Find us on Google+ Gastroparesis: December 2012

Wednesday, December 26, 2012

The Holiday Aftermath

My husband and I went to Augusta this weekend to visit family. I ended up having a bad GP flare up and slept most of it off, so I didn't get to visit with people like I wanted to - which made me feel like a horrible friend. But, I didn't get sick in the car! That was a good thing. I brought my bucket with me just in case but we also brought my cats and they wanted my bucket.

I got to see my niece open up all of her presents. She kept saying, "Wow" after each present. She really liked the small fake smart phone I got her that had a picture of an owl talking to her telling her which buttons to press. I got her a dog on a string to pull around. She couldn't quite understand the concept, so she picked up the entire thing and carried it around!

I got to spend some time with my mom, my youngest sister, and my niece. Then, I went over and stayed/spent time with my mother-in-law and my sister-in-law. It was just nice to spend some time with everyone. My phone died, and guess who didn't remember to bring her phone charger? Guess who had a charger in the car that only charged while the car was on? *facepalm*

We came back to our house on Christmas Eve and had Christmas with one of my best friends and one of my fraternity brothers. I think they loved the presents we picked out for them. I got a copy of River Song's journal, which makes me very happy. I'm going to keep my GP musings in there when I'm not close to my laptop.

Christmas Day was great. We went to one of my best friend's house for Christmas dinner. I got to see two of my good friends who have since moved to different states, so it was great to see them. I ate a tiny bit of turkey, dressing, a bit of mashed potatoes, and two slices of homemade apple pie (one of my weaknesses but it was delicious). I knew I shouldn't have eaten it but it's hard for me to give up apple pie. Well, I'm paying for eating what I wanted to last night.

On a side note, my brother and his girlfriend came over and spent some time with us and we exchanged gifts. Now, we have two roomies left to exchange gifts with and that will be the end of Christmas at this house.

I spent all night pretty much vomiting up everything I ate. My stomach is spasming and contracting and it feels awful. Have you ever been so hungry that you've gotten cramps? Now, imagine those cramps plus someone sucker punching you in the gut and/or someone hitting a line drive into your stomach. I took a pain pill the doctor gave me (which I try to use sparingly because it causes gastric delays) and it's not even BEGINNING to touch the pain. It's my own fault but it was worth it. My friends made wonderful food and I was able to spend some time with them. I had to leave early so that I wouldn't get sick in front of them. Because when I start vomiting, it's hard to stop until all of the food/liquid is gone.

Well, I am going to go take more phenergan and bentyl. Hopefully, that will cut back the spasming and cramps. My throat is swollen from vomiting. It's like strep throat, I can barely swallow anything. It might be best if I could just go back to sleep.

Wednesday, December 19, 2012

Update from this Weekend to Today

I woke up this morning with horrible stomach pains. I started crying. Then, the vomiting started, which I'm glad I had a bucket beside the bed. I just feel miserable but let me catch you up on my weekend.

This past weekend, I had a Leadership Retreat with my fraternity. It's a tradition to have one of these, in the woods off of the grid, to bond together. I was quite proud of myself for surviving the car trip without vomiting in front of my friends, although I loaded up on all on of my medication (which means I couldn't drive). I got to the cabin and picked a bunk close to the restroom. I made sure to bunk with my brothers who wouldn't mind vomiting. I brought a bag of baby food for eating.

While talking to one of my little brothers, I vomited in my mouth. But, I was able to swallow it down, because I was no where near my bucket or the restroom. My little looked at me, knowing what I was doing, and fist bumped me for not getting sick on the floor. She knows how bad I feel but my brothers feel bad that they can't help me. I was amused by the fist bump though. That's not the first time that I've swallowed vomit down. I did that in the car yesterday too. My throat is sore and burnt from all of the vomiting.

Anyway, I actually got sleep on the trip. I don't know if it was because I was in the woods away from electronic devices or what, but I actually got some sleep. Usually, I'm a light sleeper but I didn't hear anything. When I woke up, I felt bad, because apparently, I was snoring. That ran some of my brothers out of the room. I apologized but they were just so happy that I finally was able to sleep that they didn't care. I have really nice brothers.

I ate some lentils during the retreat because I thought they might stay down. I think I ended up vomiting four to six times during the retreat. I wanted to take a shower, because that always makes me feel somewhat better, but it was too cold for me to stand in the shower. The ride back wasn't too bad, I didn't get sick because I loaded up on phenergan and my other medications.

I talked to my doctor's nurse yesterday because I was tired of not being able to sleep. My stomach keeps me up by vomiting all night. The doctor called me in some Ambien to help me sleep and told me he was following up with the Mayo Clinic because they should have scheduled me by now. He's sending me to the Mayo Clinic in Jacksonville, FL.

Honestly, I just want some kind of relief without vomiting. I don't like carrying a bucket around or embarrassing myself in front of my friends, even though they understand. I can't even do anything simple like going to someone's house to hang out because I spend most of the time in the restroom. This is just no way to live. I'm eating baby food but that's hit or miss with my stomach too.

So, I'm waiting patiently to hear back about the Mayo Clinic. If I don't hear back today, I'm going to call both my doctor and the Mayo Clinic tomorrow. I need some sort of relief. Until then, I'm going to take my medication and hope that one day, food will be in pill form.


Something did make me laugh yesterday. Every time I hear about the Mayo Clinic, I think about the scene from Airplane:


Tuesday, December 11, 2012

Gastroparesis Resources & Online Support Groups

If you're like me, then you have a lot of questions about Gastroparesis. I wanted to put some resources on here for people who may need support groups for understanding, venting, emotional outlets, and to be here for each other. I recommend all of the groups down below.


If you know of more sources, please leave a comment with links.

I would love to spread them around to the fighters of GP that I've gotten close to recently.

There are several communities on Facebook that are full of helpful people and support. I have to say that I've been on the Gastroparesis yahoo group's mailing list for a while but I hardly use it. I mostly use Facebook for questions and support. If anyone uses any of the Yahoo groups, please let me know how they are and what you think.

No awareness, no funding, no research. Spread the word!





Facebook Pages:


GASTROPARESIS - EMILY'S STOMACH. This is my personal page for Gastroparesis Awareness and motivational photos. Occasionally, we do receive questions, which we call upon the community to answer. www.twitter.com/emilysstomach on Twitter. No awareness, no research, no cure.

GASTROPARESIS: MY LIFE WITHOUT A STOMACH. My friend Denise started this page because she wanted a page for those who do not have stomachs anymore, due to surgeries, to come together and find support. Additionally, she created it for the people who are considering the surgery so that they can ask questions and make informed decisions.

ONE MILLION LIKES FOR GASTROPARESIS, AWARENESS, RESEARCH, AND A CURE. This group wants to give Gastroparesis a name, a face, and a loud voice! This disease needs to be well known, well heard, and well understood. There is no cure for Gastroparesis and with out raising awareness and funding, there never will be.

TATS FOR GASTROPARESIS. My friend Melissa runs this site and it takes a look at tattoos people have gotten to show they support Gastroparesis Awareness.

GP FIGHT - GASTROPARESIS. This page is run by my friend Melissa and highlights the struggle of fighting through gastroparesis.

THE GP FIGHT STORE. This is a page set up for the Gastroparesis Fight Store. It has lots of merchandise and the proceeds go to the fight against gastroparesis, because we need a cure.

GASTROPARESIS AWARENESS. This is my personal page. I've often believed that motivation, inspiration, and laughter will help with the chronic illness that we know today as Gastroparesis. My page is designed to promote awareness and understanding as well as offering encouragement and refuge to those who suffer from GP.

FIGHTING GASTROPARESIS WITH HEALTH AND HAPPINESS (G)oodbye (P)udge! The purpose of this group is to provide POSITIVE and ENCOURAGING motivation to fellow GPer's who struggle with weight loss or just want to maintain their weight through a clean and healthy lifestyle.

GASTROPARESIS AND ME. This is a soon to be nonprofit that helps spread awareness of Gastroparesis, work on legislation, and shares updated medical and research news!

CHILDREN LIVING WITH GASTROPARESIS. This is an awareness page where selected parents/caregivers will blog about their child's journey living with Gastroparesis.

JOURNEY WITH GASTROPARESIS. Practicing a positive approach to feeling "full" through mindful insight, shared experiences and tips on living your best with GP. For more information about creating a brighter journey visit www.journeywithgp.com

JENNIFER'S GP HOUSE, LOUISVILLE KY (SUPPORT GROUP). Jennifer’s GP House, will help patients(families) that travel into Louisville, Kentucky from all over the world to be treated for GP (Gastroparesis) issues. We would like to shuttle them to and from their appointments and make sure that they have room and board free of charge, while staying in Louisville. Jennifer’s GP House, also will raise awareness i.e. community education for this condition in Kentucky.

PAGES OF POSITIVITY. Pages of Positivity is a project created in order to help people suffering from illness stay positive. They are in the process of becoming non-profit organization. For more information about their journals and staying positive, please visit: http://www.pagesofpositivity.com.

ONE MILLION LIKES FOR GASTROPARESIS AWARENESS, RESEARCH, AND CURES. This page was created to spread awareness about GP and educate others on what GP is and the lack of treatments available for it with today's modern medicine. There are five million people who suffer in silence with this debilitating illness, and we are advocates on their behalf.

LAUGHTER THROUGH GP. Laughter is the best medicine, so I will be serving up humor in additional to motivational pictures in order to help Gastroparesis members and caregivers a reason to laugh. I am the page creator and I'm also looking for admins. Just shoot me a message via Facebook if you would like to help out.

ADVENTURES WITH GASTROPARESIS. They say in their page about us section, "When Gastroparesis throws you lemons, make lemonade!" I haven't really read this page yet but it was suggested to me by another GP member. But, the more resources we have, the better we'll be! We're all on the same team against GP. And that alone, makes me extremely happy. You can also visit www.adventureswithgastroparesis.com.

GOT GUTS. Jaqueline and her friend started this page. She writes, "It is a lot of medical humor/disease awareness. With my recent diagnoses of Gp, maybe my friend and i could start up some gp memes."

MELISSA'S GP FIGHT MCELFRESH. She writes, "This is my page dedicated to helping my GP friends with support and information. As I always say, "We are in this together". I was dx with GP not too long ago, but am here to help you the best I can. It is scary and we want you to know that you are not alone!"





Facebook Groups:

STRONGER THAN GASTROPARESIS. This is a group that I started that is a bit smaller than other gastroparesis groups, so it's a bit more intimate. It is for those who need support for gastroparesis and need a place to vent, ask questions, post motivational/inspirational images, and to just have a place to feel safe posting.

GASTROPARESIS MOVIE, TV, AND BOOK GROUP.
It's like a book club, but with movies and TV shows too! We will pick one a week and then discuss it.
Since most of us can't go out to the movies and stuff like that, I thought it would be a fun way to get together to discuss movies, TV shows, and books. I'm toying with the idea of having events like on the xbox or skype or something where we can all watch the movies and comment on them together. Each week, it will be something new, so it might broaden your horizons on films and TV shows you would never consider watching otherwise, as well as books you might not consider reading on your own.

GASTROPARESIS SUPPORT FOR SURVIVORS OF ABUSE AND BULLYING. This group is a support group for GPers who have been abused/bullied in some way, by a relative, spouse, friends, etc. This is a safe place where people can share their stories, vent, and receive support from one another so that they can move past horrible things that have happened to them.

EMILY'S STOMACH. This is closed group that was created as an extension of the public Emily's Stomach Page, where people can post their questions, discussions, frustrations, pictures, and anything to help them with their diagnosis of GP. Chronically ill patients are welcome who have an invisible illness to join as well. We want our members to be able to interact with each other without fear of repercussions from their family and friends. All posts are confidential.


L.G.B.T.Q.I.A. GASTROPARESIS WARRIORS. "The emerging rubric is “L.G.B.T.Q.I.A.,” which stands for different things, depending on whom you ask. “Q” can mean “questioning” or “queer,” an umbrella term itself, formerly derogatory before it was appropriated by gay activists in the 1990s. “I” is for “intersex,” someone whose anatomy is not exclusively male or female. And “A” stands for “ally” (a friend of the cause) or “asexual,” characterized by the absence of sexual attraction." This is for those who need a safe haven, who have questions, and would like to remain anonymous. There are no judgements here.


GASTROPARESIS SUPPORT THROUGH CRAFTING.
This is a new group for those who like arts and crafts. It was created for GP patients to share ideas, tips, and learn new things – all while being distracted from GP. A lot of our fellow warriors are very creative. If you want to learn something new or help teach someone something new, please join.

GASTROPARESIS ALLIANCE.
This is a new group designed to promote unity among the gastroparesis community. Instead of competing for likes or group members, we are joining forces with each other to make sure we support one another. We can do that by highlighting groups/pages/blogs and make sure we promote each other.

PREGNANCY AND GP. This group was made for those with GP who are considering getting pregnant or who are pregnant with gastroparesis. You can ask questions with those who understand what you are going through. The people in this group are wonderful and willing to help.

GASTROPARESIS PARENTS WHO HAVE GP AND CHILDREN WITH GP. This group was made for those who have children diagnosed with gastroparesis. It is a group for parents to ask advice of other parents or just vent to those who understand what it is like taking care of a pediatric GPer. Additionally, it's a place where parents with GP can come together to talk with other parents about their challenges with GP for advice and guidance.

TEENAGE GASTROPARESIS SUPPORT GROUP. This is a new group for teenagers with Gastroparesis. This group is to help them contact other teens, get advice, and to help them through their teenage years with GP.

LOVED ONES WITH A GASTROPARESIS WARRIOR. This group is for family members and friends who may need additional support from one another because they have loved ones who are GP Warriors. This is a safe and understanding environment for loved ones to vent and to ask advice from others who are going through the same experience.

GRIEF GROUP FOR GP WARRIORS.
This group was made so that those who have lost GPers in their lives can come to a safe space and remember those who they have lost in addition to talking with others who have also lost someone they have loved. This is a group made to help cope with our losses as we continue this fight against this invisible illness.

GASTROPARESIS FUNDRAISERS. This group was made to be a safe space for GPers to post their gofundme pages, their stores, or any kind of fundraising event related to gastroparesis. It is a one stop shopping group in order to promote gastroparesis research. A group with posts about different fundraisers is easier to track and follow as well as promote to others.


LAUGHING THROUGH GASTROPARESIS. This group is for posting funny pictures, jokes, stories, and videos. It's to keep the chronically ill cheerful, which is important for their health.

GASTROPARESIS WARRIORS. This is my personal group. I wanted to create a closed group where we can share motivational pictures, ask questions, give people inspiration, and to help as many who are diagnosed with #gastroparesis as we can. I know that a lot of people are scared to ask questions on a public page - but I wanted this to be a safe place where no one will judge. Also, I love helping people and I want this group to be a safe space for those who need to seek refuge from their friends and family who may not understand what dealing with gastroparesis is like on a daily basis. Please spread the word about the group on your pages and groups - because we are truly Gastroparesis Warriors.

GP WARRIORS WHO ARE WRITERS & BLOGGERS WORKING TOGETHER. This is a group specifically to share each other's blogs and discuss questions, answers, and taboo topics. We can also help peer review other blogs and give tips on blogging. Please add anyone you know who owns a blog and have them post their link here. A dedicated group with blog links will be easier to follow for most people.

GASTROPARESIS AND DIABETES SUPPORT GROUP. This is a group for those of us who have diabetes and also suffer from GP.

SEX AND GASTROPARESIS. This is a group created to discuss sex and gastroparesis. Questions are welcomed about sex so that the other groups members can answer based on their experiences. This is a sensitive subject, so it's a private group. We want you to feel as comfortable as possible if you have a question.

HELPING OTHERS FIND A GOOD DOCTOR FOR GASTROPARESIS & OTHER ISSUES. This group is run by a great friend of mine. It has reviews on doctors and lists of doctors in each state that have been given great reports by other GPers. If you are having trouble finding a doctor that will listen to you, this is the group for you.

FRIENDLY RECIPES FOR GP WARRIORS. This group was made to swap recipes that are GP friendly. A lot of us are different, and no two GPers are the same, but this group will give you an idea on how to prepare GP friendly food if you get tired of eating the same thing over and over again.

GASTROPARESIS RECIPES. This is another group dedicated to share GP friendly recipes with others. You can share your own and swap recipes here.

G-PACT. This group was made by GPACT to answer and questions that you might have concerning gastroparesis as well as to keep you informed of what GPACT is currently working on.

MOTHER'S OF ANGELS OF GP. This is a support group for those who have lost children to gastroparesis. It offers support and help to those who are grieving and gives them a safe and supportive environment in order to deal with their loss and grief.

GASTROPARESIS - A POSITIVE FIGHT. "This group is a support group for people or friends and family members of people that are suffering with gastroparesis. I want to make this a positive place to be apart of. Having this horrible disease or supporting someone that has it is already such a negative experience so trying to find the positives I truly believe will make us feel better in the long run."

LIFE WITH A GASTRIC STIMULATOR. "I am forming this group in an effort to share stories and progress for people with a gastric stimulator. There isn't a lot of information out there on what to expect after you have one placed. If you have questions often only the doctor can answer because searching online leads to a dead end."

GASTROPARESIS GOOGLY EYE MOVEMENT. This is a group to support the Googly Eye Movement in the Gastroparesis community. It's a fun gag, just to blow off some steam and it's all in harmless fun.

GASTROPARESIS WARRIORS AND STOMACH REMOVALS. This group is for those who have had their stomachs partially/completely removed as well as the Gastric Sleeve, Nissen Fundoplication, Gastric Bypass, and Gastrectomies are all invited to join for questions and support, for those who suffer from Gastroparesis/DTP.

DARK SIDE OF THE SPOON. Are you chronically ill/ Spoonie and enjoy adult themed humor, art, games, discussions and photo shares? This group is a safe place. All lifestyles are welcome.

WOMEN WARRIORS WITH GP (GASTROPARESIS). This group is a sister group of Stronger than Gastroparesis (GP Warriors). It is designed for meant for Women with Gastroparesis to discuss issues that stem being a female GP Warrior.

GASTROPARESIS AND MENTAL ILLNESS. This is a group for those who suffer from Gastroparesis and Mental Illness. A place to discuss how one effects the other. A place to vent and be supportive.

G-PACT SEND A SMILE. According to their group, “The Send a Smile program is designed to encourage our GP friends who are members of G-PACT. This program works by sending encouraging cards or letters for the recipients to Dotty Fanelli and she will send the whole lot of cards to the recipient in a big envelope. Recipients are nominated. They can be self-nominated, nominated by another G-PACT member or are nominated by the admins of G-PACT. Each recipient will be nominated once. Sometimes it takes a while for all of the cards to reach Dotty Fanelli, so she will often end up sending a couple envelopes to the recipient. Once a recipient has been nominated, he or she will be recorded by Dotty Fanelli in a book that holds all of the recipient’s information, the days they were announced in the Send a Smile group and any pertinent information. Recipients cannot be nominated several times. The members of G-PACT are all suffering in so many ways. The goal of this program is to reach out to as many people as possible who are in need of encouragement.”

TUBIES WITH GASTROPARESIS.
This group was designed to help tubes deal with issues regarding tubes, to answer questions, and to help those who just started using tubes. This group contains a lot of great resources and amazing people to help you if you have any tubie related questions.

HEALING GASTROPARESIS NATURALLY. This group was created to give natural solutions to Gastroparesis problems. The people in the group are really wonderful and understanding and will be glad to help you should you have any questions.

GASTROPARESIS POETRY CORNER./ This is a group for people who have gastroparesis to come together and share poetry they have written with each other. I believe you can also critique and help others with their poetry as well. It is a great outlet for those who might be looking for a distraction from gastroparesis, or for those whose poetry helps them deal with having gastroparesis, or other chronic illnesses.

GLOBAL GASTROPARESIS SUPPORT GROUP (GGG). This is a group for all GPers who are looking for patience and understanding with their illness. The group is run by a friend of mine and has helped so many already. She will do right by you and make sure that your questions get answered and give you the support you need.

LIFE OF THE LADYBUG. This is a group for creative writing and for inspiration, positivity. "Just a girl trying to blog. This is about my life’s journeys and what they bring; happy, sad, positive, sometimes anger but always honest and true.... hoping everyone enjoys and always feel free to comment what makes it all worth doing is input
Always remember to breathe!"

HUMOROUS, CUTENESS, AND SWEETNESS THERAPY. "I created this group cuz[sic] we all go through tough times in life and sometimes just seeing something as simple as a cute or sweet picture will bring a much needed smile to your face! It's like therapy! Which is exactly why I created this group!!!! Please help me make a difference in this world by bringing a smile to people's faces and making them laugh daily!"

FINDING HOPE, FAITH, AND LOVE IN RELATIONSHIPS WITH A CHRONIC ILLNESS. "Welcome to my online Facebook support group that I created! If you are seeking and looking for hope, faith, and love in any kind of relationships with a chronic illness, then this group is for you! This online support system will consist of people with ALL types of chronic illnesses who need advice, encouragement, tips, or have questions/concerns when it comes to any kind of relationships, including looking for or being in a relationship, whether you are the one dealing with health issues or you are interested in/dating/engaged/married to someone who has health issues! This group will also be open to support and uplift those who have experienced a break-up or are divorced/in process of a divorce or even widowed due to a chronic health issue as well! This group will NOT be a dating or matchmaking site AND it will be a 'closed' group for privacy reasons! This page will also be a voice for those struggling with health issues when it comes to finding hope, faith, and love in any type of relationship...not just *love relationships*, BUT even relationships with *loved ones*! We hope our stories inspire and encourage others that regardless of whatever health issues that come our way, you can STILL find hope, faith, and love in your relationships with others, including a mother/daughter relationship or even a father/daughter relationship as well too! Absolutely NO drama, bullying, lying, rudeness, or negativity towards other members/admins will be allowed in this group! Open to both men and women worldwide, 18 years old and up (due to adult content) and you will have the chance to send me a private message if you would like to make an anonymous post with any concerns or questions you may be too embarrassed to ask others about when it comes to relationships of any kind! We are NOT professionals or experts in this topic and everything posted will be honest and from real life experiences as I myself live with several chronic health issues! Please share your story with us! And please know that there is HOPE when it comes to ANY relationships dealing with a chronic illness! Just have hope and faith as you open your heart to the world of ***LOVE***!!!!"

GASTROPARESIS PEOPLE HELPING EACH OTHER. The group description says, "We are here for each other. Whether it is to gain knowledge and information, venting, sharing stories, our GP "family" will be here for you. We are a very close knit bunch and there is a lot of love here. This group started as a dream and became a reality. No fundraising requests within the group, as it is meant for emotional support and educational resources only."

GASTROPARESIS & BARIATRIC SURGERY. This is a gastroparesis support group but with an emphasis on gastroparesis being caused by bariatric surgery.




Twitter:

LAUGHTER THRU GP. This twitter name @laughterthrugp will summarize the Gastroparesis Facebook pages that I admin, so that you can stay up to date with what is being posted.

GASTROPARESIS - EMILY'S STOMACH Twitter @emilysstomach will help you keep up to date with the Facebook page information. You can also email them at emilysstomach@gmail.com.

GASTROPARESIS AND ME. This twitter name @GPandMEglobal will help you keep up to date with the Facebook Page. Tanya is the President of the group and is in the process of making her own nonprofit. I just became the new admin for this account and Facebook.



Google Plus:

GASTROPARESIS AWARENESS. This is a brand new community on G+. It's a sister to the Facebook group, Gastroparesis. I am one of the moderators but I only have four people who have joined so far. Please join the group so that we can spread the word about Gastroparesis. No awareness, no research, no cure.


Tumblr:

EMILY'S STOMACH. This is a Tumblr dedicated to random gastroparesis information and inspiring photos found on the internet in my spare time. It will also share some of my struggles, too.

GASTROPARESIS SUCKS. This is a Tumblr by Brianna dedicated to showing how much GP hurts.


Pinterest:

GASTROPARESIS AWARENESS THROUGH PICTURES. The goal is to spread the word about Gastroparesis so that we can get funding for research. Gastroparesis is a debilitating stomach disease that literally means paralysis of the stomach. One of every 62 people in the united states alone (about 5 Million Americans) have been diagnosed with Gastroparesis.

GASTROPARESIS. This Pinterest Board was made by Jeanne. It has information on Gastroparesis.


MY GP FIGHT. This is a Pinterest Board that is owned by Melissa. There is a lot of information and amazing art work that she has put together into a board.


Yahoo Groups:

GASTROPARESIS. This is a mailing list for those of us who suffer from GP and need support from those who understand chronic pain and illness. This group has the most members on Yahoo Groups featuring Gastroparesis.

PEDIATRIC GASTROPARESIS SUPPORT GROUP. This, again, is for the children and parents who deal with GP.

GASTROPARESIS PROBLEMS. This is another mailing list about problems with GP.

GASTROPARESIS SUPPORT. This is a mailing list for those of us who suffer from GP and need support from those who understand chronic pain and illness.

YOUNG PEOPLE WITH GASTROPARESIS. This group is for younger fighters who may have questions regarding GP.

GASTROPARESIS PATIENT'S GROUP. A group for patients of GP who get together and discuss the disease.



Blogs:

JOURNEY WITH GASTROPARESIS. This blog was designed to practice a positive approach to feeling "full" through mindful insight, shared experiences and tips on living your best with GP.

GASTROPARESIS AND ME. This is for all of those who are inflicted with, or know someone surviving with Gastroparesis. The word "ME" means "EVERYONE". If you are living with something that is torturing you, but no one seems to know what is going on, it makes you feel like, "Is this just me?". That is why it is important we all work together, in the US and abroad, to help each other live and find a cure. Help work on this site, hold an Event, and other collaborative efforts of support.

MELISSA'S GP FIGHT. This is a blog by one of my GP friends. She is an amazing writer and GP advocate. She also has a Facebook page that is linked above. She writes, "In 2012 dx with GP. Here to do what I can to spread hope, awareness and current GP treatments. Let's see how far we can spread GP Education to ensure a better quality of life (cure would be better) for us all. And don't forget the impact on our loved one's and caregivers, they need support too!"

LIFE WITH DIABETIC GASTROPARESIS. Gastroparesis occurs more often in type 1 diabetics, with the occasional type 2 diabetic getting it. Gastroparesis can also occur in people who do not have diabetes, which is called Idiopathic Gastroparesis. Most have had diabetes for more then 10 years and might have other complications of diabetes as well. Diabetes is the leading cause of Gastroparesis, accounting for about one-third of all cases. This blog will help you with that journey.

DANCING IN THE RAIN. This is a blog created by one of my good friends, Carrie. It started off as a rheumatoid arthritis blog but has evolved into her journey with Gastroparesis when she was diagnosed in October of 2012. Updates to come but a great resource to see what living with both diagnoses is like.

GASTROPARESIS UP CLOSE AND PERSONAL. This is my friend Melony's struggle and journey with Gastroparesis. She describes it as, "I am a 26 year old woman and mother. I have had Gastroparesis for years and am fighting to raise awareness for us. I decided to start a blog to get my feelings and experiences out there in hopes I can help someone else going threw this. You are never alone!"

PATTY'S GASTROPARESIS. This is a personal blog started by Patty that documents her struggles with Gastroparesis. Give it a read, she writes great entries!

ALLIE'S GASTROPARESIS JOURNEY BLOG. This blog tells you about Allie and her struggle. She even has wrist bands you can order in support of her fight. This was also suggested to me by a fellow GPer.

SHERRY'S GASTROPARESIS BLOG. This is Sherry's personal struggle with Gastroparesis. Please read her blog and show her some support. It's hard to live with GP. I think that our readers should have as MANY resources about GP at their disposal. Because, we are all in this fight to help each other.

SMILING WITH GASTROPARESIS. This blog is written by a seventeen year old girl who lives in London. She has been diagnosed with Severe Gastroparesis, Lupus and Arthralgia. This is her blog to document her journey.

UNDIGESTED CRUD. This is a blog started by KariLee to highlight her journey with Gastroparesis. She writes, "Welcome! Find a seat, make yourself at home and bare with me! I'm new at this and I'm a little weird and crazy. I'm, a sister, daughter, cousin, and fiance! I live with my amazing, "Other Half" (OH) also know as my fiance, and my two pretty cute cats! I have a crazy obsession with my BMW. And I have the biggest, craziest love hate relationship with food! Thanks for stopping by! Be nice, don't judge me, know that I can have a bad mouth, and please, please don't correct my insane amount of spelling and grammar mistakes!"

PROVOKING BLISS. This is a blog started my Lauren. She writes, "I try to be as upbeat and positive as possible. I also tend not to take any strong stances on subjects, I believe what I believe and I respect others beliefs as well." Her blog details her journey through Gastroparesis and is a great read.

GASTROPARESIS AND ME BY JEANNE. This is a blog written by Jeanne. It chronicles her personal journey with Gastroparesis and she does have a tube, so she could answer questions for you about that if you're interested. When she was asked why the blog, she responded with, "I find myself sitting in front of social media sites wanting to say how my day went. I type my little fingers to the bone then I think that no one here would want to know all this medical stuff. I don’t think anyone who doesn’t have motility issues would understand the weird world we live in. So, I decided to write here. I can invite friends and family and welcome anyone who might like to read this. I may never have a reader, but I can distress here. If I DO happen to have a reader, then maybe somehow I have helped just that one soul."

SLOW STOMACH. This is a blog written by Irene.

JEANNIE'S BLOG. This is a blog written by Jeannie.

JESSICA'S JOURNEY. This is a blog written by Jessica to document her journey with Gastroparesis.

FIGHTING TOGETHER. This is a blog written by Amanda.

EVER GASTROPARESIS. This is a blog written by my friend Eve.

LIVING WITH GP. This is a blog written by Kirby showing how she lives with GP.

NICOLE STOPS THE SHOP. This is a blog written by Nicole about gastroparesis.

ENTER RA THERAPY. & PROVOKING BLISS. These two blogs were written by Lauren.

KRYSTAL'S GP BLOG. This blog was written by Melony to chronicle her struggle with GP.

I DANCE IN THE RAIN. This blog was written by Carrie.

MARTINA'S BLOG. This blog was written by Martina to chronicle her fight against GP.

LIFE. This blog was written by Carla to chronicle her suicide attempt and her struggles with gastroparesis.

GASTROPARESIS CRUSADER. This blog was written by Trish and she writes about her health experiences and reflections for self-healing & awareness.




Youtube:


NOT YET DEAD. This is a channel made by one of my good friends who has gastroparesis. She not only talks about that on her channel but talks about anxiety and considers her channel, "a place to talk." Her vlogs are VERY good, and I do not say that lightly.

ENTER THE WORLD OF GASTROPARESIS. Video Creator Hilary writes, "I as well as 5 million other Americans fight the 24/7 battle of a disease called Gastroparesis otherwise known as GP to those of us in the battle. Come along and take a look at what GP is and how it affects each and everyone of us."

GASTROPARESIS - CONSTANT NAUSEA BY THE DOCTOR. Stephanie (Journey with Gastroparesis) writes, "Check out this informative video on gastroparesis. It was aired on a live news program called Call the Doctor. There are 3 GI specialists who discuss GP, including interesting statistics, diagnosis and treatment options, as well as a guest patient with GP. 1st half is a discussion and review, 2nd half has live call-ins for Q & A."

DIGESTIVE TRACT BOOT CAMP. A spoof on a boot camp. It's a joke that will make you smile!

ALLIE'S TUMMY FILES. A good resource for learning things like how to turn an infinity bag into a drain bag.

GASTROPARESIS: FIGHTING FOR CHANGE. This is a channel started by Melissa to help patient advocacy for Gastroparesis. Her goal is get to awareness out about GP. The description says, "Our main group was established as a place where we can discuss ideas regarding our mission, vision, goals, needs, services, and resources and work toward solutions. If you want to make a difference for our GP community, share your ideas, fight for changes in legislation, help raise funds, and/or spread awareness, please join us in our main group and on our website at www.curegp.com as well! We would love to have you!"



Art & Gastroparesis Inspired Jewelry:

RARE ARTISTS GALLERY. EveryLife's Art Contest for Rare Diseases 2013 is accepting submissions! www.RareArtist.org The Art Contest was established to empower those affected by rare diseases to express their unique power through art. Please share the invitation, & share your art! This image, "Trusting Hands", won a special artistic merit award in our 2011 contest, by Gastroparesis patient Shelley Bertrand. RareArtist.org was created for artists affected by a rare disease. The EveryLife Foundation for Rare Diseases received many exceptional works of art during our inaugural EveryLife Art Contest which inspired us to create a venue to display this art. It is intended to showcase the Artwork and the Artist, in order to bring awareness to the rare disease community. There are almost 7,000 rare diseases that affect more than 25 million Americans.


NERDY GIRL CREATIONS ON ETSY. This is a Green's Not Easy Member's friend who makes jewelry. She's amazingly talented and decided to help further our cause for awareness by making GP themed jewelry. An example of her work is below:


JUST BREATHE JEWELRY. This is a collection of handmade, from scratch, unique and chic jewelry, created in part to donate to gastroparesis research! Use Coupon Code BLYSSBREATHEXX for free shipping! As always, $1.00 of every purchase goes to the GPD Foundation for a cure for gastroparesis! An example of her work is below:


COTTON'S CUSTOM CREATIONS. Cotton's Custom Creations originated due to the need for more awareness of the disease, GASTROPARESIS. Owner, Jonny, suffers from this disease which literally means stomach paralysis. As Jonny's partner - in business and in life - Lora began designing/creating jewelry for family and friends to help bring attention to the disease. As her designs were seen, more and more folks asked about them, wanting them for themselves, thus Cotton's Custom Creations was born. All items are created through a collaboration of Lora and Jonny's ideas. Their intent is to get this business up and running so that they can donate a portion of the proceeds to research for the treatment/cure of this insidious disease. An example of her work is below:


Websites:

GP WARRIORS. This website is to promote education and spread awareness about Gastroparesis. The website states, "We need to join together to help spread word of this illness to help generate support and awareness. I am a warrior, and I continue to try and live a positive and happy life. With the support of my family, friends, and GP family I am able to do this. I’m blessed to have such a strong support system! It is now my ULTIMATE goal to educate others on this illness, and support those around me who are suffering from this life changing disease. I am here for support, friendship, and most of all to spread awareness: so that one day we can find a cure."

http://jennifersgphouse.org/. Jennifer’s GP House, will help patients(families) that travel into Louisville, Kentucky from all over the world to be treated for GP issues. We have learned from experience that people have more worries than their stay while in Louisville. We would like to shuttle patients(families) to and from their appointments and make sure that they have room and board free of charge, while staying at Jennifer’s GP House.

YOU TOTALLY AMAZING. This website is for meal replacement, health and fitness with GP.

HELP GASTROPARESIS. "Our goal at Help Gastroparesis is to keep you informed and have a safe place where you can come, learn about your options, and talk with other patients."

GASTROPARESIS AND ME. Gastroparesis and ME, LLC, whose Fiscal Sponsor is Teen Moms Fresh Start, is for all of those who are inflicted with, or know someone surviving with Gastroparesis. The word "ME" means "EVERYONE". If you are living with something that is torturing you, but no one seems to know what is going on, it makes you feel like, "Is this just me?". That is why it is important we all work together, in the US and abroad, to help each other live and find a cure. They try and help people who can't afford treatment, hold fundraising projects, and other collaborative efforts of support. I am proud to say that I'm help them with their media site marketing.

* I always want to be truthful about groups, pages, websites, and other sources for those looking to join one. Also, you can be involved with multiple groups at one time - you do not have to pick and choose. There is no limit on how many groups you can join on Facebook. I encourage people to join many, just to see which groups are right for you. The same goes with pages and things, too.

Monday, December 3, 2012

Another Sleepless Night & Another New Symptom

I am so exhausted.

I can't sleep and all I can do is to curl up in a ball and whimper. The pain hurts. It's one huge spasm after another and the vomiting makes the pain worse. I'm pretty sure I pulled a muscle in my back vomiting this last time.

My fraternity's local alumni association had a holiday get together today. My husband is deeply involved in this organization and he's been here to support me, so I wanted to be there today to support him. The holiday get together was at a local soul food restaurant. Now, just the smell or image of food had me gagging this week, but I was determined that I was going to get through this lunch. I felt like I was marching to an execution and praying I didn't get sick at the restaurant. I took all of my medicine before I got into the car which includes Bentyl, Levsin, Zofran, Phenergan, Zanaflex, and my vitamins I've started taking. I added a multivitamin to the mix along with Vitamin B, because that was recommended to help my new symptoms of confusion. I've also been trying to add more potassium to my "diet."

I was quite proud of myself. I didn't get sick in the car and when I walked into the restaurant, the smell didn't knock me out like I thought it was going to. I managed to make myself eat a teaspoonful of dressing, two teaspoonsful of lima beans, and a few bites of banana pudding. After that, I was full. Also, a new symptom developed. Right after I ate, my belly started to swell. It looked like I was pregnant or that I had a balloon under my shirt. It was very uncomfortable and full of cramps. I actually had to change my pants later because they were too tight after I ate.

I managed to last the entire lunch without vomiting several times. I had to leave and get some air towards the end of lunch because the smells were making me extremely nauseated.

After getting into the car, the nausea became worse. Nothing helped. Not looking outside, not counting trees, not trying to relax, nothing. My stomach felt like someone was banging on it with a hammer. It was this intense, throbbing, sharp pain. It continued to do this until I got home. The spasms started happening and then I started vomiting. At least I had something in my stomach to vomit up, so it wasn't just stomach acid. My throat is still rather swollen from previous vomiting and it probably sounds and looks like I have strep throat.

I was up all last night vomiting and now I've been up all tonight vomiting. One of my friends said something, probably not meaning to be offensive but it came out that way, and I finally just broke down and cried. I sat there and cried for a good two hours. My wonderful husband, who lost his father this week, sat there and held me while I cried. He didn't ask what was wrong, he just stroked my hair. I felt so guilty because I feel like I should be comforting him, you know?

After crying, I vomited again. At this point, I left my bedroom to come upstairs to watch TV. I don't want to wake my husband up and my stomach isn't going to let me sleep anytime soon.

I managed to read all of, Gastroparesis: My Personal Journey and realized that I have the same symptoms. This isn't in my head. I can't tell you how many doctors have told me that the sickness is in my head and nothing more. I've had several friends remark about how strong I am but I don't feel strong. Then, I read something like this book and what this woman went through and it motivates me to be an advocate for myself.

I'm going to stick with facts and what I do know. I know that I vomit 6 to 8 times a day. I know that I'm dehydrated. I know that I'm still technically overweight but I've lost about 25 pounds since I was diagnosed. I've dropped a bra size and pants size. I can put two photos of me side by side from this year and last year and you can see that my face has thinned out considerably. I know that I look sick and that my skin is a weird pasty color. I know that if I make myself eat, even small and frequent meals (liquids), I will vomit.

I know that I can't leave the house without a a bucket of some sort to vomit in. I know that I have a year of college left and I'm not sure how I'm going to go to labs. I know my GI doctor doesn't know what to do for me at this point so he's referring me to the Mayo clinic. I know that I have mental confusion, depression, and my stomach becomes really swollen if I do manage to eat something. It doesn't matter what I eat, it all comes up. Liquids, solids, gluten free, gluten, etc. I've tried all of the different diets. I know that I'm scared (and I have a suspicion that I have an autoimmune disease at the heart of this problem - but I don't know what I've been tested for).

I also know that I am determined. I know that other GP fighters suffer worse than I do. I know I have loving family and friends who support me, even when I post six million times a day on Facebook to keep myself distracted. I appreciate all of the help my husband has given me and his support. Without him, I'm not sure I could do this. I know that I've found a wonderful support group online that has helped me so much with venting and answering most of my gastroparesis questions. Also, it makes me feel better to know that I'm not the only one.

I know that I'm going to keep fighting.

Saturday, December 1, 2012

Planned Giving: Using e-Bay to G-PACT’s Advantage


If it sounds a bit far fetched to use the most popular Internet auction site to benefit G-PACT, you'll want to read on a bit further to understand the true potential. Consider this for starters: eBay has raised $300,000 for non-profits so far.

eBay, the online auction company, now allows its 69 million individual and corporate customers to assign all or part of their online proceeds to GPACT. It's really quite simple. If you are a regular buyer or a seller on eBay and already have an eBay user name and password, you'll want to take just a minute to register with MissionFish, eBay's charity solution provider at http://www.missionfish.org

If you've never shopped or sold items on eBay, it takes less than a minute to register and set up your account using the same MissionFish link above.

Once registered with MissionFish, you can search for items currently on auction that are scheduled to benefit G-PACT and bid on these items yourself. You can also list items to sell designating G-PACT to receive anywhere from 10% to 100% of the proceeds from each item auctioned.

If you've been contemplating a garage sale or have items of value you feel would do particularly well on eBay, please consider helping out G-PACT as you shop and sell. On eBay, you can sell or buy just about anything from a high school yearbook to real estate.

eBay may be the largest online charitable retailer, but it is not the only one. If you shop online, you can also designate G-PACT as a recipient of up to 35% of the cost of items purchased at www.goodshop.com or www.buyforcharity.com.

When you make a gift of this type or any other to G-PACT, you will promptly receive a thank you acknowledgement letter with the charitable amount of your gift to use for tax purposes and you can help spread awareness about this disease with no cure. =)