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I'm sick, my body is failing me. We need help to put the pieces together.

We have two diagnosis so far; fibromyalgia and hyper mobility - these two are forcing my body to work much harder than most others. 

My name is Kayla and the handsome guy in the photo is my husband, Jay.
Since 2012, we've been to hell and back in nearly every way possible. 
We've experienced: Multiple job loss, injuries, ill health and poverty just to name a few. 

Update Saturday 4 September 2021

Hey everyone!

I’m due to see the ENT on Tuesday. Anyone who’s spoken to me lately has probably heard my voice which has been growing huskier and now I lose my voice all together. GP is a bit concerned. I also have crazy bad congestion - which looks like is potentially related to hay fever. Speaking of hay fever… I’m lousy with hives atm they think it’s related to hay fever.

On Wednesday I’m back to the GP. Hoping for something better than my allergy meds for my hives. Can’t stop itching.

Friday I see the spine surgeon again for results of my latest MRI. 

It’s a big and expensive week for sure! With Jay now caring for me and not working we’re solely reliant his carer’s payments and my pension.

My medication is over $250 a fortnight. 

Any help towards the upcoming bills and medication would be highly appreciated. The more appointments we can get through before the new year the cheaper it will be.

You guys are all awesome rockstars and we are so grateful for all your help! 

26 July 2021.

Things have been a bit quiet here atm. Been getting tests done, but no real specialist appointments until mid-August.

Hearing test came back normal, but with fluid and pressure behind the ear drums. I see the ENT in September and the referral has been updated.

Kidney ultrasound came back normal so we are still none the wiser about why I’m having trouble urinating. Referral done for a private urologist today.

The endoscopy price task got handed to my mum, who found one that isn’t going to charge an arm and a leg. Unfortunately it’s on the Southside, but my gp did a referral for them today. So an appt will be made in coming weeks.

GP asked about mental health etc and seems to finally understand how much all of this is impacting my mental health.

GP was able to print off my latest MRI results, but not able to really give details about what it all means. Long story short, there is accelerated degeneration in my L5/S1 as well as a couple of bulging discs. There is inflammation between the hip and spine joints. We will learn more when I see the rheumatologist again in September.

Coming appointments:

August - New neurosurgeon, pain specialist

September - rheumatologist, ENT

I’m sure these two months will fill up with the other referrals I got today.

Thank you all so much for the love and support you’ve all given. I’ve had a lot of people reach out and just reconnect with me for the first time in years. Not to mention the fact donations are over $1500!! It’s incredible! Thank you all so, so much! 

Please continue to donate and share! We’re slowly finding answers and we’ve only been able to do it thanks to all of you! 

UPDATE:

Hey everyone,

Sorry for the radio silence, but life has been a little hectic. 

We’ve had quite a few blessings outside of Go Fund Me. We’re really taken back by the support we have received, whether it be monetary, prayer or even filling our pantry. 

On top of that, there has been so many people donating here. Thank you all so very much for the love and support you are giving. To know so many people want to help us means the world. Thank you! 

We’ve still got a long way to go though. We’re reaching the expensive test areas…

I rebooked my neurosurgeon appointment for August. I was having a panic attack about the idea of meeting the surgeon via phone.

Saw the GP recently and came out with another handful of referrals and scripts.

My vitamin D levels are low so I’ve started on a supplement to help that.

I need an ultrasound on my abdomen to try see if we can find why I still can’t urinate properly.

I also need an endoscopy to see what’s happening that way.

GP is a bit concerned about overwhelming me with too many specialists, but at the moment I’m just hell-bent on finding answers.

One of my ear drums is puckered or sucked in, meaning one of the tubes (it starts with E and I can’t pronounce it let alone spell it) in my ears is blocked. So if I ask you to repeat yourself, I really can’t hear you .

I need to start on a nasal spray, but didn’t have access to the Go Fund Me funds to pay $50 for it. 

The bank card arrived today so we’ll have easier access to the funds from now on.

No specialist appointments until the end of July/beginning of August. I’ll get my ultrasound and urine tests done by then and go back to the GP.

The endoscopy is looking at costing upwards of $1200 But I think when my pension card comes into account the price will go down.

Please continuing praying (those that are), please continue sharing my story and Go Fund Me, and if you are able please donate because we’ve still got a long way to go. Specialists and tests are not cheap.

—-

In November 2013, doctors discovered thanks to an undiagnosed birth defect, I was in heart failure.
On my 28th birthday I was told my chances of reaching 30 weren't good. 
I had life saving open heart surgery and a year later (after being told sternum wires do not move) I had my sternum wires removed after 
they moved and risked puncturing my lungs. 

My heart is now 'as healthy as we can expect it to be', but the rest of my body is failing me.
Over the past few years my health has been declining.
I now live in constant severe pain: My back, legs, shoulders and neck all cause debilitating pain. Many days making it near impossible to get out of bed. 
With the pain comes numbness, weakness and an electric shock feeling through each of my limbs. 
I have no energy and no strength over all. Simple tasks (like writing this) can take days. 
I get chronic headaches and migraines with noise and light sensitivity. 
When lying down there is a constant roaring and build up of pressure in my head and ears. 
I regularly get upset stomachs resulting in vomiting and diarrhoea. I am also intolerant to many foods and it can change regularly (one day I can be fine eating something, next time I get ill). 
I ache from the tips of my toes, to the tips of my fingers and top of my head. 
I regularly feel unwell and lethargic. 

My joints stiffen, lock and pop painfully, swelling regularly as well. 

So far doctors have found a slipped disc in my lower spine as well as degeneration through my hips and upper back. However, this does not fully explain the intensity of pain and the spread of it.  Nor does it explain my other symptoms. 

My life is controlled by my health, plans are constantly cancelled and major life events have to be put on hold. I am unable to work and am quickly losing my ability to care for myself and my freedom. 

Jay just lost his job. However, he regularly has to shuffle working long, late hours with caring for me. 

So now we're searching for answers. My health is controlling our lives and it needs to stop. 
I have been attempting to use the public health system, however the waits are long and usually impossible to get into.
We are attempting to go privately, however that costs money. 

While barely making ends meet previously, Jay (our only income earner) unexpectedly lost his job this past week due to financial cutbacks. 

So we are asking you to please help with my medical expenses. 

At the moment I have appointments booked with Rheumatologist, Pain Specialist, and a Spinal Surgeon.
I also have a referral for ENT and am on the public wait list for a urologist (am hoping to change to private). 

All donations will go to helping pay for these appointments, upgrading my health insurance to include hospital cover and paying for my medication (which at the moment is costing approx. $200 per fortnight). 

My first appointment is currently booked for the 9th of June 2021, I've been waiting 6 months for it.

My body has been through hell and despite our best efforts Jay and I can't do it alone anymore. We need your help, please!  

Chronological outline of health since
October 2012