Find us on Google+ Gastroparesis: Request for Gastroparesis Progressional Timelines, GP Stories of Hope, and ER Stories

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Friday, October 19, 2018

Request for Gastroparesis Progressional Timelines, GP Stories of Hope, and ER Stories

Request for Progressional Timelines


In May of 2013, I asked you guys to send me progressional timelines, which some of you did. First, let me explain what it is.

A progressional timeline that I'm looking for includes sequential years for - what happened right before you got sick, when you got sick, doctors visits and what they told you, any pain specialists, testings, test results, and your symptoms when you first got sick and symptoms before and now. Also, what do you think caused it? Include that in your timeline, too.

In addition to that, please write the dates for when you discovered other medical conditions before and after Gastroparesis. Please include whether you still have your gallbladder and/or appendix. If you no longer have your gallbladder and/or appendix, please put the date/year that you had it/them taken out.

Were you diagnosed with Gastroparesis after your gallbladder was removed? Where you diagnosed after your appendix was removed? When were you diagnosed with EDS or Dysautonomia or both? Do you have all three, including Gastroparesis? Have you been diagnosed with more autoimmune illnesses once you were diagnosed with the first one? Do you have lupus or any other autoimmune illnesses? Please include those in your timeline, too.


I want to compare this to other people's progressive timelines. My goal is to find a common link between all of us and our Gastroparesis and maybe it might shed some light on why we are diagnosed with other chronic illnesses. I know it will not be exactly scientific, but it IS a start and everyone has to start somewhere.

Additionally, I can post results anonymously. If you wish to remain anonymous, just please let me know in the email that you send. I will ALWAYS respect your privacy.

Here is an example of a progressional time line that was sent to me:





Source: Withheld for privacy but this is what I am looking for.





PLEASE EMAIL YOUR TIMELINE TO EMILYSSTOMACH@GMAIL.COM AND INDICATE WHETHER YOU WANT TO BE ANONYMOUS OR NOT. ALSO, I NEED YOUR CONSENT STATED IN THE EMAIL THAT IT'S OK TO USE YOUR INFORMATION FOR RESEARCH AND PERMISSION TO HAND OVER ALL OF MY RESEARCH AFTER I WRITE MY PAPER TO A MEDICAL RESEARCHER WHO WOULD LIKE TO EXPAND ON MY RESEARCH. PLEASE INCLUDE YOUR CONTACT INFORMATION IF I NEED TO ASK YOU ADDITIONAL QUESTIONS.

Also, I wasn't trying to yell, but I wanted that to stand out since a medical researcher has gotten wind of the project. Keep in mind that when I hand over my research to her, names will be omitted but it could be a game changer for GP since this has never been done before.

I would like to receive a variety of samples - Idiopathic GPers, Diabetic GPers, Pediatric GPers, and Newly Diagnosed GPers. I want a variety of data to work with. So, if you think that you're not important because you're new to GP, you'd be wrong. I would also like to include the same with those with Ehlers Danlos Syndrome and Dystonia<.

Also, please include your age, for data grouping, and if you want to include a short bio, you can do that aww wool Please also include your name and contact information in case I need to follow up with you in depth with your timeline for any questions/concerns.

Also, if you can't remember dates, you can approximate or just write out your GP/DTP/Dysautonomia/EDS medical history. I can work with that, too. Excel might be the easiest way to put your information down.

Thanks again for participating in this research project for progressional timelines.




Source: Unknown




Emergency Room Stories Request


From my website EmilysStomach:

I am also collecting Emergency Room (ER) stories from people who have Gastroparesis (and/or any other invisible, chronic illness) because I want people to be aware of how we are treated when we go to the Emergency Room.

I feel like these stories will bring more awareness to what we go through as people who are battling chronic, invisible illnesses. I feel like the way we are treated is unfair and not right.

Doctors took an oath to help others and so what if the people coming in are drug addicts? Drug addicts can't have medical emergencies? They shouldn't judge but help instead of dismissing us.








"The Hippocratic Oath is as follows,

"I swear to fulfill, to the best of my ability and judgment, this covenant:

I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.

I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.

I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.

I will not be ashamed to say 'I know not,' nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.

I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.

I will prevent disease whenever I can, for prevention is preferable to cure.

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help."




If you would like to share your ER story/stories with me, please email them to me: emilysstomach@gmail.com.






One of my friends went to the Emergency Room last week, they dismissed her as a drug addict, and so she went home and committed suicide because she was tired of the medical system failing her.



If you are thinking about suicide and/or suicidal thoughts, PLEASE call your doctor! You are NOT alone!



Please see my blog article here, about Suicide and Chronic Illness:

http://www.emilysstomach.com/2014/10/sucide-and-chronic-illness.html




Source: https://www.shape.com/shop/etsy-jennybagwillart-suicide-prevention-jewelry-suicide-awareness-necklace-mourning-pendant-loss-of-loved-one-mental-health-jewelry-broken-heart-depression-pf418f0080029bb3529326ba6fb6c5f49.html




These are why your stories are so important - "Stories of Hope" or your "Emergency Room Stories." You may just save a life and you might not know it.

This "drug seeking" stigma has got to stop.

My neighbor is a nurse at an Emergency Room, by where I live. She told me that Gastroparesis was not real, and the people who came into the ER where she worked who claimed had Gastroparesis, only wanted pain medicine. I wanted to tell her that it would have been a lot easier for me to buy drugs off of the street than to spend thousands at an Emergency Room, and then being poked and prodded one hundred times! Additionally, when you are THAT sick to go to the Emergency Room, you should NOT have to fight for basic healthcare.

I have three different tests that prove I have Gastroparesis, and I cannot make those results up. I am not sure if doctors or nurses do continuing education, but more and more people are being diagnosed with Gastroparesis and other invisible illnesses.

The Hippocratic Oath states,

"I swear to fulfill, to the best of my ability and judgment, this covenant:

I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.

I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.

I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.

I will not be ashamed to say 'I know not,' nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.

I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.

I will prevent disease whenever I can, for prevention is preferable to cure.

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help."

I do not see anything in there about judging patients and refusing to help them. What is I was a full blown medical addict? What if I was having an honest emergency and needed help? Would I have been judged and sent home to die?

If you would like more information about what is listed here, or if you want to share my blog entry with what is listed here as well, my blog address is: www.emilysstomach.com.

One of my GP friends had that happen (she was not a drug addict though) to her. She went to the Emergency Room where they treated her like a "drug seeker." She was having problems breathing I think, and so the doctor gave her a breathing treatment and sent her on her way. She died at home later that night because her lungs filled up with fluid. The doctor didn't do an x-ray, keep her overnight or anything that could have saved her life. I still cry.


Okay first thanks to all of you who have submitted your ER stories! They have been collected and will be put into slides but have already been listed to the website www.facesofgp.org, in collaboration with my friend who runs that site and they will also be listed in my blog, and my website.

Now for my next request. I want as many faces and personal stories of who you are, when you were diagnosed, how your disease and treatment has affected your life. You can use your first name and last initial or I can make up a name for you (just let me know), but listing your state would be amazing if you feel comfortable with that.

You can email it to me at: emilysstomach@gmail.com

And/or you can post it in the group information below:

Www.facebook.com/groups/FacesOfGP

Together we will make a difference! Again, once the presentation is complete, it will be made available to anyone who would like to advocate to your local hospitals and doctors.







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