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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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