When I started this blog, my eyes were wide open; I pictured writing about sunsets on the beach and breathtaking hikes with my man and my dog. The last few months I have seen some sunsets and been on some hikes. I see the instagram posts with the pretty girl and the pretty guy and they got a pretty dog too. I want this to be reality. My reality is that I have Ulcerative Colitis. A reality I have been living for 10 years. As we use the new year to reflect and plot our improvement, I am stuck getting back on my feet.
I have been battling through an Ulcerative Colitis flare up through the end of the year and new year. I wasn’t as responsible as I needed to be with my chronic illness. I found myself checked into a hospital in Stockbridge, Georgia, right out of Atlanta. It was our first show back for the year. I knew I was in trouble when I couldn’t sleep through the night due to the flare up, however I didn’t think it was four days in the hospital bad… I was wrong.
I have a difficult time sharing my UC (Ulcerative Colitis) story, because ultimately, it is embarrassing. It would be one thing if I told you I had Diabetes, everyone has a general idea of what that is. The explanation of the disease isn’t a depiction of what happens behind closed doors. Ulcerative Colitis is ulcers in the colon or large and small intestines. When I eat dairy, the ulcers flare up, secreting mucus and blood, causing fever and stomach cramps. I go to the bathroom quite often during a flare up, #2 style, and I lose the mucus and blood each time. I become anemic and very fatigued. During a flare up the most fun is the never knowing when I will have the urge to use the restroom and then needing to go immediately. (Didn’t I mention how awesome this was?)
I have met quite a few people who have Crohn’s Disease, which is similar to Ulcerative Colitis. The difference is, Crohn’s can affect anything having to do with digestion, the esophagus to rectum. UC only affects the colon. (And my social life.)
When I was eighteen the last thing I thought about is what I ate. When the symptoms first manifested, I thought it was food poisoning. Three months passed before my mom made me visit a doctor. It took awhile for the doctors to figure it out, but after a colonoscopy I was diagnosed with UC. That was the last day I had dairy on purpose, and according to everyone who I have told that I have a dairy allergy, that is also the day I died. “You can’t have cheese? I would die!”
And to be fair, a part of me has. The part of me who eats something without putting some thought into it. When I stop doing this, I get sick. I question everything now. There have even been times I was sure it was dairy free, and would still get sick. (It wasn’t lactose free, it had casein in it). The part of me who gets to go out to eat wherever I want, share the appetizer or sneak a dessert. (I know, boohoo, right?)
It doesn’t sound like the worst thing ever, and that’s because it isn’t. Or at least it hasn’t been in a while. The stomach cramps, a mild feeling, a constant uncomfortable thought of “ugh.” I have been fed up at times and think if I just stopped eating, I wouldn’t have anything to make me sick. I tried that once and my body still found blood and mucus to discharge. Not eating made those movements even more painful. A stabbing pain in my colon, the uncomfortable ache on my backside and a general unwell feeling. After completing the bathroom problem, the fatigue weighs on me. My shoulders sag, my arms feel heavy and my legs burn as if I ran a marathon.
When I am lucky enough to take steroids, my joints will also ache. I will get hot flashes as well as anger rages. (Yes, Roid Rage exists for taking steroids… I’m not on the anabolic kind though… shucks.) I’ll get really fed up with Sue walking close to me out of nowhere. Or if Eric asks too many questions trying to make things better, I’ll rage. (I mean he knows better… how dare he be helpful.) Plus the long term effects of taking steroids plagues me. My Mom’s Mom took steroids her whole life and it really messed with her mentally and physically.
Now I am tired just from writing this little bit. It depresses me quite a bit. It’s a circle. I mean I could have it so much worse, I really could. So to sit here and become depressed because it hurts when I poop seems so silly. But I don’t feel well. I should be thankful I still have all my limbs, I don’t live in a impoverished country or that I have such a great boyfriend/family/ friends who cares about me. All that falls away when I stress over the next bathroom visit. It will be painful. There will be blood. I will feel exhausted afterwards.
And yet, I feel like such an asshole for not having it worse.
Travel starts again this week, a poem for steroids and more life continues on the next post. Keep Wandering. <3afk