Just a Quick Update….

So, how ’bout them Giants?

Fun fact: the Giants have won the Pennant once more than they’ve played in the Word Series. Anyone know why?

I’m in San Francisco right now, and from the images on TV, the parade was pretty crazy. Something like 1 million people showed up? Luckily it wasn’t near CPMC and we were able to get to the hospital alright.

I had my Gastric Emptying Study done this morning. It was actually my second one, since I had one done at Enloe in Chico, but this one included liquids as well as solids. Basically it involved my eating radioactive Egg Beaters and toast and the getting scanned after 30 minutes, 1 hour, 2 hours, and 4 hours. In between, we explored the hospital a bit and hung out in different waiting rooms. I read a few magazines and played around with my phone, but found I couldn’t really read books. It was too noisy, for one thing, and I was too tired and distracted.

The preliminary results from the GES (just unofficial numbers) look good, ie no gastroparesis. That’s what we expected, but it’s nice to have it confirmed.

Now I’m back in the hotel room resting up before tomorrow. Tomorrow’s the big day: the endoscopy and antroduodenal manometry/motility study (I’ve seen it called both things but they’re the same.) This is the one that took so long to schedule — because I need an anesthesiologist!!! I have to admit that I’m quite nervous about tomorrow. It’s not so much the procedure itself as the anesthesia that scares me. It’s my bad drug reactions that have forced me to have it in the first place (my doctor normally would have used Versed or Benadryl but…there are quite a few people who can attest to problems with that for me.) I worry  about having an episode, either of paralysis or vomiting. I…well, I won’t go into it all, for my sanity as well as yours. I’ve  already talked to an anesthesiology nurse on the phone and I plan to talk to a doctor as well before I get anything. It’s a really good hospital and, logically, I know that I should be fine. Just that I really shouldn’t read arguments over whether or not HKPP increases the risk of malignant hyperthermia…or Google malignant hyperthermia. 

I plan to do a catch up post about the last couple weeks at some point — there are lots of things I want to write about. Sure, there are some medical things (another infusion, a good GI appointment, another paralysis episode), but there are also fun things (some new food favorites, BOOKS) I’ll get there but it will probably be after another update about this stuff.

So, the game plan:
6 am tomorrow, endoscopy (w/anesthesia) and antroduodenal manometry

Next Thursday morning: Hydrogen breath test (for SIBO)

Next Thursday midday: follow up with Dr. Shetler

I have an Instagram now (whimsicaldesperation) so if anyone wants to follow me, if Im up for it I’ll probably update there and Facebook before anywhere else.


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.

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.