Winter 2024 Update
Despire throwing everything at this complex chronic illness the amyloidosis persists and continue to cause a great deal of mischief in multiple organs in my body. While I remain positive, I have to admit that my core weight has dropped very low. The water retention has restricted my mobility meaning short walks are have been very challenging and anything else is too much, shortly after christmas I started to experience a great deal of pain and discomfort, lack of sleep and loss of appetite.
It has been a very challenging time with many hosptial visits and very bleak news from the Drs. I received the dreaded "there's nothing we can do' a couple of weeks ago while in hosptial going through multiple IV's to reduce the oedema that just keeps stacking up in my legs and torso making sleeping and eating very difficult and making me rely on heavy opiates to manage the pain.
Discharged from hospital with more medication that I have ever taken in my entire life, I returned home to rest and start to reassess my options and plan moving forwards. I don't have many options and while the plant medicine help with some aspects of this they don't help with the whole issue.
Deep in prayer asking my guides and those in spirit to help me, I reached out to a therapist who mentioned a form of frequency healing to me some months ago, if she knew anyone who did it. She passed me a phone number and what happened next was divinely guided. I phoned this lady who has some incredible resources at her fingertips and if I could get myself down to her nearly 350 miles away the following day she could fit me in as she would be working away for the rest of the month.
So we jumped in the car and headed down, not sure how we would find the funds to cover the expenses but with no other options we said yes and went for it. I have had 4 sessions and have seen marked improvments in my symptoms in this short window of time, reduced pain so I am no longer taking the opiates, can go to the toilet normally again, significantly reduced oedema and swelling, vastly improved sleeping and my appetite returning.
I now have to take two weeks of very deep rest, gentle walks, stretching and relaxation before heading back there for another round of 4 sessions early february.
I ask that anyone who can, please do donate to support me through this time, it is so much appreciated I cannot begin to tell you what it means to me. I have not given up, but really do need need a bit of extra support at this time and could not do it without you and your kindness and generosity.
From the heart,
Update Spring 2023
This year I find myself still on the path to wellness, I had a visit at St Barts and Colchester Hospital and this is the latest news from them.
"Things are as well as we could expect, a lot has stabilised and is steady and has been for about six months. Whatever you are doing keep doing it."
I am pretty happy with that! Thank you for cheerleading me along this crazy journey, it means a lot to me.
With 2023 ahead I still need your support, many of my symptoms have changed and others have arisen. I am most certainly struggling more mentally and psychologically than I was last year, oedema and breathlessness are far less than they were and tiredness is not as debilitating as it was. However, I do very quickly get tired, need to stop, and become unable to process things and am at the mercy of brain fog (unable to find my words, forget things, can't think clearly, cannot organise simple tasks, run out of brain power, get anxious and overwhelmed and break down) and low resilience.
This is a changing and unpredictable journey and one that I work on staying focused on the outcome I do want to see, through visualisation, breathwork and meditation.
Please do donate, or share, share, share this page. I have reduced treatments to a minimum, and receive benefits (which is not a lot) I am still waiting for PIP payment (Currently that is with the courts, for a tribunal hearing date TBC) however I still have some quite big costs ahead of me including:
Varifocal glasses - my eyesight has deteriorated significantly and long-sighted lenses are no longer cutting it - £100
Repairs on my car, power steering pump/reservoir, new cv joint, 4 wheel assessment and realignment - £500-600
3 months of extras - supplements and food £600
3 months of treatments - Nutritionist, Naturopath, Acupuncturist and Herbalist - £1000
There are also the ongoing costs of day-to-day which all add up, on top of the extras. If you can help me continue to fundraise and lots of people donate a little extra or a few donate a lot, I will be so very grateful.
Thank you for sharing, thank you for supporting me, and thank you for caring.
From the heart,
BACK STORY 2022
The journey so far and a bit about me
For those who don't know me, I'm 45 and live with my cat in Constable Country, which is a little piece of the beautiful English countryside. I love animals, colour, crystals, sunsets and sunrises, laughter, dance music, outdoor fires, good food and deep conversations with real and interesting people. I'm heart centred, open and a bit mad; in a good way!
I spent my life doing some pretty cool things, meeting some brilliant people and animals along the way! The past 16 years of studying, learning and gaining really valuable experience with the human body, learning how energy works, the principles of TCM - Traditional Chinese Medicine Five Elements, vibrational and functional medicine to name a few. I have helped and worked with thousands of women, animals and children across the globe since 2006.
Many of my hopes and dreams came crashing down on the 10th of January 2022 as I received the news no one wants to receive.
It still feels like a dream, that I am even writing to ask for your financial support on my journey to wellness.
I have a rare blood cancer with added complications of AL amyloidosis which is in the heart, the liver and the spleen as well as nerves, tendons and ligaments.
If you read Dr Google or listen to the Drs it is bleak, far bleaker than I want to share as I do not want to shock anyone by the timeframes they are talking about. Take it from me I have every intention of living old disgracefully with my gorgeous partner and not being a 'statistic', in the meantime, my focus is on optimum wellness and quality of life.
If you do peek on the internet you have been warned that it is not easy to read and there are many inaccuracies online!!!
How it all affects me
Thank you for reading this so far, I appreciate you taking the time and will explain a lot more below. Day to day I look and act quite "normal" (those who know me will laugh at this) however:
- I get tired quickly
- have little strength and stamina
- get breathless at the simplest thing, it even happens when I am laying down
- my body aches at times, especially when I am tired, cold or hungry, long before I am ready to sit, lay down or rest.
- sitting, standing or even walking for long periods is difficult.
- anaemia meaning I have less energy
- brain fog which can leave me confused by the simplest of matters
- oedema in my legs, arms and face which is painful and tight when swollen
- walking is limited to short walks nowhere near the 10,000 steps I used to do without batting an eyelid
- carpel tunnel in my wrists and hands, meaning I drop a lot of things including Sunday roasts and boiling water
- anxiety and overwhelm
- cold hands and feet
- sensitive to drafts
I most certainly do not have the energy levels I did last summer or the summers before.
I started at university in Sept 2021 to further improve my knowledge, career opportunities and positive impact here on this planet, Sadly I have hardly attended university this year and the course is on hold until I am well.
I am finding it a struggle to work more than a few hours a week in my self-employed work, so have a very low income and this is one of the biggest reasons why I am asking for your help.
The wellness path I have chosen and why.
I have chosen to work with therapists who have proven track records in cancer recovery, their work is based on the five elements of TCM, functional and vibrational medicine, and the majority of these are private therapists and specialists.
Sadly big Pharma does not like individuals or organisations who make "cancer recovery claims" and we live in a world of censorship so be aware that if you google some of this, you may read things that don't make sense or are written off as 'pseudo-science' or quackery.
Thankfully through my network of amazing people (including many cancer survivors) and community of incredible therapists, I have been lucky enough to be offered the opportunity to work with some of them at this time and this is where you come in!
While I choose to focus on my wellness journey, the allopathic route is not currently my chosen path for 4 main reasons. I share them here as further understanding for you of why I have chosen the wellness path I am and ask for you to be respectful of my chosen path.
1st reason is one of the drugs involved has very serious implications for mental health, schizophrenia, suicidal thoughts, anxiety and depression - that kind of thing..... Mental health is an area I spent the past 4 years working on to be in a perfect place after having a very dark time mentally in 2017-2018 and I do not wish to melodise this.
2nd reason is that the illness I have cannot be cut out, or shrunk to nothing, it is a lifelong condition and will require the drug cocktail treatment repeatedly throughout life.
3rd reason is I have spent my life proactively avoiding meds, I rarely even take paracetamol for a headache so to entertain a future on a cocktail of pharmaceuticals, isolation and risk poor mental health in a bid to get me well just doesn't sit within my belief system, especially when I know there are so many other ways to approach this.
4th reason is the allopathic chemotherapy route includes a cocktail of 5 different drugs, none of which help or support the amyloidosis part of the illness.
What help I need!
Signed off work for initially 1 year, which means University is out too. While this is a blow, I have to prioritise the wellness journey, not worry about my bills being paid, and not be in survival or 'fight of flight' mode.
I choose to activate 'rest and repair', working with the parasympathetic nervous system (where healing happens) and your support with the treatments will make that a reality.
I have calculated the amount I need to be £1,333 a month (this includes most of my current outgoings) plus money for treatments, hence the total amount I wish to raise is more than £16,000 for the next year ahead.
With the new 'disabled' status I applied for state benefits, only to be shut down at every door and told by the job centre I was not eligible for anything, and that I was to write to my MP!
I was told categorically that I was not entitled to any money because I was classed as a 'full-time student' despite having a sick note, not attending university for months and university putting my course on hold while I recover. ( I have complained and appealed).
How you can help.
My plea here is that each one of my friends and their friends puts the equivalent of a monetary 'note' in the pot of their choice (£5, £10, £20, £50+) so that collectively you can help me get through this! Any contribution no matter how small is welcome, even if you can't afford much, just pop what you can in the pot, it all helps!
I am still astounded I'm having to ask for financial help to be able to get through the treatments that I have ahead of me. However here I am and this is what I am dealing with.
This is a simple cry for help, can you find a way to put something in the pot towards getting me well?
Thank you, thank you, thank you from the bottom of my heart for reading this, for your contribution and for sharing this post far and wide.
I trust that my prayers will be answered.
From the heart,