Find us on Google+ Gastroparesis: 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

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.

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.

GASTROPARESIS AND MENTAL ILLNESS. This is a new group that I worked with a friend on. I helped come up with the concept and she executed it by making it into a group. This group is for people with gastroparesis who may be suffering from depression, anxiety, or a number of factors who want to ask questions, vent, and ask advice on how to deal with these issues day to day.

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.

SUPPORT FOR LOVED ONES WITH A GASTROPARESIS PATIENT. 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 GPERS.
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.

BLOGS FOR GASTROPARESIS. 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.

GASTROPARESIS PEN PAL OUTREACH. This is a group for all of us who are fighting Gastroparesis to come together and to find new friends to write to and keep in touch with in order to develop a support network. Having a great support network in Gastroparesis is important and writing is becoming a dying art through the mail.

GASTROPARESIS SUPPORT PEN PAL GROUP. This is a group where you can join and find a pen pal to write to. It's an era for junk mail, so when that person sees that they have real correspondence from a real person, there is a look of pure joy on that person's face. It's a great group to join. You post on the wall and when you find someone who you click with, become Facebook friends. Then, if you feel comfortable enough, through PRIVATE MESSAGING, you can swap personal information. Please do not list personal information in the group. I'm putting this in the description because there have been issues like this and it's a security risk when everyone can see your personal information.

GASTROPARESIS MEET UPS. This is a group designed to help you educate others locally and meet up with local GPers near you. We wanted a group where people (who might not even be aware) can find a GPer in their area to meet up with and to have someone to talk to regarding this illness. Again, please be careful with your personal information. Be sure to talk to people in PRIVATE MESSAGING if you want to give specific details where to meet. Asking general questions like, "where are you from?" in the group is fine.

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.

GASTROPARESIS SUPPORT WITH FRIENDLY RECIPES. 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.

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.

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 SUPPORT FOR CHRISTIANS. The group description states, "This group is open to all those who have been affected by gastroparesis or other gastrointestinal issues. We seek to support each other spiritually through encouragement and prayer. If you would like to grow spiritually, please join us."

GASTROPARESIS SUPPORT GROUP. This group is one of the largest gastroparesis groups on Facebook. The group members give advice and try to help people. The drawback to this group is that because it is so large, posts get buried and your questions might not be answered unless you bump up your post. It is a nice place to post if you need advice because it's a very diverse group with people with different experiences, just be careful that your post does not get buried.*



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. LaShelle is too.



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.

MELISSA'S BLOGSPOT. This is a blog by a woman who started Gastroparesis: Fighting For Change and is trying to bring awareness to Gastroparesis.



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."

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. =)

Friday, November 30, 2012

My Weird Symptoms Today

Today, I'm feeling a bit off. I was up almost all night vomiting again and my throat is really swollen from vomiting. I can't even swallow a cracker, so my husband gave me a bottle of sore throat spray so that I could at least try some yogurt. It's somewhat hard to swallow now but at least I'm able to talk.

My symptoms today are unusual and I wonder if it's because I haven't been sleeping or the lack of food. I woke up from a short nightmare to a panic attack. I talked myself down out of it and tried to control my breathing. I felt like I was drowning. There was so much pressure on my chest.

When that was over, I felt extremely nauseated. It's always worse in the mornings but this was worse than I've felt in a long time. It is almost like the vomit is stuck in the middle of my throat, burning it more. It's not coming up and it's not going down. Eventually, I swallow it down. But, even with the Zofran and Phenergan, I'm still really, REALLY nauseous.

My skin has also been clammy and sweaty today and I keep sweating. I've had to change my shirt twice. It's a cold sweat though, so when I take a shower and get out, I'm still cold. Also, I'm running a low fever (that goes away with Tylenol or Ibuprofen) and I ache everywhere, mostly to the left of my right shoulder blade. I guess I may have jerked wrong during my nightmare... but I'm not sure. I guess it's possible that I could have pulled a muscle vomiting, too.

I also have confusion and loss of time, which I've had in the past, the night before my first 8 day hospital admission. The confusion part bothers me. I don't remember doing certain things and I get distracted a lot easier than I used to, and I get confused easily. It makes me feel stupid. I also do things that I know better than doing but do it anyway and then forget about it, like posting stupid things on Facebook. It's strange. I know that's probably not a symptom but I thought it was urgent enough to be mentioned.

Additionally, I lose track of days and track of time. I had to buy a pill box with the times on it so that I wouldn't double dose on medication, trying to remember if I took it or not.

I have absolutely no appetite today, whatsoever. The image of food makes me ill but I know I need to eat something. I have to make myself eat, which is the hard part. The last three days, I've eaten smaller meals (usually yogurt) five to six times a day. It's really, really hard to eat so frequently but I am trying to make an effort. Also, I've started walking after eating. I want to feel better but I just feel so miserable right now.

My fraternity brothers are coming over tonight to watch a movie with me and keep me company. I really could use the distraction. It's been a long week and the week still isn't over. We're going to either watch a sci fi/ fantasy movie, or a comedy, or both. We haven't decided yet.

Monday, November 26, 2012

Sometimes I Just Want to Give Up

Today has been really challenging and it was a bucket kind of day. I was vomiting all day today to the point where my throat is burnt, worse than before. I started running a fever today and I feel all achy, kind of like you get before you get the flu. I had a flu shot. If this is a stomach virus, I will curl up into a ball and sob. I can't handle being back in the hospital right now. My stomach keeps spasming and I have a pain in my upper left side. It almost feels like I've been sucker punched. It's like one huge knot in my stomach that won't uncurl.

My doctor is still working on my referral to the Mayo Clinic. I hope something is done for this soon. It's hard to keep my anti-nausea medications down. I want to finish college and I don't want to travel with a bucket anymore. I can't be around certain friends because if I start vomiting, they will too. I feel like I'm left out of almost everything because of my illness. I'm being ignored by friends. No one comes over to my house anymore to keep me company because it's not close to MARTA (the public transportation here). It's just depressing to be shunned, even though that's not their intention. But, still, it hurts.

I'm trying to hang on to the positive but it seems like the negative keeps out weighing it. This is just a lonely road. People keep telling me I'm strong but I don't feel strong. I miss being social and I miss my friends. I've made some really great ones on the Gastroparesis community page on Facebook. They've given me some great advice. It's just hard to stay optimistic all of the time when you're always bent over the toilet or a bucket.

I guess I'm just full of self pity tonight. I loved when people came over to hang out with me, it would distract me. I really could use the distraction.

I just don't know what to do anymore. I'm feeling so sick and I'm so frustrated by being so sick and not being able to do the things I love to do. I wish I could just get rid of the pain and constant vomiting ... but the sad thing is, I know people have this worse than I do. That makes me feels selfish that I'm whining so much.

Thursday, November 22, 2012

My First Thanksgiving with Gastroparesis

After sleeping for two days straight out of pure exhaustion, today was my first Thanksgiving since I was diagnosed with Gastroparesis in March. I've been up the past two nights all night, vomiting. I finally got to the point where I laid down on my pillow on the bathroom floor by the toilet. My husband is one amazing person and I love him so much. He stayed home with me on our 8th wedding anniversary because I was too sick to go anywhere and he brought me flowers.

I made an event for Gastroparesis Awareness today to get the word out about my disease and a lot of my friends wore green today to support those of us who cannot eat. I thought it was incredibly nice of them, especially since many of them were traveling.

This is what the Facebook invite said (with a couple of additions that I wrote),

This Thanksgiving, please say a prayer or keep the people who are unable to eat in your thoughts. My friends are wearing green today to support those who cannot eat.

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. Most people take for granted being able to wake up every day and sit down to a good meal. Those with Gastroparesis just can't.

Why? Because when your stomach stops working, you lose your ability to eat. Symptoms of Gastroparesis include non-stop nausea, Vomiting, severe abdominal pain and cramping, unintentional weight loss, unintentional weight gain, feeling full after eating very little, bloating, heart burn, loss of appetite, anemia, and reflux. It affects our quality of life so much that we are unable to do the things we used to love and we lose friends because some friends don't understand.

I hate being told this is all in my head when I know it's not. I miss hanging out with my friends. It feels like I'm stuck in my house on house arrest.

Imagine having the stomach flu 24/7 and it never goes away! Imagine having to starve because you physically can not eat. Everything you eat comes back up and then it feels like you have strep throat because the stomach acid has burnt your throat from vomiting too much. Also, having severe cramps after you eat and constant muscles spasms almost condition you not to eat.

Imagine being tired all of the time and dehydrated because you can't keep anything down and making monthly hospital visits for fluids and medications.

FIVE MILLION Americans are suffering and chances are you have never heard of this disease. We want 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. So we need your help.

We need the government to focus on a research for a cure for Gastroparesis. The one we had before failed. Let's see this one succeed! Spread it around like crazy because no one should starve to death. This petition I've created will bring some awareness to the disease. I'm not necessarily trying to get the government to fix it, but I would like them to be aware of this since it's an, "invisible illness." That's the tough part because people look at you and assume you're fine. They don't see the zip lock bags you keep in your purse in case you vomit in public or a bucket in the car.

You can view and sign the petition HERE. It only takes a few minutes and I could use the help. Pass this around to your friends, even my blog if you have to, just to show them how horrible this disease it and what little the doctors can do as of right this moment. I know it's not cancer but people still DIE from this disease. That's why I'm terrified to go to the Mayo Clinic. I'm scared of all of the TREATMENT OPTIONS.

Join our cause on Facebook by liking the Gastroparesis Community Page in the link below and send it to others. Feel free to share my blog with everyone because no one deserves to starve to death. We shouldn't be unnoticed, written off, or passed over by the medical community because of the limitations of research and medication. My doctor here really doesn't know how to treat me except with pain and nausea medicine, and the medicine only works when it stays down ... which is one of my problems.

GASTROPAREIS COMMUNITY ON FACEBOOK

If you are on Facebook, I recommend the Gastroparesis support group listed above. They have people who care and who understand what you're going through. I feel so at home there and I know I can ask questions without feeling embarrassed. The people there also have the most wonderful advice. It got me through to day because my vomiting is so severe, even food smells make me sick. It's nice to have a group of people who will listen and share their experiences with you.

I live in the South where food is a big part of our culture ... but right now, it's my enemy. My stomach is bloated from trying to eat sweet potatoes earlier. I need to make an appointment with the nutritionist but I'm not sure that will help because I vomit up everything.

Something has to change soon. I miss my life. I miss my friends, my brothers, my family, and date nights with my husband. I just feel so lost sometimes and I feel like I want to give up. But, I'm determined to fight until someone does research on this disease. There has to be some way to repair the nerve damage to make the my stomach muscles work again.

Thank you all for sending positive thoughts my way. I need them. I feel so awful complaining all of the time when I know people have this worse than I do. Thank you for taking the time to read my blog and to take this journey with me. It does mean a lot that I have so many caring people in my life.

I just don't know what to do about school. I'm scared to register because I'm not sure what the Mayo Clinic is going to advise yet. It may be more surgery.

**PLEASE SHARE WITH YOUR FRIENDS TO SPREAD AWARENESS**

Share this blog entry and let's all coordinate a date to wear green. Does anyone know where I can buy a green ribbon for Gastroparesis?



FACES OF GASTROPARESIS VIDEO. Be sure to look for me and my online GP friends.








Monday, November 19, 2012

GI Doctor Visit Today

I went and saw my doctor. I didn't sleep last night because I vomited ALL NIGHT LONG! Ugh. I was feeling fairly OK until I got to the waiting room. Some of the doctors were running behind and it smelled like all of the women there had bathed in cheap gas station incense before sitting down. I stood up by the door, instead of sitting down, and eventually ended up sitting in the hallway with an emesis basin until I was called back into a room.

The doctor looked over all of my notes and basically told me that he didn't know what else he could do for me. He told me that I had a Motility disorder, nothing structural wrong, which I knew. I was diagnosed with Gastroparesis in March of this year.

None of the drugs are working for me (I've been on Bentyl, Zofran, Phenergan, Levsin, Motilium, and Nortriptyline). The Motility Specialist my GI doctor sent me to said my GP wasn't severe enough for her to treat. I think she's very wrong.

So, my GI doctor is referring me to the Mayo Clinic for treatment and I'm a bit scared. I vomit 6 to 8 times a day. I stay full for days, even up to a week and a half. I never seem to have gastric emptying - it's mostly all vomited back up. He's also testing my liver enzymes again, since they're usually high.

I've had severe insomnia because I stay up most nights just throwing up. I'm exhausted and my throat is burnt. I'm not hungry and my stomach is swollen. I'm just miserable.

My question to those more experienced than myself - what can I expect from the Mayo Clinic? Do you know how long it will take to get an appointment there? What are the treatment options when the drugs are failing to work? Has anyone else had much luck controlling their gastroparesis with the Mayo Clinic?

I've found these TREATMENT OPTIONS provided by the Mayo Clinic. None of them sound fun and I'm scared to death of a feeding tube.

I'm just scared I'm never going to finish college at this point.

Thursday, November 1, 2012

Post Implant Surgery & Updates

I had back surgery a week ago on Tuesday and had my staples pulled out on Tuesday of this week. I thought the staples weren't going to hurt as they were being pulled out buy I was so wrong. The doctor started removing the staples and I started crying. She asked me if she needed to stop for a minute to get myself together but I declined and told her to keep removing the staples. She said that I was a trooper and kept pulling them out. I guess my back healed over or around the staples to cause that much pain. Now, my back looks like something in The Nightmare Before Christmas.

I have to stand or sit up straight so that the implant works but it has helped control the knee pain. When I recover and my back heals completely, I am going to work myself back up to hiking because I miss it so much. That should help with the gastroparesis. I've also been chewing gum. Even though the smell and the taste of it makes me ill, I'm chewing it anyway for my digestive system.

The vomiting has cut down from 8 times a day to about 4 to 6 times. I am hoping it will continue to fall because my pain response in my knee has been corrected. My stomach still has a lot of cramping - even with the Bentyl and Levsin. I need to make an appointment with my GI doctor for more anti-nausea medicine. I wish he would just give me a year's full of refills on phenergan and zofran. I'm going to need them for a while. Does anyone else have this issue? I'm actually curious. i have to use a four columned pill box because I have so many to take. My pills could be a meal in themselves.

I need to find a primary care doctor where I live. I need to keep all of my records in one place and a PCP would be easier to get into. If you have anyone you think is amazing, just message me or write me an email.

My back is really sore since they pulled out the staples and my stomach is cramping so badly that I double over in pain. I have to ride in a car with a bucket but it's just dry heaves at this point because there is nothing in my stomach to vomit up. The acid has burned my esophagus so my voice fades in and out. It almost feels like strep. I'm on medication for acid reflux but it doesn't seem to help the vomiting. It's hard to swallow my pills.

I've also been very lethargic with almost no energy. It takes everything I have to get out of bed. It's not that I'm sleepy, I just have no energy. I know that I'm dehydrated but I've been trying to drink as much as I can.

I just don't know what to do about my stomach. I don't know how to live with this. It's hard to adjust to and my friends don't understand. Most of them don't come over anymore to hang out with me, even though they know it's hard for me to leave my house. Four or five of my friends have come over to spend a few hours with me but that's about it. I don't even get calls to makes sure I'm OK. It depresses me, especially since I am part of a fraternity. I know people are busy and I'm just wallowing in self pity. But sometimes, you just need that extra boost of confidence from your friends, you know? I wish I could make them understand what I am going through. I mean, I know that I'm sick but they scheduled events and then don't invite me to them or tell me about them. It hurts. I just feel so isolated. My house used to be the hot spot but not anymore.

So, I'm up at 4am, vomiting on and off, and trying not to re-injure my knee. I managed to feel well enough to leave the house this past weekend for my husband's 42nd anniversary of the founding of his chapter of his fraternity at the TELLUS. I also attended the wedding of my friends J.D. & Lisa. They had a beautiful wedding and I was so excited to leave the house.

I just feel really alone, which is stupid because my husband has been amazing. My sister is here to help me, also. She just went through a bad breakup so I'm worried about her.

Well, enough about me for now.

TDRL; The Implant is helping, I feel alone with my friends, and I'm vomiting.




Picture of my back after the stapes were pulled out.




Getting ready for the wedding and classing it up!





Getting ready for my husband's fraternity chapter's 42nd anniversary.


Wednesday, October 24, 2012

Post Spinal Stimulator Surgery - Day 1

I had my surgery yesterday to have my spinal cord stimulator put in. Information about a spinal cord stimulator is HERE. The surgery wasn't bad. They put me completely out. I didn't even realize they were doing it until I saw this huge syringe. It looked like a PVC pipe.

This is day one. I do not have as much knee pain as I did before. I can actually sit Indian style without having severe pain. My back is really, really sore from the surgery so it's a bit hard to sleep. I am a bit tired today but I'm feeling a little better. I want to sleep but every time I try, I lay on my back and it jerks me awake because it hurts so bad. I have staples in my back and they are going to remove the staples in a week. I can't bend, lift, twist, take a shower, or anything before the staples come out.

I vomited once last night after I got home. I hope that this stimulator will cut down the vomiting since vomiting is also my pain response. Since I no longer have to worry about my knee, I can focus on the gastroparesis and see if that's where the vomiting is from.

I bought a cook book for GP with recipes that will be easily digestible. The problem is that if I eat six small meals a day, one small meal will fill me up for the entire day. I'm not sure how this is going to work because nothing seems to stay down.

I looked at pictures of me from last Christmas and now - I've lost so much weight. My face almost looks sunken in and pale. This is not the way I wanted to lose weight. My stomach is also bloated and swollen. I have severe cramps when I do try to eat, even with yogurt. I've been drinking a lot of apple juice but that's hit or miss with the vomiting, too.

I'm looking forward to hiking again though. =)

Sunday, October 21, 2012

18 Year Dies from Gastroparesis Complications

This is why I started this blog. I wanted to share awareness with you all. I have the same disease this girl did. Please read the article. There are several points I want to convey to help you understand what I go through on a daily basis.


We need more awareness. No one should die because of this disease. My heart aches for her family and friends but I'll keep fighting for her and my other GP members. This just motivates me to do more and keep fighting. I know that I've been feeling discouraged lately, but this was the kick in the pants I needed to snap out of it.

Pay attention to the bold texts. That's similar to my story.



SPANISH FORK — A Utah woman who recently died from Gastroparesis is raising national awareness about the disease and inspiring people across the country. Haley Stonehocker of Mapleton died in her sleep on Thursday night. Her family and friends say she was the first one to help comfort anyone in need and she left this world wanting to help educate more people about her illness.

With a green ribbon on their chests, members of the G-Pact online community (Gastroparesis Patient Association for Cures and Treatments) gathered at Haley Stonehocker's funeral - standing together to honor one of their own. They call themselves "GP Sisters."

The women, who are in their early 20s, traveled from Boise, Reno, Denver, Syracuse, and the Salt Lake City are for the young woman they met just a couple of years ago. Cortney DeHoyos traveled from Denver, Colo. to honor Stonehocker and says she inspired her to help educate others about the illness.

"I had to drop out of college because I'm so sick all the time," said Cortney DeHoyos. "I'm constantly in and out of hospitals."

DeHoyos said having the illness can be discouraging for young people who suffer with symptoms daily.

"Sometimes people find our illness so unique and rare so it can't be real," said DeHoyos. "So we must be making it up."

"It (Gastroparesis) basically took me from being a mom to being in bed 24-7,"said Chelsea Rushton of Syracuse. "And having my parents raise my kids."

For Rushton the emotions of losing her friend are still raw. Just weeks ago, she visited Stonehocker in the hospital.

"We would text all night," said Rushton. "My husband would tell me ‘get off the phone and go to bed.' And I just couldn't."

Gastroparesis is a condition that affects all ages and races. The disease inhibits the stomach muscles' ability to function properly, which can interfere with digestion. It causes nausea and vomiting, and affects the body's ability to receive proper nutrition. Stonehocker became bedridden and was tied to a feeding tube in the hospital. Patients describe the illness as having the constant feeling of morning sickness or having the flu every day.

"It's very difficult just driving on the road. Many of us are nauseous just sitting in bed," said Maddie Cullen of Boise.
Related Stories:
Bedridden 18-year-old hopes treatment will help rare condition
Haley Stonehocker is a bright and charming girl who just turned 18. But the just-turned- adult is dealing with more than adulthood now.

Cullen is studying at the University of Utah and hopes to become pediatric gastroenterologist. She said Stonehocker inspired her to want to help kids suffering with Gastroparesis.

"We've already lost a few (people) this month to GP,"said Cullen. "It's a lot harder than older people who have passed away or lived more of their life. She (Haley) never got the chance."

Some say having the disease is especially heartbreaking for younger people because they say their peers just don't understand what they're going through. Some say they've lost friends because of the disease.

"You don't know if you're going to wake up and feel nauseous," said Stephanie Hyatt of Denver, Colo. "And go somewhere and have to go vomit in the bathroom and cancel on friends."

Hyatt said belonging to the online community with Stonehocker was a tremendous strength to her.

"She'd always say that I'm such a beautiful person inside and out," said Hyatt. "How I could make it through everything."

Colleen Beener sits on the board of G-Pact. She says it's not clear how many people nationwide suffer from Gastroparesis mainly because the illness is often misdiagnosed as an eating disorder.

"There are very few good doctors who understand this disease," said Beener.
"We've already lost a few (people) this month to GP. It's a lot harder than older people who have passed away or lived more of their life. She (Haley) never got the chance."
–Maddie Cullen

Beener said most people with Gastroparesis travel hundreds of miles and go to other extremes to seek diagnosis and treatment.

"There's just not a lot of understanding of this disease. There's not a lot of research going on about this disease. There aren't any good medications in this country for the disease," said Beener. "Most of us that find something that works we get it out of the country and it's not FDA approved but we do it anyway because it's the only way we can get through the day."


Dr. Troy Madsen, University of Utah, confirmed that Gastroparesis is difficult to diagnose.

"There isn't a blood test that can simply diagnose it," he said.

Madsen said the tests to diagnose the illness are invasive and can result in inconclusive diagnoses. Still, he recommends patients seek a gastrointestinal specialist to better diagnose the disease.

Tuesday, the group released green balloons at the track and field grounds of Maple Mountain High School where Haley Stonehocker was a track star. Alli Baker shared that interest with Stonehocker, who inspired her to run track and field even while suffering from her Gastroparesis symptoms.

"I always carried that never ever give up mentality that Haley always taught me," said Baker. "Mine's not as severe as hers so I was running for her and those people who couldn't do it when they wanted to."

The GP sisters took one final lap around the track for their friend Haley. It's a gesture of hope - for more education, better diagnoses and treatment so that those living with Gastroparesis will have a better quality of life.

The link to this article can be found HERE.

Saturday, October 20, 2012

Updates on GP Management

I just downloaded a book that I hope will help that I found through the Gastroparesis community on Facebook. It's called, "Living Well with Gastroparesis" by Crystal Saltrelli. It has 75 recipes that should be easier for me to digest. I'm also going to try and keep a food journal to see what works and what doesn't.

What makes me happy about this book is that the author's story sounds strangely like mine. She went to the doctor and was diagnosed with Gastroparesis without hearing that word before, ever. Then, she went to the Motility Specialist who wrote her off because the Specialist felt that she wasn't a severe case, even though she was hospitalized over and over (much like me) for nausea, vomiting, and severe pain. It's just scary how similar my situation is to this woman.

The recommendation is to eat six small meals a day but that's challenging for me. I'm usually full after one small meal for several days, IF it stays down. I went to the doctor yesterday, dehydrated, and my blood pressure was back up to 140/110 because I was in pain and spent the last three days vomiting. I vomit, on average, about 6 to 8 times a day. Mostly, it's just green stomach acid because there's nothing left to come up at this point. Liquids won't even stay down.

I hope this book will help me learn to manage this condition. She says that the gastric pacemaker worked wonders for her and helped her to digest food easier. This was mentioned to me once by my GI doctor, but I haven't heard much else about it.

I can't live this way anymore. I can't leave my house without a bucket. I barely eat. I've lost 20 pounds. The doctors aren't sure what to do. The Motility Specialist doesn't want to see me until I need a feeding tube but I'd prefer not to have it come to that, you know?

I'm lethargic and tired. My friends don't want to hang around me, because let's face it, I can't go anywhere with my head shoved into a bucket. I just feel isolated and alone sometimes - and it hurts because no one understands this condition. My husband has been my rock and has been really supportive. But, I miss going out, even little things like to the movies or camping. The smell of food makes me really ill. I have to hide away from it when people are cooking downstairs.

I went to my regular doctor yesterday. He gave me Phenergan and Bentyl, which have helped in the past but it's hard for me to keep pills down. My stomach is bloated and swollen with severe pain. My skin is clammy because I have a fever. I managed to catch some kind of stomach virus ... and let me tell you, that plus gastroparesis makes me feel like I'm dying. The doctor wanted to put in an IV to hydrate me, but I was so dehydrated that he couldn't find a vein...not even in my FOOT! He said I should go to the emergency room but I just couldn't bring myself to go. I didn't want to wait 6 to 8 hours to be given pain and nausea medicine to be sent home just to have it all repeat over again. I want help managing the problem - not masking the symptoms.

Tuesday, I have a surgery scheduled for the Spinal Cord Electrical Stimulator (back surgery to control the nerve damage). This should help the nerves in my knee from misfiring me to tell me my knee is in severe pain. I'm hoping this will cut the vomiting in half as vomiting is also my pain response. That way, I can tell what is coming from my stomach and my stomach alone. Also, this will help me to walk again without making me feel like I've broken a bone in my knee. Walking is supposed to help digestion.

I will start the food journal tomorrow. I'm going to browse through these recipes to see if I can find anything worth making. I might have to make my husband do it because anything involving cooking or being near food makes me ill. I don't know if it's just in my head or what, but I can't deal with strong smells right now. I've been resting and trying not to push myself. I've been trying to drink gatorade, apple juice, and eat yogurt. Soft things that won't be too harsh on my stomach. I ate rice last night which was a bad mistake because now I have horrible gastric cramping. Before long, I just might have to buy some baby food and go from there.

What's even worse is that I've felt too sick to do anything. It's like everything I used to care about isn't even a priority at the moment because I am just so ill. I hate feeling that way. I miss my friends. I miss my family. It's even hard for me to play a video game because the games make me motion sick.

I just wish doctors wouldn't write me off because I'm not in need of a feeding tube yet. You think that they'd try to keep me from getting one, right? I'm just not sure what to do at this point. I don't want to be hospitalized for another 8 days but at the same time, I'm too weak to even take a shower to wash my hair.

Please Sign This Petition

Hello everyone,

I wanted to make a personal plea to all of my friends and family. This petition effects me personally. I would like to spread awareness about this rare condition, for doctors to find better treatment options (I've been hospitalized 16 days so far with a lot of invasive procedures, which you guys have read about), and I want a cure found for this condition. I know that you read my blog, so you know how bad I've been sick for the past seven months.

This would mean a lot to me. We need 25,000 signatures and we only have 130 so far. Please, take a moment to sign your name and please share with your friends. I can't tell you how miserable I am and I would like some more research to be done on this condition.

For those of you who may not know what gastroparesis is, it's when your stomach muscles are paralyzed, so you have delayed gastric emptying. In my case, my food doesn't stay down and I vomit at least 6 to 8 times daily. I have to carry a bucket in the car when I go anywhere. This is no way to live. And of course, the doctors can give me pills to control the nausea, but those don't stay down either.

Please, I'm begging you from the bottom of my heart, please sign this. I really need your support right now. There are many people out there who have this condition worse than I do. The only treatment options currently are sticking a pacemaker into your stomach, having a gastric bypass, and a feeding tube. None of those sound like fun.

I would like to finish my last year of school. I can't do that vomiting the way I do now. So, please, take the time to just put your name on THIS PETITION.

I thank you in advance for being a good friend and supporting this cause. It means a lot to me. Really and truly. I want a normal life again. While that may not be any time soon, this petition gives me hope. Please, give me hope by signing it.

The url is: https://petitions.whitehouse.gov/petition/gastroparesis-gp-we-need-more-awareness-and-funding-it-effects-all-ages-and-races-more-research-no/SNw7GMp8

Thursday, October 4, 2012

Inspiration and How to Keep Your Marriage Strong During a Chronic Illness

I have found an article about keeping your relationship and/or marriage strong during a chronic illness. It can be tough to the caretakers because they may not know what to say or how to say it. For those of you who are caretakers, you should join the GREEN'S NOT EASY FACEBOOK GROUP for support from others who understand what you're going through. Now for the article. It says,

Chronic illness can strain your marriage to a point where you may feel like leaving. However, there are things you can do to cope with this challenge. You and your spouse can be there for each other through these hard times.

Instructions

1. Keep lines of communication open. Realize that a chronic illness in a marriage is an issue both of you have to cope with, not just the sick one. Help each other accept the illness and the negative feelings that you both sometimes feel.


2. Nurture your spouse in times of pain even if you don't feel like it. Be careful not to grow too dependent on taking care of her through her chronic illness, though, so you don't feel resentment when she gets stronger and wants more independence.


3. Allow each of you to have time alone. You should get away at least once a week and do something fun. Take a walk or do something creative.


4. Pursue your interests just as you would if you both were well. It's tempting to push aside the things you enjoy, such as art or sports because you feel you must be there for your ill spouse. After your spouse has accepted the illness, he should modify the activities he enjoys rather than give them up.


5. Take vacations together. Even a visit to sympathetic family members renews you. A change of scenery will give you both a breath of fresh air and allow you to get your minds off the illness for a while.


6. Set up as many activities as possible that don't have anything to do with the illness. Volunteer together at a local nonprofit. Take a course at a community college. Do fun things weekly with your children or grandchildren.


7. Establish a strong support network. This could include counseling to help you cope with the chronic illness. Talk to trusted family members and friends about your worries. It will help you cope if you've got an outlet for your anxieties. However, be careful not to betray your spouse's privacy.







How to keep your marriage strong during a chronic illness HERE.

Wednesday, October 3, 2012

Research sheds light on debilitating medical condition

Researchers from the Auckland Bioengineering Institute (ABI) have accurately mapped the patterns of abnormal gastric electrical activity that occurs during gastroparesis, a debilitating stomach condition.

Dr Gregory O'Grady, from the Auckland Gastrointestinal Research Group based at the ABI, says the new findings provide for the first time an accurate and detailed description of gastric dysrhythmias in humans that will help in the development of new diagnostic and treatment options.

Gastroparesis, which affects predominately women and 10 per cent of diabetics, is a medical condition that affects the stomach's ability to empty itself resulting in a reduced quality of life due to chronic nausea, vomiting, abdominal bloating and pain.

Abnormal electrical activity in the stomach or gastric dysrhythmias was known to be associated with gastroparesis but until now no accurate descriptions of these abnormalities existed, says Dr O’Grady.

“This is because previous research had been impeded due to there being no adequate methods to investigate gastric electrical activity,” he says.

The research project involved surgeons, engineers and biomedical scientists from The University of Auckland, the Mayo Clinic in the US, and The University of Mississippi.

The Gastrointestinal Group’s research, which was published in the prestigious international medical journal Gastroenterology, required several years of technical development.

“We developed new clinical devices consisting of sheets of hundreds of electrodes that could be laid over the stomach to precisely track electrical patterns during surgery. A new software platform for processing these patterns also had to be developed by the research team, says Dr O’Grady.

“Gastroparesis is a devastating disease that is particularly difficult to diagnose and treat, and its causes have been poorly understood. Our research provides significant new insights into the disease, and opens the door to advanced new treatment options such as the use of gastric pacemakers, he says.

“We hope that over the next few years our devices will evolve into routine clinical tools for diagnosing gastroparesis as well as other significant disorders of stomach function,” says Dr O’Grady.

The research programme was led for many years by the late Professor Andrew Pullan, a principal investigator with the ABI and a member of the Department of Engineering Science within the Faculty of Engineering, who passed away earlier this year.

The research is continued by Dr O’Grady, and the other lead investigators of the study Drs Leo Cheng and Peng Du from the ABI and Professor John Windsor from the Faculty of Medical and Health Sciences.

The research was funded primarily by a project grant from the Health Research Council of New Zealand (HRC).

The University of Auckland

The Link is HERE.

Also, I feel this way right now: