Spreading Positivity in the GP Community: Healing the Rift

I have touched on this before but I thought it was worth repeating. There are a lot of diverse groups that make up the gastroparesis community on social media. There are so many different variety of groups, so that you can usually find a support group that works for you and your needs. This is a very positive thing because gastroparesis can be very isolating. There are times where I feel like I am on house arrest. For instance, it is really hard for me to go places and do things with my friends/family because I vomit so frequently. Some of my friends will start vomiting if they see me do it, so that does not really work out. There are SO many positives to gastroparesis groups:

1. People know where you are coming from
2. People believe you so you do not have to constantly defend yourself
3. You get the support you need from a group set going through the same things
4. You can ask and answer questions
5. You make new friends
6. You get involved with the gastroparesis community
7. You do not have to censor yourself, because there is no such thing as TMI (too much information) in a support group
8. You can join multiple groups (it is better to do this since groups have specialities or if you want different perspectives)
9. It is nice to connect with others, especially if you are alone
10. You have the ability to help the newly diagnosed and share your experiences with them


Those are the positives that I love seeing in groups. The gastroparesis groups can be welcoming and inviting but you might have to search around until you can find one that is the fit for you. Usually, people in groups are willing to give suggestions to direct you to other groups if you feel like the one you joined is not the fit for you.


I have a list of gastroparesis resources here: HERE.


Now, I want to address something else, the negative sides of gastroparesis groups and by extension, the community. There seems to be a huge rift in our gastroparesis community at the moment and it seems to focus on each of the gastroparesis groups doing their own things. It does NOT matter how the rift in the groups began, who is at fault, because ultimately, we are hurting our main goal - which is gastroparesis awareness, and most importantly, each other.

Our community needs to heal and come together to work together to try and fight doctors, nurses, and others who think that gastroparesis is NOT real, despite test results that tell the contrary. It is a waste of our energy to fight one another when we should all be working towards a common goal. Instead, we are shooting ourselves in the foot and before long, no one is going to take us seriously. With all of this squabbling and fighting amongst each other, we are losing sight of the real message: to spread awareness about our illness. It's not a competition and we do have a common goal.

Therefore, this needs to end.

We are better than this. We need to work on making sure people know what gastroparesis is, how it effects so many, their quality of life, and to fight for those who barely have the energy to fight for themselves. We also need to dispense with the blame game. This fracturing is devastating to our community. Furthermore, even people in other support groups, like the cancer and stroke groups, are inquiring as to what is going on with the gastroparesis community. This has gotten out of hand and needs to stop. We cannot take the community out of gastroparesis community.


You do not have to like someone, but you CAN respect them.


All of the cliques, the in fighting, back biting, passive aggression - ALL OF IT, in groups needs to end. That is NOT what support is. It is hurting our cause instead of helping it. All of us have worked hard to get the community where it is today. It's taken a lot of work from so many people, and it is a very thankless job which we do for free in our spare time. We all do it because we love this community but also because it is important for us to find better treatment plans, and hopefully, a cure. We have lost THIRTY-FOUR people in the past two to three months. Let that sink in for a minute. We should honor those fallen warriors by continuing to promote awareness for gastroparesis.


No awareness, no research, no cure.


This giant rift in the gastroparesis community needs to close. No one needs to take sides. Instead, take the side of gastroparesis, and fight with everything you have to spread awareness, spread joy to those who are feeling down, spread friendship to those with this illness who are isolated. There are so many positives we could be doing! The gastroparesis community needs to come together and help each other out.

I would be happy to promote other groups, pages, etc, just like I have always done. To me, getting the word out matters and politics does not. I just do not understand how this happened in our community. But, I do want to rescue it and work with others before we lose all credibility completely. Like I previously stated, we already have a hard enough time fighting doctors, hospitals, and everything else. We all should look out for one another. We are a strong community, but we need to heal and move forward.

Image taken from: http://www.sanluisobispo.com/living/family/linda-lewis-griffith/article39430086.html





According to Senior Outlook (http://www.sanluisobispo.com/living/family/linda-lewis-griffith/article39430086.html,

"Even good relationships can be damaged by an argument, jealousy, misunderstanding, insult, rumor, or buildup of small resentments.

Sometimes things blow over quickly, but other times the upset lasts for years or even indefinitely. As time passes, people may even forget why they originally became upset.

Meanwhile, discord eats away at the peace of mind of those involved, and that affects the body. Negative emotions can release adrenaline and cortisol, chemicals useful in short-term fight-or-flight responses but destructive to the immune system when circulated in the bloodstream for extended periods. Augustine of Hippo (St. Augustine, 354–430 A.D.) wrote, 'Resentment is like taking poison and hoping the other person dies.'

Further bodily damage can be wrought. Many believe the mind delivers to your body whatever you speak, think, or otherwise focus on. If true, what bodily symptoms might result from expressing such thoughts as 'He’s a real pain in the neck/butt,' 'She makes me sick,' or 'I’m so sick and tired of that guy?'

Friends surrounding this ailing relationship are affected, too. After a friendship breaks up, party hosts may rightly invite both feuding friends; but then they may be asked awkward questions regarding whether the other person plans to attend. If both individuals attend anyhow, they may avoid or confront one other, making others uncomfortable.

What about innocent bystanders within the family—parents, children, siblings, and grandparents? Some family members feel forced to choose sides if two of their children or siblings aren’t speaking to each other. And how do you manage family holidays together? A schism within the family destroys peace.

All these unpleasant side effects are ample incentive to try to mend the torn relationship and restore peace and harmony between the two of you and among those dear to you both.

Writing a reconciliation letter is a good first step. Deliver your truth with compassion. Start with a sincere compliment or other positive statements; then create an emotional connection by mentioning what you’ve always enjoyed about each other or what you once enjoyed doing together—times you both treasured.

Acknowledge that no two people ever perceive or recall a situation in exactly the same way. Truthfully but kindly describe the situation—as you recall it—that you believe has caused the current upset. Avoid starting sentences with 'You,' such as 'You said,' as these statements seem accusatory. Instead, describe your own feelings in response to circumstances at the heart of the upset, e.g., 'I was devastated when I heard that statement made in front of everyone at the party.'

Accept responsibility and apologize for any part you may have played in the upset. Then ask for and/or extend forgiveness—whatever is appropriate. End by expressing hope of reconciliation, or at least an agreement to 'live and let live,' for personal peace as well as harmony among affected family and friends.

To allow the other person a chance to offer a considered response, not an emotionally charged one, mail your letter. Don’t ask for signed proof of delivery; this could be interpreted as a pressure tactic or power play. Just write 'Personal & Confidential—Please Deliver Unopened' to the right of your return address to help ensure privacy.

If you receive no response within a month, send a brief note stating you hope the note finds him or her well, you care about your relationship, and you’re hoping to hear from him or her regarding the letter you sent on (date). Consider attaching a duplicate of the letter, just in case.

With that, you’ll know you’ve made your best peacemaking effort; accept the outcome. Forgive yourself, if you haven’t already, for anything you might have contributed to the upset, because this, too, is healing. Finally, should you find yourself face to face with the other person, behave as if the upset never happened in the first place. This makes it easy, if the other person so desires, to gracefully resume that good relationship, without embarrassment or any need to explain.

And if, in the future, any resentment toward the other person creeps back into your thoughts, immediately forgive him or her mentally, and then once again forgive yourself. Repeat as often as needed."

The community needs to band together once more and fight for one another, not fight each other.

What the Gastroparesis Groups Are Fighting For

I wanted to write this article to show the fallen Gastroparesis Warriors that we have lost, to not only honor them, but to bring awareness to gastroparesis, and also to remember what we as gastroparesis sufferers are fighting for. We need people to listen to us that we're sick, that we have gastroparesis, and that we don't have enough awareness, research, to even get a cure. I feel like we're screaming but no one is listening. WE NEED YOUR HELP!

If you are a group owner and/or an administrator of a gastroparesis group, please join Gastroparesis Alliance: https://www.facebook.com/groups/gpalliance/ so that we can talk about how to unite and have our voices heard. We should be working together, not against each other. Most gastroparesis (GP) groups have the same goals and I'd love to have discussions with you on how to proceed on working together towards our common goal. We can talk about running awareness events together, or even bringing our group members together to talk and meet each other. We need to remember that people can be a part of a group and also join another group. It doesn't mean that the group they are in is any lesser of a group, it just means that there are more people who may be qualified to answer questions that you or I cannot. We should work together to help people in the gastroparesis community as well as spreading awareness so that we can inspire research and eventually a cure.

Every gastroparesis group is important and I want to take the time to thank people for making groups that others can join to find answers, be able to vent, and to be validated. Some people do not get that validation from their family, friends, or even their doctors. When I was first diagnosed, my family and friends thought it was all in my head. I cannot tell you how many friends I lost because of my illness. Chronic illnesses like gastroparesis are very isolating and these groups that we have started are many people's only outlet about their illness. So, to all of the group owners and administrators, thank you for doing what you do daily. It's a very thankless job and a very demanding one. However, you ARE doing something important and you may not realize how many lives you touch on a daily basis. The running of groups themselves are very demanding, but thank you for being selfless enough to start one and to help people. People are thankful, even though they might not be able to express it, but I think it is an amazing feat considering all of us are sick ourselves. So, on behalf of myself and my family, I want to thank each and every one of you who do this and encourage you to keep doing it. You never know how much you might help someone, or even stay them from suicide. Each group is important and I believe that is why we should work together.

We really get so upset...there are no words, when we log into to our GP Community and realize that some of our members died overnight. It makes it hard to log in ... I'm honestly scared to get on the computer and log into Facebook, terrified of finding another green candle (a green candle, for those of you who may not know, signifies that someone in the gastroparesis community has passed away. It's our way of showing respect). We really need to make our voices heard. If we are going to get anywhere with awareness for gastroparesis, we need to team up as groups and work together. According to Aesop's fable, which has a wonderful moral to share about this very same subject, which can be found at:(http://fablesofaesop.com/the-father-his-sons-and-the-bundle-of-sticks.html,

"A certain Father had a family of Sons, who were forever quarreling among themselves. No words he could say did the least good, so he cast about in his mind for some very striking example that should make them see that discord would lead them to misfortune.

One day when the quarreling had been much more violent than usual and each of the Sons was moping in a surly manner, he asked one of them to bring him a bundle of sticks. Then handing the bundle to each of his Sons in turn he told them to try to break it. But although each one tried his best, none was able to do so.

The Father then untied the bundle and gave the sticks to his Sons to break one by one. This they did very easily.

'My Sons,' said the Father, 'do you not see how certain it is that if you agree with each other and help each other, it will be impossible for your enemies to injure you? But if you are divided among yourselves, you will be no stronger than a single stick in that bundle.'

Moral

In unity is strength."

For those of you who are suffering from grief because you've lost someone who meant a lot to you, I have an article for you to read that may make you feel a bit better: http://www.emilysstomach.com/2016/04/losing-loved-one-to-chronic-illness.html.

I hope that you'll join this important cause. I really need you, the gastroparesis community really needs you. The more voices we have, maybe someone will listen and help us. No one should starve to death.

Gastroparesis Groups Should Come Together and Be for Support

I've heard from several different ‪#‎gastroparesis‬ groups and pages that there are different levels of "sickness." I want to reiterate that ‪GASTROPARESIS‬ IS NOT A COMPETITION, nor are any other invisible and chronic illnesses! There are people scared to post, in my gastroparesis groups even, because they do not have tubes, or they are not as skinny as some of the other members, or they do not vomit, because these people are scared they are not sick enough to post. Gastroparesis comes in MANY forms! But, in the end, it's all still gastroparesis. It's still a debilitating illness, one that we are striving to bring awareness to, to get research for, so that hopefully, we can find a cure. We cannot keep losing loved ones to this illness. I just lost one of my close gastroparesis friends right before Christmas. I want to make sure that her death was not in vain and neither were her awareness posts and activities.

If you see this behavior in another group or page, where members start attacking someone because they think that they are not sick enough or they think because the person posted a suicidal post that they need to be attacked, educate them and tell them that gastroparesis is gastroparesis, there is absolutely no need for ‪what I have termed to be Gastroparesis Shaming (#‎GPShaming)‬. Tell them what they are doing is wrong and that is not what a support group is for. According to http://dictionary.reference.com/browse/support-group is defined as,

"a group of people who meet regularly to support or sustain each other by discussing problems affecting them in common, as alcoholism or bereavement."

We are all sick, no two of us are a like, but there is not a race or competition that we are trying to win at because having gastroparesis definitely is NOT winning anything. These support groups are made up of a bunch of different people who maybe be in multiple support groups but that brings me to my next point, gastroparesis is NOT a numbers game for support groups. It is not a competition of how many members you have. I have seen some pretty nasty fights over members in "support" groups. People can be in multiple groups at once. Instead of wasting energy fighting on bringing up your numbers and trying to have the most people in your group, why don't all of us, all of the support groups, work together and join forces to bring awareness to Gastroparesis. One of my friends summed it up perfectly and I'm going to quote him here,

"When I first learned about gastroparesis it was from a friend active in the community.
Once I began to understand the impact that GP had on a person's life, and the lives of those around them, I knew I had to participate somehow in advocacy.

I started joining groups, reading posts, and becoming as intimately familiar as someone without the disease can become.

But I started to sense tension. Group A, B, C, D weren't WORKING TOGETHER. In fact it seemed like there was strife between the groups. I'm a grown up, I know how things work, I understood there would be fractures, but I believed (and still do) that the best way for the GP community to get the care and attention it NEEDS is for all the groups to lay down their arms and work together.

How is that to happen? I'm hoping someone smarter than me can figure it out but I have a few ideas.
Bless us all and may 2016 find us overcoming many of the obstacles that GP presents to it's sufferers.
Thank you Emily for building bridges."

Support groups fighting with other support groups needs to stop as well. We all need each other and we are all on the SAME TEAM! I can't stress that enough. It's not a competition for numbers, for who is sickest, for who has had the most procedures - it's a support group for SUPPORT! We need to make sure to take care of our own because GPers (gastroparesis patients) are the only ones who really understand what GPers go through on a daily basis because we live through it and we need to band together to help others realize this is a real illness, even though it's invisible, and stop fighting with each other to fight the much bigger fight of spreading awareness and having others take us seriously, not to mention helping others who have been newly diagnosed that do not know where to even begin! How can they take us seriously when we can't even align ourselves, all of the gastroparesis Facebook groups and pages, to unite for a common goal? If you think doctors and nurses don't join the gastroparesis support groups to try to learn more about the disease, then you would be wrong. Instead, they see all of backbiting, talking badly about other groups/people, and plans on how to get more members without addressing the concerns of members you already have - I mean, it happens. I chose to stay offline for a while because I felt like support groups were doing me more harm than good. The extra unnecessary drama was making me a lot more ill. But, I'm back because not all of the support groups are like that and I'm lucky to have found them.

I am going to take a stand, but I need YOUR help. I can't do this alone. It's going to take all of us working together to get rid of this stigma that has risen in "support" groups lately. So, as a result of that, I am making an event that will last for a month. The point of this event is to stop #GPShaming, bullying, number's games in support groups, and to get rid of any type of competition. I want to weed out the toxic groups so that people can find the love and support they need in order to live with this illness, because gastroparesis is hard enough and no one should have to deal with it alone.

Please invite them to join this event. Please don't let #GPShaming (please use this hashtag when talking about this event or when you post a photo for unification) happen in your group, or bullying, or anything that can be harmful to other groups. Support groups should be about support and not a popularity contest...it shouldn't look down on anyone who is having a bad GP day or who needs help. There shouldn't be judgements, just acceptance. I want to rid the groups of this stigma. I also want all of the GP support groups and pages to work together on this event - because we should be uniting to help spread awareness, education that leads to research, so that we can find a cure for this illness, our illness.

Over the next month, we're going to push this message really hard in hopes we can change the minds of the gastroparesis culture online that gastroparesis is NOT a competition but a serious medical illness that needs dedication, research, and a cure. That's all that matters - to stop the senseless deaths and the suffering because I'm tired of losing friends. We should all work together, not make a scale and judge people based on that "scale." The support groups should NOT be at war with each other, there is no point in fighting with one another - we hurt each other and others. People who have been recently diagnosed who come to a support group for advice and help become collateral damage, and that's NOT OK. This is in regards to Facebook Groups but seeing how some of this is done in some of these groups is almost like corporate espionage with how elaborate it is to tear a part other groups and take their members. People can join multiple support groups and we encourage that. But, mudslinging from different groups and having competitions on who can get the most members is silly and is missing the point of what a support group is here for. We want all of the Gastroparesis Support Groups to work together to do this...because we all need to support each other too.

Upload a picture of yourself to the wall, holding a poster or piece of paper that says something to the effect of GP Support Groups support each other and GP is not a competition. ♥ That way, we can all show our unity on this issue.

Updated Event for May 4, 2016: http://www.facebook.com/events/471111503080375/

Event Link: http://www.facebook.com/events/550356651796414/

PLEASE SHARE!

Again, let me reiterate, people in support groups are in there for SUPPORT. That means supporting that person in the decisions they make, WITHOUT JUDGEMENTS, and to offer advice and guidance for those who are new to this illness. It is NOT a place to start a who is sicker than who competition. Who cares? We're all sick. Does it matter who has what or who is sicker than who? No, it doesn't. We should all be working together, not judging each other and making others feel stressed because that makes the person sicker and lowers their immune systems. This in support group fighting thing is ridiculous. It makes me angry.

We should all be working towards a common goal. However, just like life, not everyone gets along. Also, there are different topics, different support groups to help people find the support group that is the right fit for them. Every GPer is different. You can't take all of the gastroparesis group members and put them in one big group - because everyone has different needs. They have the right to choose a group that works for them, personally, or make a group that works for them and other people. One of my friends told me tonight that she's tired of the "fracturing" of support groups. I cannot help with that, it is beyond my control. I have the groups I have - different topics, to help people. But, like I said, every GPer is different and they have different needs, different ways of coping, and they deserve to join a group that works for them and helps them through it. I do work with other group owners and send people their way when they ask certain questions I can't answer, and I point them to the group that would maybe answer their questions and give them better advice. I do my best to send people to already established groups about their particular issues. People can be a part of multiple groups. You don't have to leave one you like for another one you like. That's silly. I just want to help people. As for fracturing, that's beyond my control. I can't control what other people do and I understand we should all be working towards a common goal, but sadly, it's not a perfect world where everyone gets along so we can do that. But, I do try to work with other group owners and I do my best in my groups. I don't want people judging each other in there because you never know what a person is going through, you would have to, what's the saying? Walk a mile in that person's shoes to understand. People rush to judge without having all of the facts and that's not right. It's also not right to make it so that people are scared to post in support groups because they don't want to be attacked. That bothers me in groups as well. No one should be scared to post. They need to be able to express themselves without retribution. The support group may be the only place they can vent, and instead, they keep things bottled up and get sicker because they are too scared to post. That is NOT OK! I'm working so hard in my groups to make sure that doesn't happen.

It seems like the support groups have lost the meaning of support.

Support groups are also not a number's game, period. It does not matter how many people you have in a support group. That is NOT the purpose of having a group in a community for the chronically ill.

I will say that I am tired of the bullying, backbiting, and everything else going on in the groups today. There is a lot of cyber bullying in groups today which make individuals scared to post questions. If they post a question someone else does not like, they do not scroll past, but instead they start an argument and bully the person. The argument is not constructive and it is not civil. It's sad when people have to tear others down to make themselves feel important and relevant and it has been happening SO much lately. Because of people like this, the Gastroparesis community cannot come together, and work together towards a common goal. I am not sure where the toxicity came from that has invaded the gastroparesis community, but we all need to work together to address the issues and fix it. In the beginning, in about 2011, a handful of my friends and I started support groups for the community. We were a close knit group - but now, it seems like everything is fractured. There are cliques, people who want attention, people who bully others, power trips, and so many more toxic things that were not always there. There is so much drama now. There are also so many duplicated groups that it's a bit daunting.

We will not be able to unite until we get rid of the toxic people in the community who only hurt us, not lift us up. There are some really toxic people, almost like emotional vampires, staking out the groups and ready to pounce. They will disguise themselves as your friends, but you really have to be careful who you let into your life - especially someone you do not really know well that you met on the Internet. But, I digress. We need to do some spring cleaning in our gastroparesis community.

And that's the point of this article, we are already so sick, we need to lift each other up and to help, look out for one another.

So, if there is a story floating around about someone, I do not jump to the conclusion that it is true. I do not judge the person who is the subject of rumor and gossip. I do not believe everything I hear. Instead, I question it. There are always two sides to every story, whether people want to hear them or not. Likewise, if I see a post or comment in the groups that I do not like or with which I disagree, I ignore it and scroll on by, or hide the posts. Everyone is different. They come from all walks of life and should be treated with respect in the support groups. Most of these people are isolated because of their chronic illness, so their only contact with the outside world is through the Internet. Also, their gastroparesis is no less than mine, it does not matter if you have mild or severe, it's not a competition. And so I will continue to support those who need it. If someone asks a question and I do not have the answer, I will try and find it.

I do get upset and anxious a lot. It's hard to move past it most days. I know everyone has their bad days, gastroparesis is debilitating. It causes me a lot of pain and it causes me to vomit. I can tell you that when I have not been able to eat in a few days, or if I am in a lot of pain, it is really hard for me to keep my head clear. I usually have to take a break from the computer I order to get into a better headspace.

People make mistakes – we all do. We are all human and we do have the tendency to react out of anger or fear. We say things that we later regret because in the heat of the moment, with being sick on top of it, we respond rashly to simple things that would not warrant that kind of reaction. Once you say something like that on the Internet, it is forever. My suggestion would be to write out all of your feelings in an email and send it to yourself. Then, go do something else for a bit, and see if that helps you from making the mistake of something you would completely regret saying. Furthermore, I do not believe in publicly basting others on Facebook either. If you have an issue with someone, please leave it out of the groups. Instead, contact them directly and try to address it. If that does not work, block them. Just know that you tried your best.

I wrote this in one of the groups a while back, and I still mean it: Our community should be a welcoming and place for all to come and share their concerns, joys, heartaches, questions, and useful information. Support and helpful comments should be all we see. Our community should be a safe haven where people feel comfortable sharing their innermost concerns without the fear of negative repercussions and hurtful responses. We should be able to openly and honestly discuss anything in our lives that disturbs us, concerns us, keeps us from healing, fascinates us, or uplifts us. We should be able to be respectful of one another as well, even if we disagree. Minor disputes do not have to become wars.

Please, I am begging you to be kind to one another and strengthen the bonds between us. Simply refuse to believe the gossip, rumors, and lies. Refuse to perpetuate the drama and bad behavior. Ignore, scroll by, forgive, move on, and focus on what we all have in common. Focus on surviving and defeating this beast we call GP. Focus on fighting for our community, on supporting efforts to find better treatments and cures, on spreading awareness to those outside of our GP community who know nothing of our illness, and on offering support for our fellow GPers who so desperately need help.

I am going to be offline more than usual over the next few days, or weeks, or whatever it takes for me to continue. I am keenly aware that I am sick. I am keenly aware that none of us is promised another day – so none of this drama matters to me. People’s opinions of me don’t matter to me. Doing what is right, demonstrating compassion and kindness, and helping others – that’s what matters to me. Forgiving others and accepting them with all their weaknesses and flaws – that’s what matters to me. I will not spend my days engaged in conflict or constantly trying to defend myself or justify my actions. I do not wish to devote endless hours to sifting through and sorting out insignificant claims and disputes. I want to help people, really help people – ALL people. I care for absolutely everyone in this community, and if you need help, regardless of who you are, I will assist you to the best of my ability. I am not perfect, and I don’t have all the solutions. I also don’t have as much time as I would like and cannot always do everything that everyone asks of me. But I love my fellow GPers, and I want to continue to do my very best to fight for our gastroparesis community. I hope you all want the same. We need each other.

**Sidenote: I have never plagiarized intentionally on this blog. If I missed a quote here and there, I have always gone back to correct it. If anyone thinks that I have made an error, please contact me privately, and come to me as an adult so that we can discuss it. However, I took this screenshot in January because it does show my writing *AND* I was a part of a group who were pushing an event at this time. I can show you my writing and my timestamp. I DID NOT plagiarize, but this is what I have from January as proof below, even though I don't have to justify myself, but I have nothing to hide:

My New Facebook Page - Emily's Stomach - Please Like it in Support

As many of you know, I've been working on my own page affiliated with GNE. LaShelle and I are trying to branch out to reach a wider audience. If you could give Emily's Stomach a like, it would be amazing. I want to make a difference and this is my way of branching out to help the GP community. If you could share my new page, Emily's Stomach (www.facebook.com/emilysstomach) with friends, family, and loved ones, I would be most grateful. I will be posting interesting things in the next few days and would like your support. Without your support, I feel useless and unproductive. This gives me purpose right now, since I can barely leave the house.


You can read below of what I plan to accomplished with my page.

Thank you and stay strong in the fight!


NO AWARENESS, NO RESERACH, NO CURE!

Emily's Stomach is my page that I just started. It's my own page but it's affiliated with GNE and the link is here: www.facebook.com/greensnoteasy. If you read the About section on my page, there are other useful links that you might be interested in. The more support you have, the better things will be!


My page is different. I will post motivation, inspiring pictures as well as my blog articles, which contains information on Gastroparesis (GP). I will also post any new research or advancements on GP that I can find. I’m a researcher at heart and I love sharing research that I find. However, we ALL stand together, united, for the GP community.


I will still be working with LaShelle, admining the GNE Facebook page, but we're branching out to cover different things and to spread more awareness. We’re also trying to reach out to find those who suffer with GP that may not have anyone with support to turn to.


If you could share my page with family, loved ones, and friends, I would appreciate it. All are welcome to learn about GP and to be motivated. Spread the word about my new page because the more people we can reach, the better our research will be and the more awareness we’ll have!


The link to my Facebook page, and my contribution to the GNE community is: www.facebook.com/emilysstomach


Stay strong in the fight! You are NEVER alone! You are more than welcome to friend PM or meme on the page or on Facebook if you need someone to talk to. I’m always hereto listen.


Eventually, I hope all of the GP groups will get together and work as one since we are all working towards a common goal, which is to help the GP community.


My motto is: No awareness, no research, no cure.


Stay strong in the fight! You are NEVER alone! NEVER! You can also follow the ES Page on Twitter at: www.twitter.com/emilysstomach



My Other Pages/Groups/Blogs:


Emily's Stomach Blog - this is a blog I've started to help me through Gastroparesis as well as helping others through my own experiences. The link is here: www.emilysstomach.com

Emily's Stomach - affiliated with Green's Not Easy and gives you information and motivation about Gastroparesis. Also, to help out beginners. The link is here:www.facebook.com/emilysstomach

Laughing Through Gastroparesis (Public FB Page) - the object of this page is to make people smile because laughter is the best medicine! The link is here: www.facebook.com/laughingthrugp

Laughing Through Gastroparesis (Private FB Group) - A collaboration of GPers and non GPers posting humor to make us all feel better and laugh. The link is here: www.facebook.com/groups/laughingthrugp/

Blogs for Gastroparesis - a closed group where people can post their blog entries for others to read. You do not have to be a blog writer to join but GP blog writers are encouraged to join and share so that we can share blog traffic with each other. The link is here: www.facebook.com/onemillionforGP


The pages I admin are:


Gastroparesis - The link is here: www.facebook.com/gnewithgp

Gastroparesis and Me - The link is here: www.facebook.com/GPAndMeGlobal

Secretly Green - A closed group for those who want private posting. The link is here:www.facebook.com/groups/SecretlyGreen/

One Million Likes for Gastroparesis - The link is here: www.facebook.com/onemillionforGP

Gastroparesis and Diabetic Support Group - The link is here: www.facebook.com/onemillionforGP

Tats for Gastroparesis - The link is here: www.facebook.com/TatsForGastroparesis

Laxatives - Friend or Foe for Gastroparesis

Laxatives and My Story

As always, do not try laxatives or anything without first consulting with your GI/Motility Doctor to make sure that this is the right course for you. According to Wikipedia, "Laxatives are foods, compounds or drugs taken to loosen the stool, most often taken to treat constipation. Certain stimulant, lubricant and saline laxatives are used to evacuate the colon for rectal and/or bowel examinations, and may be supplemented by enemas under certain circumstances. Sufficiently high doses of laxatives may cause diarrhea. Laxatives work to increase the movement of feces along the colon. Some laxatives combine more than one active ingredient. Laxatives may be oral or in suppository form."

I always see questions about laxatives when it comes to Gastroparesis. The most recent question that was asked by anonymous, "Does anyone use laxatives to manage their GP?"

From my personal experience, the Mayo Clinic doctor I saw told me to use Milk of Magnesia nightly. There are many different flavors of it, so I could pick and choose which one I wanted to take. In the end, I chose cherry. The image source can be found by clicking HERE.

After trying laxatives for about a month, it helped somewhat. My advice, if you are just starting out using laxatives to help constipation with Gastroparesis, try a low dosage first. Then, gradually increase the dosage until something happens. You don't want to start off with a huge dose and suffer for hours in the bathroom, which I'm ashamed to admit has happened to me before.

But, my body has the issue where nothing seems to really move down but everything comes back up. With the Milk of Magnesia, I was able to have a bowel movement maybe once a week and a half which is more than what I was doing before. However, my Mayo doctor wasn't impressed with that and had me up the dosage. I take it nightly but since I barely eat, nothing really comes out. My specific problem is that almost everything I eat or drink comes up, instead of going down.

So, I posed a question to the Gastroparesis Page on Facebook (www.facebook.com/greensnoteasy) and Gastroparesis groups on Facebook to ask about different people's experiences and results with Laxatives. I received an amazing amount of responses.

Jax replied, "I have a laxative regimen for severe slow transit constipation - Movicol liquid 40ml 4 x a day (easier than sachets) I take Paraffin Liquid 3 times a day - Glycerin Suppositories twice a day - Docusate 3 times a day - microlette micro enema (daily) - Bisacodyl (my colo-rectal Specialist swears by that) and various other stool softeners. However none of that moves by bowel so I need it removed. Even pre-op bowel cleaning meds/bowel wash outs don't work for me, I was admitted for a week to have them all to try and kick start the bowel with no success at all. The large amounts I take do cause me to have more nausea/vomiting at times. Some aren't too pleasant to taste and the volumes I take don't sit well. Sometimes I get the crampy feeling that I'm about to have diarrhea but it never happens as I'm so impacted (except overflow after a few months). Before it all got this bad, I simply used Senna (Senokot) 8 a day and they helped provide gentle relief."

Alison says, "Hi Emily. I have to use laxatives every day or else nothing occurs. I have found the best ones for me are bisocodyl (ducolax is the counter name). I have to take a minimum of 6 a day if I take less nothing happens & wen I need to take more then its a stay nearer to toilet facilities than usual. If I take just the 6 I go once any less than 6 I won't go at all. The only issues I get are cramping sometimes but that's usually if they haven't worked the day before. Tried picolax & a dissolvable sachet one before but they didn't do anything so ended up compacted. Not nice lol. It helps but adds extra stress of having to take extra meds but thanks GP is all I can say to that is lol."

Brittany responds, "I live on Miralax daily, take laxatives very often, and do enemas and suppositories also very often. This isn't related to my GP though. I've always had chronic constipation and if I don't take anything, I just don't go. I've been diagnosed with colonic inertia (slow transit colon), and there are talks of having my colon removed in my future."

Brandy says, "I used to before I started using 2 body by vi shakes as meals and just eating one solid meal/small snacks. I haven't had to in months now."

Jami replies, "I was diagnosed with colonic inertia around the same time I was diagnosed with GP. We realized I had been severely constipated my whole life after I developed a rectal prolapse (at age 21). Medtronic has another pacer that's the same as the gastric pacer except that its implanted in your back and helps to stimulate your colon. I got that. It didn't help with my colon (but helped my bladder issues tremendously, so we kept it in). I ended up having to have a colectomy (3 surgeries in one: colectomy, rectal prolapse repair, & pelvic hernia repair). That helped me so much. I never knew what it was like to have a BM everyday. Before the surgery I had a bm maybe once every 2-3 weeks (but I didn't know that wasn't normal bc I've never had a discussion with anyone about the frequency of BM's and because I've only gone once every 2-3 weeks for as long as I can remember). The biopsy of my colon showed that over half the cells weren't functioning at all, which basically means that my colon barely worked and that it might be paralyzed (possibly GP related)? I still have to take Mirolax occasionally but that surgery made my life much easier."


So are Laxatives a friend or a foe? Well, with Gastroparesis, they can be both. I usually view them as a foe because of all of the pain they cause - the cramping, waiting around, and pain. But, there are times that laxatives can be useful. So, I'll let you decide which camp you fall into - friend or foe.

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 y    oNo awareness, no funding, no research. Spread the word!

Gastroparesis Websites:

ASTONISHING LITTLE VIGOROUS WARRIORS. According to the site, it says, "Hope is where the HEART is . We aim to spread a bouquet of HOPE , Vase of SPRINKLES and a platter of LOVE. Astonishing Little Vigorous Warrior's wants to spread our message of hope and commiseration. We believe that a single action can make a difference. Through advocacy and outreach activities, our team works tirelessly each day to contribute their component to the more preponderant good . Every ounce of time and energy goes to making children smile."

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.

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.

OKLAHOMA GP WARRIOR'S. 

"I've created this group to help other's and their family members/ friend's who've been diagnosed with GP & whom are currently living in Oklahoma or plan to move to Oklahoma find local support, doctor recommendations, possible get togethers or outings, hospital visitor's, (as it can get lonely & boring during our stays in the hospitals)ect.... If you'd like a group that isn't just support from behind a screen but more of developing a friendship and have face time once in awhile and you or loved one w/ GP live in Oklahoma then THIS is the group for you!"

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."S

CVS SPEAKS. CVS SPEAKS is a social media outreach organization, connecting CVS sufferers with online support groups, media resources, research and awareness activities.  We are social media outreach organization. We are all volunteer run. We seek to raise awareness of Cyclic Vomiting Syndrome. We seek to help all people of CVS find a support group that fits their needs. We also support and assist admin of a variety of groups maintain the highest quality groups on Facebook.

CVS SPEAKS EDUCATION LIBRARY. This group is the Education Library for CVS Speaks Awareness Outreach. Many well known research articles can be found in the files section. Cyclic Vomiting Syndrome is a rare medical condition...If you have come to this group, elaboration is not necessary. Our purpose here is to explore ways to raise awareness of this condition and discover tangible ways to campaign, educate and raise AWARENESS within the medical community and the general population.

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."

CHRONIC ILLNESS WARRIORS CIW. 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.

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.


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 FAILS. the first of its kind, that I think you guys might be interested in joining. It's just for fun. My admins and I came up with the idea of a group (my original idea was a twitter account) but I think a group works better. If you need a laugh or want to post your own GP Fail for others to see, this is the group for you! I laugh at myself a lot because I have done a lot of GP Fails. For example, tonight as I was taking my nighttime medication, and I dropped one of my pills and it landed in the can of ginger ale I had been sipping on. I had to CHUG the can quickly. before it dissolved. Ew! See, it's things like that! I think it's a wonderful idea, no other groups have this, and I think it would be a great way to blow off some steam but laugh at the same time! Come and join us!


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 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.


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: DAY BY DAY. "The purpose of this group is to help spread awareness about Gastroparesis and to provide a place for people to share their experiences living with this condition. This group does not provide medical advice and you should always check with your medical professional before taking any prescription medicine, over the counter medicine and/or supplements."


GASTROPARESIS: DAY BY DAY, SHITS AND GIGGLES. "This group is for us to make fun of our daily lives and laugh about what life throws at us! Please post anything that will bring a smile or joy to our lives! This page is to help us to laugh and remember that laughter heals!"


GASTROPARESIS: DAY BY DAY ARTS & CRAFTS GROUP. "This will be a Beautiful & Positive Place where we can come and share our creativity such as drawings, crafts, bracelets, coloring crocheting, etc. to let the others know the things that help us to cope as we struggling to live with Gastroparesis..."

CVS SPEAKS THINK TANK. "This group is the Education Library / Think Tank for CVS Speaks Support Network. This group is a great place for newly diagnosed to learn more about the collection of symptoms called 'Cyclic Vomiting Syndrome' the causes and suggested treatments. Over the next few weeks we will be transferring over information from our existing groups and CVS Speaks.

All ages and locations welcome!"

IN HONOR OF THOSE WE HAVE LOVED & LOST/GASTROPARESIS: DAY BY DAY. "This Group was created to Honor & Remember those that we have Loved & Lost to GP. May we never forget them!"


GASTROPARESIS: DAY BY DAY BIBLE MINISTRY. "The Gastroparesis Day by Day: Bible Ministry group was started in 2016. We are currently doing an 10 Week Esther Bible study. We try to follow a weekly basis but this is not set in stone as we ourselves and our members struggle with our health. The main point of the group is to learn about God, grow in our faith, and have an online church community for support. Church isn’t always accessible or accepting of the Spoonie community so that’s why the group was started. Many from our gastroparesis community haven’t been able to get to church in a long time or cant be consistent. They lack a support community from other Christians and don’t always ‘fit in’ or are judged. So having an online, easily accessible, accepting, and understanding group of spoonie Christians has been our main goal."


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.

GP SUPPORT GROUP 4 GAINERS. "This group is for those living with Gastroparesis who tend to gain or fluctuate in weight. We welcome you to share your insight and encourage you to support others who experience this often misunderstood effect of GP."


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 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.

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."

GASTROPARESIS SUPPORT VENTING CORNER. "A close knit support group for people with Gastroparesis who NEED to vent. We provide a non judgmental, Freedom of Speech corner to give and receive support....."

MEETING THROUGH CHRONIC ILLNESS. Their group description says, "This is a safe place to talk about any aspect of chronic illness." They seem to be a very positivity oriented group, which is wonderful.


CHRONIC PAIN. "Most comprehensive information on how to deal with and treat various types of chronic pain."


BACK PAIN & SCIATICA SUFFERER SUPPORT.  "Welcome! This is group is full of wonderful, supportive, highly intelligent members. Please take a minute to read the group rules/guidelines. Any questions, reach out to any of the admins. Check out the files at the top of the page for tons of great info. Be kind to other members. You do not have to agree with everyone. Exchanging new information is informative and encouraging. Everyone deserves respect. We have a zero tolerance for bullying. No hate speech, abusive comments or degrading remarks. We do not allow ranting or cursing as courtesy to all members. This is a safe place for members to share experiences, successes and failures. Racial, cultural, religious affiliations or lack thereof, sexual orientation, gender identity issues are not to be discussed here. This is not the place to air hostility. The members of our group are very helpful and are quick to answer any questions you may have."







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.

GPFAIL. This account wss made to laugh at yourself and things other people have done, as well. Sometimes, you just need a good smile or laugh when you are having a rough time. This is a funny Twitter account for you! If you have any questions or comments, the email address is: gastroparesisfails@gmail.com.

GAINER GP. Twitter @gainergp will help you keep up to date with advancements, and medical studies on the subject. I have gotten a lot of PMs over the past month about GP and weight. They have broken my heart, so I decided to make a twitter page for it and a Facebook page for it, because no one should ever feel alone.

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."

LIL MAN & MAMA C. "This runs on love, laughter & a lot of coffee. We don't really know what we're doing either; Just having fun and making a fool of ourselves doing it! It's like a surprise, you'll never know what your gonna get with us:) 'You're never too young to start an empire and you're never too old to chase a dream'"

Gastroparesis Song:

FACE EVERYTHING AND RISE - FEAR: Last Easter I was admitted into Hospital and was put back onto TPN after having nearly 8 months off. It was a massive shock to be told the news, and I didn’t cope with the idea at all. So much so that I broke down in tears during the meeting. Then, on the day I was being admitted, Pete and I walked up to F level together (like we always used to), but as soon as I saw the ward sign for F11 I ran in the opposite direction in tears and refused to go back.  I had so many hopes and dreams of what I wanted to do, but the whole ‘Hospital world’ just seemed to always get in the way of any of them becoming reality. Anyway...It’s been 12 months since then, and I am now 100% reliant on TPN. And although it’s been a really tough year, this song by Jonny Moody sums the past years journey up perfectly.  So much so that I couldn’t have explained how I feel any better! Just like his words suggest, it’s the 'doing of it all' that means dreams can eventually become a reality. For me, the ‘dream’ is to simply be happy...If I am happy, I can cope! So although I still hate the ‘Hospital world’ part of my life, I’ve finally realized that it is only because of the Hospital bits, and because of TPN, that I am then able to make my dreams a reality during the times that I am not in Hospital. Just like this year’s Easter has been on our boat.

For others the dream might be something else, but regardless of your situation or what your dreams are... I think this song is hugely relevant to so many! Anyway, have a listen- it’s a great song, and check out my drone skills in the video too 🤘🏻 Awesome I know 🤪If you like the song, then please go and check out Jonny Moody Official page and his music on ITunes...He’s the new Ed Sheeran, I’m telling you 🤣& Thank you to my Friends and Family for making this year’s Easter a memorable and happy one!  Here is the link to the song: https://www.facebook.com/1296964013677378/posts/2886243301416100?sfns=mo

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."

EMILYS STOMACH PINTEREST. "I am a Gastroparesis Advocate. Trying to educate abt gp. Follow me: @emilysstomach IG: emilysstomach www.emilysstomach.com email: emilysstomach@gmail.com"



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.

DISABLED UNICORN SPOONIE.  This account is about encouragement and information on "GERD, Gastroparesis, Scoliosis, Arthritis & then some."  

THE FIBROMENTALITY.  This is Mo. She says, "Spoonie wife & mom 🥄 living with several #chronicillnesses. Here to spread awareness & facts💜

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

GASTROMOVEMENT The website says, "Find valuable information here on Gastrointestinal issues and disorders. Raising awareness one Spoon at a time!"

LIL MAN & MAMA C. "This runs on love, laughter & a lot of coffee. We don't really know what we're doing either; Just having fun and making a fool of ourselves doing it! It's like a surprise, you'll never know what your gonna get with us:) 'You're never too young to start an empire and you're never too old to chase a dream'"

Forums:

EMILYS STOMACH. This is a forum for people to come together and discuss GP. It's private and the application is easy to use. It's a great place to connect with other GPers and chronically ill warriors.

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.

BAWARE MENTALLY.  This is a blog that says, "Welcome to my blog. I have compiled relevant information surrounding Mental & Physical Disorders. I have been working on several mental health projects for a few years now, trying to find what works best for me. I am proud to launch this renovated website with more information, links, resources and images. My ultimate goal is to spread as much awareness and education on mental health and gastrointestinal diseases in our communities and ways in which we can get involved and help others and ourselves see the positives of the stigma."

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.

LIL MAN & MAMA C. The description says, "This channel runs on love, laughter & a lot of coffee. We don't really know what we're doing either; Just having fun and making a fool of ourselves doing it! It's like a surprise, you'll never know what your gonna get with us:) 'You're never too young to start an empire and you're never too old to chase a dream'"



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:

SICK GIRL HOPE.. This is a store with chronic illness apparel. My friend Alley has designed her own clothing and the designs are amazing! If you want to support someone with a chronic illness like Gastroparesis, this store is for you. Everything is well made and will not fade in the wash. I speak from experience because I love ordering her designs. She is one of my favorite artists.


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.


PAPARZZIACCESSORIES.COM. "You might think we're all about accessories, but Paparazzi is really about change! Changing the way people look. Changing the way people feel. Changing people's futures and their lives. Though our fashion-forward jewelry and product parties are centered on fun, Paparazzi fulfills a serious mission. We believe that trendy accessories can be available, and affordable, to women everywhere. We know that wearing a new look, and feeling confident in your appearance, builds amazing self-worth. Our passion is inspiring dreams, empowering talents, and reaching goals by sharing our products and the excitement of Paparazzi. We see it happen every day."


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.