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.