Spreading Positivity in the GP Community: Healing the Rift

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

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


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


I have a list of gastroparesis resources here: HERE.


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

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

Therefore, this needs to end.

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


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


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


No awareness, no research, no cure.


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

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

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





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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

GP Surivial Commandments

Recently, I polled people from around different support groups and pages to ask their advice on what they did when they first realized that they had GP/DTP. I asked, "if you could give anyone advice who was newly diagnosed, what would it be?" I got some overwhelming responses. I'm going to type first names because I don't want to give away the privacy of the people giving the advice.


Speaking from person experience (I was diagnosed with GP in March 2012), the first two things really saved me:

1. I started a blog to keep track of my medical information but also to help others. When I was first diagnosed, I didn't know what gastroparesis was and there was barely anything online to explain it to me. I compiled my research to put into this blog and helped people that way. My blog today is used as a resource for United Healthcare, for when they get new GP patients.

2. I purchased a journal. While this may sound silly, I carry this thing around with me everywhere, and I do mean everywhere. I do daily entries to log what I eat, what time, when my gastric spasms start, when I get sick, how much I get sick, and how I feel. I also take pictures of my swollen belly after I eat and post those pictures in my journal. I print out and post motivational things in there too. There is also an app on your phone called "My Symptoms." It's $2.99 in the Google Play market but it will keep track of food, drinks, medications, and bowel movements. I use both because you can't be too safe. Also, the "My Symptom" application can be download into a spreadsheet to show your doctor. You can also give your written journal to your doctor. Maybe make a copy of it beforehand? It gives your doctor an idea of what you're going through. It will also help distinguish patterns.

3. Be your own advocate. Keeping the journal is well on your way to becoming an advocate for yourself. Do your own research and prepare questions in advance to ask your doctor. That way, you won't forget what you want to ask him and you can maximize the use of your time together.

4. Believe in yourself. This is hard sometimes. It's hard to keep going but just remember that you're a strong person, you've gotten this far. Things will be all right. Keep on believing in yourself and others believe in you, too.

5. This rule goes hand in hand with 3. Ask questions! If you can think of anything, write it down and bring it with you to the next doctor's visit. If it's an emergency, call your doctor after hours.

6. Research your condition and your doctors. Not all GI doctors are created equal. The newest one I just saw told me that gastroparesis does not cause pain. So, keep searching until someone believes you.

7. The GI Doctors at Mayo recommended cannabis, where ever it is legal. If you use cannabis, use it responsibly.

8. It's NOT *ALL* IN YOUR HEAD! I cannot stress that enough. I've been told that half of my life. The Spoon Theory helps with teaching those without a chronic illness what it's like to live with a chronic illness every day. It's rough but this is the most effective theory I can think of.

9. Stay strong by finding a support group. If you need help, you can read my blog or join any of my groups of Facebook. We are all here to support one another. If you look in your local paper, you can probably find public meetings for those with chronic illness. Just talking to people who understand where you're coming from is like a burden lifting from your shoulders.

10. Don't give up! We all have rough patches that knock us down but we get right back up keep fighting. We're strong, especially all united together. Lean on others for support when it becomes too much. That's why we're there.

11. Stay positive! I preach this nonstop because it is important to your health. If you get too stressed out, then your immune system is compromised. Try and stay positive and calm.

12. Be patient. While there is no cure for GP, we have good days and we have bad days. If you are having a "GP Attack" because be patient until it passes. Work on deep breathing (it's in my blog in another article). Also, try and stick to the GP diet. Stay away from things that are hard to digest like fiber, gluten, some raw fruits and veggies.

13. Stay hydrated! If you let yourself get dehydrated, that brings along a whole new set of problems. Dehydration can cause dizziness, headaches, and fatigue. If it's severe enough, you'll need to go to the hospital for IV fluids. Even if you're vomiting, try and such on some ice chips and sip on Pedialyte.

14. Take liquid vitamins or vitamelts. I am currently dealing with a vitamin deficiency, which is common for people who suffer from GP. My body is malnourished and quite starved since I can't hold down food, even if I wanted to. Dehydration just digs you into a whole that you can't escape from. You can try Flinstone's vitamins, or the melt away vitamins. Stay away from the gummy vitamins! They are hard to digest.

15. Lean on family and friends. I know some people have families who aren't very supportive and I'm sorry. They probably don't understand what you're going through but keep your chin up and help them to understand. My favorite is called The Spoon Theory and I've found it's the most effective when explaining a chronic illness to those who don't understand. Keep in mind that family doesn't always mean blood relation.

16. If you are religious, prayer can help. You can also seek out emotional support from a church congregation or a priest to help you get through the initial shock of, "Oh no! I have gastroparesis and now what I am going to do?" You have a community who cares about you and they want to help you. They just may not always know how to help. You will have to tell them how they can help.

17. Keep Yourself Happy. I cannot stress this enough. Being upset does nothing to help your stomach and the stress will more than likely make your stomach worse. I can attest to this from personal experience. HERE is a list from a previous article that gives lots of ideas on what you can do to keep happy and distracted.

18. Keep looking until you find the right GI doctor. I've been told GP doesn't hurt - but if nerve damage hurts in the rest of the body, why not the stomach? I had a doctor at Mayo tell me it was all anxiety because did didn't want to treat me; I was too complicated of a case. Don't forget that these doctors work for YOU. Keep searching for a doctor that's right for you. Find someone you can trust and who will listen to you. I've gone through about 10 GI doctors here in Atlanta and I'm still looking for the one who will listen to me.

19. Don't be in Denial. We all go through it. It's almost like a grieving process when you hear you have GP. I've eaten fast food because I was starving. But, I shouldn't have done that. A few times I did think the GP was in my head and then the vomiting and the gastric spasms (they feel like you have a charlie horse in your stomach when they start). Don't torture yourself and follow the GP diet. Eat low fiber,no raw fruits or veggies, and try and stay away from gluten.

20. Take advantage of the good days. Good days can be few and far between. So, take every minute of every day and enjou it!


Thank you to:
Kirsten
Melissa
Diane
Melony
Jennifer
Tracy
Judy
Julie
Lyndsay
Monica
Nikki
Jessica

Who contributed to the ideas in this article.

Advice for Caregivers Who Witness Loved Ones Suffering from Gastroparesis

I have given this a lot of thought over the past week. I know that when I'm at my worst and cry, it's hard for my husband to hold me and just feel so helpless because it's not something he can help with. I feel bad because I'm not sure how to put him at ease. So, I decided to write an article on ways to help our loved ones who watch us suffer from the side lines. They shouldn't feel guilty or helpless because they actually help us more than they realize, mainly by just being there to listen to us vent, or to hold us when we cry. My husband also takes me to doctor's visits, which really helps me because it's hard to drive while vomiting. Family and friends can play a huge role in helping patients deal with a chronic illness, and in this case, Gastroparesis suffers.



There is a video that one of my friends with Gastroparesis made of her husband discussing his experience in dealing with my friend's illness. It's a touching video and probably will help others understand what it is like to be the loved one of a person suffering from Gastroparesis. The video can be found here: http://youtu.be/qNLc5wyE4Fc


There is a group that I created that will help answer questions and give advice. However, always check with your doctor and pharmacist. I am a licensed pharmacy tech, so I do have a medical background of sorts and I've been published in geological journals for research. Additionally, United Healthcare uses my blog as an electronic resource for new Gastroparesis patients. One of my friends forwarded an email to me that surprised me that she got from United Healthcare listing my blog. So, that's my background. Here is the link to my group, Stronger Than GP (Gastroparesis Warriors): http://www.facebook.com/groups/strongerthanGP/





How To Help A Friend/Loved One With Gastroparesis:

Be honest - say, "I wish I knew what to say, but I care and I'm here for you."

Be there for them in any way they need you.

Do go to support group meetings with your friend, we do have a sister group for family and friends who have loved ones with Gastroparesis. Family and friends are always welcome, and that's the best place for you to ask questions and learn about Gastroparesis. Loved Ones with a Gastroparesis Warrior: http://www.facebook.com/groups/support4lovedones/

We also have another group, GP Warrior Parents & Parents of GP Warriors: http://www.facebook.com/groups/GastroparesisParents/ This group is for parents who have Gastroparesis and also for parents who have Gastroparesis Warriors.

I also have a page that I update with motivational pictures, educational articles, make jokes, and post to help those with Gastroparesis. My page is: Emily's Stomach: http://www.facebook.com/emilysstomach/

Keeping it light and making jokes is okay. We're not as fragile as we sometimes seem. It's all about the timing and the presentation. If you know the person well, do what you know they will find funny. Laughter is healthy. You can also join the group, Laughing Through Gastroparesis: http://www.facebook.com/groups/laughingthrugp/ for comedy and stress relief.

Let them know that they can always talk to you - even if it's just a vent session.

Always listen when your friend is frustrated - Gastroparesis is very frustrating.

Be there if your friend needs help, but encourage them when they want to do it themselves.

Remind your friend that he or she is in a very hard position - but that he or she is coping well.

Treat your friend as though they are a whole person - despite any limitations. Your friend wants to feel in control and capable, not as if they are wearing a big old banner for sickness. Even with Gastroparesis, we want to feel as normal as possible.

Learn about his/her Gastroparesis. Ask your friend for more information about how GP affects them. Just because you read about Gastroparesis online doesn't mean you know how it affects your friend. We all cope differently.

Let your friend know you are thinking of him/her. Send a card, an email, a text, a phone call.

Offer specific forms of help - "I'm going to the grocery store, do you need anything?" or "Can I do some laundry for you?" Any number of household things, your friend might need help with. Offer to take care of it. On a bad tummy day, we barely have the energy to get out of bed, so this is SO helpful.

Offer to cook within your friend's GP dietary limitations: www.pinterest.com/chikensrule Or we also have another group, Friendly Recipes for GP Warriors: http://www.facebook.com/groups/gpfriendlyrecipes/



Offer to help research the Gastroparesis, if your friend wants help.

Volunteer to watch their children. Take the kids out for ice cream or to a movie to give your friend some peace.

Offer to watch his/her kids during doctor appointments. It's often hard to find so many babysitters, and taking kids to an important appointment isn't always an option. Especially with all of the procedures and testing we endure at doctor's visits.

Chauffeur your friend around to places they may need help getting to like the doctor's office, the grocery store, and other errands.

Ask the person's partner how to best help the family. If there are a number of things to be done, organize a number of friends to help complete these chores.

Offer to take your friend to the doctor and take notes for them.

Do be an advocate for your friend.

Do encourage your friend to continue trying new things. When treatments don't work, those with Gastroparesis get discouraged. When doctors give up on them, they get frustrated. When they get tossed around from one specialist to another, they get anxious. But stay by their side and tell them you'll be there when they are ready to try something new. That tells your friend that they have a reason to keep trying. That means more to them than you realize.





How NOT To Help A Friend/Loved One With Gastroparesis:

Don't tell your friend how they "should" feel. Unless you have their illness, you don't know.

Don't presume you know what's wrong with your friend or what they're going through.

Don't compare your (xyz) to their (abc). That's like comparing apples to elephants.

Don't discuss worst-case-scenarios unless your friend brings it up first. And if they do, listen supportively - this is the hardest conversation imaginable for your friend.

Don't suggest drugs or treatments someone you know takes. Your friend is going through a treatment plan with his or her doctor - let the doctor take care of the medical advice for GP.

Don't criticize them for whining on a rough day. Gastroparesis is rough and good days are few and far between.

Don't offer the latest medical advice you heard about on Dr. Oz. In fact, don't give them medical advice at ALL, unless your friend has asked for you to help research the illness.

Don't downplay or belittle their illness in anyway. Your friend is fighting a battle - don't lose sight of that.

Don't assume your friend copes the same ways that you do. Let him/her cope in his own way. Don't tell your friend that they are coping the wrong way.

Don't bring up each "treatment" you've heard about Gastroparesis. He or she is constantly being bombarded with "treatments" and needs a break.

Gastroparesis isn't just a matter of attitude. Don't say things like, "when are you going to get out of bed?" or "I heard stress causes this illness." It's unfair and not true.

Be sensitive to limitations. Don't say things like, "Let's get some fresh air and take a walk." Your friend knows their limitations, which may change from day to day. Things they could do yesterday may not be the same as what they can do today. Don't question that. Gastroparesis can cripple your friend to the point that they can't leave the restroom.

Never insinuate that your friend is "faking it." People with chronic illness generally downplay the severity themselves, but to hear someone imply that the illness is "made-up" is a special breed of hurt.

Don't ever ask "How are you?" or "How are you feeling?" because the answer never changes and your friend doesn't want to talk about it. Instead ask, "How is your day going?" or "Is there anything you need help with today?"

Finally, if someone you love is suffering from a chronic illness, learn about the disease, help out with daily errands and chores, and give emotional support. Sometimes we all need a shoulder to cry on.


SOURCE HERE.




Toni Bernhard writes this in her article,

"Here are four tips to help you communicate more skillfully with loved ones when chronic illness becomes an inescapable part of your life.

Get help from a neutral third party. Often the best way to educate family and close friends about your diagnosis is to use a third party source because it takes the emotional component out of the equation. There are online organizations and associations devoted to every chronic illness or condition. Once you find them, you can forward links or print out pages for loved ones to read. If you have a book about your illness, photocopy the chapters that cover what you’d like your loved ones to know about your new life. (I did this for my close friends, attaching a short explanatory note to two chapters that I copied.)

Write a letter. If loved ones are not being supportive even after you’ve tried to educate them about your illness, write a letter to them. Describe what your day is like now, and express how you feel about this unexpected change in your life. A friend of mine wrote a letter like this to her mother when, despite their many conversations about her illness, her mother persisted in saying things like, “If you’d just get up off the couch and go out and exercise, you’ll be fine.” The letter transformed their relationship. Now her mother is one of her main sources of support.

Find non-illness related subjects to talk about. I had to learn how talk to others as a person with a chronic illness. At first, I assumed my family and close friends would want to know everything about my illness. After each doctor’s visit, I’d send them a long email describing the appointment in detail, medical jargon included. I’d get back a supportive sentence or two. It took several years for me to realize that my relationship with them would be more enjoyable and richer if I didn’t always talk about my illness. Now I ask about their lives and talk about new interests that I’ve developed. It provides all of us with a much needed respite from thinking about my illness all the time.

In the end, accept their limitations. Some family and close friends may never accept this change in your life. Try to recognize that this inability to accept you as you are now is about them, not you. Your medical condition may trigger their own fears about illness and mortality. You can’t always fix how others think of you or treat you, but you can protect yourself from allowing their lack of understanding to exacerbate your symptoms. The best way to protect yourself is to cultivate compassion for them. If you can learn to wish them well despite their inability to support you, you can free yourself from the mental suffering that arises from your desire for them to be different than they are. The physical suffering that accompanies chronic illness is difficult enough without adding mental suffering to it.

Everyone (including yourself as a caregiver) needs time to let Gastroparesis, which is a life-changing circumstance sink in. Hopefully, these tips will make the road to acceptance less stressful."

SOURCE HERE.

You’ve Been Diagnosed with Gastroparesis, Now What?

I wrote an entry about advice to those who have just been newly diagnosed with Gastroparesis but I wanted to make an entry of my top five things, I believe, you should do after being diagnosed. It contains a lot of good advice from a few members of a Gastroparesis group I was in as well. The links will be in all caps and in bold. Just click on them and they will take you to a different link.



1. You Have Named Your Illness - How to Help Family/Friends Understand

First, it's going to be hard for other people to adjust to the fact that you have an illness and it has a name. It's no longer invisible. People see you and it is NOT all in your head. However, having an invisible illness can be tricky because people often don't understand what they can't see. It can be difficult with all of the extra stress an invisible illness can put on you, so, I am going to recommend two of my blog entries that you should read and maybe read over with again with friends and family.

Please remember that people react differently to different situations. If people seem angry with you or tell you that it's all in your head, just give them some space. I had a friend who was very angry with me before I was diagnosed because I kept blowing off going to the movies, going out to eat, even going to the theatre! She was angry with me and called me flaky. She stopped calling me. After my illness and after reading my blog, I got a message from her on Facebook. She apologized to me! She said that she knew I was sick but not how sick. So, be patient. The important part is that you found out what's been making you sick and that's a very big step!

The first entry you can find by clicking HERE. is, "How to deal with People Who Say, 'But You Don't Look Sick.'" It's going to happen quite a lot, and you'll need to learn how to be patient with those people. This entry will help you and prep you for when that time comes. I know it's not easy to deal with, believe me, I've dealt with an awful lot, but it will help get you through the worst of it. I did not write this article, but I wanted to share it because it was helpful.

The second entry you can find by clicking HERE is, "How to Talk to Someone with a Chronic Illness; What You Should and Should Not Say." Keep this one to give to people as well. When people we care about are in pain, we want to offer words of encouragement, help ease their pain and motivate them to stay hopeful. Unfortunately, our words of cheer can often be misinterpreted by those who live with chronic illness. Rather than feeling supported, our words can evoke the feeling of "she doesn't understand my life at all." This can permanently affect our relationships. There are some tips in that entry to keep in mind when talking to a friend living with an invisible illness. I did not write this article, but I wanted to share it because it was helpful.

I'm going to add one more entry that will help you as well. It's called, "Advice for Caregivers and Loved Ones Who Witness Loved Ones Suffering with Gastroparesis." You can read it by clicking HERE.



2. Look Up Resources For Support

It's really hard to get the diagnosis from the doctor telling you that you are chronically ill. When I was diagnosed with Gastroparesis in March of last year, I had never heard the word "gastroparesis" before then. After I got home from the hospital, I went online to see what I found find out about my new illness and find a support network. When you're told so many times that you make up your illness or that you look great when you haven't eaten in a week and barely have enough energy to take a shower, it hurts. It hurts emotionally and physically. You can talk to a friend, partner, husband, wife, or neighbor. It does help to talk and get those feelings out.

I've found what really helps the most is to talk to people with the same illness that you have. You don't have to explain yourself when you break down and vent, or if you burst out into tears because of a song on the radio. You don't have to hold anything back when you tell them how sick you got after eating something you shouldn't have. They don't push, probe, or anything like that. Most of all, they DO NOT judge! I have compiled a list of great online support groups and resources, and I update the list when I find new groups. The list contains Facebook pages, websites, blogs, and mailing lists. It's important to have resources to not only research GP, but to find people like you to talk to. You can find the list by clicking HERE. This ties in with my next point, you need to be your own advocate.



3. Be Your Own Advocate

Research your illness. Sadly, doctors don't know everything. You should research your diagnosis. However, with all things on the Internet, make sure you're researching reliable sources. It's important for you to stay on top of all of the latest news about GP/DTP because most doctors aren't very familiar with GP or how to treat it. I usually go into the doctor armed with knowledge he doesn't have. Most people with GP, I've found, know more about GP than the doctor. I was asked today, actually, by the nurse at an urgent care clinic near my house what Gastroparesis was. I explained it to her and she looked a bit bewildered. But hey, I'll be happy to spread awareness any way I can. If you find a doctor you know, like, and trust, keep them!

Ask Questions about your illness! I can't stress this enough. After you do your own research, compose a list of questions that you have for the doctor and bring them in with you. If you write down what you need to ask, you won't forget. I've given my doctor a list of questions that I've written down before. He addressed them all. If you have any further questions after seeing him, write them down and call his office to leave them with the nurses. Your doctor will get to answer them when he has time.

Make sure the medications are helping you, not harming you. When I went to the Mayo Clinic, I was on about twelve different medications. The doctor stripped me off of almost all of them. Two of the medications actually did the same thing as well as could paralyze my stomach! The other medications had side effects that were just awful. You can find out more about Reglan by clicking HERE has irreversible neurological side effects! I was never told stuff like this! Be sure to check with your pharmacist and your doctor to make sure the medication you have is right for you.


4. The Gastroparesis Diet Plan

You want to make sure that you lower your risks of getting a GP attack. I wrote an article containing the diet plan from Mayo that I received from there, plus it links to Pinterest Boards with GP friendly recipes - like smoothies, juicing, and friendly food. Be careful though, everyone is different. What works for someone may not work for you. It's trial and error. It can be found by clicking HERE.

The diet is important because it will also help you determine what you can eat and what you can't eat. Again, no two GPers are the same. I can tolerate Yogurt on good days and most people with GP can't tolerate dairy. My advice is to keep a food journal. Log what you eat, what time you eat, and how much you ate. Also, record any GP attacks you have and the time they start and end. This will help you identify patterns and triggers in your diet. It's helpful and it cuts back on testing at the doctor's office.


5. Don't Give Up!

This is by far the MOST important point! You are NEVER alone so don't give up! Find someone to talk with, to help you through those rough times when you need it most. I have had some really rough days when I wondered what kind of life I was going to lead with this illness. What kind of life can you have if you vomit six to eight times a day? But, it IS a life. My life. I'm lucky to have it, so I plan on fighting for it. I'm excited to pass off a pair of boxing gloves to you so that you can fight along side me, fellow GP Warrior. <3 For more advice from our Gastroparesis Facebook Members on how to cope with being diagnosed with GP, please click HERE.

How to Deal with the Situation , "But You Don't Look Sick!"

If you have a chronic illness, you've probably been told this lots of times. I know that I have. Sometimes, it's from people who are really trying to be encouraging and polite because they aren't sure what to say. With others, it can be malicious. So, I posed a question to EMILY'S STOMACH The question was, "How do you handle these situations when people say these things to you?" I received a variety of responses. People like Paige have heard things like, "You'd be healthier if you ate more veggies...maybe you should eat some salads..." to "maybe you need some fiber." Fiber is the WORST thing for someone with Gastroparesis to eat because we have so many issues with digestion. Veggies also stay in our stomach and are harder to digest. They can lead to BEZOARS.

My response is to try and educate them about my illness. I try and make them understand what I'm going through. I've used THE SPOON THEORY quite a lot. However, if people aren't open to listening to you explain your illness, then they never will understand. You are better off ignoring them or avoiding them because with all of the stress your chronic illness brings, you don't need that extra worry.

HERE is an article that I think would help in reaching out to others. The article says,

A chronic illness is a long-term health condition that does not have a cure. Some examples of chronic illnesses are epilepsy, heart disease, diabetes, asthma, COPD, cancer, HIV, Alzheimer's and dementia, multiple sclerosis, Parkinson's disease, cystic fibrosis, Crohn's disease, Gastroparesis, and arthritis.

Living with chronic illness can make you feel very alone. Learn about staying connected with people to help cope with your illness.


Talk with People Who Have the Same Illness

Know that you have so much to share and learn from other people.

Learn that others may have the same feelings as you and that they know what you are going through.

Find a support group in your area for people who have the same chronic illness as you. Many organizations and hospitals run support groups. Ask your doctor or nurse how to find one. For example, if you have heart disease, the American Heart Association may offer or know of a support group in your area.

Find an online group. There are online blogs and discussion groups about many topics, and you may find support this way. [as a side note, HERE is the link to my blog article listing resources for Gastroparesis]



Tell Others about Your Chronic Illness

Know that they care about you and that their support will help you.

You may find it hard to tell others that you have a chronic illness. You may worry that they will not want to know about it or that they will judge you. You may feel embarrassed about your illness. These are normal feelings. Thinking about telling people can be harder than actually telling them.

Know that people will react in different ways. They may be:

Surprised.

Nervous. Some people might not know what to say, or they might worry they will say the wrong thing. Let them know that there is no right way to react and no perfect thing to say.

Helpful. They know someone else with the same illness so they are familiar with what is going on for you.



Know that you need everyone’s support.

You may look and feel fine most of the time. But at some point, you may feel ill or have less energy. You may not be able to work as hard, or you may need to take breaks for self-care. When this happens, you want people to know about your illness so they understand what is going on.

Tell people about your illness to keep you safe. If you have a medical emergency, you want people to know what is going on. For example:

If you have epilepsy your co-workers should know what to do if you have a seizure.
If you have diabetes, they should know what the symptoms of low blood sugar are and what to do.




Let People Help You

There may be people in your life who want to help you take care of yourself. Let your friends and loved ones know how they can help you. Sometimes you just might need someone to talk to.

You may not always want people’s help. You might not want their advice.

Tell them as much as you feel comfortable telling them about your illness and how you manage it. Ask them to respect your privacy if you don’t want to talk about it.

If you attend a support group, you may want to take friends, family members, or others along. This can help them learn more about your illness and how to support you.

If you are involved in an online discussion group, you might want to show family or friends some of the postings to help them learn more.

If you are alone and do not know where to find support:

Ask your doctor or nurse for ideas about where you can find support.

See if there is an agency where you can volunteer. Many health agencies rely on volunteers. For example, if you have cancer, you may be able to volunteer at the American Cancer Society.

Find out if there are talks or classes about your illness in your area. Some hospitals and clinics may offer these. This can be a good way to meet others with the same illness.




Get Help With Your Daily Tasks

You may need help with your self-care tasks, getting to appointments, shopping, or household chores. Keep a list of people who you can ask for help. Learn to be comfortable accepting help when it is offered. Many people are happy to help and are glad to be asked.

If you do not know someone who can help you, ask your doctor, nurse, or social worker about different services that may be available in your area. You may be able to get meals delivered to your home, help from a home health aide, or other services.

Here is some advice from others who have had to deal with this as well who are Gastroparesis Warriors:

1. Nola writes, "I had a discussion with my dad about this today. I told him it's easy for him to say that I need to get over it, because he hasn't been starving for six months and plagued by other health issues relentlessly for a year. He remarked that I still have a ways to go before I hit 100. I asked him how much he understands about my health, because I go into starvation mode and weight loss slows and sometimes reverses when it gets worse, and that if I was able to take my metabolic meds, I would weigh 20 pounds less. I told him I don't need him to commiserate with me, but he needs to acknowledge that I'm sick and doing all of this on my own, while he and my mother manage my brothers every medical appointment 2000 miles away (he's 32, I'm 35, so age isn't the issue)."

I had people believe that it was all in my head for years. I was told that CONSTANTLY! Since my diagnosis in March of 2012, I've had friends who have read my blog, who have read what I'm going through, come and apologize to me. I was told by one of my friends that she knew I was sick but not that sick! My family doubted me for a while and I have to say the self doubt also started creeping into my thoughts. But, I can't make up vomiting. I think after my husband saw me projectile vomit off of the top porch a few times, he started to understand.

2. Heather writes, "I try to ignore them. It's hard but I do try! I also tell them why I can't do things like they do."

I try to ignore the malicious people too. I have enough stress in my life without negative people. It does hurt, and sometimes it cuts me pretty deeply from people I thought I was friends with, but in the end, I don't need them in my life if that is how they are going to act. Constantly putting someone down is horrible, especially when you kick someone while they're already down.

3. Stephanie writes, "I refer them to The Spoon Theory... give them a chance to digest and then if they are close I'll initiate a follow up conversation, if they are not close I let sleeping dogs have their rest."

4. Nola writes again, "I had a friend who kept insisting she was going to 'get you back into he gym.' I asked her if I could get to eating more than a few ounces a day first. She then asked me to go kayaking. I told her I'm not consuming enough for a walk let alone an afternoon of kayaking. She hasn't asked about anything since. About two weeks and counting. I've started bluntly telling people, 'I have gastroparesis, it means my stomach is totally paralyzed.' Then I wait, wait, wait for it, the natural response, 'so how do you eat?' 'I don't.' Horror on their faces. At her sons birthday party two weeks ago, I said this to a woman I've known about 2.5 years. She said, 'I knew you'd been sick, but I thought like maybe a cold. You always seem like you are in such a good mood and have so much energy...how?' I smiled, 'I fake it.'"

I have to admit that I fake being all right A LOT! I do so to avoid unnecessary questions and try to keep from drawing attention to myself. I don't want people to fuss over me or worse, say things like I hide behind my illness or I'm always sick. I just smile, put on makeup so I don't look like death warmed over, and go about my day. The people who know me well can tell when I'm having a bad GP day, but to the rest of the world, I'm just Emily.

5. Rose writes, "It all depends on how I'm feeling that day, but there are times I can't go anywhere or talk to anyone because im easily triggered and it's like I'm just ready for someone to say something to me so my defense is up. It gets to me when someone says I could never do that, like I have a choice, they are putting themselves down anyway because I have no choice but to do it, I'm glad I have strong faith."

Stephanie writes, "I have actually said to people, you'd be very surprised what you can do when you aren't given the choice but to deal with it."

We have no choice in the matter. Trust me, if we could turn Gastroparesis off, we would in a heartbeat. It's not a healthy way to lose weight because your body starves and becomes malnourished. Additionally, pain is NOT a choice. The gastric spasms we have are very real and it hurts. I cry because mine get so bad that I actually pull stomach muscles during spasms and vomiting. The spasms lead to vomiting and the vomiting leads to more spasms. It's a vicious circle that we don't choose to have. This does lead to a positive point though, you never know how strong you are until it's the only choice you have left.

6. Melissa says, "I am at the point where I don't even give them a chance to say anything back, because I stay away from those who don't have any clue of what I'm going through, just like they think I am OK! Because I 'fake it' to I make it. It's best to distance yourself from those that are only hindering your health by contaminating your mental well being. I explain to others how I'm feeling and what is going on with this & that (pain & illness) an all they can says is, 'Oh! I was sick like that TOO!' Completely clueless."

I have lots of friends who don't understand what I'm going through. I don't think people can ever truly understand unless they've been there. I try to educate the best I can and for the constantly negative people, as I've mentioned before, I don't talk to them anymore. It's not something I can deal with right now because my patience isn't what it used to be because I'm too ill to deal with petty drama. But, I am determined to spread awareness about Gastroparesis to help educate those who don't know about it. I mean, I didn't know about it until I was diagnosed with it last year. But, I've never been negative to anyone I know with a chronic illness. There have been times when I didn't know what to say, and that's fine. But if you can't say something nice, don't say anything at all.

7. Julie writes, "I have been accused of just wanting attention."

I've been accused that as well and I ignore it. Those people are delusional. Who wants to pretend they are that sick? Because we enjoy staying home and not having a social life? Because we don't suffer enough. This is one thing that really does bother me.

I just want to tell all of you out there who deal with this on a regular basis - stay strong. You have a GP family who loves you and understands what you are going through. You have so much to live for, don't give up.

I want to give a special shout out to Lyndsay, whom I am talking with tonight. She needs love and light, so please keep her in your thoughts. I want her to know that she is loved and there is hope.

When Telling Someone They Look Great Becomes an Insult!

When Telling Someone They Look Great Becomes an Insult!
By: Scarlett Hill

Link to Article: http://voices.yahoo.com/when-telling-someone-they-look-great-becomes-insult-11971343.html

"If I asked you what Diabetes looks like, could you tell me? How about heart disease or Epilepsy? If I showed you a picture of four individuals, three of them diagnosed which one of the illnesses listed and one person who has no medical issues, do you think you would be able to tell me which one was not ill? I think not! Diseases do not all have a 'look' to them. Do not be fooled. Just because you cannot see it does not mean it is not very real and in some cases debilitating, serious and possibly life threatening. There are too many invisible illnesses to list, however each holds true to the fact that you cannot look at a person and know they have it or how they suffer.

Many people with invisible illnesses suffer in silence and there are multiple reasons for this. Millions of people who suffer from these conditions take on the added stress from friends, co-workers and even family members implying that because they don't have the appearance of being sick they must be exaggerating their condition. This actually has the potential of creating more health problems for the individual such as depression, alienation and complications caused by stress. When a person is ill, in pain or trying to cope with the acceptance of an illness the first people they turn to are their family and friends but sometimes the outcome is not a positive one when they cannot see the struggle. At this point there becomes an overwhelming sense of feeling alone and it becomes extremely difficult to deal with such debilitating symptoms. At this point you should seek out local support groups or online groups to connect with others who understand your struggle.


'But you don't look sick'

When family and friends don't know what to say, they often say the wrong thing! They think they are paying a compliment by saying things like 'but you don't look sick' or 'you look great you must be feeling better.' However, when these things are said to someone who lives their life in total agony, defeated emotionally by pain, in reality they are verbally stabbing the person right in the gut. While these words seem harmless, they can cut like a sword to someone living with an invisible illness. If you have a loved one who you may have said these types of comments to, you may want to re-evaluate what they are experiencing and how you may better approach it next time. Seek out care taker support groups or online forums run by individuals who have the same type of illness and research it. Ask questions and get an understanding of their quality of life. This may help you to better grasp what your loved one is feeling and open up the lines of communication between you.



Invisible, But Destructive: Gastroparesis

Think about the last time you had the flu. Really think about the details. How did it make you feel? Really visualize it, relive it mentally for a moment. I am sure there are images of stomach pain, vomiting, diarrhea; body aches and a few words along the lines of "oh please, make it stop" coming to mind right now. As your head hung over the side of the porcelain princess (aka the toilet) I would be willing to bet that you were counting down the minutes of this traumatic event, praying that it would promptly end and that you could go back to life as you knew it 24 hours prior; healthy, happy, pain and vomit free with the ability and desire to eat and drink at free will!

Now I want you to imagine life living with that flu permanently. Every day of your life bringing those symptoms you fear. Not knowing if today you will vomit upon waking, be able to hold down liquids, be able to eat, drive, grocery shop or if today will land you in the hospital. You may not be aware but this is the harsh reality for about 5% of the population. It is caused from a condition called Gastroparesis (GP). Gastroparesis means "paralyzed stomach" and is an extremely painful, awful, debilitating, misunderstood condition. It is very real. It is also very invisible. You cannot simply look at someone know they have it. There is no cure. Doctors are limited in their knowledge about it. There are only a few treatment options and they do not provide much relief at this point. There are no medications. There is no escape from the symptoms and in some cases there is no escaping the possibility of death. Many things in life are a choice. Eating is not one of them. When an invisible illness effects a person's eating habits, it affects their entire life.

Now imagine if you had this invisible illness and after a night of stabbing, gut wrenching pain, vomiting for hours, unable to eat yet you are starving and having the desperate wish for a cure and someone looked at you and said 'but you don't look sick.' It is great you don't look the way you feel, but that is such an insulting comment when all you desire is for someone, anyone to understand and be supportive. We need to raise awareness in all of our communities about the different invisible illnesses and become a greater support system for our loved ones. If you or your loved one suffers from one of the other many invisible illnesses, you may visit the Invisible Disability Association for information, encouragement, awareness and more."

At this point in time, Gastroparesis remains to be one of the most severe, debilitating and in some cases life threatening motility disorder. There is no reliable research, safe medications or adequate treatment options. Please visit www.g-pact.org to learn more.

If you are a caretaker of someone with Gastroparesis you can join this group that will help you.

Loved Ones with a Gastroparesis Warrior: http://www.facebook.com/groups/support4lovedones/. This is a safe place where you can ask questions, vent and become educated on the condition.

You can also join our other group that will help you with questions as well as advice and support. Stronger than Gastroparesis (GP Warriors): http://www.facebook.com/groups/strongerthanGP/

Information about Gastroparesis (GP)

GPACT - has wonderful information regarding diets, treatments, and awareness.

Medtronic - Home page of Medtronic. "Medtronic is the world's leading medical technology company, providing lifelong solutions for people with chronic disease". Medtronic is the manufacturer of the gastric pacemaker for GP now being implanted in medical centers nationwide.

Gastroparesis Group on Yahoo - Online support group for people of all ages, severities, and causes of gastroparesis. Friends and Family are welcome as well. Group managed by five, most of whom have GP personally. Founded Dec. 12, 2000 and has almost 3,000 members from all over the world.

Pediatric Gastric Support - Online support group for parents of kids with gastroparesis.

GPACT for Teens - Online support group for teens with GP to interact with others their age and share stories. This group is run by two teens.

Government Info - Gastroparesis and Diabetes. Excellent site with good information even if you are not diabetic.

Oley - The Oley Foundation which provides information and resources on nutritional support needs

Medicine Net - This is a very extensive site for most medical conditions. In order to access info on gastroparesis choose diseases and conditions from the home page, then choose the letter G and scroll down until you find gastroparesis. The site is very extensive and clear.

Health Central Site - Health Central site with good info on gastroparesis