The Waiting Game

I had a pretty good day today. I had a high amount of energy up until about 7 this evening when I was having to deal with people at the pharmacy after my doctor’s appointment. There was a lady who tried selling me a hair curler when my hair is practically as curly as Shirley Temple’s. When I explained that my unkempt mane is all natural, things got kinda awkward, so I just shuffled off to the pharmacy after mumbling something about not having the money for it anyways. Also while I was waiting, this one man kept pestering me about my place in line when I kept telling him that my prescription wasn’t even ready yet. I just wanted to be left alone with my phone and free Sam’s Club wifi.

My doctor’s appointment consisted mostly of waiting. In the actual waiting room, I was the youngest one there by a landslide. A few people kept staring at me like they were confused as to why I was there. It was super annoying. Then I got weighed… A bit more weight that I’d like to have, but I guess I’ll deal with that later. Prednisone is an absolute menace. As I was waiting in one of the offices, I attempted to make some sort of song by flipping my flip flops with my feet while playing Flappy Bird. Flip flop flap. I’m lucky I’m so easily entertained.

My doctor’s pleased with my results, though. I mentioned the bloating and joint pain I had last week, but also how it’s died down significantly. He set me up on a more detailed Prednisone taper for the next couple weeks to get completely off of it. I’ll be ecstatic when I’m finally done with it completely. I have another appointment with him in two weeks and that’s when we’re going to set up my next Remicade infusion.

It’s weird thinking that every 6 weeks, this is going to be my new normal. I really hope it keeps working, because I shudder to think of what could be next. I think it’ll be several years before my doctor suggests removing part (or even all) or my large intestine, but he did mention that my condition had worsened significantly since last time. He even said I technically have ulcerative pancolitis now, meaning that it’s my entire large intestine that’s affected instead of parts of it like it was when I was first diagnosed. I’ve heard of something called Humira and how you have to give yourself shots with something that kinda looks like an EPI pen. I definitely ain’t about that life. I’m not going to worry about these things until things start getting worse, though. 

At this point, all I can really do now is wait. Wait to get better or get worse.

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