2016 Reading List Update

Note: In 2016 all the books I read will be written by women, about women (either fictional or non-).

Currently reading:
Whipping Girl: A Transsexual Woman on Sexism and the Scapegoating of Femininity by Julia Serano
The Witches: Salem, 1692 by Stacy Schiff


Read:
Welcome to Night Vale by Joseph Fink & Jeffrey Cranor (I started reading this before 2015 ended so it’s grandfathered in here. At least the two main characters are women, even if it was written by men.)
I am Malala by Malala Yousafzai and Christina Lamb
I Can Barely Take Care of Myself: Tales from a Happy Life Without Kids by Jen Kirkman
Inferno: A Poet’s Novel by Eileen Myles
Liar, Temptress, Soldier, Spy: Four Women Undercover in the Civil War by Karen Abbott
Sisters in Law: How Sandra Day O’Connor and Ruth Bader Ginsburg Went to the Supreme Court and Changed the World by Linda Hirshman
Negroland: A Memoir by Margo Jefferson
Girl Waits With Gun by Amy Stewart

2016 Reading List Update

It went from bad to worse.

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.

It went from bad to worse.

it shouldn’t be this difficult

I started a new job in January. My insurance coverage didn’t take effect until April 1st. I take Humira twice a month for my Crohn’s and I still had two injections left, but I should’ve set things in motion for my prescription transfer sooner than I did. Because now I haven’t had any for 6 weeks, and I’m feeling it.

The first thing I noticed was the joint pain — which is not impossible, even when I’m on my meds. One of my finger joints might blow up for a day or two, no biggie.  This weekend it became more of a generalized achy-ness, like I was coming down with the flu. But not exactly the flu — there was also a weird feeling of agitation and restlessness combined with lethargy and lack of motivation for just about anything. Sitting still and feeling like I’m vibrating at the same time.

I couldn’t put my finger on it until I realized oh right, I haven’t had a Humira injection for 6 weeks, because I don’t FUCKING HAVE ANY. Because it took a month to get through the insurance bureaucracy to prove that I needed it, even though I’ve been taking it for seven years. I had to start all over with a new insurance company (actually the same insurance company but that doesn’t matter because new employer/new plan means all my previous history is irrelevant unless they can use it against me, I suppose), a new pharmacy, a new specialty pharmacy (because some drugs are more special than others, and by special I mean HELLA EXPENSIVE) and prior authorizations and back and forth.

They called me on Friday to tell me everything had been approved so they needed to schedule a delivery time — I can’t just go to the drugstore and pick it up. It’s specialness requires it to be shipped overnight. Naturally I was unable to answer the call because I had the nerve to be away from my phone and didn’t get the voicemail until after they had closed for the night on a holiday weekend. Yay!

I called first thing this morning and my medication should be arriving tomorrow. We shall see. I feel like a junkie waiting for a fix.

As health care access problems in the United States go, this is pretty small potatoes, but just one example of its general pain-in-the-ass-ness.

 

it shouldn’t be this difficult

I’ve been walking a lot lately.

Now that the weather has been consistently nice, I’m trying to do more walking. My weight loss has hit a hard plateau, and it needs a kickstart.

Most days I take the bus to and from work. This involves two bus rides each way, a short ride and long one. Lately if the timing is right I’ve been bypassing the short ride and walking the mile to where I catch the bus that makes up the other 85% of my commute. I used to allow 20 minutes for that walk, but now I’m closer to 15 minutes.

If I have time, I might go for a walk at lunch. A mile away from the office, then a mile back. For some reason I can do that first mile in 10-11 minutes (because I’m going away from work? Maybe.) But then that mile back takes me a lot longer, closer to 15 or 16 minutes. I guess I’m blowing through all my energy in the first mile and I can’t keep up the pace.

On a good day, I leave work around 7:30. Most of the time there’s a bus coming in a few minutes, and if I hightail it the 3 blocks to the bus stop I can catch it. The next one might not come for another 20 minutes at that time of night. Lately I haven’t been rushing to catch that first bus. I just start walking. I follow the bus route, and keep walking until the next bus catches up with me, which means I end up walking about 2.5 miles most of the time.

Tonight I was feeling kind of tired though. My ankles are aching. I’m having some on-and-off Crohn’s-related joint pain. So I got on the bus, and took it all the way to where I transfer to the second bus for the rest of the trip home. But there was no bus coming for 27 minutes — more than enough time to walk the rest of the way home. So I put my headphones on and started walking.

A few blocks in, it started to sprinkle. But I kept going. Then it started raining a little harder. I had no umbrella, no jacket, no hat or hood or anything. But I kept walking. What were my alternatives? Stand under an awning or in a doorway until it stopped? Maybe, but who knows how long that would be. If I wanted to change my mind and wait for the bus, there was no bus shelter. I could’ve gone into a store and waited it out I suppose. But I didn’t. I didn’t want to. I just kept walking. Now there was some thunder and lightning, and the rain intensified again. I did stop in a doorway for a few minutes. I had that weird kind of hyperventilating breathing you get when you step in a cold shower, or a swimming pool that’s not quite as warm as you were expecting it to be. I was pretty well soaked by then. I stood there for a few minutes and let my breathing get back to normal, and then said, “Fuck it,” and stepped back into the water for the last few blocks to home. I’m sure there were people who saw me and wondered what the fuck my problem was, or felt sorry for me, but I really didn’t care. It was not out of sadness or anger or anything negative that I just kept walking. I didn’t want to stand around, I just wanted to go. It’s just water, after all. (yes water coming from the sky over a polluted city, but something’s gonna get you, right?)

When I finally got inside, my clothes, my hair and my bag were dripping wet. My shoes were squishy. I toweled off and changed into my pajamas and experienced that really specific feeling after I’ve been in the water: an oddly pleasant feeling of exhaustion. Of having been cold but now warm and cozy. It’s weird how that works.

If this was a Victorian novel I would wake up tomorrow with pneumonia and die tragically. But it’s not. I’ll just be tired and sore, like I am now.

I’ve been walking a lot lately.

2016 Reading List Update

Note: In 2016 all the books I read will be written by women, about women (either fictional or non-).

Currently reading:
Sisters in Law: How Sandra Day O’Connor and Ruth Bader Ginsburg Went to the Supreme Court and Changed the World by Linda Hirshman
Negroland: A Memoir by Margo Jefferson
Girl Waits With Gun by Amy Stewart

Read:
Welcome to Night Vale by Joseph Fink & Jeffrey Cranor (I started reading this before 2015 ended so it’s grandfathered in here. At least the two main characters are women, even if it was written by men.)
I am Malala by Malala Yousafzai and Christina Lamb
I Can Barely Take Care of Myself: Tales from a Happy Life Without Kids by Jen Kirkman
Inferno: A Poet’s Novel by Eileen Myles
Liar, Temptress, Soldier, Spy: Four Women Undercover in the Civil War by Karen Abbott

2016 Reading List Update

2016 Reading List Update

Note: In 2016 all the books I read will be written by women, about women (either fictional or non-).

Currently reading:
Inferno: A Poet’s Novel by Eileen Myles
Sisters in Law: How Sandra Day O’Connor and Ruth Bader Ginsburg Went to the Supreme Court and Changed the World by Linda Hirshman
Liar, Temptress, Soldier, Spy: Four Women Undercover in the Civil War by Karen Abbott

Read:
Welcome to Night Vale by Joseph Fink & Jeffrey Cranor (I started reading this before 2015 ended so it’s grandfathered in here. At least the two main characters are women, even if it was written by men.)
I am Malala by Malala Yousafzai and Christina Lamb
I Can Barely Take Care of Myself: Tales from a Happy Life Without Kids by Jen Kirkman

 

2016 Reading List Update

2015 Reading List – The Final Update

Currently reading:
Welcome to Night Vale by Joseph Fink & Jeffrey Cranor
I am Malala by Malala Yousafzai and Christina Lamb

Read:
Countdown City: The Last Policeman Book II  by Ben H. Winters
Fodor’s Italy 2013
Italy 2013 by Rick Steves
Carsick by John Waters
It’s So Easy (and other lies) by Duff McKagan
World of Trouble: The Last Policeman Book III  by Ben H. Winters
The Black Banners: Inside the Hunt for Al-Qaeda by Ali H. Soufan
The Judgment of Paris: The Revolutionary Decade That Gave the World Impressionism by Ross King
Men Explain Things to Me by Rebecca Solnit
Them: Adventures with Extremists by Jon Ronson
The House of Medici: Its Rise and Fall by Christopher Hibbert
2001: A Space Odyssey by Arthur C. Clarke
The Secret History of Wonder Woman by Jill Lepore
Moriarty by Anthony Horowitz
England’s Dreaming: Anarchy, Sex Pistols, Punk Rock, and Beyond by Jon Savage
Chasing Aphrodite: The Hunt for Looted Antiquities at the World’s Richest Museum by Jason Felch and Ralph Frammolino
The Martian by Andy Weir
It’s Only Rock ‘N Roll: 30 Years Married to a Rolling Stone by Jo Wood

****

As 2016 begins, I’ve decided that all the books I read this coming year will be written by women, about women (either fictional or non-).

2015 Reading List – The Final Update