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Wednesday, December 26, 2012

The Holiday Aftermath

My husband and I went to Augusta this weekend to visit family. I ended up having a bad GP flare up and slept most of it off, so I didn't get to visit with people like I wanted to - which made me feel like a horrible friend. But, I didn't get sick in the car! That was a good thing. I brought my bucket with me just in case but we also brought my cats and they wanted my bucket.

I got to see my niece open up all of her presents. She kept saying, "Wow" after each present. She really liked the small fake smart phone I got her that had a picture of an owl talking to her telling her which buttons to press. I got her a dog on a string to pull around. She couldn't quite understand the concept, so she picked up the entire thing and carried it around!

I got to spend some time with my mom, my youngest sister, and my niece. Then, I went over and stayed/spent time with my mother-in-law and my sister-in-law. It was just nice to spend some time with everyone. My phone died, and guess who didn't remember to bring her phone charger? Guess who had a charger in the car that only charged while the car was on? *facepalm*

We came back to our house on Christmas Eve and had Christmas with one of my best friends and one of my fraternity brothers. I think they loved the presents we picked out for them. I got a copy of River Song's journal, which makes me very happy. I'm going to keep my GP musings in there when I'm not close to my laptop.

Christmas Day was great. We went to one of my best friend's house for Christmas dinner. I got to see two of my good friends who have since moved to different states, so it was great to see them. I ate a tiny bit of turkey, dressing, a bit of mashed potatoes, and two slices of homemade apple pie (one of my weaknesses but it was delicious). I knew I shouldn't have eaten it but it's hard for me to give up apple pie. Well, I'm paying for eating what I wanted to last night.

On a side note, my brother and his girlfriend came over and spent some time with us and we exchanged gifts. Now, we have two roomies left to exchange gifts with and that will be the end of Christmas at this house.

I spent all night pretty much vomiting up everything I ate. My stomach is spasming and contracting and it feels awful. Have you ever been so hungry that you've gotten cramps? Now, imagine those cramps plus someone sucker punching you in the gut and/or someone hitting a line drive into your stomach. I took a pain pill the doctor gave me (which I try to use sparingly because it causes gastric delays) and it's not even BEGINNING to touch the pain. It's my own fault but it was worth it. My friends made wonderful food and I was able to spend some time with them. I had to leave early so that I wouldn't get sick in front of them. Because when I start vomiting, it's hard to stop until all of the food/liquid is gone.

Well, I am going to go take more phenergan and bentyl. Hopefully, that will cut back the spasming and cramps. My throat is swollen from vomiting. It's like strep throat, I can barely swallow anything. It might be best if I could just go back to sleep.

Wednesday, December 19, 2012

Update from this Weekend to Today

I woke up this morning with horrible stomach pains. I started crying. Then, the vomiting started, which I'm glad I had a bucket beside the bed. I just feel miserable but let me catch you up on my weekend.

This past weekend, I had a Leadership Retreat with my fraternity. It's a tradition to have one of these, in the woods off of the grid, to bond together. I was quite proud of myself for surviving the car trip without vomiting in front of my friends, although I loaded up on all on of my medication (which means I couldn't drive). I got to the cabin and picked a bunk close to the restroom. I made sure to bunk with my brothers who wouldn't mind vomiting. I brought a bag of baby food for eating.

While talking to one of my little brothers, I vomited in my mouth. But, I was able to swallow it down, because I was no where near my bucket or the restroom. My little looked at me, knowing what I was doing, and fist bumped me for not getting sick on the floor. She knows how bad I feel but my brothers feel bad that they can't help me. I was amused by the fist bump though. That's not the first time that I've swallowed vomit down. I did that in the car yesterday too. My throat is sore and burnt from all of the vomiting.

Anyway, I actually got sleep on the trip. I don't know if it was because I was in the woods away from electronic devices or what, but I actually got some sleep. Usually, I'm a light sleeper but I didn't hear anything. When I woke up, I felt bad, because apparently, I was snoring. That ran some of my brothers out of the room. I apologized but they were just so happy that I finally was able to sleep that they didn't care. I have really nice brothers.

I ate some lentils during the retreat because I thought they might stay down. I think I ended up vomiting four to six times during the retreat. I wanted to take a shower, because that always makes me feel somewhat better, but it was too cold for me to stand in the shower. The ride back wasn't too bad, I didn't get sick because I loaded up on phenergan and my other medications.

I talked to my doctor's nurse yesterday because I was tired of not being able to sleep. My stomach keeps me up by vomiting all night. The doctor called me in some Ambien to help me sleep and told me he was following up with the Mayo Clinic because they should have scheduled me by now. He's sending me to the Mayo Clinic in Jacksonville, FL.

Honestly, I just want some kind of relief without vomiting. I don't like carrying a bucket around or embarrassing myself in front of my friends, even though they understand. I can't even do anything simple like going to someone's house to hang out because I spend most of the time in the restroom. This is just no way to live. I'm eating baby food but that's hit or miss with my stomach too.

So, I'm waiting patiently to hear back about the Mayo Clinic. If I don't hear back today, I'm going to call both my doctor and the Mayo Clinic tomorrow. I need some sort of relief. Until then, I'm going to take my medication and hope that one day, food will be in pill form.


Something did make me laugh yesterday. Every time I hear about the Mayo Clinic, I think about the scene from Airplane:


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.




Please note that this list is constantly updated, so that I have a full list of active groups. 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 Pages:


GASTROPARESIS - 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.

GASTROPARESIS: MY LIFE WITHOUT A STOMACH. My friend Denise started this page because she wanted a page for those who do not have stomachs anymore, due to surgeries, to come together and find support. Additionally, she created it for the people who are considering the surgery so that they can ask questions and make informed decisions.

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.

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.

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.

HUMOR AND HEALING. This group is about sharing uplifting and funny things to help take your mind off of issues with Gastroparesis.

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.

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 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!

GPD AWARENESS WARRIOR. The page's description reads as such, "My mission is to share my story with members of social media and more importantly, the community of GP. I will always continue to further my own knowledge and research in order to educate, empower, and encourage others who suffer the same ill fated disease that I do."

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

MY CHRONIC ILLNESS. Her about statement reads, "After becoming chronically ill at the ripe age of 22, and having my life as I knew it completely taken from me, I was determined to reach out to others in my position. I aim to inspire others with my can-do attitude and empathy. I make absolutely no profit out of running this page. I don’t believe those with chronic illnesses should be exploited by filling the page full of ads. Please feel free to tag your friends in the posts, and invite them to like the page. Trolling or harassing others is not allowed and will be deleted immediately. If you know the artist of a post, please do NOT hesitate to let me know. I grab most of my stuff off of pinterest or tumblr and many things are not credited. I simply don’t have the energy to reverse search every photo I post in all honesty. If your photo was posted here, please let me know if you want it removed via PM. I do not share gofundme’s or anything similar looking for money. But I am all for spreading research/studies; PM me and we can talk. Information on this page or in PM should not be taken as a doctors advice. Always talk to your doctor before making changes to your lifestyle. This is only a guide. If you are in crisis, please call the emergency number in your local area."


NOW YOU SEE US. Their description says, "To create the ysuNetwork, uniting and empowering people with Ehlers-Danlos Syndrome to create the changes we so urgently need. YouSeeUs is a new Ehlers-Danlos campaign and network. The Behind-The-Screen Team are currently anonymous, and working with the online ysuTribe."


MEDICINE X. We believe all patients should feel informed and empowered – in order to become truly engaged in their personal and medical decision making. This is why Medicine X was created.


CHRONIC ILLNESS WARRIORS COW. This is a page, according to the page owner, where people with Chronic Illnesses can come to vent, ask questions, and get support for their chronic illness. a



THE GASTRO MOVEMENT.The pages says, "Find valuable information here on Gastrointestinal issues and disorders. Raising awareness one Spoon at a time!"


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

JENNIFER'S GP HOUSE, LOUISVILLE KY (SUPPORT GROUP). Jennifer’s GP House, will help patients(families) that travel into Louisville, Kentucky from all over the world to be treated for GP (Gastroparesis) issues. We would like to shuttle them to and from their appointments and make sure that they have room and board free of charge, while staying in Louisville. Jennifer’s GP House, also will raise awareness i.e. community education for this condition in Kentucky.

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."

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!"

LIVING WITH GASTROPARESIS AND EHLERS-DANLOS SYNDROME. The About Description reads, "Trying to raise awareness of Gastroparesis and Ehlers-Danlos Syndrome. My blog is a personal record of life with these issues and a place for people to share their stories and experiences. Please support this worthy cause x."

LIVING WITH GASTROPARESIS. "I have suffered the symptoms of gastroparesis for many years. When I first got diagnosed, I wanted to know all possible treatments and the progression of treatments if one of them failed. I also wanted to know, from a patient’s point of view, how all the processes worked, how it would feel and what happens during all types of treatment. Through this fan page and my website I offer just that – personal experiences with different treatments for my symptoms of GP as it progressed to what it is today. It is not meant to be medical advice; always consult your doctor when you experience symptoms or decide on treatments."

GIFT. The About Section reads, "Gastroparesis & Intesinal Failure Trust (GIFT). A non profit organisation[sic] for support in dealing with the effects of Gastroparesis. Created by patients...for patients!"

LUCY'S LIGHT UK. This is her About Section, "Welcome to Lucy’s Light. I’m Lucy Watts MBE and this is the Facebook page to my blog of the same name, and just a general place where I put updates about my life and my work. As you know I’m Lucy and I am 23 years old. I have a number of complex, life-limiting conditions which are: a neuromuscular disorder (currently undiagnosed), Ehlers-Danlos Syndrome, Autonomic Neuropathy, Chronic Intestinal Pseudo Obstruction, type 3 Intestinal Failure, neurogenic Bladder Failure, Kyphoscoliosis, Osteoporosis, severe spinal degeneration, mild Restrictive Lung Disease and metabolic and immunological problems. They mean I am fed through a line into my heart, intravenous feeding called TPN, as well as dependent on intravenous fluids and intravenous medication, resulting in me being hooked up to drips at minimum 21 hours out of every 24. I also have a tube which drains my stomach, as well as an Ileostomy and Urostomy. I am wheelchair bound, but still forced to spend a lot of time in bed. My conditions will shorten my lifespan and so every day is a blessing. However, I have never let my conditions stop me. I do a lot of charity work, currently holding positions within seven charities, and working with many others on a one-off or semi-regular basis. I love my ‘job’, it fills up my days - I am not good at saying no so I take on far too much - but it’s part of my coping mechanism, because if I am busy working, my mind is taken off the pain and off the fears and worries about the future. I want to make a difference and to improve lives for others, and I am so grateful for all the opportunities I have been given that allow me to do this. For my charity work I was appointed MBE in the 2016 New Years Honours for services to young people with disabilities. A huge honour to be bestowed on someone; let alone someone of only 22 as I was when I received the Honour. I have a wonderful Assistance Dog called Molly, a Working Cocker Spaniel, who was trained with help from Dog Assistance in Disability (Dog A.I.D.). She was my pet first, but Dog A.I.D. helped me to train her and she qualified as my Assistance Dog on the 6th September 2016, meaning she can come everywhere with me and meaning we gained her posh working jacket and our ADUK ID booklet. Molly is my life, my best friend and my carer on four legs. You can read more about her on her own blog http://www.facebook.com/MollyDogWithABlog. I hope you will continue to follow my journey and my work, thank you for your support. I do public speaking, so if you would like to book me for a speech, or have any other projects that you would like my support with, please email me lucyalexandriawatts@hotmail.co.uk."

THE COMPANY INSPIRE. "We are the leading healthcare social network, with a mission to accelerate medical progress through a world of connected patients."

WFPB FAMILY LIFE. "Plant powered family adventures, budget travels, healthy recipes, tips and tricks on balancing parenting/health/life/diet/chronic illness/zero waste." Their contact information is:
wfpbfamilylife@gmail.com and http://www.wfpbfamilylife.wordpress.com. Their Facebook page is really helpful, and has great information for those with chronic illnesses who have travel concerns.




Facebook Groups:

STRONGER THAN GASTROPARESIS. This is a group that I started that is a bit smaller than other gastroparesis groups, so it's a bit more intimate. It is for those who need support for gastroparesis and need a place to vent, ask questions, post motivational/inspirational images, and to just have a place to feel safe posting.

GASTROPARESIS AND CYBER BULLYING. This is a group I have started so that people in the Gastroparesis community can come together and talk about ideas to help people who are being bullied in the community. Most people are scared to speak up about it, for fear of retaliation, and Facebook has not acknowledged any reporting of these people causing issues. People have committed suicide over cyber bullying. You never know how you will effect a person with your words. Words can hurt, and hurt much deeper than you would think. I have been a victim of it and it was horrible for me. I withstood it for eight months and had panic attacks logging into Facebook over it, but kept logging in and posting awareness for this illness. I wanted to create a safe space for people who have been bullied along with a group of people who could come together to find a way to make this stop. This group is very important to me.

CYCLIC VOMITING SYNDROME (CVS) AND GASTROPARESIS (GP). As someone who suffers both from Cyclic Vomiting Syndrome (CVS) and Gastroparesis (GP), it is sometimes hard to tell the difference between the two. It is so hard to get control of my vomiting once it starts because of Cyclic Vomiting Syndrome. Cyclic vomiting syndrome (CVS) is a chronic functional condition of unknown cause characterized by recurring attacks of intense nausea, vomiting, and sometimes abdominal pain, headaches, or migraines. Gastroparesis is a disease of the muscles of the stomach or the nerves controlling the muscles that causes the muscles to stop working. Gastroparesis results in inadequate grinding of food by the stomach. I wanted to start this group because there was not another like it on Facebook. There are groups for CVS alone and groups for GP alone, but not together. I wanted to change that.

GASTROPARESIS MOVIE, TV, AND BOOK GROUP.
It's like a book club, but with movies and TV shows too! We will pick one a week and then discuss it.
Since most of us can't go out to the movies and stuff like that, I thought it would be a fun way to get together to discuss movies, TV shows, and books. I'm toying with the idea of having events like on the xbox or skype or something where we can all watch the movies and comment on them together. Each week, it will be something new, so it might broaden your horizons on films and TV shows you would never consider watching otherwise, as well as books you might not consider reading on your own.

GASTROPARESIS SUPPORT FOR SURVIVORS OF ABUSE AND BULLYING. This group is a support group for GPers who have been abused/bullied in some way, by a relative, spouse, friends, etc. This is a safe place where people can share their stories, vent, and receive support from one another so that they can move past horrible things that have happened to them.

EMILY'S STOMACH. This is closed group that was created as an extension of the public Emily's Stomach Page, where people can post their questions, discussions, frustrations, pictures, and anything to help them with their diagnosis of GP. Chronically ill patients are welcome who have an invisible illness to join as well. We want our members to be able to interact with each other without fear of repercussions from their family and friends. All posts are confidential.

FIND AND RATE DOCTORS. This group is dedicated to come up with a list of physicians in each state who are proficient with dealing with invisible and/or chronic illnesses. We will also rate the doctors who we have seen, and will either recommend them to others, or tell others to avoid them because of issues experienced during a visit.

GASTROPARESIS SUPPORT THROUGH CRAFTING.
This is a new group for those who like arts and crafts. It was created for GP patients to share ideas, tips, and learn new things – all while being distracted from GP. A lot of our fellow warriors are very creative. If you want to learn something new or help teach someone something new, please join.

GASTROPARESIS ALLIANCE.
This is a new group designed to promote unity among the gastroparesis community. Instead of competing for likes or group members, we are joining forces with each other to make sure we support one another. We can do that by highlighting groups/pages/blogs and make sure we promote each other.

HELPING PEOPLE TO FIND DOCTORS (DOCTORS DATABASE). My friend, Melissa M. used to run a group like this one. As a matter of fact, she is why I wanted to revive the group. There are too many doctors out there who either under medicate or overmedicate. This group is dedicated to come up with a list of physicians in each state who are proficient with dealing with invisible and/or chronic illnesses. We will also rate the doctors who we have seen, and will either recommend them to others, or tell others to avoid them because of issues experienced during a visit. I would like, to have a working, updated, and rated spreadsheet of our own!

NUTRITIONAL SUPPORT(TPN AND ETERAL FEEDING) OPEN EDUCATION GROUP. Their mission statement is, "This group is designed as place for free exchange of ideas and support for people interested in the topic of nutrition support - enteral feeding, nutrition supplements for those with difficulty eating, and home parenteral nutrition. Many groups are restricted to patients and caregivers only. This group welcomes medical professionals and others with a reasonable interest in the topic so that patients and caregivers can help educate them about what our lives are like. Please be cognizant of the fact that this group is more open than others, though membership is still screened and rules are enforced to the best of my ability. If you have a particularly sensitive topic, it may be best to post it in a different group or consider whether it belongs in a group at all. There will be questions to answer when you request to join or someone adds you. Please feel free to contact an administrator at any time if you have any questions or concerns. We are not here to seek or provide medical advice. When possible, please provide sources for any claims that are not common knowledge."

PREGNANCY AND GP. This group was made for those with GP who are considering getting pregnant or who are pregnant with gastroparesis. You can ask questions with those who understand what you are going through. The people in this group are wonderful and willing to help.

GASTROPARESIS PARENTS WHO HAVE GP AND CHILDREN WITH GP. This group was made for those who have children diagnosed with gastroparesis. It is a group for parents to ask advice of other parents or just vent to those who understand what it is like taking care of a pediatric GPer. Additionally, it's a place where parents with GP can come together to talk with other parents about their challenges with GP for advice and guidance.

TEENAGE GASTROPARESIS SUPPORT GROUP. This is a new group for teenagers with Gastroparesis. This group is to help them contact other teens, get advice, and to help them through their teenage years with GP.

LOVED ONES WITH A GASTROPARESIS WARRIOR. This group is for family members and friends who may need additional support from one another because they have loved ones who are GP Warriors. This is a safe and understanding environment for loved ones to vent and to ask advice from others who are going through the same experience.

GASTROPARESIS - A POSITIVE FIGHT. This group is a support group for people, or friends and family members of people, that are suffering with gastroparesis. We want to make this a positive place to be a part of. A place where you can safely come for support without fear of judgement. We are committed to keeping this group a positive, safe place where you can come and not feel alone while you share your personal journey with this horrific disease. Having this disease or supporting someone that has it is already such a negative experience, so trying to find the positives, we truly believe will make us feel better in the long run.

GRIEF GROUP FOR GP WARRIORS.
This group was made so that those who have lost GPers in their lives can come to a safe space and remember those who they have lost in addition to talking with others who have also lost someone they have loved. This is a group made to help cope with our losses as we continue this fight against this invisible illness.

GASTROPARESIS FUNDRAISERS. This group was made to be a safe space for GPers to post their gofundme pages, their stores, or any kind of fundraising event related to gastroparesis. It is a one stop shopping group in order to promote gastroparesis research. A group with posts about different fundraisers is easier to track and follow as well as promote to others.

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.

GP WARRIORS WHO ARE WRITERS & BLOGGERS WORKING TOGETHER. 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 AND DIABETES SUPPORT GROUP. This is a group for those of us who have diabetes and also suffer from GP.

GPD WARRIORS SUPPORT GROUP. According to the description, "This group is for others like myself, to be able to build a community of love, support, and testimonials. More over, it is to inspire and educate with the mission of building hope and helping others to never give up."

SEX AND GASTROPARESIS. This is a group created to discuss sex and gastroparesis. Questions are welcomed about sex so that the other groups members can answer based on their experiences. This is a sensitive subject, so it's a private group. We want you to feel as comfortable as possible if you have a question.

FRIENDLY RECIPES FOR GP WARRIORS. This group was made to swap recipes that are GP friendly. A lot of us are different, and no two GPers are the same, but this group will give you an idea on how to prepare GP friendly food if you get tired of eating the same thing over and over again.

GASTROPARESIS RECIPES. This is another group dedicated to share GP friendly recipes with others. You can share your own and swap recipes here.

G-PACT. This group was made by GPACT to answer and questions that you might have concerning gastroparesis as well as to keep you informed of what GPACT is currently working on.

MOTHER'S OF ANGELS OF GP. This is a support group for those who have lost children to gastroparesis. It offers support and help to those who are grieving and gives them a safe and supportive environment in order to deal with their loss and grief.

GASTROPARESIS - A POSITIVE FIGHT. "This group is a support group for people or friends and family members of people that are suffering with gastroparesis. I want to make this a positive place to be apart of. Having this horrible disease or supporting someone that has it is already such a negative experience so trying to find the positives I truly believe will make us feel better in the long run."

LIFE WITH A GASTRIC STIMULATOR. "I am forming this group in an effort to share stories and progress for people with a gastric stimulator. There isn't a lot of information out there on what to expect after you have one placed. If you have questions often only the doctor can answer because searching online leads to a dead end."

GASTROPARESIS GOOGLY EYE MOVEMENT. This is a group to support the Googly Eye Movement in the Gastroparesis community. It's a fun gag, just to blow off some steam and it's all in harmless fun.

GASTROPARESIS WARRIORS AND STOMACH REMOVALS. This group is for those who have had their stomachs partially/completely removed as well as the Gastric Sleeve, Nissen Fundoplication, Gastric Bypass, and Gastrectomies are all invited to join for questions and support, for those who suffer from Gastroparesis/DTP.

DARK SIDE OF THE SPOON. Are you chronically ill/ Spoonie and enjoy adult themed humor, art, games, discussions and photo shares? This group is a safe place. All lifestyles are welcome.

WOMEN WARRIORS WITH GP (GASTROPARESIS). This group is a sister group of Stronger than Gastroparesis (GP Warriors). It is designed for meant for Women with Gastroparesis to discuss issues that stem being a female GP Warrior.

GASTROPARESIS AND MENTAL ILLNESS. This is a group for those who suffer from Gastroparesis and Mental Illness. A place to discuss how one effects the other. A place to vent and be supportive.

G-PACT SEND A SMILE. According to their group, “The Send a Smile program is designed to encourage our GP friends who are members of G-PACT. This program works by sending encouraging cards or letters for the recipients to Dotty Fanelli and she will send the whole lot of cards to the recipient in a big envelope. Recipients are nominated. They can be self-nominated, nominated by another G-PACT member or are nominated by the admins of G-PACT. Each recipient will be nominated once. Sometimes it takes a while for all of the cards to reach Dotty Fanelli, so she will often end up sending a couple envelopes to the recipient. Once a recipient has been nominated, he or she will be recorded by Dotty Fanelli in a book that holds all of the recipient’s information, the days they were announced in the Send a Smile group and any pertinent information. Recipients cannot be nominated several times. The members of G-PACT are all suffering in so many ways. The goal of this program is to reach out to as many people as possible who are in need of encouragement.”

TUBIES WITH GASTROPARESIS.
This group was designed to help tubes deal with issues regarding tubes, to answer questions, and to help those who just started using tubes. This group contains a lot of great resources and amazing people to help you if you have any tubie related questions.

NUTRITIONAL SUPPORT (TPN AND ETERAL FEEDING) OPEN EDUCATION GROUP. Their mission statement is, "This group is designed as place for free exchange of ideas and support for people interested in the topic of nutrition support - enteral feeding, nutrition supplements for those with difficulty eating, and home parenteral nutrition. Many groups are restricted to patients and caregivers only. This group welcomes medical professionals and others with a reasonable interest in the topic so that patients and caregivers can help educate them about what our lives are like. Please be cognizant of the fact that this group is more open than others, though membership is still screened and rules are enforced to the best of my ability. If you have a particularly sensitive topic, it may be best to post it in a different group or consider whether it belongs in a group at all. There will be questions to answer when you request to join or someone adds you. Please feel free to contact an administrator at any time if you have any questions or concerns. We are not here to seek or provide medical advice. When possible, please provide sources for any claims that are not common knowledge."

HEALING GASTROPARESIS NATURALLY. This group was created to give natural solutions to Gastroparesis problems. The people in the group are really wonderful and understanding and will be glad to help you should you have any questions.

GASTROPARESIS POETRY CORNER. This is a group for people who have gastroparesis to come together and share poetry they have written with each other. I believe you can also critique and help others with their poetry as well. It is a great outlet for those who might be looking for a distraction from gastroparesis, or for those whose poetry helps them deal with having gastroparesis, or other chronic illnesses.

GLOBAL GASTROPARESIS SUPPORT GROUP (GGG). This is a group for all GPers who are looking for patience and understanding with their illness. The group is run by a friend of mine and has helped so many already. She will do right by you and make sure that your questions get answered and give you the support you need.

LIFE OF THE LADYBUG. This is a group for creative writing and for inspiration, positivity. "Just a girl trying to blog. This is about my life’s journeys and what they bring; happy, sad, positive, sometimes anger but always honest and true.... hoping everyone enjoys and always feel free to comment what makes it all worth doing is input
Always remember to breathe!"

HUMOROUS, CUTENESS, AND SWEETNESS THERAPY. "I created this group cuz[sic] we all go through tough times in life and sometimes just seeing something as simple as a cute or sweet picture will bring a much needed smile to your face! It's like therapy! Which is exactly why I created this group!!!! Please help me make a difference in this world by bringing a smile to people's faces and making them laugh daily!"

FINDING HOPE, FAITH, AND LOVE IN RELATIONSHIPS WITH A CHRONIC ILLNESS. "Welcome to my online Facebook support group that I created! If you are seeking and looking for hope, faith, and love in any kind of relationships with a chronic illness, then this group is for you! This online support system will consist of people with ALL types of chronic illnesses who need advice, encouragement, tips, or have questions/concerns when it comes to any kind of relationships, including looking for or being in a relationship, whether you are the one dealing with health issues or you are interested in/dating/engaged/married to someone who has health issues! This group will also be open to support and uplift those who have experienced a break-up or are divorced/in process of a divorce or even widowed due to a chronic health issue as well! This group will NOT be a dating or matchmaking site AND it will be a 'closed' group for privacy reasons! This page will also be a voice for those struggling with health issues when it comes to finding hope, faith, and love in any type of relationship...not just *love relationships*, BUT even relationships with *loved ones*! We hope our stories inspire and encourage others that regardless of whatever health issues that come our way, you can STILL find hope, faith, and love in your relationships with others, including a mother/daughter relationship or even a father/daughter relationship as well too! Absolutely NO drama, bullying, lying, rudeness, or negativity towards other members/admins will be allowed in this group! Open to both men and women worldwide, 18 years old and up (due to adult content) and you will have the chance to send me a private message if you would like to make an anonymous post with any concerns or questions you may be too embarrassed to ask others about when it comes to relationships of any kind! We are NOT professionals or experts in this topic and everything posted will be honest and from real life experiences as I myself live with several chronic health issues! Please share your story with us! And please know that there is HOPE when it comes to ANY relationships dealing with a chronic illness! Just have hope and faith as you open your heart to the world of ***LOVE***!!!!"

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 a lot 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."

GASTROPARESIS & BARIATRIC SURGERY. This is a gastroparesis support group but with an emphasis on gastroparesis being caused by bariatric surgery.

CHRONIC PAIN AND INSOMNIA SUFFERS GROUP. This is a new support group, and while technically it's not a gastroparesis support group, it does touch on the pain and insomnia that most gastroparesis warriors go through. The group's description is, "This is a support group for chronic insomnia and chronic pain sufferers who need a little support when everyone else is sleeping."

HEALTH AND FOOD RECIPES. The page says, "it's all about eating and healthy life."





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.

GASTROPARESIS - EMILY'S STOMACH Twitter @emilysstomach will help you keep up to date with the Facebook page information. You can also email them at emilysstomach@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.

GASTROPARESIS AWARENESS. This twitter account is linked with its Facebook Page. It's all about bringing support and awareness for Gastroparesis. There are images posted to be shared to spread awareness.

LUCY'S LIGHT. "Patient Leader, Activist, Consultant, Writer & Speaker. Blogger @HuffPostUK & Lucy's Light. Living with a life-limiting condition. Owner of #AssistanceDog Molly."

GP AND ME GLOBAL. This account is linked with its Facebook counterpart. It contains motivational images, information on Gastroparesis, news on Gastroparesis, and blog posts to help answer people's questions. The owner of this account has published books and legislation for Gastroparesis.

MELISSA GP FIGHT. This account is ran by one of my good friends. She's a Gastroparesis Advocate and spreads awareness. She also has a Gastroparesis store and sells Jamberry.

THE COMPANY INSPIRE. "We are the leading healthcare social network, with a mission to accelerate medical progress through a world of connected patients."



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.

LUCY WATTS MBE. The description reads, "Youth Ambassador at International Children's Palliative Care Network."

THE COMPANY INSPIRE. "Inspire is the leading healthcare social network, with a mission to accelerate medical progress through a world of connected patients. Partnering with over 100 nonprofit patient advocacy organizations."


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.

GASTROPARESIS SUCKS. This is a Tumblr by Brianna dedicated to showing how much GP hurts.

THE COMPANY INSPIRE. "We are the leading social network for health. Together we're better."


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.

GASTROPARESIS. This Pinterest Board was made by Jeanne. It has information on Gastroparesis.

THE COMPANY INSPIRE. "Arlington, VA / We're the leading healthcare social network, with a mission to accelerate medical progress through a world of connected patients."



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.




Instagram:

EMILY'S STOMACH. This account has motivational pictures, advice on Gastroparesis, and contains jokes occasionally to make you laugh. It is all things Gastroparesis related.

THE COMPANY INSPIRE. "Inspire We are the leading healthcare social network, with a mission to accelerate medical progress through a world of connected patients."

http://www.instagram.com/gastromovement The website says, "Find valuable information here on Gastrointestinal issues and disorders. Raising awareness one Spoon at a time!"







Blogs:

THE GLITTER QUEEN. This is a site that is dedicated to those who are chronically ill. It states, "​Put simply, Glitter Queens Global spreads love, hope and cheer to those who battle chronic illness on a daily basis. Sometimes just knowing someone took the time to do something, especially for you, can make all the difference in the world."

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.

SMILING WITH GASTROPARESIS. This is a blog that walks through what gastroparesis is, what it does to your body, and it has other helpful information. For example, this blog has a section for the gastroparesis diet and another for links to other sources for those GPers looking for information.

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.

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.

STORIES OF HOPE, FAITH, AND COURAGE. She writes, "Sharing first hand personal experience of living life with a genetic condition. I am a health and wellness advocate for individuals with special needs and parents with special needs children. I share our journey living with a genetic disorder my first hand personal experience while encouraging and offering heartfelt stories of hope for others."

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.

MOMMIE'S QUIET PLACE. Her blog says, "The journey of our life living with multiple health issues and having a genetic disorder called 22q11.2 deletion syndrome (DiGeorge) or 22q for short My story is about how one family copes with 22q11.2 deletion syndrome, cerebral palsy our daughter has dual diagnoses and other health issues that come from having a genetic disorder. Read on for insight and advice from my personal first hand experience to learn new things or even have a moment where you realize someone else there has a yes I understand I get it. I love to mentor and connect with other moms who've been in the trenches. Mommies Quiet Place specializes in creating easy to understand ways of coping with living with many different health issues that come from having 22q11.2 deletion syndrome (DiGeorge) we share our journey of the good, bad and the messy. We love personal emails. send us a message on social media let us know we are not alone. Mama Blogger Health & wellness with a twist of faith a 22q deletion mama I share devotionals too. (sometimes but not in the in your face preachy way)."

KAYTE'S KORNER. Her description of her blog says, "Kaytes Korner is a site developed to help people suffering from chronic illnesses. I want this to be a place where we can share ideas, stories and easily find products, services, organizations and reviews to help us navigate the difficult world of Chronic Illness. I'd like to share with all my warriors my personal website where you can go to read my personal blog about my struggle with chronic illness, trying to find a healthier way of living and for venting/sharing your own experiences. It's only been up for about a month and I've been really sick and in/out of the hospital a number of times so there's still not a lot there yet, but i'm loading it with personal stories, blogs, recipes and I'm partnered with Amazon to get products have products sold directly on my site with them that are going to be natural, organic, preservative free, and health, conscious."

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!"

MILLY'S MUSINGS. This is what her description says, "I rely on my faith and my Jesus to get me through the trials of this journey I'm on! I love to write, laugh with friends, play the piano, and be at the barn. I love to learn and meet new people. My passion is missions and ministry! I'm treated for a probable mitochondrial disease, and have a variety of problems stemming from it."

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.

ADVENTURES OF TUBE GIRL. This is what her description says, "I have chronic digestive problems (gastroparesis, exocrine pancreatic insufficiency, malabsorption, histamine intolerance, fructose malabsorption, lactose intolerance, and multiple pollen associated food allergies). When I received a nasogastric feeding tube in December 2008 for supplemental night time feedings my fiancee and I came up with the stories of "Tube Girl" - my superwoman alter ego who saves the world from starvation in order to put a bit of fun into having an ng-tube. After six long months of ng tube feeding I received a g-tube at the end of May '09. Check out the posts labeled "The story so far" for more information. As of July 2010 I have to rely on a semi-elemental formula for malabsorption issues. Fall 2010 - finally had my g-button converted to a gj-button. Update Dec 2010 - because the gj-buttons wouldn't stay put, I had PEG/J put in with a pigtail for fixation in the jejunum. Update Jan 2011 - diagnosed with intestinal dysmotility issues. Update Aug 2011 - PEJ placed."

FIGHT 4 GEN. This is part of her story, "Gentrie is a happy, fun girl that will reach out to everyone and include them as a friend. She loves to dance, cheer, read, and finds art to be her passion. Because of her condition, she dreams of being a professional chef and collects recipes as she watches hours of food network. She has a strong desire to do well in school so that she can have an opportunity to be a physicians assistant and give back some of the service that she has received. Gentrie is the youngest of five siblings with the first three being big strong brothers that love to play sports. (Her brother Braden is currently a lineman at BYU.) She loves her new sister-in-laws and is best friends with her only sister Kenzie."

THE MYASTHENIA KID. This is the description from her blog, "Life with possibly undiagnosed Myasthenia Gravis, diagnosed severe autonomic dysfunction and Ehlers Danlos Syndrome hyper-mobility type."

LUCY'S LIGHT. This is what her About Me says, "This blog was started as an outlet for my feelings and experiences and raising awareness of problems I, and others like me, face. I am slowly educating my ever-increasing number of followers about issues including the problems the chronically ill, life limited and disabled face, different conditions, health and disability, healthcare (both inpatient and in the community), hospice and palliative care and the transition period (transferring from children's services to adult's services). The blog was originally called Overcoming Obstacles but as it moved from just my own thoughts and feelings to a wide range of issues and health conditions, I felt Lucy's Light - in line with my Facebook page (www.facebook.com/lucyslightuk) - was a better and more all-encompassing name for the blog. I tied in the name change with a revamp of the blog which is ongoing so if some pages aren't ready or some pieces/arrangement of the blog keeps changing please bear with me. I'm getting there."

GASTROPARESIS AND EHLERS-DANLOS SYNDROME. The About Me Description says, "My regular readers will notice the change in profile pictures! GIFT (Gastroparesis & Intestinal Failure Trust) is the name of our new support group!!! Myself and fellow patient, Rachel Stott are working really hard to build a reliable resource for patients. Please click the GIFT links on the right hand side of the page to see what we have been up to!!!![sic]"

SLOW STOMACH. This is a blog written by Irene.

JEANNIE'S BLOG. This is a blog written by Jeannie.

JESSICA'S JOURNEY. This is a blog written by Jessica to document her journey with Gastroparesis.

FIGHTING TOGETHER. This is a blog written by Amanda.

EVER GASTROPARESIS. This is a blog written by my friend Eve.

LIVING WITH GP. This is a blog written by Kirby showing how she lives with GP. "I have suffered the symptoms of gastroparesis for many years. When I first got diagnosed, I wanted to know all possible treatments and the progression of treatments if one of them failed. I also wanted to know, from a patient’s point of view, how all the processes worked, how it would feel and what happens during all types of treatment. Through this fan page and my website I offer just that – personal experiences with different treatments for my symptoms of GP as it progressed to what it is today. It is not meant to be medical advice; always consult your doctor when you experience symptoms or decide on treatments."

NICOLE STOPS THE SHOP. This is a blog written by Nicole about gastroparesis.

ENTER RA THERAPY. & PROVOKING BLISS. These two blogs were written by Lauren.

KRYSTAL'S GP BLOG. This blog was written by Melony to chronicle her struggle with GP.

I DANCE IN THE RAIN. This blog was written by Carrie.

MARTINA'S BLOG. This blog was written by Martina to chronicle her fight against GP.

LIFE. This blog was written by Carla to chronicle her suicide attempt and her struggles with gastroparesis.

GASTROPARESIS CRUSADER. This blog was written by Trish and she writes about her health experiences and reflections for self-healing & awareness.

SURVIVING GASTROPARESIS. This is a blog written by a man who has Gastroparesis and wants to share what works for him. Keep in mind that what works for him, may or may not, work for you because Gastroparesis is so different for everyone.

CHELLE'S HOPE, ONE DAY AT A TIME. This is a blog that states, "I believe trials are the biggest blessings in life! being sick has been my biggest trial yet. Being a young LDS woman I view my life as a beautiful gift. even when it doesn't seem that way my father in heaven helps me to have strength to endure all hardships of being ill. I hope to help others by sharing my day to day experiences. I'm just a small girl ready to make a difference. During the good times & while enduring the bad times we can live, encourage, & most importantly LOVE!"

DEPRESSION KILLS. This is a blog that was started by my mother to bring awareness to depression due to living with a chronic illness. It sheds light on the dark.






Youtube:

SANDY'S SLANT. This video channel follows Sandy, a tubie, having her tube replaced and what the journey is like for her. I highly recommend you to watch it.

NOT YET DEAD. This is a channel made by one of my good friends who has gastroparesis. She not only talks about that on her channel but talks about anxiety and considers her channel, "a place to talk." Her vlogs are VERY good, and I do not say that lightly.

ENTER THE WORLD OF GASTROPARESIS. Video Creator Hilary writes, "I as well as 5 million other Americans fight the 24/7 battle of a disease called Gastroparesis otherwise known as GP to those of us in the battle. Come along and take a look at what GP is and how it affects each and everyone of us."

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.

LADY J'S LIFE. This is a good resource for those who are curious as to what life is like day to day with gastroparesis. It also features videos from her husband, discussing what it is like to be a loved one of someone who is fighting gastroparesis, and what that is like. It definitely helps as a resource for those who think that gastroparesis is all in your head or that you will bounce back from it, like the flu. I recommend it highly.

LUCY WATTS MBE. The description reads, "My name is Lucy Watts MBE and I am 22 years old. I have a number of complex conditions which mean I am disabled and life-limited and in receipt of palliative and hospice care. I am completely wheelchair bound but spend most of my time in bed, am fed into my bloodstream via a line in my heart, and have other bags and tubes which all keep me alive. Despite my conditions I do a lot of charity work, writing blogs, articles and forewords, giving speeches, attending events, and appearing in videos and on TV and radio. I've spoken in Parliament and at the Department of Health. I work closely with 4 core charities, but am connected and work with many others. I also have my own blog with over 194,000 views (www.lucy-watts.co.uk). For my charity work I was appointed Member of the Most Excellent Order of the British Empire (MBE) in the 2016 New Years Honours for my services to Young People with Disabilities. I'm also an HSJ Top 50 Patient Leader and Jack Petchey and Diana Award winner."



Art, Stores & 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:


MELISSA'S GP FIGHT. Her description, "My name is Melissa (GP Fight) McElfresh, you may have seen me on Facebook or read my blog at: www.melissaGPfight.com. I have battled GP for a few years and understand the struggle that you are going through. Just like most of you, I didn't know anything about what Gastroparesis is, nor did my (1st) GI Dr help me in any way. Now I do and am on a much better path. My blog/web-page is designed to help those of you just starting out. A few years after being diagnosed with GP, I set out to make a difference in the GP Community by advocating. I have been part of G-PACT along with a couple other non-profits who help people like us, which has enabled me to learn a lot about GP. This knowledge prompted me to do my part, where I can. Leading me to create "Melissa GP Fight McElfresh" profile on Facebook where I: spread awareness of new medical procedures, any new clinic trials, jokes, inspiration, advocacy opportunities, coupon codes to products that may benefit you, nutrition/supplement ideas and much more. Links can be found at the bottom of this page. What prompted me to do a STORE? Well, one day it came to me that a lot of us are wanting more shirts and other products to help spread GP Awareness. Many ideas were in my head, so I looked around the internet and didn't see what I was trying to design, so I ran with the images in my head and hope you will like them! It is very important for me to keep the products cost effective for you. Even if that means I only make enough to cover my costs. And that is okay with me! My goal is to help YOU and not line my pocket. Most of us with a chronic illness are limited on funds. Life is hard enough, I don't want to compound matters :) I also hope to donate a % of my 'profit' for Gastroparesis Research. At this time I do not have a specific place in mind. Should you have any questions, please feel free to contact me. I am currently in a decent health position to work on a part-time basis, so I will try my best to check once a day for your questions/comments."


PATIENTS RISING. Their website states, "Patients Rising was formed to stand up for patients. To advocate for their rights. To fight for their access to the medications they need and deserve. And to tell the truth about health care. This is why we fight for access to vital therapies and services for patients with life-threatening and chronic diseases. It is therefore essential to create a balanced dialogue in the national conversation around these issues. Our programming includes: The Daily Rise; Voices of Value: Speak Up events and video, Patients Rising University publications and workshops. This is how we educate, advocate and communicate the importance of access to essential treatments and diagnostics. We focus on ensuring the authentic patient voice is heard, access to new therapies is paramount and the pipeline of progress is not threatened. Patients Rising is a national 501c3 organization based in Washington, DC. Combined with our 501c4 partner organization, Patients Rising NOW — we are extending our content presence in national media and targeting our programming to educate patients and expand our impact on their behalf. Patients Rising believes that connection is at the core of everything we do – and this can best occur online and in-person at local, state, and global conferences, roundtable discussions, workshops, podcasts, webinars and webcasts. We are committed to directly engaging the patient community, along with physicians, health policy experts and allied healthcare professions to develop realistic, solution-oriented discussions so those impacted with cancer and other critical medical challenges will amplify our collective voice and create lasting impact on the future of heath care in the United States and ultimately, around the world."

DIABETES SELF MANAGEMENT. (If you click on "Here") The website days, Although the term gastroparesis may be new to some, the symptoms of this ailment, in which the stomach’s ability to move food into the small intestine is impaired, can be all too familiar, as up to 50% of people with diabetes will develop gastroparesis. The slow stomach emptying characteristic of this condition can cause nausea, vomiting, a feeling of fullness after eating a small amount of food, bloating, discomfort in the upper abdomen, and a lack of appetite. These symptoms can also be accompanied by erratic blood glucose levels, requiring frequent blood glucose checks and injections of insulin."


TUBIEWHOOBIES. Their descriptions read, "We are the proud owners of Tubie Whoobies, but this is truly Gens story: Tubie Whoobies was created by my friend Tiffany and David Brors in 2011 as a small business that was focused on making the lives of children with feeding tubes just a little bit better. Tiffany started making fleece pads for her daughter Genevieve's feeding tube, and the idea flourished from there. Genevieve is a twin, born early with gastroschisis. She spent three months in the neonatal intensive care unit (NICU) and needed several surgeries and countless procedures to keep her alive. Unexpectedly, she got a massive infection in her gut, which destroyed her remaining intestine. It poisoned her blood and she almost didn't survive. Her birth defect led to problems for many organs inside of her body, and shes needed several treatments during her life to be able to thrive on her own. Gen's amazing story can be found at No Guts All Glory. The Brors' dedication to helping children like their daughter meant Tubie Whoobies was meant to be. So to continue this amazing journey despite ownership changes, this is and always will be about Gen."







Emailing Lists/Forums and Google Groups:


This is my Gastroparesis Google Group. I have brain fog really badly, so it is hard for me to remember things. With a mailing list, the history of the conversation is attached, so I can just go back through and catch up on what we were talking about so that I do not feel stupid. Plus, I have been meeting to start a mailing list for a while. I hope that you will give it a try: GASTROPARESIS GOOGLE EMAILING LIST.

Visit the Group attached to the emailing list, itself, at: GOOGLE GROUP.

I started a forum for the same reasons I started a Google Group/Mailing List, and here is another way to talk to people in a group without the group judging you face to face or just being hostile, as worse case scenarios. This forum pushes against the idea that you can only have a successful career or a wonderful family, when you can choose both. To visit, here is the link: GASTROPARESIS SLACK FORUM.







Websites:


EMILY'S STOMACH. The website says, "This site is dedicated to spread Gastroparesis awareness through new information and news regarding treatment, blog articles, fundraisers, and personal experiences. Gastroparesis is a condition in which the muscles in your stomach don't function normally. Ordinarily, strong muscular contractions propel food through your digestive tract. But in gastroparesis, the muscles in the wall of your stomach work poorly or not at all. This prevents your stomach from emptying properly. Gastroparesis can interfere with digestion, cause nausea and vomiting, and cause problems with blood sugar levels and nutrition. There is no cure for gastroparesis. Making changes to your diet may help you cope with gastroparesis signs and symptoms, but that's not always enough. Gastroparesis medications may offer some relief, but some can cause serious side effects. With no awareness, we will have no research, and no cure. Currently, there is no cure for Gastroparesis and the treatments for it involve medications with horrific side effects to extreme surgical procedures that may not help at all."

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."

BREAK THE SILENCE. The description reads, "The silence that hovers over millions and millions of people, keeps us from finding and receiving the medical care we need and deserve. The silence keeps us alienated and separated from so many in the community. Because of this silence, people who do not live with these medical illnesses continue to judge us. More often then not, we do not look sick, but that does not mean we are fine. The inside of our bodies tell a completely different story. Main site for GPnME Global, Inc. is under construction."

JENNIFER'S GP HOUSE. Jennifer’s GP House, will help patients(families) that travel into Louisville, Kentucky from all over the world to be treated for GP issues. We have learned from experience that people have more worries than their stay while in Louisville. We would like to shuttle patients(families) to and from their appointments and make sure that they have room and board free of charge, while staying at Jennifer’s GP House.

GIFT SUPPORT UK. GASTROPARESIS & INTESTINAL FAILURE TRUST (GIFT) This is what their description says, "We aim to provide reliable information and resources to all our members. We write from the heart, and tell our own personal stories. We want the world to know what it's really like to live with Gastroparesis, to help others know they are not alone. In hope of changing some of the common misconceptions in health care today. We are still a small organisation [sic] and our running costs are low. This allows us to donate a large proportion of our fundraising directly to research into gastric motility disorders at the Wingate Institute, London and similar projects throughout the UK."


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

NOW YOU SEE US. They are an online invisible illness network, according to their website. They have a "spotlight" section where they highlight people's writings, pictures, etc about invisible illnesses, including Gastroparesis. If you would like to contribute or have something promoted, just click on the image to help you. They are also looking for new team members to help them but you have to be healthy if you do. However, if you want, to team up, this is what the website says, "The #ysuTribe send us photographs and videos, which we turn into project content. They're central to the project. Send yours to our Facebook inbox or email them to us. We also need people for email interviews for our HEDS Up! features. We can't do anything without your contributions. And once you're part of the Tribe and part of the ysuNetwork, we'll help promote your cause, hobby, talent, event or independent business across the internet - for free."

OLEY FOUNDATION. "Home IV and tube feeding support group and discussion community. Founded in 1983 by Lyn Howard, MD and her patient, Clarence 'Oley' Oldenburg, the Oley Foundation is a national, independent, non-profit 501(c)(3) organization that strives to enrich the lives of patients dependent on home intravenous nutrition (parenteral) and tube feeding (enteral) through education, advocacy, and networking. The Foundation also serves as a resource for consumer’s families, clinicians and industry representatives, and other interested parties. Programs are directed by the staff and guidance is provided by a board of dedicated professionals and patients. We need your help reaching out to consumers on home IV nutrition and tube feeding. Research proves connecting with Oley improves outcomes and members tell us that it can be life-altering."

BUT YOU DON'T LOOK SICK. This website explains The Spoon Theory. I use The Spoon Theory myself to explain my Gastroparesis to other people. The website has a long list of resources for their own social media brand. It can be found here: SOCIAL NETWORKING.

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.

AMERICAN COLLEGE OF GASTROENTEROLOGY. This website is amazing! It tells a lot about Gastroparesis, including but not limited to testing, procedures, symptoms, causes, and explains what Gastroparesis is. Here is what was written in their About Section, "Gastroparesis literally translated means “stomach paralysis”. Gastroparesis is a digestive disorder in which the motility of the stomach is either abnormal or absent. In healthy people, when the stomach is functioning normally, contractions of the stomach help to crush ingested food and then propel the pulverized food into the small intestine where further digestion and absorption of nutrients occurs. When the condition of gastroparesis is present the stomach is unable to contract normally, and therefore cannot crush food nor propel food into the small intestine properly. Normal digestion may not occur."

MY BUTTON BUDDIES. "MyButtonBuddies are cloth pads designed to be worn around the G-tube (Gastrostomy - feeding into the stomach), J-tube (Jejunostomy - feeding into the small intestines), GJ-tube, and PEGs. These enteral feeding tubes are also called "buttons". These colorful pads are used in place of medical gauze that is typically used around the "button". Each cloth pad is about 2 - 2.5 inches across (diameter). MyButtonBuddies is a product of Szilagyi Associates, LLC."

GI ISSUES AND SLEEP. "It’s hard to sleep when you’re uncomfortable. Conditions like indigestion, constipation, heartburn, and nausea are all extremely uncomfortable, and even painful at times. If GI issues strike at night, it makes it difficult to sleep. Unfortunately, when we don’t get enough sleep, our stomach problems often persist into the next day and often get worse." This website has amazing information on GI issues and sleeping. I know a lot of people with Gastroparesis and GI issues have insomnia or weird sleeping habits due to their illness. This site is a great resource for those who may be looking for help or advice on how to sleep with GI issues.

G-PACT. "G-PACT is a 501(c)(3) non-profit organization which provides services to patients who have a digestive tract paralysis including gastroparesis, chronic intestinal pseudo-obstruction, and colonic inertia. We reach out to over 35 countries and all 50 states. We focus on a variety of options and provide services and information completely free of charge. All of our staff are volunteers, so 100% of donations go to support our activities."

WHAT IS GASTRIC ELECTRICAL STIMULATION? ENTERRA THERAPY. According to the website, "A small medical device called a neurostimulator is implanted under the skin, usually in the lower abdominal region. Two insulated wires called leads are implanted in the stomach wall muscle and then connected to the neurostimulator. The procedure is performed under general anesthesia. The neurostimulator sends mild electrical pulses through the leads to stimulate the smooth muscles of the lower stomach. This may help to control the chronic nausea and vomiting associated with gastroparesis* caused by diabetes or an unknown origin in patients aged 18 to 70 years. After the device is implanted, the doctor uses a handheld, external programmer to adjust the neurostimulator and customize the stimulation. Stimulation can be adjusted without surgery. The stimulation can be turned off by the doctor at any time if the person experiences any intolerable side effects." The device is below:


Bizarre Sleeping Habits of Famous People. This website was sent to me through my email by a writer. I wanted to include it in the list of resources in case someone might find information about these sleeping habits useful. I thought it was an interesting website and an interesting article. I wanted to include it here.








* I always want to be updated regarding groups, pages, websites, and other sources for those looking to join one. Also, you can be involved with multiple groups at one time - you do not have to pick and choose. There is no limit on how many groups you can join on Facebook. I encourage people to join many, just to see which groups are right for you. The same goes with pages and things, too.

If you have a Gastroparesis Resource I have missed, please email it to me at: emilysstomach@gmail.com. I will be glad to add it to this list, since it's a living document that changes and updates often.

Monday, December 3, 2012

Another Sleepless Night & Another New Symptom

I am so exhausted.

I can't sleep and all I can do is to curl up in a ball and whimper. The pain hurts. It's one huge spasm after another and the vomiting makes the pain worse. I'm pretty sure I pulled a muscle in my back vomiting this last time.

My fraternity's local alumni association had a holiday get together today. My husband is deeply involved in this organization and he's been here to support me, so I wanted to be there today to support him. The holiday get together was at a local soul food restaurant. Now, just the smell or image of food had me gagging this week, but I was determined that I was going to get through this lunch. I felt like I was marching to an execution and praying I didn't get sick at the restaurant. I took all of my medicine before I got into the car which includes Bentyl, Levsin, Zofran, Phenergan, Zanaflex, and my vitamins I've started taking. I added a multivitamin to the mix along with Vitamin B, because that was recommended to help my new symptoms of confusion. I've also been trying to add more potassium to my "diet."

I was quite proud of myself. I didn't get sick in the car and when I walked into the restaurant, the smell didn't knock me out like I thought it was going to. I managed to make myself eat a teaspoonful of dressing, two teaspoonsful of lima beans, and a few bites of banana pudding. After that, I was full. Also, a new symptom developed. Right after I ate, my belly started to swell. It looked like I was pregnant or that I had a balloon under my shirt. It was very uncomfortable and full of cramps. I actually had to change my pants later because they were too tight after I ate.

I managed to last the entire lunch without vomiting several times. I had to leave and get some air towards the end of lunch because the smells were making me extremely nauseated.

After getting into the car, the nausea became worse. Nothing helped. Not looking outside, not counting trees, not trying to relax, nothing. My stomach felt like someone was banging on it with a hammer. It was this intense, throbbing, sharp pain. It continued to do this until I got home. The spasms started happening and then I started vomiting. At least I had something in my stomach to vomit up, so it wasn't just stomach acid. My throat is still rather swollen from previous vomiting and it probably sounds and looks like I have strep throat.

I was up all last night vomiting and now I've been up all tonight vomiting. One of my friends said something, probably not meaning to be offensive but it came out that way, and I finally just broke down and cried. I sat there and cried for a good two hours. My wonderful husband, who lost his father this week, sat there and held me while I cried. He didn't ask what was wrong, he just stroked my hair. I felt so guilty because I feel like I should be comforting him, you know?

After crying, I vomited again. At this point, I left my bedroom to come upstairs to watch TV. I don't want to wake my husband up and my stomach isn't going to let me sleep anytime soon.

I managed to read all of, Gastroparesis: My Personal Journey and realized that I have the same symptoms. This isn't in my head. I can't tell you how many doctors have told me that the sickness is in my head and nothing more. I've had several friends remark about how strong I am but I don't feel strong. Then, I read something like this book and what this woman went through and it motivates me to be an advocate for myself.

I'm going to stick with facts and what I do know. I know that I vomit 6 to 8 times a day. I know that I'm dehydrated. I know that I'm still technically overweight but I've lost about 25 pounds since I was diagnosed. I've dropped a bra size and pants size. I can put two photos of me side by side from this year and last year and you can see that my face has thinned out considerably. I know that I look sick and that my skin is a weird pasty color. I know that if I make myself eat, even small and frequent meals (liquids), I will vomit.

I know that I can't leave the house without a a bucket of some sort to vomit in. I know that I have a year of college left and I'm not sure how I'm going to go to labs. I know my GI doctor doesn't know what to do for me at this point so he's referring me to the Mayo clinic. I know that I have mental confusion, depression, and my stomach becomes really swollen if I do manage to eat something. It doesn't matter what I eat, it all comes up. Liquids, solids, gluten free, gluten, etc. I've tried all of the different diets. I know that I'm scared (and I have a suspicion that I have an autoimmune disease at the heart of this problem - but I don't know what I've been tested for).

I also know that I am determined. I know that other GP fighters suffer worse than I do. I know I have loving family and friends who support me, even when I post six million times a day on Facebook to keep myself distracted. I appreciate all of the help my husband has given me and his support. Without him, I'm not sure I could do this. I know that I've found a wonderful support group online that has helped me so much with venting and answering most of my gastroparesis questions. Also, it makes me feel better to know that I'm not the only one.

I know that I'm going to keep fighting.