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’m back in NYC for a few days before I head back on the road and I feel very odd about being here.
I’m staying with my in-laws, and while I love spending time with them, it’s very odd to not be heading back to my old place after dinner with them. It’s not like I haven’t stayed at their place before while living in NYC, but for this to be my home base…it’s just a little off.
I’ve been having late second thoughts about all my traveling. It’s so much fun, but it’s so damn exhausting. I’m running pretty ragged after my fabulous weekend in Chicago and I’m wondering/worrying if I should try and keep this schedule up, but if I don’t what will I do with my time? Keeping busy and moving around helps me avoid the fact that Will is living on a continent that I’ve never even been to. If I stop, I will find a squishy bed to hole up in and not get out of it until Will gets back. This is pathetic. I know it is. But it’s also the truth.
Jesus, it’s a good thing that I left the half case of Thin Mints in Chicago.
Being sick is humbling. Being sick is exhausting. Being sick is boring.
I’ve been sick for three weeks now and it’s driving me up a wall. The doctors have no idea what is wrong with me and so I spend my time either in pain, hopped up on painkillers or waiting to be in pain again. Every once in a while, I’ll go just long enough without an episode (six or seven hours) and I’ll start to hope that what whatever this is has passed on for good. But it always comes back. It’s like whatever this is enjoys taunting me with the idea of freedom.
I’ve said it elsewhere, so I don’t think it’ll be a shock to anyone who reads this, but I’ve taken a leave of absence from work. Whatever this is, has no respect for deadlines. And even when I’m not in pain, I’m usual loopy as all get out. It’s incredibly boring and demoralizing. I love working, and now not being able to? The first half-day was nice. Just catching up on sleep and etc, but I quickly run out of things to do. Though I have half a dozen craft projects around the house that Will is allowing me to leave out so when I want to work on them, I can. It’s hard to take on work when you don’t know for sure when you’ll be able to work on something. Thankfully my bosses are amazing and have told me that when I’m ready and well – and _only_ when I’m well – they’ll have some non-deadline work to do at home. I’m so lucky to have them.
Going to see doctors day in and day out is difficult. Especially since most of them end up saying flat out “We have no idea what is wrong with you.” The new GI specialist I say this week suggested a new drug this week and it was disastrous. I was on the floor in pain for three straight hours. You know what is worse than the doctors not knowing? Doctors making it worse. It’s not that I’m mad at them. I know they are doing the best that they can with this mystery, but it’s still hard to deal with.
I think the worst part of all of this is how lonely and guilt making being sick is. If I didn’t have friends online that I could talk to every day, I would probably lose my mind. Will is great for conversations, but he’s away the majority of the day and the cat is super great at cuddles, but that’s about it. I miss the people from my office. I miss being in the middle of a crowd. I just miss interacting with people. Will and I went for a walk last night down to the edge of the island which is my favorite place. It’s got a great view of Brooklyn and the Brooklyn Bridge and I just love it. There are a few photos from the area that I’ve posted online. It was fantastic to get out and see the beautiful view and get fresh air, but by the end of the walk, I felt guilty. I’m sick. Shouldn’t I be at home in bed not enjoying life? If I’m well enough to go on a walk to see this beautiful thing, should I be well enough to go to work? It’s a hard thing to grapple with. I’m going to see if I can go to some museums in the area that I’ve never made it to before. Things I always said “Oh I’ll do it next time I’m here visiting Will” know that I’d be just as greedy about time with him the next time around. I can go see those right now and Will thinks I should. I may be loopy, but when has that ever stopped someone from enjoying art? Hell, sometimes it helps them understand it better.
This is my life right now, and I have to say, I’m not a big fan.
I had a CT scan scheduled for this morning. I figured I’d show up on time, lay down inside a giant magnet, get up, and get on with my day.
Not so much.
My schedule has now been pushed back by several hours and the contrast they gave me is making me feel a little bit more like death every minute. What a glorious start to the day.