Post 7: Catching Up Part 2 of 4 – The Hospital Stay That Hit Pause
Welcome back to part 2 of 4 in the “catch you up” series, a recap of the past couple of months and the not-so-fun reason I launched this blog… and then promptly ghosted it.
When we left off, I had just left the emergency department on April 24 after spending 22 exhausting hours there. I was wiped out, physically, emotionally, and mentally. My body was screaming that something was off, but I couldn’t put my finger on it.
And, honestly, I felt failed by the very system I have to trust every day as someone living with chronic illness.
That weekend was mostly spent on the couch, snuggling my Italian greyhounds, Hiroshi and Pocky (if you’re new here…welcome, they’re the real stars), and trying not to vomit. I could barely keep down food or fluids. Nothing felt right.
April 29th
I followed up with the surgeon who had done my recent procedure, and bless him, he’s genuinely wonderful. He checked the surgical site (which was still open but improving) and agreed that something wasn’t right. I wasn’t myself.
He contacted my primary care office and shared his concerns, especially around how little I’d been able to eat or drink. The team suspected dehydration, and I started getting IV infusions three times a week.
Coordinating rides to all those appointments was its own challenge, but thankfully, my husband, mom, mother-in-law, and amazing friends Jasmine and Kayla all stepped in and surrounded me with support driving me, checking in, and helping me get through.
The fluids helped a little, but the nausea remained constant, and I was still unable to eat without vomiting. Even my favorite foods didn’t tempt me. I had lost 13 pounds by that point.
When I finally saw my PCP and explained all this, I asked if we could run labs something just felt wrong. Her response? “Don’t try to dictate your own care.”
That hit hard. As someone with complex chronic illness, being dismissed by a provider, someone who’s supposed to coordinate your care and help you access specialists can be devastating. Thankfully, she did end up ordering labs, but that interaction stuck with me.
May 7th
I arrived for what I thought would be a routine infusion. But the nurses and the nursing director who had come to know me well could see something wasn’t right. They listened, they believed me, and they advocated for me.
Thanks to their support, I was admitted to the hospital that day.
What followed was an 12-day hospital stay that gave me some answers, a lot of healing, and a bit of myself back.
So, what was going on
To start, I was holding nearly 2 liters of urine that’s basically a jumbo soda in my bladder. I had lost the ability to urinate properly and could only push out small amounts. After hours of trying to go on my own, I was placed on a Foley catheter to rest my bladder.
Remember when I mentioned bladder issues back in Part 1? This was the result of being repeatedly dismissed. A perfect example of the Swiss cheese model of healthcare failure, where too many gaps in the system align and let someone fall through.
Midway through the hospitalization
I began bleeding from my bladder. Turns out, the catheter was irritating the thin, fragile veins inside my bladder (thanks, EDS). The spasms caused by the catheter were bursting those veins and that’s when things got bloody. Thankfully, once the catheter was removed (after 9 days), the bleeding stopped.
As if that weren’t enough, I was also completely backed up. Like, entire bowel system distended kind of backed up. The nausea, vomiting, and disinterest in food? All because I had no more room inside me for anything else. We started with laxatives. Nothing. Tried suppositories and enemas, minor improvement. Eventually, we had to take more aggressive measures with three full days of GoLytely prep (yes, the colonoscopy stuff) to clear me out.
And slowly… my appetite started to come back. My body felt a little less like it was betraying me.
After 12 long days, I was discharged home. I had follow-ups scheduled with GI and Urology, no catheter, and a new appreciation for wanting to eat again.
But the emotional toll? That was just the beginning.
My body had been crying out for help for weeks, and no one really listened. Not even me. So part of the healing meant starting to forgive myself and figuring out how to rebuild trust with my own body.
See you in Part 3
Next week, I’ll take you through what June brought: another catheter (yes, really), attending a wedding with a Foley in tow (don’t recommend), and starting outpatient PT.
For now, keep on Trekking Through
