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

GP Support Groups vs. GP Support Groups - Illness is NOT a Competition or a Number's Game

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!








I'm going to leave you with a quote from another one of my great GP friends. She said what everyone was too scared to say so I'll leave you with these words to reflect on, and she wrote this knowing she might lose friends over it - so it was incredibly brave,


"I care about people, and I want to help them -- especially people in the GP community, but all others as well. If I can help, I ALWAYS will. I stand up for myself and for others who cannot or will not (for whatever reason) defend themselves. Life is incredibly short, as has been demonstrated to me time and time again in my own life and in the lives of others, and I do not wish to spend my days focusing on the bad in people or ignoring their plight.
I wrote this awhile back, but I think I need to re-post it because I truly believe it should be said again. I could reword it, but I meant what I said the first time, so I do not see the need to do that. I am at a loss to explain why people are so vicious to one another and why they jump to believe the absolute worst about others -- people who are supposed to be their friends. I am shocked at how lightly people take their actions and how they have no problem hurting people they supposedly care about. If you choose to hurt me and others I care about with no justification, then you are not my friend.

I am a proper "rules and order" kind of person (because rules are our friends smile emoticon ); yet, I am dismayed at how people let "rules" get in the way of decent treatment and compassion for others. I am likewise shocked at how they use "feelings" to justify bad behavior. If you don't like someone, "unfriend" them -- but is there really a need to talk behind their backs? Post and spread lies about them? Block them? [I have blocked exactly one person on Facebook since the day I came on -- and that was after he sent me some not-so-nice photos. (Please, if you are thinking of sending me indecent pictures, rethink it. Please.)] Good people disagree. They fight. They make mistakes. They have different values and beliefs. This is not a reason to hate.
So, I am reposting this. Add this to my already 900+ page epic novel, Grammarly.
**************************************************************************

My apologies, yet again, to my non-GP friends. I hope you can understand that my illness affects every part of my life. It never leaves me, and I never get a break from it, not even for a moment. So, I focus on it maybe more than some of my friends are comfortable with. If that is the case, this is likely a post you will want to ignore. I always struggle with how much GP happenings to let overflow onto my personal page, and this particular issue is a difficult one because it is an issue I have little desire to address. I absolutely hate discussing personal matters in public. It makes me immensely uncomfortable. I am a private person who detests talking about feelings and revealing personal information. But I am on “social” media for a reason. I need to reach people, and furthermore, I am completely devoted to helping my gastroparesis community. To that end, regardless of my comfort level, there are some things I believe I must do simply because they are right and necessary. It doesn’t matter how I “feel” about it; I just do it regardless. This is one of those times. I cannot reach everyone in all the groups, and I am not sure this would be a helpful discourse to post inside the groups anyway, so I am putting it here in the hope that it will make a difference. I kindly ask my non-GP friends to simply overlook this post and forgive me for any discomfort it may cause.

It strikes me that things are getting a little rough in the support groups right now. The arguments, accusations, and hurt feelings seem to have escalated in recent weeks. I don’t know all the reasons behind this turn of events. What I do know is that we should be strongly united as a community, and if the bickering does not stop, we are going to tear ourselves apart. For the first time since being diagnosed, I honestly feel like leaving the groups because of the level of conflict and discord that I see. Perhaps that is just my perception. Perhaps only a few others feel this way – but I don’t think so.

From my point of view, this is senseless. We are all human beings, and that makes us worthy in and of itself, but beyond that, we are all struggling with this devastating disease that has stolen so much from us and that should unite us in a common cause. Personally, I believe in showing kindness, compassion, and acceptance to all, and I strive very hard to demonstrate the principals I proclaim. I do not care if you are rich or poor; black, white, or somewhere in-between; straight or gay; attractive or unattractive; educated or uneducated; employed or not employed; religious, agnostic, or atheist; conservative or liberal; or any other thing. I also don’t care what you have done in the past. All that matters to me is that you are a human being, worthy of compassion and respect, by virtue of your existence. I am willing to show compassion to anyone who desires it, and I will help in any way I can.

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, and for the most part, I do not consider such ramblings significant, nor do I try to “get to the bottom” of the accusations. 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. Not everyone thinks the way I do. Not everyone believes the same things I believe. That does not make them any less worthy of compassion, understanding, or help. And so I will continue to give it. Do I get upset and hurt at times? Yes, I do, but I move past it. People are sick; they are hurting. They are often at their wits end and have no one to help them. They are sometimes exhausted and confused. They are often hungry, weak, and not thinking clearly. They have sometimes had awful experiences that have shaped their behavior (for better or worse), and they do not always act (what I consider to be) appropriately. At times, people have weak moments or moments of anger, and they act impulsively. They occasionally do the wrong thing and hurt others. This is regrettable, but is it really unforgivable? Must we jump on every small transgression?

People make mistakes – ALL people make mistakes. We ALL have shortcomings. I have made my fair share of errors in judgment, and I have taken many actions I have later regretted. We ALL have. We are imperfect human beings. But for the most part, we are all striving to get through the day the best way we know how. So, when someone offends you, or mistreats you, or reacts less than perfectly in any way, please try to forgive them. Forgive them because it is the compassionate thing to do. Forgive them because they are perhaps struggling with a background and experiences you know nothing about. Forgive them because they are sick and tired and weak and hurting and lashing out in fear and frustration. Forgive them because they are afflicted with the same cruel disease that has afflicted you. Forgive them because they are human beings. Forgive them because you can and because it will make you a better person.

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. Please let this madness end."