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


Some Like It Smooth

I had a good afternoon yesterday. I managed some lunch, a smoothie snack, and a bit of shopping. (I left the house. For non-medical purposes. Hours after the end of an episode.) I needed to pick up a few – temporary – things that fit right now. I backslid a bit in the evening. That seems to happen a lot after morning episodes, but I’m not sure what to do to prevent it.

Smoothies are something I’ve only started making since getting the NJ tube inserted. I experienced considerable difficulty swallowing during its first day or two, and smoothies were one of the few things I could keep down. I’m continuing them now, even though I’ve managed more solid food, because they seem easy on my stomach and they’re a good way to get some vitamins in.

so let’s turn up the blend till we…

This was yesterday’s selection. I blended a frozen banana with a bunch of frozen mixed berries (raspberries, blueberries, and blackberries), a splash of grape juice, crushed ice, and a good measure of almond milk. Almond milk is my favorite non-dairy milk, but I haven’t acclimated myself to the taste of it straight. I like it on my hot rice cereal in the mornings and I’ve used it to bake with, but I’m not crazy about simply imbibing. I want the calcium and vitamin D my almond milk is fortified with, so I’m looking for different ways to use it. (Any suggestions?) It worked really nicely in yesterday’s smoothie, so I think I’ll keep that up.

While ill, healthy takes on a new set of associations and meanings. Healthy isn’t necessarily about eating the cleanest, getting the most exercise, or eating lots of salad (though even while well those things can be taken to excesses!) Healthy, for better or worse, becomes not sick. In general, I am eating quite clean, because most of what I can eat is clean, and I react badly to some things that aren’t. (Nitrates, dear nitrates, we are not made for each other. Remember that time you gave me that episode with the worst neurological symptoms I’ve had in an episode?) Right now, my stomach is even more sensitive than usual, and some things I’ve always enjoyed are impossible. Sayonara sweet potatoes; it was nice knowing you. Lettuce and raw spinach? You can come back when you stop setting up camp in my stomach every time you enter. My vegetable consumption is mostly limited to summer squash right now. It’s a good thing I love that squash and it abounds locally right now.

(I have been curious about green smoothies. I wonder if blending the spinach might make it easier to digest. It would be nice to get those nutrients in. Does anyone have experience with this? I also wonder if you can make green smoothies using cooked spinach. My other concern would be one that might seem vain, but can be crucial when dealing with nausea: the color. I couldn’t face a brown smoothie at the moment.)

Exercise presents some similar dilemmas. My doctors have encouraged me to engage in some gentle exercise when I feel up for it, but for the last few weeks I most certainly haven’t. I’ve currently avoided the emergency room and admission to the hospital for almost two weeks. (Thirteen days. You better believe I’m counting.) I’m having shorter and slightly less frequent episodes. I’m receiving a nutritional base through my NJ tube at night and I’m getting food in by mouth as well. It seems like a good time to try to get moving a little bit and rebuild some strength. I think I’m going to try some gentle yoga in a little bit and see how that goes.

I’m still reading An Infamous Army and I’m almost finished with American Studies. You know you live in a slightly unusual household when you’re reading the latter at the breakfast table and your father walks in and exclaims, “I’m so glad you’re able to read something fun!” Having my mind back after stopping Reglan is nice.

What’s your favorite smoothie combination? Do you do green smoothies?

What do you do for gentle exercise?

What are you reading now?