Jordan Eats Enteral Formula

It’s all about the Peptamens, baby!

Get jealous, people! I have a great supply of Peptamen 1.5! I’m actually not being facetious at all. I started bouncing around when I got a call this morning saying that insurance had stopped dragging its feet through bureaucracy and had approved my new formula. (It helped that I was on my morning “break,” where I flush my tube, wash out the night’s bag, and shower.) Peptamen is the formula that my doctors think I’ll tolerate better than my old Jevity, because Peptamen is “semi-elemental.” That means that the ingredients in it are already broken down. It’s therefore less likely to cause pain, nausea, vomiting, gas, diarrhea, cramping, etc. Sounds like a good improvement, right?

Hooked up.

The other handy thing about the formula change is that I’ll be getting 1.5 kcal per milliliter rather than 1.2 kcal/ml. That makes for a nice difference when it’s spread over 50 ml/hour for 24 hours! Hopefully this will help me gain weight more easily, as well as more comfortably. (Being able to sleep without waking up in pain should be quite the luxury.)

I’m thrilled and incredibly grateful for this change.

The last couple of days weren’t great, stomach-wise. I didn’t keep much down by mouth (after doing a bit better over the weekend) and had a fair amount of pain. It didn’t help that we went back down to SF for a cardiologist appointment on Monday (more on that later! I’m trying to space out the big, crazy, “this should be an episode of House” medical stuff with more daily life kinds of things) and those trips are always exhausting. Also the whole waking up in the middle of the night thing. Also the fact that my dear Joey pump, which has been doing a great job of not beeping at me in the middle of the night, has started doing so about an hour before I was intending to wake up.

In bookish news, I’ve been rereading His Dark Materials, and I finished The Subtle Knife this morning. It’s particularly fun to return these books now that I’m intimately familiar with so many of the sights in Oxford that they reference. On Friday, when I was in the ER (yeah, that stories coming as well — it ended with a new tube), I read Dodie Smith’s I Capture the Castle. It was fantastic and I highly recommend it! Part of me wishes I read it while high school-aged, just because I think it would have been one of those wonderful books that becomes a best friend, but a selfish part of me (if one can be selfish to one’s own past self) is thrilled to have it now. (See: reading the entire thing in the ER while waiting for the intervention radiologist to have time…on a slow day…when there wasn’t a crazy weight.) It’s one of those books that makes me question the assertions that chick lit and YA lit are new and depraved (I’m exaggerating, but not much) forms of dumbed-down literature. I think that I Capture the Castle has much in common with the best of both those genres, and it’s an intelligent, pretty wholesome in a non-preachy way sort of book. The narrator, Cassandra, is a 17 year old girl who lives in “not-so genteel poverty” in a decrepit castle in the English countryside, where she seeks to practice her craft as a writer by recording the events that transpire within and around her charmingly idiosyncratic family. Much changes for her, her older sister, and her artist’s model young stepmother when a pair of wealthy young American brothers move into the neighborhood. It’s a bookish sort of book and a writerly sort of book; there are literary references and jokes about writing and writers that anyone with aspirations to being one — or who has spent considerable time around one — can relate to. I’d particularly recommend it to bookish, writerish sort of teenaged (or even preteen, maybe) girls, who I think will find Cassandra a great “friend.”

 

 

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Binge Reading?

Since Friday evening….

Gene Stratton-Porter, A Girl Of the Limberlost

Mary Ann Shaffer and Annie Barrows, The Guernsey Literary and Potato Peel Pie Society (Breaking my “rule” about books about book clubs and sewing circles and knitting societies…this book is nothing like the typical, Jane Austen Book Club-type one of those. Instead, it’s a lyrically written novel with a charming, sweet, wholesome story about endearing and wonderfully good characters. Oh, and I SO want to get well and travel to Guernsey!)

Edith Nesbit, The Enchanted Castle (revisiting childhood courtesy of Girlebooks.)

Jean Webster, Dear Enemy (I loved Daddy-Long-Legs as a little girl and never knew it had a sequel! The romance, of course, is entirely obvious from the beginning, but it’s still a fun story!)

Catherine Asaro, Sunrise Alley (Which one of these things is not quite like the others?)

Jaclyn Moriarty, The Life Murder of Bindy MacKenzie (One of my favorite YA books! Clever, amusing, and well written.)

Jean Webster, Daddy-Long-Legs (Well, I had to follow up with a return to the original, didn’t I?)

Plus the first half of Louisa May Alcott’s Eight Cousins and Paul Strathern’s The Artist, the Philosopher, and the Warrior.

I do this sometimes: I binge read. Others binge drink or binge eat (no disrespect intended to the seriousness of those conditions.) I consume book after book in ridiculous quantities. The crazy thing? This was really only a sort of borderline episode — I’ll sometimes literally not move while devouring book after book immediately after another, doing little else. (Those tended to occur at the end of a stressful semester.) This weekend, I actually spent quite a bit of time listening to audiobooks, crocheting, watching TV, listening to music, talking with my parents, dealing with medical stuff, etc.

I fully recognize I’m a little bit strange….

I’ve also crocheted three scarves this week. Much better than sitting around and being miserable, right? 🙂 Cause, yeah, this weekend? Nothing down by mouth. Difficulty tolerating the tube feeding, including experiencing the joys of “dumping syndrome-like effects.” (Look it up. It sucks.) Having every single listed side effect of my medicine except constipation and anaphylactic shock (but including heart papitations.) Throwing up stomach juices after bolusing water into my small intestine. BUT I’ve been able to read lots of lovely books! 🙂

I’ve stocked up on some audiobooks from the library for the upcoming drives to and from San Francisco: Macbeth, Huck Finn, and Journey to the Center of the Earth. Radio gets tiresome when you’re doing this many drives.

Oh and the good news: in addition to my appointment on Tuesday with Dr. Shetler (neurogastroenterologist), I got in to see the neurologist she recommended! I’ll be seeing him(?) two hours after my appointment with her! It should be a good day — answers from the Electrogastrogram last week and a real start on figuring out my paralysis attacks!

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!

Because Any Time a Headline Starts with “Peer’s Daughter….”

I’ve been looking for this volume for a while. Today, my dad surprised me with a copy. Let the Mitford madness begin continue!

For those not familiar, the quick run down is this: An English Peer and his wife had seven children, and six daughters. They all grew up in a variety of English country houses, where they learned how to raise chickens and come up with ridiculous nicknames. Except for the Boy, who, being a boy, went to Eton. Nancy the Novelist became a Bright Young Thing and played with Noel Coward and Evelyn Waugh before saying au revoir to her gay ex-boyfriend and her unfaithful husband to go write about Voltaire’s love life in Paris. She was a socialist, but that didn’t stop her from writing about how vulgar it was to ask for a serviette. You might have heard of some of her novels, like The Pursuit of Love and Love in a Cold Climate; they were mostly about her family and the ridiculous nicknames. Diana married a Guinness (yes, like the beer) and was frightfully wealthy and famous, but decided she’d rather take up with the Sir Oswald Mosley, who was already married to the Viceroy of India’s daughter, because fascism was more fun. Diana spent most of the Second World War in prison, because being relatives of Churchill’s didn’t excuse your being more dangerous, cleverer, and prettier than your British Union of Fascists husband, it just got you a cell to share with Roderick Spode. Unity towered over the rest of her year’s debs (literally) when they were presented at Court, but took her finishing year in Berlin instead of Paris so that she could become bffs with Hitler, which she did with remarkable skill, but then he liked his other girlfriend Eva and went to war with Britain and Unity shot herself in the head with his gun. She survived, he paid her hospital bills and sent her home, and she became too mentally incapacitated to be tried and a Christian Scientist. Jessica had shared a bedroom with Unity, but made sure to carve hammers and sickles with a diamond ring next to the swastikas Unity put up until she saved up enough in her running away fund to elope with her cousin (and Churchill’s nephew) Romilly, with whom she went to Spain, where it did not so much rain as rain bullets. They joined the International Brigades, fought (for the Republic) in the Spanish Civil War, went to Canada and the US, and when Romilly died, Jessica married a civil rights lawyer, joined the Communist Party, and taught us all how much funeral providers were ripping us off. Little Deborah took the traditional route (someone had to) and contented herself to stay out of the spotlight by marrying the Duke of Devonshire’s younger son, who became the heir when his older brother made the commonly fatal mistake of getting into an airplane with Kick Kennedy. Thomas, the boy, liked fascism a little to well to fight in Europe and so went to fight in Burma, where he died. And Pamela mostly liked chickens a lot.

And then they all became Harry Potter characters.

(No, seriously. Sirius is Jessica in drag and Diana and Unity bear more than a passing resemblance to Narcissa and Bellatrix. And Rowling has flat out said that she named her daughter after Jessica, as JKR’s favorite book is the one I hold above, so if you’ve ever wondered which way she leans….)

A Bit of an Update

Warning: I think my writing is a bit “off” here, but I’ve been delaying and I really want to get this up. Sorry about that.

It’s been too long, really. I should have updated at the beginning of last week, and talked about how I was doing a bit better all around, and even getting out a bit.

Enjoying the beauty of Bidwell Park.

But then last week happened.

Basically, in the last two weeks, I’ve now had three episodes of temporary paralysis.   Last week involved two hospital visits — one Tuesday and one Friday. It’s been something of an uphill battle to keep my weight up. It looks like in addition to whatever is causing the vomiting (still looking like CVS; still won’t get a fully official diagnosis or treatment until the beginning of October at the earliest), I might have another disease causing the paralytic episodes, and this one’s a very rare genetic disorder. There have definitely been some points when keeping my spirits up has been rough. I know I owe a lot of people emails/FB messages and I promise I’ll get to them eventually.

For the most part, I have been incredibly fortunate in receiving excellent medical care. Practitioners haven’t always known the answers, but they’ve looked for them and done what they could to keep me comfortable in the meanwhile. While the ER is never a good place to be, I’ve had much better care in the Enloe ER than I’ve heard of people receiving elsewhere for these kinds of conditions. I even have a favorite doctor there, who has gone above and beyond in talking to me about CVS and providing me with extra information. However, last Tuesday night I had a different experience. I really feel badly complaining when in general I’ve received good care, but it was pretty miserable. I had another attack of paralysis and, following the instructions of my primary care physician, I was transported to the hospital by ambulance. Once they established that I was not mentally incapacitated and my vitals were within the acceptable range, I was left paralyzed in a wheelchair, alone, to wait to talk to the triage nurse. I understand that they didn’t have a bed for me immediately, but being left alone and unable to move was a frightening experience. Luckily, my parents caught up quickly and found me.

I was called and we went to talk to the triage nurse. Unfortunately, this was probably the worst part of my ER visit. We explained that this had been happening and my doctor said to come in if it happened again and to have her called so that they could run tests while I was in the attack. (They never called her, for what it’s worth.) We told him that it was particularly important that I had my blood drawn while I was still paralyzed. He informed us that “potassium doesn’t change that fast” and it wouldn’t matter if it waited an hour. (It does and it did.) He handed me a cup for a urine sample (um, not going to happen when I could barely twitch my fingers) and sent us to wait in the lobby. I spent the next hour or so barely holding myself upright in a wheelchair while my dad held a basin up to my lips so that  I could throw up, because I couldn’t move my arms or legs. I also discovered that while my core isn’t completely paralyzed during an episode, the muscles there are weakened — it was exhausting and eventually painful to hold myself upright. Again, I understand that the ER didn’t have a bed available when I came in, particularly as this is a recurring thing with full recovery (and therefore not a stroke), but I don’t understand why they couldn’t have done a quick blood draw to check my potassium.

I did get the next available bed and got my potassium drawn. However, by that point it was probably an hour and a half after the beginning of my episode and I was regaining a lot of movement in my limbs. When my blood work came back, it showed my potassium as being at the very bottom of the acceptable range, but not low enough to explain the paralysis. However, with the condition we think I might have, that would be a pretty typical result for the end of an attack. With that disease, serum potassium falls and rises rapidly, so it’s important to get a blood draw as close to the beginning of an episode as possible. We talked to the ER doctor, who said that he didn’t really know what could be causing this, except that there are such things as periodic paralyses (what we were trying to test for) or that it could be some type of atypical seizure or something and it was good that I had an appointment with a neurologist coming up. I got some IV Zofran and that helped me stop throwing up. (My bloodwork also showed that I was a bit dehydrated, but I didn’t get any hydration — as the nurse was unhooking me from the IV to go home he commented that I looked dry and I should have gotten a liter while I was waiting for the test results, but by that point it was almost midnight and we just wanted to get home.)

Wednesday and all day Thursday were good, but Thursday evening I threw up copiously. It was non-stop for several hours until I could fall asleep — definitely one of those instances when I threw up 50+ times. Friday morning I couldn’t keep down water or oral medication, so I went in for a round of outpatient infusion for IV meds, hydration, and potassium. I felt okay for a little while after getting the IV Zofran and ate some toast, since I was supposed to be eating a bland diet as I didn’t have the feeding tube anymore. That was fine for about an hour until I started feeling funny. It started with a generalized weird sensation throughout my body and a kind of fluttery feeling in my chest. I get this feeling before some of my worst episodes of vomiting, but I always forget what it is while I’m experiencing it. A nurse checked my vitals and they were fine so we figured it was probably just a side effect of being rehydrated. I got up to go to the bathroom, came out, apparently looked as pale as a ghost, and immediately threw up in the sink. I then proceeded to throw up violently for the next two hours, despite the Zofran. Finally, a triple dose of Zofran, Ativan, and Phenargan stopped the vomiting…by making me fall asleep. After about twelve hours in the hospital I was able to go home.

Saturday and Sunday were really rocky, and I wasn’t able to keep a whole lot down. Sunday evening was particularly bad. I have all these pink plastic basins from the hospital now, and they have measurement lines. I threw up what was probably close to two liters that night — way more than I had take in. (And this was after having pre-medicated with both Zofran and Ativan.) Early Monday morning was problematic as well, but I finally broke out of it and was able to eat and drink quite a bit throughout the afternoon. I started to have another round that evening, but we managed to mostly hold it at bay by driving around for ninety minutes — when we were moving smoothly, I was okay, but every time we came to a red light, I’d start throwing up again.

Yesterday, I had an appointment with my doctor and we talked about what’s been happening. She thinks the neurologist will be able to do some testing to rule some other things out, but probably won’t be able to diagnosis hypokalemic periodic paralysis, if that’s what I have. She said she’d been asking around about it and nobody in town seems to be familiar with treating it. Statistically, that’s not really surprising — it’s a 1 in 100,000 disease (there are plenty of genetic disorders that are considered rare and have rates more like 1 in 3000 or 1 in 5000, for comparison) and Chico doesn’t even have that many people. Hopefully they’ll be able to diagnosis and treat my paralytic episodes (whether they’re HypoKPP or something else) at CPMC. If not, we might have to go somewhere like the Mayo or Cleveland Clinics. I’m going to try to eat some more foods with potassium. I’m also going to try to eat even more frequently (like every hour or so that I’m home) and avoid larger meals to see if that helps my stomach. (Of course, I did that yesterday, got in quite a lot of food and water, didn’t have much stomach upset…and I’m down a pound and a half on the scale?! So weird….)

Right now, I’m feeling a bit on edge — I seem to get that way for 24 hours or so after each paralytic episode, and I had one last night. My muscles are also a bit achey. Being sick this much and this long wears on you in more ways than physically and I’ve been feeling it a bit more recently. In general, I’d still say I’m keeping my spirits up, but there have been moments when I’ve gotten frustrated or upset. I struggle a lot with feeling like it’s unfair — I wouldn’t wish this on my worst enemy, but it is difficult when I see people treating their bodies with ill regard when I always took good care of mine. (Seeing people my age smoking is particularly aggravating, I have to admit.)

And a picture I like from shopping last week before things went awry. I’ll use it as a transition because pictures are fun?

On a more fun note, I’ve been reading a fair amount lately, and I have some recommendations!

Joseph Anton by Salman Rushdie. Obviously, this one has been getting a lot of press lately as it just came out, but I just have to add in my recommendation. I hadn’t read any of Rushdie’s fiction, but I heard him speak last year (the night before I flew to Oxford) and I was excited to read his account of his years following the fatwa. It was fantastic. I carried the (not insubstantial hardcover) around with my for a couple of days until I finished it. In many ways, it’s a story better, and stranger, than any spy novel I’ve ever read. If it were a novel, I’d say it made for a good story — but I’m sure we’d also look askance at the possibility of such things actually occurring. But it’s all the more gripping for knowing that it was Rushdie’s real life. The thriller-esque aspects of it weren’t even the memoir’s strongest points, though. I was compelled before they began, during Rushdie’s descriptions of his childhood in India and his years at Rugby and Cambridge. Rushdie has a strong, clear voice that comes through all the more through his employment of the third person. (I’m glad I didn’t realize going in that he wrote the memoir in such a style, as I probably would have been skeptical, but it really worked.) If you’ve seen Rushdie do an interview on TV or anything like that, I think you’ll recognize how much his personality — and his slightly twisted sense of humor — comes through on the page.

The Small Change trilogy by Jo Walton. I’ve mentioned the first two books in this series here before, but yesterday I acquired and finished Half a Crown, the third and final volume. These books are set in an alternate history version of Britain, where the country made peace with Germany in 1941 and veered into a distinctly British fascism. Walton’s writing is smooth and immensely readable and the stories are engaging, with intriguing, politically-charged mysteries. It’s a fascinating look at what could have been. There are many parallels between characters and real life figures (the Farthing set for the Cliveden set; the Larkin sisters for the Mitfords), which will amuse fans of the era. Many reviews have pointed to parallels with the Blairite, GWOT, post-911 security state, but I found the way the book highlighted certain inclinations toward casual classism and anti-Semitism (and the way that those could potentially turn virulent, particularly in the latter case) even more striking. I find myself recommending these books frequently — my dad’s reading the first one now — and I plan to continue doing so. Read them.

This one is more of a “stick with it” than a “read it in the first place” sort of rec: The Casual Vacancy, by J. K. Rowling. I had a bit of a culture shock going in (I really had no idea what it would be about, and for some reason had thought it would be some kind of urban fantasy for adults — I guess I avoided spoilers a bit too vigorously) and it took me a while to get into this. I sometimes have a hard time adjusting to writers I like writing differently than I would normally expect (I still have yet to acclimate to Tamora Pierce writing in the first person, three books on), and that definitely was the case here, but once I (finally) got into The Casual Vacancy,  it was worthwhile. I hesitate to say that I enjoyed it, exactly — I don’t want to spoil the book, but I’ll leave it at saying that it’s not a forces of light over forces of darkness sort of book. (Even if it may have a very children of light sort of political slant to it. ;)) (Is one of the advantages of having a blog getting to make completely obscure references without feeling abashed?) Still, I’m glad I stuck with it.

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.

What Kind of Day (Week. Plus.) Has It Been?

Hi everybody. I’ve been updating a little bit on Facebook but have neglected my blog. Additionally, I think a better explanation of my Facebook status updates is in order, not to mention recording all of it for my own memory. Because to answer Aaron Sorkin’s (paraphrased) recurrent question? It’s been one heck of a ten days.

In some ways, this isn’t fun to write about. It would be more fun to write about reading (I haven’t made much progress recently, though I do need to update my books read list, but I still want to do a post on Jo Walton and I have a whole list of topics for some day.) It would be more fun to talk about food, if I were cooking and eating interesting things. I’d rather talk about how it’s Rosh Hashanah and let’s all eat some apples and honey (or honey cake!) for a sweet new year. It would be enjoyable to discuss yoga – on the couple of good days in those ten I managed to do a little bit of gentle, at home yoga (with my doctors’ blessings/encouragement.) I guess I could talk about yoga now. There is always this.

My form is better when I’m not attempting a shoulder stand on a squishy hospital bed with an IV in my arm and loaded up with Zofran, Ativan, and morphine, I swear. (I have a funny story about shoulder stands. I’ve been doing them since I was six years old, even in my extended phase of thinking I wouldn’t like yoga because it would be too meditative or something. I literally didn’t realize they were yoga until about two weeks ago. You see, I spent a significant portion of my time ages six to eight upside down in supported or unsupported shoulder stands. In second grade, I played Go Fish every Monday afternoon, mostly upside down. Now, in lower elementary we did yoga a couple times a week at school – you know, hippie school and all that – and I must have learned the pose there. But somewhere along the way I forgot where I’d learned it and just thought it was my own idiosyncratic contortion. So, since I’ve been doing them, I’m disproportionately better at them than other yoga poses. When I’m not on a hospital bed and morphine, anyway.)

Hospital bed? Morphine? Let’s back up a bit.

Thursday I ate lunch. A little while later, I felt slightly nauseated. Before I knew it, I was vomiting forcefully. I “only” threw up a couple handfuls of times (that’s only for me), but I emptied my stomach. My mom came by and (sorry for the gross details) saw the vomit flying shooting out of my mouth and travelling a foot or two. She asked if it were projectile vomiting and I said that I didn’t think so, since it wasn’t going twenty feet or all the way across the room. (She was right, as it turns out. Mother knows best!) I did know that this was a different kind of vomiting than I had had in a while. I didn’t feel very well after this. It’s hard to describe, but I had a general sense of malaise and a gut feeling that something was off. I didn’t eat dinner but that evening I started to watch some TV with my parents. Gradually, I felt my body getting weaker and less able to move, though it felt like the world was moving beneath me. I was also having trouble keeping my eyes open. I also felt very hot. My parents tried to move me from a chair to the couch and my legs couldn’t support my weight. By a certain point, I couldn’t move my arms or legs at all. It was pretty similar to my reactions to Benadryl and Versed, except I hadn’t taken anything like that. My parents wanted to call my doctor or take me to the hospital, but feeling like that I just wanted to be left alone. We agreed to see how I was doing in an hour. Gradually, I regained my ability to move and we added it to our list of things that needed to be discussed at my next doctor’s appointment.

The next morning, I woke up with a bit of a sore throat, a stuffy feeling in my head, and an achey body – classically cold-like. My temperature was 99.2, which, for me, constitutes a fever. (By way of comparison, the previous night my temperature was 97.8. My normal is more like 97.3-97.8 than the classic 98.6.) Friday through Sunday were taken over by cold and mild fever (and some accompanying stomach upset.) Monday and Tuesday I started feeling better and actually had a couple of good days, although I was still a bit low energy.

Wednesday morning, my mom had to wake me up to disconnect me from my feeding pump. I was sound asleep at that point, which surprised her. Even more surprising, I rolled over and went back to sleep for another hour or so after she disconnected me. I slept almost twelve hours, which is a lot even more my current state. When I finally woke up, I still felt exhausted and had to drag myself to the kitchen to get some cereal and a banana. Not long after that, I was projectile vomiting again. Once again, some general malaise-y feelings followed and I watched TV on my laptop in bed for an hour or two. I got up to put my computer away and could feel my body was week. I set it down on my desk. When I turned around to head back to bed, my legs gave way and I crumpled. I crawled back into bed. Before I knew it, I couldn’t move my left arm or leg at all. I would try to move my fingers, think – and feel like – they were moving only to look down and see that they were completely still. I even had trouble keeping my left eye open. This time, I realized something had to be very wrong. I called my mom in because I was scared to be alone. I spent about an hour completely unable to move my arm and leg. This happened around lunchtime, but my mom called my doctor’s office as soon as it was open again and spoke to one of the nurses. She had my mom do a couple of quick checks on me (having me stick out my tongue and squeeze her hands, as I’d regained arm mobility by that point) and said she’d talk to my doctor but that if this happened again I needed to go to the ER. My doctor called back quickly and said that I needed to come in that day.

I was in my doctor’s office about an hour later, by which point I was feeling a bit shaken up, but I was able to walk and support my own weight. I saw the nurse practitioner for a neurological exam, which thankfully ruled out a stroke. I have to say, it’s awfully frightening to be checking for a stroke when you’re twenty years old! The only test, out of about a dozen, that was off was the one where I was supposed to track her finger with my eyes (still not sure why on that one.) My heart rate showed orthostatic intolerance, which basically means it went up by more than 10 when I went from sitting to standing, and is a sign of dehydration. My doctor came in to talk about what happened and said she wanted me to get bloodwork done to check my sodium levels, in case I was having some kind of pre-seizures. She also said it was possible that my new daily medication could have been causing this reaction, but she wasn’t sure and would have to check. (Reglan, my old med, could have, as could have my as needed meds, but I hadn’t taken any of those in a while.) She also suggested I head to the hospital for another round of hydration therapy.

View from my hospital window

My parents and I headed the block from my doctor’s office to Enloe Hospital and checked in. I got hooked up with an IV and had blood drawn for labs. (My sodium levels were okay.) I started vomiting again, despite being NPO and not having had anything to eat or drink since my attempt at breakfast, and had to get IV Zofran. Because giving me two liters of saline would take until 2 or 3 in the morning, the nurses got me hooked up to a pump for my NJ feeding so that I wouldn’t miss out on that time. First, though, my nurse had to unclog the tube again. Ugh! Luckily it was relatively easy that time. So, at 3 a.m. I headed home, though my blood pressure had been a bit low even for me.

The vascular access nurse left his smiley mark.

I woke up with a bit of a headache. Okay, I was tired, even though I’d gotten some sleep in the hospital and more once home. But even in its early, not too bad stages, this headache was not a typical tiredness headache. It was a sickly headache, like a nauseous feeling in my head instead of stomach. It might sound strange, but this is a description I used on Thursday when I was still able to talk and it’s the most fitting I can think of. It was a green feeling in my head. (“Not nice construction paper green. Avada Kedavara green.”) It grew worse and worse until I was curled into a ball and crying. (Tearless crying, for what it’s worse.) All of a sudden, and without intending to, I started making this sort of humming or wordless singing sound. I couldn’t stop – if I did, the head pain would explode and I would have trouble breathing. As it was, I was hyperventilating. My parents tried to get me up to take me to the ER but as soon as I tried to stand, even with my dad supporting me, my legs collapsed and I vomited, despite having had some Zofran. I’m still not entirely sure how my legs collapsed like that – I couldn’t feel them buckling. My parents were scared and I couldn’t talk to tell them what was going on. I tried writing, but my handwriting wasn’t legible enough and what they got just told them that I was in pain. They called 911 and an ambulance came to get me. The EMTs gave me oxygen and got some relevant information (drug allergies, what I’d been taking, my ongoing condition) from my parents. I remember their asking whether I normally talked and was mentally functional and if the noise I was making were new.

They got me in the ambulance and quickly got an IV in me, even though my dehydrated veins were not the easiest to handle. I managed to communicate with them mostly with thumbs up and down. They got me into the ER right away. There, they relayed the information my parents had given them to some very confused nurses (or someone, I had an eye mask on and really couldn’t tell what all was going on) who didn’t understand some of the stuff in my history. They asked me a number of questions, some of which I was able to answer with gestures and some of which I managed to choke out answers to. It helped that one of the ER doctors who had treated me before came over and recognized me (as his favorite cyclic vomiter, apparently). He also remembered my dad and asked, “He’s English, right? No? Foreign, though? No? Just well-spoken then.”  That’s when I got the trio of Zofran, Ativan, and morphine pushed into my IV. It felt awful for a few minutes as it went in and they had to slow it down a bit, but my head pain dissipated quickly. They also drew blood for more labs and got me hooked up to some saline. I got a quick CT scan. I was able to take off my eye mask after a little while and my parents made it back to see me. I did, however, have some rather interesting sensations from all the drugs – feeling like I was floating through air and such. Not my cup of tea, though the relief the drugs provided made it worth it.

The ER doctor came back to talk to us. We talked a bit about what had happened the day before and about my upcoming appointment at Cal Pacific. He said that a hospitalist was going to come see me and that my primary care doctor wanted me admitted for the night. We also just talked about cyclic vomiting syndrome some and migraines in general. He said that migraines are basically a third stage of consciousness – there’s sleep, there’s awake, and there’s migraines. He was very nice and spent quite a while talking with us before the hospitalist came. She arrived and asked more about my history, both of this spell since May and back when I was eleven, and asked what tests I’d had done and such. She asked if I’d been tested for mono and Lyme and when I said no, she had those done. We talked about the episodes of temporary paralysis and she said that there’s an atypical kind of migraine that presents as temporary paralysis. (And if it turns out that I have CVS, which everyone at Enloe seems to think is a very fitting diagnosis, there’s no doubt that it’s a strongly migraineous type.) She also admitted me and sent me back up to the fourth floor. I was pretty emotional, and she was very understanding and reassuring.

The same room, with the same roommate, as before, as it happens.

I spent the night, hooked up to my IV and feeding pump. They kept giving me saline solution and, because my bloodwork showed I was low, a potassium supplement. I also got some dinner, got sick again, and got some more IV Zofran. That stuff can be quite miraculous in its effects…. I was so tired that I managed to sleep through some vitals checks during the night. Also through my tube detaching from the tubing leading to the pump and soaking my shirt, hair, and bed with Jevity, the formula that is only suitable for oral feeding in people with “altered perceptions of taste” or something like that, to give you a sense of its smell. The nurse had to wake me up to sort that situation out. (Also, I sweated enough to soak through my leggings and the sheets. Weird, and added to the list of things to discuss at CPMC.) Another nurse woke me up at 4 to take blood, so I didn’t see whether I would sleep through that or not.

Before they added the big clunky feeding pump.

My dad dropped by early in the morning to visit for an hour or two before he headed to office hours/class. My parents were amazing through all of this. I know that this had to be incredibly stressful, even frightening, for them, but they stayed strong throughout it. My mom joined me a little later, having walked over with a bag of supplies.

The hospital had fun feeding me. Basically, given my dietary patterns these days, it worked out easier for me to tell them what I could eat for each meal than to attempt to modify the menu selection. I was amazed that the standard options weren’t more lactose-intolerant friendly, though, since that’s so common. (It’s underdiagnosed, I guess.)

I got a shower to get the Jevity out of my hair and hung out with my mom for a while, getting more saline in. (Also another shot of Zofran.) My mom called my primary care doctor’s office because apparently we had a message at home asking for my parents’ cell phone numbers so my doctor could call and talk to them. My doctor got on the phone and gave us an update. It turned out that the medication I was on could cause the temporary paralysis, which, particularly when combined with my migraine-type propensities, was a relief to hear. Needless to say, I’m no longer on that medication. (Making for a total of three anti-emetics I’ve tried and couldn’t tolerate the side effects.) She also informed us that the mono test came back positive. So, apparently I’ve had mono at some point in the relatively near past. My doctor’s orders now include as much rest as possible.

My dad came back a little after one and we were all there when the hospitalist, Dr. Ward, returned. She said my blood counts and electrolytes were back to normal and that I didn’t need to stay. My CT scan from the day before had been good, too. We also talked about my mono result – she talked to the lab and they weren’t sure how far back it was good for. They were able to tell her that it would definitely show up if I’d had mono in the last three weeks, but they weren’t sure if it could have been from four months ago. Dr. Ward arranged for me to have blood drawn before I was discharged for another test that will tell us if I had it in the last month or if it were earlier. If it were earlier, it may be that mono, rather than a stomach virus, was what actually kicked off this whole episode. We also talked about CVS a bit and Dr. Ward said that Enloe has sent other people to Cal Pacific to see Dr. Snape and his students (I’m seeing Dr. Shetler) and they’ve been very good at treating CVS. It’s not a curable disease, but it is manageable. We’ll see what they think about diagnosis and treatment at CPMC on Tuesday.

After all of that, I finally made it home. I’ve been resting a lot (sleeping a LOT) yesterday and today. I’ve been looking at magazines quite a bit – I don’t want to spend too much time looking at screens because my head will start to feel funny, but reading is kind of difficult. I’m feeling a lot better than I have since Tuesday at least. And I have the immense relief of knowing that I’ll see the specialist on Tuesday. I just need to pack now. (That’s actually not the easiest thing to do when you don’t know exactly how long you’ll be somewhere!) I’ll try to keep everyone updated on what goes on over the next few days.

❤ Jordan