Amy’s Journey

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! ❤️

10/08/2026

Hey everyone! Just checking in with a little health update.

I finally got the MRI results back from my left hip!

For those who don’t know, back in my younger ballet years, I struggled with some pretty significant issues with my right hip. After having an MRI, we discovered two labral tears. Surgery was discussed at the time, but my surgeon explained that if I planned to continue dancing, there was a good chance I would just end up re-tearing them, so we decided against it.

Fast forward many years, and over the past year or so, I’ve been experiencing increasingly significant pain and issues with my left hip as well.

Unfortunately, my recent MRI confirmed a full-thickness labral tear in the anterosuperior acetabulum, along with degenerative changes in the hip joint. Essentially, another complete tear of the cartilage that helps stabilize the hip, along with some wear-and-tear changes.

So, that officially brings me to three labral tears between both hips!

What does this mean moving forward? Honestly, not a whole lot right now. More than anything, it gives me some answers and validation for the pain and difficulties I’ve been experiencing.

It doesn’t necessarily mean that surgery is in my future, especially with everything else I have going on medically. But if I ever decide to explore surgical options, at least we now have the imaging and a better understanding of what’s happening.

Living with Ehlers-Danlos syndrome certainly keeps things interesting, and unfortunately, my joints continue to remind me of that!

10/07/2026

I just want to take a minute and talk about Ehlers-Danlos syndrome, because I had an experience recently that reminded me how misunderstood this condition still is.

I saw a new provider who told me they worked with many EDS patients, but it became pretty apparent that their understanding of EDS was very focused on hypermobility and flexibility. And that was frustrating.

EDS is a connective tissue disorder, and connective tissue is throughout the entire body. It can affect far more than just the joints. Connective tissue is everywhere- skin, joints, organs etc

In my case, EDS and its complications have affected almost every system. I have severe joint instability/ dislocations and chronic pain, I rely on a GJ feeding tube and Portacath implanted in my chest, I have autonomic and cardiovascular issues, blood sugar dysregulation, and severe bladder and bowel dysfunction. I need to be catheterized every day, require daily treatments to help my bladder function, and rely on medication to have bowel movements.

My pain is severe enough that I'm followed by palliative care and have been on a continuous pain pump since March.

I walk into an appointments with a Port-a-Cath, feeding tube, continuous glucose monitor, subcutaneous lines and a pain pump. I require an enormous amount of medical care just to keep different systems in my body functioning.

So when EDS gets reduced to flexibility, it is incredibly frustrating.

Being flexible or even hypermobile also does not automatically mean someone has EDS. There are plenty of people who are hypermobile who do not have Ehlers-Danlos syndrome. There is so much more that goes into the clinical picture and diagnostic criteria than whether somebody can touch the floor or bend their joints farther than average.

I'm very lucky to have an amazing team of providers who truly understand EDS, which is probably why experiences like this are so frustrating. I search high and low for people to add to my care team who genuinely understand the condition.

EDS can be an incredibly debilitating condition. I've lost several friends over the last year due to complications related to EDS, which makes hearing it minimized to simply being flexible particularly difficult.

For most of us, this truly is a whole-body condition. It is so much more than being "bendy."

10/03/2026

Had such an amazing appointment with a new provider today! ♥️

He’s a a chiropractor and physiotherapist in one, although we are not doing any adjustments — nor am I able to with my Ehlers-Danlos syndrome anyway — and he is more than well aware of that. He has so many different treatment modalities and options that we can use together in the clinic to help with things like pain, inflammation, muscle tension, and overall function.

Today we focused mainly on assessing my right shoulder, neck, and back. Even though it was technically an assessment appointment, we were able to do some treatment as well. We did laser and red-light therapy directly along my neck and shoulder using a flexible gridded pad, and then I finished the appointment with about 5–10 minutes in their red-light booth, which was so lovely and relaxing.

I also realized while I was there that they do quite a bit with bracing and have access to a lot of different resources. After my nerve conduction study showed ulnar nerve entrapment, a good-quality hinged elbow brace was recommended, but I’ve had a hard time finding one that actually seems appropriate. He was able to take all of my measurements today and is going to order one that can be properly fitted to me, which I’m really excited about. I think it’ll be especially helpful next year while recovering from shoulder surgery too.

This appointment was actually very spur-of-the-moment, which is extremely unlike me, but I’m so glad I went. I had such a positive experience and genuinely look forward to going back.

It is SO nice to have a medical appointment that you don’t completely dread — where the treatments can actually be beneficial while also being relaxing, calm, and non-stressful. Such a nice change. 😮‍💨

10/02/2026

Hey everyone, little update…

I spent about four hours at Willett urgent care today getting checked out.

About four to four and a half weeks ago, I had a butterfly subcutaneous site in my upper outer buttock that was being used to give me my nausea medication. It was only in for about a week, but it was causing quite a bit of pain. When we removed it, we could gently press around the site over and over again — probably about 40 times — and fluid/medication just kept coming out. It was clear that things weren’t absorbing properly into my tissue.

Fast-forward four weeks, and the pain is still just as severe, if not worse. I can barely lie on that side because of how tender and painful the area is. My nurses felt that it warranted further investigation, mainly to make sure there wasn’t something like an abscess, pocket of medication or another complication going on underneath the skin.

On top of that, my blood sugars have been extremely wonky lately. I’ve been having a lot of hypoglycemic episodes even while running my D10 infusions, and for the last couple of weeks I’ve also been waking up almost every morning completely drenched in sweat.

Because my medical situation is complicated, the doctor asked whether I was comfortable having some further testing done there or whether I would rather go to the hospital. I was more than happy to have them start the investigation there.

They did blood work, a urine sample, and sent cultures, mainly trying to rule out things like infection/bloodstream infection, electrolyte abnormalities, or anything else that could potentially explain the blood sugar swings and severe night sweats.

The cultures will take around 48 hours to come back, while the rest of the blood work should hopefully be available sooner. If anything concerning shows up, I should receive a phone call, and I’m hoping to have copies of all of the results within the next couple of days.

Praying for some answers, but also praying that nothing seriously wrong shows up. ♥️

10/02/2026

Fall is in the air 🍂🍃

09/25/2026

Hi everyone! Long time no update ♥️There has been a lot going on lately, so I wanted to share two of the most recent updates.

First, I recently had a phone consultation with a new urologist in Toronto who is the only specialist in Ontario that places sacral neuromodulation (SNS) devices, also known as sacral nerve stimulators. We discussed moving forward with booking a one-week trial of the device.

The hope is that the stimulator would send signals through the sacral nerves to help my bladder function well enough that I could hopefully empty my bladder completely on my own and eliminate, or at least significantly reduce, the need for catheters. That would be absolutely life-changing for me. As an added bonus, it may also help with my bowel function.

Because of all of my other health issues, they would prefer to book an OR and place the trial device under anesthesia rather than doing it in the office, which I am completely okay with. I was told that it will definitely be happening next year, but I don’t have an exact date yet.

With my shoulder surgery now most likely happening around February 1st, I am really hoping and praying that the SNS trial can happen in January. If not, I’m hoping it can be scheduled in a way that doesn’t interfere too much with my shoulder surgery recovery, since I will need to be lying on my stomach for the placement. Prayers would be so appreciated that this trial can happen either in January or, at the latest, sometime around April. It would truly be a godsend if it could happen sooner. 🙏🏻

My second update is that today I’m heading to Hamilton General for an MRI of my hips. I haven’t had an MRI of them since my teenage dancing years. Back then, we discovered that I had a completely torn labrum on the right side.

Over the years, though, my left hip has become much more problematic. It frequently subluxes and dislocates and has been causing quite a bit of pain, so we’re now wondering whether there may be some tearing or other damage happening on the left side as well.

Hopefully today’s MRI will give us some answers. I’ll keep you guys posted once I know more. ♥️

09/14/2026

Well, I have officially hit a pretty big feeding tube milestone! 🥹🎉

For those who don’t know, I’ve struggled for the last two years with tolerating even very low feeding tube rates. It has taken a LOT of trial and error, medications, symptom management, patience, and very slowly working my way back up.

But today… I officially hit 70 mL’s an hour!!! 🙌🏻

I was joking with my nurses that if I ever made it back into the 70s, we needed to throw me a little “happy 70th” party — with a slightly unhinged twist, hence the banner. 😂 Apologies for the vulgar language, but the humour was definitely needed, especially with everything going on with Leo right now.

I still have a long way to go, but I’m really proud of this one. It has taken two years of hard work just to get back into the 70s, and today I finally did it. 🥹💛

70 mL’s/hr,!!! 🎉

09/13/2026

Hi family and friends! I wanted to share a fundraiser that has recently been created to help with the cost of private nursing care. There is absolutely no obligation to donate, but if you would like to read more about it, share it, or contribute, it would mean a lot to me and my family.

As many of you know, I rely on in-home nursing care twice a day for a large portion of my medical care and treatments. I do receive government-funded nursing support, but over the last year there have been ongoing staffing shortages and difficulties finding enough consistent nurses who are trained and comfortable managing the complexity of my care. At times, this has meant going several days without nursing support — sometimes missing up to six nursing visits in a short period of time.

When that happens, it has a significant impact on me physically and mentally. I work incredibly hard to make progress with my health, treatments, nutrition, mobility, and independence, and missing essential care can cause me to fall behind very quickly.

Because of these ongoing gaps, I have had to start looking into private nursing agencies. I currently have two private agencies lined up that have experienced RNs available who are trained and comfortable with the level of care I require and can hopefully step in when my regular agencies are unable to fill my visits appropriately. The hope is that I would only need private nursing approximately one to three times per week while we continue working toward more consistent long-term coverage, but unfortunately private nursing is entirely out of pocket.

This is also becoming increasingly important as I prepare for my next shoulder reconstruction, which is tentatively scheduled for February 2027. During that recovery, consistent nursing care will be absolutely essential, and missed visits simply won’t be something we can safely manage.

The fundraiser was created to help offset some of those private nursing costs and give us a little more security when gaps in care happen. Again, there is truly no pressure or obligation whatsoever. Even simply reading or sharing the fundraiser helps more than you know.

Thank you so much for continuing to support me. ❤️

Hi, my name is Dustin, and I’m creating this GoFundMe on behalf of my fri… Dustin Wood needs your support for Help Amy Access Essential In-Home Nursing Care