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.
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.
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.