When It's Just Not Normal

Somewhere midway through December, I called my GP to ask if I could come in. I was experiencing symptoms of a UTI, something that has happened with me occasionally as long as I can remember. Health care is slow these days, for all of the reasons we read about in the news, and they agreed to see me about a week later, for which I was grateful. I left a sample, and she prescribed me a three day course of antibiotics, just in case.

The culture came back negative, and I went on my way. Only the symptoms didn't go away. So I called again, a week later, asking if I could re-test.

"Your culture came back negative," they told me. "Everything looks normal."

Except it wasn't. I pushed them. My voice may have wavered. I didn't want to go back in for another doctor visit; I just wanted them to re-do my labs. Finally, reluctantly, they agreed. And got another negative culture, which I didn't hear about until I called them to ask about results another week later. Because no news is good news, right?

We went on a short road trip for the holiday break, staying far away from other humans. Symptoms were getting worse. I had to run to the bathroom constantly, was drinking enough water for a small elephant, found myself having to stop and rest frequently because my heart was pounding away at over 100bpm doing the simplest things, like standing in line or walking slowly. One morning, I woke up with a nosebleed. I was scared, and we headed home early.

The day after we got home, I called the GP again, left a message. Hours later, they called me back. Head to the hospital, they said. I felt abandoned, afraid of taking an even greater risk. But I did what they said. Six hours later, I was seen in a crowded, COVID-filled ER, where beds lined the hallways. They took my blood, took a sample, ran an EKG. Normal, they said, and gave me a 7 day antibiotic, just in case it was a UTI.

I went for a follow up to my GP, described my worsening symptoms. Palpitations. Loss of appetite. Back pain. She was distracted; she asked me questions that I'd just answered, ran me around the office hallway, impatiently trying to recreate the palpitations I was describing. I tried to explain that there were so many symptoms. She told me she had four more patients waiting. "Maybe it will just resolve on its own," she said, shrugging. Because all of my bloodwork came back normal. When I called again, they ordered an ultrasound, just in case, which I couldn't schedule for another week and a half, because the hospital is so busy and short staffed.

Another week went by. I couldn't eat. I called the doctor again, feeling guilty for doing so. She listened, hesitated. "Should I be prescribing you an anxiety med?" said the doctor. "Are you feeling anxious?" "I don't even know any more," I replied. Yes, I am anxious. About my health.

Things got worse. A strange, sour taste in my mouth after eating. My stomach growling and gurgling. Unquenchable thirst. Abdominal pain. A fear of straying too far from the bathroom. Urine that looked like water. Palpitations. I kept telling myself it was all normal, like they said. But I was also googling, and the things I were turning up said kidney failure. I was trying not to let anxiety compound what I was already feeling.

The ultrasound got postponed, because of "a change in scheduling" at the hospital. Another week.

On Martin Luther King day, I called them again. I left another message, told them I was worried, wanted guidance. I went to a Day of Service with my kids, kept my phone on loud so I could hear the ring. It never came. And towards the end of the morning, I couldn't get enough air. I told my kids as calmly as I could that we were going home a little early. My husband drove me to the ER, for the second time in three weeks.

Another ER, another five hours. More bloodwork. A chest x-ray, which is what they do when you complain about shortness of breath. A COVID test, which I knew would come back negative. All normal, they said. Or at least, this doctor said, in a way that felt almost angry, "sometimes the ER can't find the answer."

So who does, I wondered to my husband, on the way home? Whose job is it to help me feel better? To figure out what's wrong? Why am I in the position of trying to diagnose myself, when I am not qualified to do so?

There in the ER, I began thinking about the people who would care for my kids if I die. Not my husband, but the larger village. The people who would help my son figure out college, teach him to drive. The women who would be there for my daughter's first period. The people she could invite to her dance recitals, who would stand in together to be some semblance of what I would have wanted to be. I began thinking of all of the things I haven't done with my kids yet. The trips I wanted to take with them. The milestones I want to celebrate. I felt overwhelmed with grief. I’ve worried for fifteen years about losing them. Crazy, irrational fear, maybe, but I know that loss is possible. The thought of leaving them before I gave them everything I wanted to give them was too much.

A few days after I got home from the ER, the doctor's office called me. Twice. I ignored the first call, feeling despondent. What was the point? I answered the second call. A follow up, they said. I agreed, wondering whether I should try to find another GP, not sure where to go any more.

He ordered more tests. More bloodwork. I’m waiting for those results, feeling hopeless. This morning, I finally had the postponed ultrasound. Which came back…normal. I'm supposed to call a nephrologist, just in case, which will likely be another wait, because things are slow right now, and it's hard to get an appointment with a specialist, or with anyone. And still, no one knows what's wrong. My legs swell by nightfall. My heart pounds away whenever I'm not sitting still. My thirst is unquenchable. I strain to empty my full bladder. My taste buds are all messed up. Some days I don't want to eat. I've lost almost fifteen pounds. And I go to work, and cook dinner, and do the laundry, and act like everything is fine, because I am normal.

Only I'm scared shitless that something is really, really wrong.