Thoughts on my current health situation.

As you may or may not know, I have Crohn’s disease. This causes a lot of problems for my day-to-day activities and lifestyle, especially when the symptoms worsen like during a flare-up.

Now I can’t control what my body does as far as my Crohn’s goes and I can’t always control how it affects my life; that’s something that just is. I can, however, control my treatment and choose to make the best of the situations in which I find myself. That’s not always easy. Especially during and after extended periods of turbulence.

This past summer has been one of those extended times, and in a lot of ways it’s still happening. But I’m fighting to get out of it or at least take some control back.

An evolving treatment plan.

Because many of my symptoms worsened over the summer months, the decision was made to alter my treatment plan. Going forward I will be taking biologics on a regular schedule. This means that for the rest of my life, unless something changes, I’ll be injecting my medication every few weeks.

So that’s a pretty big change. Hopefully it’s one that will lead to a more stable state of health for me. That would be amazing and life-changing!

Wow. I reread that last sentence and it’s kind of… it’s a weird concept to wrap my head around.

In conclusion…

While I’m trying to manufacture hope and optimism, I’m going to probably start posting my thoughts on here a bit more. This blog is meant to share my adventures, and the biggest adventure of my life is also currently my only adventure. Well, it’s my only big adventure at least. I have been having little adventures as I am able.

I don’t know if there was a point to this post. I just started writing because I wanted to and I actually pushed myself to do it. Which was difficult. But it doesn’t have to be… does it?

Edit: I forgot to mention that I added support to my blog for dark mode. So if you’re on a supported device with dark mode turned on, my website will now match the colour of my soul a bit better. 😹

Am I being lazy?

Am I just being lazy?

Short answer: yes and no.

Well thanks, Matthew! That really clears it up. I don’t even know what you’re talking about and you’ve given me both possible answers as the tldr; answer. Yay!

Sometimes I feel like I’m just being lazy and using my Crohn’s, depression, or anxiety as a poor excuse to get away with it. Or maybe it’s more accurate to say that I feel like other people think that of me. Yanno? The reality is probably a mix of those two things or something else completely, who knows.

Whatever the case, it reminds me of imposter syndrome. I struggle with that a bit in certain areas of my life but I try to keep it at bay. I’m sure that a lot of people with chronic illnesses struggle with this issue. When you’re unable to do things for days, weeks, or even months on end you start to think that you’re choosing to be like this.

My body really can’t deal with much these days, but on certain days I’m able to push through and get more accomplished. It depends on what I’m doing, how I’m feeling, if I have support, and if I’ll have time to recover afterwards, but I am capable. I know that, and I think that’s what starts me thinking that I’m choosing to be lazy. And yes, I am choosing to take care of myself a lot. Sometimes I’m not doing the best thing for self care—staying in bed for extended periods without any movement isn’t always self-care even if it feels like it is. I mean it can be… but it depends.

A friend of mine wrote a bit about this before and it got me thinking about the issue, doing some research, and evaluating my behavior. Yes, I need to focus on my health first because without that, I cannot function at all. Like… at all. So it’s perfectly alright to be slacking on some things or missing out on events that I could attend but decide not to. That’s all okay. But when I’m spending time on self care, I need to make sure that, on top of relaxing and letting my body do what it needs to, I’m actually doing things for self care. Otherwise… yes, I’m kind of being lazy even though I’m actually not able to do things.

Anyway… this is something that I think about from time to time. I’m found some articles and blog posts that I want to read and reflect on since I started writing this post. Maybe I’ll get more insight and be able to speak more intelligently about it. Until then you have to put up with whatever nonsense I decide to post.

Beep beep boop!

I hope you’re enjoying the weekend, everyone!

Today was the best.

The past several weeks have been quite difficult for me, but with that difficulty have come some amazing and uplifting moments. Today I got a heaping dose of good energy, positivity, and new connections.

I stumbled upon an Instagram account earlier this summer for the Invisible Conditions Conference which was focusing on IBD. Today I got to attend that event and it was just amazing. I’m so very appreciative for the event and all the people that I got to meet there. It was amazing to connect with so many people that fully understood what I’m going through with my disease.

Itwas incredibly uplifting and just what I needed right now. The timing was great and I’m so thankful!

I got to have a deeper conversation with one of the organizers after the event wrapped up which was quite beneficial for my adapting to life in Vancouver. He was kind enough to listen to me and chat about various topics and ended up giving me some excellent advice that I’m going to follow up on.

You know, one of the most amazing things a person can do for another person is to just listen. That can be such a gift. This person did that for me today. I really appreciate it.

After that, I walked through the rain for a bit, which was kinda enjoyable, then went to work the closing shift at the coffee house with a co-worker I’d never worked with before. She and I got along swimmingly and we chatted away while cleaning up and stuff. It was a great end to the day.

Overall, I’m just incredibly blessed, thankful, and hopeful. Today was amazing.

I hope that you also had a great day! Whether you did or didn’t, tell me about it! I’d love to hear/read what you’re up to! 😄

Rewrite this, Matthew.

Like, for reals, okay?

Okay, okay… I’m writing an actual post now. Let’s do another update!

So yesterday (aka today, in terms of when this post was supposed to be written) I took transit down to New Westminster for a simple little medical test. The test was negative, which is good in this case!

However, because I’m taking medications that alter my immune system, they need to do a more extensive test on my blood to confirm the results. So they handed me another lab requisition for yet another test that I’ll have to get completed on Monday. AND the test has to be done either in their lab or the lab at the hospital across the street from that office which means I have to either drive 20-30 minutes or take a big transit trip again next week for a tiny little test. Fun stuff!

So that’s all well and good. I thought that I was done with medical testing until the first week of October, but one more lab isn’t bad.

*phone starts ringing as I walk back to the Sky Train*

“Hello, this is Dr. insert a rheumatology Doctor’s name’s office. I wanted to confirm your appointment for next Friday.”

*facepalm*

I had no clue about this appointment. This phone call was the first I’d heard about it! So I got all of the details from the person on the phone and created a new event on my calendar. YAY! But while I wrote the address on my phone I realised that this specialist will probably order a few more tests at this upcoming appointment.

All of this medical testing and the growing list of specialists is a good thing. It’s the main reason I came to Vancouver, so I’m not complaining at all. There’s just a lot happening all of a sudden and it’s a lot to take in and keep track of. Thankfully everything has been positive—or negative depending on the test—and things are looking very good for the continuing path of recovery and maintenance of my Crohn’s. Woot!

I’m getting scanned tomorrow!

And now the continuing adventures of…

My Life With Crohn’s!

Last month my doctor ordered a few tests and scans before we change my medications. Weirdly enough, most of those tests and scans were scheduled for this week. And lucky me because tomorrow I get to be scanned! Kinda like Spock scanning for life forms on planets and starships, except this scan isn’t in the 23rd century.

So I’m getting an MRI tomorrow morning and I’m super excited. So excited, in fact, that I marked it on my calendar and have decided to fast until after the MRI is complete! It’s like a holiday that I have to observe because of my weird Crohn’s religion or something, yanno? Fun times!

Anyway, I don’t know exactly what the procedure will entail until it happens, but I’d like to record some of what happens when I’m there. So I’m thinking that I’ll do a live show on Anchor as the day unfolds, that way everyone can hear what’s happening and I can talk through my anxiety. Hopefully that will be possible—we’ll have to see!

Wish me luck! I’ve had imaging like this before so I kinda know what to expect though not really.

Corn is everywhere.

My sister recommended this vegan restaurant called MeeT and tonight I got to eat there. It has amazing food! I had a dish called the “mucho something or other”… I don’t recall the actual name. I know it had something about mucho or macho, though. Itwas essentially a big fancy veggie burger; it was so good!

However, I soon discovered that there was corn in the veggie Patty. Something that I really, really need to avoid. Unfortunately, corn is everywhere and it’s in food that you don’t necessarily expect. So, even though I already knew this fact, and I usually do ask about corn in things like veggie patties, this is a good reminder that I have to be careful with food. Especially restaurant food.

I was thinking about talking about acceptance and regret, but it’s too late to think and write about serious topics like that. Maybe tomorrow.

Slow Progress

I just finished writing a long-ish post, but WordPress was stupid and didn’t back it up to the local cache, to the database, or anywhere else. LAMESAUCE!! However, let’s forgive and move on because this has to be done. I must write a new post every single day. Sleep is for the weak! But I am weak, so…😐

*exhales bigly*

It’s frustrating for me to still be here, working to rebuild my strength just to get out of bed every day. It feels like that’s been my sole task for the past three years. It’s like my life is on this little loop. Regain health, get hit with a Crohn’s flare, rebuild health, etc. I want to move forward to something new! Something that allows me the energy and freedom to be creative and get out of my safe space. I don’t want to spend my limited amount of energy on this repeating pattern. I have big ideas and no energy to realise them. I feel stuck!

I have been moving forward, though. I am making progress. It’s really slow at times and filled with difficulties (and pain), but it’s progress nonetheless. For example, I’m now in Vancouver, I have a GI specialist, and we’re working to adjust my meds. Actually, moving and getting a gastroenterologist is a big goal that I can now mark as complete! YAY!! 😁 And my flare is improving now, which means I am regaining energy to pursue more activities and feel normal.

So yes, I’m making progress! I’m happy about that. Now it’s time to continue moving forward, to keep sight of my goals and take everything one day at a time. I’ll get where I’m going eventually, even if I have to take time out to focus on my Crohn’s first.

My original post was better than what I just wrote. Oh well! It’s now time for bed.

Go, me, go! 🙃

Please don’t assume.

So tonight, I had a lovely evening with my mother and one of my brothers. We went to watch Wonder Woman at a theatre, which was kind of dangerous for myself.

See, I can’t eat food right now. At least, not whole food. I’m on a liquid only diet until further notice. On top of that, my Crohn’s puts popcorn squarely on the “absolute no-no” list, a list that doesn’t change depending on how my stomach is doing at any given moment. I simply cannot have corn in any form in any amount. It sucks.

The problem is that my family loves popcorn. A trip to the theatre without popcorn is not a trip to the theatre. I myself would eat a whole cubic foot of popcorn and still want more every single night. I know, it’s insane. But I’m trying to illustrate just how much I and my family love popcorn. And that’s a true story about the cubic foot thing.

Anyway. I was kind of hoping my family would either forgo the popcorn in support of my situation, or at least not make a big guys over it. They ended up getting popcorn, which I was fine with, and bought me some sorbet. It was lovely. That was all good, all fine. It happened and it was what I expected would happen and we were all happy.

Then, in the way home, they talked about hitting a McDonald’s for hamburgers. But then they were like, “no, we shouldn’t go there since Matthew can’t eat.”

…

They decided to avoid getting McDonald’s so I wouldn’t feel bad about not being able to eat…without asking me!

Annndddd they did that after eating popcorn in front of me, something that I love, then decided to avoid McDonald’s, something that I don’t like. It’s just like, come on guys! If you’re gonna “make sacrifices” by avoiding food for me, then apply it across the board, please. I know it’s popcorn, but you can eat it whenever you want and I can’t. If you’re so concerned about not making me feel bad, you can get popcorn when I’m not around, like you were planning to do with the burgers!

But you know what? That’s not my true complaint here, though it is a source of some frustration. There’s another point here that is really a big deal for me, and I believe that it’s a big deal for anyone who is sick or ill. I’m talking about assumptions. Yes, assumptions.

They can be well intended, and sometimes even helpful, but making an assumption can make a situation that I don’t have control over seem even worse because now someone else is taking more control away even though that isn’t their goal.

Allow me to back up a bit here. My family made the assumption that I wouldn’t want to be around other people eating food that I couldn’t eat, and that’s really nice and thoughtful that they realised that potential situation on my behalf. It’s really kind. But then they made a decision to avoid the food in a discussion out loud in front of me, but without my involvement.

The lesson here is that I would prefer to be asked or included in that decision making. I may or may not be fine being around others who can eat food! You don’t know until you ask. Sure, I had just expressed my sadness about not being able to eat, but that doesn’t mean I can’t be around others eating, especially if it’s McDonald’s. My feelings are situationally dependant!

If they wanted to eat, I’m fine with that. If it’s really a big deal that they don’t do that in front of me, then let’s come up with a plan together. I don’t want to stop them from eating, but I don’t want to feel left out. And I felt left out. There was no need for that.

The point of my telling you this isn’t to berate my family and complain about them and what happened. I explained my feelings to them and we laughed about the situation in the end, it was quite nice. I’m telling you this because I want more people to know that making decisions and assumptions on behalf of people who have a disease can feel quite bad for that person. They already have decisions made for them every day and live with frustrating situations they can’t change. Show you care by asking, listening, and learning how you can help. Include them in decisions. Don’t alienate them by dancing around a subject and trying not to hurt them. Just be direct and open. And if you don’t want to be insensitive, it’s okay to ask. In fact, it’s better to ask instead of either making an assumption or not talking about it and creating a taboo.

It’s never insensitive to ask, especially if you’re trying to be helpful and respectful.

I have to fight, even if I don’t want to.

🐰🐰

Crohn’s. It’s a pain in the butt. Well, more like pain in the everything.

As I’ve mentioned in the past, I’m a “Chronie”, meaning I have Crohn’s Disease. Right now, my body is doing everything it can to remind me of that fact every moment of the day. To some extent, I just have to accept that and carry on, which isn’t always easy. Sure, I’ve gotten used to constant pain to some degree, and maybe that isn’t a good thing. Maybe I don’t have to accept that all the time.

Other times, I have to shut down and just rest. Being sick and tired is exhausting, let me tell you. It’s a job in its own right.

Whatever the case, I don’t usually look sick, and that doesn’t help. I seem normal, and I try to be normal (to a certain extent), so how are people supposed to understand that I’m not completely alright? Yanno? It’s an invisible disease. Many diseases are invisible, actually. And people carrying those diseases want to be normal, want to be treated normally. At the same time, we want to be able to feel understood and accepted.

I think I’m getting off track here. My point is that over the past week, I’ve decided that I need to take more action. It’s been over two weeks of being sick on top of months of not feeling 100%. Enough is enough. The line must be drawn here, here and no further!

Now, I can’t directly change my condition and nobody else can either, unless they cut out my intestines. But I can influence my Crohn’s. Doesn’t always mean it’ll be effective, but there comes a point at which I need to fight back. It would be perfectly fine if I don’t as I am quite unwell, but I can’t deal with this anymore.

It’s gonna hurt more, and it’s gonna take boatloads of effort, energy, and support… but hopefully it’ll be worth it.

I am still waiting to get a GI specialist here in Vancouver, though the wait should be over soon! That will also make a big difference. In the meantime here are my three goals for this week.

Exercise! I need to do more intense and organized fitness routines. My mom’s a personal trainer, so I’m gonna ask her for help with this.
Eat more food! Being on a liquid diet isn’t fun or easy. I’m gonna experiment with food from my Crohn’s cookbooks to see if I can find dishes that fulfill my nutritional needs without hitting my stomach more than it already is.
Prioritize sleep! Sleep is important and beneficial when ill. That being said, sleep is illusive for me these days. I have built up several tools to help me sleep, but I haven’t been using them recently. There’s a good reason for that (sharing sleeping space with visiting family) but I need to use my tools.

This is quite ambitious and I know it’s not gonna be easy or an instant change. But I’m fired up, motivated, and willing to keep fighting. So let’s do this!

Note to self: Keep this desire alive! Remember your goals! Don’t allow yourself to play down the symptoms or the importance of your illness!

Have a fabulous day, friends!

I have a disease.

I was getting ready for to go sledding at the landslide, which meant that I had to first locate my ski pants. Every year around Christmas, our family has a sledding party with a bunch of friends. We’d grab our plastic sleds, our crazy carpets, and our single GT snow racer to have some fun in the snow.

This year, a wonderful Christmas in 2013, everything was as normal as ever. I couldn’t find my ski pants, everyone else was getting their snow stuff on, and I was still begging Dad to help locate my ski pants. Typical Matthew. Only, everything wasn’t quite normal. Sure, everything looked normal, but something was different and I was about to discover what that was.

Somehow I eventually found my ski pants, though my family was already geared up and headed out the door. I shouted that I’d catch up with them as I sat down on the floor to begin the intricate process of suiting up for the cold. And as I slid my legs into my ski pants, I felt a sudden pain in my stomach. A sharp pain that seemed to cut from the inside out, almost like someone or something was inside of my tummy using a knife to cut it’s way out. I curled up on the floor for a few minutes hoping the pain would pass. It didn’t. So I phoned my dad and asked him to come back and help me again.

Typical Matthew.

Dad returned and I told him what had happened. The pain had filled a little by this point, but it was still present. Dad said that it could be a hernia and that I should see a doctor after the Christmas break. I agreed and after asking if there was anything he could do, Dad went back to the landslide. I stayed home and waited for the pain to eventually pass.

The pain did pass, and I got to join my family and friends for the sledding party. But what I didn’t know at the time– what I couldn’t know at the time –was that eight months later I’d be hospitalised and diagnosed with a chronic condition known as “Crohn’s disease”.

What is that? Well, I’ll give you the short answer for now. Crohn’s is a type of inflammatory bowel disease that affects the body’s immune and digestive systems. It’s basically a malfunction of the autoimmune system that causes the body to attack the digestive tract. For me, that results in severe pain, inflammation of my bowels and joints, food intolerances, and extreme tiredness, among other various symptoms.

So that’s me. Rather, that’s part of me. I figured I’d start writing about my Crohn’s journey by telling you how it started for me.

Category: Crohn’s