Four years ago I was a young outgoing person, making my up the ladder as a business manager. Life was amazing! Our plans were to buy a house and one day have a family.
Fast forward to today........
That was before I was dealing with a debilitating incurable condition called Gastroparesis. This disease means that my digestion tract is paralysed for no reason, I can no longer process food from my esophagus to my bowel. I can no longer eat the foods I once loved and I can no longer drink my favourite drinks. I now am feed 24 hours a day 7 days a week, 365 days a year for the rest of my life via this tube attached to my face. My circumstances mean that my nasogastric tube is attached to a machine that is keeping me alive.
Prior to being diagnosed, I was seeing doctor after doctor after doctor, surgeons, specialists, I lost count around doctor #20. They all told me to go home, not worry, try to relax and all my symptoms would go away. Symptoms of chronic vomiting, nausea, severe abdominal pain, rapid heart rate, dizziness, major headaches, depression and severe weight loss. I couldn’t just relax and it did not just go away. To be told “not to worry” was not acceptable for me.
I did my research, every day to trying to find a possible solution, I requested test after test, and then I found a possible condition, I asked my specialist to run the specific test. Within two weeks it was found my intestines and stomach were strangling my heart and split my diaphragm. I required an urgent five hour surgery, if left undiagnosed it would have starved my stomach and intestines of blood, possibly leading to loosing vital organs or my life.
In 2015, I underwent an additional two operations, due to complications with this previous surgery. It is at this time, I could feel the blow of Gastroparesis. The vagus nerve controls the digestive tract, my vagus nerve was severely damaged and is no longer viable. This condition is incurable, 1 in 200,000 people are effected worldwide and it will last for my lifetime.
Socially, I hardly leave the house because this tube brings a lot of stares from the public, I have no confidence to face the world, but I am slowly making changes in this part of my life. My husband and family are a great support network.
The stares and comment are hard to handle, my husband Brendan and twin sister Rachel accompany me to the shops like a safety blanket. Often Brendan will do the shopping and everything to run the house hold while Rachel will take me to late night Kmart runs, when there is no one at the shops.
Brendan is amazing, He is there running me showers at 3am when I'm vomiting, when I can't get out of bed, He sets up my feeds at night and gets my hot water bottle ready every night to put on my tummy to try soothe the pain. He never complains, he never thinks of giving up on me, Brendan fights with me, he fights for me and he empowers me with his positivity.
Brendan is my rock, my hero, my soul mate.
My family check on me every day, they support me in every way possible, they raise my spirits on dark days. They make me laugh if I'm crying inside, they wrap me up in a cotton wool when I've given up and lost hope. They are my strength, my courage and my will to fight, I'm here because of them, not because I have to be but because I want to be.
Gastroparesis has taken so much from me, this tube and machine is the only thing stopping my organs from shutting down. My kidneys are not working how they should as I am malnourished, I'm losing my hair, eyebrows and eyelashes. I am nauseous 24/7 and spend 90% of my days vomiting. My body rejects most of the food, and the food that it stores, sits in my stomach rotting, causing constant food poisoning and vomiting can last for weeks.
Given that I am attached to this life saving machine 100% of the day, I have had to leave work, so it is safe to say the ladder to business manager has lost its runs. So how do we make ends meet when I am unable to work? I have been rejected for my claim for disability support pension, it has been a rough few years rely on alternate welfare payments. In addition to lack of recognition within the welfare system, medication for Gastroparesis in NSW is not part of the Pharmaceutical Benefits Scheme (PBS). In all other states in Australia, medication and lifesaving feeds for Gastroparesis suffers is part of the PBS, why is NSW different?
I need help, I'm begging for someone to help me raise awareness for this condition. This needs to recognition in the community, in hospitals and the government needs to stand up and take this seriously.
I need help, the NSW Government needs to change policy and make lifesaving feeds and medical supplies part of the Pharmaceutical Benefits Scheme for Gastroparesis sufferers. I am not asking for a hand out, I am not crowd funding, I am doing this for all current and future suffers. When we have medication on PBS and Gastroparesis part of the Disability Support Pension assessment process, funds will be put back into the pockets of the sufferers and that benefits ALL Gastroparesis sufferers.
SIGN MY PETITION to change the landscape for all Gastroparesis patients
xoxox Charmain
Fast forward to today........
That was before I was dealing with a debilitating incurable condition called Gastroparesis. This disease means that my digestion tract is paralysed for no reason, I can no longer process food from my esophagus to my bowel. I can no longer eat the foods I once loved and I can no longer drink my favourite drinks. I now am feed 24 hours a day 7 days a week, 365 days a year for the rest of my life via this tube attached to my face. My circumstances mean that my nasogastric tube is attached to a machine that is keeping me alive.
Prior to being diagnosed, I was seeing doctor after doctor after doctor, surgeons, specialists, I lost count around doctor #20. They all told me to go home, not worry, try to relax and all my symptoms would go away. Symptoms of chronic vomiting, nausea, severe abdominal pain, rapid heart rate, dizziness, major headaches, depression and severe weight loss. I couldn’t just relax and it did not just go away. To be told “not to worry” was not acceptable for me.
I did my research, every day to trying to find a possible solution, I requested test after test, and then I found a possible condition, I asked my specialist to run the specific test. Within two weeks it was found my intestines and stomach were strangling my heart and split my diaphragm. I required an urgent five hour surgery, if left undiagnosed it would have starved my stomach and intestines of blood, possibly leading to loosing vital organs or my life.
In 2015, I underwent an additional two operations, due to complications with this previous surgery. It is at this time, I could feel the blow of Gastroparesis. The vagus nerve controls the digestive tract, my vagus nerve was severely damaged and is no longer viable. This condition is incurable, 1 in 200,000 people are effected worldwide and it will last for my lifetime.
Socially, I hardly leave the house because this tube brings a lot of stares from the public, I have no confidence to face the world, but I am slowly making changes in this part of my life. My husband and family are a great support network.
The stares and comment are hard to handle, my husband Brendan and twin sister Rachel accompany me to the shops like a safety blanket. Often Brendan will do the shopping and everything to run the house hold while Rachel will take me to late night Kmart runs, when there is no one at the shops.
Brendan is amazing, He is there running me showers at 3am when I'm vomiting, when I can't get out of bed, He sets up my feeds at night and gets my hot water bottle ready every night to put on my tummy to try soothe the pain. He never complains, he never thinks of giving up on me, Brendan fights with me, he fights for me and he empowers me with his positivity.
Brendan is my rock, my hero, my soul mate.
My family check on me every day, they support me in every way possible, they raise my spirits on dark days. They make me laugh if I'm crying inside, they wrap me up in a cotton wool when I've given up and lost hope. They are my strength, my courage and my will to fight, I'm here because of them, not because I have to be but because I want to be.
Gastroparesis has taken so much from me, this tube and machine is the only thing stopping my organs from shutting down. My kidneys are not working how they should as I am malnourished, I'm losing my hair, eyebrows and eyelashes. I am nauseous 24/7 and spend 90% of my days vomiting. My body rejects most of the food, and the food that it stores, sits in my stomach rotting, causing constant food poisoning and vomiting can last for weeks.
Given that I am attached to this life saving machine 100% of the day, I have had to leave work, so it is safe to say the ladder to business manager has lost its runs. So how do we make ends meet when I am unable to work? I have been rejected for my claim for disability support pension, it has been a rough few years rely on alternate welfare payments. In addition to lack of recognition within the welfare system, medication for Gastroparesis in NSW is not part of the Pharmaceutical Benefits Scheme (PBS). In all other states in Australia, medication and lifesaving feeds for Gastroparesis suffers is part of the PBS, why is NSW different?
I need help, I'm begging for someone to help me raise awareness for this condition. This needs to recognition in the community, in hospitals and the government needs to stand up and take this seriously.
I need help, the NSW Government needs to change policy and make lifesaving feeds and medical supplies part of the Pharmaceutical Benefits Scheme for Gastroparesis sufferers. I am not asking for a hand out, I am not crowd funding, I am doing this for all current and future suffers. When we have medication on PBS and Gastroparesis part of the Disability Support Pension assessment process, funds will be put back into the pockets of the sufferers and that benefits ALL Gastroparesis sufferers.
SIGN MY PETITION to change the landscape for all Gastroparesis patients
xoxox Charmain