hospital adventures

written by alison

We’ll start with a brief history — on Sunday, for the first time in 2 years, the pain kept me up through the night. Even when things got bad, I was able to fall asleep before 1am. I remember seeing 3:50am on the clock this time and then nothing until I woke up at 7:26.

Monday was a day of continued paid and puking my guts out. Again, not normal for my new normal. I get nauseous, and occasionally vomit once. But never like this. Jeff and I made a pledge to go to urgent care if things weren’t better the next day.

I had moments of tolerability but by the time Jeff got home from work, the pain was to the point that all I could say was “I can’t do this anymore.” That hopeless feeling was back thanks to a fire in my spinal cord and nerves throughout my head, a sledgehammer to the base of the skull and ice picks above my eyes. But oddly enough, I had no visible wounds.

We headed to urgent care, like we did just 4 weeks prior. The receptionist had some empathy for me and offered me a bag to hold on to. This round I wasn’t even seen by the triage nurse. Maybe she put a note in my file about what kind of person she thought I was. It’s ok, I’m not a fan of her either. After an hour, a nurse took me back to the exam room where she listened to my life story, took my vitals and left.

After at least 20 minutes, a new nurse popped her head in and knew exactly what I needed. She turned on a lamp behind the exam table so that the room lights could be shut off. Then she got a pillow and propped it behind my head. I was already a fan of her but when she got out an ice pack, I wanted to call her an angel. (Moral of the story? Tell them what you need, cause 1 out of 3 nurses won’t give it to you based on your symptoms.)

When the doctor finally came in, my heart dropped. She barely listened to me talk and every word out of her mouth was about how someone else should be treating me. When she left the room, Jeff said something like “well she wanted nothing to do with you.” After over 2 hours in urgent care, this doctor sent me to the emergency room. Jeff was right.

I cried the entire car ride there. Partly because of the pain, partly because of the severity of where we were going, but mostly because I am shown over and over again how little people know about treating someone dealing with chronic pain. We can talk all about how it’s a business, or there are fakers out there and you can’t be a bleeding heart for everyone that has a story, and I’ll get it. But when it comes down to it, I have a medical history a mile long with repeated urgent care, physical therapy and specialist visits. This is not a hobby of mine.

The nurse that took me in the ER was an angel too. She told me that she wanted me to talk and explain as much as I needed to for her to understand. She asked questions and made sure she was repeating what I was saying correctly in her notes. She addressed and talked to Jeff, something the first 4 medical professionals didn’t. She hooked me up to the monitors, gave me a heat pack and told me to hit the red button if I needed anything.

Not much after that, the doctor came in — he was a good listener too. For the first time since this ordeal started, he said that it sounds like I didn’t have just one type of headache. He explained that I likely had multiple types if not something abnormal beyond pairing cluster, tension and migraines. Then we talked about how new thoughts are that we shouldn’t even classify headaches at all. How things are so subjective and difficult to put in a box. We had a conversation — that felt incredible.

The next step was to get an IV cocktail. The nurse and I chatted about how tattoos don’t really matter to her because she goes by feel — which was something I didn’t know because every other nurse has avoided my sleeve arm since I got it. Before she left the room, I was already comically drowsy. Hurray for fast acting meds!

Shortly before the fluid bag was empty, I started to get super antsy. This happened during my last IV, so I’m pretty sure this is my m.o. — something about not liking being connected to a bag of liquid via a needle. Then when the nurse removed the bag but kept the IV in, I got out of control antsy. I pinged the nurse and told her I needed to move — she put up with me like a champ, got me unhooked to the vitals and told me to roam as much as I needed to.

Honestly, giving this part of the story only a few sentences seems cruel as it felt like the longest 90 minutes of my life. I don’t use this phrase lightly, and truly think it was a mild panic attack. Jeff said all the right things, rubbed my shoulders and put up with me repeating over and over “I need to get out of here. I want to go home.”

All the while, the drugs were doing their part and brought my pain from a 9 to a 5 to a 3. Had I not been freaking the fuck out, I likely would have given it a 2. I told the nurse, who got the doctor’s approval to send me home. Even though it felt like another eternity, they had me paid, prescribed and un-needled within a few minutes. Jeff got me home and in bed, where I promptly passed out until our alarm chimed in the morning.

I’m sitting here with the pain at about a 2. It could be closer to a 1, but I’m nervous to give that much faith in how an ordeal such as last night could improve things. I’ll eat my breakfast and see how things feel by lunchtime.

This process has been a struggle for everyone around me, including me. And one of the most alarming parts is that specialists and folks working in hospitals either don’t know or choose not to treat my invisible condition the way I need them to. I don’t know what it looks like yet, but I can promise you that I will do something about this when I feel better. Be it a book, writing letters, placing phone calls or something I haven’t thought of yet, I have something to say.