What Doesn’t Kill You (Makes You Stronger)

It’s a cheesy pop song, but the sentiment is always a helpful one to keep in mind, and I’ve been listening to this over and over. (I’ve been listening to quite a bit of music lately, as it’s nice to have some other sounds to cover up the whirring of my Kangaroo Joey pump.)

I’ve been writing about my experiences with this illness quite a bit lately, something that a number of family members and friends have encouraged. It provides a record and a way to organize my thoughts and express my feelings. And between my blog and my journal entries, it might become something. It’s perhaps hubristic to  think it at this point, but maybe I’ll write a book about my experience someday. (Writing books seems to be one disease that I have a clear family history of, anyway.)

Here are some (lightly edited) selections from my journal:

11/12/12 (at Cal Pacific, before and after my appointment)

It’s funny, going into this appointment knowing it won’t provide complete answers. At least this way I won’t be disappointed. More progress on the search is always good.

***

I counted and this is my fifth time here, and the fourth in two weeks. Pretty “good” considering we don’t live here.

***

In the waiting room at Dr. Shetler’s office now. It’s funny how they always have you fill out the symptoms sheet — I’m not sure if you’re supposed to put them for currently or in general or ever…? Presumably it would be currently (thought that begs the question of how currently), but it includes symptoms like “ever refused for a blood donation.” I did a sort of mix, I guess. (It’s not like I’ve had a latex reaction since Thursday, but I circled latex sensitivity anyway.)

I feel like I spend about half my life in waiting rooms and I’m still not quite sure what to do in them. Writing a private journal is a kind of odd answer, I suppose, but it’s working. I thought about crochet but I want to be able to get up quickly when they call me. I always feel awkward if the nurse has to wait.

The waiting room has quite a few people, but is quiet. I can hear my pump whir clearly. I think that’s a reason I’ve been playing so much music, and loudly for me. It still bothers me to hear the whirring during the day for some reason, even if I sleep through it easily. I hope the noise doesn’t bother anyone else too much. It’s not very loud, especially for those not right beside me. There’s nothing I can do about it, after all.

Wearing and carrying such a visible sign puts you on edge. You wait for someone to ask what it is. You wait for the stares, especially from children and elderly ladies. And you wait for someone to challenge your carrying a backpack into a store or to question “but you don’t look sick!” — those haven’t come yet, at least, and the latter actually arises far less with the tube than without. There are lots of different kinds of waiting when you’re sick, I’ve discovered, and they extend well beyond the eponymous room.

***

11/13/12 CPMC Pacific Campus GI Lab Waiting Room

So, to sum up yesterday’s appointment:

  • My weight is down a little more = bad (Knew that….)
  • I definitely have a long QT interval
  • Which means I can’t take even more meds…
  • Including ZOFRAN!
  • Also all TCAs and Erithromyacin (Explanatory note: non-GI meds that are used for quirky neurogastroenterological and motility issues, somewhat experimentally)
  • (But if we get desperate, I can go to a cardiologist to see if I can get clearance)
  • I am going to start B. (a med we’re using sort of experimentally) slowly tomorrow
  • I’m supposed to call Thursday’s morning to let her know how it’s going. (Did that)
  • (“You know you’re very sensitive to drugs when….”)
  • Stillsobaffling
  • I need an EGG to see how the electrical currents of my stomach are off…
  • (because they must be)
  • ….so we can see if they match any known patterns…
  • …and how those were treated.
  • She wants to see me more frequently, ie next week. (Tuesday)
  • And for me to have gained TWO pounds by then. (That’s going to be tough unless I start keeping, you know, actual food down.)
  • I’m supposed to try small volumes of food 3x day.
  • Then the idea is to try to work to where I only need the tube for night feeds…
  • …and then not at all!
  • Next week we’ll decide about an antroduodenal manometry test (which is not the same as the Barostat I had, though similar) to check my small bowel function
  • But my response to feedings doesn’t necessarily seem to fit with CIP (Chronic Intestinal Pseudo-Obstruction)
  • (The loose stools are normal)
  • And she’s concerned about radiation exposure
  • (Since I’ve already had quite a bit of it)
  • She’s reluctant to expose me to more if it’s not necessary
  • So, basically, I’m pretty baffling
  • But there are still things we can try
  • We didn’t talk about the paralysis
  • But I think we will next week
  • If only because I plan to bring it up
  • Since that is till in play and needs to be addressed

***

We saw Dr. Shetler as we checked in. She asked how last night went and we told her not fabulously — hard/projectile vomiting followed by an hour of paralysis. Oh, because, yeah, another one of those last night. We think they’re more likely to happen after exhausting days, which yesterday was.

***

It’s funny, but it’s increasingly seeming like it’s not so much that they’re going to find out that I have Disease X or Syndrome Y as that they’re going to discover some new disease in me. And then invent a treatment for me. (I have confidence that they will.)

***

Home

I have no idea how the test went. I watched the little squiggly lines move around – and they certainly moved a lot when I got nauseated — but I have no idea what they mean. Hopefully they do mean something and I’ll find out next week.

(Oh, and I threw up the Glucerna they gave me. Typical.)

***

11/14/12 Home

If it’s not one thing, it’s another.

Ostensibly, most of today was good. After all, I didn’t start vomiting until after dinner, keeping in breakfast, lunch, and afternoon snack p. o. (by mouth), all while tolerating (again, ostensibly) 50(!) ml/hour.

My intake:

1 bowl hot rice cereal (1/4 cup dry cereal cooked in 3/4 cup almond milk; maybe about a tablespoon of maple syrup)

3 TJ’s rice pancakes with raspberry jam.

1 small (6 oz?) bowl pureed soup + 1 rice cake

Jevity 1.2 at 50 ml per hour.

(Hey, look, I’m being all food blogger-y and listing what I ate all day! Sorry no photos, I’m sure you all are just dying to see an SLR shot of Jevity.)

Today was officially the day I started trying some “treatment.” I took 5 mg. B. 30 minutes before breakfast. I kept breakfast down, but I had a stomach ache after — not sure if it were the B. or volume or bolused water or…?

Rest of the morning was uneventful in GI terms.

While I ate breakfast, Mom got a phone call from Dr. Shetler. She talked to a neurologist friend of hers, because she is v. concerned about the paralysis, and he thinks they sound like seizure activity. She asked what kind of neuro care I was getting here (Mom said basically none) so Dr. S. said she was happy to refer me to a doc at CPMC. I got a call later from Pat the nurse at the motility office and she told me they were trying to get me in next week and would let me know on Friday.

I take this all as good news/bad news. Or rather, reassuring news/scary news. I have wondered all along about the projectile vomiting and pointed out that I feel weird before the paralysis sets in — before the vomiting, even, I sometimes have visual changes.

***

So. Dinner. It was a different pureed soup, this time a bit thicker, with more meat and veggies. The texture felt very heavy and filling — my stomach must have shrunken by now — and it was really too much for me to handle. It managed to be unappetizing despite a nice flavor. I didn’t even make it through half a bowl, though I really tried. I felt the need to “wash” the feel a bit and wanted more kcal and taste. I tried about 2 oz. of my dad’s root beer, well stirred to get any bubbles out. It was quite nice as something different.

Went to watch TV in the living room. I started throwing up. Okay, no one’s shocked, especially as I hadn’t been hungry for dinner. Then I started getting bad lower abdominal cramping and had to hurry into the bathroom. Considerably amounts of diarrhea (sorry if this is TMI! but I guess if it is, probably so is the rest of my health-related writing) — not just unformed stool, but progressively more and more watery, like with a virus, food poisoning, etc. Okay. Detached from the pump (couldn’t take it with the cramping.) It continued. Vomited more, got just to stomach juices at some point. According to plan, we got some rehydration in via the tube, but I could only tolerate so much.

***

11/15/12, home

427 ml overnight. Also, I threw up overnight. (Looks — and tasted — like bile.) It took forever to get back to sleep and I had some bizarre dreams.

More diarrhea this morning. And I feel like even more is coming. I’m currently disconnected, but I’ll have to reconnect in a short while. It’s not as bad as throwing up all the time, but the volume is a bit…troubling.

Weight is down. OMG, I have to gain 2.6 pounds by TUESDAY! Hopefully some of yesterday’s loss is just water/hydration loss from last night. This is a new all-time low (for being a grown up and this height and all.) Not good at all…I’m not sure how to reverse things and go in the other direction unless I’m able to eat more (and absorb it.) I don’t know what I’d do without the tube right now.

***

The big question is whether the B. is causing, or aggravating, any of the diarrhea. I’ts certainly not a common side effect from what I’ve seen, but I’m also using it in a weird way for a weird thing…and I just have weird reactions to drugs in general. I guess we’ll talk about this on Tuesday + I have to call the office to check in in a little bit.

—-

So, yeah, it adds up to quite a bit!

In case anyone’s curious, this is my tube and backpack set up. The tube goes from my jejunum (small intestine) up and out my nose and then connects to a line leading to a pump and feed bag in a backpack.

 

In bookish news, I’ve been reading the Montmaray Journals. I think I first saw them mentioned by Claire. A delightfully literate (without being mousy) heroine, princesses who actually do things, fictional royalty and fictional European countries,  late 1930s/1940s in Britain, London, aristocratic Bolsheviks, and siding with the Republic in the Spanish Civil War = right up my alley! I finished the third and final book, The FitzOsbornes At War, last night and am a bit sad to be through the series. I’ll just have to reread!

Grey’s Anatomy has an episode about a patient with Cyclic Vomiting tonight. I don’t usually watch the show, but I’m excited to see it. It should be great for awareness! You should all watch!

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NJ Tube 2: Electric Bluegaloo

From my hospital room at CPMC. See the shiny blue tip?

Um. Suffice it to say that my testing and follow-up appointment on Thursday did not go miraculously well.

Last time I posted, I talked a bit about how I hadn’t been keeping much down following my (pretty uneventful) endoscopy/Barostat/manometry last week. Well, instead of getting better, it got worse. Wednesday I started throwing up in the morning after waking up feeling welling and trying a bit of juice and a (white, low fiber) mini bagel. I kept throwing up through most of the morning. We were set to drive down to San Francisco that afternoon at about one, after my dad finished teaching, which we did. Luckily, I’d stopped throwing up by that point. A while into the drive (it was more than half way — probably about two hours out of what turned out to be a three-ish hour drive), I was feeling better and even a bit hungry. I tried some water and crackers…and spent the rest of the drive throwing up. It got worse that night. For the past week, I had been getting a significant portion of my hydration in at night. I would wake up in the middle of the night several times with my stomach hurting and drink a bit of water before falling back asleep. I probably got about 12 ounces in each night — probably a third or more of my total on the good days. Wednesday night, it didn’t work that way. Instead, I woke up to throw up each time, therefore losing water/hydration through the night.

Thursday morning I had the last of my series of tests: the hydrogen breath test to check for Small Bowel Bacteria Overgrowth.

Waiting for it to begin. I wasn’t feeling fabulously well by this point….

I had to drink 8 oz. of a lactulose and water solution. I threw up about two ounces of it, but the nurse said that the test would still work as long as she re-calculated things to account for the smaller amount of the solution. Basically, this test consisted of my blowing into a bag once before I drank the solution and then every fifteen minutes after drinking for three hours. In between, I played around on my phone, crocheted some, and — to be honest — kind of faded. My mouth kept getting drier and my tongue rufflier as it swelled (a sign of dehydration) and I felt weaker. The test started at 8:00 a. m. and my follow-up appointment was at 11:30 at a different CPMC “campus” 1.4 miles away, so the timing was tight, particularly as I was pretty unsteady walking to and from the car.

I got checked in and was called pretty quickly into the exam room. A nurse took my vitals and my weight — the latter of which was down several pounds from the weight they had from only one week before when I had my endoscopy. Dr. Shetler came in and pretty immediately said that she was probably going to send me to the ER after the appointment. (And when she got my orthostatic blood pressure, that changed to definitely.) She was very concerned about my weight and said that I was extremely underweight and my weight was going in the wrong direction. (Well, I certainly knew that last one!) She decided to have the ER place an NJ tube for now (more on that later) and that we needed to talk seriously about having a surgically placed J-tube. Probably for the next three months.

If you had told me in July that I would be facing a likely J-tube — and surgery to put it in place — I would have been horrified. (If you had told me in May, I think I would have scoffed.) But now? Honestly, I’m pretty resigned to it. I’m not maintaining nutrition consistently on my own. I could say that I was maintaining my weight after getting the last NJ tube out, and if you looked at my weights at doctors’ office visits, you would think that was the case. (Hey, there was even one visit, at 7:30 p. m. after dinner and wearing a heavy sweater and shoes where I looked like I was up.) And I was and I wasn’t. Because there were at least three times where my weight dipped down three or so pounds (which is huge for me) and those set backs meant that I could never make any progress forward. And now this last week (and a half, now)? It’s been one giant slide downhill…one that I simply can’t afford. This isn’t a nice problem to have, like some might view unintended weight loss. This is staring down surgery, this is eating via some kind of a tube, this is part of my digestive tract failing me. And so if a J-tube can help? And is better for longer-term use than the NJ? Bring it on.

We also talked about the test results. Here’s a quick summary:

I don’t have…

  • Any kind of esophogeal problem (presumably including GERD, Eosinophilic Eosophagitis, Rumination Syndrome, etc.)
  • Gastroparesis or delayed stomach emptying
  • H. Pylori or other stomach “bugs”
  • Celiac Disease
  • Ulcers (including Crohn’s, I think)
  • Small Bowel Bacteria Overgrowth
  • Visceral Hypersensitivity
  • Much of a problem with my stomach muscles relaxing to accept food (I threw up during this part of the test before all data was collected, so it’s possible that there’s a slight malfunction and my doctor plans to treat accordingly, but before I threw up everything was going well and after when they gave me Imitrex my muscles relaxed beautifully, so it doesn’t seem like it can explain things.)

There’s a certain point at which negative test results stop being good news.

What about Cyclic Vomiting, as I’ve been talking about, you might ask? Dr. Shetler mentioned that while, in some ways, I look like a cylic vomiter, my “episodes” are happening way, way, way too frequently/close together for that to really fit.

She said that she wanted to see me again on Monday to start running more tests and doing some drug trials. She talked about starting me on one medication, which helps the stomach relax, and another, which is used for a whole bunch of different neurogastroenterological issues, including cyclic vomiting/migraine prophylaxis and visceral hypersensitivity and some motility issues. We talked about side effects a bit — the first one is pretty safe and the second can have some cardiac(!) side effects, so she said she’d have the ER do an EKG. It can also make people in my age group suicidal(!), so she asked me some screening questions, but she thought I’d be okay since I don’t have a history of depression or suicidal tendencies and I have super involved parents who can monitor. I’m not sure exactly which tests I’ll have — something about an electrogastrogram (“It won’t give a diagnosis, but it will give more data”) and some kind of small intestine studies. (I’m not sure if those are imaging or motility or….?)

She did a quick exam of my abdomen and didn’t really find anything, except that I was too thin. I told her that I thought I might be constipated because (sorry if this is TMI!) I’d been having a little bit of watery stool I thought might be leaking around an impaction, but she said she thought it was just that I hadn’t, you know, eaten. (She was right, as it turned out. Reasons not to Google your symptoms?) She then called a wheelchair to take me from the outpatient clinic over to the ER, which was on the same campus. It turned out to be my transport guy from last week! He took me down underground and in through the back of the ER.

In the ER, they drew a bunch of blood, got me started on IV fluids, and gave me Zofran. My ER doctor was a really cool guy, who was great at dealing with the crazy situation I was in — they couldn’t decide whether or not to admit me for the night and were having a ton of problems getting the stuff done that they needed to. I got hooked up to an EKG (my first ever, we realized) and then a couple of nurses came to put an NG (yes, nasogastric) tube in me. I couldn’t figure out why they were doing it until after it was done and they hooked me up to a suction thing — they were decompressing my stomach (taking out air and stomach juices and such) so that it felt better. They tried going in through my right nostril first and stopped when it started bleeding. They got it in my left nostril much more easily — and told me that  those tube placements were there least favorite thing to do, though I handled it relatively well. The ER doctor came back and explained that they were trying to get me into interventional radiology for an NJ tube placement, since they couldn’t send me home with the relatively unsecured NG tube that I couldn’t be fed through and they’d know within the hour.

I got in and went to get the lovely tube you see in the top picture. The interventional radiologist and the tech were arguing about how to take the tape securing my NG tube off. I, ah, solved the dilemma by reaching up and ripping off the tape. Hey, it’s not like I haven’t done this before! The NJ tube placement went super smoothly this time and only took a couple of minutes (I think my pyloric valve was more cooperative on Thursday than it was back in August. Plus, they used an even thinner tube.) I actually kept smiling through the procedure. The intervention radiologist said that it was clear that this wasn’t my first time and that he was sorry about that but that I handled it incredibly well.

Back in the ER, I got my EKG results. So, after aaaaaaall the negative GI tests, do you know what I got a “positive” result for? Yep, the EKG. Apparently I have some kind of slight arrhythmia that’s just barely significant enough that I might not be able to take the medication that I was going to be prescribed and that might help. 😦 (It’s also possible that I might be able to take it and just have frequent EKG monitoring…I don’t know yet, I’m sure it’s going to be part of my discussion tomorrow.) Kind of frustrating.

Long story short, I ended up getting admitted for the night because they couldn’t get me a pump to use with my NJ tube and I was still throwing up and they couldn’t send me home unable to eat or drink. I moved upstairs and got some more IV fluids and Zofran and a visit from the hospitalist who specializes in GI patients. (But is not a GI doctor…clear as mud?) We went through my whole history, starting from when I was eleven (we’re getting pretty good at that) and listing the things I’ve been tested for and all of that. Oh, and all the drugs I’ve tried and had bad reactions to. (Seriously, we’re basically anti-emetic experts at this point. To date: Domperidone, Scopalmine, Reglan, Dramamine, Phenargan, Zofran, Ativan…With bad reactions to Domperidone, Scopalmine, Benadryl, and semi-bad to Reglan….) My dad asked if she had any suggestions on what it could be. Her answer: “By the time you’ve reached the neurogastroenterologists, internal medicine usually can’t do much.” 😦 She did order a heavy metal panel of bloodwork for the next morning and suggest possibly a brain MRI to Dr. Shetler.

View from my room — my roommate very kindly let me come over to look and take a picture.

The next morning, I met with the morning hospitalist who told us that the case managers were still working on getting me a pump. Disadvantages of living in a non-urban area: there’s only one infusion company and it’s the “slow” one and it has shortish hours in our area. But thankfully it came through in the end and got me a new Kangaroo Joey at 6:30 on Friday evening. A registered dietitian also came by. She was pretty awesome. 🙂 We explained that I’d had a hard time tolerating feeds greater than 50-55 milliliters per hour and found it impossible to handle feeds at 70 milliliters an hour. Since I had done well with Jevity 1.2 in the past, and they prefer to keep you on a formula if you tolerate it, she figured out a calculation that would work with those limits. It does mean 24 (or pretty close to that) feeding if I’m not getting much in by mouth. (Plus an additional shot of Beneprotein, either by mouth or in the pump.) She also calculated fluid needs, which was really helpful — when we did 24 hour feeding before, we had no idea what to do as far as fluid. This time, I have a snazzy backpack from the infusion company so I’m not confined to where I can push my IV pole around during the day. 🙂

ALL THE hospital bracelets. and yes, they gave me two allergy ones….

I was discharged in the early afternoon and we hurried home (through increased traffic, sigh) to meet the pump. I started tube feeding Friday night and I’ve been continuing it since (with breaks for showers and to change bags, etc.) I even went out briefly with the bag yesterday afternoon, but mostly I’m taking it easy. I’m doing some clear liquids — Jello, white grape juice, and chicken broth with Beneprotein. (Each can has 32 scoops and my primary care doctor — whom I guess the CPMC docs contacted to write the prescription — wrote it for 99 refills. Love her, though I certainly hope I don’t need supplemental feeding that long!) I’m not really sure if I’m supposed to advance my diet further and I had a bit of upset last night, so I’m sticking to that for now. I might try some pureed soup later today….Probably a good idea since my weight is down further….:(

When it comes down to it, I’m still waiting for answers. If anyone has them, I’ll certainly take them!

Scope Me Baby, One More Time

(Hey, it’s better than Schlag mich Baby, noch einmal, right? Right? A little bit at least?)

I made it through the first round of testing in San Francisco! I survived my second endoscopy, without any crazy improbable drug reactions!

Like I posted before, I had my gastric emptying study on Wednesday. I ate the radioactive eggs and drank the nuclear water and it all left me stomach in a timely fashion according to the estimates. We don’t have official numbers from the radiologist yet, but my gastroenterologist said they looked good, though were subject to change. And I didn’t throw up during the test, which is the key thing.

In a way, we didn’t really learn much from that test. I’d had one before in Chico, though it hadn’t measured liquids, and it looks like the numbers are going to end up right around the same as they did in that test. But we will have ruled something really important out: gastroparesis. A girl in my town had gastroparesis and she ended up having to get botox shots in her stomach (in Ohio, because she was under 18 and not many places treat it) and at CPMC they insert pacemakers into people’s stomachs for gastroparesis. At least cyclic vomiting is usually treated without surgery. (I’ve already unsuccessfully tried the main drugs they use to treat gastroparesis, with bad side effects and not much difference in my stomach.) What I did learn is that I really need to be realistic about what I plan to do in the hospital during long tests or when I’m sick. I.E. don’t bring 800-page books about crazy English toffs. During the half hour, hour, and two hour long breaks, I wandered around a bit, went to the cafeteria with my parents to get food (though that got old because I couldn’t eat and the smells were making me hungry), and sat around in the lobby flipping through magazines and looking at websites on my phone. It’s not easy to concentrate when there are lots of people talking and you’re nervous and everything. This time, when I’m going down, I’m going to bring some audiobooks on my iPod and a crocheting project and some other low-energy-requirement entertainment.

At least CPMC has some amazing views.

 

The shot I wish I had gotten was when a transport guy wheeled me around a corner on Thursday and I saw the Bay, the Golden Gate Bridge, and a huge swath of the city from the sixth floor of the hospital (which is on top of a steep, very San Francisco hill. Um, how do people run in that city?!)

The test was done by noonish, so we headed back to our hotel room. We were staying in an apartment-style suite so we had a kitchen and everything, which was incredibly convenient for me considering that I can eat about three things. I was able to bring my own eggs and bread and crackers and turkey and juice and such and eat some of my meals there. That helped. I then rested for most of the afternoon — the test and the drive down the day before had taken a lot out of me.

Unfortunately, Wednesday evening I got sick after dinner. It definitely wasn’t the food, because I just had grilled chicken and cous cous and I’d had the exact same thing (same sauce, from the same place) the night before and been fine. Unfortunately, my stomach does not seem to allow me to go more than a couple days without staging an uprising…It was not fun, especially being in an unfamiliar place and knowing I had a procedure the next morning. I took solace in the fact that I would undoubtedly be getting an IV the next morning and I could get them to put a liter in while they were at it. And IV Zofran. I do not turn down IV Zofran.

The next morning I arrived at CPMC bright and early at six o’clock in the morning. I got checked in in the Stanford Building, which is a sort of annex off the main hospital. The weird thing was that when I checked in, the receptionist told me I owed almost 2000 dollars!!! They had not informed me of that when I pre-registered over the phone. (It turned out that it was just because insurance doesn’t automatically cover anesthesia for this kind of procedure — it normally only pays for Versed — unless it’s medically necessary and it had to review the medical necessity of my having monitored anesthesia care. Luckily, we got a letter a couple days ago saying that it had been approved. Documented adverse reaction to Versed = pretty obvious medical necessity for something else.) I seriously have no idea how people manage if they don’t have insurance — or even how many people manage with it.

I got taken back to a bed to change into the typical massive gown. They’re actually really awkward to tie when they get to a certain size. Once I was changed, my parents came in and a nurse came to start my IV. She had a lot of fun typing in my drug allergies, particularly when we told her Tega-Derm, which is the stuff they use to cover IVs normally. She said it was the only thing the hospital had. We even told her all the alternatives we have on a list my mom now carries to all these kinds of things, but the nurse said they didn’t have any. She ended up basically just putting on about ten layers of tape.

A transport guy rolled my bed up the sixth floor GI lab in the hospital, thus rendering my previous mine freak out about not having the procedure in the hospital utterly pointless. I met my new nurse, Aletha, who was with me the whole day and absolutely amazing. She went over exactly what would happen to me during the procedure (endoscopy, inserting a catheter with a balloon into my stomach, and then several hours of testing after I woke up.) Part of the testing would involve my having to drink a can of Ensure, so we warned her that I have a slight (i.e. consistent) tendency to throw up every time I drink Ensure…or even just smell it because it’s going into my NJtube. She said she’d give me some Zofran before I had to do that part of the test to see if we could stop it. She also asked when I last threw up and when I told her it was the night before, she said she’d give me a liter after the procedure. 🙂 (My rule: if you’re going to put an IV in me, you’d better at least give me a liter. I’m looking at you, Enloe ER.)

I talked with both Dr. Shetler (who I swear has the best bedside manner ever — she was incredibly reassuring) and the anesthesiologist before the endoscopy. The anesthesiologist was a little concerned by my previous drug reactions and my weird paralytic episodes since. (My first exposure to him was hearing him exclaim, as reading my chart, “An adverse reaction to BENADRYL?!” That was reassuring. Also, I heard Dr. Shetler explaining periodic paralysis to him.) But once we’d explained what had happened in the past, he decided to give me Propafol and monitor me closely. In fact, even after I came out of the endoscopy, he kept checking in on me to make sure I hadn’t gone paralytic or anything.

I went into the room where they’d do the endoscopy and I think Dr. Shetler could tell that I was nervous (my systolic blood pressure was in the 120s, which, yeah, doesn’t happen so much.) Like I said before, she was incredibly reassuring and a great calming presence. She also told me I could have my mom in for the post-endoscopy testing. I heard her explaining to someone that they don’t usually let adult patients have someone in with them, but that it’s good to do it for the young ones like they do for the pediatric patients. I thought that was really nice of her.  The anesthesiologist came and gave me Propafol, I felt really weird for a minute, and then I was out.

When I woke up, I had a big tube in my throat and taped to the inside of my cheek. Aletha said most patients gag a lot at this point and they have to give them a med to stop them from doing so (so that they don’t disrupt the balloon.) I didn’t, for which I credit my NJ tube experience. After six weeks of that, you get pretty used to having a tube in your throat. I guess the experience is good for something after all. (Well, that and the whole, you know, medical stabilization thing.)

You can’t actually see the tube here. Or the EKG wires. And my oxygen nose thing is out. I felt like I had so much plastic coming out of me….Sorry about the sad face, I think I was in pain at this point.

We started with a part of the test where the balloon inflated with air and I was supposed to say whether my stomach hurt, felt nauseated, or felt full at various points. It was the part of the test designed to test for visceral hypersensitivity, I believe. It only hurt at the very end, when the balloon was the most fully expanded. I’m not sure if that means the test was positive or negative? I guess I’ll find out Thursday.

For the next hour or two, I just had to lie on my back while the test registered things. (Really specific, yeah. Sorry. I’m doing the best I can considering that I’m not even 100% sure which test I had or what it’s called.) I got some Zofran at a certain point both because I felt sick and to prepare for the Ensure.

My throat also hurt quite a bit — much like having the NJ tube newly in — and when I first tried sip the Ensure, I had a really hard time swallowing. However, unlike when I got the NJ in and just ended up sitting there crying and not really eating, I got pain medication. Aletha had to talk me into it a bit — I’m not a huge fan of meds, in case you couldn’t tell — but I have to say it was really, really worth it. Fentanyl didn’t even make me feel all that funny and it took away the pain. After it kicked in, I went back to the Ensure and got the whole can down. I had a good feeling, because with the oxygen blowing into my nostrils, I didn’t smell it as much. I didn’t even feel nauseated.

I stayed lying there for a few minutes until I suddenly felt funny. My heart monitor started beeping like crazy and the top EKG line went all wonky and my heart rate pretty much doubled. Then, all of a sudden and without any real nausea, I threw up all over my chest and hospital gown. I couldn’t sit up and my mom had gone to look at the EKG, so there wasn’t anything else I could do. She came back over and gave me a bag and I kept throwing up. (Side note: while I generally find CPMC a pretty fantastic place, their GI lab seriously needs to get better, um, receptacles. Big basins > little blue bags that don’t hold very much and have narrow entry points. You’d think a GI lab would understand these thing!) Aletha came back and gave me a shot of intramuscular Phenargan. I just kept apologizing because I felt really badly and worried that I’d messed up the study results by throwing up, but everyone kept reassuring me that there was nothing  I could have done. I mean, I’d even taken Zofran an hour before! IV Zofran. I got another half a liter at this point, just to ward off dehydration.

For the final part of the study, I got a shot of Imitrex, which is actually an anti-migraine medication, but apparently it does something interesting to your stomach muscles. Shortly after that I fell asleep. I got a nice nap in before Aletha woke me up and told me that the test was done. She said that Dr. Shetler said it looked like they got enough data in from before I threw up, so hopefully that worked out. She gave me a last hit of IV Zofran for the road and wished me well. She was very sweet and a great nurse throughout the whole thing. 🙂

The discharge instructions were pretty easy, and undoubtedly recognizable to anyone who’s had an endoscopy: no driving or signing contracts for a day, go to the ER if you throw up blood, advance diet as tolerated. Pretty straightforward, huh?

Yeah. About that last one.

Unfortunately, since Friday, when I came back to Chico, I haven’t really been tolerating very much. I’m in that awkward stage where I’m keeping down just enough food and drink to stay minimally hydrated but I can’t handle much. I’ve also been pretty exhausted — I slept a ton on Friday, and in the days that followed I’ve just lacked energy. I cannot wait for some answers and treatment to stop this horrible…cycle? Disease? Whatever you want to call it. But I’m hopeful that I’ll be getting the answers I seek very, very soon. 🙂 One more test and my followup on Thursday! I’ll keep you all updated!

Oh, and if you’re an American and live where the polls are still open and haven’t yet, GO VOTE!

Food in Oxford

Oxford is a city I will always associate strongly with its food. It’s not a culinary capital, but its food was important for me.

It’s where I learned to cook.

It’s where I learned to cook meat, even.

It’s where I learned that I like to cook.

It’s where I learned that it’s okay to take on crazy, adventurous recipes…in a dorm kitchen.

It’s where I learned how to feed myself, on my own, without relying on a dining hall or my parents’ kitchen for every meal.

It’s where I learned that rubber gloves can be really handy when pan frying chicken.

It’s where I learned that you probably shouldn’t wear rubber gloves when you’re latex sensitive. (Goodbye strawberries.)

It’s where I learned that you really can throw pasta up against the wall to see if it’s cooked.

We called Janosz the master of cooking times for a reason.

It’s where I learned that there is a substitute for every food, no matter how seemingly essential.

And every piece of kitchen equipment.

It’s where I learned about the history of coffee, a great topic even though I don’t drink it.

It’s where I learned that I have a great nose for wine, even though the smell alone makes me too sick to ever contemplate drinking.

It’s where I learned that Food Gawker can be addictive, and inspiring.

It’s where I learned about chocolate.

It’s where I learned that even free scallops aren’t always the best deal.

Even though it’s where I suffered frightening food reactions, where I had to pay attention to how much I ate in a way I hadn’t before, and where I ultimately got sick, food in Oxford is still a marvelous thing. It formed a new interest for me, it exposed me to new tastes, and it brought me closer to some amazing friends.

I’ll write about restaurants and cafes some other time, since I get asked for recommendations every so often. And I’ll write about the food “in hall” (at Teddy Hall’s dining hall) as well, and fulfill my long-ago promise to my Uncle Steve to blog about British food. (Though I’m sorry, but I never did attempt bangers and mash.) For now, I’d like to talk a little about the stores and markets that helped my friends and me indulge in our culinary tendencies as we embarked on adventures such as osso bucco, paella, a thousand risottos, chicken cacciatore, the perfect Bolognese, coconut curry, homemade chocolate, and crepe cake, all in ill-equipped dorm kitchens. (As well as a thousand simpler pleasures.)

Boswell’s for kitchen equipment.

The East Oxford Farmer’s Market. Sandy Lane Organic Farm for winter vegetables. Roz’s Breads from around the World for challah and the most delicious bagels – because I might not have set foot in a service the entire time I was there, but I could still stay connected, in my own way. (Being Jewish in the UK is a topic I should, but in all honestly most likely won’t, write about.) The Natural Bread Co. for savory pumpkin bread. (+ the used book stand for one pound books.)

The Tesco on Cowley Road for most of my weekly shop. (I forgive you for the initially confusing, chaotic, and bill-raising redesign, I swear. You stocked hazelnut milk thereafter, which had the double benefit of being delicious and unappealing to my kitchen-mates.)

Sainsbury at the Plain for quick stops on the way home, fresh-baked croissants, and those weeks when I couldn’t contemplate walking any further than necessary to get my blue-flavored Powerade and Ritz crackers.

Uhuru for things more specialized, and the times when I needed to pretend Cowleyfornia actually was and step foot in a natural foods store.

Mr. Simms, that candy shop on the High Street near the late gate to Teddy Hall, for chocolate bars with Mucha’s pictures on them.

The Covered Market for fresh, inexpensive produce, real butcher’s shops, and a fishmonger’s.

Hotel Chocolat for thank you gifts and window shopping.

Whittard’s for tea, naturally…though to be honest, I mostly preferred my Good Earth from home and apple tea from Turkey. The loose-leaf chais were lovely.

Marks & Spencer’s on Queen Street for some more specialized ingredients and a change of pace, though the place had the tendency to put me into sensory overload and the strawberries (before my sensitivity set in) were more expensive.

How to Gain Confidence in Speaking a Foreign Language

Because writing is distracting and there are other memories from this year worth preserving.

Let’s say, just for the sake of example, French.

  1. Go to a foreign country where the language is spoken. Get on a train going the wrong way from the airport, preferably in the middle of the night. Get off the train at a godforsaken suburban station that may or may not have a train heading in the right direction that late at night, but definitely no taxis. Try asking the drunken guy dropping off his even more inebriated brother whether you’re on the right platform. Try to interpret his slurred reply for your parents and ask him whether the last train for the night has already come, only to have him ask if you speak any other languages. Tell him that no, switching to Russian won’t help, unless you want also to switch to discussing whether you like milk and bread. Finally get on the train. For the next several days, read newspapers and books in French, but find that, in contrast to every other time you’ve been in the country, everyone seems intent on replying to you in English. Even the young guy at the post office you know doesn’t speak English as well as you speak French. Your stuttering probably isn’t helping your case. Surrender and slink back into reading what Le Figaro has to say about the whole DSK scandal. Head to another country where the locals speak a language you’ve only been learning for a year – let’s say, German – and immediately manage to strike up breezy conversations with cab drivers, hotel receptionists, waiters, etc. with no confidence problems whatsoever and while availing yourself of grammatical constructions you didn’t even know you knew that well.
  2. Despair of your ability to ever speak French again. Recognize that, logically, it’s probably mainly a confidence problem, but know that confidence is essential in being able to speak a foreign language and despair further.
  3. Keep reading from the stash of inexpensive paperbacks you picked up from the incredible multi-site bookstore in the legendary university quarter. Let’s say, Gibert Jeune. (God, you love French book prices.) Maybe occasionally watch a news clip or listen to a little Carla Bruni(-Sarkozy) song. Speak French to yourself in the shower and wonder what’s wrong with your ability to do this in real life. Console yourself that at least you have this ability and should be able to do necessary academic work in French. And that you can read Hugo in the original. (God, you love Hugo.)
  4. Go off to study abroad, but in England, where they speak something like the same language as at home. Gather your courage and sign up for the French Society at the Fresher’s Fair. (Signing up for the Scandinavian Society mailing list by accident in the process…You put your name down on the table with what looked like a tricolore and didn’t realize anything was amiss until the guy manning it invited you to come to the brunch tomorrow to enjoy some of the delicious moosemeat they had procured.) Go to the introductory cocktail party and mostly speak with one girl, another fresher…and in English because both of you are a little too nervous to speak French. Hold your own okay when speaking to a Canadian guy, but still sincerely doubt your ability to speak in a more natural situation, or to an actual Frenchie.
  5. Sign up for an intensive history course option for the second (middle) term. Put down three options, one of which involves doing a lot of reading in French. Get that one. Look at the texts and reassure yourself that you can read all of these.
  6. Look at your actual schedule and realize that while you can read all of the texts individually, the speed necessary to read one to three of them a week might be a little more challenging. You’re going to have to work on this over break.
  7. DON’T PANIC.
  8. Google tips for how to improve your reading speed in a foreign language. Don’t find much. Decide to try a couple of suggestions any way. Put on an audiobook of Diderot’s La Religieuse while doing a puzzle. Make it through three hours before you get bored and realize you were reading faster than this before, anyway, and you might as well read it on your new Kindle.
  9. Install a French (French-to-French, monolingual) dictionary on your Kindle. Discover how handy it is.
  10. Get desperate and think outside the box. Look at suggestions for how to get kids to read faster in English and see that they should read below their level, because reading faster makes for reading more fluently, which makes for reading faster….Download some free children’s classics and read them at a quick clip. (And recognize why people talk about Anglophone children’s literature being superior.)
  11. Download classic plays in bulk. Moliere and Corneille and Racine, oh my! Read them and realize that you can read them at a comfortable clip. Read them on planes, which means you’re really reading them for fun and distraction without too much effort. Be happy about this, but expect it to do absolutely nothing for your speaking abilities.
  12. Go back to school and survive the semester of the further subject. Read lots of primary sources in French. Skim lots more secondary sources in French than you would have thought. Get really quite fast at skimming those secondary sources. Still opt for the English ones when you can. Sometimes look at translations for the primary sources, but do a presentation on one of the books that doesn’t have a readily available translation. Realize that other people don’t find Stendhal funny and there’s probably something slightly wrong with your head. Read lots of quotations aloud in class and tutorial. Keep reading.
  13. When your friend’s mom is visiting and takes you all out to dinner, have an allergic reaction to mushrooms, take Benadryl, have an allergic reaction Benadryl, and then correct another friend’s French counting through your near-paralytic haze when everyone probably thinks you’re high as a kite and just not there. Soixante not sixante.
  14. Go home for a break and don’t touch any French-language anything. Chat with your neighbor in German. Glance at a few Spanish-language websites. Contemplate taking up Italian – it was so beautiful in Rome a few months ago….But nothing French, not even finally finishing watching Z.
  15. Join your friends in Paris for your friend’s twenty-first birthday celebration the week before school starts back up. Arrive early in the morning at the hotel, where everyone else is already checked in, and speak with the people at the reception desk and breakfast in English. Head out with friends and friend’s mom and speak with the taxi drivers and museum cashiers in English. Give a history of World War II, as summarizeable on two paper napkins, in forty-five minutes in the museum café. In English.
  16. Go to dinner at a restaurant that night while half asleep from jet lag since it is, after all, only twelve or so hours after you got off a flight from California. Make sure that it’s the type of restaurant where the menus are all in French and the waiters only speak French. Make sure your group of eight includes a vegetarian, a vegan, and some very complicated food allergies. Make sure that you’re the only one with more than the equivalent of a year or two of rusty middle/high school French. Get put on the spot for language work before you have time to take off your coat, much less think about whether you can speak or not. Blearily translate the menu. Even more blearily negotiate your friend’s mom’s wine order, pretty much as soon as you sit down. Explain what a vegan is, what an American vegetarian (not pescaterian) is, and all the things you and the soon-to-be birthday girl are allergic to. Relay everyone’s questions to the waiter and the answers back. Do all of this before you realize that you’ve done it all, and in French. Don’t really think about how easily you’re speaking until the guy sitting next to you, your friend’s sister’s boyfriend, informs you that you have a really good accent and asks for pronunciation help with his phrasebook.
  17. Continue to play interpreter and sight translator for the next six days. Speak well enough that the tour guide your group has for a few days encourages you help navigate meal orders even when he’s around, at least for yourself.  Manage plenty of situations where you’re the only one who speaks both English and French. Get replied to in French, even in situations where the other person speaks some English. Talk a friend into the Orangerie and Orsay for free, as your UK student visas should allow. Basically just speak the language.
  18. Realize that yes, you can.