|A few days before we went to the ER.|
|Jaundice, or just trying to match|
But then as we were walking around the mall, me not able to catch my breath, and I can’t walk around, and everything has been just been so weird, finally I agreed to go to the emergency room. But not until the next day. Because fuck me twice on Sunday if I’m going to go to the emergency room on Saturday night in a college town. That’s the stupidest decision I could possibly make, I still wouldn't have been seen until around ten AM the next morning anyway. So we went on Sunday, and they asked me my symptoms. And I had kind of put two and two together by this point that maybe the stomach issues and yellow skin were connected with the itching, and I thought it was a gall bladder issue. So, I didn’t eat anything when I woke up on Sunday and went to the hospital. I told them everything and said I didn’t know they were symptoms at the time but my pee has been weird and my poop has been weird and I’ve been throwing up, which always gets a look when they’re like, "what do you mean you didn’t think throwing up was a symptom?" And I just laugh and say, "aww that’s cute."
|Ok, yeah, even I can't make a joke out of|
Anyway, so they admit me and they take more blood (which I was, honestly, super surprised I still had any left for them to take by that point.) and then they take more blood, and I’m stuck there for three days. And they keep taking blood every 12 hours. I meet every resident- I’m pretty sure- of this fucking hospital from three different departments. They called in a gastroenterologist; I got to meet his residents as well. Finally, after 3 days of them not knowing what was wrong, which equals not knowing how to fix it, and with the numbers not really going down but kind of going down, they let me go home. They said we are only giving you saline at this point, we will give you dietary restrictions, and you can’t take any of your medications except Lyrica and Prozac. So, after weeks of a bland boring diet, barely being medicated, STILL ITCHING, and being on bedrest, then came an MRI of the liver with contrast, then came a liver biopsy, and then came an endoscopy. They finally decided, after they had done every test that could possibly be run using the currently available diagnostic codes, that the only thing it could have possibly been was the Remicade. And that fucking blows because the Remicade was actually working on the RA and I was feeling better. I was actually doing shit before it all hit the fan. And my rheumatologist and the gastroenterologist both said that in all the years they had been practicing, in all the years they had been prescribing Remicade, they had always read about this super rare hepatic reaction, they had seen it in the literature, but they have never actually seen a person have this response. So yay for me for being the one in ten thousand (actual statistic.) that they got to see in their careers. That’s just fucking fabulous. Now, they’ve decided to put me on Orencia, which is not an anti- TNF inhibitor like Remicade, so they are hoping I won’t have the same reaction. There’s really no way for them to know until they put me on it. So basically, the current treatment plan is: take this medicine and we’ll keep checking your blood tests every flipping month and if anything seems different call us immediately and we’ll check your blood again. I was getting my blood checked so often that not only did the people at the lab know my name, they noticed when I changed how I did my hair (which is to say I washed it.) They still noticed, and that was nice, but maybe too nice. Those are not the people I want to notice that. (Actually, I don’t want anyone to notice when I have and have not washed my hair, but I guess you have to choose your battles.)
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I've had three doses of Orencia since starting this blog post. I honestly don't have the energy to think about my body unless I absolutely have to right now. So, for a while, I will be officially taking a hiatus from this blog (because the months of being non communicado before this one post were "unofficial"). I still have my book blog at www.belleofthebookcase.com which I will be updating, because about all I still have the energy to do is read. And I will still be updating the Instagram for this blog as things happen. But for now, I need to take a step back from thinking about my body and what it is doing and why, and try to think about the parts of my life that aren't affected by it (ie reading.)
I love you all and hope that soon the Orencia will start working and I will feel back to how I did before everything went to shit this summer. Until then, hopefully I'll see you on the 'gram. (Did that sound cool? I hope so.)