When I was first diagnosed I was hopeful

Christine Savoy-Johnson

I have this thing, it’s called gastroparesis. When I was first diagnosed I was hopeful. I set my sights on the road to my inevitable recovery; because “I am only 30ish, it’s not like I’m going to die or anything ! No, I am going to beat this, nay not I, we were going to beat it. You see 8 years ago when I was diagnosed, I had a tribe. Aaahhh yes, my tribe headed up by the linked arms and the strong footfalls of my parents, my husband, my ex husband and my children.

Unfortunately what no one tells you is this illness doesn’t just affect you only physiologically, but it shakes the very foundation upon which, if you like me, you thought was indestructible. No, this illness takes away your ability to go out to dance at the club or bar……because, well, no energy. It takes away your ability to take ridiculously named, but awesome looking and tasting shots……because, ugh, too nauseous. You have to cancel plans at the last minute… ..well, I’m just in too much pain.

So as I wigggled out of my old super social life into my new less than one; I noticed something, I was suddenly able to feel the wind at my back more freely, I whipped my head around to query my tribe. It was then that I realized several people had fallen away; not just for a pit stop to grab a water and return or sit briefly upon a rock to catch their breath, no they had fallen away and not returned. I blamed myself. Well if you hadn’t missed that birthday party or our the big labor day shindig, then so in so and you know who would still be here. You see this illness tries its best to wrap itself around your body and your life and squeeze every part of your status quo into hospitals, pills, countless Doctors, surgeons, specialists, and diagnostic testing. This illness shows you how humans truly behave, especially the ones in your tribe.

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Fighting for my life while being treated like a guinea pig

I am a 41 year old wife and mother of 3. I was diagnosed with Gastroparesis 6 years ago. I have had 27 surgeries due to my illness. I have been on Social Security Disability for 4 years. I was tube fed for 3 years and have recently just had to have an NJ tube inserted . I am fighting for my life while being treated like a guinea pig and yet there is no hope around this disease. While I was tube fed I had to have 15 surgeries to either change feeding tubes or because of complications from the tubes themselves. I honestly felt like the feeding tubes were going to kill me faster than my actual disease. I made the choice to have my feeding tubes removed. Now social security is saying I am basically cured because I made the choice to have the tubes removed. I am on the verge of loosing my disability benefits and my medicare because of this and yet I just had to have a NJ tube inserted because I was unable to maintain weight and nutrition after my last surgery in May which replaced my 3rd Gastric pacemaker. I cannot work and I am now tube fed again. Life is traumatic and hard. I now have a home health nurse and dietitian along with 6 other specialists and yet I am nowhere near cured or healthy. Depression has overwhelmed my mind and body as I have tried to navigate through this disease with what seems like no help or support from my doctors or the government. Please help me!

Submitted by:  Tyanna Sanders

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Support H.R. 3396

Support H.R. 3396
Help us get our legislators to co-sponsor H.R. 3396! This bill is critical to the Gastroparesis community getting much needed funding for research for a cure. Fill out this form and we will merge it with our template and hand deliver it to your legislators.
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Submit Your Story

Submit My Story
Do you want to share your story? We invite you to fill out this form and let others know how Gastroparesis has affected your daily life.
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Green Candles

I no longer have unique or special words to announce passings in our #Gastroparesis community. I have offered prayers and condolences so many times that I cannot find a new way to express my sorrow. I want to curl up and hide somewhere on the days I must make these posts.

This grief and these deaths, this fear that it will be one of my very close friends today or that perhaps it will soon be me, this love I have for all those who have passed away and for all those who very well could, this is why I advocate. These people, who fight so hard to stay alive and to remain upbeat, to live their lives as if the threat of death did not hang just above them – they are why I cannot remain silent. It is because of the many souls in our GP community who come into our groups every single day and do their best to spread cheer, offer advice and information, and speak kind words to those in dire need that I do not sit and stew in my grief. And it is for those poor, weary, struggling friends who are in physical agony, who are fighting alone with no one to help them or comfort them, who can no longer afford to care for themselves and their families because of their hopeless financial situations – the mounting medical bills and unemployment, that I pull out my soapbox and encourage others to do the same.

I hate these green candles for the deaths they proclaim, but I love them for the beautiful souls they represent. These are not people who “gave up” or “lost” the fight. Nothing could be further from the truth. No, they battled as hard and as long as they could against a vicious illness that robbed them of everything and against which they had few weapons. The flame on these candles has not been snuffed out; it forever burns to symbolize the endless effort these individuals put forth to persevere despite all the hardships. These are not people who failed; they gave it their all and fought to their last breath. They inspire us and compel us to continue to wage our own wars against the cruel illness that ravages our bodies.

They remind us that even in the midst of pain, grief, and looming death, life is precious, and we must live it to the fullest because we are not guaranteed a single day. They implore us to believe that we did nothing to deserve this affliction, that we are not worthless, or valueless, or insignificant, or “lesser” because we fell ill, and that our lives MATTER. We are ALL fighters, and we are doing the very best we can to survive.

But we merit so much more than mere subsistence. Indeed, our goal is to flourish. We desire and warrant treatments that allow us to thrive. We seek the kind of support and respect, treatment and conditions, and attention to our needs that will allow us to genuinely LIVE our lives rather than spend them in hospital beds and dark lonely rooms, struggling to meet basic needs, consumed with pain and fear. We deserve a life free from the limitations imposed by Gastroparesis.

And so, I advocate – day after day, all day long, without ceasing. I post on my personal pages, in groups, all over social media, and on websites. I write articles and poems, create memes and graphics, establish and administer groups, and invite you to “green” events. It is my duty to myself and to all the members of this community to do so. I cannot look away and pretend that all is well. I cannot ignore the pain, loneliness, hopelessness, despair, and death that surround me – and I hope that none of you can either.

I ask you all – members and non-members of the Gastroparesis community alike – to please help us in our efforts to find an end to this life-altering, destructive, and often deadly disease. I ask you to sign our petitions, support our bills and proclamations, send letters to your congressional representatives, and light your green candles for those who have fallen. Educate your family, your friends, your doctors, the media, and the public. Join our events and shout our pleas from the rooftops and streets if necessary. DEMAND better treatments and a cure for those in the GP community.

Please do not avert your glance. Do not ignore our pleas. There is no one else – only you. We will not be magically cured or relieved of our burdens. We need YOUR help – every single one of you, ill or healthy. We cannot afford to sit back, back down, remain complacent or apathetic, or cease our awareness efforts. Our very lives depend on it. How many more candles can we bear?

#CureGP #RealGP

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