Musings of an Itchy Insomniac

I try to keep this blog lighthearted, so many of you probably don’t realize that although I joke about things like my itchiness and hospital stays, I actually often feel very discouraged and sad. The past week and a half has been extremely challenging because I’ve been experiencing constant itching resulting from unexplained liver problems, specifically high bile acids. The itching interferes with my thinking, sleeping, eating, working, and pretty much all other aspects of life, and sometimes makes me feel like I’m going insane.

I don’t understand why this is happening on top of everything else, and I question “why me?” just like anyone would. I’ve had quite a few “breakdowns” over the past few days and have felt pretty angry at God. I’ve grown up going to church and always trying to do the right thing, so it’s easy for me to know all the right answers and the things I’m “supposed” to feel or not feel, but that’s not what’s real. What’s real is that I’m not giving up, but I’m having a really hard time right now.

Talking to Zack, my mom, and a few friends and reading some scriptures my friend emailed me have helped the most. I haven’t prayed much during all of this, partly because I’m often so itchy that it’s hard to sit still for more than a few minutes at a time, but also because, in my anger at God, I don’t want to. Over the past couple days, I’ve tried to be honest with God about how I feel and how frustrated I am about this itchiness that won’t go away, but it’s been so hard! Here are a couple of the scriptures that gave me hope:

Psalm 62:1 (MSG)God, the one and only---I'll wait as long as he says. Everything I need comes from him, so why not? He's solid rock under my feet, breathing room for my soul, An impregnable castle: I'm set for life.

Psalm 61:2-3 (AMP)From the end of the earth will I cry to You, when my heart is overwhelmed and fainting; lead me to the rock that is higher than I yes, a rock that is too high for me. For You have been a shelter and a refuge for me, a strong tower against the adversary.

So there it is. No answers or funny stories, just me letting you know how much I’m struggling at the moment. I greatly appreciate those of you who are praying and having faith for me, even when I lack faith for myself.

Room Service at LPCH??

About six months or so ago, Stanford and LPCH announced they were revamping their food service system. A couple months ago, that system went into effect, and last week when I was admitted for a skin infection, I had the opportunity to experience the new food service for the first time. I’m pleased to inform you that the quality and variety of the food has improved, though the system has some definite flaws.

The new dining service is called “At Your Request” and is being advertised as “room service” for patients. Next thing you know, they’ll be selling empty beds on Priceline and expecting us to tip the nurses. But on a serious note, the new system is (in theory) pretty cool. You can order meals by calling the food service number anytime between the hours of 7 am and 8 pm, and the food selection is significantly expanded. Some new and improved menu choices? The Asian stir fry, deli sandwiches (with avocado!), chicken enchiladas, whole wheat penne with pesto, and flat iron steak, to name a few.

Sounds like a dream, right? Well, there are more than a few downsides. First and most importantly, the ordering process is extremely vague, and the rules and limitations of the system seem to vary depending on who you talk to. Another downside is that it takes approximately an hour to receive your food, and a couple times it took about an hour and a half. So basically, if the thought even crosses your mind that you might possibly be the slightest bit hungry within the next two hours, order immediately. Kinda like those girls who plan their wedding before they have a boyfriend (if you don’t know what I’m talking about, watch an episode of “Say Yes to the Dress” on TLC).

Being the frugal, crafty person that I am, I decided that if they were going to design and implement a vague system, I was going to test the boundaries of that system. In other words, order vast quantities of food. Hey, it’s not my fault the menu fails to list the maximum number of items a patient can order. The first night of my hospital stay, Zack was with me as usual and my dad was coming to visit, so I ordered the following: green salad, flat iron steak, shrimp stir fry, brown rice, whole wheat penne with pesto and grilled chicken, green beans, a baked potato with sour cream and butter, angel food cake, custard, Sun Chips, gummy bears, two cranberry juices, and a grape juice. We thoroughly enjoyed (and, might I add, finished) our feast and prepared to do the same the next night.

But before any of you start scheduling surgeries and faking illnesses in order to save a few bucks on groceries (in this economy, who could blame you?), I’m sad to report that Stanford quickly wised up to those of us manipulating the system. On the third day of my stay, the woman who took my order wouldn’t even let me order a baked potato with my hot dog and steak, citing the lame excuse of there not being “enough room on the tray.” Most people would give up at this point, but not me. I literally negotiated with the woman for 10 minutes before she finally agreed to send me a half-order of the rosemary roasted potatoes instead. They were delicious :).

Conspiracy Theory

During my most recent hospital admission, I became convinced that my nurses were scheming against me. This theory began taking shape in my mind after I started IV antibiotics, which, unfortunately, almost always cause diarrhea. Sorry if this is TMI, but my sense of privacy is a little dull after being in the hospital. Privacy in a hospital is like snow in San Jose...not gonna happen. When I began experiencing this aforementioned side effect, I dutifully reported it to my nurses, informing them that I no longer needed the Colace (stool softener) they had been bringing me to counteract the possible constipation caused by my pain meds (seem complicated? Try balancing the side effects of over 20 medications, which is what I’ve been on for the past 8 months). So imagine my surprise when I find the little red Colace pill in my next round of meds! Assuming the nurse forgot or made a careless oversight, I removed the pill and casually reminded her that I definitely didn’t need to "soften my stool" while having diarrhea.

The next day, I was quickly glancing through the vast array of pills I was to take with breakfast when I noticed not one, but TWO Colace pills in my medicine cup! I wasn’t sure whether to be appalled or suspicious, but my mom and I laughed it off, joking about what would have happened had I not caught the nurse’s mistake (definitely TMI). I reminded the nurse again that, having diarrhea, it probably wouldn’t be prudent for me to take the Colace, and she agreed. If the problem had stopped there, I would’ve written it off as one of the small mistakes that are bound to happen in the hospital, especially with a medication list as extensive and complicated as mine. But the Colace continued to show up in my med cup at least TWICE A DAY until my discharge, all while I was reporting daily my ongoing issues with the dreaded D word.

So my conspiracy theory is this: apparently I’m so much fun that the nurses will stoop to pretty low-down, underhanded methods to keep me in-patient. Come on, guys. If you want to hang out, just ask me, but please stop trying to secretly slip me laxatives. That’s just not cool.

It Could Be Lupus...

I used to laugh along with everyone else who watches the popular TV series “House” whenever Dr. House's minions once again suggested lupus as the possible diagnosis for a patient’s varied and puzzling symptoms. I laughed because, in the show at least, lupus never turned out to be the underlying condition, but more importantly because few House fans, including myself, or few people for that matter, know enough about lupus to understand the devastating, lifelong impact that diagnosis can have on a person’s life. That is, until I began developing my own set of random and complex symptoms last year and witnessed firsthand the casual tone and frequency with which doctors suggest serious conditions such as lupus as possible explanations for a patient’s (in this case, my own) issues.

Last week during my latest hospital admission, one doctor from rheumatology came to see me after being consulted to aid in the diagnosis of my puzzling symptoms. Though I appreciated the time she took to read my complicated medical history before seeing me, she began to “think out loud,” tossing around serious autoimmune diseases, such as lupus and rheumatoid arthritis, as possible explanations for my symptoms and musing that although I didn’t fit some of the criteria, I fit others  and it would be worth repeating certain tests and analysis to rule them out. Because I’ve heard this kind of thing so many times from so many doctors (every team/department seems determined to find a disease I have that fits within their area of expertise), her words didn’t affect me as much as they would have last year or even several months ago, but I still felt rather upset.

My advice to doctors in her situation is simple: if you don’t have anything helpful or conclusive to say to a patient, don’t say anything at all. Thinking out loud and mentioning serious, life-altering diseases without any concrete proof only serves to heighten a patient’s anxiety in an already unpleasant and challenging situation. Whether we’re discussing lupus or some other medical condition, my request to medical professionals is this: either rule out lupus or come to me with some cold, hard facts that point to it before you use that word again in my presence. I’m not bitter; I just believe that sometimes doctors need to take a step back from the technical side of their job and reacquaint themselves with their patients’ feelings and experience. Believe me, we can tell the difference between those who do and those who don’t.

Medical Jeopardy

As some of you know, I was discharged from the hospital this afternoon after being admitted last Sunday for severe ankle and elbow pain. Random, I know, but I wouldn’t be true to myself if I didn’t give the doctors something to puzzle over. Admitting me is like playing a round of Medical Jeopardy, with all the teams competing to see who can figure me out the fastest. This time the teams included oncology, stem cell, orthopedics, infectious diseases, and rheumatology, each of which visited me daily and asked me the same questions over and over. Their favorite question, which they asked repeatedly, was if I had experienced any trauma to the affected areas. I had to bite my tongue to stop myself from responding, “Come to think of it, doctor, I did close the car door on my ankle earlier today; do you think that could be causing this pain?” After repeating once again that I had never injured either my elbow or my ankle, one doctor actually had the nerve to ask, “Never, ever?” Did she really think my answer was going to change because she added “ever” to the question? And shouldn’t that worry her if it did?

Fortunately, the doctors were eventually able to diagnose the cause of my pain and treat it, so I’m doing much better. The pain in my left elbow has been persistent but tolerable for the past several weeks but suddenly grew much worse on Sunday, and the pain and redness in my right ankle appeared randomly Saturday night and by Sunday evening was excruciating to the point that I couldn’t walk or move. The pain and redness in my ankle, which spread to various other areas of my body within a few hours of my being admitted, turned out to be a skin infection and got better almost immediately after I started IV antibiotics. The elbow pain is from AVN, or avascular necrosis, which is bone death caused by poor blood supply to the area and commonly occurs from long-term steroid use. Another reason we hate steroids :(. I’m still dealing with some unexplained itching, but I’m glad to be home and hopeful it will go away soon.