But it’s better now.
In my last post I was kvetching about insurance and the difficulty of getting my meds when I needed them. When I woke up the next day, I had a fever of 101. I felt achy and terrible, and I wondered if this was part of withdrawal too? Nothing on the internet indicated that this might happen, but who knows?
I called my doctor. Naturally he was out of the country, so I called the Humira hotline, where they have nurses you can talk to. The Humira nurse told me that the drug really does not have any withdrawal symptoms, aside from the potential return of the Crohn’s symptoms I’m taking it to suppress. It would definitely not cause a fever. So that theory was shot.
I didn’t go to work because I felt so yucky, and I was supposed to go see Louis CK that night, but I didn’t do that either. Bye bye $50. Another thing I didn’t do was take my medication. Because after being without it for weeks (and yes it was finally delivered that day), I couldn’t take it because I had a fever. Since it’s an immunosuppressant you’re not supposed to take it when you’re sick. So I still couldn’t take it.
The next day I felt fine. I went back to work. I still had some joint pain, but no fever. It was strange to have had a fever but no other symptoms, no respiratory stuff, no intestinal stuff. I decided to go ahead and take the Humira on Thursday night, since I hadn’t had a fever for over 24 hours at that point.
Friday I was fine.
Saturday I woke up at 6:00 in the morning, shaking, teeth chattering, and my fever was roaring back. 101.5. I decided I to go to the urgent care clinic, because WTF?
The clinic was wonderfully not busy and I got to see a doctor in less than an hour. He said it was most likely a virus, and he would be reluctant to prescribe antibiotics “just in case” because I have Crohn’s and he wouldn’t want to unnecessarily mess with my gastrointestinal system. But, he said, if your fever goes up to 102 or higher, come back here or go to the ER. Okay.
I went home and crawled back into bed. And then woke up a few hours later, with the shaking and the teeth chattering and GODDAMMIT. This time my temperature was almost 103. Fuck. The clinic was already closed at this point, so I couldn’t go back there.
I called Dan & Mike to ask if they could take me to the ER, and Dan immediately came over and we drove to the ER at Northwestern Memorial.
As Emergency Rooms on Saturday night go, it was pretty mellow. No screaming babies or gunshot wounds. There were a few people there who made me genuinely think, “Wow, I hope they’re going to be okay.” But most people were like me, basically ambulatory and not bleeding, but still, something made them come here. After going through the initial triage process so they could figure out where to put me in the queue, we sat and waited. It was about three hours until they called me.
They put me in a room (on the second level of the ER, which if you have to be in an ER this is pretty nice, I’ll be honest), and let the games begin:
Doctor #1 and a nurse come in & take vitals and I give them the run down of what’s happening. They are also confused by the fever with no other symptoms. They put an IV in me and hook me up to a bag of fluids. Then they take some blood and at some point I will have to pee in a cup. But I’m not ready to do that yet.
Doctor #2 came in and I gave him the run down again. (This all brought back memories from when I was in the hospital several years ago and wanted to have my spiel printed on cards so I could just hand them out instead of having to tell it every time someone new came in.) They seemed extra concerned about my fever because I’m on immunosuppressant drugs.
I finally felt inspired enough to go pee in a cup, and I SPILLED THE GODDAMN THING ALL OVER THE BATHROOM FLOOR. Jesus fuck. Now I’d have to start all over with water-drinking and hope I could squeeze some more out soon.
In the meantime, the Registration lady wheeled her computer cart into my room and took all my insurance info and told me I owe $432 and change for my co-insurance and how did I want to pay for that? I handed over a credit card, but then I wondered what if I didn’t have one? What if I said, “I can’t pay for it.” Would they have kicked me out? Given me a couple Tylenol and sent me on my way? I don’t know. Health care in America, who knows.
Also, everyone thought Dan was my husband because who else would he be? Why would some guy who’s “just a friend” sit with you in the ER all damn night if he didn’t have to? Dan would, because he’s one of the highest quality people in the world.
Eventually, Doctor #3, Boss Lady Doctor came in. (Have I mentioned that every single person who came into my room was insanely good-looking? Like TV-show quality good -looking. It was unsettling.) My initial blood test results showed no infection. I still needed to pee in a cup, and she wanted to have more blood drawn to do cultures, the results of which would not be available for a few days, but she wanted to make sure there was nothing hiding in there. She stressed the fact that the drugs I’m taking could keep my immune system from responding the way another person’s would, and there might indeed be an infection somewhere, but my body wouldn’t necessarily react in the same way. And then she recommended having a spinal tap. UGH.
Initially I did NOT want to do that. Because who wants someone poking needles around your spinal cord? Does anyone? I didn’t agree to it immediately. Cute Boy phlebotomist came in to take more blood, and then I finally got the peeing in a cup thing done successfully. I decided to wait on making a decision until the pee test results came back, so we waited. And it was negative. Nothing.
It was about 2:00 am now, and I decided to let them do the spinal tap, because what if there was something there? What if my body was doing strange things (as it has a long-standing reputation for) and they could find something out now? I was already at the hospital, if something serious was happening let’s just get the ball rolling.
I sent Dan home then, because I knew I would be there for at least another 2 hours and he’d already been supremely patient and supportive plus he might like to get some sleep.
Doctor #1 set me up for the spinal tap. Aside from spreading your legs for a doctor it’s about as vulnerable as you can be. Here is my spine, arguably the most crucial thing in my body. Feel free to jab at me with needles here. And he poked me and poked me and probably because I have too much back fat he couldn’t find the right spot while I was lying on my side. Boss Lady Doctor came in and had a go at it too, but no luck. So they had me sit up and finally had success doing it that way. It was only mildly uncomfortable. Mostly just a weird feeling, being poked there.
Then I had to lie flat on my back for an hour afterwards. I was so tired by then I think I dozed for most of the hour. Then the initial results came back: Negative.
I was relieved, but also anxious because after all that we were back at square one: It’s probably a virus.
I took a cab home from the hospital and got home around 5:00 a.m. I was extremely tired but I couldn’t sleep right away. I made myself some breakfast since I hadn’t eaten much of anything the day before and I was actually hungry.
After that, my fever never went above 99-point-whatever.
Then the headache came. One of the most common after-effects of a spinal tap is a GIANT HEADACHE. It goes away when you’re lying down, but gets worse when you sit or stand up. The worst of it lasted until Friday. That was the first day that I felt GOOD in two weeks — getting over the virus, then getting over the headache.
While I was battling the headache I was also battling my old friend Hypervigilance. I was kind of obsessively taking my temperature, making sure I didn’t have a fever, constantly monitoring the state of my head. Is it worse? Is it better? What if they did something wrong during my spinal tap? What if something else is going wrong? It’s exhausting. I’ve been down this road before, with weird medical problems and my anxious nature doesn’t handle it well.
I felt such a sense of relief on Friday, like a cloud was lifted and I felt like a normal person again. I still have a little bit of a lingering headache, but large portions of the day go by without my even noticing it, so I know I’m on the mend.