The Reckoning

The second time I went to the ER, there was a lot less time between arriving and being admitted. I told every nurse I talked to that I was there one week before. The woman getting my stats was the same woman as the first time. Remember me? What they did for me last time didn’t help, so I’m back for more! I should have taken the ineffectiveness of my first ER trip as a sign, but it’s funny how mundane reasons like “all my medical records are there and it would be a pain to fax them” became deciding factors when it came to choosing my care. It was just easier.

So I got to my ER bed, they set me up with an IV and administered my first dose of IV steroids. I settled in and proceeded to watch some Disney channel cartoons. I figured it was good to lighten the mood. To give you a gauge of what I was going through, in the two or three hours I was laying in the ER bed, I had to get up at least four times to use the restroom. And that bathroom was like the equivalent of one big dirty Band Aid, so I really tried to avoid going back there. I brought some rice from home and ate some while I was waiting to be taken up to my room. Call me a toddler’s mom, but I usually pack a snack, especially with all my dietary needs. I’m glad I did that day; my doctors casually put me on a clear liquid diet for the rest of the night just after I finished nibbling. It was the first of many times those bastards sprung a clear liquid diet on me with no warning. Or worse, an “NPO” – nothing per oral, meaning no food or drink (not even water! They would concede to ice chips if you really needed them. I refused purely on principle).

While I lay there in ye olde Emergency Department watching Phineas and Ferb, next door I listened to someone explain to a patient that, though he had chest palpitations and they could give him medicine for it, the real root cause was the fact that he drank at least six beers each day. I wonder if he got the message.

A few hours later I was taken up to my suite, which I then forth referred to as my hotel room. It was a large two-person room separated by a curtain; standard. I set up shop on the side with the window and my roomie was an elderly Chinese woman accompanied by her husband. At first it sounded like she was being discharged the next morning, but she in fact was ready to go home that night. After lots and lots of medical interpretation over the phone about when to take nitroglycerine tablets, the woman and her husband left around 9pm. I didn’t have another roommate for at least a week.

For how terrible this experience was, there were a few perks that made me appreciate that my situation wasn’t as bad as it could be. On the other hand, it was clear even from my admit date that I would be in the inpatient ward for much longer than the average patient, so maybe I was given consideration. That first night my labs were out being screened for all sorts of virulent diseases and bacterial infections. While they waited for the results, everyone had to err on the side of caution by effectively putting me on quarantine. So there was no chance that I would have gottten a roommate at least during those first few days. When you’re going from zero to sixty in terms of invasion of privacy, having the freedom of my own room made a big difference. I think it was effective planning on the part of the nursing staff that, once all the labs came back negative, they still did not place me with a roommate. Who’d want to share a bathroom with me? They monitored my ‘output’ in a little hat. No one else should have to look at that except the saintly techs that note the volume and flush. Often times I’d have to ring the call button just to tell them to clean the damn thing. A sweet lady voice would come over the loud speaker “How can I assist you today?” “I, uh, went in the hat. Thanks.”

So having my own room was one perk. Now that I’m writing this, it was pretty much the only perk. Oh, and the view. The view from that room was quite nice, overlooking the city and the morning traffic on I-93 S. Everything else was pretty terrible. That first night, around midnight, I woke up to the nurse telling me I needed a blood transfusion. Good Morning! The risks were explained to me, I groggily signed a waiver and laid there nervously pondering the realistic chance that I’d have an adverse reaction. I asked her what are the typical sensations if were to have a bad reaction and she said “you just won’t feel right. You’ll know.” Oh, good! She said it takes some people a while to feel something, others feel it right away. It did feel a little weird, but it was psychosomatic; I couldn’t help but stare at the IV as the bright red opaque solution ticked in with the click of the pump. But all was ok. During the next few hours I was bombarded by people checking in to take my vitals: blood pressure, oxygen saturation, temperature. I always feel so ridiculous when they reach out to put the thermometer in your mouth, like I’m a baby calf about to drink out of a bottle.

Needless to say that first night was a whole lot of no sleep. By the next morning I was hungry, tired, cranky and not really feeling any better physically. But it was nice to feel like I was being taken care of by people paid to do it, as in no longer putting a substantial burden on my boyfriend Andreas.
Speaking of him, that morning, after my 6a dose of prednisone, I fell asleep. I woke up a half hour later to a hand gently brushing mine – I was startled awake to see Andreas sitting by my bed, wearing a gauzy yellow gown that reminded me of a trash bag Missy Elliot would wear. It was absurd. Apparently everyone was supposed to wear these Peep-colored gowns while I was on quarantine. Regardless it was a heart-warming surprise; I definitely did not expect to see good old Dre Day before he went to work, but that’s just one of the many ways he went out of his way to be there for me during that time.

Later that morning I was elated when room service brought me a tray of food. Though it was of the clear liquid diet variety (chicken broth, green jello, hot tea, raspberry sorbet), and though each food contained something on my No list (sugar, gluten, dairy), I ate it all. Or drank, rather.

As with any experience, there’s a learning curve involved. The first week in the hospital was about learning the side effects of IV steroids (they cause immediate diarrhea!), learning what foods on the hospital menu were delicious yet dangerous (the more delicious, the more dangerous), learning what time The Chew comes on each afternoon (1p EST).

Also part of my learning curve was re-learning what pain was. The first time I went to the ER (a week before my inpatient stay began), I had terrible, terrible stomach pain and distension. I remember running across the street to get to a Pho restaurant and the bouncing up and down of my gut caused me to writhe in agony. The 20mg of oral steroids the ER doc sent me home with greatly helped that pain go away, and all I was left with was typical gas, bloating, mild distension all related to digestion. I called all that “discomfort”. By comparison it was not sharp, it was not as immobilizing, it was something I could, for lack of a better word, stomach.

And the discomfort came and went with meals. It didn’t help that pretty much everything on the hospital menu contained gluten. Even if you’re not sensitive to it, it’s a very inflammatory substance. Try eating a gluten free pizza sometime, I guarantee you won’t feel like committing suicide after. Maybe that’s a strong statement, but let’s be honest: most wheat products leave us with some sort of feeling of regret, even if mild. Does anyone feel fucking fantastic after a big pasta meal? No, chances are you want to take a nap. The residual crappiness is because it’s hard for our bodies to digest; undigested gluten stimulates our inflammatory response, if only mild. Add to that the fact that it’s more omnipresent than Massholes at Fenway, and we just don’t even notice it anymore. A recent article in the NY times estimates that 18 million people in the US have some sensitivity to gluten. And the rates of celiac disease are on the rise.

The same goes for cow’s milk and milk by-products – everyone is to some extent lactose intolerant. The hospital food people said the mashed potatoes could be made without milk, so I always specified mashed potatoes “lactose free, no milk”. Unfortunately it took one lunch where I only ate mashed potatoes to realize there was only one recipe, and it always had milk. Like an ass I never questioned the fact that the receipt never noted anything about the mashed potatoes being modified. They had amazing “baked” chicken tenders which of course are breaded and deep fried and then baked, so… most recent cooking method wins! For the hospital being a place where I was supposed to get better, they really did throw me substantial hurdles with the food. All things tasted good going down, then wrecked me about six hours later. I’d crawl into the fetal position, try to sit up in a chair, I’d whimper and suffer through it and still never call it pain.

I’ve had acute pancreatitis, mind you – now that’s pain. I actually think my pancreatits is related to how I got UC, but that’s for another time. I also had a nerve block shot through an artery in my wrist. I think that’s the most pain I was ever in. I’ve also had an IUD put in and I’ve never been pregnant, which equals a lot of pain as well. When nurses on the floor would ask me how much pain I was experiencing on a scale of 1 to 10, I always humbly answered something less than four. That first week I denied I was in any pain at all. Yes, I’m a yogi. Yes, I arguably have good “body awareness”. Yes my perceptions of my body were definitely skewed for a while. But in terms of real, hand-to-God pain, I’ve been to hell, people; I know what I was going through was nowhere near as bad as it could have been. So I told the nurses that I used my own universal pain scale:

PAIN SCALE:
10 – pregnancy (never experienced, only hypothesizing)
9 – nerve block
8 – pancreatitis
7 – IUD implantation
4-5 – UC flare digestive symptoms

Regardless, that first week I was in a lot of pain and didn’t think to ask for anything for it. I learned better soon enough. After a few days I started to get the hang of being my own advocate, but for me it didn’t come naturally. Looking back at those very first days in my suite, besides the constant bathroom breaks and pain, I was beyond fatigued. I mean not just physically, but mentally and emotionally. It’s hard to explain the sentiment that you don’t even want to look at email because it requires too much mental investment. I didn’t feel like returning texts. My phone was too heavy to hold up to my ear for more than a few minutes. Also, steroids can make you quite a crabby little one, and I definitely noticed there were times where I just did not feel like dealing.