Ah 2020, only 4 days in and you have already been so kind to me. Just before the new year began my bowels were doing all sorts of funny things and I thought to myself “Am I regressing? Is this the end?”. But no, it was just me not making healthy life choices, choosing foods that were known to be triggers and maybe pushing my limit there, and just totally not being anywhere near my usual routine. I keep thinking I can get away with not having a routine because “vacation mode“, but my body obviously thinks otherwise. Didn’t wake up at 7 am to take your medication? Now you can suffer with either constipation or feeling like you ALWAYS need to go even when you don’t. Didn’t eat breakfast before 9am or lunch before 1? Now feel bloated. Didn’t do as much physical activity during the day? Feel gasy all night b*tch oh, and maybe a little achey.
Sigh, my body thrives on routine. And I know this, but somehow it’s always a surprise when I end up feeling like shit. But these last few days I have been trying harder and I must say that I am feeling much better and back to “normal”. I am so sorry that I have forsaken you body. I will limit my brussel sprout intake until Easter.
But with a new year comes all the “new year, new me” “my new years resolutions are….” and I always think, welp maybe next year I’ll think of one. Because the truth is resolutions to me mean shit. They are like these loosely, non-legal binding contracts I make with myself, always break, and then end up feeling like crap later on. Of course I have goals I am working towards, but I always have goals. I am an A-type personality. If I don’t have goals and lists, I am lost. So if I don’t get to my goals right at the new year, that’s okay. I’ll get there eventually.
But even though I just spent a paragraph bashing resolutions and new years, I will say that one thing I like about a “fresh start” is that it is an opportunity to be more mindful and reflect on my year. I mean, life flies by so fast. If I don’t take a second to just appreciate everything I have gone through and all the choices I made to get to this very moment, I don’t think I would feel as happy as I do currently. I mean I fought tooth and nail somedays to get here and there were a lot of days that felt like such a low point of my journey, but I made it. I got through it and I am better for it. So I wanna take a moment to give myself a pat on the back and thank myself for making the choices I did. For believing that there was still a fighting chance and taking a risk that ended up changing my entire life.
This time last year I was staring at a packet of paper, signing my life away (over exaggeration, but you get the point) to a clinical trial. It was basically my final option before really considering surgery. I had two options of clinical trials to try from. My journey has been a long one even though it’s only been three years. And in that time I have developed such an important relationship with my doctor. After bouncing back and forth about concerns, pros, and cons, we both felt confident about one trial and decided to try it. My doctor especially felt confident, because it was the one he was a part of so he could answer a lot more questions about it and knew the risk factors to look for. So there I was, forced to stop Remicade due to possible complications, losing weight, my UC spreading again, and having to go back on the highest dose of prednisone. There I was, sitting in his office thinking “I hope this is my answer“, with my heart already half convinced I might just be putting off the inevitable.
But I was wrong. Thank god I was wrong. It was a little bit of a rough start. My progress was soooooo slow that I almost didn’t even make it to the second phase of the trial. Especially because I was still on prednisone. But we fought, presented my case, and I got to stay on it. And I kept getting better. Day by day, week by week, month by month. When June finally came around I was almost off prednisone and my body was basically doing it all on its own (with the help of the drug) and I was told to go ahead and book my Europe trip. I was getting more and more stable.
And now here we are. Not in diagnosed remission, but I am basically in clinical remission (little to no symptoms). In May I find out if I reached endoscopic remission, but I still see blood somedays so I still gotta work very hard between now and then.
But the point of my ramble is to be present. Be in the moment. Reflect. It is such an empowering experience and it reminds us even in some of our darkest hours that we have survived through some tough shit before. We have fought hell and back and got this far.
And as I like to say, I didn’t get this far, to just get this far.
Adios my lovelies and I will write soon!