What Doesn’t Kill You (Makes You Stronger)

It’s a cheesy pop song, but the sentiment is always a helpful one to keep in mind, and I’ve been listening to this over and over. (I’ve been listening to quite a bit of music lately, as it’s nice to have some other sounds to cover up the whirring of my Kangaroo Joey pump.)

I’ve been writing about my experiences with this illness quite a bit lately, something that a number of family members and friends have encouraged. It provides a record and a way to organize my thoughts and express my feelings. And between my blog and my journal entries, it might become something. It’s perhaps hubristic to  think it at this point, but maybe I’ll write a book about my experience someday. (Writing books seems to be one disease that I have a clear family history of, anyway.)

Here are some (lightly edited) selections from my journal:

11/12/12 (at Cal Pacific, before and after my appointment)

It’s funny, going into this appointment knowing it won’t provide complete answers. At least this way I won’t be disappointed. More progress on the search is always good.


I counted and this is my fifth time here, and the fourth in two weeks. Pretty “good” considering we don’t live here.


In the waiting room at Dr. Shetler’s office now. It’s funny how they always have you fill out the symptoms sheet — I’m not sure if you’re supposed to put them for currently or in general or ever…? Presumably it would be currently (thought that begs the question of how currently), but it includes symptoms like “ever refused for a blood donation.” I did a sort of mix, I guess. (It’s not like I’ve had a latex reaction since Thursday, but I circled latex sensitivity anyway.)

I feel like I spend about half my life in waiting rooms and I’m still not quite sure what to do in them. Writing a private journal is a kind of odd answer, I suppose, but it’s working. I thought about crochet but I want to be able to get up quickly when they call me. I always feel awkward if the nurse has to wait.

The waiting room has quite a few people, but is quiet. I can hear my pump whir clearly. I think that’s a reason I’ve been playing so much music, and loudly for me. It still bothers me to hear the whirring during the day for some reason, even if I sleep through it easily. I hope the noise doesn’t bother anyone else too much. It’s not very loud, especially for those not right beside me. There’s nothing I can do about it, after all.

Wearing and carrying such a visible sign puts you on edge. You wait for someone to ask what it is. You wait for the stares, especially from children and elderly ladies. And you wait for someone to challenge your carrying a backpack into a store or to question “but you don’t look sick!” — those haven’t come yet, at least, and the latter actually arises far less with the tube than without. There are lots of different kinds of waiting when you’re sick, I’ve discovered, and they extend well beyond the eponymous room.


11/13/12 CPMC Pacific Campus GI Lab Waiting Room

So, to sum up yesterday’s appointment:

  • My weight is down a little more = bad (Knew that….)
  • I definitely have a long QT interval
  • Which means I can’t take even more meds…
  • Including ZOFRAN!
  • Also all TCAs and Erithromyacin (Explanatory note: non-GI meds that are used for quirky neurogastroenterological and motility issues, somewhat experimentally)
  • (But if we get desperate, I can go to a cardiologist to see if I can get clearance)
  • I am going to start B. (a med we’re using sort of experimentally) slowly tomorrow
  • I’m supposed to call Thursday’s morning to let her know how it’s going. (Did that)
  • (“You know you’re very sensitive to drugs when….”)
  • Stillsobaffling
  • I need an EGG to see how the electrical currents of my stomach are off…
  • (because they must be)
  • ….so we can see if they match any known patterns…
  • …and how those were treated.
  • She wants to see me more frequently, ie next week. (Tuesday)
  • And for me to have gained TWO pounds by then. (That’s going to be tough unless I start keeping, you know, actual food down.)
  • I’m supposed to try small volumes of food 3x day.
  • Then the idea is to try to work to where I only need the tube for night feeds…
  • …and then not at all!
  • Next week we’ll decide about an antroduodenal manometry test (which is not the same as the Barostat I had, though similar) to check my small bowel function
  • But my response to feedings doesn’t necessarily seem to fit with CIP (Chronic Intestinal Pseudo-Obstruction)
  • (The loose stools are normal)
  • And she’s concerned about radiation exposure
  • (Since I’ve already had quite a bit of it)
  • She’s reluctant to expose me to more if it’s not necessary
  • So, basically, I’m pretty baffling
  • But there are still things we can try
  • We didn’t talk about the paralysis
  • But I think we will next week
  • If only because I plan to bring it up
  • Since that is till in play and needs to be addressed


We saw Dr. Shetler as we checked in. She asked how last night went and we told her not fabulously — hard/projectile vomiting followed by an hour of paralysis. Oh, because, yeah, another one of those last night. We think they’re more likely to happen after exhausting days, which yesterday was.


It’s funny, but it’s increasingly seeming like it’s not so much that they’re going to find out that I have Disease X or Syndrome Y as that they’re going to discover some new disease in me. And then invent a treatment for me. (I have confidence that they will.)



I have no idea how the test went. I watched the little squiggly lines move around – and they certainly moved a lot when I got nauseated — but I have no idea what they mean. Hopefully they do mean something and I’ll find out next week.

(Oh, and I threw up the Glucerna they gave me. Typical.)


11/14/12 Home

If it’s not one thing, it’s another.

Ostensibly, most of today was good. After all, I didn’t start vomiting until after dinner, keeping in breakfast, lunch, and afternoon snack p. o. (by mouth), all while tolerating (again, ostensibly) 50(!) ml/hour.

My intake:

1 bowl hot rice cereal (1/4 cup dry cereal cooked in 3/4 cup almond milk; maybe about a tablespoon of maple syrup)

3 TJ’s rice pancakes with raspberry jam.

1 small (6 oz?) bowl pureed soup + 1 rice cake

Jevity 1.2 at 50 ml per hour.

(Hey, look, I’m being all food blogger-y and listing what I ate all day! Sorry no photos, I’m sure you all are just dying to see an SLR shot of Jevity.)

Today was officially the day I started trying some “treatment.” I took 5 mg. B. 30 minutes before breakfast. I kept breakfast down, but I had a stomach ache after — not sure if it were the B. or volume or bolused water or…?

Rest of the morning was uneventful in GI terms.

While I ate breakfast, Mom got a phone call from Dr. Shetler. She talked to a neurologist friend of hers, because she is v. concerned about the paralysis, and he thinks they sound like seizure activity. She asked what kind of neuro care I was getting here (Mom said basically none) so Dr. S. said she was happy to refer me to a doc at CPMC. I got a call later from Pat the nurse at the motility office and she told me they were trying to get me in next week and would let me know on Friday.

I take this all as good news/bad news. Or rather, reassuring news/scary news. I have wondered all along about the projectile vomiting and pointed out that I feel weird before the paralysis sets in — before the vomiting, even, I sometimes have visual changes.


So. Dinner. It was a different pureed soup, this time a bit thicker, with more meat and veggies. The texture felt very heavy and filling — my stomach must have shrunken by now — and it was really too much for me to handle. It managed to be unappetizing despite a nice flavor. I didn’t even make it through half a bowl, though I really tried. I felt the need to “wash” the feel a bit and wanted more kcal and taste. I tried about 2 oz. of my dad’s root beer, well stirred to get any bubbles out. It was quite nice as something different.

Went to watch TV in the living room. I started throwing up. Okay, no one’s shocked, especially as I hadn’t been hungry for dinner. Then I started getting bad lower abdominal cramping and had to hurry into the bathroom. Considerably amounts of diarrhea (sorry if this is TMI! but I guess if it is, probably so is the rest of my health-related writing) — not just unformed stool, but progressively more and more watery, like with a virus, food poisoning, etc. Okay. Detached from the pump (couldn’t take it with the cramping.) It continued. Vomited more, got just to stomach juices at some point. According to plan, we got some rehydration in via the tube, but I could only tolerate so much.


11/15/12, home

427 ml overnight. Also, I threw up overnight. (Looks — and tasted — like bile.) It took forever to get back to sleep and I had some bizarre dreams.

More diarrhea this morning. And I feel like even more is coming. I’m currently disconnected, but I’ll have to reconnect in a short while. It’s not as bad as throwing up all the time, but the volume is a bit…troubling.

Weight is down. OMG, I have to gain 2.6 pounds by TUESDAY! Hopefully some of yesterday’s loss is just water/hydration loss from last night. This is a new all-time low (for being a grown up and this height and all.) Not good at all…I’m not sure how to reverse things and go in the other direction unless I’m able to eat more (and absorb it.) I don’t know what I’d do without the tube right now.


The big question is whether the B. is causing, or aggravating, any of the diarrhea. I’ts certainly not a common side effect from what I’ve seen, but I’m also using it in a weird way for a weird thing…and I just have weird reactions to drugs in general. I guess we’ll talk about this on Tuesday + I have to call the office to check in in a little bit.


So, yeah, it adds up to quite a bit!

In case anyone’s curious, this is my tube and backpack set up. The tube goes from my jejunum (small intestine) up and out my nose and then connects to a line leading to a pump and feed bag in a backpack.


In bookish news, I’ve been reading the Montmaray Journals. I think I first saw them mentioned by Claire. A delightfully literate (without being mousy) heroine, princesses who actually do things, fictional royalty and fictional European countries,  late 1930s/1940s in Britain, London, aristocratic Bolsheviks, and siding with the Republic in the Spanish Civil War = right up my alley! I finished the third and final book, The FitzOsbornes At War, last night and am a bit sad to be through the series. I’ll just have to reread!

Grey’s Anatomy has an episode about a patient with Cyclic Vomiting tonight. I don’t usually watch the show, but I’m excited to see it. It should be great for awareness! You should all watch!



Thanks for all the lovely birthday wishes!

My first day as a twentysomething — actually a twentynothing — went well.

The beginning proved less than smooth, as I woke up with stomach pain and was sick for a few hours, but despite my early fears, I did not have to spend my birthday feeling poorly. (Or in the hospital, which was my big fear when my mom momentarily thought my tube had clogged again. Thankfully, it proved a false alarm.) I recuperated in time to take a lovely phone call from my Aunt Edie, whom I talked to for quite a while. I was able to drink ginger tea for lunch, which left me optimistic that I could still manage birthday cake later. The only lingering effect I had of the episode, or whatever it was, was that throughout the day my stomach was severely distended. It’s probably visible in some of the photos, sorry.         (On the plus side, it did help keep my skirt up….)

In the early afternoon, I heard the door ring and my dad called out that I had visitors. It was Kerstin and the girls! My dad had actually forgotten to tell me that they were coming, but it worked out better that way because it was a most fabulous surprise. I got to spend a few hours talking and laughing (not to mention playing) with three of my favorite people. And yes, I spent a good chunk of my first afternoon as a twenty year old playing hide and go seek. I couldn’t imagine a better way. Really, I think adults forget all too easily how much fun playing is.

I rested for a little bit after the visit, before joining my parents for a wonderful birthday dinner. I had snacked on some rice cakes (decorated with dried fruit and gummy bears, birthday cake style) Kerstin brought over and my stomach was doing well. I decided to go for it and tackle the planned birthday dinner. We had brown rice spaghetti with grilled chicken sausage, zuchinni, onions, and a little light lemon juice (which blended in perfectly)  and roasted butternut squash on the side. It was absolutely delicious. The pasta was incredible — I’m not sure exactly what all was in there in terms of spices (I know I’m leaving out some things), but it was wonderful. We all decided that we liked the brown rice pasta better than wheat pasta, too. It has a better texture than most wheat pastas (more like freshly made pasta, in my experience) and a better flavor. I think it could be a nice alternative to whole wheat pasta if someone doesn’t like that but still wants whole grains, or just a wonderful, easy option for pasta lovers in general. The butternut squash was delectable as well — fall is coming. (That sounds so much less foreboding than “Winter is coming,” doesn’t it?)

After dinner, and a break to allow my stomach to settle and Mom to “frost” the cake, we settled into the dining room for dessert and presents. The cake, which I referred to on Monday, turned out beautifully. I’m referring both to flavor and appearance, of course. Our substitutions for the cake part itself weren’t major, as I’m now eating gluten. (That would have been a more complicated endeavor!) Still, we swapped out almond milk for cow’s milk and Earth Balance for shortening with no ill effects. If there were any remaining almond flavor, it was insidious enough to please my father. The Earth Balance did make the “yellow cake” (made from an old, simple recipe book of my grandmother’s) more white than yellow. I also think it made it a bit fluffier, and therefore less dense, than shortening would have, but I found the texture very nice.

Frosting initially presented a more considerable challenge. Normally, I would go for a chocolate frosting. (Naturally.) However, I’m avoiding chocolate both because it hurts my stomach and because it’s one of the most likely triggers for my neurological problems. I hope to add it back into my diet someday, but I recognize that chocolate is perfectly acceptable sacrifice to make in the name of health. (Why can’t Harry Potter’s laws of the universe work in reality? Chocolate totally should have magical healing properties.) I’ve never been a huge frosting fan, and making a vanilla-type frosting with Earth Balance held no appeal. So, instead, I turned to a recipe my friend Janosz had introduced me to on Smitten Kitchen. We had made this raspberry filling for Kelsi’s birthday crepe cake. (Layers of buckwheat crepes, honey-sweetened raspberry filling, and homemade chocolate ganache. And no, it wasn’t just the ganache that was homemade — it was actually the chocolate. It was a  gluten-free, egg-free, soy-free, dairy-free, cane-sugar-free mound of divine goodness. I wish I had pictures to show but I realized that while I took about 5256000 of them during every stage of the process, they’re on Kelsi’s camera. Trust me, all of our friends were skeptical that the allergic Kelsi was able to eat it, it was that good.) My saint of a mother even strained out the raspberry seeds. It made a beautiful “frosting” that complemented the cake beautifully. This is a recipe I plan to keep around regardless of what my dietary restrictions become, as it absolutely trounces most frostings, in my opinion.

So, with a scoop of raspberry sorbet, we had a cake that I was able to eat and enjoy. Eating, and eating things I enjoy, on my birthday has been a major goal for me. I really wanted to be able to indulge in a piece of birthday cake. It’s funny, because if I had been at school I might not have even eaten cake literally on my birthday, but it took on a whole new importance here at home. I’m very happy to report that I succeeded.

Now, for the pictures!

Outfit for the day. Also, you can see my present. 🙂

Berry straining


Saturday Farmer’s Market + Downtown Chico

One of my favorite things about returning to Chico, my charming hometown in Northern California, is the Farmer’s Markets.

There’s community.

There’s food.

Beautiful food.

Glorious food.

This is what tomatoes are supposed to look like.

At the farmer’s market, I can get Chris’s eggs.

They are seriously the best eggs I’ve ever had.

And Chris is a great guy, too. He’s always ready to greet you with a big smile and a fantastic Yorkshire accent.

I also got my almond butter there.

A while later, I headed back downtown with my parents to run some errands. (Good days, how I love you.) After visiting Campus Bicycle, where my dad’s bike was being worked on, we came across the a local festival that was going on.  We ran into several people we know, including Ann Schwab at the “Meet the Mayor” booth. 

We came across this great ice cream cart, normally found at the Thursday night farmer’s market. Spoons Chico makes vegan (and hence lactose-free!) ice cream. Unfortunately for me, it’s made with coconut milk and while I’m not allergic to it, every time I’ve tried coconut milk or other coconut products, my stomach has been in pretty severe pain and I usually have an episode. (I first noticed this when a friend of mine was doing a food challenge with coconut and the dishes seemed to make my stomach hurt more than usual. Since coming home, this experience was further confirmed by some attempts to use coconut as a dairy-alternative.) My mom tried some, however, and said it was absolutely delicious.

I talked with the proprietor (you can read his story here) about non-dairy ice creams. He said he’d experimented with almond milk and almond butter before. I’ll keep an eye out for if he does so again!

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?