Tuesday, September 15, 2015

A Day (and Nights) in the Life of a Cholestasis Patient (and Stay-at-Home-Mom)

If you're like, "Whaa? Chola-who?" there's this other post that I wrote. It's long, but the basics are at the beginning. And links to infographics and stuff.

I apologize for the length, for once again going on and on. You'd think a person couldn't write this much about one rather uneventful day. You'd think. If you don't want to hear lots of little details about my life and brain space at the moment, this isn't the post for you.

Most who know seem to say there is no "typical" ICP (Intrahepatic Cholestasis of Pregnancy) case or patient. Certain things are more statistically likely, sure, but... well, there's a lot of variation in several ways. On top of that, this isn't necessarily a typical day. It is... a day. Take that for what it's worth.


Wednesday, September 9th, 2015

Six weeks of Cholestasis down, maybe two to go

Took Benadryl last night, so actually got some good sleep. (For the sleeping pill factor, not the itching factor. My itching is caused by bile acids, not histamines.) Woke up once around 3 or something and felt very awake, was frustrated that this was even with Benadryl, but then... apparently fell asleep again. Yay! Woke up again around 7:30, then on and off back to sleep. Ribs hurting, but some sleep. Think I actually rolled over and checked my phone and Facebook notifications around 9:30. Thanks, John!

Oh, I forgot to do my kick counts. Was just thinking about Facebook stuff and whether or not what I have is really RUQ (right upper quadrant) pain or not. (For Is That a Cholestasis Symptom, or Regular Pregnancy?: The Bingo Game!) After John came in and changed Gracie's (Codename) diaper, I finished up with my phone, got up, went to the bathroom, got dressed, and started some water to boil for instant oatmeal. Hoping to eat a little before needing to take John to work. (We just have the one car.)

And... yes, Gracie is being cranky enough about putting her shoes on, I have plenty of time to eat this and to take my Urso pill. Bother.

Drove John into the city for work and dropped him off, instead of just taking him to the train station, as it's already so late. (He does work from home as well though, he's not just... late to work a lot.)

Took my left sandal off, brought the foot up to my lap, and scratched and scratched. Grateful my right foot didn't itch a ton in the car, so I didn't have to attempt to assuage it with gentle rubbing against the edges of the gas and brake pedals, and my other foot's toenails...

The tip of my right ring finger keeps itching. I use my teeth and bite it a little, the only way to get a really good scratch in.

I have a doctor's appointment this afternoon, and I was going to text my sister-in-law to ask about dropping Grace off early, so I can just put her down for her nap there and not worry about her waking up early enough for us to be on time for the drop-off and appointment after the nap. But then I double checked in my email, and oops! I had the dates mixed up! Today's one of the days she can't watch her! Good thing I checked! Well, there will be enough time for a nap, without the drop-off. Just need to be sure to get a good lunch in her now and get her down for her nap on time.

Off to make quesadillas for us... Scratch scratch. Scratch scratch. The edges of my pants keep lightly touching the tops of my feet and it's awful. Rolls them up. That's a little better. Scratchscratchscratchscratchscratchscratchscratch...

Stole this from someone on the Facebook ICP group page.

Quesadillas with whole wheat tortillas and good cheddar. Honeycrisp apple. Prenatal vitamin. Mmm. I know some have noticed more itching when they eat dairy, but I don't care right now. Besides, I need some calcium.

I'll spare you all the details and the toddler questions asked at lunch. Or spare myself. Whatever. I'm really not telling you everything about the day, I promise. I'll spare you/me the water knocked over, the why did I knock it over... But will tell you she said "Bye bye!" to her covered cup of milk as we put it back in the fridge, 'cause that's pretty precious.

Oh, I haven't made tea yet. Because of needing to get out the door this morning. Starts water boiling for tea. It's important to remember these things. Tea helps fight the constipation from taking iron every day. Mmm.

Oh bother, supposed to keep the prenatals and the tea separated. The tea does not help with the absorption of the iron in the prenatal. Oh well. Getting most of my iron from the separate iron pills, anyway. And the iron in the prenatal wouldn't play well with the dairy, either...

I change Grace's diaper and put her to bed, with little games and routines we've developed along the way. I set a timer for twenty minutes to sit with her and hold her and rock her, but she asks me to leave after ten. I mark down contractions in my app, set a timer to check on her later, that she's actually fallen asleep.

Now what do I want to do while she naps... Just a little to do to get ready for the appointment. I look at the times again. The follow-up with the midwife after the ultrasound isn't until 4:00. If I were wise I'd figure out what we're going to have for dinner now and do some dishes and start on it as much as I can. We already ordered pizza last night. But ergh. We have some leftovers in the fridge, if it comes down to that. Spaghetti is also a possibility.

My FEET. Scratch scratch scratch. Which makes the fact that I'm now thinking about ice cream a little more ridiculous. But ice cream. Just a little.

Still tired, despite the Benadryl last night. One relatively good night of sleep every few days can only do so much. But I'm alert enough. If I try to sleep now, it'll just be harder to sleep tonight.

(Both a nurse and the pharmacist told me that Benadryl, especially when pregnant, is for short-term use, as needed. So I don't take it every night. This close to the end, maybe I could ask if I could, but I also want to be careful not to get so accustomed to it that it stops working. That would be awful.) [ETA, Edited To Add: Definitely asking. Every night and/or some other sleeping aid.]

Some Facebook notifications on my phone, replies, re-reading and posting a link for someone... Oh, I should do those kick counts now, the ones I forgot earlier. And mark down this contraction, and check on Gracie...

Oh hello, Twitter notifications! Yes I will reply to you, too! Ooh, this new person who followed me actually looks really intriguing and this link to a post she wrote, ooh... Reads one post, then another, then another. Goes back and follows person. Chews on tip of ring finger some more while reading.

Oh I've got about twenty more minutes before we need to go. I should decide how much to bring for Grace and get ready. Let's see, as far as questions, this won't be my main doctor, but I think I'll ask her if she knows what the induction process might look like here (last time was not only a different practice, but not scheduled), and whether or not they would give me a cervical ripener at night and then send me home until morning, or keep me for observation, or start in the morning...

Hello, contraction.

Later: Wait, is this a contraction going or coming? Okay, I think coming. Guys, it's hard to keep track when both five-minute-long contractions and back-to-back contractions are things your body does whenever the heck it feels like it. And they don't always hurt, so it's easy to get distracted and not notice when one is over. But I know I should try to keep track, because if I have too many that are too regular I should Do Something about it and possibly even call the doctor. Sigh. (Preterm labor doesn't always hurt! Or so they say. My miscarriage HURT. But. The process would be longer, this late. Don't want my water to break because I'm so not-worried about the not-painful contractions. Oh hey, as it gets closer to my induction date, I suppose I can stop tracking anything that doesn't very much look like imminent labor. Nice.)

Okay we really should be going soon now...

Okay, now THERE'S a contraction I'm almost POSITIVE started before the last one was really finished. >.<

Okay, let's go wake this girl up and change her diaper. Wait, did I put on deoderant this morning? >_> Gracie woke on her own, but is still in the really fussy sleepy stage. Fun.

Okay. Too many "okay"s. But here we go. Hair a mess, no makeup, T-shirt over sports bra... You know. How I normally look right now. Who am I kidding, not that far off from how I normally look all the time. <.<

We step out the door and find a Blue Apron box on the doorstep. Oh, right. Well, no time to put it all away now, yay for refrigerated boxes. Hopefully that will be enough. I shove it inside and we go.

I first tried Blue Apron with a discount from a blogger, after hearing about it from other bloggers for a while. Loved it, but my daughter and husband don't, and it's expensive. My compromise is to keep getting it sometimes, but not every week. Maybe one week a month. And then split the food and cost with my sister, who also lives with us. It... may have been a bit idealistic to expect myself to be up to cooking Blue Apron meals any week this month, as they're rather more work than my usual standbys (or ordering pizza!). But at least they're healthy and delicious (IMHO), which is really nice right now.

I don't mark down contractions now, as I'm trying not to fiddle with my phone much in the car. I do take down a few notes for this post, though... <.<

Realize one pant leg is still rolled up, unroll it.

A little later. I take the wrong freeway exit, distracted. No, I don't want to drive John into the city now, oops. Ow contraction.

Late to the appointment. No, Gracie, let's not park in the parking garage. I know you want to, but this spot is right here, closer, and we need to get in there.

Started reading board book in waiting room to her, then was called in. Quick great ultrasound, passed movement test in just a minute, nice after a couple days where she's seemed just a little slower and sleepier than usual. Out to next waiting room, checked in for the follow-up, then over to the toys in the corner. Kick kick kick kick. No, I'm not kicking, I mean the baby's kicking.

This is not her best shot, but it's the one from today.

Moment later called in again, though the ultrasound was done early and so I'm early for this appointment. Medical assistant, not much waiting, then midwife. I like her. She listened, answered some questions. As planned, I asked a couple questions about the induction process, and though it depends on how it goes (how all these early contractions affect my cervix... or like last time, don't), I was glad to hear they probably wouldn't be sending me home after starting me on the cervical ripener, as some doctors and hospitals sometimes do. Not as a high-risk patient, they'll want to observe me. (I've heard some stories from other ICP ladies where they were sent home, but then, some doctors don't take ICP very seriously, there might be a correlation there.)

She asked Grace if her mom curls her hair or it's that way naturally. Grace keeps playing, not understanding the question. Haha, no, that curly mess is natural, bits of food here and there in a strand and all... :D Uh, yeah, she needs another bath. And her hair brushed again. Oh well. Obviously she looks fine to the casual observer.

Out to car by 4, when the follow-up was originally scheduled to start. Texted John it went well, and he said he was ready to be picked up, so turned a different direction to go to the Transit Center right by the office. Parked, some Facebook on phone, then to Kindle, continuing to read other people's stories of infertility and miscarriage in the pdf proofs of the anthology I contributed to, Not Alone.

Oof. Lots of contractions. Stupid car. I only read for a moment, with answering Grace's questions, before John came to the car. Talked about appointment and such, Grace fussed, I had contractions, so on and so forth. Back home, unpacked Blue Apron box.

I always enjoy unpacking the Blue Apron box, more than I expect to. Fresh food, delivered to my door! All shiny and nomnom! I pull it all out and group it by recipe first, to make sure it's all there.

Since we were talking about leftovers anyway, I decide that John can have leftovers and I'll make a Blue Apron dinner for myself, instead of waiting and making one for lunch tomorrow. At first I think I'll make the calzones, as that was the one I was planning to make first when I saw the menu online -- no special reason, it was just the one they happened to list first. But that watermelon is looking awfully good, mmm, yes, tempting salad. Salad it is.

The salad ingredients stay on the table, I find spots for the rest in the fridge.

I do some dishes to clear the sink, rinsing some and putting them in the dishwasher and rinsing others I'm going to hand wash and setting them aside -- I prefer to do my hand wash in a sink full of soapy water, and it's less gross if there aren't big chunks of food floating around. After the sink is cleared out I take a few minutes to look at the recipe more carefully, pulling out clean utensils and bowls, and setting the dirty ones I'll need in the sink. Though the counter is covered with dirty dishes, only a few of the things I'll need are dirty. I use water on the cool side, despite my mother's admonitions (which she said were not as strict as my grandmother's) -- cool water feels MUCH better than hot water on my itchy hands. We'll live. Again I don't mark down contractions, as it's too much bother with soapy wet hands.

I finish that and start cooking! Though it's a salad, it's not all chopping and mixing, there's a grain to cook (farro, a kind of wheat), and a cheese. (Haloumi, apparently high melting point, so you can sear it in a pan without getting it all over the place.) It's a relatively easy recipe, for Blue Apron, though it still takes me a while. I am not a fast cook. Especially with new-to-me recipes. Looks like the last couple recipes have taken me the prep time they say plus double the lower number in the range given for cook time. Still, it didn't feel like forever. And was relatively simple -- cooking the grain in a pot just a matter of getting it started and letting it sit. Picking mint and basil leaves off stems, slicing a shallot, cutting up a tomato into large wedges. Mixing up the vinaigrette with pre-measured portions, only a bit of olive oil to measure, whisking it up. The cheese to sear real quick in oil, just two minutes on one side and one on the other. Put it all together. Mmm. Not sure what took me so long, except I probably shouldn't keep checking and double checking the recipe so often. You'd think I was working with dangerous chemicals. :-P

The child kept saying she didn't want Papa's food, she wanted to wait for the salad. Sure, kid. We sat down to eat it together. She did have... some. But not a ton. No surprise there. I really liked it, though. Light tasting but filling, sweetness and savoriness in very nice proportions. I wouldn't call the seared haloumi cheese incredible like they did, but it was good. Oh, remember to take Urso. There.

And then I fed Grace some of John's leftover chicken. She didn't eat a lot, but insisted she was full afterward. Well, I'll check again later. Won't be surprised if she says she's hungry after getting in bed, but if she keeps saying she's full until then, well, tough luck, kid.

Feet are still tired when I get up, despite sitting down for dinner for a while. Will lie down for a bit before doing some kitchen cleanup. I won't clean up everything -- did I mention how I have a counter of dirty dishes? But I'll take a Pomodoro, twenty-five minutes, and make some progress. Put the rest of the salad away. I'm tempted to eat it myself, but I'll save it for Melanie. I like splitting the cost of Blue Apron with her, even if I don't like splitting the food. :D

I lie down and write up some more notes from the day, particularly this part about dinner. Mmm, the child is poopy. I ask her if she pooped, she says we should change her diaper "soon." Yes, very soon, small one. I pay a little more attention now to my Braxton Hicks. Three minutes apart, five, seven, nine, two... Around seven in the last hour, if my records can be trusted right now, not sure I was being very careful about them during dinner. Meh. I should probably get up and do dishes soon. Also meh. Tired. That's good, maybe I'll be able to sleep soon. I should try. Not stay up until midnight...

A little more work expanding earlier notes for this, then diaper change, then she plays with Papa. (Earlier she was playing by me, with little cars on the sofa, but not really requiring a lot of attention. I should give her more attention tomorrow...) I should do dishes... Scratch scratch scratch. Oh look at that, the sun went down. Increased itching, right on schedule. Hmm. I think I'll finish expanding these notes, then the dishes. Then bed. Maybe.

Oh dang it, I forgot to start the stopwatch on my phone after I finished dinner. I need to wait two to three hours before taking my iron pill. Used to take it in the morning, but that meant waiting an hour before having breakfast and two hours before any tea or dairy, and it was annoying. [ETA: Okay, it doesn't seem to work great to take it at night, either.] Wellll, maybe I'll have some dessert, anyway... Hrrrm. I should do that soon, if I'm gonna. Don't want to go to bed too late.

Well, that got me back up off my feet, so I'll do some more dishes now. Er, after a bathroom break and more water, that should help with the contractions.

Wait. The stopwatch is running. Has been. Did I forget? Whatever.

Quick detour to help Grace with putting some toys away that have been un-confiscated. Back to dishes. I load the dishwasher and start it, then make some progress on the hand-washing of other dishes. Arguably most important, I get some Tupperware cleaned for the leftover salad. Eyeing it, I see there's definitely more than a meal's worth there. Maybe I'll eat a bit more tomorrow. Chef's tax.

Bedtime meltdown while I wash. John gets her ready for bed, and then... I'm done. And my feet are Very Done. Into her bedroom, set a timer, hold her on the floor, rock her in the rocking chair, put her back in bed and sit back in the chair... Some texting and Facebook notifications on phone. Timer goes off, she asks me to stay a little longer, and I agree, making things harder for future me (and John!), when she will again not understand that a timer going off means now, not "soon." But she falls asleep in a minute or two, I sneak out. Finish up on Facebook, take some more notes... Hmm. It has not been two hours yet. I wanna go to bed. But iron. Waaah.

It's been a good day, a full day. (You know, with all the sleeping in. And appointment. <.< And cooking! Don't forget there was also cooking!) Not a typical day, per se (I didn't even go on Habitica at all! I'm checked into the Inn, but still!), but not particularly weird or unusual, either. And whether it's been the focus on note taking or not, I haven't felt as much of the depression and urge to numb out online as I often feel after my doctor's appointments, either. [ETA: Okay, but the next day, though.] (They've been good appointments, but they still seem to stress me out a bit. They remind me of previous not-so-good appointments. Still have more emotions to process from my first pregnancy.) Though a little, and feeling too brain dead to do some of my normalish evening routine stuff. Mmm, getting that Blue Apron box might have helped a bit, too. With the better evening, I mean. Not with making me brain dead.

Okay, I'm gonna lie here and listen to the lecture thingy John is listening to... It is 10:00, now. Tired.


That and a bit of Twitter again. Ooh, Baby is doing those big kicks and movements that make it look like you have an alien in your belly. Very nice. Okay. Sufficient time has passed. Good night everybody. Time to charge the things and turn off the lights and get in bed. Wait, no! Time to take iron, that was the whole point. And then reset the stopwatch, weirdest instruction with this prescription is to not lie down for at least ten minutes after taking it.

I shall look over this monster of a blog post again, see how it's flowing and sounding, make sure I'm keeping my verb tenses semi-consistent... Meh, it'll do. I kinda like the switching back and forth from past to present, actually. Sorta shows where/when I was paying more attention and writing more in the present? Hopefully you didn't find it too distracting.

Oh and hey, I forgot to ask Grace again if she was hungry before bed, but she actually never mentioned it again either, yaaaay.

Writes a note to self: "[Check if I took any pictures today that weren't of food.]"

Heh, and now it's been over half an hour since I took the iron. Methinks I can go to bed.

(And then I checked an Instagram notification and then I went back and looked at some of my own pics of Mah Baaaybeee and now it's almost midnight, gaaah.)


And then I tossed and turned and scratched and scratched for about an hour, with nothing but my thoughts to distract me. #CherishThis

Well, and contractions and kicks.

I get bored and annoyed. More phone.

Later: Okay, think it's time to try again. More tired now.

So I try again. And scratch and scratch. This is when I get discouraged. It's two in the morning now. It's typically when I start thinking things like, "I can't do this," over and over. I don't exactly mean that (2-a.m.-me has no plans for how to NOT do this), but Cholestasis (in my experience) is ups and downs, and if it were always this low I'd probably try to check myself in to a mental hospital. Especially if they had lots of pregnancy-safe sedatives they were willing to give me.

A little after 2:30 I think I finally fall asleep. It's around 2:30 when I feel the sleepiness growing more overwhelming, but still there are a few more overwhelming itches before the sleep can take over.

About 3:40-4:40 is off and on and hazy. I think that I'm awake, and have more to say about what happened during that time, except that I seem to have dreamed those things. I was awake enough to check the time, but asleep enough that what I remember I was going to say now doesn't quite make sense, and the missing pieces that I swear would make sense of it are forgotten, just slightly out of reach. Very dream logic. Something about sleep and preterm labor and contractions, and you can't until you can (are allowed to sleep or have contractions or something), and then you can't. But that's not quite it either. And there were events I dreamed I can't quite put my finger on. And there was something about salad, and recipe instructions? And it was me and a friend or another Facebook ICP mom...?

After 4:40 I go to the bathroom, to help with the contractions that seem to be waking me up (a full bladder means more contractions), but then I'm really awake. I lie there and scratch, even my lower lip seems to be itchy now. Or something. It feels funny. And I try to remember and make sense of what I forgot. Meh.

5:40, I give up and get up. I'm not declaring it a new day yet, just letting myself do other things while I get sleepier again. I write some of this down.

Don't worry, this is one of the worse nights for sleep thus far, atypical. [ETA: Arrgh, umm, well okay.] Though none of the individual elements are particularly unusual. Except maybe the dream. That was different.

Crap, the movement I thought I saw out of the corner of my eye wasn't my imagination or a trick of the light, it was a ginormous spider running across the floor at the edge of the room. Wonderful. Despite its size, it's spindly and brown and hard to see in the low light. But with the legs, the circumference of the thing! As wide across as my palm, perhaps? I think so. I have small hands, but still. And maybe somewhat spindly, but still far thicker and more substantial than a daddy long-legs. As I get a closer look I'm tempted to just throw something heavy at it. It's in an awkward corner, without much room to squish it. I stand back as far as I can and screw up the courage to whack it with a shoe.

Great, I only got a leg, and it scuttled farther into the corner and behind TV speakers, out of sight and reach. Stupid carpet, this is your fault. Yuck and bleh.

Oregon, I love you, but your spiders are Too Many.

I will not freak out, I will not. It's probably going to hide for a bit, not climb up on the couch with me. Probably. Moves blankets that are hanging off the couch, touching the floor.

Freezing weather for spider deaths cannot get here fast enough.

The sun has come up, the light slowly grows.

I eat a little and return to my Kindle and the Not Alone proofs. These beautiful, heartbreaking stories. On a shallow level, amazed by the writing skill of some of the authors, I think of more things I wish I'd said in mine. Too late for that now. I'm honored to be included, and I said what I could at the time. Yes, there was a little more to my story that hadn't happened yet, and a few more reflections, but at least the not-finished aspect gave it more immediacy. I can blog more about it, but in this book form, it's finished and done. It's in God's hands now. All of these stories are.

And I'm grateful that some of them say some of the things I wish I did, if from slightly different angles. It's important that they're said, it doesn't have to be me who says them. The only thing missing, from my perspective, is any explicit mention, by name, of postpartum depression after miscarriage. Well.

Brief dizzy spell, and look, it's 7:00. I should try to get some more sleep, if I'm going to.

The last essay is so perfect. I'm sorry for the author's loss, but given her loss, I'm glad this was written and chosen and placed here.

I go to bed.

These beautiful, heartbreaking stories. I want to hug everyone in the world. Especially every mother, but also every father, everyone yearning for a child, even everyone not. Those struggling with other things and those who are like, Why are you hugging me, you crazy lady?!

I'm so grateful for this little one, for all that she's so hard.

And for my outside-the-womb child, now insisting I get up. Had a few more minutes of sleep. And then maybe an hour or so.

It's a new day.

A new day with a nap in its future. And quite possibly Benadryl, come nighttime.

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