There are 11 days til Christmas, folks. In case you lost your calendar or something and needed me to remind you. You’re welcome.
And while usually I’d be writing a post gushing over how wonderful Christmas is (it still is) and how much stuff I have to do (because I do have a lot of stuff), I’m going to talk about something else entirely. Something which makes me uncomfortable both physically and emotionally. Something people don’t talk much about because it has to do with bodily functions and really, who wants to talk about that?
As some of you know, I have ulcerative colitis. What is it? Well, to be brief, it’s when the lining of the colon is inflamed and ulcerated. This leads to bathroom trouble, in other words, along with exhaustion (imagine how you feel during a stomach bug – now imagine that for days and days), and in some cases fever and vomiting. Flare ups aren’t constant – most of the time I feel fine – but when they happen all bets are off.
I was hospitalized in early October because of a really bad, sicker-than-I’ve-ever-been-in-my-life flare up, then again a week later due to something I probably picked up when I was in the hospital the first time. It was the least fun ever. And here I am, two months later, not nearly as sick as I was then but not so great, either.
Why am I telling you about this right now? Well, because I feel like I need to get it off my chest somewhere and I don’t go to therapy so here I am.
I’m going through a flare up right now. It started last weekend. I generally only feel sick in the morning, til early afternoon at the absolute latest. When I get out of bed I feel fine. It’s only, say, after I take a shower or get moving in some other way that the problems start.
Did I mention that I have an almost 2 hour commute? So the pattern that’s emerging is: Get out of bed as early as possible in the vain hopes of getting everything out of the way prior to leaving the house, go to the bathroom at train station1, take train 1 (pray the entire time), go to bathroom at train station 2, take train 2 (pray even harder), walk 1/2 mile to work while praying some more and repeating positive sayings to myself so I don’t have an accident. Rush straight to bathroom as soon as I walk in.
Can you imagine how awful that is, day after day? It’s terrible. It hurts. It’s scary. It’s embarrassing. It’s demoralizing. It’s depressing.
But today was the worst. I burst into tears in the car because I was hurting and angry over it. Not only did I miss train 2 because of my bathroom escapades, I had to get off at the first stop on the train I did catch, more out of fear than anything else (the cramping was really ramping up and I was terrified). I had the treat of seeing homeless people wash themselves in both train bathrooms this morning. Of course I know I could take that as a reminder that life could be worse, but…not right now.
So I took a cab the rest of the way in. There’s $25 down the drain. And even then I had a couple of tense moments, but I made it to work safe and sound.
This is a very lonely feeling. People are sympathetic, my supervisor is understanding (her father has Crohn’s so she knows how bad stuff like this can be), Rob is of course a sweetheart as always. But unless you’re going through it, you don’t know how it feels inside. Pain and discomfort aside, it’s the knowledge that you can’t trust your body that really sucks. It’s standing on a crowded train platform and feeling that first cramp and begging God to just let you get through this ride and to work without incident. It’s feeling a pain while in the car and panicking, even when you know you shouldn’t, your eyes searching your surroundings for someplace with a bathroom.
It’s crying as I type these words because I honestly don’t think my life has even been so strongly affected by this. It’s such a shameful place to be in, though I know I shouldn’t feel shame because I can’t help what’s happening. It’s not my fault. But still the shame is there because, let’s face it, this isn’t a pretty situation.
It’s being scared to death that this is never going to stop and I’ll end up with cancer, or having my colon removed. It’s praying and praying that I find a way to get this under control soon.
Yes, I’m on medication, namely Asacol. I’m sure there’s other things I can do and take and I plan to explore those options.
No, I can’t see a GI right away – in fact it doesn’t look like I’ll be able to get in til the new year. So I’ve been seeing my regular doctor and will be back in his office on Monday. It’s a while to wait but what can I do? It’s better than waiting til after the holidays.
It’s all about day to day right now. And trying to meditate and stay calm when issues arise. And asking God what I did to deserve this.