The first thing that happened was my stomach became very bloated. Then, I noticed that bile was seeping out of my J port down the sides of my stomach. But, the pain that followed was unbearable!
Each year our extended family on my dad and mom’s side have a family reunion over July 4th week. This year my mom took my younger three siblings. My dad stayed back with me. It was the first night.
Alarmed, I yelled for my dad. Air was entering my J port causing more bloating and discomfort. Cramps intensified in my low stomach which was uncommon since the majority of my stomach pain is more of a burning/shooting pain between my chest and belly button. Generally, my dad has a very calm, laid-back demeanor, yet at this moment seemed concerned and a little anxious. He suggested he might need to take me to the emergency room to better control the pain.
Per usual, I was adamant about not taking this trip. After all, not much can be done to treat a chronic condition in the ER. Currently, my only ‘rescue medicine’ is ketamine, but at my local hospital, it can only be administered under close monitoring in a stepdown unit, not in the ER. The car ride and stimulus to the ER would definitely accelerate my pain. Then, there would be a wait to be seen. And, then we would need to recount the entire complicated history (perhaps a couple of times), which is no 5-minute conversation. And, the dread of encountering medical professionals unaccustomed to treating my condition fills me with anxiety. Therefore, I try very hard to avoid ER/hospital visits unless absolutely necessary.
When I am in this kind of pain, sleep is my friend and Ambien is often my friendly escort to that place. So, this is what I took in hopes that it would knock me out until the pain in my lower abdomen subsided. Unfortunately, just a few hours later I woke up shaking and crying. The intense lower abdominal pain triggered these amplified dysautonomia-like symptoms. My body began convulsing as my temperature swings intensified. Breathing and talking became excruciating and difficult. I was delirious with pain. If you know the type of intense pain I am describing, I am so sorry…my heart breaks for you. It is scary. Part of you wants to die because you just want it to stop and want God to take you to a better place. The other part of you wants to fight through it because you have been there before and made it through to the other side. It’s honestly living hell.
At 1:45 am, my dad carried me into the car and drove me to the emergency room. Although I was the only patient in the ER waiting room, we waited and waited because all the rooms were full. It felt like an eternity as I dry heaved and vomited bile repeatedly. The triage nurse took my vitals as I lay horizontally in my reclined wheelchair sweating, shaking, and gagging. Luckily, my vitals were ‘normal’ but that just meant that I was not deemed an ‘emergency’ and would have to keep waiting.
Finally, I was taken back to a room. The doctor asked my name, but I couldn’t get the words out of my mouth. My mind processed the question, but my mouth just didn’t reply. It just hurt too bad. In this situation, advocating for myself was an impossibility, and I am extremely grateful my dad was there to do this for me.
Due to my opioid-induced hyperalgesia, I am not able to take most pain medications an ER could offer. Opioids no longer provide me with relief and can actually have a damaging effect by increasing the number of pain receptors in my body making me more sensitive to certain painful stimuli. Nevertheless, I was given three consecutive doses of morphine. The ER team that night didn’t know how to help me but didn’t want me to suffer and felt the morphine would put me to sleep. Looking back on this, although the morphine provided no pain relief, I am grateful that it was given so I could be in a more unconscious state. At this moment, I would have done anything to be asleep, even gamble making my hyperalgesia worse by using morphine.
A CT scan with contrast showed that an ovarian cyst had ruptured. The doctor helping seemed shocked that something like this would cause such intense pain. I know they didn’t mean to minimize my pain, but what they likely didn’t realize is that when one has visceral hyperalgesia and there is an increased sensitivity to pain in all the internal organs of the body, a ruptured cyst feels a little like a grenade going off in the intestines.
If you feel like your suffering/chronic pain is minimized, dismissed, or even mocked, please know that you’re not alone, and I truly emphasize with you. People who minimize the suffering of others likely just do not understand because they have never felt it or had someone they loved live it. It doesn’t mean it’s not real or ‘in your head.’ Through this journey, I have encountered many doctors who dismiss me because my case doesn’t fit into a mainstream diagnosis, but there are a few extremely dedicated doctors that have made a huge impact on my life. I’ll never forget them. If you don’t have a doctor like this, keep looking, they are out there. Although common, medical gaslighting is not acceptable!
After nearly 12 hours in the emergency room, the ER team organized a ‘game plan’, and I was admitted to an ICU step-down unit to be put on a ketamine drip. When administer, ketamine is placed in a locked box and two nurses must check the dosing to avoid mistakes. For good reasons, it can not be administered in a normal hospital room. Ketamine is a non-opioid dissociative anesthesia. In the 70s, it was actually commonly used on horses! In the past, it has been a miracle med for me and was again at that time. It took a while, but eventually, it took the edge off the pain.
As mentioned previously, the rest of my family was at my extended family reunion in Big Canoe, Georgia. I have spent the 4th of July week in Big Canoe with my cousins for as long as I can remember, so it was a bit emotional to miss this reunion. My dad waited to tell my mom about the situation until she woke up Saturday morning. He knew if he called her in the middle of the night, she would have gotten in the car and driven to MUSC. It was a six-hour drive and she was already running off fumes as it was. When she heard that I was in the hospital, she and my grandma Millie immediately got in the car to drive to me. My mom understands that I refuse to go to the hospital unless something is REALLY bad so she panicked. We all have a bit of medical trauma from the past two years.
She and Millie came to my hospital room that night and despite the painful tears, they managed to bring a weak smile to my face. Knowing that people who love and care about me were there, eased my anxiety significantly. I knew that they would advocate for me no matter what. This is a gift that I never want to take for granted.