically found in the brain and spinal cord. About 1 in 100 to 200 people have them, though 25% of those don't experience any symptoms. For others, like me, these lesions can burst and bleed slowly, leading to neurological problems (Johns Hopkins Medicine).
While mine was no longer bleeding, the blood that leaked out had affected the surrounding nerves, causing the weakness in my left leg, bladder, and bowel muscles, as well as the pins-and-needles sensation across my back, stomach, and under my left breast.
Never in a million years could my health anxiety cook this up.
I had never heard of cavernous malformations before, and no amount of Googling my symptoms ever pointed me in that direction. And not only do I have this rare condition, the location of mine makes it even rarer (Cavernoma UK).
Was mine genetic?
Did a brief American Spirit habit over the course of 5 months play a role?
Could it be the hormonal birth control I was on?
Had I been carrying this malformation in my spinal cord for years, and it was only a matter of time before it hemorrhaged?
Or maybe... the AMC chair was the culprit after all?
The truth is, while the doctors knew what was causing my symptoms, they were just as puzzled about why or how it happened. They were looking to me for insight, too, because the exact cause of cavernous malformations is still unknown.
November 6th, 2024:
After two days of being monitored on the neurology floor, I was discharged.
Though I had originally planned to visit Wisconsin this Wednesday for a comedy show, my trip had turned into a post-hospital recovery stay with my family instead.
The first few days after leaving the hospital were emotionally heavy as I processed everything that had happened and the challenges ahead. From feelings of despair and regret, I’ve shifted into a place of hope and motivation.
Physically, my symptoms have improved as well, which is why I’m planning to return to Chicago next week. Being back in my own space, just minutes away from my doctors, will allow me to settle into a familiar routine. I want to make the most of this time before surgery disrupts everything, giving me the chance to focus on preparing for the next steps in my journey.
Next Steps:
First physical therapist appointment next week.
Follow-up appointment with my neurosurgeon and spinal surgeon next week to discuss surgery and next steps.
Current Treatment Plan:
Dexamethasone to reduce inflammation (I’m currently tapering off)
Bethanechol to help with urination
Pantoprazole to manage the GI side effects from the steroid
Progress Since ER Visit:
Walking: Lifting my left leg is easier, allowing me to walk faster with less effort.
Standing: I can stand for longer periods without getting fatigued, and I’m back to whipping up meals in the kitchen.
Urination/Bowel Movements: It takes a hail mary, Senokot, and a bit of toilet kama sutra, but I'm able to go.
Cognitive and Motor Function: My right leg, arms, hands, and cognitive function remain unaffected and are working well. I mean, I did manage to write this blog.
As of now, my race-walking dreams are on hold and my winter plans of ski lessons and visiting family in Arizona are paused.
While my path has shifted, so have I.
This tumultuous journey of snowballing symptoms and a rare diagnosis has taught me two things: life cannot be perfectly planned, and there's power in vulnerability.
Letting Go of the Plan
I lived my life unhurried, confident there would always be time to spare. I’d push plans and goals off until the right moment—whether that meant tomorrow or next month. I spent so much time mapping out what I could do someday, as if I had all the time in the world.
No matter how cliché the phrase “live life to the fullest” is, deep down we all want to. Sometimes life yanks away our mundane routine and expectations—whether through a car accident, a breakup you thought would end in marriage, or the unexpected loss of a loved one. But in those moments, our perspective shifts. We get a glimpse of life's uncertainty, and if we're open to it, those realizations can stick, helping us avoid slipping back into our old ways of living.
While some plans will have to wait, I now have many others that I’m excited to dive into and accomplish before surgery.
Letting Down the Walls
Though I've always found my strength from within, I now see that true resilience is rooted in vulnerability. Embracing it has opened doors for stronger relationships, deeper trust in myself and others, and a healthier way to process emotions.
For much of my life, I kept my true self hidden, using privacy as a shield and believing only I could understand and accept myself. I feared burdening others or being misunderstood, so I kept my struggles to myself, convinced that no one could truly understand or offer the help I needed.
But this diagnosis has accelerated my ongoing journey toward greater openness. It’s shown me the beauty of genuine connection and the relief of allowing others to care for me in return. At the same time, it’s exposed relationships that once felt meaningful but, in reality, lacked depth and closeness.
Sharing this personal blog is just the beginning. Moving forward, I’m focused on living with intention—building stronger relationships and pursuing experiences that align with the life I want to lead and the person I’m becoming.
As I turn the page, I’m focused on doing more and planning less, while embracing authenticity over perfection. I look forward to letting the story unfold, one moment at a time.