Not Me Starting a Blog Because My Body Glitched

🗓️ Written on May 11

Okay. So let’s talk about how I went from walking around UC Berkeley to… not being able to walk at all. Like, body: logged out, goodbye - that kind of not walking.

Alaina and I celebrating Cal Day at Berkeley by working our jobs at the fair—the UC Berkeley Housing Booth. This was T-3 days until I lost the ability to walk.

my first night admitted at the hospital

So! I’m writing this, May 12, and I’ve officially missed three weeks of school-three weeks since I left Berkeley in a dazed, dramatic, medical-mystery-girl type fashion. At first, it felt like stress, or I had been sitting down too long - but I’m college student, sitting down too long while studying, and while stressed, is just a normal activity; every student feels that way too lol - we are ALL all stressed.

Here is what my red flag was though, I started getting weird tingling in my toes, which turned into full-on numbness, and I pushed through until I hit the “hi mom, I can’t move any of my left toes anymore” moment - love that for me.

Naturally, I headed to the nearest ER in Berkeley, which I won’t name —they told me it was a complex migraine (which, let me be clear, I have never had in my life), and that I should get feeling back in my toes soon. They gave me a migraine cocktail, drugged me up, and discharged me, even though I could barely keep my eyes open or hold up my head. I was bobbing up and down in the Uber like a cartoon character losing battery. The driver even asked if I needed to go to another hospital.

Safe to say, I was not okay.

So I flew back home to SoCal with my mom, who, to add to the absurdity, had a broken toe (and yes, the story behind that is equally chaotic and will be its blog post). She had flown up to Berkeley so that I wouldn't travel alone, since I was drugged up, scared, and limping. We were a hot mess, both express limping through the airport like a sitcom.

Imagine Homer is my mom & I limping through LAX. Mother-daughter bonding at its peak!

Once home, things escalated fast. I was trembling nonstop. I could barely walk. My new MCAS doctor (which is a rare autoimmune disease I was diagnosed with in January… I’ll tell you later) saw me and my symptoms and was like “nope,” and got me a neurologist appointment immediately. The neurologist I saw the next day, too, looked at me and said, “You need to go to the ER right now.” So my family hopped in our Jeep, and we drove to USC Arcadia.

The 1st ER, USC Arcadia, is where I got admitted—fast, like they saw me and my symptoms and within the HOUR, I was admitted and given a bed upstairs. I spent a week there, during which six different doctors and 3 nurse practitioners were stumped.

There, at first, they thought it was a massive MCAS flare, so they put me on steroids, which sent my blood sugar through the roof!

That meant:

• 3–4 finger pokes a day to check glucose - which funny enough, I asked the nurses to poke my left hand, because at that point, I had lost feeling in my left pointer finger and left middle finger, so they would poke those fingers, and I loved it because I genuinely couldn't feel a thing

  • (which I get is lowkey bad in hindsight lol, because when I did get feeling back eventually, those two fingers were so sore)

• Insulin shots - which those HURT because they varied from my stomach to my right shoulder

• Blood thinner injections (since I couldn’t move and they needed to prevent clots)

• & TWO IV's. Why? I still dont know.

  
  

Let’s just say my arms were giving purple polka-dot vibes

Then came the tests.

One of the most painful tests I’ve had in my life was the nerve and muscle testing. First, they shocked my legs with what felt like a mini taser — repeatedly — to measure nerve reactions.

Then, they inserted needles into my muscles (yes, like literal probes), to test activity and response.

On my right side, where I had constant pins and needles, the pain was unreal. But on my left, the side I couldn’t feel? Barely anything. Which is... terrifying.

Oh — and less than a day prior after I had a lumbar puncture, aka a spinal tap. (Google it if you dare.)

They inserted a huge needle into my lower spine to collect spinal fluid. The aftermath? I had to lie completely flat for 6 hours. I remember trying to lift my head slightly — instant headache. I didn’t realize just how sensitive the spine was until that moment.

here is a glimpse of my spinal tap

Then I was transferred to USC Keck School of Medicine because, although my symptoms didn't increase, everything was stagnant, I wasn't getting better, and I wasn't getting worse, and they wanted to figure out a diagnosis.

There I spent about 1 night, and that morning I saw 5 doctors, where 4 told me I had Functional Neurological Disorder (FND), which means my brain and nervous system weren’t communicating, and those four told me I 100% had it, because at that point, what else could I have?

The 1st one (so the 5th doctor) who visited me before the team of 4, said it was “an MCAS" flare and should never happen again. Five doctors, two very different explanations. Bu the first doctor the one who told me this was an MCAS flare, said to keep in mind that 10% of all neurological cases don't go solved..so not the most comforting answers from either of the doctors lowkey.

repping a USC Medicine hoodie my brother got me, my new walker lol, and a smile because I'm finally discharged

So, where does that leave me now?

On four medications, doing physical therapy, slowly learning to walk and move again, and waiting until the end of June to be re-evaluated. At that point, they’ll let me know whether I need to stay on these meds or change the treatment plan.

Meanwhile, I’m still studying to take finals this upcoming week, wrapping up my sophomore year at Berkeley.

But yes, I am still healing and trying to keep my sense of humor intact.

And somewhere in the middle of all this, I decided I didn’t want to wait. I was want to start storytelling.

So this is it — the beginning of Sam on the Daily.

This blog isn’t just about MCAS or wild ER mishaps. It’s about being in the middle of the storm—documenting the healing, the sarcasm, the grief, the gratitude, and the story—even if I’m still writting it.

If you’re still here,

Thank you for being curious.

Thank you for listening.

Thank you for showing up - you are part of the reason I do :)

Anyhoo… more to come soon!!! Like the time I had four surgeries, or how my dog Thundar was born on the day of my first one (yes, that’s real).

I’m proud I’m here.

For starting, & for not giving up

kisses, hugs, and love,

I may be healing slowly, but I’m laughing

~ Sam :)