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Monday, March 5, 2018

The Story So Far

I have not written to you guys in quite a while. Like, months. Like, half a year, which is super polite of me. If you follow us on Instagram (which incidentally, fucking follow us on Instagram!), then you kind of already know what’s going on, but if not then here is your bi-annual update.

A few days before we went to the ER.
I was not feeling well this summer. I was really tired all the time. I was not able to focus on reading. I could only read a few pages at a time. I just didn’t really feel like doing anything, not even going to the pool to sit and read. Reading is a passion of mine. And spending four weeks reading a young adult novel about pubescent love really was a little excessive. Looking back, I should have known something was wrong.

On July 22nd, I was so proud of myself because I actually went and adulted. I went and got a driver’s license for the state that I actually live in, which I haven’t had since we left North Carolina over five years ago. Of course, this was EXHAUSTING so when we got home I took a nap. I woke up with my hands really itching for no apparent reason, but wrote it off as bug bites or some other summer time annoyance. And then that night, chatting with Pickel on Skype noticed that now my feet were also super itchy. Nothing was helping. Not lotion. Not scratching. Not heat. Not cold. Not hydrocortizone cream, not Benadryl pills. Nothing gave me relief and it started spreading over my whole body. By the time I went to bed I could not fucking stand it. It was everywhere. Between my toes, on my stomach, my thighs, the backs of my knees. Every inch of my body. The inside of my ears, which I didn’t even know COULD itch, were fucking itchy. That was a Saturday. Sunday was just as bad.
I couldn’t sleep the whole weekend because if I stopped scratching the bottom of my feet, they would start hurting; The itching was so intense that if I stopped and let it build, it felt like searing coals were being held against the bottom of my feet. Which I had never had happen before. I didn’t know that was even a thing, I didn't know that the sensation of itching could become excruciating pain.

Monday I went to work, despite the fact that I was fidgeting like a child in a communion dress.My new nickname became Puppy because every time somebody turned their back on me, I was scratching some body part, any time I got away from patients, I was scratching.

My doctor said, “You should probably get blood work done, that’s not normal.”
I said I’d go to a doctor that afternoon and have them order stuff. So I go see a doctor (note: that's how bad the itching actually was. I never go to the doctor unless they're holding out on my prescriptions or I've puked on a patient.) It was a walk-in, but it was still a family practitioner at one of the health systems here in the area.

He asked if anything changed. I went through the whole shpeel that no, nothing in my environment had changed. "My detergent is the same. My soap is the same. My toothpaste is the same. They haven’t changed my medications in two months. The last change they made was Remicade and that was two and a half months ago and we're 4 doses deep." Finally, we nit picked down to the brands of everything I take. "Now that you mention that, last week I noticed that my Prozac pills were from a different manufacturer." And he said, well stop taking that and it should go away. That’s what it is. Here is some Atarax to help with the itching.

Thanks, doc.

Well the Atarax didn’t help. (Atarax is basically stronger Benadryl.)  So anyway, I’m super itchy, and later that day I sent Pickel a message, “It’s so weird that my pee is so dark, I need to drink more water.” Ok, so I drink about 100 ounces of water a day. I am obsessive about drinking water because I put so much crap into my body between the medicine that I take and my poor choice in diet. I feel that I owe it to my body to flush things out. So I sent her that and she was like, huh that’s weird, and then I didn’t think anything of it again.

A few days later I started throwing up every time I ate. I’ve had gastroparesis in the past. That was always like an hour later, and your stomach feels too heavy and then you realize that you need to throw everything up because it’s never going to move. This was like, 15-20 minutes after I had eaten. And it was almost instantaneous. If I ate, I got nauseas. And if I did throw it up, it was very clearly being digested because at this point in my life, I’m good at identifying whether my puke is mid digestion or just hanging out taking up space. So, I just blame that on a history of having a bad stomach, it's true that it hasn’t been good since I had the gastroparesis. And I just thought "oh it will get better."  No fever this whole time, so I wasn’t super worried.

I thought the fatigue was just from being me, I’m always tired. I’m fucking tired- that’s what I always am. Then I started having lower digestive issues and again just thought I had a bad stomach. A week later on Monday, my husband mentioned that my eyes looked yellow to him. I looked at them and I was like shut up, it’s the lighting. It’s fine. They might be a little red, I may have some allergies going on, but everything is fine. (You might recall that I work for an eye doctor. Someone I didn't ever consult about my husband's concern.)

Then that Thursday I had my next Remicade infusion. I showed up and they asked, "Has anything changed?" Well yeah, I’ve got this uncontrollable full body itching that they put me on Atarax for and it’s not getting better, but the doctor said it was this. The nurse was super concerned and she was looking at my eyes. She said, "well I need to go double check with the doctor." So she goes and double checks with the doctor who was looking at the note from the original doctor because they were in the same health network. And she said no it’s ok, so they gave it to me, although Cindy (the nurse) was still apprehensive. The next day I was off work. I stayed in bed. Then Saturday, the day after that, we went to the mall to get some bath stuff (I was taking baths to help with the itching. Soaking myself in scalding water was about the only way to dull the itch. Of course, that wasn't sitting well with my skin, which required copious amounts of oils etc to keep it moisturized through all this.) I couldn’t walk from one story to another, I had to sit down because I was so tired.

Jaundice, or just trying to match
my sweatshirt?
It was August at this point, so I was wearing shorts. My husband was like, "Your skin is yellow now. Something is wrong." So I looked down, and I was like, yeah ok my skin looks off, I will acknowledge that point. And once again, said well it’s probably fine; I’ll call the doctor on Monday.

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."

They run their tests and come back to say they need more blood and start an IV. And then they come back and say they need more blood. And then they needed a CT. And then they needed an MRI and an ultrasound somewhere in there. Finally a surgical resident comes in and starts asking me all the same questions. Then another surgical resident comes in and starts asking me the same questions. And then ANOTHER surgical resident comes in and asks me the same questions. (I get it, it's a teaching hospital, use me as a tool, it's fine.)

Ok, yeah, even I can't make a joke out of
that one.
Then, the resident medical physician comes in and sits down- which is never good, you always want your ER doctor hovering by the door waiting to make a quick exit- and says, "we need to admit you because your numbers are very abnormal and your gall bladder is clear and your ducts are clear so it’s not a stone, and it’s not a blockage. So we need to keep you here." And I was like, ok, well, what are the actual numbers? (I am a firm believer in the idea of "average" and "within normal limits" meaning that slightly elevated isn't always something to get alarmed about.) "Well, a normal ALT, which is one of the liver enzymes, is below forty" I said ok. "Yours is over a thousand." I mean, what the actual fuck, right?

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.)

For the past four weeks I have been battling with insurance to try to get the fucking Orencia covered. They initially said they would pay for the medicine but they won’t pay for the location, which was the same location they had been paying for with the Remicade. So now they want to do it at home, which I can see people really liking that idea, but I live in a one bedroom apartment with a dog and a cat and my husband who works from home out of the living room. So, it’s super inconvenient having people coming over to the house while he’s answering the phone, which means we all have to be locked in the bedroom with the dog and the cat and we have to be quiet. Hopefully, in the next few days we’ll get the final approval from the insurance and they can schedule that pretty quickly because I have been living out of an ibuprofen bottle whether it’s good for my liver or not, because I can’t function without something to take the edge off.

                            ✯         ✯           ✯           ✯         ✯        ✯           ✯                 ✯
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.)

Wednesday, July 12, 2017


Where. The. Eff. Have I been??

Obviously you can't answer that. And honestly, I don't know if I can either.

Where do I start?
I guess with the last place I left off.
Which was with a sort of optimistic post about the new year. And then... I just sort of lost focus. It was tough, trying to get settled into the new job, the new state, being back near my family. I got more tired than I already was.

Whatever, there's no real excuse. (Although I will say that I am pretty good about posting shit to Instagram, which also shares to Tumblr and Twitter, so if you aren't following on there you're missing out.) So instead of trying to wax poetic about the why of my laziness, why not just catch you up?

I started getting infusions!  The bright side of moving is that you have to get new doctors, which means you get a stronger say in what is about to happen  to you. They might have the notes from the previous doctors, but they will still- for the first few visits, at least-   follow your lead in what the next steps are. And I laid it out very bluntly: I was tired us using Enbrel weekly and feeling like hell for a day afterwards. I wanted infusions. And if she wasn't comfortable going in that direction I would find someone who was.
Now, this doctor is newer to the area and doesn't have a huge base of clients yet, so in that way I had another leg up. But more importantly, I explained to here that I ALREADY knew the risks of moving forward. That was off her shoulder's. I totally got it.
So then, I got what I wanted.
And I LOVE it. I still don't feel well for about a day afterwards, and I'm beyond exhausted the day I actually get the infusion. But do you know how infusions work? You sit there for THREE HOURS in a comfortable recliner chair, with free wi-fi and TVs, as many pillows and blankets as you could want, and you can bring food. It is basically a reader's PARADISE! I look forward to my infusions. The staff is so nice, and they go out of their way to remember you. They seem to actually care about how things are progressing, and I love the environment they have created. (Don't get me wrong, this isn't one of those bananna bag luxe places people like Britney Spears and Rihanna go to after a night of drinking, chic is not something they do. But CARING is. )I bring coloring books, I bring my books for my challenge (see The Belle of the Bookcase for my reviews of what I've read so far!)

But the question I'm sure you're all dying to ask is: are the infusions helping?? And the answer is YES! I'm not swallowing ibuprofen like they're single color Skittles. I've been able to go and do things (not a LOT of things, lets not get crazy, but a few things. Family things.) I've even been starting to plan out some photography stuff.

So basically what I'm saying is that, HOPEFULLY you'll be hearing from me more frequently again. Here's to keeping up promises!

Friday, May 12, 2017


And unfortunately it's NOT for party rocking. I went through a pretty rough emotional patch trying to straighten out life after the move, and I just needed some time folded in on myself to find my voice again. In the mean time I've been reading a lot (since down time is my strong suit), and I started a sister blog called Belle of the Bookcase where you can read my reviews or thoughts.
I am in the process of getting my groove back, so if you'll excuse me, I have a meeting with a Llama who says he can help me...

Saturday, February 4, 2017


I'm hiding from y'all.  I don't have e anything funny to say, I don't have e anything to upbeat to chatter on about. And honestly, I'm not in the mood to have a break through about my body or mind right now.  Right now I want to wallow, and I'm sorry.  So for now I'm going to stay in my Heaturrito (a burrito made of a heat blanket)  and wallow with Vanilla Coke.  But I love you all, I will be back.

Sunday, January 15, 2017

A New Year, A New Hope

You didn't really think I was going to make a Star Wars reference
and NOT include something from Carrie Fisher, did you?
A pioneer for speaking out against the stigma on mental illness,
but so much of her inspirational work applies to chronic pain as well.
You will be missed. 
First and foremost, let me say- Happy New Year everybody! 2016 was rough for the world as a collective, between beloved celebrities dying and what felt like so many more attacks on each other for extremist reasons than we've seen in past years.
I don't remember if I talked about it on here, but I gave up Facebook for a while this past year. I remember it was right after the shooting of that The Voice singer immediately followed by the nightclub in Orlando ordeal. I saw the candidates for President turning it into a political talking point LITERALLY before the victims bodies were cold, before their families could be notified. Then the last straw was the little boy who was attacked by an alligator at a Disney Resort and died. The news itself was almost too much to cope with, but the absolute vile rudeness I saw  when people talked about  the parents. "Where were the parents??" (They were right there, horrified as one tried to protect their other child and the other hopelessly fought against a wild animal to save his son, By.The.Way.) There was too much hate. There were terror attacks in Nice, France, who was still emotionally recovering from the attacks the year before. I couldn't take the hatred coming from "sane" human beings that I had chosen to be digitally connected to, and so, I cut the connection. My account still existed, and pictures still got posted from Instagram, and tweets still got posted from Twitter. But I didn't log on. I deleted the app from my phone and my tablet. If I really needed to look at something I could get on my computer.
And that helped. I meditated a lot (Using a program I've mentioned before called Calm), I sought out news articles about the good that was happening. The programs to raise money for those affected, the people sharing pictures of that Disney beach just hours before saying "It could have been my child, it could have been anyone's child." Those warmed me, and I started to see the glimmer of humanity shining through.


This is a different year. This is a year that we can all change, we can change it ourselves by being nice to each other. By taking the half a second that it takes to think through a situation from the other person's state of mind (Maybe the parent of the eaten child needs, like, a WEEK before you start tearing into them? Just to cope a little?) We can change it ourselves by remembering that we all have a back story, but we learn about each other like an episode of Lost: you don't learn the crucial information about a person until AFTER you kinda needed it to happen.

Basically, why don't we all just chill?

Just. Chill.


You don't like the President? Fine. But do something other than flap your mouth. (And honestly, if you could learn about the political system before you do anything that would be GREAT.) You want a new group of people to be able to marry some other group of people? Super! But, again, DO something about it.

This year can be different because we can DO these things, and we can do them with the aforementioned chill.

Carrie Fisher was buried in an urn shaped like a Prozac pill because she was an incredible mouthpiece for the movement to destigmatize mental illness. So let's all take a page and be a little more chill for 2017.

Monday, January 2, 2017

Belated post from just after Thanksgiving

Holy shit, what a ride the past month has been.

I had Thanksgiving dinner with my family for the first time in like ELEVEN years. I've never been so happy for family drama. Although, apparently, it never stops happening, so it looks like I've got plenty of entertainment ahead.

It is stressful as fuck moving, I think I made that pretty clear. I doubt I even NEEDED to make it clear, because it is universally known that moving is the fucking worst.

But being new sucks too. I don't know where anything is anymore. If it weren't for Google Maps I would probably A) not have seen the Wes Craven style bumfuck areas of Pennsylvania and B) only know how to to get to the strip mall a half mile down the road because I only have to make one turn. So everything in life is balanced, I guess. Even still, I barely know how to get to the grocery store, the Wal-Mart or Target, the mall, or the fast food places. I'm lucky because in this town they're all located within 1 square mile of a main intersection. All I have to remember is what stuff is to the right and what stuff is to the left. (Read: What stuff is behind White Castle, and what stuff is behind Chic-Fil-A.)

And looking for a job. Oh. My. God. I think I'm pretty good at my job, but nothing will make you feel like an idiotic fraud faster than an interview at a new office. Every question feels like a trick, and you start to question the fact that for years doctors have been letting you interact with patients when you are so clearly a moron. Yet, then you get the job.

Then you're the new person. You have to learn new things, new people, new culture, and in my case the specific way each doctor wants you to do your job. For any given medical problem there are probably at least 3 different words to refer to it by, So,[WARNING- OPHTHALMOLOGY NERD ALERT!!!] even though I know that when Dr. A says "cellophane" it goes in the macula, then I work with Dr. B. and he says "epiretinal membrane" I end up looking at him with a blank face, and he thinks I have brain damage. One diagnosis can be called cellophane, cellophane maculopathy, epiretinal membrane, ERM, or a macular pucker. If you don't have an in depth knowledge of the layers of the eye and the way they work together, you can't necessarily just "figure out" what the doctor is referring to.

Most people probably don't have THAT problem, but I'm sure you can think of something similar to relate to. It's emotionally draining to go from being an expert to being the new kid with a notebook, who knows WHAT to do but not HOW. I am terrible at being the new person, I hate it. I don't stand still well, I have a hard time just standing by and watching something I know how to do happen. So I end up interrupting, getting in someone's way by trying to be helpful, that kind of shit. You're desperate to prove yourself, but there's also that nagging voice (in my head, anyway) that points out how embarrassing it would be if you were wrong and you don't want them to think you can be wrong.

By the time I get home, my whole body ached from working, my brain aches from learning and trying to be extra super good, and I don't even have the energy to browse Facebook. Tonight I fell asleep while looking through Instagram, I was so sleepy that before 6:00 I was straight up drool out the mouth asleep with a cat and a phone on my chest.

Honestly, if I never moved again I wouldn't be super upset about it. This apartment is nice and, frankly, I would rather set fire to my stuff than pack it again (and again, if a fire detective is reading this, that is only a joke. I am Smaug with my pile of golden sundries.) I know it has to happen, though, if I want to also have that nice life living in my own house. Because the chances of being able to build a house around this apartment are PROBABLY pretty slim. And the people upstairs may notice.