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. 
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: (what is this I don't even)
Hope everyone on the east coast survived snowzilla, or whatever we're calling it. Reports are that my area got somewhere between 17 and 24 inches (there is some hilarious ~scandal about the measuring techniques used at Reagan National Airport not being ~officially sanctioned by the National Weather Service, and therefore their 17.8" total is suspect and probably too low).

SPEAKING OF THE AIRPORT, I shouldn't even BE here right now. I should be in sunny, snow-free Florida. Cut for complaining )

On another note, I totally #wontheblizzard, because it was so windy, there is actually no snow on my car? I guess I got the low end of the drift. Since I live in an apartment building, there really is no "digging out" necessary - they shovel all the walkways and plow the parking lot, so all there ever is to do is clear snow off my car, and that's... negligible. I wouldn't park at Dulles anyway, so my plan was to take a shuttle to the airport and hope it all melts by the time I get back, but I probably COULD drive my car if I wanted to. (I do not want to.) 

There has been a sort of entertaining "will I run out of food?" thing happening, as well. Unlike everyone else who went nutso stocking up at the grocery store, I didn't want a lot of food in the house because I knew I was leaving. But because of the canceled flight, I ended up being home - and needing to eat - for an extra day and a half longer than expected. WHOOPS. Turned out I was fine, but if the storm had been worse, and I hadn't been able to make the trip at all, I'd probably be a little concerned about the coming week, lol. On Thursday, one of my coworkers was like, "Just order five days' worth of Chinese food tonight and keep it in your freezer, just in case," and at one point on Friday night, I did wonder if it was too late to order a pizza, lol. 

7:54 PM UPDATE: MY CONFERENCE JUST GOT CANCELED. HOW SOON AFTER A BLIZZARD CAN ONE REASONABLY ORDER DELIVERY?

 (j/k I am fine, I will not starve, but I will be super-sad not to be in Florida)
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. 
next_to_normal: (Buffy sigh)
Haven't had much to say, sadly. Health continues to be a clusterfuck. I did get anti-nausea medicine that helped for a while (until it didn't), and I went on vacation, which was fun and relaxing (except when it wasn't), and now everything is terrible.

Read more... )
next_to_normal: black kitten on white background; text: stomp. stomp. stomp. (kitty stomp)
The last couple days I've been... well. "Better" is not really accurate. The abdominal pain has been somewhat less, but the nausea is off the charts.

I feel like I am going to throw up ALL THE TIME. But I very rarely ever actually throw up, so it's just this constant state of feeling like I could at any moment? Like, you know that feeling when you're on a roller coaster and you hit the big drop and your stomach lurches? I'm basically walking around feeling like that all day.

It varies in intensity throughout the day, from "oh dear that's unpleasant" to "holy shit get the barf bucket!" but in a way, that's actually easier to deal with than the pain, because at least it is not physically debilitating. You know, as long as I just keep reminding myself that I'm probably not going to hurl, and so no matter how much it might feel like it, I can probably just keep going about my day and be (sort of, relatively) fine.

And then I threw up this morning. So much for that theory.

Mental health blather )
next_to_normal: (Buffy ugh)
Sorry if this ends up becoming The Crohn's Blog for a while. It's been sort of all-consuming lately. I've been feeling more depressed and anxious about it than usual for some reason. Maybe it's the duration that's getting to me? I don't think I actually feel worse than I did when I was first diagnosed - when I actually ended up in the hospital - but it seems less tolerable than it was six years ago.

What happened to the girl who would throw up in the morning and still go to work, because it was only worth a sick day if I threw up more than once? I mean, obviously that's sort of crazy, but I feel like I was a lot tougher back then and shit has just worn me down so that half the time now I don't even want to get out of bed in the morning, and I've been taking days off far more than I ever thought I would. And my boss has been unbelievably accommodating in letting me work from home, but I also feel guilty because whether I'm in the office or not, I know I'm not getting nearly as much done as I would if I weren't sick. (Then again, this job requires me to do actual work. It was a lot easier to go to the office at my old job, no matter how sick I felt, when 80% of the time I was there by myself and just watching Netflix.)

And I also just don't have a lot of optimism left. We've run through most of the major drug options without success. I can keep hopping from clinical trial to clinical trial hoping for a miracle, but that in itself is exhausting, because it means more doctor's visits and more colonoscopies, and half the time it doesn't have any effect at all.

I have two more weeks before I can switch to the weekly Humira dose. If that doesn't improve things, then after 8 more weeks I can try another study, this time for an antibiotic. I'm just... tired. Of all of it. And wondering how many more things there are to try before the only options are steroids or surgery, both of which are awful choices.

Also, GOD I MISS FOOD. I've been mostly eating pastina, soup, and Ensure, and getting kinda sick of it. This is why restrictive diets don't work, because when I am food-deprived, I crave EVERYTHING. Like, we're at the point where I hear about Pizza Hut's new hot dog stuffed crust and think, "OMG THAT SOUNDS DELICIOUS," even if it also makes me feel a little nauseous thinking about it. That's not right, y'all.

Cut for weight/body stuff )
next_to_normal: (nap)
Though it was touch and go for a while there.

Good lord, it has been over a month since I last posted anything and *mumbledy mumble* since I last responded to comments, because I am a terrible human being. Let's see... well, on the Crohn's front, the Humira worked really well for a while until it didn't, and now I am sick and kinda miserable again. We are running out of new drugs to try, though, so the best option might be to stick with the injections. The thing about Humira is that it has been on the market for years, but it is generally assumed that the FDA-approved dosage is not sufficient for a lot of people, hence why they are doing clinical trials at a higher dose like the one I just did. And I will say, when I was getting 4 injections a week, I felt a LOT better. But  after the first month, I dropped down to the approved dose of one injection every other week, which ain't doing it for me. Once the trial's over, I can maybe go up to weekly instead of every other, so hopefully that's enough? I have a few more weeks on this clinical trial and then another colonoscopy YAY

On the plus side, I have not regained the 15 pounds I lost, and I have acquired a new skill in administering subcutaneous injections? \o/

This whole trial has coincided - naturally! - with the BUSIEST TIME OF THE YEAR in work, since we had our big conference thingy last week, in which I have a WHOLE DAY that I am responsible for and it basically takes over my life for the six weeks prior. It went really well and everyone was happy and then I came home and literally slept for 18 hours. Oddly enough, prior to the conference, I'd been having some really unpleasant insomnia, possibly as a side effect of the Humira? But apparently I managed to cure that by working myself to the point that I literally could not stay awake any longer. (Or the insomnia's just not affecting me as much now that I'm on a lower dose of the drug.) Yay?

And of course, because Marvel is COMPLETELY INCONSIDERATE about scheduling their movie premieres during the WORST WEEK OF MY LIFE, I have not had the opportunity to squee over Avengers: Age of Ultron. Then again, perhaps it was for the best that I wasn't posting linkspams during the press tour, because it was a pretty epic shitshow, lol. Seriously. Joss was tired and cranky and then quit Twitter. RDJ walked out of a really uncomfortable interview. Chris Evans was noticeably drunk for the whole thing. Jeremy Renner was a douche. And poor Mark Ruffalo was publicly begging his own employers to put out some goddamned Black Widow merchandise because Disney doesn't care about girl fans.

I did get to see the movie, and I will have a long rambly post about it at some point. I was kind of hoping to see it again before I tried to gather my thoughts, since I was fairly exhausted and just wanted to squeeze it in before the conference started because I knew if I didn't, I'd totally spoil myself. But I'm not sure when I'm going again, and I have almost 2,000 words written, lol, so we'll see. 

I feel like there are a lot of TV things I should want to talk about, but it's all a bit of a blur. I sort of gave up on posting linkspams, what with being exhausted and not having any time. But I'm actually not sure I want to go back to them? Way back in yesteryear, I used to have a lot more ~thoughts and, like, wrote actual posts about actual things, and I would like to do more of that, if I can remember how to sentence the words and whatnot. The linkspamming is sort of a shortcut to say "hey things are happening with things I care about!" without having to put a lot of thought into it, whereas ideally I would maybe address fewer of those things but actually have something to say about them? I don't know. Maybe I will just disappear for another six weeks and only pop up to reassure you I am still breathing.

So, how have YOU been? What's new? What have I missed?
next_to_normal: Cosima in black and white (Cosima)
Yes, I am typing this post on my shiny new Toshiba laptop. \o/ After four years, my poor Samsung has officially kicked its bucket, so my mother and I took a trip to Best Buy while she was here this weekend to get a new one. And I managed to do it without endlessly spamming y'all like last time, so good job me.

I also managed to acquire some kind of medieval plague this weekend, so that's fun. Apparently it disturbs Chelsea, if the withering stare at my death rattle is any indication. Earlier, I hacked up a lung and she went and hid under the piano. WHO'S GOING TO FEED YOU WHEN I'M DEAD, YOU UNGRATEFUL CAT.

oh god she'll probably just gnaw on my corpse

* Teaser for season 6 of Community on Yahoo.

* Outlander has already been renewed for a second season. I've only watched the first episode, but I like it so far, so yay? The Leftovers, which I've seen enough of to like, also got a second season renewal.

* There are neurological reasons why we're so attached to the music we listened to as teenagers. Maybe that's why the Guardians of the Galaxy soundtrack hit #1, despite being a literal mix-tape of previously released songs.

* If it makes you as happy as it makes me, enjoy dancing baby Groot.

* Will Guardians of the Galaxy's success make Marvel too cocky?

* A biologist uses science to explain how to make superheroes.

* A spectator shot a possibly spoilery video of Agents of SHIELD filming season 2.

* Here's a handy round-up of links for historical context for Steve Rogers as a dude from the 1940s.

* NBC is developing a TV musical version of Robin Hood.

* Director Rob Marshall talks about the Into the Woods movie, ostensibly to reassure us that he's being faithful to the original, but actually mentioning even more changes (the flashbacks, no "Ever After," retooling the second act) I hadn't heard reported before.

* Tom Hiddleston is being considered for a remake of Ben-Hur.

* George R. R. Martin doesn't understand why women want him to write more gay sex scenes, because apparently he (and they) have never heard of the internet.

Blast!

Aug. 4th, 2012 12:31 pm
next_to_normal: Tony Stark pouting; text: *pout* (pout)
Vacation's over, but I still can't catch up on my flist. Discovered that my laptop wasn't charging the other day. Turns out I need a new power cord, which I've ordered from Amazon. On my kindle until it gets here. :(
next_to_normal: (Annie scream)
Ugh, I have had an unbelievably shitty week, mainly work-related. I have zero interest in rehashing the details, but suffice to say that I am looking for a new job even harder than I was before.

Also, remember how I was talking about a vacation? Well, I managed to find super-cheap airfare to Denver ($250 round-trip!) and my mom and I were planning a trip that involved a few days in the city and then driving around to the national parks and other fun stuff. I was excited! I ordered travel books from Amazon! But before they'd even arrived at my house, our entire plan had to be scrapped (part of the work-related shittiness of this week). So now we are back to square one and I am depressed.

If anyone is still paying attention to The Newsroom, have some links.

Also-also, meme. Snagged from [personal profile] aerintine:

Tell me which two fictional characters you think are my parents.
next_to_normal: (Claire Fisher)
Random prompt: How would you rate your self-image?

Oh lord, how long do you have? lol

It's not actually a long post, but for some reason a cut makes me feel better about it )

Moral of the story: Please, guys, ask me questions, so I don't have to fill such maudlin prompts! :-P
next_to_normal: (Caroline looking down)


(language NSFW)

The problem is, I'm only 28, but I totally identify with the 31-year-old. And have done since I was probably 23 or so. This is what happens when you peak at age 5. :-\ I have contemplated doing a personal post on my melancholic ~feels of late, but then I am overwhelmed by the depth of my grossness. (Also, TV, I love you, but you destroy my self-esteem.)

In conclusion: THERE'S NOBODY LEEEEEEEFT! I'M ALL ALOOOOOOOONE!
next_to_normal: (original musical)
Yep, sick again. (Thanks, compromised immune system!) At the moment, I've got a stuffed-up nose, sinus headache, and the beginnings of a sore throat. My boss was complaining he had a cold that started on Friday (he's the kind of wimp who calls out sick because of a cold), so I suspect that's where it came from.

In TV things, has anyone else seen the premieres for Smash and Touch yet? They're both available on Hulu, even though Smash doesn't actually air until after the Super Bowl. I was kinda excited about both, and liked the pilots, so yay! Anyone else have ~feelings?

If you have no idea what I'm talking about, Smash is a behind-the-scenes type drama following the development a new Broadway musical about Marilyn Monroe. It stars Debra Messing, Jack Davenport, Anjelica Huston, and Katharine McPhee as the ingenue competing for the role of Marilyn. Broadway fans might also recognize Megan Hilty and Brian d'Arcy James. Y'all know how I'm a sucker for musicals, and the show appears to feature mostly original songs written for the show-within-a-show. \o/ I would love to see a musical TV show that's not Glee be successful, so here's hoping! Also, it cracked me up in the pilot when Debra Messing goes on a rant about how there are no original musicals on Broadway anymore (they're all based on movies or books or are revivals), and I started singing "Original Musical" from [title of show] to myself...

Touch mainly interested me because it stars Kiefer Sutherland, who is the reason I kept watching 24 way past its prime. He plays the widowed father of a young boy who's been diagnosed with autism and has never spoken. Kiefer believes, however, that his son has been misdiagnosed, that he's trying to find a way to communicate, and that he recognizes patterns in the universe the rest of us can't see. After seeing the first episode, I'm intrigued by the premise, wary of the potential "autism = magical powers" fail, and happy Kiefer is back on my screen.
next_to_normal: (Buffy punchy)
AAARRRRRRGGGGGHHHHHH (aka who wants to hear about my condo woes?)

A story in gifs )
next_to_normal: (is ded)
Heh, so, uh, last night my air conditioner kind of... exploded a little bit? It hasn't been running much, since it's been cooler lately, but last night it started up, and almost immediately, I hear this loud clanking noise. And then, when I go over to the convector to check on it, as soon as I open the top panel, a puff of smoke wafts out, along with a delightful burning smell.

My dad thinks the fan motor broke or something and assures me that it will probably not catch on fire while I am away this weekend. Still, I am wondering whether I should've taught Chelsea how to operate a fire extinguisher.

The other two convector units are fine, which probably has something to do with the fact that they are brand new. Because, when I bought this place, as part of the settlement, the seller had all the units checked and repaired/replaced as necessary, considering that they were all probably at least thirty years old. Two of the three got replaced, but the HVAC technician seemed to think that Smokey McFirestarter in the dining room was just peachy keen! Apparently not.

Anyway, the next time my dad comes down to visit, we'll see if he can fix it.

In other news, it is STILL RAINING. Arks are being discussed. Seriously, yesterday, the creek behind my building was so high it covered the sidewalk! It was back to only-slightly-higher-than-normal levels this morning, though. (Not that it makes a difference to me. I live on the 6th floor, haha.)

next_to_normal: (Annie scream)
THEN I BOARD UP MY WINDOWS UNTIL IT GOES AWAY.

Hahaha, but seriously, housewarming party is supposed to be tonight. :\ FUCK YOU, MOTHER NATURE. IT'S MY PARTY AND I'LL CRY IF I WANT TO.

Perhaps I should've canceled/rescheduled/hid in a bunker, but I already bought all this fooooooood. On the plus side, if the power goes out and the roads flood, I can subsist on hors d'oeuvres for WEEKS. People are all like "Bread! Bottled water!" and I am like "Fancy cheeses and crudites!" I will roast cocktail wieners over candle flames if I have to.

But now I'm all worried that no one will come because they have more common sense than I do and choose to stay indoors during hurricanes. *pouts*
next_to_normal: (Buffy punchy)
UGH. The organization that I work for decided to switch insurance plans, undoubtedly because it's cheaper for them. They didn't give us any choice of plans, but our HR lady's all, "Our premiums have been reduced, isn't that nice for everyone!"

Well, sure, as long as you don't actually use your insurance.

Because while the premiums have been reduced, all the co-pays have gone up, and some of them have DOUBLED. But hey, as long as you don't go to the doctor, you're saving money! Isn't that NICE?

Read more... )
next_to_normal: (Disney hair)
Hey, if Lauren's hair can have its own tag, I think mine deserves at least its own post, lol.

My dad's advice: Wear a hat )
next_to_normal: (Chuck blah)

Another exhausting weekend that makes me wish I had a weekend to recover from my weekend. And this one was even longer than usual! Because it was a holiday weekend, my mom and my aunt (who is not really my aunt, but has been my mom's best friend since approximately age five, so she's basically like my aunt) came to visit me.

It was originally supposed to be just an "Aunt Lynne hasn't seen your apartment yet/let's do fun things in DC" weekend, but since I'm in the throes of condo-searching, that ended up being most of what we did. They did some touristy stuff on their own while I was at work/doing homework/whatever, but we also spent approximately SIX HOURS visiting condos with my realtor. (Who is awesome and I'm so glad my mom thinks he's great, too, because I picked him out all by myself after two kinda sucky realtors.)

So, yeah. Nice to have them here, but not exactly the most relaxing weekend ever. Not to mention that I had to sleep on the sofa bed with my mother because my aunt is not fond of cats and needed to sleep in my bedroom so she could close the door to prevent Chelsea from freaking her out in the middle of the night. My mother is a snoring bed-and-covers-hog, which meant I spent most of the night precariously balanced on the edge of the bed, with no covers, unable to fall asleep due to the obnoxious noise. (In the past, I have thrown pillows, socks, and other (soft) things at her to get her to be quiet when we've shared hotel rooms on vacation.)

On the plus side, I've narrowed down my condo search to three (possibly four) places. I am now mired in indecision because all of them have pros and cons and I can't decide what's most important to me. There may be polling on this in the future.

I'm also feeling kind of crappy, probably because I have a treatment on Friday and my last one is wearing off already. Going out to eat a lot doesn't really help things, either.

I kind of want to do a race or gender swap cast ([livejournal.com profile] penny_lane_42 has inspired me - I actually showed my mother the West Wing race swap, because she's a TWW fan, though she pooh-poohed most of the choices) but don't know what show to tackle. Thoughts?

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