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.

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Library Loot 8/22/12

Library Loot is a weekly event co-hosted by Claire fromThe Captive Reader and Marg from The Adventures of an Intrepid Reader that encourages bloggers to share the books they’ve checked out from the library. If you’d like to participate, just write up your post-feel free to steal the button-and link it using the Mr. Linky any time during the week. And of course check out what other participants are getting from their libraries.

Georgette Heyer, An Infamous Army

I’m halfway through this one. Love, love, love it so far. I think it’s going to be one of my favorite Heyer’s — right up with Regency Buck. I’m going to have to try some more of her more meticulously historical fiction.

Christopher Isherwood, Berlin Stories

Goodbye to Berlin is one of my all-time favorite books. I wrote about it some as a guest blogger on another blog. I picked up this edition for his other Berlin story, The Last of Mr. Norris. I have high hopes!

Jo Walton, The King’s Peace

I have a bit more trepidation about this selection. I’ve recently fallen pretty hard for Jo Walton’s writing, but I often find it difficult to get into high fantasy series.

Louis Menard, The Metaphysical Club

This is for a class I’m taking locally. (I’ve got to keep my mind sharp!)

Louis Menard, American Studies

Ditto. I’ve read the first three essays (it’s a collection) and they’re enthralling so far. Reading about reading is definitely right up my alley.

***

In other news, I’d just like to say how much I appreciate the outpouring of support I’ve received in the wake of yesterday’s post. The words of support and inspiration people have passed on through Facebook, email, and so forth have meant the world to me. I had a doctor’s appointment this morning and my doctor commented on how I seem to be in much better spirits than when she saw me a week and a half ago. I think some of that stems from stopping a medication with cognitive side effects, and some of it from receiving more nutrition via the tube, but a big part comes from the incredible support I’ve received in the last few days since “coming out” about my illness. Thank you. ❤

Yesterday was a Good Day. I have them on a pretty regular basis, if not often enough. I was able to eat!

Brown rice pasta with tomato sauce and lean ground beef; steamed summer squash from the farmer’s market; melon from the farmer’s market; water with a straw (easier to drink that way with the tube.) I’m not gluten free anymore (lots of experimenting to find it wasn’t the problem), but I am eating more rice and less wheat if only because rice is more easily digested in the stomach.

Last night was rough and early this morning was rougher, but I seem to be over that bad spell. Fingers crossed I’ll get the rest of the day (and more) clear!

 

Captain Vorpatril’s Alliance — and my journey into the Vorkosiverse

The Ivan Book is out! Or at least available from Baen in e-arc. I think I’ve figured out what I’m reading on my Kindle while travelling tomorrow. 😉 It’s always exciting to wake up and realize that the book you thought you wouldn’t read until October is a click and fifteen dollars away….

The Vorkosigan Saga is a series that I’ve fallen for, and hard, in the last year and a half or so. It started with an offhand reference on some website comparing the relationships of Raoul of Goldenlake from Tamora Pierce’s Tortall books to those of Aral Vorkosigan from the Saga not quite named for him. I went ahead and Googled and came across a character profile from Jo Walton’s fabulous series of articles on the series of books (dative very important there.) Looking back at the article, I don’t think I really read it at that point, but two things struck me: 1. that there were people — published authors — writing in depth character studies on this pretty mid-list series and 2. the fantastic quote from Aral’s son who says, “He isn’t like anything, he’s the original.” Intrigued, I headed to the Wikipedia page for the series, skimmed through to get a general sense, checked on TV Tropes and saw the indication that the books were funny, and mentally filed the information. I think this was roughly in January, during winter break. I figured I would look at the books when I had a chance. That March, on the way either to or from home during spring break, I picked up the Omnibus Miles, Mutants, and Microbes, which contains the novels Falling Free and Diplomatic Immunity and the novella Labyrinth.

Falling Free was an introduction to Lois McMaster Bujold’s writing, and I liked it very much as a stand-alone work. It didn’t, however, really get me hooked on the Saga — it’s only loosely connected, as it takes place approximately 200 years before the rest of the Saga begins. Many of the connections — uterine replicators, Beta Colony — only resonated upon rereading it after reading the rest of the Saga. Diplomatic Immunity, one of the later books in the series, is more firmly rooted in the Saga, surrounding the adventures of one rather petite Barrayaran Lord Auditor, the irrepressible Lord Miles Vorkosigan, and his wife Ekaterin and an assortment of characters/sidekicks/innocent bystanders both new and old of the type that Miles — actually, the Vorkosigan family in general — tend to collect. I found the novel at various points funny and charming and exciting and enjoyed it. I still had a mental note to try more Vorkosigan Saga novels later. Sometime. It wasn’t pressing or anything. As clear evidence of this, I had Labyrinth remaining unread as I completed the second half of the semester. Sure, I had classes and lots of school reading during that time, but I was also read several rather long-winded and heavy works of literature then — think Zhviago, Notre Dame de Paris — so I  certainly could have managed the novella if sufficiently motivated. By the time finals were wrapping up and I was packing up, I felt like something a little lighter, and while surfing the web, I came across the Baen Free Library. Awesome site, by the way, and other publishers should totally take note. (And yes, I just said awesome and totally in the same sentence. I also read Pasternak and Hugo. It’s all good, or at least that’s what I’m telling myself.)

I read Mountains of Mourning and fell hard. I read Warrior’s Apprentice, on the same site, and gobbled it up, but mostly delighted in the parts on “Admiral Miles Naismith”/Lord Miles Naismith Vorkosigan’s home planet of Barrayar. (Medieval Ruritania. In Space. With linguistic conflict. And secret police. And fabulously strong women who are fabulously strong despite it all and who are changing Barrayar, really, I promise.) I returned to Labyrinth and found that I could fall just as hard for Admiral Naismith’s space-based adventures. (Yes, the books have lots of confusing identity issues. Yes, they’re even more confusing for the characters.) And then I acquired another omnibus volume, Cordelia’s Honor, containing the first books in the chronological order of the main series, Shards of Honor and Barrayar. I fell and I fell hard all over again. Cordelia Naismith Vorkosigan, the mother of Miles, wife of the aforementioned Aral, and protagonist of the first two novels of the main Saga. Cordelia is one of those characters for whom epic is more than just teenager-y hyperbole. She may not have launched a thousand ships with her face, but she most certainly did with her force of will, intelligence, and (yes, Cordelia) even honor. She’s a scientist, an explorer, a reluctant soldier who’s no less strong for her reluctance, and an incredibly caring friend, wife, and eventually mother. She’s a woman who quite literally changes worlds on her “shopping” trip and she manages to effect changes on Ruritanian Barrayar even as she hails from progressive Beta Colony, a sort of Berkely-cum-The Netherlands-cum-Sweden of a planet.

Ivan Vorpatril is Cordelia’s nephew, or something close enough, and the son of another one of Barrayar’s force to be reckoned with grande dames, Lady Alys Vorpatril. Ivan’s related to Cordelia through her husband, Aral Vorkosigan. Aral Vorkosigan’s titles, official and loathed and unofficial (you could make a Venn Diagram there) are too varied to ever combine in one breath, though LMB comes close in a few points. He’s Count Vorkosigan, one of the highest of the high Vor lords; Admiral Vorkosigan, the youngest to reach that rank; the Conqueror of Komarr or Butcher thereof (it comes down to POV there); Hero of Escobar (or…something); Lord Regent of the Barrayaran Imperium and virtual dictator of three planets; Prime Minister of Barrayar after Emperor Gregor reached his minority; and even more later. Oh, and he has a better claim to the throne in his own right than said emperor, though the Vorkosigans and Vorpatrils don’t like to talk about that, thankyouverymuch. (Except when they do.) Basically, he’s a tough act to follow as a son, and he may be an even harder act to follow as a nephew, particularly when you consider his son’s approach to the problem. (Treason laws? What treason laws? I’ll become an admiral earlier! And change even more worlds!) The importance of Uncle Aral being Uncle Aral isn’t just that he’s the Prime Minister when Ivan comes of age, though, or the ex-Lord Regent, or the man whose name inspire fear, loathing, and grudging respect throughout the galaxy. It’s that both Aral and Ivan’s father Padma were the descendants of Barrayar’s favorite historical Emperor, Dorca. So that claim to the Imperium Aral likes to tidily ignore? Ivan has just as strong of one, perhaps even stronger when one considers that Ivan is a handsome and strong young soldier never accused of murdering any wives or foreign governments or harboring any “mutie” genes. Ivan’s approach to the problem involves doing exactly what he has to and no more and generally playing as stupid as he can get away with. He may be charming and funny and have an enviable way with women, but “That idiot Ivan” and “Ivan, you idiot!” are recurring jokes throughout the series, though he has on many an occasion shown glimpses of greater depths. When his cousin-with-the-very-different-approach Miles asks if he considers himself an innocent bystander, Ivan sighs, God knows I try to be.”

Ivan’s always a supporting character, though A Civil Campaign is partially from his point of view. But like all the best supporting characters, he never quite just supports. He intrigues and distracts the reader, inspiring questions and speculation and strong opinions.

Basically, Ivan has his own book!!!! 😀 😀 😀 And there’s more Vorkosigan Saga!!! 😀 😀 😀 But also, if you like really character-driven, character-centric series, consider picking up the Vorkosigan Saga even if you normally don’t care for science fiction. There are many possible starting points, and I’m happy to advise if you give some indication of your usual literary preferences, but they really have a lot more to offer than the covers or publishing company might suggest.

A side note for any pre-existing Vorkosigan Saga fans out there: yesterday I found out that I’m allergic to a class or two of sedatives and I have idiosyncratic drug reactions. (Well, yes, Kelsi and Lizzie probably could have helped them figure that out a bit faster, but somehow the dots didn’t connect that Benadryl = sedative until it was a bit on the late side.) Those phrases seemed vaguely familiar but it wasn’t until I was reading about CVA this morning that it clicked. Miles! At least I didn’t recite Richard III in its entirety, so my parents were spared what poor Duv had to endure….