October has not been my month yet. Well, maybe that’s not such a fair statement. It was the end of September that really got me. If you’ve hung around here very often, you know of my 3-year struggle with ulcerative colitis, a particularly nasty chronic irritable bowel disorder. If posting has seemed spartan here as of late, it’s probably because I haven’t had much to chat about other than that, and who really comes here to hear about poop? Not exactly the best topic for blogging, eh? Can you imagine the photos I’d put on that post! Yikes!
Because of my UC, I receive an infusion of a drug called Remicade every 4 weeks. It works to control my symptoms of UC, but at the expense of my immune system. So when I got drug down with a cold in September, it really waylaid me, and eventually spiraled down into a deep bronchitis. Which means I have to take an antibiotic — and that’s not good for people with bleeding or colon issues. So on top of bronchitis was another UC flare, and then before I knew it, I was pretty sick and pretty anemic. My energy level was sapped – I could barely get out of bed and would’ve been happy to sleep all day. Not too exciting or fun.
Anyway, I’m better now – I was able to get back to the Remicade, but on the flip side, my doctor had to put me on steroids to stop the bleeding and flare up of UC. Which sucks. Because steroids suck and I hate them and I hate how crazy/nutty I feel on them, not to mention really puffy and bloated. This time last year, I had been on a long dose of steroids and was mega bloated and 20 pounds heavier than I have ever been (especially sucky since I had lost all the baby weight). A year later now, I’ve lost almost all the weight and I’m only 5 pounds away from my pre-baby weight so I am really working hard to not wig out and eat everything in sight while I’m on the prednisone right now.
Which leads me to my next news. In two weeks, we’re going to go to the Mayo Clinic in Rochester, Minnesota. The Rochester Mayo Clinic is #1 in the nation for gastroenterology. They see 2000 IBD patients a year, and I’m going to be one of them. I’m hopeful that they’ll have fresh insight into my disease so I can stop the vicious cycle and be off of prednisone for more than the blink of an eyelid. I really don’t know what to expect, but I figure it doesn’t hurt to go see them. So I’m going in style – I’m picking out some winter boots and getting geared up for some cold weather! I’m going to view it as a fantastic adventure and let this help to purport good health in my life. I have no idea what to expect, but I know that God is in control and that He has a good plan. Mom and Dad and Simon are going too; Big Red will stay behind with his cousins (I don’t think he’ll mind too much).
We’ll be gone the week of Jude’s birthday (my first appt is on Oct 27), which breaks my heart just a tiny bit. I’m hopeful that we’ll at least be home in time for Halloween so I can take my little gnome trick or treating. At the least, we’re going to have his birthday party the weekend before we leave (a combined party, with one of the cousins) and it’ll be a costume party. I bought a silly wig and a clown nose and a brightly colored tutu and I’m going to be a cute little clown. Simon is still undecided, but he’s never one to back down from a costume challenge. 🙂 So I really have that to look forward to, and it’s important to me that we at least get to have this.
I feel a little stagnant lately – I’m in need of inspiration or something. Everything feels a little blah right now, what with Simon still unemployed and me feeling under the weather. I haven’t felt up to decorating a lot around the house, which kinda makes me sad because I adore October. I want to go crazy with pumpkins and glitter and I just haven’t been able to yet. I try to push myself to keep going because more than anything, I do not want to be defined by a silly disease. I don’t want to be controlled by it nor do I want it to sap me of the things that I love doing or being around those that I enjoy.
Well, thanks for sticking around and reading. It feels good to get things off my chest. I’ve got a funny post coming up later this week, inspired by Elements of Style’s college dorm room post. Check back for that one on Tuesday!
I love you all, each and every reader. You have no idea how important it is to me to have this outlet and I enjoy getting to hear back from everyone! 🙂
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