Original Post Date: January 1, 2020
I’ve been trying to pick a punny line to introduce this post because I feel awkward talking about myself… “here’s the sitch”-Kim Possible, “the story of my liiiiife”-one direction, “this is a story about a girl”-Britney Spears…. but I decided not to and instead just awkwardly list everything that went through my mind…
We had started a “Biggest Loser” challenge at work. While at work, I started having stomach pains, that I thought could be from my belt. I shrugged it off, assuming it was gas or cramps. Come Wednesday night (after a stressful day), the pains grew to an unbearable amount.
I did yoga… I went for a walk… I took a bath. The pain persisted. I was so confused-how on EARTH could I have such bad pain and what the heck…
(there are R rated words I could use, but I’m going to keep it classy & G rated)
…was wrong with me? After attempting to sleep it off, my Mom and I went to the emergency room and waited for what seemed like hours upon hours. I was shaking I was in such bad pain. Hours later, I had all the tests, morphine, IV fluids and more. The only outcome- I was constipated and they didn’t really know why I was in such bad pain. So they sent me home.
On Thursday, there were no improvements, I had started throwing up and the whole ER ordeal repeated itself…
On Friday, I called my PCP and she thankfully was able to see me. With one look at me, she knew I wasn’t right and got me a room at the hospital.
They treated me for constipation. I was made NPO (couldn’t eat), which was the weirdest thing as I had worked with patients that had been NPO. In the mean time, I had X-rays and tests done that didn’t seem to show anything.
On Sunday, it seemed like there was a rush of people in my room. They said my sodium was crashing and that it put me as risks for seizures and other issues. They wanted me to go the ICU because I would need close monitoring with an IV of sodium (too much sodium too fast can cause brain swelling).
My sodium continued to decrease, and other levels (magnesium and potassium) decreased too. I started having a very high heart rate at times. I ignored it, thinking it was anxiety. When it kept happening, I told the doctor and had a heart rate monitor which confirmed the tachycardia.
*insert more R rated swears here*
Eventually I got a room in the ICU. The staff was so nice.. a physician’s assistant even brought me bacon and home fries from the cafeteria because I was probably the only patient in the hospital who needed more sodium.
We’d see rises in the sodium, then it would fall. I was allowed to eat, but could only drink 500 mL a day. This was AWFUL. (I ate so many grapes because they were juicy and it felt like drinking a cup of juice)
Doctors still had no idea what was going on and there were no answers from tests & scans I had done. I started having bad blood pressure on top of everything else.
The only possible explanation was that my medication for my anxiety caused my sodium levels to fall. I had been on this for over a year-why was it causing this problem now?!
A fellow came in and told me they were going to test me for a rare genetic disorder (so rare and unlikely that he wouldn’t even tell me the name of it).
He also told me to take a walk around the unit, and to look around and feel grateful for the state I was in compared to the other patients. Yes I wasn’t nearly as sick or hurt as these others- but who on earth says this?! I had maintained my cool the whole time I was in the hospital, but this made me furious. How dare you use someone else’s pain to make me feel less bad about my own pain?
I was finally discharged on Friday afternoon. I went home with instructions to take certain medications and appointments to make. Honestly, I went home with the same problems I started with, just less severe.
A week later, my doctor called. My urine tested positive for a high number of porphobilinogens, which suggested I had Acute Intermittent Porphyria. I wrote everything down so calmly, not at all comprehending how serious any of this was.
It hit me later as I went to bed- I had genetic disorder that would never go away. I didn’t know how my life would change, but I knew it wouldn’t be the same. And on top of all this, I felt guilty thinking “I shouldn’t be upset, it’s not like I have cancer. I’ll be fine.” Yet, I couldn’t shake the notion that it wasn’t going to be an easy path.
My family reassured me that was I strong and would not have to go through anything alone. (I’m so so so so blessed).