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Kristy’s Advocacy

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Kristy’s Advocacy

Kristy’s medical journey. The fight for adequate health care and NDIS access

17/08/2026

Yesterday, the phone rang with news we didn't realize we needed so badly.

Carers Gateway called to ask if we’d be interested in a weekend away in Canberra. It hit us right then: this will be our first actual break in over two years.

While we are super grateful and excited, we’ve learned a very valuable lesson over the years when it comes to family trips: Never announce it too early. Silence saves your sanity.
The night before is the absolute deadline.
If we told the kids today, we wouldn't hear the end of "How many nights left?" and "Are we going today?" until the second we pack the car.

So for now, mum's the word!
When you plan a trip or a getaway, do you tell your kids right away or keep it a secret until the last minute?

11/08/2026

🎉🎉🎉 Woohoo kristy was able to leave the house yesterday!!!

Not to do anything fun. It was her monthly implant and SPC change. Once again the Comunity nurse absolutely flawless

We often forget about the little things that either make or break your day. What’s helped you through difficult times? fans

05/08/2026

To everyone who has messaged thank you. I just needed a little break. I will try my best to reply to all unanswered comments and messages Kristy Stopps@top fans

24/07/2026

I wanted to pop on today and clear up a misunderstanding from yesterday’s post.
Reading through the comments, a few people felt I was criticizing nursing staff. That was never the intention, and if it read that way, I appreciate the chance to clarify.

Here’s the reality: No one expects nurses to know every single treatment on earth. The medical world is massive. DMSO is specialized and uncommon. The nurses administering it at the time simply hadn't administered it before.
They did their jobs safely. They read protocols, verified procedures, and took care of Kristy as professionals do.

As a patient or support person, starting an uncommon procedure can feel daunting. That observation wasn't a jab at nursing qualifications; it was just a reflection on how niche certain therapies are.

We have immense gratitude for the nurses and healthcare staff who support Kristy and so many others through complex journeys every day.
Appreciate everyone who shared their perspective respectfully.

Aprelle Richardson fans

23/07/2026

Looking back at where we were this time last year. Kristy was going through DMSO (Dimethyl Sulfoxide) treatment, and it was a real eye-opener.

The crazy part about the whole experience wasn't just the treatment itself. It was realizing that the majority of the nursing staff had no idea what DMSO was.

For anyone unfamiliar, here is the simplified breakdown:
What it is: Dimethyl sulfoxide, a specialized anti-inflammatory compound.
How it works: It penetrates cellular membranes rapidly, driving down deep tissue inflammation and acting as a therapeutic carrier.
Why it's rare: It's typically used for specific conditions like interstitial cystitis or specialized inflammatory protocols, meaning standard clinical rotations rarely cover it.

It forced us to dive deep into the research and understand every detail of her care. Mainstream or unconventional, you always have to be your own biggest health advocate.

Where are you currently at on your health journey? Let's chat in the comments.

22/07/2026

Huge thank you for all the support and advice on yesterday’s post!

Change of subject.
I realized a lot of people might not know what an SPC (Suprapubic Catheter) actually is, or just how much the tubing material itself can make a difference.

Here is the quick breakdown:
What it is: An SPC is surgically placed directly into the bladder through the abdomen rather than the urethra. It gets changed every 4 to 6 weeks.

The initial struggle: Kristy started with standard clear tubing. It caused severe muscle spasms, kept getting stuck during routine changes, and the balloon actually burst and fell out.

The game changer: She switched to a different coated material (the brownish tubing shown here).

While catheter changes are never completely pain-free, this single material swap made her changes significantly easier, less traumatic, and much safer.

Medical gear is never one-size-fits-all. If standard equipment is causing you pain, always ask your healthcare team about alternative material options!

fans

21/07/2026

We finally got Kristy's test results back and took the time to sit down and unpack them.

To be completely honest, we were hoping for a definitive reason behind her severe symptoms. The tests showed a few minor things, but not enough change to explain what she is living with every day.

Is having 'mostly clear' results a good thing or a bad thing? When you are desperately hunting for answers, it is hard to know how to feel. We still strongly believe this entire puzzle is linked directly to her neck and back issues.
Here is where we go from here:

Unpacking every detail of these results with our GP.
Pushing for specialist referrals, specifically a Rheumatologist, a Neurologist, and a Neuroradiologist.
Continuing to advocate for real answers.

For anyone who has navigated this kind of medical limbo, we want to hear from you. What would your next move be?

fans

20/07/2026

The waiting game is always one of the toughest parts of any health journey.

Kristy had her autonomic dysfunction testing back on July 2nd. We were told to expect a 4 to 6 week wait, so we are right in the thick of it. The good news is things are moving behind the scenes, the lab has finished processing the files, and our care coordinator is helping us manage the next steps.

Instead of just booking a rushed appointment, we are taking a structured approach to this:

Step 1: Waiting for the exact results to be sent over to us directly so we can look them over.

Step 2: Reviewing the details together in the comfort of home so we can actually process the information.

Step 3: Booking our follow-up consultation with a clear list of questions ready to go.

It takes a lot of patience to navigate all these moving parts, but taking it step by step keeps us focused. Massive thanks to everyone who keeps sending positive vibes our way!

fans

19/07/2026

Tomorrow morning, the roads will be busy, the school gates will be crowded, and parents will be rushing to get their kids to class.
But Kristy won't be in the car.

It’s not because she’s lazy. It’s not because she doesn’t want to be there to see their smiles and say goodbye. It’s because she physically can’t.
That is the heavy, often invisible reality of living with a chronic illness.

The simple daily tasks that most people take for granted, or even complain about, are the exact moments that chronic pain and illness steal away. It changes the dynamic of a family, and it forces you to find perspective in the small things.

To anyone out there managing a chaotic morning tomorrow: embrace the rush. And to every partner, parent, and warrior fighting an invisible battle behind closed doors: we see you, and you are not alone.

fans

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