A little more desperation than whimsy these days

Hi everyone,

This is pretty much the long version of my Facebook status update about my being sick and unable to come back to Bryn Mawr for the fall semester.

I’m writing this because I’m realizing that opening up about all this feels good…and is also really necessary at this point. It’s also an easy way to communicate what’s been going on to a lot of people at once.

So, I’m sick, and I haven’t really been talking about it to most people, and I realize I’m at the point where I kind of need to. First up, let me say that I don’t have cancer or anything fatal. But I’ve been sick for a little while too long to just not mention it. (Also, this is a disclaimer saying that if mentions of vomiting make you squeamish, you should probably not read this.) (Also, this is totally tl;dr. Sorry about that and really don’t feel obliged.)

Some of you (mainly Oxford people) know I got sick in May. At first, it looked just like a regular stomach virus – there was one going around Teddy Hall, according to the nurse, and my symptoms seemed to match it perfectly. The virus seemed to have two durations – some people (lucky, lucky people) had it for 24 hours and some people had it hang around a little longer, maybe a few days. By the time I saw the nurse, it was clear that I was in the latter group, but that was okay – nothing really to be worried about, whenever I got a stomach bug it always lasted longer in me than most people. But by the time I saw the nurse for a second time, having had the virus for more than a week, it was beginning to look like something more was going on.

This wasn’t the first time I’d had something like this happen. The summer before 7th grade, I got sick on a trip, got better for a few days when I got back, and then got far worse. I ended up being hospitalized after throwing up for about ten days. I was better for a few days after that, but then I kept getting sick again. That summer, I spent more days throwing up than not and had trouble finding medications that worked (or I could keep down.) The doctors ran a lot of tests and found some things that were off, like the amount of time it took my stomach to empty during an episode, but nothing to explain why those were wrong. Eventually, I started slowly getting better, though I still had some episodes and my energy was considerably lower than usual. I had a similar recurrence the following spring a little while after I had a concussion, and again eventually things went back to normal.

Normal for me, that was. Over the last six months, I’ve increasingly become aware of the fact that “normal for me” really wasn’t all that normal. To begin, my parents, a variety of friends, two doctors, a nurse practitioner, and a dietitian have all confirmed that your stomach shouldn’t hurt after eating. Mine has hurt after eating as long as I can remember. (Just a little PSA: anytime you’re talking about things in terms of “normal pain,” it’s probably not so normal.) In addition, it’s increasingly looking like I’ve just thrown up way, way, way more than normal – it’s not really normal to have every head cold, delayed meal, or sensory overload end that way. (Or to have all too many airplane rides, movies that should have been shot with steady cams, or late nights do so.)

So, this summer I’ve been really quite sick. There have only been a handful of days where I’ve felt totally well. However, I have had spells of nearer normality – I’m often able to eat in the morning and afternoon, only to begin throwing up in the evening. I should probably mention that when I say I’m throwing up, I don’t mean once or twice, unless it’s preceded by a “barely” or “just once” kind of disclaimer. I’m talking more like throwing up fifty times an hour at the peak. (Yeah. Not fun.) I’ve also had a lot of dizziness, vertigo, sensitivity to light, visual changes, and other migraine-like symptoms during my “episodes.” At first, my doctors thought I had post-viral gastroparesis (delayed stomach emptying), thinking that the neurological symptoms stemmed from my dehydration and lack of nutrition, and that I had a handful of food allergies/intolerances/sensitivities that had been causing the stomach pain in between. A gastric emptying study showed that, while I may have clearly been exhibiting gastroparesis during my episodes, I didn’t have it all the time. (There should be less than 10% of what you ate in your stomach four hours after eating, according to my test results. I had nine on the day of the test, but I’ve also had episodes where I had enough to throw up for three hours straight when my last meal had been six hours previous. Or when I threw up clearly identifiable food from the previous night first thing in the morning.) So, it appears whatever I have, it’s of some kind of episodic and cyclic nature. Put that together with my neurological symptoms and a family history of migraines and it’s possible that I have some kind of severe variant of cyclic vomiting syndrome – well, it actually looks like I definitely have some version of that normally, so it’s a matter of seeing whether this current stuff is part of it or not.

I’m going to see what amounts to a sub-specialist at California Pacific in San Francisco in about a month, so hopefully I’ll get more of a diagnosis and plan for treatment then. (Yes, it was originally Stanford, but my GI doc suggested Cal Pacific because the motility program is much larger there.) I’ve been working with my internist and gastroenterologist locally and will continue to do so. After ending up in the ER and hospital three times in less than two weeks, and having lost way too much weight, I’ve ended up on a nasojejunal (NJ) tube.

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Maybe I’ll write some other time about that experience. I’ve had it for a little less than a week now, and it’s been interesting. I’m not saying it’s like having a permanent visible disability (it helps a lot having the knowledge that it’ll be gone, hopefully in a couple of weeks

It’s been a rough summer, especially since even when I’m not in the midst of an episode, I’m usually recovering from one and therefore exhausted and not able to function like I’m normally. It’s meant that my summer (and the end of my final term at Oxford!) has been spent disproportionately in bed. (Or a doctor’s office. LOTS of doctor’s visits.) I’ve listened to the Harry Potter audio books a lot while unable to read or watch TV, so that’s been fun. J And I’ve discovered some awesome new foods – almond butter? Yum! Buckwheat vegan cookies? The best! But there have been times when it’s been really frustrating and I haven’t wanted to talk about it, especially since I see and hear my friends off doing fabulous, worthwhile things and I gave up on being able to even prep for the GREs a couple months ago. Plus, there was the whole coming to terms with having to take a semester off. (It was supposed to be a great semester! Reuniting with my friends after study abroad, thesis, all the special senior stuff! Still, when you’re sick….) It has also been isolating. A lot of that, to be honest, has been self-imposed – I haven’t felt up to seeing people and I’ve avoided communication to a certain extent because I wasn’t ready to go through telling people about how sick I was, but I was still too sick to not explain. It also takes energy to interact with people, and that’s energy I already have. But I’m getting over that and coming to terms with this illness. So call me! Or Skype or write to me or stop by to visit if you’re in Chico!

Love,

Jordan

(P.S. Sorry for the tl;dr-ness. I did not realize it would happen quite like that!!!)

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