Gastroparesis Journals, Poetry, and Mentorship Program

I have a favorite poem that I wanted to share with all of you. It has been my favorite since high school. It really spoke to me because for the past few days, I've been very sad. Sometimes, it just seems like the Gastroparesis (GP) cycle is endless. Also, it feels like I'll never get better. I'm not usually so negative, but vomiting for the past three days and having the new doctor write me off just made me a bit depressed. Then, I thought about my favorite poem. It has always spoken to me and cheered me up when I've been at my lowest. It made me realize that I need to keep going. That things will get better and that I have the best Gastroparesis Warrior network that anyone could have.

"'If'
By: Rudyard Kipling

If you can keep your head when all about you
Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or being lied about, don’t deal in lies,
Or being hated, don’t give way to hating,
And yet don’t look too good, nor talk too wise:

If you can dream—and not make dreams your master;
If you can think—and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two impostors just the same;
If you can bear to hear the truth you’ve spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
And stoop and build ’em up with worn-out tools:

If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breathe a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: ‘Hold on!’

If you can talk with crowds and keep your virtue,
Or walk with Kings—nor lose the common touch,
If neither foes nor loving friends can hurt you,
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds’ worth of distance run,
Yours is the Earth and everything that’s in it,
And—which is more—you’ll be a Man, my son!"

Poem can be found at: http://www.poetryfoundation.org/poems-and-poets/poems/detail/46473


The meaning behind the poem is this:

"‘If‘ by Rudyard Kipling: About the poem

The poem ‘If’ by the India-born British Nobel laureate poet Rudyard Kipling is a poem of ultimate inspiration that tells us how to deal with different situations in life. The poet conveys his ideas about how to win this life, and after all, how to be a good human being.

The poem, written in 1895 and first published in ‘Rewards and Fairies’, 1910 is 32 lines long with four stanzas of eight lines each. It is a tribute to Leander Starr Jameson. The poem is written in the form of paternal advice to the poet’s son, John. You may read more about the poem at Wikipedia.

For the theme, as already told, the poem basically tells us the conditions that we should meet to succeed in life and make this life happy and a beautiful one. The whole poem is written in a single complex sentence. So all the subordinate clauses begin with ‘if’ and the main clause concluding the entire theme comes at the end, and the poem ends with a full stop.

This structure of the poem was important to achieve the conditional goal. The poet speaks of the achievement at the end, after discussing all the requirements to reach there. This structure is actually symbolic in suggesting that you can get the rewards only after you have fulfilled the preconditions. Moreover, this makes the readers eager to know what would happen when we meet all these conditions, thus retaining the curiosity and interest till the end.

And, as the main theme of the poem is a combination of so many if’s, the title ‘If’ is an apt one for the poem."

The meaning of the poem can be found here: http://englicist.com/summary-analysis/poem-if-rudyard-kipling-summary-explanation




There are several pen pal groups in the Gastroparesis community, so I wanted to put out a warning to everyone:

**WARNING** Any Pen Pal groups that you join is to get to know people. If you feel comfortable, friend them, and then share your private information with them. The admins should NEVER ask you for your personal information, unless you get to know them and you want to share your information with them as pen pals, but that's if you are comfortable enough. Just be careful. Your personal information should not be posted on the wall for all to see, because you never really know who is looking at it. The admins try to screen our groups carefully, but occasionally, we miss someone who may be a scammer.

I just wanted to caution anyone who is joining a pen pal group because I've had that happen and it's a very scary feeling, especially if someone tries to steal your identity. I've had this happen to me, which is why I just want to caution people to be careful. Pen pal groups can be amazing because they make you feel less isolated and alone, and it's nice to get real mail instead of spam for a change. Just be diligent. And your information should NOT be in the files section of the group for all to see. Pen pals usually only need your address and maybe your birth month and day to send you things on your birthday. You don't have to give them the year unless you know that person and trust them completely. I'll reiterate, just be careful with who and where you give out your personal information.

We've added a mentorship program to the group so you can get or give support to another member of our community. I am excited to see all of us build stronger relationships with each other and hope you'll join. Facebook has implemented a mentor/mentorship app in the groups now. I have turned it on in our group. There are a lot of mentorees that could use mentors, so far!

If you would like to read about the program, it's below:

https://newsroom.fb.com/news/2018/08/people-can-now-find-mentors-and-mentees-in-groups/

If you would like to sign up to be a mentor (and please don't be nervous about it, because you could really make a difference in someone's life. If you are worried about mistakes, don't be. Mistakes are a learning tool anyway - it's not a mistake if you can learn from it. Plus, instead of having a pen pal group, this is easier and more personal) or a mentoree, please see the left sidebar of the group that says "Mentorship" and here is a link:

https://www.facebook.com/groups/strongerthanGP/mentorship_application/


Here's how the program works:

You sign up, match yourself with a partner, and get helpful conversation starters each week so you get to know each other better better. It's up to you how much time you want to spend together and what goals you want to work towards. It's a new feature FB just implemented and I thought it would be a great idea to add it to the group. I just wanted to point out that option, in case you would be interested in it. It is an option to the left of the group’s feed, under “mentorship.”


Please feel free to send the group link to any friends who might be interested in joining. If anyone is added to the group by another member, it's automatically declined, for the groups' safety. I have stories about this for why I made it a rule. If you have any questions, you can contact me, Emily Randolph Scherer. We just want to make sure that each group member wants to be here, and they also need to answer the questions. But, on a positive note, we LOVE having new members! <3

SMART PHONE APPLICATION - MYSYMPTOMS





If you have a smart phone, my friend Sarah recommended an app to me. It's called MySymptoms: Food Diary and it's a diary for your phone. You can add your medications, what you eat, how often you get sick, all of your symptoms, stress levels, sleep quality, energy level, bowel movements, and more. It's easy to keep up with it.

I downloaded it at the Google Play store.

The only drawback is that it's $2.99 for the application, but it's worth it since we all carry our phones with us everywhere - even when we go out to eat (as rare as that happens).

You can download your data and give it to your doctor as well. I downloaded it and would highly recommend it to anyone with Gastroparesis. It's easy to learn how to use and it is easier to add things to your phone than to write them down sometimes. But I know that we all carry phones with us. I'm still going to use my Gastroparesis journal and write in it but I'm also going to keep track of things on my phone now too. It never hurts to have a back up.

This is my Gastroparesis Journal. It's actually River Song's journal replica from Doctor Who.











Keep a written journal. Write down the date in each entry.

You do want to make it as detailed as possible and you might notice a pattern in yourself.


I started a Gastroparesis journal, which you know of from previous articles in this blog. My Gastroparesis diary is really useful when I'm not near my computer to blog. Write down what time you wake up, what time you take your medicine, what you took, what time you eat, how much you eat, and what you ate. Write down what time you get sick, with what you were sick with, how much, and make it as detailed as possible. Write down any questions you think of to ask your doctor, since the visits with them go by so quickly and you may forget your questions. My doctor actually copies my journal for my chart. This way, you can eventually recognize a pattern with yourself - what makes you sick and maybe what doesn’t. Since every GPer Is different, this is a way to find out what works for you. I know GP is trial and error when it comes to diet, but this written record (I have to admit, my brain fog and memory are terrible so it’s good to write things down) will help you so much. I even print out research or positive things and paste them or tape them in my journal too. I carry it with me everywhere, even when I actually get to leave the house and go to the pharmacy or the doctor. It can be a spiral notebook, binder, you can buy a blank journal from amazon or in a store, you can make anything a GP journal. Give it a try and see if it works for you.

It really helps to keep track of what's going on with my body for my doctor, including questions so that I don't forget to ask since I don't get a whole lot of time to talk to the doctor. I write in mine daily. I keep track of my medications, when I attempt to eat, when I vomit, if I have a bowel movement, and the times of all of it. I also vent in it because it's not healthy to keep your feelings bottled up, and writing helps me cope, but everyone has different coping mechanisms that help them. Your gastroparesis journal could be as simple as a spiral notebook. I would highly suggest that you start one, if you don't have one already, because it really does help keep track of things, especially if you have a hard time remembering things like I do. I call it, "GP brain."



















I'm also going to share a few images that have gotten me through the past few days. I usually cut out images I find like this and put them in my diary to remind me to be strong.

How to Stay Motivated

Most Gastroparesis suffers have a hard time staying motivated because we are always really ill. We hide it and it's invisible. In reality, we feel like zombies just going through the motions of the day, that is, if we can get out of bed. I found some images on Pinterest (but it didn't have a source) about Motivation that I would like to share with you, to help you through those difficult days that we all have with this terrible condition.

According to Pyschology Today (http://www.psychologytoday.com/basics/motivation),

"How to Stay Motivated: Motivation is literally the desire to do things. It's the difference between waking up before dawn to pound the pavement and lazing around the house all day. It's the crucial element in setting and attaining goals—and research shows you can influence your own levels of motivation and self-control. So figure out what you want, power through the pain period, and start being who you want to be."

According to About.com. (http://psychology.about.com/od/mindex/g/motivation-definition.htm)

"Motivation is defined as the process that initiates, guides and maintains goal-oriented behaviors. Motivation is what causes us to act, whether it is getting a glass of water to reduce thirst or reading a book to gain knowledge.

It involves the biological, emotional, social and cognitive forces that activate behavior. In everyday usage, the term motivation is frequently used to describe why a person does something. For example, you might say that a student is so motivated to get into a clinical psychology program that she spends every night studying.

Psychologists have proposed a number of different theories of motivation, including drive theory, instinct theory and humanistic theory.


Components of Motivation

There are three major components to motivation: activation, persistence and intensity. Activation involves the decision to initiate a behavior, such as enrolling in a psychology class. Persistence is the continued effort toward a goal even though obstacles may exist, such as taking more psychology courses in order to earn a degree although it requires a significant investment of time, energy and resources. Finally, intensity can be seen in the concentration and vigor that goes into pursuing a goal. For example, one student might coast by without much effort, while another student will study regularly, participate in discussions and take advantage of research opportunities outside of class.


Extrinsic Vs. Intrinsic Motivation

Different types of motivation are frequently described as being either extrinsic or intrinsic. Extrinsic motivations are those that arise from outside of the individual and often involve rewards such as trophies, money, social recognition or praise. Intrinsic motivations are those that arise from within the individual, such as doing a complicated cross-word puzzle purely for the personal gratification of solving a problem."

Lifehack.org, written by Gleb Reys, has tips on how to stay motivated as well,

How exactly do some of us manage to stay motivated most of the time? Here are just a few ideas you can try:

1) Find the Good Reasons

Anything you do, no matter how simple, has a number of good reasons behind it. Not all the tasks have the good reasons to do them seen at first sight, but if you take just a few moments to analyse them, you will easily spot something good. We also have many tasks which don’t need any reasoning at all – we’ve been doing them for so long that they feel natural.

But if you’re ever stuck with some task you hate and there seems to be no motivation to complete it whatsoever, here’s what you need to do: find your good reasons. They may not be obvious, but stay at it until you see some, as this will bring your motivation back and will help you finish the task.


Some ideas for what a good reason can be:

a material reward – quite often, you will get paid for doing something you normally don’t like doing at all

personal gain – you will learn something new or will perhaps improve yourself in a certain way

a feeling of accomplishment – at least you’ll be able to walk away feeling great about finding the motivation and courage to complete such a tedious task

a step closer to your bigger goal – even the biggest accomplishments in history have started small and relied on simple and far less pleasant tasks than you might be working on. Every task you complete brings you closer to the ultimate goal, and acknowledging this always feels good.


2) Make it fun

When it comes to motivation, attitude is everything. Different people may have completely opposite feelings towards the same task: some will hate it, others will love it. Why do you think this happens? It’s simple: some of us find ways to make any task interesting and fun to do!

Take sports for example. Visiting your local gym daily for a half-an-hour workout sounds rather boring to many of us. Yet many others love the idea! They like exercising not only because they recognize the good reasons behind it, but simply because it’s fun! At certain time of their daily schedule, they find going to gym to be the best thing to do, simply because nothing else will fit their time and lifestyle so perfectly.

I want to add that with GP, it might be hard to leave the house for the severe cases. But you can do basic stretches at home on your couch or in bed. It will make you feel better. I'm going to attempt to take yoga because it has deep breathing and will strengthen my muscles. LaShelle, one of my good friends, rides horses. Just going for a short walk will help.

Depending on how you look at it, you can have fun doing just about anything! Just look for ways of having fun, and you’ll find them!


A simple approach is to start working on any task from asking yourself a few questions:

How can I enjoy this task?
What can I do to make this task fun for myself and possibly for others?
How can I make this work the best part of my day?


The answers will pop up momentarily, as long as you learn to have the definite expectation of any task being potentially enjoyable.

Some of you will probably think of a thing or two which are valid exceptions from this statement, like something you always hate doing, no matter how hard you try making it fun. I don’t want to argue – you’re probably right, and that’s why I don’t claim everything to be fun. However, most tasks have a great potential of being enjoyable, and so looking for ways to have fun while working is definitely a good habit to acquire.

3) Take different approach

When something doesn’t feel right, it’s always a good time to take a moment and look at the whole task looking for a different approach.

You may be doing everything correctly and most efficiently, but such an approach isn’t necessarily the most motivating one. Quite often you can find a number of obvious tweaks to your current approach which will both change your experience and open up new possibilities.

That’s why saying “one way or another” is so common: if you really want to accomplish your goal, there is always a away. And most likely, there’s more than one way. If a certain approach doesn’t work for you, find another one, and keep trying until you find the one which will both keep you motivated and get you the desired results.

Some people think that trying a different approach means giving up. They take pride in being really stubborn and refusing to try any other options on their way towards the goal. My opinion on this is that the power of focus is great, but you should be focusing on your goal, and not limiting your options by focusing on just one way to accomplish it it.


4) Recognize your progress

Everything you may be working on can be easily split into smaller parts and stages. For most goals, it is quite natural to split the process of accomplishing them into smaller tasks and milestones. There are a few reasons behind doing this, and one of them is tracking your progress.

We track our progress automatically with most activities. But to stay motivated, you need to recognize your progress, not merely track it.

Here’s how tracking and recognizing your progress is different: tracking is merely taking a note of having reached a certain stage in your process. Recognizing is taking time to look at a bigger picture and realize where exactly you are, and how much more you have left to do.

For example, if you’re going to read a book, always start by going through the contents table. Getting familiar with chapter titles and memorizing their total number will make it easier for you to recognize your progress as you read. Confirming how many pages your book has before starting it is also a good idea.

You see, reading any book you will be automatically looking at page numbers and chapter titles, but without knowing the total number of pages this information will have little meaning.

Somehow, it is in a human nature to always want things to happen at once. Even though we split complex tasks into simpler actions, we don’t quite feel the satisfaction until all is done and the task is fully complete. For many scenarios though, the task is so vast that such an approach will drain all the motivation out of you long before you have a chance to reach your goal. That’s why it is important to always take small steps and recognize the positive different and progress made.


5) Reward Yourself

This is a trick everyone likes: rewarding yourself is always pleasant. I’m happy to confirm that this is also one of the easiest and at the same time most powerful ways to stay motivated!

Feeling down about doing something? Dread the idea of working on some task? Hate the whole idea of working? You’re not alone in that, I’m telling you!

Right from the beginning, agree on some deliverables which will justify yourself getting rewarded. As soon as you get one of the agreed results, take time to reward yourself in some way.

For some tasks, just taking a break and relaxing for a few minutes will do. For others, you may want to get a smoothie and even treat yourself to a GP friendly dessert. For even bigger and more demanding tasks, you may want to reward yourself by doing something even more enjoyable, like going to a cinema or taking a trip to some place nice, or even buying yourself something.

Your progress may not seem to others like anything worth celebrating – but take time and do it anyway! It is your task and your reward, so any ways to stay motivated are good. The more you reward yourself for the honestly made progress, the more motivated you will feel about reaching new milestones, thus finally accomplishing your goal.


Mix and match

Now that you have these five ways of staying motivated, it is a good moment to give you the key to them all: mix and match! Pick one of the advices and apply it to your situation. If it doesn’t work, or if you simply want to get even more motivation, try another advice right way. Mix different approaches and match them to your task for best results.

Just think about it: finding good reasons to work on your task is bound to help you feel a bit better. Identifying ways to make it fun will help you enjoy the task even more. Finally, if you then plan a few points for easier tracking of your progress and on top of that agree on rewarding yourself as you go – this will make you feel most motivated about anything you have to work through.

Here is a Youtube video on how to stay positive and motivated: http://www.youtube.com/watch?v=fWCHuMMBg4k

Ten Hidden Reasons to Stay Motivated Source: http://www.sparkpeople.com/resource/motivation_articles.asp?id=196

Everyone tells us to stay motivated. Our friends, our co-workers, our relatives say to keep going, don’t quit. Sometimes, though, you ask, "Why? Why try my hardest when it ends in disappointment? Why go through something when it’s going to hurt? Why?"

Because it’s going to be different this time! Because you can’t accomplish anything that you give up on. Disappointments and failures happen to everyone. The difference between those who reach their goals and those who don’t is staying motivated. If you’re motivated, you’ll keep going. If you keep going, eventually you’ll reach your goal.

Need more reasons? Here are 10 of our ‘hidden’ reasons to stay motivated. Use one or all of them to keep the fire burning inside you.

1. Confidence

How did it feel after that first walk around the block? Or when you finally walked the stairs at work without losing your breath? Or even leaving the house? The more you accomplish, the more you’ll believe in yourself.

2. Fit into that dress

It’s been hanging up in your closet for two years now, just waiting to be thrown on for a night on the town. All it takes is for you to go that extra mile and stay on track. Before you know it, those two years will be ancient history. This would probably be better for milder cases of GP.

3. Make the week easier

Ever felt like a week was taking forever? It feels like Friday, but it’s only Tuesday? This happens when you’re not working towards anything. When you have a goal in mind, you’ll want to cook that GP friendly dinner or have friends over 0 or leave the house to meet them. The week will not only go faster, but be more enjoyable.

4. Gives you purpose

Every once in a while, we need a good reason. The ‘wow’ effect

Picture this: Walking into a store, you run into someone from high school, and their eyes light up. They gasp, "Wow, you look great!" (Again, this is probably for the milder case of GPers, but I don't think any of us want to hear the next sentence). By sticking with your goals, this can happen. Watch the "wows" add up.

8. Spread the spark

When friends and family see how hard you’re working, they’ll wonder how they can reach their own goals. Guess who they’re going to look to for help? By staying motivated, you’ll not only help yourself, but others too. This is very true. I've been helping people by admining on Facebook. You don't have to leave the house on your worst days but you can still be motivated to make a difference.

9. Keep gaining experience

The more you do, the more you will learn and understand. You’ll discover which tactics work best for you and which ones don’t. It’s like weeding out the garden - not the most enjoyable job in the world, but when you’re done, all that’s left are beautiful flowers. Keeping sticking with it and soon it will be all flowers for you. Here it is, right in front of you. Eat the GP approved diet (it can be found in LaShelle's blog at: http://gnewithgp.com/2013/07/03/gastroparesis-signs-symptoms-testing-treatments-and-a-gp-diet/) that’s going to jump start your day, go for your morning walk, or walk to the driveway and grab the newspaper. When you’re motivated, you have a reason to do what you do.

5. For your kids

And your grandkids. And their kids, too. The healthier you are, the longer you’ll be around to watch your kids grow and to spoil your grandchildren. They’ll want you to be around as long as possible; consider this just another present.

6. Power of momentum

It’s a scientific fact – something in motion tends to stay in motion. Momentum builds quickly and can lead to great results. Suddenly, you’re not only working for the goal, but also to keep your streak alive. Even more reason to reach your goals.
Stress will take a toll on your body. It's better to set goals and have small victories that will give you a boost and make you feel productive. I know that since I was diagnosed, my independence has been stripped. I've worked since I was sixteen but now, I can barely leave my house because I'm so violently ill. That's why I started my Laughing Through Gastroparesis Page (www.facebook.com/laughingwithgp). I also started a "secret" Laughing Through Gastroparesis group so that people can help collaborate and keep the chronically ill smiling. You don't have to be a GPer to join. You can join the group at this link: http://www.facebook.com/groups/487370524687206/.

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.