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Amy’s Journey, Brantford, ON (2026)

11/03/2026

GI Appointment Update! ❤️

First of all, thank you so much to everyone who kept me in their thoughts and prayers today! I’m so happy to share that my appointment with my new GI specialist went incredibly well!

He was very kind, soft-spoken, thorough, and took plenty of time to listen to my concerns. After reviewing my previous motility scans from 2020, he confidently confirmed that I do have gastroparesis.

The exciting news is that we are going to trial a motility medication called Motegrity (prucalopride)! This is something I’ve wanted to try for a very long time. The hope is that it will improve my digestive motility, nausea, bowel function, and tolerance of tube feeds, and potentially allow me to tolerate small amounts by mouth without immediately draining them through my G-tube. I’m praying the initial side effects are manageable and that this medication could be a game changer! 🤞🏻

Another interesting part of today’s appointment was that both the GI specialist and resident felt there was a strong possibility I also have Superior Mesenteric Artery Syndrome (SMAS). They didn’t feel further testing was necessary at this time, as weight restoration is a major part of treatment when this condition is present.

For now, our focus is on trying this medication, improving my symptoms and nutritional intake, and hopefully gaining some much-needed weight, which may also help if SMAS is present.

We also discussed continuing celiac plexus nerve blocks if they remain helpful for my abdominal pain. He explained how complex gastrointestinal issues can be in patients with Ehlers-Danlos Syndrome, and how treatment often requires trial and error and taking things very slowly.

I have a follow-up scheduled for February!

After how difficult things have been lately, I’m leaving this appointment feeling genuinely hopeful. ❤️ I’m praying this medication agrees with my body and helps improve my quality of life, nutrition, and overall health.

11/03/2026

Prayers would be greatly appreciated as I head into an appointment with a new GI doctor tomorrow. 🙏🏻❤️

I’m feeling quite anxious about this appointment, as I have a lot to discuss, especially with a doctor who has never worked with me before or been involved in my care.

I’m praying that he is kind, thorough, attentive, and willing to take the time to truly understand my complex medical history and ongoing struggles.

I’m really hoping we can explore some new medication options, discuss better treatment plans, and potentially get some further testing underway to help figure out what’s going on.

Unfortunately, over the last month or so, things have really gone downhill in terms of my gastrointestinal symptoms, particularly my stomach pain and nausea control. It’s been incredibly challenging, and I’m really hoping this appointment will be a step in the right direction toward finding some relief and improving my quality of life.

Praying for a positive, productive appointment and a doctor who is willing to work alongside me to find some answers. ❤️🙏🏻

10/30/2026

A little medical update! ❤️‍🩹

I officially have a date for three procedures in one!

On November 24th, I will be having my GJ feeding tube changed, my port-a-cath removed, and a PICC line inserted.

This is approaching quickly, and I would be so incredibly grateful for any prayers and positive thoughts that everything goes smoothly! ❤️

One of my biggest concerns is whether my interventional radiology doctor will be able to find suitable vascular access to place the PICC line in my left arm. The last time he assessed my veins, he mentioned that there really wasn’t anything feasible to use. Unfortunately, my right arm isn’t an option because of my upcoming major shoulder surgery in February, which will require me to be in a sling.

I’m also praying that once the PICC line is placed, I won’t experience any complications or irritation, especially since it will be stitched directly to my arm, just like my previous one.

I’m definitely feeling a little anxious about everything, but I’m trying to remain hopeful that it will all work out. I’ll be so relieved once these procedures are behind me and I can focus on preparing for my shoulder surgery.

Thank you all so much for your continued love, prayers, and support. It truly means more than you know! ❤️

10/29/2026

Feeling incredibly grateful and blessed to have made it another year. 🥹💗

This past year has been filled with more challenges, difficult moments, and uncertainty than I could have ever imagined, but through it all, I have found so many reasons to be thankful.

Every birthday is a beautiful reminder of just how precious life truly is, and I genuinely don’t take a single moment for granted. I’m so incredibly thankful for another year of memories, love, growth, and all the little moments that make life worth celebrating.

Here’s to 31! 🎂✨💕

10/27/2026

A little update on my D5/D10 situation! ❤️

As per the recommendation of my dietitian, we made the decision to switch back to D10 (10% dextrose) infusions this morning.

I’m already feeling quite a bit better, which is such a relief! However, I’d be lying if I said I wasn’t extremely discouraged after spending the last seven days trying so hard to make the transition back to D5 (5% dextrose) work.

As much as I wanted this to be successful, it’s clear that my body still needs that additional support right now.

I’m hopeful that once I’m in a more stable place nutritionally and able to tolerate a higher intake through my feeding tube, we can revisit this goal. Perhaps we can come up with a plan to alternate between D5 and D10 rather than making such a big transition all at once.

Ultimately, I think returning to D10 is the right decision for now, especially with a major surgery coming up in February 2027. Keeping my body as nourished, stable, and optimized as possible going into surgery is incredibly important.

It’s disappointing, but seven days of trying is still something I’m proud of.

10/27/2026

I’m writing this with tears in my eyes because I’m both incredibly proud of myself, but also extremely frustrated and feeling a little defeated..

Today marks SIX DAYS of transitioning from D10 infusions back to D5 infusions!

For those who aren’t familiar, D10 and D5 are intravenous (IV) dextrose solutions that provide glucose (sugar) directly into my bloodstream. D10 contains 10% dextrose, while D5 contains 5%. This means that, at the same infusion rate, D5 provides half the amount of glucose and calories that D10 does.

For me, these infusions have been an important part of helping maintain my blood sugar and providing additional calories and energy that I’m not always able to get through my feeding tube.

After relying on D10 infusions for the last year and a half, one of my biggest goals has always been to transition back to D5 and hopefully remain stable in terms of my blood sugar, calories, and energy. Now that my feeding tube rate is a little higher, we figured it was worth giving it another try.

One HUGE positive is that my blood sugars have actually been handling this transition surprisingly well! I’ve only experienced a couple of hypoglycemic episodes overnight, which have thankfully been easily manageable. That alone is such a big accomplishment and gives me hope that this transition might actually be possible. ❤️

But as much as I desperately want to continue on D5, I’m beginning to worry that my body just isn’t tolerating the transition as well as I had hoped.

I’ve been brushing off the exhaustion every day, telling myself to keep pushing through and giving my body time to adjust. But the reality is, my body is struggling. I’m no longer receiving the same amount of glucose and calories that I’ve relied on for so long, and I’m worried that the missing energy is really starting to take a toll.

I am absolutely exhausted. I can barely stay awake, I’m unintentionally falling asleep multiple times throughout the day, and I have next to no energy. Even something as simple as washing my hair feels like it requires every ounce of physical and mental energy I have left.

I knew this transition wouldn’t necessarily be easy, but I had hoped that by day six, I would be starting to feel a little more like myself.

I’m so proud of the progress I’ve made, but I’m also terrified of having to take a step backward.

I’m trying to remind myself that needing D10 again wouldn’t erase the progress I’ve made, but emotionally, it’s hard when I’ve been so hopeful that this time would be different.

Right now, I’m just praying for some guidance and clarity on what the right decision is moving forward. I want so badly for my body to adjust and for D5 to be enough, but I also know I can’t keep pushing myself when my body is telling me it’s struggling.

Six days might not sound like much to some, but to me, it’s a milestone I’ve been working toward for a very long time.

I’m proud of myself for trying. I’m just really hoping I don’t have to give up on this goal quite yet…

10/19/2026

Today, I had my very first massage and cupping treatment! ❤️

I’ve done a lot of research on cupping and its potential benefits for pain, muscle tension, and fascia. Having lived with a chronically dislocated right shoulder for the last two and a half years, I experience an incredible amount of pain and tension throughout my shoulder, back, and scapula.

When I tell you that, for the first time in over TWO AND A HALF YEARS, all of that pain disappeared🥹

For the first time in years, my shoulder actually felt NORMAL. The amount of tension that was released was unbelievable. It genuinely felt like I was wearing the most supportive shoulder brace imaginable, except there was no brace. My muscles were finally relaxed, my shoulder felt supported, and I could BREATHE without that constant tightness.

I went into this treatment feeling confident that it was something I wanted to try and could potentially benefit from. My amazing massage therapist even admitted that he was initially a little nervous about treating me, given the complexity of my shoulder. But as the treatment progressed, he could actually see and feel how much my muscles were relaxing. He acknowledged how much of a difference it made and was very happy as well.

I cannot even begin to describe how incredible that release felt. After years of constant pain, guarding, and tension, experiencing even one hour of relief is something I will never take for granted.

I’m absolutely soaking up every second of how good my shoulder and scapular muscles feel right now.

And before anyone asks, NO, it does not hurt! 😂 I know these marks look incredibly painful, but I promise the treatment itself wasn’t painful for me at all!

I’m already looking forward to doing this again, hopefully in about four weeks! We’ll see how long these cupping marks stick around.

That was genuinely one of the best hours of my entire life, and I couldn’t have asked for a better experience for my very first massage.

Today, I’m just really, really happy.❤️

10/16/2026

I don’t want to be medicated for the rest of my life, but…

I’m no longer crying myself to sleep every single night because the pain is too much to bear.

I don’t want to be medicated for the rest of my life, but the bathroom floor is often cold at 3 a.m. when the nausea is so unbearable that the toilet becomes your best friend.

I don’t want to be medicated for the rest of my life, but I now wake up excited for a new day instead of dreading the pain that used to come with simply existing.

I don’t want to be medicated for the rest of my life, but I’m finally able to move my body more than I have in years, go for walks, and experience moments where I’m almost completely pain-free. Something I once could have only dreamed of.

I don’t want to be medicated for the rest of my life, but I’m able to laugh more, smile more, and actually be present with my family, my friends, and myself instead of constantly fighting a battle inside my own body.

I don’t want to be medicated for the rest of my life, but I now have the energy to vacuum, do my laundry, clean, and even wash my hair almost every day. It’s the little things that seem so insignificant to others but mean absolutely everything to me.

And I realize that being medicated doesn’t mean every day is going to be perfect. I still have bad days. I still have days where my symptoms are overwhelming, where my body reminds me of its limitations, and where I have to be incredibly mindful of how and where I expend my energy.

But being medicated has given me the ability to do more, experience more, and be more present in my own life than I ever could before.

Because the truth is, I never wanted a life that revolved around medications, appointments, and symptom management.

I just wanted a life that felt worth waking up for.

And if medication is what allows me to find pieces of myself that chronic pain took away, then maybe that’s not something I should ever have to justify.

I don’t want to be medicated for the rest of my life.

But I don’t want to spend the rest of my life suffering, either.

-Amy Masters

10/11/2026

October is Dysautonomia Awareness Month!

POTS is so much more than just a racing heart and fainting. Despite its cardiovascular symptoms, POTS is not primarily a heart condition, but rather a disorder of the autonomic nervous system. It can affect nearly every system in the body, including cardiovascular, neurological, gastrointestinal, urinary, and temperature regulation, just to name a few.

For some, POTS is manageable with increased sodium and fluids. For others, it can be extremely debilitating, involving frequent fainting episodes, intense adrenaline surges, significant digestive dysfunction, bladder issues, chronic fatigue, and sometimes even the need for medical devices, IV fluids, and daily medical treatments.

And let’s address another common misconception: POTS is NOT simply caused by being deconditioned or out of shape. Many individuals living with POTS were previously competitive athletes, dancers, and highly active individuals. While deconditioning can worsen symptoms, it is not the underlying cause of POTS, and physical fitness does not make someone immune to developing it.

POTS looks different for everyone, and its severity should never be underestimated. I’m sharing this to raise awareness, challenge misconceptions, and help others understand that POTS is so much more than simply dizziness and a high heart rate. It’s a complex, multisystem disorder that can significantly impact a person’s quality of life. ♥️

10/09/2026

Hello everyone! ❤️

I have a feeling this is going to be a fairly active week for medical updates!

As many of you know, my right shoulder reconstruction is officially scheduled for February 1st! However, there is a good chance I could get in earlier if a cancellation becomes available between December and February.

With that being said, I contacted the hospital today to begin planning my port removal surgery and PICC line insertion, potentially for the end of November. This is quite a bit earlier than I originally anticipated, but we need to be prepared in case my shoulder surgery gets moved up!

To be honest, as sad as I am to be getting rid of this port, especially since I haven’t had it very long and fought incredibly hard to have this specific pediatric port placed, I’m actually okay with having it removed a little earlier. Unfortunately, it’s been causing me quite a bit of pain lately, so in some ways, the timing might be for the best.

I’m also holding on to the reassurance from my surgeon that once I’ve healed from shoulder surgery, we should be able to have another port placed. That would officially be my fourth port-a-cath, which is honestly crazy to think about!

There are definitely some pros and cons to switching back to a PICC line.

The positives:

* I’ll be able to enjoy more frequent full-body showers with a protective PICC sleeve, rather than only showering once or twice a week when my port is deaccessed.
* We’ll be one step closer to being ready for shoulder surgery!
* Hopefully, this will mean some relief from the pain my current port has been causing.

The challenges:

* PICC dressing changes are extremely difficult for me mentally, especially because I’m allergic to the devices typically used to secure the line. My PICCs usually need to be stitched directly to my arm, which can cause additional pain and skin irritation.
* Insertion is notoriously difficult because my vessels are extremely small. Previous insertions have required multiple attempts, and I typically need a pediatric 4 Fr PICC because my vessels cannot accommodate larger sizes.
* Because of the smaller catheter, my IV fluids often have to run significantly slower, meaning I’ll spend considerably more time connected to my IV pole.
* I could potentially be living with a PICC line for 6–12 months between surgery and recovery, which I’m really not looking forward to.

My biggest hope is that we’re able to successfully place the PICC in my left arm. My surgeon would prefer this because my reconstruction is on the right shoulder, but previous left-sided insertions have been particularly challenging.

While I’m definitely not looking forward to going back to life with a PICC line, knowing that it should hopefully only be temporary makes the transition a little easier to accept.

Anyways, the process is officially underway! I’m trying not to get too far ahead of myself, but I’m definitely feeling a little anxious about this transition.

Prayers that everything goes smoothly, especially if we’re moving forward with the procedures in November! ❤️