Danger, Will Robinson

When you are chronically ill, hope is a dangerous thing.

At first you do. You hope. You hope fiercely. It’s what gets you through so many doctor appointments and awkward procedures and pain-filled days. Hope is what gets you through. But eventually, that hope fades.

After going to get the ninth second opinion, your hope is beaten down. After the third surprise rectal exam, you need more than hope. And so your hope becomes steel. Steel that laces itself through your spine and your soul. It helps you stand up straight when you’ve gotten embarrassingly ill at a dinner party. It helps you keep your chin up when your latest doctor tells you that they found nothing new in the latest round of tests.

Last night I had an MRI. I was pretty annoyed going in. While I was sore and worn down, I wasn’t full on sick and therefore, getting imaging work done seemed like a waste of time and insurance money. The problem with scheduling imaging of just about any kind is that those procedures have to be set up usually at least a week in advance and my abdominal troubles have no interest in observing any sort of rational calendar. It’s like shooting at a target from on top of a moving train. It’s hard to get data, and this problem can’t be solved without data. It’s immensely frustrating.

So, last night I went to Weill Cornell Imaging and settled in for three disgusting rounds of contrast and half an hour in a giant magnet. And I got sick. I’m not sure if it was the contrast that distends your stomach or stress from pretty much anything, but by the time that they put me in for imaging I had already needed to take to pain killers and spent a while laying on the cool tile of the bathroom holding myself in the fetal position. It was the best thing that could ever possibly happened. I got sick right when I needed to be.

And now I have hope. And now I am terrified. Because what if the tests don’t show anything? What if this doctor gives up just like the last one? The last one was lucky and when I saw her the first time I hadn’t eaten anything in several days so she could go in immediately. She did a colonoscopy and found ulcers and though she had a diagnosis. But a year and a half later after blood tests proving her wrong, she threw in the towel. If this test shows something, will it be enough? I want to hope. I want to be better. But every time I get my hopes up, my spirit gets shattered when nothing comes of it. How many times can you get a punch to the gut like this before you give up? How do you find the balance between pursuing a cure that may never come and finding a way to live your life as it is so it doesn’t pass you by. I don’t know. Finding the answer so far has been terribly painful and I’m not sure I want to keep looking.

Sick Day

I have nothing new to say. The words I’m about to type have been typed by me and many before me. They’re not new, and I hate typing them.

I am tired of being sick.

I am not just tired of being sick, though. I am tired of being tired. I’m tired of being depressed. I’m tired of people not understanding my situation. I’m tired of not being able to explain my situation. I’m tired of not having answers. I’m tired of being told to be patient for answers. I’m tired of not talking about being sick because I’m worried that I talk about it too much. I’m just really tired.

It’s not going to magically get better anytime soon. I’ve been getting comfortable with the idea that I’ll always be sick and that this is just a part of me now. There is no Doctor House for me. This will not be over in a period of time that an episode of TV can cover. And yet, I must keep up hope, that there is some magical cure out there for me. I must at once accept my status quo and reject it. I must not talk about what I’m facing, because it’s big and dark and scary and sometimes really gross. But at the same time, I must be courageous and fight this battle and speak my mind.

I am tired.

I’m tired of this being such a big part of me.

80%

I’ve been struggling with a new symptom of whatever non-named autoimmune disorder I have: Immune-Mediated Cognitive Dysfunction. It’s a fancy way of saying I have brain fog.

For the last few months, I’ve been noticing that it’s harder for me to read and retain information. I’m more forgetful and sometimes I have difficulty saying words or even stringing sentences together. I need more sleep (9 to 10 hours) and I run out of energy faster. In short, my executive brain function is being put into “Power Saver” mode.

Just in case you are wondering, yes, it’s terrifying.

To be clear, it’s not that my reasoning abilities are gone, I just have less of them. I can still solve a task, it just might take me longer. I can still juggle multiple tasks, but I won’t finish them all as quickly or as cleanly as I once could. I am functioning anywhere from 80-85%.

This isn’t just something that sucks, it’s really difficult to get used to. My mind is still used to functioning at 100% capacity. I am not, nor ever have been a stupid person. And now, I’m not as smart. I’m not as quick. I’m not as bright. There’s not use saying, “Oh, that’s nonsense, you’re brilliant.” All the wishing in the world won’t make this untrue. I can’t stretch as far as I once could, and because of that, I’m still tripping up when I try.

So, please be patient with me. I know what I can handle – lots of trial and error in the last months have helped assure that I cannot miss the line in the sand. I know what I’ve got going on and what I need to do. Please don’t bring this up, or my illness in general, unless I bring it up with you first. I have to live it every day, it is therefore not my favorite topic of conversation. Please don’t question my judgement on how far I can push myself – I know. Sometimes I have good days, and I just want to have a good day and not be reminded of the many bad ones that I have. Please, be kind.

Retrospect

I feel a bit guilty about not writing more about 2014. There is a non-trivial part of me that feels I should have shared more about my adventures in the moment.

There is absolutely no arguing that 2014 was an EPIC year for me. It was my first year of marriage. I traveled the world, met more amazing people and lived in Japan. I admit that I’m a bit impressed that I was able to pull it all off. There were a number of times when I thought it was all going to fall apart.

As amazing as last year was, it was also hard. Impossibly hard. And impossibly hard to describe because it was impossibly hard to do. Hard in ways I couldn’t have even imagined before the fact. Hard physically – on average I got on a plane every four days. I only slept in my own bed for three or four months of the entire year. I have a chronic illness that requires  It was emotionally draining – when I was in Japan the only person I could really walk to was Will (who is great, but can’t and shouldn’t be my everything). When I wanted and needed to see friends and family I had to do so in giant tours that I was so exhausted by only a few stops in that I couldn’t really enjoy my time with them fully. I never felt like I really had a home. I couldn’t quite get comfortable in Japan – I was away too much and even if I had, I would have had to just given it up shortly anyways. And that would have been for the second time in two years.

2014 was amazing and utterly exhausting.

Talking about it while it was all happening, without some perspective would have been terrible and I’m glad I didn’t though I did take endless notes so I could later. And it’s starting to be later. It’s still too soon to talk about some things though there are things about last year that I could go on about for ages. For instance, the joys of the Japanese rail system. I’m not much of a train fan, but even I could see the beauty of that system’s precision.

Having an introduction to the blogging of my last year seems impossibly dramatic, even for me – but the truth is, I need to take this slowly. I need to process this with time – which is exactly what I couldn’t do last year.

International Incident

Well fuck. Looks like I’m not going to Eastercon after all.

For various reasons, my doctor has asked me not to travel internationally for the next six months or so. I admit, when my doctor brought this up, I laughed. I mean, after last year, now someone is going to ask me to sit still?

I’ve got lots of thoughts and feelings about this. One part of me says “Fuck the doctors, I’m too young to be ill!” another part says, “Don’t be a fucking moron, listen to your doctor!” One part says” After last year, I’m pretty sure international travel won’t kill me,” and another says “This is a really good excuse to hide in my couch forever.” The biggest part of me just thinks “Fuck, I’m going to miss my friends.”

While I’d like to shrug my doctor’s advice off, I’d be an idiot not to take her seriously. Guess I’m going to have to find alternate plans for Easter weekend.

A New Normal

You know what’s weird to lack? A daily routine.

Most people have some variant of get up, go to work, come home, sleep with a bunch of little personal details. What they eat for breakfast, if they eat breakfast, do they eat with a spouse or on the way to work and etc. That sort of thing. We have routines from a young age starting with school and moving to work of some sort. They say that it’s good to break a routine every once in a while and it’s true. Too much of a thing, even if it’s a good thing, can be a bad thing. Change is good.

But not having a routine is a strange thing. You grasp for one that might not be there in an attempt to right yourself because not having one feels a little bit like a ship tipping over. Life last year didn’t allow for much of a routine. Now, truth is, I did that to myself. Nobody forced me to get on all those planes and to live in airport lounges, but I would have been desperately lonely had I not. Pro-tip: don’t spend the first year of your marriage in a country where you can only speak to your husband. We made it, but I’m not entirely certain how we did. In the end, disrupting my routine to the point that my routine was chaos was worth it, but it wasn’t easy and now I’m trying to remember how to build one again.

I don’t have work to go to, I don’t have school to go to yet, but I can’t exactly spend the day in bed. So what do you do when you have nothing to do? Let me tell you that while there is a small urge to clean everything in the very beginning it is small enough that I don’t actually get to clean everything and eventually I just end up bored. Being bored is no fucking fun. Having nothing to do is crazy-making. Remember that the next time when you’re talking to someone who is unemployed.

Turns out that building your own routine isn’t easy. I have no reminders or guidelines, I have no structure outside of Will leaving and coming home from work. I have email that I need to get to, but surely I can get to it later, right? I’m a procrastinator by nature. You don’t make a procrastinator their own boss for a good reason. Except now I am.

Thank ghod for Japan’s obsession with stationary. You couldn’t turn a corner in the town we lived in without running into a stationary store that had incredibly adorable pre-printed To-Do Lists. I have travel themed lists, cat themed lists, penguin themed lists and even book themed lists. And those lists are how I get things done around here. I had to bribe myself at first. Every time I got something done, I allowed myself to open a piece of mail from a friend or one of the Cards Against Humanity Bullshit items. But now I don’t need the bribes. The simple act of crossing through the list and getting to flip another page is enough motivation. I push myself to get my To-Do list done as soon as I can.

The real trick for me was to know what was reasonable to put on the list. If I put a bunch of small items on the list, it can seem like my list is longer than the Wall of China. If I put too massive of a job on my list, it feels like a boulder that I’ll never be able to work through. Learning to break up your tasks into manageable chunks is something you quickly learn in the real working world, but I’m not sure if I’ll ever get back to that world. Working through a list consisting of ‘Write letter to Brigid’ and ‘Call doctor’ can be annoying sometimes. It feels like I shouldn’t need a list to do those things. But when you’re sick, little things add up and become big things. While I’d rather my routine be filled with big things, right now I’ll settle for getting something done at all.

Doctor, Doctor

Turns out I do not, in fact, have a bad case of loving you. I have a bad case of nobody knows what the fuck is up with my body.

On the bright side, there is in fact medical terminology for what’s up with my body: Isolated, Idiopathic Colonic Ischemia. Basically the blood stops flowing to a certain area of my colon and it starts to ulcerate and die. And then for some reason, it stops and puts it self back together again. I chose to believe that this is further evidence that I am in fact, a Time Lord.

The down side of this is that while my doctor knows what my body is doing, she doesn’t know why. And that is unfortunately what we need to know. While it’s good to know the name of what is happening to me, it’s the name of a symptom and not a treatable disease. My doctor has run out of options for tests for me that will show anything new. She threw the book at me and nothing took. This is heartbreaking and crazy-making but a little unsurprising. She’s come further than any other doctor. She was the first one to look at Crohn’s and autoimmunes. Hell, she was the first doctor to tell me that my pain was real and that I should be taking pain killers which she then gave me.

Today we talked about a surgical option. During a colonoscopy she’d mark the area in my colon that has the most problems and then a surgeon (at a later date) would cut that section of my colon out. Sounds fun right? You know what’s more fun? They’re not sure exactly what would happen if they did that. They hope it would be gone and never come back, but they have no hard numbers to give me. It’s just as likely that it would come back in some other place or stronger than it is now as it is that it would be completely fine. They have no sureties for me, they just have hope. And that’s cool, I like hope. But you know what I like more? Solid evidence before you cut into my body.

So I’m going to get a second opinion. And I don’t know what is scarier, the idea that it is my best option or that it isn’t. Hope becomes a dangerous thing when you’re sick. I’ve gotten used to being sick. I’ve changed my life. I’ve found a way to be happier with a simpler life that doesn’t involve me working heavily. I’d just decided to go to art school. So what do I do if this fixes everything and I can go back? I know playing What if.. is crazy making, but when you’re chronically ill, playing What if is your entire life.

I think it’s time for a drink.

Performance Anxiety

I want to spend the weekend in Boston. There is a convention there that I very much want to attend – Arisia. At Arisia will be a very high concentration of my friends from all over the US: California, Minnesota, Kansas, Illinois and of course, pretty much the entire Eastern seaboard. I’ve missed all of these friends deeply over the last year even though I’ve been able to catch some time with them and I’ve been looking forward to this convention for a while now. But the thing is, I really don’t want to go.

Getting to Arisia involves spending four-ish hours on a bus and right now, that is the second to very last things I want to do. The only thing I want to do less is getting on another fucking airplane. Twenty-fourteen was amazing for a number of reasons – one of them being the number of new and exciting places I traveled to – but it has me 99% burnt out on travel. The grass is always greener and last year the other side was a home I didn’t have. Now I have that home and even though I logically know that it will be here waiting for me when I get back from Boston, it makes my skin crawl to think about getting on that bus.

It’s been difficult to write about my issues with traveling. I don’t want to seem ungrateful and I know just how magical it all looked. The reality was much different. I desperately missed my friends and family. I was frequently ill and the stress of traveling only made things worse on my body. A simple trip ‘home’ was expensive, time-consuming – usually at least fourteen hours one way, and involved dealing with customs and immigration. Usually by the time I got ‘home’ I was exhausted and barely had energy to enjoy the time with the people I had traveled to see. It was beyond difficult.

It’s not Arisia’s fault that it is the year anniversary of all that starting. I’m sure that I’ll have a great time there. But that doesn’t make me feel much better about getting on that damn bus.

Limited Vocabulary

What does it mean when I say “I’m sick”?

I wish I knew how to explain what is wrong with me succinctly. I wish I had a diagnosis that could sum it all up and provide answers. I wish my pain and symptoms weren’t so embarrassing to explain to doctors over and over again.

I wish I could accurately describe how it feels to not be in control of your own body. I wish I could describe how disgusting it feels to be second in command of myself. I wish I knew how to say what it feels like to be in pain every day.”It really fucking sucks” just doesn’t seem to cover it. I don’t have the words to do that subject justice.

I wish I knew how to explain how hard it is to take pain killers daily. Not just physically, but mentally. To need something to fix you. If I had the words, I’d tell you just how easy it is to get addicted to pills because sometimes you just want to feel nothing.

I would tell you how hard it is to not be able to work. To not be able to do something you love. To have to reevaluate where your worth as a person comes from when you can’t support yourself. I’d have a lot of words on that.

I would tell you how boring being sick is. And how crazy that can make you. And how no, having more time doesn’t help when you are depressed, it just gives you more time to think about your failures. It gives you more time to wonder if all of this is your fault, or in your head.

There are so many things about being sick that I wish I could tell you. But I can’t. I just don’t have the words.

In Limbo

Will and I are home. Sort of.

We’re in Kansas City until Monday, then Chicago for New Year’s, and we finally move back into our permanent residence in New York City on January 5th, 2015. Even though we’re not quite done yet, it feels like I’ve been able to release half a breath I didn’t realize I was holding so tightly. Of course with Christmas Day festivities I felt out of breath all over again. I loved every minute of it. This holiday season is going to be and already has been a blast.

Though being back has been wonderful and we were ready for our adventures to be put to rest, I found myself dragging my feet about leaving. No doubt that some of it was due to the actual packing process. It shouldn’t surprise anyone to find that I procrastinated as much as humanly possible and was still in fact, putting things into suitcase when the packers came to deal with everything that we weren’t taking with us on the road. It took the company only four hours to pack up everything we had brought with us and accumulated over the year. I was grateful that it was someone else packing our stuff instead of me, but having eleven people in my apartment, touching my things, when I didn’t speak enough of their language to communicate was a deeply uncomfortable situation. Living in a country where I wasn’t able to talk and be understood was probably the hardest thing I’ve ever done. Our apartment had become my safe zone. I didn’t have to pidgin my way through conversation or emphatically gesture to be understood there. Even though it was my last day there, having that taken away, and in fact, having that be part of how we left was difficult. But, it had to be done. After they finished putting our things in boxes we went to our last dinner at my favorite yakiniku place (well, the only place I knew of…) a short train ride away. We made one last S’MORE in our awkwardly empty kitchen, shut off the breakers, and then I was in a car to a bus to a plane to Kansas City. Kansai, Honolulu, Los Angeles, Minneapolis, Kansas City. Seventeen thousand, eight hundred and eighty-seven miles down, one thousand four hundred and forty-six miles to go.

I’m finding myself relaxed in a way that I had forgotten that I could be. My trips home to see friends and family were always refreshing but they were always also exhausting. While shy about meeting new people, I find myself sliding into depression without a certain amount of socialization that couldn’t be had in Japan. Most people combat this by hanging out with friends, usually so do I, but last year hanging out had a slightly longer commute. With a bit of jet lag. And the gas prices were just a little steeper. Now that I’m back, I’ve already started planning dinner parties and outings with friends and it’s fun in ways that it never was before. I’ve always loved getting friends together but never been crazy about the logistics. Now the logistics feel like a piece of cake.

The downside to being ‘almost’ back is dealing with the fallout from the false feeling of home. I’m staying with my best friend so it’s just enough home for me to relax, but just enough off for me to feel like I have to re-find my place in life. I don’t, or maybe I do, but I’m not actually home yet so I don’t know.

My life in New York City will be more than a little different this time around. I’m moving back with the knowledge that we’ll be there for the foreseeable future. I’m going back to school and I’ll have time to pick up hobbies and meet more friends. It’s easy to meet new friends while seeing the world, but it’s not so easy to maintain that friendship by actually hang out with them when your life is going 100mph. For the first time since college, I’ll be living somewhere without knowing when I’ll be leaving. We have an 18 month lease, but unless we find our neighborhood unbearable, we’ll probably extend it. New York is going to be home for a good long while.

I can’t wait to be home.

Nothing ever stays the same.

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