Amy’s Journey

Amy’s Journey A space to share my journey, health updates, and life behind the scenes ♥️

09/11/2026

Hey everyone! Just a little answered-prayer update. 🙏🏻

After just sharing yesterday that my GI appointment had been unexpectedly cancelled, I opened up MyChart today and was so happy to see that I have now been booked with the new GI doctor through the new referral for November 3rd!

That is honestly much sooner than I anticipated and such encouraging news. It gives us some time to hopefully come up with a better plan before shoulder surgery, whether that ends up happening in December or stays scheduled for February 1st, 2027.

Thank you so much to everyone who has been praying for this. ♥️

09/10/2026

I don’t think I’ll ever truly be used to this. I wasn’t given an option — I just learned how to adapt, keep going, and survive it.

I’m genuinely doing the best I can with the cards I was dealt. And yes, I’m surviving it — but it has changed me. Some things have made me stronger, while others have left me more tired, more guarded, and more easily triggered than I used to be.

Just because I’ve been through something before doesn’t mean it stops being scary, exhausting, frustrating, or difficult. Sometimes the repetition actually makes it harder. The burnout builds, and certain experiences can become more difficult to cope with over time.

I’m not used to it. I’ve just gotten better at surviving it. ♥️

09/09/2026

Hey everybody — a brief, slightly frustrating update.

I’ve been waiting about four and a half months to see a new GI doctor at McMaster after the gastroenterologist I’ve had since I was a teenager moved to Toronto and could no longer follow me as a patient. My appointment had finally been scheduled for September 8th (today).

Last Friday, my previous GI doctor actually called me personally and let me know that the other GI doctor had canceled my appointment. My understanding is that, with the appointment coming up, she likely realized that my case falls pretty far outside of her area of expertise. Her focus is primarily inflammatory bowel disease, and she also does not have any experience managing patients with feeding tubes.

Obviously, this was incredibly frustrating after waiting so long and preparing so much for the appointment. The good news is that my previous GI doctor has been wonderful and is now referring me to another colleague at McMaster who specifically works with complex GI patients, feeding tubes, enteral nutrition, and the TPN clinic — which is a much better fit.

I’m just praying the referral can be expedited since so much time has already been lost. I’m really hoping to get established with him before my upcoming shoulder surgery (pending December-February) so we can continue working on optimizing my nutrition.

In the meantime, I’m still working incredibly hard with my dietitian and have made a lot of progress with my feeds. I still have a long way to go, but slow and steady wins the race, right?

I’m very proud of the progress I’ve made over the course of the past few months. ♥️

09/05/2026

This is a very vulnerable post for me to share, but I want to be completely transparent.

Medication changes are genuinely one of the hardest things for me. I haven’t been sleeping well for quite a few weeks now, and at this point I am desperate for some proper sleep. I’ve continued waking up throughout the night in pain, so when the palliative team came to see me, we made the decision to increase my methadone by a very, very small amount at bedtime.

I don’t deal well with change in general, but when it comes to medication, my anxiety is on another level. Even when I know something may help me and that there is a reason I need it, my brain immediately starts worrying about how it’s going to make me feel, what side effects I might have, whether something could go wrong, or even whether I’m going to stop breathing in my sleep.

This is something I’ve struggled with for a very long time. Although I’ve come a long way with my medication anxiety, it’s still something that can be incredibly difficult for me to work through in my own head. I can rationally know that I’m okay and that this is something being done to help me, while the anxious part of my brain is telling me something completely different.

Increasing this medication is one of those things I know I need to do for better pain control, hopefully better sleep, and better control over the nerve pain that has gotten so bad that even my bedsheets can be painful against my skin — while simultaneously being terrified to do it.

But I’m still doing the hard thing. I’m taking the medication, working through the fear, and reminding myself why I’m doing it. That doesn’t mean it’s easy.

Medication anxiety is very real, and it’s definitely something I haven’t talked about much before. I think sometimes people see the medications I take and assume I’m completely comfortable with all of it, when in reality, even a very small change can feel like a really big deal to me.

Here’s to hoping that this medication increase is going to help overtime and I’m going to get some much needed relief from pain and better sleep.

It’s been a little while since I’ve shown my face on here, so just popping up on your feed in my most natural state — ti...
08/30/2026

It’s been a little while since I’ve shown my face on here, so just popping up on your feed in my most natural state — tired eyes, messy hair, no filter.♥️

08/27/2026

Best friend is here visiting from Ottawa for a few days 🥹🤍 It’s been almost 2 years since we’ve seen each other, and I have missed her SO much. So happy to finally have some much-needed bestie time together again. 💕

08/16/2026

I’ve recently started walking for my physical health, but somewhere along the way, I realized how much it’s helping my mental health too. 🩷

Chronic illness has changed so much about what movement and progress look like for me, but every walk is reminding me that I can still do hard things. I’m slowly trying to get out more, live more, and take little pieces of my life back one walk at a time.

Lately I’ve also been really trying to find something meaningful to do each day—something to look forward to, something that gets me out of bed, and something that keeps me from sleeping the day away. There’s definitely a fine line between pushing myself to live and listening to my body when it genuinely needs rest, and I’m still figuring out that balancing act.

I don’t walk very far or for very long yet, but I have some little goals I’m working toward. And if anyone local ever wants to join me for a little early-evening walk, I’m always happy to have a walking buddy. 🥹

08/15/2026

One of my biggest fears happened tonight.

I was trying to enjoy some time outside, so like always, I put my feeding pump and pain pump in my backpack. What I didn’t realize was that my feeding bag had two leaks, and for who knows how long, formula had been pooling into the bottom of my bag.

Unfortunately, my pain pump ended up sitting in it and eventually stopped working completely — meaning I was suddenly not receiving my continuous pain medication.

By this point it was already well into the evening and both of my nursing visits for the day were finished. An emergency request was put in for a replacement pump to be delivered within four hours, and another nurse came out to see if she could get mine working again. Despite everyone’s best efforts, it was done.

Because I had already gone about 2½–3 hours without my medication, we calculated and gave me a direct injected dose to help prevent withdrawal and severe rebound pain. Thankfully, we were then able to temporarily factory-reset one of my IV pumps and have it programmed to run my pain medication until the replacement arrived.

Except… I’m writing this at 1 a.m., and the emergency replacement pump that was supposed to arrive by midnight still hasn’t shown up.

That being said, I’m very disappointed that the emergency request for a new pain pump was not fulfilled as expected, seeing as this is a high alert medication and I can go into withdrawal very quick without a fully operating pump. So I imagine that this is going to be documented as an event on the pharmacy side, because interruptions with medications like this can become extremely serious very quickly.

For now, I’m very grateful that I had people willing to problem solve quickly and that I’m safely covered for tonight. I’m finally headed to sleep, and I hope that tomorrow is a better day!

Hey everyone! Just a little update. 🩷I had my follow-up at the fracture clinic today and had some more X-rays done of my...
08/12/2026

Hey everyone! Just a little update. 🩷

I had my follow-up at the fracture clinic today and had some more X-rays done of my wrist. Pretty much everything is unchanged with my scaphoid fracture. They took my cast off for the X-rays and decided to graduate me to a more comfortable splint for the next five weeks.

I’ll be going back for another follow-up around September 22nd, so for now I just have to stick it out and give everything time to heal!

Quite honestly, at this point I actually found the cast more comfortable than the splint. My pain has been quite a bit higher since switching over, and everything feels super painful and stiff. Unfortunately, they only had a medium-sized splint available, so they sent me home in that for now and are ordering a smaller one for me. I’m hoping once I have the proper fit, the pain will settle down because there’s just way too much room and movement in this one.

For now, I’m praying everything heals well over these next several weeks and that afterward I’ll be able to work on regaining the strength and function in my hand, likely with some OT or physiotherapy down the road…

One day at a time! 🫶🏻

Hey everyone! Just a quick little update.The day after I got home from vacation, I unfortunately tripped and fell in the...
08/06/2026

Hey everyone! Just a quick little update.

The day after I got home from vacation, I unfortunately tripped and fell in the basement onto the concrete floor. I landed on an outstretched hand and immediately knew something was wrong.

I put on the wrist splint I already had at home as a precaution, and after talking with my nurses, I headed to the hospital on Monday for X-rays.

Unfortunately, I was right. The X-rays showed that I fractured my scaphoid bone in my wrist. I’ve actually had this injury before several years ago, so as soon as I fell, I had a feeling that’s what it was.

They put me in a plaster cast, and I’ll be heading to the fracture clinic next Tuesday. They’ll remove the cast, repeat the X-rays, and decide on the next steps. It could take 6–8 weeks to heal. I’m not sure yet whether they’ll put me back into another cast or transition me to a splint, but I’ll keep everyone updated after my appointment.

The good news is that the fracture only extends through the top portion of the scaphoid and does not go completely through the bone. If it had been a full fracture all the way through, surgery likely would have been needed, so I’m very thankful it wasn’t worse.

This definitely makes things a little more challenging because this is my only “good” arm at the moment. Even though it’s my non-dominant hand, my right shoulder is chronically unstable and spends a lot of time dislocated, so I rely heavily on my left arm.

Definitely not the souvenir I was hoping to bring home from vacation, but I’m staying positive and hoping for a smooth and speedy recovery. I’ll keep everyone posted after my fracture clinic appointment next Tuesday. 🩷

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