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

Gastroparesis Groups Should Come Together and Be for Support

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

PLEASE SHARE!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Gastroparesis vs. Eating Disorders

I have talked to a lot of GPers (people with Gastroparesis) and they have told me at one time or another, that they were accused of having an eating disorder and was refused treatment. In high school, when I was sick and before I knew what I had, I was accused of pregnancy and then an eating disorder. Some people did get gastroparesis through eating disorders as well. However, I do not think they should be punished nor should we all be punished and refused treatment because of this terrible invisible chronic illness. I am going to share some stories with you that brave women have sent me. Because, they deserve to be heard and the world needs to hear them. They won't be invisible anymore.

This blog article is dedicated to Amy Winehouse, for her struggles, and what she went through.



Meghan writes,

"Hi my name's Meghan. I'm a member of the Gastroparesis Support Group (https://www.facebook.com/groups/GastroparesisSupportGroup) on Facebook. I'm interested in helping with a blog article on GP caused by an eating disorder. I had severe anorexia and bulimia for 15 years. I just got a pacemaker for the GP because the damage done is bad. I was hospitalized 10 times for my ED. My lowest weight has 76 lbs. I developed the GP about 6 years into it and had a bad experience with a GI doc who didn't believe me. My ED morphed. I was purging not because I was scared of gaining weight (I wanted to gain weight!) But the food sitting undigested in my stomach made me feel so sick. So I either wouldn't eat at all to avoid the nausea or when I got starving I would binge and purge. I'm 95lbs now. I'm not mentally in an eating disorder anymore. But the GP symptoms make me scared to eat a lot of the time. I also need partial dentures from the vomiting. I am 32.

I saw your post on the gastroparesis support group on Facebook on the difference between eating disorders and gp. I think I told you a little bit of my story, about how my severe eating disorder caused my gp. The biggest difference for me is that one (the ED) is a battle with the mind and that the other (the GP) is a battle with the body. With an eating disorder I had urges, mental urges, to restrict my food or binge and purge for emotional reasons. With GP the battle is more physical - there is nausea and pain, confusion with being both hungry and full at the same time. But there ARE still emotions connected to GP, like anger and resentment at your body. ('Damnit i love pizza and it's going to cause me to throw up but I'm going to eat it anyway it's not fair I hate this!') The problem I have is drawing the line with that. I can make myself vomit very easily just by clenching my stomach from my years of binging and purging. If i have stomach pain from the GP and know if I make myself vomit I will feel better, do I do it? The emotions attached to our food and body is hard to deal with."

Image from: https://www.google.com/search?tbm=isch&source=hp&biw=1327&bih=728&ei=U6HCWoKqLNKezwK4koeADg&q=gastroparesis+eating+disorder&oq=gastroparesis+eating+disorder&gs_l=img.3..0i24k1l2.579.7841.0.8049.39.22.4.13.13.0.63.829.20.20.0....0...1ac.1.64.img..2.37.860.0..0j35i39k1j0i10i24k1.0.QNC1Y41Uz2k#imgrc=whFN9UO7TBOBTM:"






According to National Eating Disorders (http://www.nationaleatingdisorders.org/general-information):

"Eating disorders -- such as anorexia, bulimia, and binge eating disorder – include extreme emotions, attitudes, and behaviors surrounding weight and food issues. Eating disorders are serious emotional and physical problems that can have life-threatening consequences for females and males."

According to the Mayo Clinic (http://www.mayoclinic.org/diseases-conditions/gastroparesis/basics/definition/con-20023971):

"Gastroparesis is a condition in which the spontaneous movement of the muscles (motility) in your stomach does not function normally."

This is a story from Madison, who writes,

"I was bullied all throughout middle school, because I became friends with a girl who did drugs. She would constantly criticize what I ate, and would throw away my food, and we would go to her house so we could look at pro-ana [sic: anorexia] sites. After she got kicked out of school for using drugs, I didn't really have many friends. I was so in my head all the time and just so focused on my eating disorder. It just continued to get worse and worse until my school forced my parents to take me out of school to get a physical because I became a liability to them. Going to high school was even worse.

I would have panic attacks every day and miss probably half the week. I WAS so tired all the time that I couldn't do my homework, couldn't Do my classwork, nothing. I was too malnourished. In 10th grade halfway through I dropped out and did independent study, which I excelled in.

I abused amphetamines, which made me lose weight faster, and would spend all day at the library so I didn't have to eat. Junior year I decided to go back to school but within the first week the panic attacks started again. I had to go back to independent study.

I got into some legal trouble and my therapist told me that to avoid legal consequences, and dying, I should go to treatment. She was on the phone with my parents forever on a Wednesday and by that friday I was in an Inpatient treatment center. They discharged me at 5 weeks, and going to outpatient was too much for me. I wasn't ready to leave.

I started purging to get back into residential. They let me back in for another two weeks which really did a lot for me to break my behaviours. I successfully completed 6 months of treatment. But, I had awful nausea, dizziness, abdominal pain, and many other GI symptoms.

I turned 18, graduated from high school, and went to college to study psychology. The GI symptoms got worse and worse. I wasn't getting any emotional support. I was still depressed and still incredibly anxious and still wanting to die. Every day. I got a puppy who made me so so happy, and the only reason why I'm still here today. February 2014 I was hospitalized and bunches of tests were ran. It was gastroparesis, cause by my eating disorder. I also have osteopenia from malnutrition. I have fibromyalgia. Every day is a struggle."

I want to applaud these women for coming forward with their stories. We are all accused at one time or another of having an eating disorder so we are overlooked and undertreated. Eating disorders can be just as deadly as gastroparesis, but they are both invisible, chronic illnesses so people assume we make them up for attention. I can tell you that some of my family thinks that my illness is in my head. They think I have bad anxiety and that I have made up this illness for attention, despite tests saying otherwise. I know how it feels to be looked down on and not taken seriously by doctors, family, friends, anyone. That's why I wanted to share these women's struggles and their stories. I'd like to share more.


If you would like to share your story as well, I'd be glad to add it to this article. Please send your story to me at emilysstomach[at]gmail.com. Please let me know if I have permission to use your name or if you want me to change it. I have used real names in this article because I was allowed to. If you have any questions for the ladies above, please ask them on my wall on my Facebook page: www.facebook.com/emilysstomach and I'll see that they get your messages.

They are very brave to come forward for their stories for this article. It doesn't matter how they got GP, what does matter is that they HAVE GP and we are all in this together! No awareness, no research, no cure.


EDIT: If you are looking for help or for others like you, I've created a group to help everyone with their feelings: https://www.facebook.com/groups/GPandEDSupport/ I just wanted some place where we wouldn't judge each other and where we could talk about the things that are bothering us that no one else really understands.

How to Protect Yourself from Gastroparesis Scams

How to Protect Yourself from Gastroparesis Scams

I've been noticing more and more scams that keep popping up in groups I'm in, saying things like if you change your diet and take this pill, your gastroparesis will be cured. A lot of people fall for these scams. I want to prevent that. First off, gastroparesis cannot be cured. It's vagus nerve damage. So, I'm going to spend some time talking about possible things that can slow your motility down even more, like medication, and I'm going to talk about what causes gastroparesis. I would also, at the end, like to offer you ways to protect yourself in case of a scam, because they're all over the place. Just type in "gastroparesis cure" and you'll get youtube videos, websites, all kinds of things. I just don't want any of my friends of my gp family to be taken advantage of because you all mean a lot to me. Without you, I'm not sure I'd have the strength to leave the bed most days. Now, let's talk about this vagus nerve.



That Little Thing Called the Vagus Nerve

Gastroparesis can be caused by a lot of things - abdominal surgery, stomach viruses, diabetes. If you do have nerve damage, the nerve damage will not repair itself. Think of this scenario: you injured your knee playing basketball. You managed to move your kneecap out of joint but kept playing anyway. Then, when you got to the hospital, the doctors fixed your knee but you still have pain. The doctors tell you that you now have nerve damage. If the nerve damage in your knee will never heal, how can the vagus nerve in your stomach ever heal? The nerves that were once functioning aren't functioning anymore.

A pill, diet change, exercise change - sure they can all help manage your gastroparesis but it will never be cured. I'm considering doing a stomach bypass to try and make it so that I can eat before I vomit, tear my esophagus, and bleed to death. So, my doctor is pushing this surgery hard and I'm scared. It's OK to be scared. Gastroparesis may never heal, but you have friends and loved ones who support you. If not, I have a whole list of resources in this blog saying that you do. You can always find me on my Facebook Page: www.facebook.com/emilysstomach. I'd be happy with a "like" too, if you can spare me one. =)

Image taken from: http://www.yoursurgery.com/procedures/duodenum/images/Duod3-A.jpg


Here are some facts about vagus nerves: http://www.md-health.com/vagus-nerve.html


Slower Motility and Gastroparesis Causes

People can't be cured from gastroparesis, except in certain circumstances. There are certain medications that can cause decreased motility function like narcotics, that when you come off of them, your stomach will work again. There are other medications that will do that as well. According to The American College of Gastroenterology (http://patients.gi.org/topics/gastroparesis/) , these are the medications that will slow down motility:

"Narcotics
Tricyclic antidepressants
Calcium channel blockers
Clonidine
Dopamine agonists
Lithium
Nicotine
Progesterone"

Image taken from: http://blog.doctoroz.com/wp-content/uploads/2013/09/pills-multicolored-original.jpg



The website also goes on to state:

"There are many causes of gastroparesis. Diabetes is one of the most common causes for gastroparesis. Other causes include infections, endocrine disorders like hypothyroidism, connective tissue disorders like scleroderma, autoimmune conditions, neuromuscular diseases, idiopathic (unknown) causes, psychological conditions, eating disorders, certain cancers, radiation treatment applied over the chest or abdomen, some chemotherapy agents, and surgery of the upper intestinal tract. Any surgery on the esophagus, stomach or duodenum may result in injury to the vagus nerve which is responsible for many sensory and motor (muscle) responses of the intestine. In health, the vagus nerve sends neurotransmitter impulses to the smooth muscle of the stomach that result in contraction and forward propulsion of gastric contents. If the vagus nerve is injured by trauma or during surgery gastric emptying may be reduced. Symptoms of postoperative gastroparesis may develop immediately, or months to years after a surgery is performed.

It is important to realize that medications prescribed for a variety of conditions may have side effects that cause gastric emptying to slow down. The most common drugs that delay stomach emptying are narcotics and certain antidepressants. Table 1 lists more medications that may delay stomach emptying. If possible, patients having dyspeptic symptoms, vomiting or early fullness should discontinue the offending medications before undergoing any motility tests. Fortunately, gastric emptying resumes and symptoms improve when medications causing ‘pseudo-gastroparesis’ are stopped. It is important to have the names of all your medications recorded and with you when you see a physician for evaluation of gastrointestinal symptoms.
People with eating disorders such as anorexia nervosa or bulimia may also develop delayed gastric emptying. Gastric emptying may resume and symptoms improve when food intake and eating schedules normalize."

Images taken from: http://davaoaccountant.com/wp-content/uploads/2012/11/scam.gif





One of my administrators from my groups, Christy R. said this about scammers in relation to our groups,

"Be sure to friend carefully, if you have issues with sketchy members who may be scammers or else, please message an admin, do not post a public message about it.

That being said, we need to be careful. When you start talking to someone outside of the group in FB messenger or even other means, we don't suggest you do this lightly. (Like mom says, don't talk to strangers!)

Know who you are friending:
-do other people already know them? Common mutual friends?
-does their profile seem authentic (picture of them, information within their profile)
-why are you friending them?
-how long have you been chatting with them inside of the group before messaging them privately.

When you do talk to them, PLEASE:
-do not give out your personal information
-address, middle name, who you live with, kids names, your email address, cell phone number, etc.
-be very careful about the information you share. Once you give it, you can't get it back.

That said, if you find someone you're talking to is asking too many questions, or is making you uncomfortable, please message one of the admins at the bottom of the post. We would appreciate that versus posting publicly. Thanks!"

According to MoneyExpert.com: There are 30+ ways to stop scams. You can read them on their site at: https://www.moneysavingexpert.com/shopping/stop-scams/

It is wonderful information that will help you with cold calls, internet scams, social media scams, email scams, etc. Please read it.




According to Facebook this is how to avoid spam and scammers,

"Scams on Facebook happen when people create fake accounts or hack into existing Facebook accounts or Pages you've liked. The scammers use these fake or compromised accounts to trick you into giving them money or personal information. If you've received a message that you believe is a scam, you should avoid responding and report the message to Facebook.


Here are some common scams to watch out for:

Romance scams: Romance scammers typically send romantic messages to people they don’t know, often pretending to be divorced, widowed or in a bad marriage. They'll engage in online relationships in hopes of receiving money for flights or visas. Their goal is to gain your trust, so the conversations may continue for weeks before they ask for money.

Lottery scams: Lottery scams are often carried out from accounts or Pages impersonating someone you know or an organization (such as a government agency or Facebook). The messages will claim that you're among the winners of a lottery and that you can receive your money for a small advance fee. The scammer may ask you to provide personal information, such as your physical address or bank details.
Loan scams: Loan scammers send messages and leave posts offering instant loans at a low interest rate for a small advance fee.

Access Token Theft: A link is shared with you that requests access to your Facebook account or Page. The link may look like it came from a legitimate app, but instead it is a way that spammers can gain access to your account and spread spam.


To protect yourself from scams, watch out for the following:

People asking you for money who you don’t know in person

People asking you for advance fees to receive a loan, prize or other winnings

People asking you to move your conversation off Facebook (such as a separate email)

People claiming to be a friend or relative in an emergency

Messages or posts with poor spelling and grammatical mistakes

Pages representing large companies, organizations or public figures that are not verified verified

People or accounts directing you to a Page to claim a prize"

Here Are Ways to Protect Yourself Against Scammers


I just want you to be able to protect yourself from these scams. We're all lonely, miserable, and this illness is hard to live with. But, we can still look out for each other and not fall prey to these scams. So, if you see one in your group or on a page, please report that person to an admin and/or facebook.


Here are some ways to protect yourself against scams from Scam Watch (http://www.scamwatch.gov.au/content/index.phtml/tag/howtoprotectyourself):

"How to protect yourself. Almost everyone will be approached by a scammer at some stage. Some scams are very easy to spot while other scams may appear to be genuine offers or bargains. Scams can even take place without you doing anything at all.

Most scams need you to do something before they can work. You may send money to someone based on a promise that turns out to be false. You may give your personal details to people who turn out to be scammers. Some scams rely on you agreeing to deals without getting advice first or buying a product without checking it out properly.

The simple tips below will help you protect yourself and your family from scams. Scams can cost people a lot of money and cause a great deal of distress. By following these simple tips, you can protect yourself against scams.



Golden rules

If it looks too good to be true—it probably is.
ALWAYS get independent advice if an offer involves significant money, time or commitment.
Remember there are no get-rich-quick schemes: the only people who make money are the scammers.
Do not agree to offers or deals straight away: tell the person that you are not interested or that you want to get some independent advice before making a decision.
You can contact your local office of fair trading, ASIC or the ACCC for assistance.
NEVER send money or give credit card or online account details to anyone you do not know and trust.
Check your bank account and credit card statements when you get them. If you see a transaction you cannot explain, report it to your credit union or bank.
Keep your credit and ATM cards safe. Do not share your personal identity number with anyone. Do not keep any written copy of your PIN with the card.



Digging a little deeper

Do not let anyone pressure you into making decisions about money or investments: always get independent financial advice.
Read all the terms and conditions of any offer very carefully: claims of free or very cheap offers often have hidden costs.
Make sure you know how to stop any subscription service you want to sign up to.
Be very careful about offers for medicines, supplements or other treatments: always seek the advice of your health care professional.
Remember there are no magic pills or safe options for rapid weight loss.
Beware of products or schemes that claim to guarantee income or winnings.
If someone offers you an investment or other financial service, ask for their Australian Financial Services Licence number: check this with ASIC.
Be wary of investments promising a high return with little or no risk.
Beware of job offers that require you to pay an upfront fee.



Protect your identity

Only give out your personal details and information where it is absolutely necessary and where you have initiated the contact and trust the other party.
Destroy personal information, don’t just throw it out. You should cut up, burn or shred old bills, statements or cards so scammers can not get your personal details from them later.
Treat your personal details as you would treat money: don’t leave them lying around for others to take.
Order a free copy of your credit report every year to make sure no one is using your name to borrow money or run up debts.



Sending or transferring money

Never send money to anyone you are not totally sure about.
Do not send any money or pay any fee to claim a prize or lottery winnings.
Money laundering is a criminal offence: do not agree to transfer money for someone else.
Make sure that cheques have been cleared by your bank before transferring or wiring any refunds or overpayments back to the sender.
Do not pass on chain letters or take part in pyramid schemes: you will lose your money and could lose your friends.



Dealing with a face-to-face approach

If someone comes to your door, ask to see their identification. You do not have to let them in and they MUST leave if you ask them to.
Contact your local fair trading agency if you are unsure about an offer or trader.
Remember that family members and friends may try to involve you in a scam without realising that it is a scam: you should seek independent advice (from a lawyer or financial adviser).



Telephone traps

If you receive a phone call out of the blue, always ask for the name of the person you are speaking to and who they represent.
Do not give your personal, credit card or online account details over the phone unless you made the call and the phone number came from a trusted source.
It is best not to respond to text messages or missed calls that come from numbers you don’t recognise.
Be careful of phone numbers beginning with 190. These are charged at a premium rate and can be very expensive.
Look out for SMS and MMS numbers that start with 19. These are charged at a premium rate (sometimes even for receiving a message) and can be very expensive.



Dealing with suspicious or unsolicited offers sent by email or SMS

Do not open suspicious or unsolicited emails (spam): delete them.
Do not click on any links in a spam email or open any files attached to them.
Never call a telephone number that you see in a spam email or SMS.
NEVER reply to a spam email or SMS (even to unsubscribe).



Internet tips

Talk to your internet service provider about spam filtering or, alternatively, purchase spam-filtering software.
If you want to access an internet account website, use a bookmarked link or type the address in yourself: NEVER follow a link in an email.
Install software that protects your computer from viruses and unwanted programs and make sure it is kept up-to-date.
Beware of free websites and downloads (such as music, adult sites, games and movies). They may install harmful programs without you knowing.
Check the website address carefully. Scammers often set up fake websites with very similar addresses.
Never enter your personal, credit card or online account information on a website that you are not certain is genuine.
Never send your personal, credit card or online account details by email.
Try to avoid using public computers (at libraries or internet cafes) to do your internet banking.
Do not use software on your computer that auto-completes online forms. This can give internet scammers easy access to your personal and credit card details.
Choose passwords that would be difficult for anyone else to guess.



Protecting your business

Never give out or clarify any information about your business unless you know what the information will be used for.
Never agree to any business proposal on the phone: always ask for an offer in writing.
Try to avoid having a large number of people authorised to make orders or pay invoices.
Always check that goods or services were both ordered and delivered before paying an invoice.
Make sure the business billing you is the one you normally deal with.
If you are unsure about any part of a business offer, ask for more information or seek independent advice.



Keeping children safe online: Cybersmart

The Cybersmart program is a national cybersafety education program managed by the Australian Communications and Media Authority (ACMA). It provides a comprehensive range of information, resources and presentations designed to meet the needs of children, parents, teachers and library staff.

The ACMA Cybersmart website is home to all its cybersafety resources, research and activities. For more information, visit Cybersmart or contact the Cybersafety Contact Centre on 1800 880 176."

Source: https://www.moneysavingexpert.com/shopping/stop-scams/





According to the AARP,

"Protect Yourself From Facebook Scams
Cybercrooks use the popular 'like' button against you
by Sid Kirchheimer, AARP Bulletin


Each day, Facebook users click the “Like” button about 3.2 billion times. And cybercrooks love that. Increasingly, they’re using the upward thumb as bait in some of the most common scams on the huge social network.


Social Media Scams

These include postings by false friends who seek money by claiming they’re stranded overseas, bogus account verification notices and cancellation warnings supposedly coming from Facebook (just like phony notices from your bank).

'There are two goals in most social media scams: to spread quickly and to make money,' says Gerry Egan of Norton online security products, who recently conducted a study of Facebook scams. With those billions of clicks per day, Like buttons help achieve that prompt and widespread propagation, particularly as Facebook users get wise to traditional social media scams.

In reviewing the current top Facebook scams, Norton experts detected 8.5 million attacks against customers using its software in the year that ended May 1. The two most common ploys employed Like button leverage.


Here’s how:

Clickjacking. It’s like hijacking, only it’s a click of the Like button that the bad guys seize control of.

In one common version, you’re offered a chance to watch an enticing video. Click on the 'Play' button and you’re really clicking on an invisible 'Like' button that’s hidden behind it. You may now be taken to a page that announces you have to disclose personal information before you can watch the video. Provide it and still there’s no video — you’re taken instead to other pages to complete online surveys or be pitched dubious products.xEach day, Facebook users click the 'Like' button about 3.2 billion times.

Meanwhile, your Like is registered on your Facebook page, so your friends think you’ve watched the video and thought it was good. When they click 'play' to try to check it out, the same sequence of events happens to them.

The scammer, meanwhile, is collecting a commission from shady merchants for every 'Like' referral that’s generated.

So the two-part goal is achieved: Spread quickly and make money.

Meanwhile, the offer of cool videos is also a common method of spreading 'malware,' programs that do nasty things once they enter your computer. You’ll know you’ve been targeted this way if a pop-up appears saying you need to install special software to watch a video, says Egan. Don’t do it.



'Like'-baiting. Unlike clickjacking, this ruse gets you to knowingly click a 'Like' button. The goal is the same: squeezing personal information out of you to create commissions for scammers. But rather than a phony video, the incentive is usually free tickets or an entry into a drawing, says Egan. 'Instead of stealing your click, they get you to provide it voluntarily by promising free gifts.' And of course the gifts don’t materialize.



To protect yourself against these and other Facebook scams:

Be cautious about hitting that Like button, as well as placing too much personal information on your Facebook page. If you post pictures about a recent ski trip, for instance, you may be contacted by cybercrooks offering free lift tickets as part of a 'Like'-baiting ploy.

Don’t trust Likes by others. 'Especially when you get a notification from a friend that seems out-of-character, call that person before you click,' suggests Egan.

Use Facebook-specific settings on your security software. You may not know it, but many products offer protection customized to viruses and malware found on the social network site."

According to Chartered Training Standards Institute,

"Scams[sic] Awareness Month 2018 is taking place throughout the month June. Partnership work is key to this campaign. Both locally and nationally, we have seen the biggest impacts when working together with other organisations to spread the message and increase the effectiveness of our engagement with the public. This briefing has been created to provide you with the information on how you can get involved in this year’s campaign. Further details will be available in the coming weeks.

General background
Scams Awareness Month is an annual opportunity to raise awareness and take a stand against the crimes and predatory practices which affect millions of people. Citizens Advice research shows that almost three-quarters (72%) of people surveyed had been targeted by scammers over a two year period (2015-2017). Over a third, had been targeted five or more times.

In order to increase the effectiveness and engagement of the campaign last year, a number of new approaches were implemented such as using behavioural insights, targeted communications strategies and folding in a user-needs approach. Evaluation for 2017’s campaign shows that not only was this new approach well received by partners and campaigners, it showed a marked increase in engagement of target groups such as young people.

This year’s campaign Following the success of last year’s campaign will be aiming to re-promote de-stigmatisation and encourage more reporting of scams. Scams are a growing problem. In the latest year figures from the CESW (Crime Survey England and Wales - year to Sept ‘17), there was a 7% increase in the number of fraud offences recorded in England and Wales (662,519) compared with the previous year. This continues the year-on-year increases seen over the last five years. The increase was largely owed to offences reported to Action Fraud, which rose by 18%.

While this may be attributed to the effectiveness of the awareness raising campaigns focus on reporting, it highlights the importance of Scams Awareness Month. There continues to be a need to encourage reporting and tackle the stigmatisation of being scammed."

Frequently Asked Questions Regarding Gastroparesis

Frequently Asked Questions about Gastroparesis


1. What is Gastroparesis?

The Mayo Clinic defines Gastroparesis as, “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.”

Link found here: http://www.mayoclinic.com/health/gastroparesis/DS00612



2. How do you get Gastroparesis?

The Mayo Clinic Writes, “It's not always clear what leads to Gastroparesis. But in many cases, Gastroparesis is believed to be caused by damage to a nerve that controls the stomach muscles (vagus nerve). Other possible causes are abdominal surgery, Diabetes, Idiopathic (no known cause), a virus, and being born with a stomach that function properly. It can also be cause by narcotics because they can slow down motility.” On a personal note, mine was due to a stomach virus. I was in the hospital for eight days.

Link can be found: http://www.mayoclinic.com/health/gastroparesis/DS00612/DSECTION=causes



3. What are the signs and symptoms of Gastroparesis?

The Mayo Clinic states that,
“Signs and Symptoms of Gastroparesis:
Early Satiety (feeling full after just a few bites)
Heartburn
weight loss
weight gain
Abdominal bloating
Abdominal pain
Diarrhea
Constipation
Erratic blood glucose levels (mainly in diabetes)
Lack of appetite
Gastric reflux
Spasms of the stomach wall
Chronic nausea
Vomiting (often of undigested food)
Inability to tolerate dietary fats.”

Link can be found here: http://www.mayoclinic.org/diseases-conditions/gastroparesis/basics/symptoms/con-20023971



4. How do you treat Gastroparesis?

The Mayo Clinic writes, “Treating gastroparesis begins with identifying and treating the underlying condition. For instance, if diabetes is causing your gastroparesis, your doctor can work with you to help you control your diabetes.”

I have written a blog entry on how to cope with emotional and physical pain of Gastroparesis. Here is an excerpt,

“This is a question that I've been asked a lot. I have been doubled over in pain, with no relief in sight. So, how do I cope and what do I do to make the pain easier to handle?”

You can find the ways to treat Gastroparesis here, without narcotics. Link here: http://emilysstomach.blogspot.com/2013/04/how-to-cope-with-gpdtp-pain-emotionally.html

This link will also help you if other treatments don’t seem to work: http://emilysstomach.blogspot.com/2013/04/what-can-be-done-when-gastroparesis.html

This link will help you with natural remedies for pain around the house: http://emilysstomach.blogspot.com/2013/04/painkillers-in-your-kitchen-alternative.html

5. Can you die from Gastroparesis?

Yes. If it gets severe enough people can get very malnourished and without proper treatment options and proper nutrition people can die from complications from Gastroparesis. Gastroparesis alone cannot kill you but it can do horrible things to your body if you are starving.

Link: http://emilysstomach.blogspot.com/2012/10/18-year-dies-from-gastroparesis.html

6. Does Gastroparesis go away?

The only way Gastroparesis will go away is when it’s been caused by narcotics or medication. Nerve damage and muscle damage is typically permanent.

See webMd on nerve damage: http://www.webmd.com/brain/nerve-pain-and-nerve-damage-symptoms-and-causes

7. Is there a cure for Gastroparesis?

The Mayo Clinic says, “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.” You have to eat low fiber and low fat foods. I have several gastroparesis friendly recipes on Pinterest and also juicing recipes: www.pinterest.com/chikensrule


Link found here: http://www.mayoclinic.com/health/gastroparesis/DS00612



8. What should you need to know after being diagnosed with Gastroparesis?

I know that when I was finally diagnosed in March of 2012, I did two things that really helped me. The first thing I did was start this blog. I started it to keep track of my medical information, visits, testing, and everything else that I wouldn't remember later. My main goal was to help people through my own experiences so that maybe they wouldn't repeat things that I have done in the past like listening to bad advice from doctors. I was put on two medications that actually did the same things AND they slowed down motility! I also know that through my research, there's not really a whole lot on the internet about Gastroparesis or support groups. So, I made this entry to put all of my research in one place for people who may need support groups. My article with online resources has since been used by United Healthcare as an electronic resource for GP/DTP.

More ideas can be found on the link here: http://emilysstomach.blogspot.com/2013/04/advice-for-newly-diagnosed-with-gpdtp.html

Also, here: http://www.emilysstomach.com/2013/04/youve-been-diagnosed-with-gastroparesis.html

9. What is the Gastroparesis Diet?

The Gastroparesis Diet can be found here: http://www.emilysstomach.com/2014/01/the-gastroparesis-diet.html




10. Is there more than one type of Gastroparesis?

Yes, there are! There are two types of Gastroparesis. The first is idiopathic gastroparesis, which means the doctors are not sure what caused it. The next one is diabetic gastroparesis, where diabetic neuropathy or other causes can trigger gastroparesis by damaging the vagas nerve (http://en.wikipedia.org/wiki/Vagus_nerve).

Link here: http://en.wikipedia.org/wiki/Gastroparesis



11. Where can I find assistance to help me with finances with Gastroparesis?

I have compiled a list of financial ideas for those currently struggling with money for treatments with the help of the Emily's Stomach's Facebook Page. The blog entry has links in all caps that you can click on that will take you to that page.


The link is: http://emilysstomach.blogspot.com/2013/04/financial-assistance-ideas.html



12. Why are the Gastroparesis colors green and yellow?

As taken from G-PACT’s Facebook Page: From G-PACT's Facebook Page:

"Most people think that green and yellow became the colors for DTP because green is associated with nausea, vomit, bile, and a greenish appearance when sick. Actually, G-PACT places a stronger meaning behind the colors. We gave them a lot of consideration when we selected them to be the official colors for our use to represent gastroparesis. They represent how we want patients to see the future and what we are all trying to accomplish with hope, strength and growth towards better treatment options. We have seen a lot of growth in this field since our founding in August of 2001, so the green is appropriate. Why?

Green indicates growth. We are growing towards a cure and awareness and research is growing. It's a color of hope. When things start turning green outside it indicates the end of the cold, long, dark days of winter. The first sign of green plants and grass indicates we are coming out of a time if darkness and coldness and entering a phase of growth and brightness. It is a color that shows brighter and beautiful days are ahead. There is something really encouraging when you see that first blade of green grass or green leaf peaking [sic] through after months of brown fields, trees, and no growth.

G-PACT is a grassroots organization meaning that we started with a small handful of patients who were coming out of a period where there was very little knowledge and very little hope towards any kind of understanding or a cure. We knew something needed to be done to provide services to patients to get through the tough times now, and provide hope as we also fight for awareness and research and help bring about greater understanding into this condition. Our initial motto was "Striving towards brighter days of treatment, knowledge, and a cure." We have grown into a much larger scale, now making an international impact and have provided hope to so many as they try to cope until we do find the cure.

Yellow was also an important color for us. Our logo is a sun to indicate hope and a brighter future ahead. The sun is a crucial factor that helps the plants grow. It brightens the days and brings with it the nutrients, strength, and oxygen needed to supply the plants with what they need to be able to grow and thrive."

Handling Holidays with A Chronic Illness

I know this time of year is really rough for all of us. As someone with GP, I cannot eat like normal people do on thanksgiving. I plan to cook for my family and friends, but I was wondering how to deal with the fact that I can't eat like normal people and what to do about it. I did some research and found some articles that might help the chronically ill deal with this issue. Additionally, I found some information for family members who always tell us to eat something or try to force us to eat when we are unable to. I hope this will help everyone a bit.

Image taken from: http://images.wisegeek.com/sad-dark-hair-woman.jpg


WebMD (http://www.webmd.com/balance/features/chronic-illness-holidays) gives us a wonderful source for how to deal with the holidays and loved ones as well. The key seems to be planning ahead and communicating your illness and requirements in advance to family and loved ones:

"Rosalind Joffe, MEd, once hosted a Thanksgiving dinner for 22 people at her house. She planned it months in advance. She hired someone to clean. She created a menu and delegated various dishes to guests. A friend came over the day before the holiday to set the table. Relatives were assigned jobs to serve dinner and clean up afterwards. Joffe has the planning sense of Martha Stewart. She also has multiple sclerosis (MS) and ulcerative colitis.

While it was challenging to host Thanksgiving, she says she'd have felt worse if she hadn't. "The key was advance planning," she tells WebMD. "What I've learned is if I ask for help in advance, even with my own family, people don't feel put upon. They feel they're a part of the event."

Joffe is among the many people living with chronic illness -- defined as lasting more than three months, being persistent or recurrent, having a significant health impact, and typically being incurable. So, with Christmas and Hanukkah at hand, times when everyone is supposed to participate and feel cheerful, what are some strategies for coping?



Do Holidays Make Chronic Illnesses Worse?

There's always the temptation to abandon healthful living routines around the holidays. Eating too much, not getting enough exercise, staying up late, worrying about family members getting along -- all these things can make you feel worse. But do they negatively affect your health?

Joffe, who coaches people with chronic illness in the Boston area to thrive in the workplace, says it depends on the disease. "With diabetes, heart conditions, or epilepsy, for example, you must take care of yourself or the disease gets worse. With autoimmune diseases, such as MS, fibromyalgia, or lupus, your symptoms will get worse but not the disease itself."

What about the holiday blues? Do the holidays really bring on episodes of depression? Michael Thase, MD, during a WebMD Live Event, said geography could play a role. "As people living in the northern hemisphere, we seem to be somewhat more prone to development of depression in the fall and winter months. The fact that this period of risk coincides with our holidays is kind of like a bad coincidence. For example, I'm not sure that I've encountered any writing about the holiday blues in New Zealand, Australia, or South Africa."



Speak Up

"Holidays act like a lightning rod where all the physical and social concerns around chronic illness get really highlighted," says Patricia Fennell, MSW, LCSW-R. She explains that the demands and expectations around holidays can "out" people whose conditions were hardly noticeable. During the year, they spend so much of their energy working and handling the daily chores of living that they have little time left for socializing. Come the holidays, they're expected to show up and contribute.

"Many chronic illnesses, such as diabetes, depression, arthritis, fibromyalgia, etc., are 'invisible,'" Fennell says. "People go to work or volunteer or shuttle kids to school. Most of the time, they don't look sick. When illness flares up, their pain is invisible. Or they have bone-numbing fatigue, so bad that they can't take a shower and go to the store in the same day. There's a cultural misperception that says you're not sick unless you look sick. They need to make their illness visible by talking about it."

Fennell, who is president and CEO of Albany Health Management, Inc., in Albany, N.Y., coaches patients on how to negotiate needs. "People don't know how to ask for what they need. They'll stay home from a holiday party because they can't stand that long. We need a new social etiquette for people with chronic illness."



Party Strategies: Ask for What You Need in Advance

Fennell describes a typical holiday scenario. "You're invited to Aunt Jane's. Let her know that you'll do your best to attend her party, but that if your illness flares up, you may have to bow out. Ask her how much lead time she needs. She'll say, 'Anything's fine.' Tell her you'll call her 48 hours in advance to let her know. Uncle Bob will still be annoyed if you don't come, but if you predict that you're unpredictable, people will generally handle it better."

She advises stating your needs in behavioral rather than general terms. "Don't just tell Aunt Jane you'll have to leave early. Tell her you've been feeling fatigued and can stay only two or three hours. Also tell her that standing tires you out, and ask her to have a seat for you. Putting it in behavioral terms makes it easier for Aunt Jane to conceptualize and to accommodate."

Many hosts and restaurants have become accustomed to considering various dietary needs for guests who have heart disease or diabetes or another condition that requires a restricted diet. "They should be offering options for people," Fennell tells WebMD. "If you don't know what's being served, carry a large handbag with snacks and water, or offer to bring a dish that can be shared with others."

When you're the host, whatever you do don't wait till the last minute to ask for help, says Joffe. "You may not get the help you need. And if people do help, they might resent it. Become an expert at planning. Asking in advance allows people to help gracefully."



Managing the Handicap Parking Space

Shopping and gift giving present special challenges, not the least of which is managing the mall. If your illness is invisible, the challenge can start when you get out of your car. Some less-than-jolly shopper who parked way out in left field will let you know that you have no business parking in a handicap space. Try to think of a humorous retort, like that of a cancer patient who plucks off her wig and smiles.

Joffe advises not letting presents and errands get out of control. "Many people with chronic illness aren't in the best financial situation but don't have the energy to shop for bargains. Plan in advance. Take a day off work so you can shop yet avoid the weekend crowds. The key is what matters most to you. Is it going into your bank account? Would a simple note do? Don't go into lock-step motion."



Ways to Relieve Holiday Stress

An article in Arthritis Today offers three tips for managing holiday stress:

Daily rest and relaxation. Don't get stuck in a never-ending to-do list. Do a crossword puzzle or take a walk or a nap. The mental and physical break will rejuvenate you.

Prioritize. Decide how much shopping, cooking, or partying you can do and stick to it. Ask for help.

Volunteer. Take toys to the Marine Toys-for-Tots Foundation, take food to homebound seniors through Meals on Wheels, or provide goods and services for Hurricane Katrina victims. It will boost your spirit and remind you what the holidays are about.

Patch Adams, MD, the real doctor whose life was the basis of the Robin Williams' movie, would agree that volunteering is good for you. He heads the Gesundheit! Institute in Arlington, Va. It's the umbrella organization for his work to raise funds for a variety of projects, including the building of a free hospital in rural West Virginia.

He tells WebMD, "My best advice for someone with chronic illness coping with the holidays is to work out with their families not to give presents, but instead to give money to local families who are poor, and consume half of what they normally consume. Make it about the spirit of giving."

The numbers of people with chronic illness are growing, and that's not necessarily a bad thing, says Fennell. "People are living today with heart disease and cancers that were once considered terminal illnesses, not chronic illnesses."

The growing numbers also mean you're not alone. Next time you go to a holiday party, look around. Some of those healthy looking people may have chronic illnesses, too."

Image Source: On Image.









This part is for your loved ones, family and friends and dealing with your loved ones, family, and friends. It's to help them understand what we go through and what they can do for the chronically ill. This source does talk about making food for your chronically ill loved one, but with GP, that can be a challenge. We have a very strict diet but you can modify this article to match up with your loved one's dietary restrictions.




According to Kevin M.D. (http://www.kevinmd.com/blog/2011/11/living-chronic-illness-holiday-season.html):

"In the U.S., we’re getting ready to celebrate Thanksgiving. Soon, people around the world will turn their attention to the holiday season. Chronic health problems can take a toll on relationships any time of the year. Most people have to experience unrelenting pain or illness themselves before they understand how debilitating it is, physically and mentally. Loved-ones (by whom I mean family and close friends) may be in some form of denial about what’s happened to you, or they may be scared and worried about the future. Bottom line, suffering from a chronic condition can be an ongoing crisis—for you and for those you’re close to.

That crisis can come to a head during the holidays when people’s expectations of one another are high and when stress levels for everyone are likely to be off the charts for any number of reasons—health, financial, relationship issues. If you’re like me, during the rest of the year, you carefully limit interactions with others in order to manage your symptoms; on a typical day, your most complex decision may be to choose between showering and shopping! But when the holidays arrive, you’re suddenly thrust into the middle of a lively and chaotic social scene where you’re expected to participate in a range of activities, often for days in a row. A bit of advance warning to loved-ones can go a long way toward minimizing stress levels over unrealistic expectations.

I know that this piece won’t apply to everyone. One of the heartbreaking consequences of living with chronic pain and illness is that some people are unable to be with loved-ones at all during the holidays, either because people are too disabled by their pain or illness to be able to gather with others, or because family and close friends having drifted out of their lives. I know the pain of that isolation; I’ll be writing about it in my next piece.

For those of you who are able to gather with others, the holidays can be a recipe for double disaster—the increase in activity exacerbates your physical symptoms, while coping with sadness, frustration, and maybe even guilt about your physical limitations gives rise to emotional pain. No wonder many people with health problems dread the approaching holidays.

If you’re one of the many people with chronic health problems who don’t look sick, the initiative is with you to make your condition visible. Here are some suggestions for helping loved-ones understand what your life is like and for giving them a heads-up on what to expect from you during the holidays.



Share information with them from the Internet or from books

Often the best way to educate loved-ones about chronic pain and illness is to use a neutral source because it takes the emotional impact out of the communication. A quick web search will yield a host of organizations devoted to every conceivable medical problem. Print out select pages or forward a few links to family and close friends. Alternatively, if you have a book about your condition, photocopy the pages that cover what you’d like them to know about you. In your accompanying note, keep it “light”—you could joke that “there won’t be a test.” But also make it clear that this favor you’re asking is important to you.



Write a letter

Many years ago, two friends of mine were in couples therapy. They weren’t able to speak to each other about their marital problems without one of them shutting down emotionally and the other reacting by shouting recriminations. Their therapist told them to write letters to each other expressing their feelings and their concerns about the marriage. It turned out to be a major first step in healing their relationship.

If you decide to write a letter, be sure it’s not accusatory. In composing it, use the word “I” more than the word “you.” Without complaining, express how difficult it’s been for you to adjust to this unexpected change in your life and how you wish you could be as active as you once were during the holidays.

You could briefly describe what your day-to-day life is like, including how unpredictable your condition is which means that you can’t know for sure how you’ll feel on the day of the actual gathering no matter how much you rest in advance. (This is the hardest concept for most loved-ones to comprehend—that we can spend weeks before a big event in full “rest mode,” but still feel very sick when the day arrives.)

I would end by telling them what to expect from you during the holidays—that you may have to skip some events, that you may have to excuse yourself right after eating to go lie down, that you may have to come late and leave early. In my experience, spelling out my limitations ahead of time is helpful not just to others, but to me, because I find it much easier to exercise the self-discipline it takes to excuse myself from a room full of people if I know that at least some of them are already expecting it.

P.S. It will be tempting to send an email, and if you have a lot of people you want to communicate with, it may be the most feasible way to reach everyone. But one thing’s for sure: people will read a handwritten letter, antiquated document that it’s become!




Find that ONE ally and enlist his or her help

If you have just one close friend or family member who understands what you’re going through, enlist his or her help in explaining your condition and your limitations. Before the holidays start, you could ask your ally to talk to loved-ones on your behalf or to be present when you talk to them. Ask your ally to be supportive if you have to excuse yourself in the middle of a gathering, or even to let you know if you’re wilting (as we call it in my household). It’s so helpful for me to be “prompted” by my ally because, when I start to overdo things, adrenaline kicks in which fools me into thinking I’m doing fine. But using adrenaline to get by just sets me up for a bad crash later on.

Your ally may be a close friend or family member who’s just waiting for you to enlist his or her help. Think long and hard before you decide there’s no such person in your life.




In the end, you may have to recognize that some loved-ones may never accept your limitations

Some family and close friends may refuse to accept that you’re disabled by pain or illness. I know this from personal experience and it hurts. Try to recognize that this inability is about them, not you. Don’t let their doubt make you doubt yourself. Your medical condition may trigger their own fears about illness and mortality, or they may be so caught up in problems in their own lives that they’re not able to see their way clear to empathize with you.

Just as you can’t force people to love you, you can’t force people to accept you. But getting angry at them just exacerbates your own symptoms. That’s why it’s important to protect yourself from allowing their lack of understanding to continually upset you. Think of it as protecting yourself from another chronic condition: chronic anger.

The physical suffering that accompanies chronic pain and illness is hard enough to endure without adding emotional suffering to it. When I feel let down family or close friends, the first thing I do is acknowledge how much it hurts. Then I reflect on the many possible reasons for their behavior. Finally, I work on genuinely wishing them well. These three steps immediately lessen my emotional suffering.

As you experiment with these suggestions, treat yourself kindly. Don’t blame yourself if one of them doesn’t work out. Instead, give yourself credit for having had the courage to try! My heartfelt wish is that your loved-ones come to understand and accept your limitations, but that if they don’t, you’ll be able to accept them as they are without bitterness."

According to EmpoHER (http://www.empowher.com/wellness/content/helping-chronically-ill-over-holidays):

"One of the unique problems that comes with chronic illness is that ... it lasts so long.

Some chronically ill people are fortunate to have a solid support network of family and friends. For others, things are very different.

If there were people interested in helping, while they may have been dedicated and compassionate at first, the long haul proved to be too long. The sprint they could run was too short for the marathon of chronic illness.

Many of us have outlasted our helping companions and carry on down the bleak road alone.

Do you know someone who is alone this holiday season? Maybe you can't commit great blocks of time or resources to their care and comfort.

But if you can spend a little time, and maybe even a little money, and you just need some suggestions, you're headed in the right direction.

You don't have to look for big things to make a difference for many who are chronically ill.

Things that you may take for granted, that seem like no big deal in your own life can be things that have stumped the chronically ill with a wall of impossibility for a long time.

Ever made lunch? Fixing something for your friend will not only brighten their day with your caring actions, it will also take care of a practical problem.

Some people who are chronically ill must spend most of their energy putting a meal together, needing to recuperate for the rest of the day afterward. Others just end up not eating.

Washing laundry, sticking it in the dryer and doing some folding are simple chores. Having a friend come over to go through these paces can bring a sense of order to a home that may be short on that quality.

Clean clothes, especially when they've been hung up and placed in drawers, bespeak affection and closeness for someone who may not feel that very often. Not to mention, you will save them their little energy quota for the day for other things.

When you have to run to the store, perhaps you could call or stop by to see if your friend needs anything as well. One trip, two sets of errands accomplished. Less stress and pressure on your friend, and you go home feeling like you've made a difference.

This time of year, snow can be a going concern in many areas of the country. Chances are your friend can't lift a shovel let alone clean a walk or driveway.

Whether we're talking about a shovel, a snowblower, or a snow plow -- whether you do the job yourself or pay someone else to do it -- removing their snow can also remove the burden of being faced with an insurmountable task.

And if you'd like some hot chocolate afterwards, you could come in and spend time with your friend ... and make hot chocolate for both of you.

The possibilities, really, are endless if you want to help someone who is chronically ill. The holes in their abilities and resources are often vast and widespread.

Do it for the holiday season, or just do it for a friend whose daily existence may be tougher than you can begin to fathom."

Dealing with isolation can be a huge problem for gastroparesis patient and also the chronically ill. Many of us are too sick to go out anywhere or even be around food. In that case, the source below will give you some tips on what to do when you're isolated during the holidays.






According to You Don't Look Sick (http://www.butyoudontlooksick.com/articles/guest-writers/tip-handling-isolation-that-comes-from-chronic-illness/):

"The title is ominous, I know. But for so many of us that suffer from chronic illnesses, it’s an all too true reality. I must preface this by saying that not all people who suffer with a chronic illness experience this. However, the subtleties of it grow as time passes and one is confronted with the reality of it, be it large or small, at some point in their lives.

It may be as small as the awareness of the decrease of invitations by friends due to our physical limitations. For some, that awareness grows to a more glaring, in your face, epiphany that friends that were always there before suddenly wish no part in your life…excuses a plenty. It’s not even relegated to just friends. Family roles play a big part of isolation experiences for the chronically ill. Those closest to us are often the ones to fall into one of two categories. Faithfully standing by no matter what or those that turn a blind-eye and deaf-ear to our honest answer to their question, “How are you?”

It’s important for the chronically ill to have a plan to handle times of feeling isolated. This is true whether you’re feeling isolated now or think it’s a possibility for your future. The realities of life are handled better if we understand the possibilities and have a plan on ways in which to deal with such times. Let’s talk about some ways to handle isolation times in your life.

We’re blessed to live in a time of the information super highway. Social network sites make it much easier to remain in our homes, if needed, yet still be interactive on a day to day basis. Whether it be local friends and family or online acquaintances, it’s there for our using and can keep us connected to the real world. Some suggestions might be the bydls.com on facebook or the butyoudontlooksick.com message boards

Not only do we have a multitude of e-social activities to participate in, we have a vast array of research at our fingertips. We can be pro-active in our medical care simply by spending time doing a bit of our own educating.

Can we say real life support groups? If ever there was a source of interaction for the chronically ill and isolated, it’s support groups. Some of the most wonderful people you’d ever want to meet are in a support group and can truly say, “Been there, done that!” Or, they say nothing at all but have golden ears to listen with.

Blogging is one of my favorites. It’s like your online diary. I like to be able to express myself, and even my feelings of isolation, in words. Many blog sites can be set to private so that no one, other than those you want, can read them. Many of the aforementioned support group sites offer their own blog space just for you. You never know when someone will read your blog and be totally blown away by the knowledge that someone else is going through exactly what you are.

So, you see, isolation doesn’t have to take over. Yes, there are times where quiet reflection is needed but no longer do we have to draw back into a dark place in our minds where loneliness rules. Like the old yellow pages ad said, “Let your fingers do the walking!” Get out there via the internet and keep in touch with friends and family. Find new friends that can relate to what you’re going through and can offer hope, encouragement and support that you may not have otherwise. It’s a good choice to make and certainly a good way to handle isolation for the chronically ill."

I really hope this article will help you deal with the holiday stresses. I know all holidays are centered around food, and it's hard to ignore. But, remember, even though the holidays are tough, YOU ARE TOUGHER!