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….”)
- 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.)
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.
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.
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!