Find us on Google+ Gastroparesis: Gastroparesis Resources & Online Support Groups

Tuesday, December 11, 2012

Gastroparesis Resources & Online Support Groups

If you're like me, then you have a lot of questions about Gastroparesis. I wanted to put some resources on here for people who may need support groups for understanding, venting, emotional outlets, and to be here for each other. I recommend all of the groups down below.


If you know of more sources, please leave a comment with links.

I would love to spread them around to the fighters of GP that I've gotten close to recently.

There are several communities on Facebook that are full of helpful people and support. I have to say that I've been on the Gastroparesis yahoo group's mailing list for a while but I hardly use it. I mostly use Facebook for questions and support. If anyone uses any of the Yahoo groups, please let me know how they are and what you think.

No awareness, no funding, no research. Spread the word!





Facebook:

TATS FOR GASTROPARESIS. My friend Melissa runs this site and it takes a look at tattoos people have gotten to show they support Gastroparesis Awareness.

GP FIGHT - GASTROPARESIS. This page is run by my friend Melissa and highlights the struggle of fighting through gastroparesis.

THE GP FIGHT STORE. This is a page set up for the Gastroparesis Fight Store. It has lots of merchandise and the proceeds go to the fight against gastroparesis, because we need a cure.

GASTROPARESIS AWARENESS. This is my personal page. I've often believed that motivation, inspiration, and laughter will help with the chronic illness that we know today as Gastroparesis. My page is designed to promote awareness and understanding as well as offering encouragement and refuge to those who suffer from GP.

EMILY'S STOMACH. This is my personal page for Gastroparesis Awareness and motivational photos. Occasionally, we do receive questions, which we call upon the community to answer. www.twitter.com/emilysstomach on Twitter. No awareness, no research, no cure.


ONE MILLION LIKES FOR GASTROPARESIS, AWARENESS, RESEARCH, AND A CURE.
This group wants to give Gastroparesis a name, a face, and a loud voice! This disease needs to be well known, well heard, and well understood. There is no cure for Gastroparesis and with out raising awareness and funding, there never will be.

GASTROPARESIS PEN PAL OUTREACH. This is a group for all of us who are fighting Gastroparesis to come together and to find new friends to write to and keep in touch with in order to develop a support network. Having a great support network in Gastroparesis is important and writing is becoming a dying art through the mail.

FIGHTING GASTROPARESIS WITH HEALTH AND HAPPINESS (G)oodbye (P)udge! The purpose of this group is to provide POSITIVE and ENCOURAGING motivation to fellow GPer's who struggle with weight loss or just want to maintain their weight through a clean and healthy lifestyle.

GASTROPARESIS. This is a place to ask questions, receive advice, etc. GNE is an LLC, a for profit business for Gastroparesis. These aren't doctors but fighters of GP who may be able to answer your questions.

GREEN'S NOT EASY FAMILY. This is a support group for friends and family, people who take care of those of us with GP.

PEDIACTRIC GASTROPARESIS. This is a support group for those who have children with GP.

GASTROPARESIS AND ME. This is a soon to be nonprofit that helps spread awareness of Gastroparesis, work on legislation, and shares updated medical and research news!

GASTROPARESIS AND DIABETES SUPPORT GROUP. This is a group for those of us who have diabetes and also suffer from GP.

CHILDREN LIVING WITH GASTROPARESIS. This is an awareness page where selected parents/caregivers will blog about their child's journey living with Gastroparesis.

JOURNEY WITH GASTROPARESIS. Practicing a positive approach to feeling "full" through mindful insight, shared experiences and tips on living your best with GP. For more information about creating a brighter journey visit www.journeywithgp.com

PAGES OF POSITIVITY. Pages of Positivity is a project created in order to help people suffering from illness stay positive. They are in the process of becoming non-profit organization. For more information about their journals and staying positive, please visit: http://www.pagesofpositivity.com.

ONE MILLION LIKES FOR GASTROPARESIS AWARENESS, RESEARCH, AND CURES. This page was created to spread awareness about GP and educate others on what GP is and the lack of treatments available for it with today's modern medicine. There are five million people who suffer in silence with this debilitating illness, and we are advocates on their behalf.

LAUGHTER THROUGH GP. Laughter is the best medicine, so I will be serving up humor in additional to motivational pictures in order to help Gastroparesis members and caregivers a reason to laugh. I am the page creator and I'm also looking for admins. Just shoot me a message via Facebook if you would like to help out.

ADVENTURES WITH GASTROPARESIS. They say in their page about us section, "When Gastroparesis throws you lemons, make lemonade!" I haven't really read this page yet but it was suggested to me by another GP member. But, the more resources we have, the better we'll be! We're all on the same team against GP. And that alone, makes me extremely happy. You can also visit www.adventureswithgastroparesis.com.

GOT GUTS. Jaqueline and her friend started this page. She writes, "It is a lot of medical humor/disease awareness. With my recent diagnoses of Gp, maybe my friend and i could start up some gp memes."

MILLE'S GP FIGHT. Author who is educating others on what daily life is like with Gastroparesis through a fun/optimistic view.

MELISSA'S GP FIGHT MCELFRESH. She writes, "This is my page dedicated to helping my GP friends with support and information. As I always say, "We are in this together". I was dx with GP not too long ago, but am here to help you the best I can. It is scary and we want you to know that you are not alone!"





Facebook Groups:

GASTROPARESIS SUPPORT GROUP. This is a group that I help admin. It's an amazing group of people who do nothing but support each other through the good and bad times with GP.

LAUGHING THROUGH GASTROPARESIS. This group is for posting funny pictures, jokes, stories, and videos. It's to keep the chronically ill cheerful, which is important for their health.

GASTROPARESIS WARRIORS. This is my personal group. I wanted to create a closed group where we can share motivational pictures, ask questions, give people inspiration, and to help as many who are diagnosed with #gastroparesis as we can. I know that a lot of people are scared to ask questions on a public page - but I wanted this to be a safe place where no one will judge. Also, I love helping people and I want this group to be a safe space for those who need to seek refuge from their friends and family who may not understand what dealing with gastroparesis is like on a daily basis. Please spread the word about the group on your pages and groups - because we are truly Gastroparesis Warriors.


BLOGS FOR GASTROPARESIS.
This is a group specifically to share each other's blogs and discuss questions, answers, and taboo topics. We can also help peer review other blogs and give tips on blogging. Please add anyone you know who owns a blog and have them post their link here. A dedicated group with blog links will be easier to follow for most people.


GASTROPARESIS PEOPLE HELPING EACH OTHER.
The group description says, "We are here for each other. Whether it is to gain knowledge and information, venting, sharing stories, our GP "family" will be here for you. We are a very close knit bunch and there is alot of love here. This group started as a dream and became a reality. No fundraising requests within the group, as it is meant for emotional support and educational resources only."







Twitter:

LAUGHTER THRU GP. This twitter name @laughterthrugp will summarize the Gastroparesis Facebook pages that I admin, so that you can stay up to date with what is being posted.

GREEN'S NOT EASY WITH GP TWITTER FEED. Twitter @gnewithgp will help you keep up to date with the Facebook page information. You can also email them at gnewithgp@gmail.com.

GASTROPARESIS AND ME. This twitter name @GPandMEglobal will help you keep up to date with the Facebook Page. Tanya is the President of the group and is in the process of making her own nonprofit. I just became the new admin for this account and Facebook. LaShelle is too.



Google Plus:

GASTROPARESIS AWARENESS. This is a brand new community on G+. It's a sister to the Facebook group, Gastroparesis. I am one of the moderators but I only have four people who have joined so far. Please join the group so that we can spread the word about Gastroparesis. No awareness, no research, no cure.


Tumblr:

EMILY'S STOMACH. This is a Tumblr dedicated to random gastroparesis information and inspiring photos found on the internet in my spare time. It will also share some of my struggles, too.


Pinterest:

GASTROPARESIS AWARENESS THROUGH PICTURES. The goal is to spread the word about Gastroparesis so that we can get funding for research. Gastroparesis is a debilitating stomach disease that literally means paralysis of the stomach. One of every 62 people in the united states alone (about 5 Million Americans) have been diagnosed with Gastroparesis.


Yahoo Groups:

GASTROPARESIS. This is a mailing list for those of us who suffer from GP and need support from those who understand chronic pain and illness. This group has the most members on Yahoo Groups featuring Gastroparesis.

PEDIATRIC GASTROPARESIS SUPPORT GROUP. This, again, is for the children and parents who deal with GP.

GASTROPARESIS PROBLEMS. This is another mailing list about problems with GP.

GASTROPARESIS SUPPORT. This is a mailing list for those of us who suffer from GP and need support from those who understand chronic pain and illness.

YOUNG PEOPLE WITH GASTROPARESIS. This group is for younger fighters who may have questions regarding GP.

GASTROPARESIS PATIENT'S GROUP. A group for patients of GP who get together and discuss the disease.



Blogs:

IT'S NOT EASY BEING GREEN. This blog was created by the founder of the Facebook Page, "It's Not Easy Being Green." It is designed to help those with Gastroparesis cope with the daily struggles of living with an invisible illness.

JOURNEY WITH GASTROPARESIS. This blog was designed to practice a positive approach to feeling "full" through mindful insight, shared experiences and tips on living your best with GP.

GASTROPARESIS AND ME. This is for all of those who are inflicted with, or know someone surviving with Gastroparesis. The word "ME" means "EVERYONE". If you are living with something that is torturing you, but no one seems to know what is going on, it makes you feel like, "Is this just me?". That is why it is important we all work together, in the US and abroad, to help each other live and find a cure. Help work on this site, hold an Event, and other collaborative efforts of support.

MELISSA'S GP FIGHT. This is a blog by one of my GP friends. She is an amazing writer and GP advocate. She also has a Facebook page that is linked above. She writes, "In 2012 dx with GP. Here to do what I can to spread hope, awareness and current GP treatments. Let's see how far we can spread GP Education to ensure a better quality of life (cure would be better) for us all. And don't forget the impact on our loved one's and caregivers, they need support too!"

LIFE WITH DIABETIC GASTROPARESIS. Gastroparesis occurs more often in type 1 diabetics, with the occasional type 2 diabetic getting it. Gastroparesis can also occur in people who do not have diabetes, which is called Idiopathic Gastroparesis. Most have had diabetes for more then 10 years and might have other complications of diabetes as well. Diabetes is the leading cause of Gastroparesis, accounting for about one-third of all cases. This blog will help you with that journey.

DANCING IN THE RAIN. This is a blog created by one of my good friends, Carrie. It started off as a rheumatoid arthritis blog but has evolved into her journey with Gastroparesis when she was diagnosed in October of 2012. Updates to come but a great resource to see what living with both diagnoses is like.

GASTROPARESIS UP CLOSE AND PERSONAL. This is my friend Melony's struggle and journey with Gastroparesis. She describes it as, "I am a 26 year old woman and mother. I have had Gastroparesis for years and am fighting to raise awareness for us. I decided to start a blog to get my feelings and experiences out there in hopes I can help someone else going threw this. You are never alone!"

PATTY'S GASTROPARESIS. This is a personal blog started by Patty that documents her struggles with Gastroparesis. Give it a read, she writes great entries!

ALLIE'S GASTROPARESIS JOURNEY BLOG. This blog tells you about Allie and her struggle. She even has wrist bands you can order in support of her fight. This was also suggested to me by a fellow GPer.

SHERRY'S GASTROPARESIS BLOG. This is Sherry's personal struggle with Gastroparesis. Please read her blog and show her some support. It's hard to live with GP. I think that our readers should have as MANY resources about GP at their disposal. Because, we are all in this fight to help each other.

SMILING WITH GASTROPARESIS. This blog is written by a seventeen year old girl who lives in London. She has been diagnosed with Severe Gastroparesis, Lupus and Arthralgia. This is her blog to document her journey.

UNDIGESTED CRUD. This is a blog started by KariLee to highlight her journey with Gastroparesis. She writes, "Welcome! Find a seat, make yourself at home and bare with me! I'm new at this and I'm a little weird and crazy. I'm, a sister, daughter, cousin, and fiance! I live with my amazing, "Other Half" (OH) also know as my fiance, and my two pretty cute cats! I have a crazy obsession with my BMW. And I have the biggest, craziest love hate relationship with food! Thanks for stopping by! Be nice, don't judge me, know that I can have a bad mouth, and please, please don't correct my insane amount of spelling and grammar mistakes!"

PROVOKING BLISS. This is a blog started my Lauren. She writes, "I try to be as upbeat and positive as possible. I also tend not to take any strong stances on subjects, I believe what I believe and I respect others beliefs as well." Her blog details her journey through Gastroparesis and is a great read.

GASTROPARESIS AND ME BY JEANNE. This is a blog written by Jeanne. It chronicles her personal journey with Gastroparesis and she does have a tube, so she could answer questions for you about that if you're interested. When she was asked why the blog, she responded with, "I find myself sitting in front of social media sites wanting to say how my day went. I type my little fingers to the bone then I think that no one here would want to know all this medical stuff. I don’t think anyone who doesn’t have motility issues would understand the weird world we live in. So, I decided to write here. I can invite friends and family and welcome anyone who might like to read this. I may never have a reader, but I can distress here. If I DO happen to have a reader, then maybe somehow I have helped just that one soul."






Youtube:

GASTROPARESIS AWARENESS VIDEO. Look for my picture and the members of the Green's not Easy Facebook Page in the video. It was made by the page creator of the Green's Not Easy Facebook Page.

BARE YOUR BELLY PROJECT. Fat, bloated, scarred, boney, thin, discolored, abused, beat up, tubed, and painful bellies are not something we should hide away under layers of fabric. People can’t look at our faces and see what Gastroparesis has done to us. How Gastroparesis has changed the way we live our lives, or even what it’s taken away from us. We can’t expect others to know how it feels, or understand our battles, or even revel in our daily victories if we never get off the bench to show them what it means to have Gastroparesis. Would you have believed it yourself if you had never had it or never taken the time to get to know someone who did? It’s time to let go of our reservations of “baring all”. We live with Gastroparesis on a daily basis; we fight for our lives every day by rolling out of bed and touching our toes to the floor for another day of struggling to feed our bodies to stay alive. Every weight gained or weight lost to some GPers is either a triumph or a defeat. If cancer survivors can bare their scarred and broken bodies, we can too. Each and every one of us is beautiful, our ability to wake up and face another day… is nothing short of miraculous strength. YOU HAVE A RIGHT to show off your strength! Bare your scars! Bare your belly for Gastroparesis!~ LaShelle Shuman (G.N.E page creator).

GASTROPARESIS - CONSTANT NAUSEA BY THE DOCTOR. Stephanie (Journey with Gastroparesis) writes, "Check out this informative video on gastroparesis. It was aired on a live news program called Call the Doctor. There are 3 GI specialists who discuss GP, including interesting statistics, diagnosis and treatment options, as well as a guest patient with GP. 1st half is a discussion and review, 2nd half has live call-ins for Q & A."

DIGESTIVE TRACT BOOT CAMP. A spoof on a boot camp. It's a joke that will make you smile!

ALLIE'S TUMMY FILES. A good resource for learning things like how to turn an infinity bag into a drain bag.



Art & Gastroparesis Inspired Jewelry:

RARE ARTISTS GALLERY. EveryLife's Art Contest for Rare Diseases 2013 is accepting submissions! www.RareArtist.org The Art Contest was established to empower those affected by rare diseases to express their unique power through art. Please share the invitation, & share your art! This image, "Trusting Hands", won a special artistic merit award in our 2011 contest, by Gastroparesis patient Shelley Bertrand. RareArtist.org was created for artists affected by a rare disease. The EveryLife Foundation for Rare Diseases received many exceptional works of art during our inaugural EveryLife Art Contest which inspired us to create a venue to display this art. It is intended to showcase the Artwork and the Artist, in order to bring awareness to the rare disease community. There are almost 7,000 rare diseases that affect more than 25 million Americans.


NERDY GIRL CREATIONS ON ETSY. This is a Green's Not Easy Member's friend who makes jewelry. She's amazingly talented and decided to help further our cause for awareness by making GP themed jewelry. An example of her work is below:


JUST BREATHE JEWELRY. This is a collection of handmade, from scratch, unique and chic jewelry, created in part to donate to gastroparesis research! Use Coupon Code BLYSSBREATHEXX for free shipping! As always, $1.00 of every purchase goes to the GPD Foundation for a cure for gastroparesis! An example of her work is below:


COTTON'S CUSTOM CREATIONS. Cotton's Custom Creations originated due to the need for more awareness of the disease, GASTROPARESIS. Owner, Jonny, suffers from this disease which literally means stomach paralysis. As Jonny's partner - in business and in life - Lora began designing/creating jewelry for family and friends to help bring attention to the disease. As her designs were seen, more and more folks asked about them, wanting them for themselves, thus Cotton's Custom Creations was born. All items are created through a collaboration of Lora and Jonny's ideas. Their intent is to get this business up and running so that they can donate a portion of the proceeds to research for the treatment/cure of this insidious disease. An example of her work is below:


Websites:

GP WARRIORS. This website is to promote education and spread awareness about Gastroparesis. The website states, "We need to join together to help spread word of this illness to help generate support and awareness. I am a warrior, and I continue to try and live a positive and happy life. With the support of my family, friends, and GP family I am able to do this. I’m blessed to have such a strong support system! It is now my ULTIMATE goal to educate others on this illness, and support those around me who are suffering from this life changing disease. I am here for support, friendship, and most of all to spread awareness: so that one day we can find a cure."

YOU TOTALLY AMAZING. This website is for meal replacement, health and fitness with GP.

GREEN'S NOT EASY. This is a website that LaShelle has created, that goes along in addition to the Facebook Group. Gastroparesis is a condition that reduces the ability of the stomach to empty its contents. It does not involve a blockage (obstruction). One of every sixty-two people in the United States alone (about five million Americans) have been diagnosed with Gastroparesis or Digestive Tract Paralysis. GNE is a brand new LLC, a for profit business for GP.

HELP GASTROPARESIS. "Our goal at Help Gastroparesis is to keep you informed and have a safe place where you can come, learn about your options, and talk with other patients."

GASTROPARESIS AND ME. Gastroparesis and ME, LLC, whose Fiscal Sponsor is Teen Moms Fresh Start, is for all of those who are inflicted with, or know someone surviving with Gastroparesis. The word "ME" means "EVERYONE". If you are living with something that is torturing you, but no one seems to know what is going on, it makes you feel like, "Is this just me?". That is why it is important we all work together, in the US and abroad, to help each other live and find a cure. They try and help people who can't afford treatment, hold fundraising projects, and other collaborative efforts of support. I am proud to say that I'm help them with their media site marketing.

Forums:

FORUM FOR GREEN'S NOT EASY. This forum was created for in dept discussions, questions, answers, and sharing images, URLs, and knowledge with other members. It's a place for all of our members on the Gastroparesis Facebook Page to come together to support each other and comment on a variety of topics.