I’ve accepted that my journey is here

Amanda Hall
Amanda Hall

As this year comes to a close i am truly disheartened by the fact that my body is crippling and dying and no one (not me, my parents, the doctors) can change this for me. I have fought my hardest fight for 6 years since my life was taken from me by Gastroparesis, Sepsis, and now Dysautonomia. I have learned more than i could ever possibly imagine.

That being said, I have accepted that my journey is here. I spent this year feeling the emotions of these diseases so I could feel the emotions of everything that surrounded me. I coped by being so hard & emotionless for 5 years because i would have died otherwise.

This year has been a year of unexplainable growth and i am so content in knowing that although things are shutting down, my soul is flourishing and very much alive. Although my body may show chaos, inside it feels peace. I live in an aura of life and death and it has been damn hard to get here… but my life has never been more beautiful. I have never been full of so much love, blessings, acceptance, and nonjudgment.

When I talk about it, it sounds absolutely scary. But I am not scared of anything anymore. I have prioritized what is important in my life and every day, every minute, I am grateful to make a tiny step toward that unconditional love and acceptance- for myself and others. I have no hate in my heart, I am genuinely kind to everyone, and my spirit is something that is out of this world.

As I continue to put one foot in front of the other every minute of every day, I am reminded that I am here for a purpose. I have found love in my soulmate, Eric Scott, and each day I feel like I am the luckiest person in the world. I’m so glad I let my walls down and trusted that things were going to start fitting perfectly beautiful in this life if I just continued to stay on my path. It took days, so many days. My body and mind are beyond tired, but I truly feel like i have finally made it. My soulmates Paris and Brittany have taught me honesty, character, strength, and pride from both me to them and them to me. My brother is a father and as I watch them thru my own lens, i am so happy. The life they have is full of beauty and God am I blessed to be a part of it. My parents have given their all to me in every aspect and I cant help but feel so incredibly loved and supported- something i realize most people don’t have.

One day this disease will take me from this physical world, but my determination to live my best, most positive and abundantly grateful life will leave the most beautiful legacy on this world and the people that have crossed my path in the past 6 years, especially in the past 6 months. I chose happiness in a world of overwhelming sadness and I practiced being kind to myself every second of everyday. I chose to take the overwhelming rawness of this disease to put myself in the best spot for my mind, soul and body to continue along this journey until my time comes.

I have loved hard, I have been loved harder and I hope each person that has been a part of my journey feels the gratitude and embrace that I have tried so hard to give. Each day I step outside I see beauty. there is no more pain. I am eternally grateful for every single piece of my life. With the cards I have been dealt, I have played the winning hand. I am not sure what ‘enlightenment’ is supposed to feel like, but I truly believe that is my calling and I believe that each day, each minute of my life is making this beautiful dream a beautiful reality.❤

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PEG-J Which Is Used For Medication And Draining Only

Sarah Bowker
Sarah Bowker

? Hi I’m Sarah and I’m 35. I live in the UK. I became ill in 2013 and was diagnosed with Gastroparesis in 2015. I have a PEGJ which is used for medication and draining only, as unfortunately I failed on the enteral feed and I am fed by tpn via my broviac line. Unfortunately I’ve been told I’m not a candidate for a pace maker, due to the Gastroparesis effecting my bowel also. As well as GP I also have a number of other chronic illnesses which also makes it hard to deal with. It has and is an emotional battle and I have my ups and downs. In and out of hospital with long admissions. But it has made me stronger and I won’t give up and let this or should I say these illnesses win! 
# Gastroparesis Warrior ???

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I Have Suffered From Cyclic Vomiting Syndrome

Eshanya Walls

I was diagnosed 1 year and 5 months ago but believe my GP started developing 3 months prior to diagnosis. 

I have suffered from Cyclic Vomiting Syndrome for over 25 years. 

I thought for sure with the GP diagnosis I would finally be heard and get some treatment and attention to my gut health. 

Although, CVS is rare and I never received adequate treatment I had well phases. With GP I found I was more isolated and basically left for dead. 

I have many diagnosis but I truly believe once my GI system went out everything was set off and flared. 

I am here to be heard and fight with the best. 

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I Had Chicken Pox During My 15th Week Of Pregnancy

Holly Marenic was born 6/12/96 and she died 5/8/17. Holly’s story actually begins before 6/12/96. 

I had chicken pox during my 15th week of pregnancy, giving Holly the chicken pox at 16 weeks gestation, during the time her brain stem was developing. The varicella virus attacked and damaged her brain stem and the Vagus nerve was damaged. This is important to know because we now know that trauma/damage to the Vagus nerve is one of the onsets of Gastroparesis.

Holly suffered with GI issues her whole life, most of which were unexplainable. Sharp shooting pains, unable to tolerate her feedings, vomiting and nausea, constipation or diarrhea. She had emergency surgery Christmas Eve of 2003 for an interception. She was on TPN three different times due to her in tolerance of her feedings. The damage to Holly’s Vagus nerve also caused issues
with her ability to swallow. So the almost constant vomiting caused chronic aspiration pneumonias.

 

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Most ERs We Have Been To Do Not Even Know What GP Is

First off, seems like most ERs we have been to do not even know what GP is.

2nd off, seems like if you are vomiting worse than usual, lethargic, or can’t even hold down water and you know it’s not your GP acting up, the ER will automatically brush every symptom as ITS JUST GP and not do anything. 

 

Seems like every ER is afraid to touch a child that has GP. Seems like many do not even know what safe meds are and aren’t for GP. (My son was given meds for a virus the other day meanwhile his GI said it was one of the worst meds they can give GP person)

I was told by a doctor that i must have been doing drugs when I was pregnant because that is the only reason my son must have GP and rely on a feeding tube to survive. 

 
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