Can you believe it’s already been a year? Because I can’t. And let’s get specific here. It’s been a year today that I first noticed there was something off with my body, so technically the first day my body decided to show me that we were sick.
I know most people are thinking “why wouldn’t you use the anniversary date of when you officially got diagnosed?”
Well, because that didn’t come until January. So that was 3 months that I was fighting with my body and no one seemed to know what was wrong with me. 3 months of technically having ulcerative colitis, but no one knew what it was and brushed it off. And wanna know the super sad part? 3 months is actually a short period between first showing symptoms of being sick and actually getting diagnosed. I was considered one of the lucky ones because there are people who go years before they get diagnosed. Years!
But here we are, one year later.
It’s a bitter sweet feeling. I am a firm believer in taking power and control over the things that I can. This morning I woke up and felt like crap (late night last night from my best friend’s birthday) and then realized what day it was today and just felt more crappy. I sometimes wonder if my colon has it’s own mind and knew what today was and decided to be just a bitch and make today a little bit harder than it needed to be just because it could. I swear, it knows things and knows that when I need it to be nice and gentle to me, it decides to do the exact opposite of this.
Anyways, I wanted to cave and just dwell on this feeling, but instead I decided to go buy cupcakes, sat on my bed, lit up a candle, had a mini photoshoot by myself with this damn cupcake, and then happily ate this cupcake. I celebrate with food for every other monumental moment in my life. My best friend bought me an ice cream cake when I got into my masters program, I always go out and eat for my birthday and anniversaries with my boyfriend. So why not this too? I mean it’s not something I am thrilled to be celebrating, but it’s now a part of who I am, it is monumental, and it is a lifetime commitment.
Did anyone else celebrate their one year mark? It feels a little empowering and kind of cheered me up. And it also really made me reflect on the year.
It’s been a fucking roller coaster, let me tell you.
I started out a year ago waking up and going to the washroom noticing blood and a lot of mucus. I literally chalked it up to too much rum and cokes from my best friend’s birthday celebration because I ALWAYS get the rum shits. Does that stop me from drinking it? Nope.
I remember I went to the washroom quite frequently and again always blood and mucus but I didn’t think a lot of it. I texted my friend and she’s a nurse so naturally her advice was give it a day or two, if it doesn’t go away see a doctor. But I felt fine otherwise, so I brushed it off.
I think it wasn’t until this had been going on everyday for 2 weeks straight that I finally caved and went to a walk in clinic. Most of you know the rest of the story. Got pushed around from doctor to doctor, test to test, only to always be told everything comes back normal so I must be okay and we will just have to wait to get a colonoscopy.
I remember during those times just feeling annoyed. Annoyed with my body, annoyed with the doctors and these tests because it had to be happening for a reason, and even annoyed with my support system because I didn’t see the urgency to do anything because for the most part I felt fine. I was just pooping a lot and pooping blood every time. I wasn’t dying!
But I now reflect and I am so grateful. I am grateful I had people to push me when I refused to push, to remind me this wasn’t normal and to stay on my ass about things regardless of how stubborn I was. I am also oddly grateful for the experience I had with my doctors, even though most of them weren’t positive. I’ve learnt now how important it is to just trust people and believe what they say regardless of test results. I’ve learned that communication, non-verbal and verbal, can hugely impact how people view their own ailments. I never tried to take things more seriously because every one was so passive and nonchalant about things, so if they weren’t worried why should I be? Even when ulcerative colitis was first brought up as a possibility, it was said so casually that I didn’t think it was all of this. I thought maybe it was like a virus and you could pop some pills and be on your merry way. And this lesson is huge for me because it will impact how I will practice as a psychologist with my own clients.
I’ve done a lot of changing this past year as well, a lot of it unwanted. I didn’t want to change my life style, change my eating habits, change my habits in general, or change my ways of thinking. This caused me to often probably be in more pain than I needed to and definitely triggered my downwards spiral into depression. I wanted to be “me” but that me and this me are not the same. I was very optimistic back then and had the patience of an angel. Now I’m a bit more realistic about things (maybe borderline a bit pessimistic) and find I don’t have the same patience. People come to me dwelling about how their world is ending because of this one little thing and I think “Jesus, it’s only temporary. You’ll be fine, it’s really not the end of the world.” Of course I don’t actually say this, but I do find I now organize problems into short term and long term a lot more now. Will this impact me in a day or two? No? Well then there’s no use stressing over it because I literally have bigger things to stress about.
That’s not to say I won’t listen to problems. I love being there for people and will always lend a helping hand or ear when I can. I guess I’m just a little more blunt in addressing people’s ways of thinking, which can be useful but also sometimes back fire.
I’ve changed physically a lot too. Moonface, lost weight, gained weight, lost hair, and somewhat got it back only to be losing it again now (I literally screamed with joy when I saw little wispies of baby hairs coming in). I am essentially an 80 year old trapped in a 23 year old’s body between the joint pains and just being winded so easily. I worked up a sweat yesterday playing DDR and had to actually sit down and contemplate either puking or using my inhaler because I was so tired. And I used to kill at the game! And I’m always tired. I have very little motivation and energy for things, so I had to quickly learn how to prioritize better, which I hated because I’m the girl who does it all (usually winging it) and will get it all done somehow. Now I actually have to plan things in advance! Who does that? Probably, a lot of people, but the point was I did not. I liked flying by the seat of my pants and just doing it all.
I’ve also gone through a hell of a lot of drugs and money on drugs this past year. I’ve gone through every class of treatment type you can take for this disease, so if you have questions I can probably answer it. My least favourite will always be the enemas, because you really never knew if it was going in or coming out and it was always such a panic. I did finally get approved for non-group coverage for Entyvio, but not until Feb 2018 so until then I am considered compassionate yet again, meaning the drug company will pay for me.
I still did a lot of travelling. A part of me regrets it and another part of me doesn’t. I always wonder if maybe I slowed down a bit, would that have allowed my body to heal better? But then I look back at what I was able to do and it helps keep me sane and reminds me that one day I can still do that, especially when I’m crashing or going through a depression spell. I will literally just flip through my phone and reminisce on all my adventures, the good and the bad. They were experiences that definitely reminded me that I can’t do it all and that I do need to slow down a bit even when I feel okay. But they were experiences and that to me is important.
I have also had the chance to meet and connect with so many beautiful and inspiring people. I mean, I kinda wish there was a happier reason we could be talking and meeting. Generally, there is usually better ways to meet people. But hey, at least we connected! All of you are so bad ass and inspire me. You have helped pushed me to stay positive through your own stories and our interactions. You have given me words of wisdom and courage during some of my hardest times. You’ve also reminded me that I am not alone and with any invisible illness it can be so isolating and a lonely feeling. Because you do constantly feel like no one understands you because you don’t look that sick. But you all believed me right away. You extended your hearts and empathy and that means the world to me.
It has brought me closer to certain people and my family and has even managed to oddly bring my family closer to one another, which is really sweet to see. It makes my heart swell seeing my family interact more positively and being so supportive. It’s forced them to learn how to communicate better and just be supportive more towards one another. On the other side, it has pushed some people out of my life as well, which is okay. I get it. It’s not something everyone want’s to deal with and really they don’t have to deal with it, I do.
It’s been a hell of a year. I am sad to know that a year ago I was physically stronger. I was a different person. I had different dreams and hopes for my future and those had to be adjusted a bit. Currently I am still on Prednisone, past the halfway mark and getting my ass kicked. Joint pains, fatigue, brain fog, increase in urgency, bloating, gas, mucus, a little bit of blood, gradual decrease in appetite, hair loss, I feel the depression creeping in again, and anxiety is definitely creeping in-it’s all coming back! But it’s easier than my first round, so I will take what I can get.
I’m still on colon cancer “watch”, so my gut and I are still not friends. But we are optimistic that this is working. It’s a slow process though so I am interested to see where I will be at during my 1 year anniversary for getting diagnosed. I definitely thought I would be in remission by now, but my body wanted to do the exact opposite of that. Maybe by then we will be a little closer? Or who knows, maybe I’ll be sans colon! Still not entirely sure how I feel about that.
But here we are folks. One year later and still fighting (mostly) strong. Here’s to not being able to kick my own butt (thank god) and still putting up a good fight. Here is to many new chapters, life lessons, and adventures that I’m sure my body will put me through. I’m really hoping we continue with this good streak and stay away from hospitals. At least give me that much body.
But thank you to everyone who has been following me through my journey and who has supported me through it all, regardless of how big or small you played a role. It’s been tough, but it’s always easier when you have the support system I have been lucky to have.
I love you all!