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.
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.
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.
Today started my last week in Japan. A week from yesterday I will board a US bound plane for the last time this year. I don’t know when I’ll come back here, though I know that I will. I know that I’ll miss this place. There is a more than small part of me that doesn’t want to leave. It’s the part of me that has come to know this place as home.
I’ve refrained from writing about my time here for a number of reasons but the biggest being that I knew I couldn’t do justice to my experiences without the perspective only gained from time. Big adventures look awesome in hindsight. In the thick of things there is lots of angst, frustrations and pain. It would have been far too easy for me to fill posts with all of the hard stuff and forget to share the good stuff.
one of the hardest things has been my health. It’s no secret that I have a mystery chronic illness (to be clear, it’s a mystery to my doctor and me, too), but I haven’t done much to explain what that actually *means.* It’s a huge part of my life – something that I deal with almost every day. Life here has certainly complicated and exacerbated things, and it’s something that I probably should have been sharing about. Figuring out what exactly to share is the tricky part. I want to loop people in, but not gross them out. I’m working on finding that line. As much as I’d like to pretend that my health problems are minor annoyances that are an infrequent issue, they aren’t. I feel that I owe it to myself and my loved ones to be clear about what I’m dealing with. My medical stuff takes up a lot of spoons, and keeping it close to the chest takes up a few more. Time to change that.
While I’d love for this last week to be no work and all play, our apartment isn’t going to pack itself. Our movers will take care of most things but I still have to sort where our daily personal items are going, (with us for the holidays, dropped off by Will in NYC, plane shipment or sea shipment) do a crap ton of laundry and make a list of absolutely everything we own for insurance purposes. Prepare yourself for lots of before and after pictures and plenty of moving-related complaints. Moving sucks no matter what.
I wish I could find the pause button for life.
I am so tired. I am exhausted and frustrated and I just woke up.
I have spent the last week dealing with a mystery illness that causes extreme abdominal pain, dizziness and forced bodily functions that nobody wants to have to deal with. Ever.
I have seen three doctors this week, been to the ER, Urgent Care and a HMO office. I’ve gotten a CT, sonogram (owwwwwwwww with a tender tummy) and three variations of X-Rays which included drinking an annoying amount of really disgusting barium. I’ve had so much blood taken for tests that all of the veins in my hands have collapsed and it was a joke trying to get access to the ones in the crook of my arm. I was in so much pain and so exhausted that I only went in to work on Thursday and even then had to leave early. Not such a great thing as an intern, my bosses are sympathetic but that is only going to last for so long.
I am so tired of this.
I’ve been dealing with ‘episodes’ of this mystery ailment since middle school. However, those episodes were few and far between and always happened at night. Not so much on the fun side, but at least I could deal with it in the privacy of my own home with family helping out and taking care of me.
Over the years, the meds that I’ve been taking for this have stopped working. Episodes used to be solved with a few Advil/Aleve/Whatever I could grab out of the medicine cabinet faster and a hot water bottle. That stopped working and so I moved on to drugs from the UK that a friend of mine recommended and that he brought me. That stopped helping earlier this year. I’ve tried pain killers and non-traditional medicine and while those help a lot, there is only so long that I can go around being drugged out of my mind. There is no warning before these episodes, one second I am fine and walking around, the next, on the floor wishing for unconsciousness.
The episodes this week have been fast and furious and have left me completely spent. I don’t know how long this is going to last, or if they will ever figure out what is going on and be able to ‘fix’ it.
I am so completely exhausted.