Amy’s Journey

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

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. 🩷

07/29/2026

Rainy day up at the cottage 🌧️🤍

It’s been such an amazing week so far, and I’m feeling incredibly grateful to be here.

Thank you so much to everyone who has supported me through my GoFundMe. Your kindness has made this trip and the nursing care I need possible. ❤️

07/10/2026

Hi everyone! 💛

Just wanted to share a couple of health updates.

Today I had my urodynamic bladder study in Richmond Hill. I’m not going to go into too much detail because it was honestly a rough and slightly traumatic experience, but I’m so glad it’s behind me.

Between the testing itself and my bladder dysfunction afterward, I went through five catheters today, so I’m definitely feeling very sore and uncomfortable. I was also sent home with a dose of antibiotics to help prevent a UTI from all of the catheterizations.

The urologist said my bladder function is very poor, and my bladder pressures are quite high. She believes the severity of my POTS and autonomic dysfunction is contributing significantly to my urinary retention because the nerves and muscles that should coordinate to let my bladder empty properly aren’t working the way they should.

The encouraging news is that she still feels I’m an excellent candidate for a sacral nerve stimulator trial. She’ll be referring me to the specialist who performs the procedure. If the two-week trial is successful, the device can be permanently implanted in my lower back. The hope is that it could improve both my urinary retention and my chronic constipation. The wait time for that is anywhere between 3-8 months.

I also had my meeting with the palliative care team this week, which went really well. My doctor explained that I have allodynia, meaning my nervous system is overly sensitive and can interpret normal touch as pain. We believe this is contributing to the severe nerve-related bone pain episodes I’ve been experiencing.

Because of that, I’ve officially started a very low dose of methadone (1 mL once daily) in addition to my pain pump to see if it helps target the nerve pain. If it’s effective, there’s a good chance I’ll eventually be able to lower the dose on my pain pump, which would be a huge win.

Lastly, thank you all so much for your prayers, messages, and support. It truly means the world to me. ❤️

I’m also incredibly grateful that all of my major medical appointments are finally behind me until I head up north with my family for our cottage trip. It feels like such a huge weight has been lifted off my shoulders, and I’m really looking forward to making some happy memories.

07/07/2026

Sometimes I sit back and think... Life is so weird..

This morning I was under anesthesia. A few hours later, I was home, took a nap in the sun, and by the evening my sister had me out in the convertible running errands, grabbing a drink through the drive-thru, and enjoying life in a way I honestly haven't in a long time.

Meanwhile, I've been pushing through excruciating bone pain, and tomorrow I'll be sitting down with a three-people involved with my palliative care team to go over everything that's been happening.
It's such a strange contrast.

You can look at someone out enjoying a beautiful summer evening and never realize what their day-or their life-actually looks like behind the scenes.

You really never know what someone else is carrying...🩷

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