What I didn’t eat Wednesday….

Also the blog of the books I haven’t been reading and the places I haven’t gone and the things I didn’t do.

A lot of bloggers participate in this roundup called What I Ate Wednesday, showcasing their meals for that day or (more typically) one of the previous two, as well as typically talking about their daily activities.

Well, I didn’t eat this:

c. last Thursday. Also pretty much half of my good nights.

Or this:

c. Thursday as well.

Or even this:

c. Saturday morning

I mentioned in Monday’s post that, despite initially thinking Saturday was a good day, I got sick Saturday evening and had been feeling poorly since then. Well…that hasn’t really stopped. This “episode” has just dragged on (and on and on and on.) Barring a four hour window on Tuesday when I managed to get some medicine to work, I haven’t been able to eat anything. For the last couple of days, despite not being hungry, I’ve been trying at my parents’ behest, but it just hasn’t worked.

I’ve had episodes this bad before, but leaving aside the ones in Oxford (when I was still in the initial stages of this illness and had a body more able to withstand this kind of thing), I’ve always ended up in the hospital from dehydration by this point. The good thing about my NJ tube is that it has prevented that from becoming a necessity again. (Avoiding the hospital = very good thing.) But it’s also kept me kind of floating along just before that stage. I’d put on a few much needed pounds in my first week and a half with the tube, but in the last few days, they all came off. I’ve been popping Zofran like candy and while it has provided some relief, it hasn’t substantially changed things. (Zofran is the anti-nausea medicine usually given to chemo patients, for what it’s worth.) I tried another medicine that I’d had a less than fabulous reaction to previously (out of desperation, really) to no avail.

Knowing that things couldn’t continue like this, we contacted my doctors yesterday. The resolution that came last night.

1. I have a new medication, which I think will work.

2. I’m supposed to wait on trying food until I feel really ready for it, instead of trying every couple of hours. My doctor agrees that it’s just counter productive at this point.

3. I’m going to have feedings during the day, as well as at night, until I can eat some. I’m not getting enough in by only having it at night (as proven by the weight loss), particularly since my overly sensitive gut will only accept a slow drip.

I’m not crazy about the idea of being hooked up to the pump 22 hours a day. It restricts my mobility considerably and I’m usually happy to be rid of it. I won’t be leaving the house for the time being. But it’s much better than tearing up my esophagus and stomach or wasting away or being confined to a hospital bed. Hopefully, it will only be for a day or two.

Hooked up, yo. (Sorry about the wet hair.)

Reading has been difficult in this condition. I’ve found it difficult to concentrate. I reread a couple of light novels, The Second Assistant and The First Assistant. I read a bit more of Exile’s Return, but I’m really saving that until I’m feeling a bit better. I read Flight of Betrayal (written by a family friend; copy received for free), which was a quick read. It’s not very much considering the number of hours I’ve spent in bed not really doing anything. I don’t want to read anything too heavy and I don’t want to read anything too “precious,” if that makes sense. I’m saving the other Isherwood novella, for example, because I want to be able to savor it, to revel in it, and to really appreciate it. I’m not up for that right now.

Any suggestions for easy reads?

What do you like to do when you’re sick?





An Awfully Small Adventure

Guess how I spent my Friday?

If you guessed, “At Feather River Hospital, getting her feeding tube unclogged,” you would be right.

Yeah. So. Basically, every medical person (nurses, GI tech, intervention radiologist, gastroenterologist) who has looked at my tube has commented on how narrow the gauge is. The feeding solution is rather thick, and because my tube goes straight into my small bowel, the rate of feeding is rather slow. Apparently this is a perfect storm for a clogged tube, even with flushing it out with water before and after each use.

I woke up at 7:15 Friday morning to the sound of my pump beeping. It announced, in rapid succession, that the tube was clogged and the feeding was complete. My mom attempted to flush the tube (push water in using a syringe) to no avail. The syringe barely moved. I, in the meantime, was fighting off the beginning of an episode by taking Zofran, my anti-nausea medicine. (It’s the stuff used for chemo patients and more effective than anything else. Naturally, insurance doesn’t want to cover it, because $2 a pill is so much more than hospitalizations.) My parents called the home health nursing service that set up my pump and the nurse on call said to try aspirating. That didn’t work, so the nurse who had first hooked me up came out. She tried aspirating much more vigorously, following the gastroenterologist’s instructions, still to no avail. We didn’t have the small brush that the doctors often send home with feeding tubes, so there was nothing more we could try at home. The nurse called the gastroenterologist at the hospital (the partner of my usual gastroenterologist) back and he said to come straight up to the hospital and check in with same day services.

So, at 9:30 or so, my parents and I packed up and made the thirty-minute drive up to Paradise, a process with which we have become intimately familiar. We seem to be unfortunately frequent visitors at both the hospital here in Chico and the one in Paradise. We also have packing for the visits down to a science. We arrived in smoky Paradise and went into check-in.

It’s a lot of fun when one of the women at check-in greets you like an old friend. Even more so when the second one is not far off.

I got checked in, but as I didn’t have a scheduled procedure so much as a “let’s squeeze her in sometime today,” I had to wait about an hour and a half before actually heading into same-day services. I went with my parents to the cafeteria, where they had a snack (that ultimately ended up being breakfast.) I didn’t have anything because I was still (successfully!) fighting off an episode and not hungry.

We made it to same-day services at last and got checked in. Feather River’s gowns aren’t quite as enormous as Enloe’s, but we all agree that they really need to just go ahead and give me pediatric ones. They hooked me up with a pretty trippy teddy bear.

My dad was super excited when he saw SDS. Slightly different SDS than you automatically think of, Daddy. I don’t think Kirkpatrick Sale ever wrote a book about Same-Day Services.

Of course, “You’re next” was relative. I spent about three hours chilling in the hospital bed in the SDS prep area. (I think the bear actually indicated I was next to see an RN.) It turns out that I’m totally (in)famous in Same-Day Services.  We were chatting with a nurse about how patients will remember them but they usually don’t remember patients they’ve seen quickly one time when another nurse came over. We all recognized her easily, because she was the nurse who took care of me after my endoscopy. She immediately asked if I were having sedation. It turned out I wasn’t, and didn’t need an IV (over two weeks without one – that’s what we call victory.) She immediately said good and told the nurse filling out my medical info to put that I was allergic to Versed. And Benadryl. And basically not an easy person to sedate in general. I had a very adverse reaction  to Versed, the sedative used for my endoscopy, the last time I was in. Apparently it was pretty memorable. (I basically had trouble moving or seeing and was having issues with breathing and staying conscious. They had to page my doctor to get an order for the reversal agent and had a hard time tracking him down. No big deal.) So the nurse who’d taken care of me was very eager to make sure I wasn’t given Versed again and that it was noted all over my file and my arm and everything.

The sign only says latex, but they were running out of room to write all my drug allergies on my wristband.

I’ve also decided that I need to bring my own tape whenever I go to the hospital. Not only am I sensitive to latex, but it turns out I’m also sensitive/allergic/some kind of rashy to tega-derm, the clear latex-free tape they use to pin down IVs and things like that. At least I can handle cloth tape, thankfully.

So, after about three hours, and some good conversation with one of the nurses who remembered a story of someone locally who had a similar condition to mine, another nurse came to wheel me off to the GI lab. Of course, when I got there, the doctor was still finishing up with another patient, so I was waiting in the hall for a few minutes. Funnily enough, the GI lab is right next to where the intervention radiologists work, and I saw the guy who put my tube in the week before. He stopped to ask how I was I doing and I told him about my tube getting clogged. Soon enough, I went into the GI lab and met Dr. Mansell, the gastroenterologist who was in the hospital that day. (Nice guy!) He was able to unclog the tube with a lot of a hot water and pulling back and forth and repeated flushing. I was thrilled that I wouldn’t have to have the tube replaced. The unclogging experience felt pretty much fine – just some slight nose discomfort – and I actually managed to keep up a smile through most of it. Three cheers for positive thinking, huh? The doctor did warn me that the tube was narrow and even with conscientious flushing, it will eventually get clogged beyond repair. My hope is that by that point, my condition and weight will have stabilized and I’ll be able to get the thing out.

I came back to the “recovery” area, but because I hadn’t had sedation, my recovery was mostly a matter of waiting for discharge orders. My fame continued – the nurse (a different one than before) said it was nice that I didn’t have sedation and could leave pretty quickly, and I agreed, mentioning that I’d had it for my endoscopy and ended up staying in recovery a few hours because it didn’t go well. She instantly exclaimed, “Oh, you’re the Versed Girl!” Apparently, they talk about me. (My reaction was a textbook adverse reaction, but apparently they’re pretty rare?) She also gave us some more tips about ways to flush the tube and how to take care of it – her little girl had had an NG tube as a toddler, so she knew what we were going through. I also received further confirmation that I should bring my own tape to the hospital, because it came in handy when we had to re-tape the tube to the side of my cheek.

When all was said and done, by the time my dad and I made it home (dropping Mom off for the last few hands of Mahj Jong!), it was almost four-thirty. I think we were all fried. On the plus side, I had successfully fought off the nausea attack and my stomach was feeling good, if hungry. That night I managed to eat a massive amount of Pad Thai. (Sorry, no pictures. I brought my camera but I was so tired, I forgot I had it.)

We’re now flushing with cranberry juice and warm water in the hopes that my tube won’t clog again. Fingers crossed!


On another note, this weekend was a prime example of why I need the tube, unfortunately. I was fine Saturday morning and afternoon, but I got sick after dinner. I was sick all day yesterday and I’m still not doing well this morning. If not for the tube, I wouldn’t have gotten in any food or fluid for over twenty-four hours.

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!

Buckwheat Chocolate Chip Cookies

After a few rounds of testing, more testing, trials, and more trials, I don’t seem to be gluten intolerant. Blood tests and biopsies from my endoscopy cleared me for celiac’s disease and if I have any kind of non-celiac gluten sensitivity, it is both not what is causing my current problems and much less than any number of other sensitivities I have. For the most part, my stomach seems to do best with rice, then wheat and buckwheat, and then not so well with other grains/starches/carbs. I’m eating some wheat again, but I have a few recipes and products from my experience of going gluten free that I love and plan to keep in my diet.

These cookies are definitely one of them. Provided I can eat chocolate again, which I currently can’t. (I’d better be able to eat chocolate again. I mean, it’s chocolate.)

Personally, I think these are the perfect allergy-friendly cookie. They’re not just gluten free, but also egg free, soy free, dairy free, casein free, and lactose free. As far as I understand – always do your own research if you have allergies and sensitivities – they should be appropriate for a gluten free, casein free (gfcf) diet. They’re nut free and peanut free and low in refined sugars. I think you could make them (cane) sugar free as well pretty easily, a la Kelsi, if you used a chocolate otherwise sweetened. (Trader Joe’s carries one made with honey!) They’re actually grain free, of all things – buckwheat is a seed and a pseudo-grain, not a true seed. (Hmm, I wonder if they could potentially be kosher for Passover, then? They sure taste a lot better than the Kosher for Passover cookies I’ve had from packages!) Plus, they’re made with buckwheat, which packs quite the nutritional punch. I think this is a great recipe to introduce people to buckwheat with, as the cookies don’t have as strong of a buckwheat flavor (some love it, some hate it) as crepes or pizza dough.

This basically a de-glutened version of Live. Learn. Love. Eat’s  cookie dough recipe here.  She calls them mini cookies, but I think of them as pretty standard home-made cookies in terms of size – of course, I didn’t eat just one.

Buckwheat Chocolate Chip Cookies

Makes 36 cookies.

Dry ingredients:

2 cups buckwheat flour (I used Arrowhead Mills organic)

1.5 teaspoons baking soda

½ Teaspoon sea salt

¾ cup vegan chocolate chips or chocolate chunks (I used Trader Joe’s chocolate chips)

Wet ingredients:

¾ cup maple syrup

2/3 cup canola oil

1 teaspoon vanilla

Preheat the oven to 350. Mix the buckwheat flour, baking soda, and salt. I used a silicone spoon (good for avoiding gluten cross contamination!) but a wooden spoon would work as well; this recipe mixes easily without an electric mixer, if you’re short on one. Mix in the canola oil, maple syrup, and vanilla until combined. Add the chocolate chips. The dough will be darker than typical chocolate chip cookie dough.

Drop 36 portions onto a baking sheet lined with parchment paper. A melon baller makes for the perfect size. These cookies do not naturally flatten as much cookies with wheat flour; either press down or enjoy puffier.

Bake for 6-8 minutes or until done. Color is less of a guide than with wheat, as buckwheat is darker, so consider checking with a tooth pick. Allow to cool and enjoy!

(I’m sorry I don’t have pictures of the completed cookies. I didn’t take any when I made these before and I’m not going to torture myself with chocolate chips to get some.)


Finished American Studies. Almost finished with An Infamous Army. Started reading Malcolm Cowley, Exile’s Return. Had quite the day today — there’ll be a story tomorrow or the next day.

Does this dressing change make my nose look fat?

Much needed. After a failed attempt to change it at home with my mom’s help, I went ahead and got it changed by a nurse in the radiology department at Enloe on Tuesday. I thought I’d be able to do that at the radiologist’s office, but they sent me in to have it done by a nurse at the hospital. (A brightness in all this sickness: the medical personnel I’ve dealt with have been fantastic in so many ways. More on that another time.) The nurse managed to remove the remnants of the old dressing from the tube, though he had to use a scalpel. No wonder my mom and I struggled!

I like the new set up. It feels more secure than the old one and I notice the dressing less. The last thing I want is for the tube to come out accidentally. (Mainly because the real last thing I want is to have to go through the insertion process again. Or to get sicker.)

At this point, you might be wondering – or have resorted to Googling – what an NJ tube is. A nasojejunal snakes through one’s nose, down the esophagus, beyond the stomach and through the first part of the small intestine (duodenum) to land in the second part (the jejunum.)

I get fed for twelve hours per day, mostly overnight, via my NJ tube. I have a prescription for a special formula (Jevity) that provides me with necessary protein, carbs, vitamins, pre-biotics, and, most of all, calories. The tube goes into my jejunum, rather than stopping at the stomach like the more common nasogastric (NG) tubes because my problem isn’t with eating, but rather with keeping food down. I’m still eating as much as I can in addition to the tube feeding, but the tube provides a supplement and back up. There are great days, like Tuesday, when I get in three meals and some snacks. There are also days like Monday when I keep in some lime jello and a single cracker. Or less. The tube helps.

I’ve had the tube for a little over a week now and it’s been a trying process.

Hooking things up. My parents rock.

To begin, it hurts. A lot, at first. Maybe I’ve become a wimp, but the physical pain from the tube had me in tears on my second and third days with it. My sore throat was worse than the pain from having my wisdom teeth out, for comparison. I do think this was a slightly abnormal experience for a few reasons. First, the insertion process was pretty difficult – it took the intervention radiologist longer than he said to expect – and that involved a lot of scraping in and out. Second, there have been awful fires nearby and the air is smoky, especially in Paradise, the town where I had the tube put in and met with a dietitian. Third, I’ve been dealing with a sore throat anyway, as part of my lovely condition.

It can also hurt to feed, depending on how it’s done. The first night, before we got the pump, we attempted to push in Ensure with the help of a home health nurse. That’s fine for NG tubes, from what I understand, since it’s just like drinking eight ounces, but it’s awful for NJ. My lay understanding of the matter is that your small intestine usually only receives foods a little bit at a time and when it gets more, it starts singing about revolution. Or at least mine did – dizziness, cramps, diarrhea, vomiting, all that good stuff – and I’ve heard it was a pretty typical experience. The pump feed goes considerably more slowly, and we’re inching it up day by day “as tolerated,” but sometimes my body forgets its Montessori raising and grows intolerant. The last couple of days we haven’t been able to raise the feed, unfortunately.

My pump, my pump, my lovely little pump

But there’s a less physical kind of discomfort that’s no less real. I hadn’t expected it, much like I hadn’t expected it to hurt like it did. The reality is that I have a tube sprouting form my nose and tape holding it in place. Everyone can see that and an awful lot look.

I know it’s not the same, but this tube has given me a tiny glimpse into the lives of those with visible disabilities.

Children stare. They often look worried. Babies stare less, other than in their usual way. I don’t think this is just self-consciousness on my part, since I’ve noticed a distinct difference between adults and children.

Adults smile at you more. Strangers can be suddenly very nice. Most, I think, kind of ignore it.

Visibility takes away your choice. You can’t just opt for medical privacy. If you run into someone you haven’t seen for a while and he or she asks how you are, you can’t just say “fine, thanks.” You have to tell the whole story. Having the tube forces me to come out.

In medical settings, even casual contacts know, or assume, that you’re the sick one, despite being young and otherwise fairly healthy looking.

Of course, I also know that it’s temporary. It’s a matter of a month or two, hopefully. The relief on knowing that is immense, especially in the face of the pain. People won’t see me this way forever and I’ll get my choice back. Some people don’t have luxury.

Still, having this tube has made me think.

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?

Library Loot 8/22/12

Library Loot is a weekly event co-hosted by Claire fromThe Captive Reader and Marg from The Adventures of an Intrepid Reader that encourages bloggers to share the books they’ve checked out from the library. If you’d like to participate, just write up your post-feel free to steal the button-and link it using the Mr. Linky any time during the week. And of course check out what other participants are getting from their libraries.

Georgette Heyer, An Infamous Army

I’m halfway through this one. Love, love, love it so far. I think it’s going to be one of my favorite Heyer’s — right up with Regency Buck. I’m going to have to try some more of her more meticulously historical fiction.

Christopher Isherwood, Berlin Stories

Goodbye to Berlin is one of my all-time favorite books. I wrote about it some as a guest blogger on another blog. I picked up this edition for his other Berlin story, The Last of Mr. Norris. I have high hopes!

Jo Walton, The King’s Peace

I have a bit more trepidation about this selection. I’ve recently fallen pretty hard for Jo Walton’s writing, but I often find it difficult to get into high fantasy series.

Louis Menard, The Metaphysical Club

This is for a class I’m taking locally. (I’ve got to keep my mind sharp!)

Louis Menard, American Studies

Ditto. I’ve read the first three essays (it’s a collection) and they’re enthralling so far. Reading about reading is definitely right up my alley.


In other news, I’d just like to say how much I appreciate the outpouring of support I’ve received in the wake of yesterday’s post. The words of support and inspiration people have passed on through Facebook, email, and so forth have meant the world to me. I had a doctor’s appointment this morning and my doctor commented on how I seem to be in much better spirits than when she saw me a week and a half ago. I think some of that stems from stopping a medication with cognitive side effects, and some of it from receiving more nutrition via the tube, but a big part comes from the incredible support I’ve received in the last few days since “coming out” about my illness. Thank you. ❤

Yesterday was a Good Day. I have them on a pretty regular basis, if not often enough. I was able to eat!

Brown rice pasta with tomato sauce and lean ground beef; steamed summer squash from the farmer’s market; melon from the farmer’s market; water with a straw (easier to drink that way with the tube.) I’m not gluten free anymore (lots of experimenting to find it wasn’t the problem), but I am eating more rice and less wheat if only because rice is more easily digested in the stomach.

Last night was rough and early this morning was rougher, but I seem to be over that bad spell. Fingers crossed I’ll get the rest of the day (and more) clear!