Chapter 1: A Return to the Hospital

Midday on Wednesday, I found myself back in the hospital, feeling utterly exhausted and ill. I was plagued by relentless vomiting and struggled to move—whether it was from the floor, the bathtub, or even the car. I have a pelvic ultrasound scheduled for October 3rd to assess a 4cm hemorrhagic ovarian cyst. I plan to update my rheumatologist on October 6th, followed by a visit to a urologist on October 10th to investigate hematuria and albuminuria, along with further examination of kidney stones. Additionally, I will be consulting with my surgeon to plan a gastric emptying study and discuss potential treatments like valve stretching and alcohol nerve injections. A new gastroenterologist appointment is also on the horizon, once I can secure a time slot.

The upside is that this hospital visit was surprisingly positive. It was an emotional experience for me, as I was treated with genuine humanity. Arriving in a state of distress, I was the one in the waiting area, visibly struggling and in pain. The emergency room was challenging, with discomfort making it hard to find relief. Thankfully, my history with a rare syndrome led to more understanding care this time. My memories from the visit are hazy, but I distinctly recall the startled expressions of the staff witnessing my condition. Experiencing severe vomiting can be utterly overwhelming, and the dehydration it brings is daunting. You can feel as though you are on the brink of death, wishing for relief.

A visual representation of the struggles faced during hospital visits.

Chapter 2: A Shift in Treatment

Previously, my hospital stays have often involved negative interactions. I’ve been treated dismissively, as if my symptoms were exaggerated or even imagined, despite battling serious conditions such as systemic Lyme disease and Superior Mesenteric Artery Syndrome (SMAS). It took years to reach this point, but this time, the experience was markedly better, and I will delve into that shortly.

Reflecting on past hospital experiences and the need for compassionate care.

At my first hair appointment post-duodenojejunostomy, I realized how much I tend to underreact to pain. Following major surgery, I opted to bleach my hair—embracing my snowy locks, reminiscent of my grandmother's striking white hair by the age of fifty.

Embracing changes in appearance post-surgery.

In my eagerness, I washed my hair before the appointment without using conditioner, resulting in a greasy mess. I completely forgot about my appointment until the last minute. As I hurriedly prepared, I didn’t anticipate the pain that would follow during the bleaching process. Despite the burning sensation on my scalp, I tried to downplay it, but it quickly escalated into unbearable discomfort. My stylist, who has known me for years, didn’t realize the extent of my distress when I mentioned the pain.

This experience made me reflect on how I communicate my pain, often underplaying it until it reaches a critical point. The pain scale can be particularly frustrating for me; I rarely express my discomfort vocally unless it becomes unbearable. I find myself accommodating doctors' needs during examinations, even when in pain.

Understanding the pain scale and personal experiences with pain.

Chapter 3: A Life-Altering Diagnosis

Dr. Bhoyrul changed my perspective on my health by diagnosing me with SMAS. He now suspects I may also have gastroparesis due to my episodes of vomiting undigested food. This visit was special, as the nursing staff treated me with kindness, making me feel valued and respected. The care I received felt more like a familial embrace, and I left feeling deeply appreciated.

I had a difficult time with the IV insertion this visit, requiring an ultrasound to locate a vein. Just before my discharge, Penny had her stitches removed. Although my stay lasted only two nights and three days, I left with a sense of being welcomed, valued, and loved. These are the kinds of interactions that restore my faith in humanity, and they are essential for us all.

Celebrating the importance of compassionate interactions in healthcare.