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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