Find us on Google+ Gastroparesis: January 2016

Sunday, January 31, 2016

A Letter From A GPer to A Friend/Family Member

I wrote this letter as a note on my public Gastroparesis Facebook page (www.facebook.com/emilysstomach) today, trying to get out how I feel while trying to get other people to understand how lonely gastroparesis can be. I wanted to get out my feelings and I wanted to try and let my friends and family know why I am the way I am right now. It's not because I don't want to go out, and it's not because I don't want to spend time with them - smells from a movie theatre make me ill and I'm worried I'll vomit in the middle of a movie or an outing, embarrassing myself. So, I wanted to write a letter to them to help them understand why I am usually home but that I don't like to be home by myself. I would definitely welcome company. This illness is isolating and it is depressing after a while because people give up on you. No one wants to call you to ask you to hang out knowing you will say no and no one really wants to come over to your house to hang out when they want to go out and see a brand new movie they've been waiting months for. So, I wanted to put how I felt down in words. You'll find those words below:



Dear Friends and Family,

We are fighters. We are overlooked because our illness is invisible...but the pain is visible behind our eyes if you look closely. We are strong...we have to be stronger than most in order to survive on a day to day basis. We are all from different walks of life. You may not know we suffer, but we do. Gastroparesis can touch anyone at any age - children, teenagers, adults, the elderly...and there still isn't enough research to determine why.


GP is caused when the vagus nerve is damaged, and nerve damage in any other part of the body is severely painful, so imagine having nerve damage in your stomach where you have a lot more nerves, sensitive nerves. Vagus nerve damage can be caused by a variety of factors, like diabetes, and other reasons.

People tell us gastroparesis shouldn't hurt, but it does. If other people go to the doctor and tell the doctor they have nerve damage in their knees or their back, they're treated for pain and it's understood that nerve damage there hurts, so why would nerve damage in the stomach, with the most sensitive nerves not be as painful or more painful?

If you meet someone with gastroparesis, please be kind. We are all fighting a battle to stay alive, not to starve to death, and to try to be as normal as possible. We miss being able to eat during holidays and to take part in things that we used to. Most of us can't because we lack the energy, which stems from lack of nutrition, but it's not by our choice.

If you know someone with gastroparesis, be kind to them. Give them a hug. Invite them out anyway and if they can't go out with you, please try to make an effort to go to them to spend time with them at their house. Loneliness is hard and so is isolation. We miss company and being social. Some of us just need to be near a bathroom but we miss our friends and family.

Most of the time we feel like we live in a prison we can't escape from. Just please try to be patient and try to understand what it's like walking in our shoes. It's a hard road, and all we need is a little bit of support and understanding. That would mean everything to us if people took a little bit of time to understand what we go through on a daily basis and still wanted to be around us, despite all of this. It would make us cry with joy just to have people understand, come over, and even do something low key like watch a movie with us. It would mean more to us than you would ever know, just that simple act of kindness.

We are not making excuses when we say we cannot go out. We are not trying to avoid anyone. We aren't trying to hurt anyone's feelings. We feel devastated enough that we have to stay home most of the time, but that doesn't mean you're not welcome to come over and visit. We would love that. So, for those of you who have friends with #DTP or Gastroparesis, please know that it's NOT you or anything you did - not your fault at all, we just cannot do the things we used to do and that kills us a little bit inside. It's just as hard for us to adjust to this as it is for you.

We want normal back, or as close to normal as we can get. So please, try to make the effort to come over to our house and distract us. We need it. We need the happiness you inject into our lives. We need you. We need our friends and family and support. You are our lifeline to the outside world. You don't realize how important you are to us, but you really are. Thank you for being a friend, even though we know it's hard on you. Thank you for being you.



Sincerely,
GPers Everywhere


**Please support my Facebook page, where I wrote this note to depict how I was feeling today, by kindly clicking on “like” to show your support and to raise awareness for gastroparesis on Facebook: www.facebook.com/emilysstomach

Sunday, January 10, 2016

Gastroparesis Groups Should be for Support

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




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

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

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

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

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

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

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





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

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

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

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





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

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

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

PLEASE SHARE!






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

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

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

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

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

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

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

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

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

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

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

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

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















**Sidenote: I have never plagiarized intentionally on this blog, but I am human. However, I took this screenshot in January because it does show my writing *AND* I was a part of a group who were pushing an event at this time. I can show you my writing and my timestamp. I still do not believe I plagiarized, but this is what I have from January. It's below: