next_to_normal: (Cordy grin)
Thank you for the well wishes on my last post - I meant to get around to answering them, but then I was in the hospital for THREE EFFING WEEKS, and by that time, it was like, old news, but I appreciated your thoughts. 

I had my surgery four days after I posted, and then spent the next two weeks developing every complication ever. No, really. I had surgery on a Tuesday, and was supposed to be released by that Friday. I actually did really well at first; I pretty much bounced out of bed on Wednesday and was walking around and everyone was impressed. (It was mainly laparoscopic surgery with one larger incision to take out the bad intestines, so I mostly just had small holes all over my abdomen and the pain was nothing compared to what I'd be dealing with before.) Well, on Thursday I start feeling lightheaded, and by Friday I am straight-up passing out in the bathroom. Turns out my blood pressure was a little high, and they way overcompensated with blood pressure medicine, so my bp then plummeted to like 67/40, hence: unconscious.  

So I had to stay in the hospital another few days so they could watch me, but in the meantime, my blood tests come back that I am anemic and showing signs of infection, so I go for a CT scan to discover that I have fluid in my pelvis that needs to be drained. Free fluid just kinda floating around in there. So they poked another hole in me and I had a drain for a few days. The fluid they drained tested positive for E. coli, so then I ended up on lots of antibiotics. But even after the drain had drained everything, my white blood cell count was still high, so I went for another CT scan, where they took out the first drain and put in a second drain to drain more fluid in a different place. Counting my PICC line (which is like a permanent IV line in my upper arm, so they could take blood and feed me through the tube and give me medicine all in the same port, it's pretty awesome, highly recommended), I ended up with a grand total of 7 holes in me. 

Also, throughout this time, they kept switching between letting me eat real food (the surgeon wanted me on solids ASAP, to make sure my bowels still worked properly) and putting me on feeding tube only or liquid diet because of all the drain insertions and CT scans and stuff, so I only ate solid food maybe four days out of the three weeks I was there. The hospital I stayed at was super nice; I was in a brand-new building just opened in the fall and had a private room with a fold-out sofa bed for guests and a bigger flat-screen TV than I have at home and a bathroom you'd see on HGTV. So we kept joking that it was like staying at an all-inclusive hotel, except the meals are terrible, lol. (The few times I got real food, it was actually pretty good. I just spent most of my days drinking Ensure and eating jello, when I was allowed anything at all.) My mom insisted that my bag o' tube food looked like a pina colada, but the nurses refused to add rum. 

FINALLY, two weeks after my surgery, and nearly three weeks since I'd first gone to the ER, they took out the second drain and let me go home, but because my bloodwork was still wonky, I had to give myself IV antibiotics for three weeks after. They gave me my own IV pole and everything. Since I also know how to give myself shots, I am now basically qualified in nursing care. 

Once they took the PICC line out (after the three weeks of home antibiotics) I was allowed to come back to work, where the plague has descended, so I have a horrendous cold. And possibly allergies. It's hard to tell. I also had my period for three weeks because my body was so out of whack after surgery. (No wonder I'm still anemic.) 

But THE PAIN IS GONE HALLELUJAH. I still have Crohn's and I still have diarrhea (have not had solid poop since surgery, shortened intestine means I may never have solid poop again, wheee), but it is a thousand times better than being in constant pain. It was actually pretty hilarious that BEFORE the surgery, they were giving me morphine and dilaudid, and after the surgery, I just took tramadol and tylenol. Surgical pain is nothing compared to scar tissue hardened to concrete in your internal organs. \o/

So, other than possibly hacking up a lung, I am doing well and hopefully will not need more surgery for a while (like, years).
next_to_normal: (Default)
Wheee, I am writing to you from THE HOSPITAL, which is where they send you when your internal organs misbehave as mine do. Short version: abdominal pain, vomiting, ER. I now have IV fluids and a feeding tube, surgery happening as soon as I am no longer malnourished.

Slightly longer version: I went for an MRI (in which I was required to drink contrast fluid and proceeded to vomit said contrast ALL OVER THE DAMN PLACE, advice for good living: do not vomit in an MRI tube) which showed a 20cm stricture that basically is blocking food from getting through. I thought I could stick it out a few more weeks and was planning to have surgery probably early May. But then I started vomiting and couldn't stop, and went to the ER, and here we are. 

I yet live

Mar. 9th, 2017 11:37 pm
next_to_normal: (Spike/Dawn sigh)
I know people tend to post updates "so you know I'm still alive lol" and don't really mean it seriously, but in my case, I feel like the concern might actually be warranted?

To wit: I have vomited ELEVEN TIMES since the last time I posted. 

I joked on Twitter that my digestive system decided not to go to work on International Women's Day, so I wasn't going to, either. But really, I would prefer if we were both working, so get your shit together, you stupid colon.

I dropped out of the clinical trial, and thus upon exit racked up my ninth colonoscopy, the verdict of which was that some parts of my colon looked a little better, but the terminal ileum is still too swollen to get a scope through - which, incidentally, means it's also hard to get FOOD through, hence all the vomiting.

I started the latest new drug, Stelara, which is supposed to mumbledy mumbledy something and make me better. Who knows how it works. Or if it works. A lot of those vomits were this week (AFTER I started the Stelara). But it could take 8-12 weeks before I see any improvement, so. If this one doesn't work, it is probably surgery time, about which I have mixed feelings.

I am going home this weekend to pet-sit the Bad Cat (and the eleventy other cats) while my parents are on vacation. Chelsea is not coming, alas, so that ship remains on hold, but I trust they will become the Buffy/Spike of the feline world, they're just still in season 2. 

Sidebar: HOW IS BUFFY 20 YEARS OLD? I FEEL SO OLD NOW, AND I ONLY DISCOVERED THE SHOW IN 2006.

Things I cooked that I did not later throw up:

Scallops Provencal - I only used half a pound of scallops, but didn't halve the sauce, because then I poured it over angel hair pasta and it was delicious. All of my scallop recipes are basically the same, but whatevs. I like scallops. I like pasta. I like garlicky, shalloty white wine sauces. WHERE IS THE WRONG?

Lemony Asparagus Risotto - So, when I was in the grocery store, I was like, "I need 5 cups of chicken broth. Should I buy one container that's 6 cups, or two containers of 4 cups?" Turned out they were the same price, so I went with two containers of 4. Good thing, because this recipe actually required EIGHT cups of broth before the rice was really cooked and softened enough. Other than that, it was pretty good, which is handy, since I have a lot of leftovers and am now pretty much exclusively eating rice and toast. (See above re: vomit.)

Pics )
next_to_normal: (Christmas Chelsea)
Sorry I've been MIA for, like, forever. Lots of unpleasant health stuff. I... don't really want to get into it. There was a lot of vomit. Occasionally, projectile vomit at the Kennedy Center. 2017 is off to a banging start.

Welcome, LJ refugees. Sorry Russia is fucking with you. You know, more than they're fucking with the rest of us.

I have been cheating on DW a bit by posting on Facebook again. Mostly because I now have a bunch of Crohn's buddies on there, and I feel better about dumping my shit (literal and figurative) on those who identify? Also I post ridiculous pictures of my cat. Here, you can have those.

Read more... )

Oh, hey, I also has recipes from aaaages ago I never posted.

Pumpkin Nutella Swirl Muffins

Salted Pretzel-Marshmallow Bars


I took pictures of those, too:



Desserty things taste good. (In the spirit of "this is my life now," I made them for a party I was supposed to go to, only to end up barfing and missing the party, so my coworkers ended up getting the goodies.)

How you?

next_to_normal: Three-paneled close-up of Buffy in The Gift; text: Big Damn Hero (big damn hero)
Hi, y'all.

Sorry.

Where'd we leave off? Chicken pox, I believe. LOL so much epic shit has gone down since then

(I GOT SOMEONE FIRED)
(I HAD SURGERY)
(I WENT TO ITALY)

so let's just start with the catching up.

HOW I GOT SOMEONE FIRED )

HOW I HAD SURGERY )

HOW I WENT TO ITALY )

So that's what I've been up to, tl;dr.

The most recent health news - after Italy, I was doing really well for about a week, and then suddenly for no reason at all had a fever and chills and worse than usual pain - which had nothing to do with my surgery, but also we could find no outside cause other than "haha you have Crohn's," even though the study drug seemed to be working pretty well? But I had to go get a CT scan, which showed the inflammation was really, really bad and for like a minute, my doctor was talking about more surgery - intestinal, this time - but then the fever and stuff just kind of went away. So I am currently on antibiotics that make me want to puke, and anti-nausea medicine so I don't puke, but otherwise seem to be sort of okay and am approaching the end of the 12-week trial, at which point I will have my EIGHTH FUCKING COLONOSCOPY, and then who knows? I can stay on the study drug if I want to, if it's working, since they miraculously haven't kicked me out of the trial yet, despite having a gazillion complications and breaking all their rules, lol.

So. That's me. How've you been?
next_to_normal: (Cordy WTF)
So that was the mildest case of chicken pox, possibly ever in the history of recorded medicine! I know I have a high tolerance for pain and illness, given the symptoms I deal with every day, but you guys, I barely even itched

I mean, I was expecting it to be pretty mild, given that I got the chicken pox FROM THE VACCINE so it was just a teeny, tiny dose. But I probably also have to give some credit to my unbelievably aggressive immune system, which I tend to forget can actually be useful since it spends most of its time viciously attacking my internal organs. But give it an actual disease to fight off - even while being handicapped by steroids - and it does a BANG-UP JOB, I TELL YOU. 

In fact, Crohn's-wise, last week was the best I've felt in AGES, presumably because my immune system was too preoccupied with battling the chicken pox to bother with its usual routine of acting like it's Donald Trump and my colon's full of Muslims. I should've injected myself with an infectious disease ages ago! Granted, it would've been a lot nicer if my feeling better hadn't had to coincide with my being literally QUARANTINED and unable to leave my apartment because I was contagious, but beggars cannot be choosers.

Though, let me tell you, if I had the choice between chicken pox and Crohn's? I WOULD ABSOLUTELY RATHER HAVE THE CHICKEN POX.

No, seriously, can I have them again? Please? As of yesterday, of course, my spots have mostly faded, I am no longer contagious, and I feel like crap again. I am contemplating going back to the vaccination place and seeing if I can get a yellow fever shot next, but somehow I don't think I would be that lucky twice.

It has occurred to me that, despite having been on immunosuppressants of various kinds pretty much constantly for the last seven years, I have never, in all that time, been sick with more than a mild cold (other than the obvious chronic illness, that is). That is... not normal. No wonder my poor colon is taking such a beating. My immune system is basically indestructible and Hulk-smashing every germ in its path. And that's not even enough to keep it busy! And I kid about the yellow fever (mostly), but maybe exposing myself to more germs is actually the key to keeping this monster at bay? At the very least, I'm thinking twice about next year's flu shot.
next_to_normal: (facepalm)
I swear to God, I am laughing hysterically at this, because if I don't, I will throw myself out a window.

So, in a previous post, I made brief reference to a chicken pox vaccine. Here's the full story: one of the requirements for the clinical trial I was trying to get into was verification of chicken pox antibodies in my blood. I don't know why, I guess just because of the risk of catching random diseases with a suppressed immune system? Anyway, I never had the chicken pox as a child, so when the vaccine first came out around age 11, I got it. 

Or thought I did. Apparently, it didn't take, because the blood test came back negative for the antibodies, meaning I had to get the vaccine again, and - way more annoyingly - repeat all the screening tests (including the colonoscopy) I had just done to qualify for the clinical trial. This was exactly 3 weeks ago, to the day.

NOW I HAVE THE FUCKING CHICKEN POX.

Yep. I got chicken pox FROM THE VACCINE. Because there wasn't already ENOUGH wrong with me, let's add CHICKEN POX to the mix. 

I'm actually not even surprised. Because of the Crohn's, I'm on steroids, which can somehow both make the vaccine less effective AND increase your risk of actually getting the disease from the vaccine, which they warned me about when I got the shot. But it's not like I really had a choice - I couldn't stop taking the steroids, or my Crohn's symptoms (which were already awful) would have gotten even worse. I couldn't wait until I was ~better, because my only hope of getting better is getting into this trial, which requires the vaccine. So I went ahead and got the first of two shots, and was supposed to go back for the second shot next week. I guess we can cancel THAT appointment. 

On Sunday night, I noticed a couple weird red spots, one of which happened to be on my arm, pretty near the spot where I got the shot. Then yesterday, there were more spots, so this morning I emailed my gastroenterologist to be like, "Uh, I think I might have the chicken pox?" He told me to come in, and then sent me to a dermatologist, who confirmed that it was, indeed, chicken pox. It's apparently (hopefully) a mild case, considering I got it from the vaccine, but still.

So I basically gave myself chicken pox. Not only that, I PAID SOMEONE MONEY to give me chicken pox, because my insurance didn't cover the shot. (I'm supposed to get reimbursed by the study, but it's the principle of the thing more than the actual money.)

OF COURSE I HAVE CHICKEN POX. OF COURSE. 

WHAT IS MY FUCKING LIFE. 

Oof...

Mar. 12th, 2016 03:37 pm
next_to_normal: (Annie scream)
Note to self: Next time, wait for the painkillers to kick in BEFORE clicking "post," maybe it will keep you from being quite so maudlin.

Everything is not ALL bad. My parents and I booked a trip to Italy for the end of June. My mother is significantly concerned about my health and particularly stamina re: sightseeing, but there is a FREE APARTMENT IN FLORENCE in the offing, so it was sort of a now-or-never proposition. I mostly just want to be okay enough to eat real food, because ITALY, but fortunately pasta is one of the six things I can actually eat? Albeit plain noodles without any sauce, but still, handmade-from-scratch plain pasta in Italy is probably better than just about anything I'd eat here.

I am sort of going stir-crazy because this most recent bout of pain and vomiting led to me working from home much of last week and all this week, so I have barely left the house. The one exception being Thursday, when I went to the ~theater to see Road Show, because I bought the tickets back in August and we already postponed once because of vomit and it's Sondheim - new(ish) Sondheim at that, so fuck it. I showered and put on a pretty dress that I haven't worn in, like, five years (because if everything is going to be terrible then at the goddamn fucking least I am going to reap the benefits of having lost 60 pounds, you know?). And by, like, an hour in, I was in significant discomfort, but fortunately it was one of those speedy, no-intermission shows. \o/ I just hope it didn't reflect on my face because I was in the FRONT ROW OMG so those poor actors were probably like, "Are we that bad? This woman looks like we are inflicting SUCH PAIN." Sorry, actors, you were very good! 

So, this is basically what we're doing now, taking lots of drugs and hoping for the best. Which, you'll recall, is how I ended up going to see Hamilton in a Zofran-induced haze (because you know it is impossible to get tickets and I WAS NOT THROWING AWAY MY SHOT), or taking that trip to Nashville on a shit-ton of steroids, or the most recent Percocet-fueled weekend I worked through for a conference. (Though, to be fair, I'm not entirely sure I survived that last one, since I did start throwing up immediately after. Granted, it could've also been a reaction to the chicken pox vaccine, that's still up in the air. Or it could be from going off the Prednisone.)

(My LIFE. There are just SO MANY REASONS for me to puke, we can't even narrow it down.)
next_to_normal: (Buffy sigh)
I stole that phrase from [personal profile] cleolinda because it's pretty darn accurate. Basically, I am alive, barely, and conserving energy for things like remaining in an upright position during work hours and not puking in inappropriate places.

Trying to get into a new clinical trial, but being delayed by some bullshit about a chicken pox vaccine, which I have now had to get twice. To be followed by my SEVENTH colonoscopy in as many years - no, you didn't miss one, I just skipped over talking about number six, because I'd barely finished it before they were telling me I needed another one. So, you know, fuck everything, basically.

Pretty much at the end of my emotional rope, honestly. Prone to randomly bursting into tears at the unfairness of life. Wishing my cat would stop jumping on my stomach because it really kind of hurts but she doesn't get it when I try to explain. Reduced to trying to explain painkiller woes to a cat.  

Turning 32 on Tuesday. What the fuck.

next_to_normal: Cordy praying, Willow watching; text: ask for some aspirin (Ask for some aspirin)
Hi y'all. Still alive over here. Sometimes I feel like maybe it's time to close the figurative doors on this place, since all I seem to do is use it to reassure people that I remain among the living, and to detail my body's ongoing efforts to the contrary. Mostly, I wish I had more to SAY, but I just don't have the energy to, like, think about things, lol. Which sounds lame and stupid, because it seems like dealing with physical pain shouldn't impact my ability to review television shows or make icons or whatever else I used to do, but... it does. 

I'm still doing about the same - lots of pain, lots of Percocet, no progress on the Entyvio. I'm starting another new clinical trial, but have to taper off the Prednisone first (which I am happy to do, goodbye hairy moon-face!) so it'll be about a month before I get the new drug. At least it's open label, so I know for sure I'm getting real medicine and not placebo.

Anyway. It also seems ridiculous to post holiday pictures now that it's MID-JANUARY, but whatever, here's Chelsea wearing a fancy bow for Christmas:

Read more... )
I meant to do the end of the year meme, if only to help myself keep track of all the TV I watched, but... meh. I also contemplated doing the hair meme that was going around, but then I remembered I'm allergic to selfies and so I don't actually have any good photos of my hair to post. Not that my hair is really interesting enough for a meme, anyway.

Uh, bad news for some of you: I FINALLY got around to watching Mad Max: Fury Road, and I found it pretty meh? Like, it was fine as an action movie, but I don't get all the wild love for it? I can see why the prominence of female characters in this kind of movie would make a lot of people excited, but, like, is that it? It seemed like there was a ton of backstory that was just... not explained (like why any of this was happening, lol) and it kind of surprised me that people who, on the whole, tend to place a high priority on STORY loved it so much when it's basically 2 hours of non-stop action with the barest minimum of plot to justify it. Maybe it's just not my genre, or I had too high expectations because it seemed like the entire internet flipped their shit over it. (I will say this: flaming guitar guy was as hilariously weird and fantastic as I'd been led to believe.) So, tell me what I'm missing, Internet!

I watched MM:FR as part of my Oscar movie challenge - my friends and I are attempting to see all the Best Picture nominees. So far, I've seen 3, the other two being Spotlight and The Martian. I LOOOOVED The Martian. It probably shouldn't have been in the Comedy category for the Golden Globes, but it WAS pretty hilarious, and Matt Damon is fantastic. We as a society really ought to stop leaving him in dangerous places, though. It's costing an awful lot in money, effort, and lives to keep retrieving him.
next_to_normal: (Christmas Chelsea)
And all Chelsea wants is her two front teeth back. We make quite a pair.

No, actually, Chelsea is doing just fine. Her stitches have healed up, she's eating regular food again, and as far as we can tell, she remains flea- and tapeworm-free. \o/ I, on the other hand, am having worse pain and diarrhea, so we're back to having the dietary diversity of a five-year-old (grilled cheese, goldfish crackers, and plain buttered noodles). Went to the doctor yesterday, and he added another steroid to my daily regimen, so we'll see if that helps. Needless to say, the Entyvio still has not kicked in, and, like, I want to give it time to do its thing (because if we ditch this one, I don't have many other options to try), but I also don't want to be in pain for another three months. 

Before I stopped eating real food again, I did try out one new recipe. I wanted to use up that goat cheese (I clearly bought too much goat cheese), and I found this Pecan and Goat Cheese Pasta, which appealed because goat cheese, pecans, and dried cranberries are a combo I really like in salads, but would never have thought to put in pasta. 

You know how experienced cooks are always like, "I just made up this recipe by throwing together whatever I had in the fridge"? I cannot do that. Whenever I have an ingredient or two I want to use up, I have to google what I have and try to find a recipe that uses it AND ALSO does not require me to buy more things. I don't know how to get good at the "throw in whatever's lying around" style of cooking, except to practice and watch a lot of Chopped, I guess? Anyway, I did get slightly adventurous and add sauteed shallots and garlic to the recipe, since I HAD THEM LYING AROUND, lol, and while it all tasted good, the goat cheese never really melted into a sauce the way I hoped, so it was a little dry.

I am totally done with my Christmas shopping - I actually finished early (for me) this year, i.e. a whole week before Christmas. \o/ Usually I am last-minute ordering stuff online and then freaking out because it has not arrived by the time I have to leave to drive to New Jersey. Which... has happened again this year, but ironically the one thing that hasn't been delivered yet is the VERY FIRST GIFT I BOUGHT way back on December 8th! It's not like they're shipping it from India or something, either, just Fredericksburg. I'm starting to think it got lost in the mail. (And yes, I emailed them, and they were like, "USPS says 1-2 weeks is the average this time of year..." They offered to resend if I don't get it by today, but that does not help with getting it in time for Christmas.) Even the last-minute gift for my dad that I bought off eBay on Saturday that wasn't supposed to be delivered until the 26th managed to get here early, but not the one that had two leisurely weeks to make it to me from 5 miles away.

ANYWHO. Here are photos of my Christmas tree and Chelsea helping/eating the decorations:

Read more... )
I opted not to torture Chelsea this year by making her wear her Christmas outfit. YET - there is still time, but really, the poor thing has been through a lot lately.

Merry Christmas and Happy New Year and all the other holidays to you all. Chelsea and I are off to the 'rents tomorrow, for a whole week, which I am hoping will give me a chance to rest up and feel less terrible in 2016! 
next_to_normal: (VM exasperated)
1. I have decided to get myself a TV streaming stick, either a Roku or Amazon Fire. I am leaning toward Roku based on internet comparisons, but I do have Amazon Prime and a Kindle Fire, so I'm open to being persuaded in that direction. (Also, I have a suspicion that as soon as I buy a Roku, they will announce that they're coming out with a newer model, whereas Amazon already did.) Anyone have a recommendation or preference? (Obviously the best time to purchase such a thing is AFTER I spent the weekend binge-watching not one, but TWO TV series - Jessica Jones and The Man in the High Castle - on my laptop. Both shows are highly recommended, FYI.)

2. I really want to email this to my mother and be like, "Do you think maybe we could try this for a change?" I might possibly be cranky after a phone call this weekend in which I mentioned having a lot of pain this week, and her response being, 'Well, you have been doing a lot of cooking lately and eating more than usual." Like, SORRY MY BAD for trying to eat relatively balanced meals and maintain a healthy weight. Maybe I should go back to eating nothing but grilled cheese. I get that she just wants to be able to make me better and critiquing everything I ingest is her trying to ~solve my Crohn's but CROHN'S DOESN'T WORK THAT WAY and just once I would like to say, "Hey, I'm in a lot of pain," and hear, "I'm sorry, honey, that sucks," instead of, essentially, "Well, that's what you get for eating FOOD." 

3. Speaking of food, I made butternut squash soup this weekend. I'm not even going to bother linking the recipe because the proportions were way off and I ended up having to add more than twice as much chicken stock as the recipe called for in order to get the right consistency, so I'll be looking for a different recipe the next time I make it. My parents have one, but it makes about eight gallons of soup, so I figured I'd just look for a smaller batch recipe online, but this one was not a winner. Tasted fine, though, once I made it not mashed potatoes-esque. 
next_to_normal: Spike and Dawn looking thoughtful; text: are you pondering what i'm pondering? (Spike/Dawn pondering)
Is anyone else watching The Affair? The plot is... pretty self-explanatory. It's about two people who are married, not to each other, and having an affair. The initial hook was that each episode was divided into two parts, telling the story from each main character's POV, sometimes repeating the same events but with contradictions or inconsistencies that suggested intriguing things about memory and unreliable narrators. Except by the end of the season, the versions were sometimes SO different that you couldn't tell what actually happened, like, from a basic plot perspective, which ended up just being distracting.

So I wasn't even sure I was going to watch season 2, but then I did, and weirdly found myself most concerned with a totally minor thread in which the main character's teenage son is having stomach aches - like, up until this week's episode, it is not even mentioned often enough to be a legitimate subplot, it literally is just a vague thing happening in the background of the story. To the point that I was seriously questioning myself, like, is the show that boring or am I just that obsessed with digestive problems that I will latch onto any character experiencing them, no matter how minor?

AND THEN THE KID GOES TO THE HOSPITAL WITH A PERFORATED BOWEL AND IT TURNS OUT HE HAS CROHN'S DISEASE AND I'M LIKE, "LOL OMG MY INSTINCTS ARE FLAWLESS."

But then that got me thinking that this is probably the first TV character I have ever seen with Crohn's disease, and in general how rarely we see ANY kind of chronic illness on television that isn't cancer. I mean. other than President Bartlet's MS on The West Wing and Michael J. Fox on The Good Wife (and his short-lived sitcom, where his character also had Parkinson's), can you name any? I sincerely doubt this "kid with Crohn's" plotline is going to become a huge part of The Affair - if it comes up again at all, it'll undoubtedly be only in the context of how his parents handle it, since they're the show's main characters.

Maybe that's because living with chronic illness doesn't fit neatly into a plotline. I mean, cancer has a well-defined arc - it's a character-strengthening battle you either win (yay happy ending!) or lose (tragic death). But most chronic illnesses just go on and on and maybe there are ups and downs, but there's no END (granted, some illnesses are irreversibly degenerative, but it's usually a long-term thing that won't kill you nearly quick enough to be dramatically relevant). The best you can hope for is managing your symptoms, and in general you just live with it every day and it sucks and probably is kind of boring and nothing anyone would want to watch for entertainment. 
next_to_normal: (Miss Kitty Fantastico)
So I have not updated in forever. I blame it on the drugs. I am still on Percocet, my mother is worried I will become an addict, but my doctor said, "If it hurts, take as much as you need," so I am all, "YES THANKS TAKING ALL THE DRUGS" because I still have a lot of pain for some reason? Like, the nausea is (mostly) gone, way less diarrhea, and I am basically eating food like a normal human again. (It doesn't seem to matter what I eat, so I figure I might as well eat normally if it's going to hurt like hell anyway.) So, I mean, other than the DAILY BOUTS OF EXCRUCIATING PAIN, I'm kind of feeling better? I guess?

Poop and travel and weight loss and cat teeth )
next_to_normal: (Miss Kitty Fantastico)
Before we get into the latest health debacle, here is a public service announcement: NPR is streaming the cast album of the new musical Hamilton for free before it's available to buy (Friday on iTunes). And you should totally go listen to it, because it's Lin-Manuel Miranda and Alexander Hamilton and hip-hop founding fathers, which totally should not work, but it's fantastic and frankly would have been worth puking my way through New York to go see it a few weeks ago (though fortunately I did not have to, because it was during my 10-day non-puking window, more on that later). 

Hamilton is the most talked-about musical of the year, and it's totally going to win all the Tonys, and it's sold out for months, so back in July when my theater buddy Christi suggested we get literally the last two available tickets for Labor Day weekend, I figured hey, why not? Maybe I'll be better by then. Which was foolishly optimistic, but again, no puking so it all worked out, I guess, and I'm really glad I got to see it.

So go listen and be jealous that I've seen it.

And now the health )
next_to_normal: (Cordy WTF)
Rather than do another whole "yes I'm still basically dying" update, I will just let you assume that everything is still terrible (it is) and instead copy and paste the following g-chat exchange between myself and [personal profile] per_aspera_ad_astra :

Kelly: here, watch whine about it
i'm sure you have a co-worker or two like this

Me:
god the bathroom thing
which is exponentially worse in my condition

Kelly: i can't even imagine
his rant about reply all was pretty emotional, haha

Me: the worst is when you run into them right outside the door
and you can't like, suddenly change direction like you were going to go somewhere else
so you HAVE to go in with them
and then they start talking to you
and keep talking when you go in the stall
and it's already going to be blatantly obvious that you're taking a lot longer than them because you are clearly sitting there waiting for them to leave so that you can poop
but then it's like, they don't want to leave without you b/c you're ~having a conversation
and it's like JUST GTFO
I AM GOING TO BE AWHILE
YOU DON'T WANT TO LISTEN
meanwhile my ass is turning purple from the strain of ~holding it in

Kelly: you have really stupid co-workers

Me: yeah
I mean, I don't mind exchanging a "hey how are you" if you're just there to pee and you run into each other at the sink
but for god's sake, you know I have a digestive condition, go away so I can poop
maybe people don't realize that I am ALWAYS there to poop?
I am never not pooping
actually, i take that back
sometimes I'm there to vomit
in which case, I DEFINITELY DO NOT WANT TO CHAT
once, a coworker stopped me on the way into the bathroom to chat and in the middle of the conversation I literally gagged and clapped my hand over my mouth and ran inside

Kelly: omg
yes, your coworkers have got to learn better bathroom etiquette

Me: to be fair, the same coworker was nice enough to offer to drive me home afterward so I didn't puke on the metro
still
don't be stopping a girl on her way to puke or you might get puked ON
next_to_normal: Spike and Dawn looking thoughtful; text: are you pondering what i'm pondering? (Spike/Dawn pondering)
1. Is it problematic that my diet now consists almost exclusively of grilled cheese? I do occasionally eat other things (eggs, for example, which seems to be the only food left I have not at some point vomited back up), but I had TWO - count 'em - TWO grilled cheeses today. Not for lack of trying - I made an attempt at broth at lunchtime and chicken for dinner, but couldn't manage more than a few bites of either.

Something about that combination of buttered bread and cheese - which they tell you not to eat when you have an upset stomach! No dairy is one of the main things they tell you! But this is not your normal nausea, apparently - manages to satisfy my stomach's desire for solid food, because the nausea kicks into overdrive on an empty stomach, while also not being substantive enough to cause too much abdominal pain as I digest, while ALSO apparently being bland enough not to upset the delicate balance in there but not SO bland that the mere thought of choking it down makes me want to hurl (like the chicken, pasta, rice, crackers, toast, and every other goddamned starch on the planet). 

2. Why don't they just sell ginger ale already flat? I'm sure there are a few people out there who actually like drinking it (my mother is one of them), but it's also sort of universally accepted as "the thing you drink when you have an upset stomach" but for that it's supposed to be FLAT, so why not just sell a non-carbonated version? It'd probably be a big seller! Because it is a pain in the ass to have to sit there and stir out the damn bubbles. When I want my ginger ale, I want it NOW. I've actually taken to pouring out glasses and just letting it sit, so that by the time I'm ready to drink one, it's already flat. 

3. Is sympathy puking a thing in cats? Chelsea chokes up the occasional hairball just like anyone else, but she's vomited twice during the last couple weeks I've been sick. I know that seeing (or worse, SMELLING) someone throwing up can cause an upchuck reflex in people, but CATS?

(Actually, I think I know the answer to this one. I think it's just that she eats too fast. Because occasionally I'd forget to feed her so she'd be really hungry? And by "forget" I mean "lay down to take a nap, totally meaning to get up again before I go to bed, but I was on that crazy knock-out medicine so six hours later the nap turns into just going to bed" and I'd feed her the next morning.)
next_to_normal: (nap)
but you're legit not sure you can stay awake the half-hour until it starts.

You guys. YOU GUYS. I have not, in all my bitching and moaning about ~nausea and ~vomit, discussed how INSANELY TIRED I have been lately. I knew (because it was listed as one of the side effects, and also the pharmacist was like, "No, seriously, don't take this and then try to drive a car") that drowsiness was one of the side effects of Compazine, aka anti-nausea medicine number two. And I recognized that I was sleeping a lot, like more than is normal, even for a dehydrated and malnourished person, and that even the nature of my sleep was not normal.

This is a whole post about sleep )
next_to_normal: Aaron Tveit in Graceland (Mike Warren)
This season's "big bad," such as it were, is a character named Ari Adamian, heir of an Armenian crime family, played by Rhys Coiro.

He also, I have noticed, bears some resemblance to my gastroenterologist.

At least, a younger version of him. And I have no idea if Coiro's accent is at all accurate, but it is similarly foreign enough, given my zero talent for identifying accents, to remind me of my doctor's accent (he's Hungarian). It's the kind of thing where the accent probably wouldn't ping me at all except he LOOKS like him, too, so. 

So now if you watch Graceland, you too can picture my GI doc as a crime boss. And when they make the movie of this part of my life (working title Vomit: The Neverending Story), I know who will be playing Dr. H.
next_to_normal: Cordy making a "yuck" face; text: yuck (Cordy yuck)
I swear, when I started talking about Crohn's on this blog, I didn't intend it to be all "OMG I'M DYING" posts to gain sympathy. To be honest, part of it now is just needing to write it all down just to convince myself this is actually happening because WTF even. 

So, I last posted on... what was it, Tuesday, right. And I was having some trouble with vomit. So yeah, that continued, and worsened, and I went to the doctor on Thursday, and he sent me to the ER for an immediate abdominal/pelvis CT scan to check for any intestinal blockage. Well, "immediate" and "ER" aren't really things that go together, unless you are literally bleeding from a gunshot wound, but apparently normal radiology places don't like walk-ins demanding same-day scans at 3pm, so the ER was better than nothing? (Easy to say when you are the doctor ordering this, and not the person who has to sit in the ER for 9 hours.)

I spent most of it in an actual bed, rather than sitting in the waiting room or a hallway or something, so that's a plus. And let me say that every single person who worked there was unfailingly nice to me. But it took 9 hours just to get a CT scan, which seems a tad inefficient. While I was there, though, I also got a liter of IV fluids, since I was horribly dehydrated after several days of vomiting and diarrhea. That actually helped a lot, I think, and possibly kept me from vomiting again until I went back to my doctor on Friday morning. 

The scan showed no blockage, which: yay! but also: that means we still don't know why I'm vomiting. My doctor no longer thinks it's just a side effect of the Humira, because a.) it just got crazy worse with no corresponding increase in dosage, and b.) I was actually on a much higher dose back when I first started the drug trial (indeed, that was the entire POINT of the trial), and I wasn't vomiting then. So *shrug emoji*.

End result: I am now on a new, srs bsns anti-nausea medicine (which also apparently doubles as an anti-psychotic) and have been eating solid foods for the past two days without incident. Hopefully this means our long national nightmare is over, and I can just go back to the business of feeling shitty for the usual reasons. 

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