Help to pay for Medical Costs - Rare Disease caused by a Brain Tumour
A horrible and crippling Disease that will not steal anymore of my life from me. I will beat this!Bay of Plenty
At first I was scared.
Then I was angry.
Now, I'm getting ready.
Three months ago I was diagnosed with a rare disease called Cushing's Disease.
Cushings Disease is so rare only 3 out of every 1 million people are diagnosed every year world wide.
I have a tumour on my pituitary gland in my head that produces cortisol - the stress hormone - over the years of not being recognised for what it was, I have developed some very serious health conditions related to this disease.
Day to day living can be very hard and my body has slowly deteriorated to the point where I had an active flesh eating virus for 18months, my blood pressure is uncontrollable, pre diabetes, I have a damaged liver, fatigue, migraines, weak muscles, impaired vision, B12 deficiency, Vitamin D deficiency, high Hb1c, cognitive issues, no antimflammatory or immune responses, antibiotic resistance, recurrent infections, heart palpitations, pins and needles and numbness in my limbs.
These though, are only a small number of my symptoms.
For 6 years I have slipped under the radar and have been categorised and treated under the mental health umbrella.
Numerous times I have been prescribed anti phsycotic medications and told to "deal with my anxiety" that I am a "hypochondriac" and that "perhaps my blood pressures that high because I have white-coat-itis" (a term used for those scared of doctors)
I am 28, I have two children and a once very successful business which I have since not been able to operate due to my decline in health.
I am not who I used to be anymore. I look different because the overproduction of hormones has changed my face shape and body shape.
I've been to see so many doctors that told me to eat better, lose weight, deal with my anxiety. To be honest, I've been mistreated by a lot of medical professionals.
I'm not upset that no one found the tumour earlier - I'm upset that so many doctors are quick to put it down to my "mental health" instead of actually taking the time to investigate why I had all these health problems.
I am in pain every day.
I am now only functioning because of medication, God and the faith that all this pain is worth it.
I am booked in for brain surgery in March this year but its not as simple as just removing the tumour, that's only the beginning.
My body will go into shock after the tumour is removed and I will have to go through months of rehabilitation while I withdrawal from excess hormones.
It will be painful and as weird as it sounds, the pain is what I want.
Being in agony is the best indication that I may be cured because my pituitary gland and adrenal glands will begin to produce what they're meant to be producing and after 6 years of having 9x the amount of stress hormone pumping through me I'll be back to having just one persons worth.
However, due to the size of the tumour and the fact that it is now pressing onto my optic nerve causing my vision and balance to deteriorate - the chances of removing the entire tumour without damaging the gland or optic nerve is becoming less likely.
The depression that comes with this disease is crippling and I've had to find many alternative coping mechanisms to find joy on a daily basis.
Somedays its been really hard and I've felt so lost and alone.
There aren't support groups at the library for people like me, there are only a few others in the whole of NZ that I know of so chatting to people that "get it" is hard.
The mental side of it is hard, the sense of feeling so disconnected to your own self, it's weird and very hard to explain but it sometimes feels like my spirit and body and mind are all separate.
I'm not whole.
Feeling like this for so long and then being told so often it was all in my head has had a huge effect on my self esteem and sense of self worth.
Having this diagnoses has given me some strength back.
It has been the confirmation I needed to know that my gut was always right.
I'm on the right path despite all the people who have told me otherwise.
I have recently moved towns to be near family through this time as my children and I need all the support we can get while I'm preparing for my next step in life.
I hate it that my kids have had to watch me slowly decline and I know how scary it is for them so keeping a smile on for them is so crutial.
Looking back, this diagnoses has been a true blessing in disguise.
I always knew something wasn't right with me, now I know.
Never in a million years did I think I would use the term "I have a Brain Tumour". Sometimes I still freak myself out saying it.
Even though it wasn't the answer I expected - now I can prepare myself for my next step - surgery.
They go up my nose to remove the tumour, it is fascinacting how they do it really, I try not to think about it too much though, having headpins screwed into my head holding my head in place while they drill through my sinuses into my skull and suck tiny bits of tumour out my nostrils.
Oh man, what an experience this will be.
I have alot of ongoing medical and rehabilitation therapy expenses now and keeping my body as healthy as possible with a variety of natural supplements is essential for my recovery and quality of life.
As I lack in a variety of essential vitamins and minerals and have a few deficiencies it's imperitive that I continue to take them but they are very costly.
Life has certainly become so much more valuable to me now and I am so grateful for the one doctor (Dr Glen Davies, Taupo Medical) that took one look at me and knew within 2 minutes that I was not okay. He straight away booked me in for a special 'Cortisol Blood test'. This came back high and within the next few weeks I was admitted into Waikato Hospital where they conducted heaps of tests to finally confirm Cushings Disease. Glen Davies literally saved my life - left untreated for much longer this tumour would've killed me.
I've created this fundraiser not only to ask for help but also to create awareness around Rare Diseases, unfair dismissal, mental health awareness, patient care and basic empathy towards other human beings.
My journey may help someone discover an answer so they don't have to suffer like I have had to.
Cushing's disease may be very rare, but it's not rare enough that I didn't get it.
Sometimes it's not just "in our head" it is IN our head.
Trust your gut and get a second opinion, or a third or forth.
My surgery date is getting closer and I will be in Auckland Hospital for a week and then in Waikato hospital for a week, during this time my mother and sister will be providing for my children's needs and taking turns to be there for them however my sister has 3 children and my mum works full time so over this period of time it will be somewhat very hard on everybody and financially a huge strain.
We all live in Papamoa so travel is a biggy too.
We appreciate any help towards this ❤️
God bless and Thank you so much for your support
Use of funds
Vitamin C Infusions
Specialist and GP Visits
Accommodation costs for family while I'm in Auckland for Surgery and Waikato for recovery.
Physical and rehabilitation therapy after surgery
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This page was created on 9 Jan 2020 and closes on 30 Jan 2020.