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[personal profile] next_to_normal
Hi, y'all.


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


so let's just start with the catching up.


Chicken pox passed, I was all set to start this goddamned clinical trial which I have been trying to get into since February and it's now April, and then the complete fuck-up of a clinical trial coordinator that I was working with fucked up about twelve more times. In fairness, the initial delay wasn't her fault, since I don't think anyone anticipated the chicken pox thing. But then we had to delay restarting the trial because the doctor put me back on Prednisone after the pox and WHOOPS the trial coordinator forgot to check what my dosage was and she didn't notice until like three days before my colonoscopy that it was too high for the study, so we had to wait two weeks while I weaned down to an acceptable dosage.

FINALLY I went for my (SEVENTH) fucking colonoscopy, during which she FUCKED UP THE COLONOSCOPY RECORDING, and so the study people wanted me to redo it AGAIN. Fortunately, my doctor put his foot down and was like "fuck no" because 3 colonoscopies in 3 months is probably against the Geneva Conventions or something.

So the study people agreed to let me in the goddamned trial - except then there was another snag with how I was in the system, because the fuck-up coordinator entered me as a new patient when I rescreened, so I was in there twice and it fucked up all their electronic data tracking. So that took like a whole day to sort out, which the fuck-up coordinator didn't even DO, her boss fixed it all for her, and basically I wasted a whole day at the doctor's office, DID NOT GET THE STUDY DRUG, and had to go back the next week. 

At which point I was technically out of the window, because it had been more than two weeks since my colonoscopy (this trial has a lot of fucking rules), but I think they basically threw up their hands and gave up on accuracy when it comes to me because we'd already broken like twelve of the rules anyway with the screening and rescreening and did I mention that apparently the fuck-up coordinator wasn't reporting a TON OF SHIT she was supposed to be reporting? But no one realized it until her boss stepped into straighten out the electronic data issue, and then they were like, "Um, she is a fuck-up who is no longer working on your case."

Except apparently one of the issues with her is that she ignores emails? Because when I came in for my new appointment, THERE SHE WAS, acting like nothing at all had happened and she didn't get kicked off my study or anything. And I guess no one confronted her about it because they didn't want to make a scene in front of patients? But LOL I have never seen a more direct correlation between blood pressure and mood but one of the things they do for this study is they have to take your blood pressure every 2 minutes like 3 times in a row, and they did it the first time and it was fine, 120/80, and then she walked in the room for the second test and I swear to God it shot up to like 165/110 and wouldn't go down, and everyone freaked the fuck out, and finally I was like, "I think [Lady Fuck-Up] is going to have to leave the room." And whaddya know, back to normal, lol.

ANYWAY, so that day was super-awkward, because she apparently hadn't gotten the memo that I was super-pissed at her for delaying my treatment with her fuck-ups and that she was in trouble for fucking up the trial? But then the next time I went in for an appointment, she had been FIRED and my study drug actually sort of seemed to be working, so YAY!


Unfortunately, unrelated to the study (except in the general sense that I HAVE CROHN'S AND CROHN'S IS A BITCH AND A HALF), I managed to develop an anal abscess that required surgery to drain the pus and insert a thing called a Seton, because unlike a normal fucking human being, you can't just drain the abscess and it'll go away, because Crohn's shit NEVER HEALS. So the risk is that it will turn into a fistula that connects your bowel to... something else, and then you will have poo coming out places poo shouldn't go, so they insert the Seton, which apparently is basically a spout for continual drainage of the pus, because Crohn's is DISGUSTING. Seriously. Like the diarrhea was not enough? Now there is PUS? And P.S. all of this is happening THE WEEK BEFORE I AM SUPPOSED TO LEAVE FOR VACATION.

Yeah, I went to the doctor on a Tuesday, was told I'd be having surgery on that Thursday, and was supposed to get on a plane to Italy on Sunday. I was DELIGHTED, LET ME TELL YOU.

I almost didn't get to go on vacation. It was supposed to be an outpatient procedure, but the infection apparently went a lot deeper than the surgeon thought, and I spiked a fever while I was in surgery, so they wanted to keep me in the hospital overnight, and the surgeon was like, "I have SERIOUS RESERVATIONS about you leaving the country." So my mother is unpacking suitcases and frantically reading the cancellation policy on our travel insurance. But then I guess I didn't get any worse overnight, because the next day the surgeon changed her mind and they released me from the hospital and she said she was okay with me traveling. (I told my regular GI doctor that I was still going and he was like, "Of course you are! Take antibiotics! Have fun!" lol)

I was not allowed to go swimming, which was kind of a bummer, and my carry-on bag was basically a full medical supply kit - I brought gauze pads, ointment, Q-Tips, maxi pads, wet wipes, and seven different kinds of medication with me - but GODDAMMIT I WAS GOING TO ITALY.


By plane, duh.

So yes, Italy. I went with my parents. We did like 4 days in Rome, which were crazy hectic tourist days, because we had to do ALL THE THINGS and it was unbelievably hot and crowded and don't ever go to Rome in the summer, it is awful, but it was also pretty cool and like, Rome really fucking hot is better than no Rome? Then we spent like a week in Florence, which was also really fucking hot but slightly less crowded and also kind of wonderful because FREE APARTMENT. My mom work(ed) with a law professor who has, for the last 7 years, been teaching in Florence, but he comes home for the summers and he has been saying for years, "If you ever want to go and use the apartment when I'm not there, go ahead," so we finally took him up on it - otherwise we never would have gone in the summer, but free is free, y'all.

Still, my mom and I kept a journal, and the title of that journal is:

"All of My Clothes Are Sweaty: A Family Vacation
The Worst Hair Days of Our Lives"

Florence was a slightly slower pace, because there's less touristy stuff to see, and we had a lot more time to see it, so we could go out in the morning and do, like, one thing, and then come home and take naps and showers and then go out for dinner when it was cooler, so that was nice. And it was fun having an apartment, even if we couldn't always get things to work (my mom actually did laundry by hand and hung it out the window to dry because she didn't even want to attempt the washing machine, lol). And the food was soooooo good, you guys. I ate SO MUCH PASTA and SO MUCH GELATO (and thus SO MUCH LACTAID, lol), and you'd think the Crohn's would be a DISASTER, but it actually wasn't too bad, especially considering I'd also just had surgery. Maybe it was the heavy-duty painkillers they gave me? Although, pasta is actually one of my staples during Crohn's flares. In any case, somehow I still managed to lose about 5 pounds during the trip (it was probably all the sweating, lol). 

Then the last few days, we rented a car and drove from town to town, just to see some of the rest of Tuscany, so we went to Volterra and Montalcino (where my parents basically did nothing but drink wine - I, alas, could not drink, being on ninety different medications, including narcotics), and then we spent our last night at the beach in Santa Marinella, back near Rome so we'd be close to the airport. And all three hotels had pools, so while we made a vague gesture at sightseeing, we also spent some quality relaxing time at the pool (although, again, I was not allowed to actually swim, BOO).


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?

Date: Jul. 22nd, 2016 01:50 am (UTC)
umadoshi: (Elementary - Joan & mug ( justgraphics3))
From: [personal profile] umadoshi
Other than the heat and lack of swimming, the vacation sounds wonderful. I'm so glad you were able to go!

Fingers crossed for both the antibiotics and the study drug doing good things.
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