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.

Brain Fog: What It Is, Causes, Symptoms, Treatments

We all know that feeling; We try to talk to others and cannot find the words. We forget the words we want to say, or know the words we want to say but cannot seem to spit them out. We forget activities and memories. We forget what we need to do unless we write it down. It is VERY frustrating to everyone involved.

Source: Imgur



My husband will get very frustrated with me, because unless I religiously write things down, I forget things all of the time. He has a trip he's going on for work next week, actually, and I forgot the conversation we had about it when he told me he was going. Now, I write in my Gastroparesis Journal constantly and I use my Google Calendar to remind myself of appointments, when my husband has work out of town, birthdays, and everything that's important to me. I love Google Calendar because they will send you reminders like text messages, emails, and popups.

I have to make lists of things I need to do that day. My memory used to be amazing, but since I was officially diagnosed with Gastroparesis, my memory is NOT what it used to be. I could remember dates without issue, remember to go to the pharmacy, and that kind of thing. Now, it is like I have no short term memory and my long term memory seems blocked, most of the time. I cannot even tell you all of what I posted on Facebook yesterday, for instance.

I wanted to research into what causes memory loss, which I call "GP Brain," others call it "Brain Fog," and if there is any hope of reversal. I do know that I need to recognize my limitations, now that I have it, and try to adjust accordingly. I ask others to be patient with me and explain my situation a little bit to them. I carry notebooks and my journal in my purse. And, like I said, I use Google Calendar. It is hard to adjust when you had an excellent memory before, but life is about adjustments and it isn't always fair. You need to find what works for you.

Source: http://edoriumjournals.com/blog/brain-fog-get-rid/ They state, "When it comes to the brain, the urgency and importance of the issue increases manifold because life productivity takes a serious hit if the brain isn’t functioning at its optimal best. A muddled sensation though normal at occasional times, chronic forgetfulness or mental slowness is not and therefore, one should not take brain fog lightly at all."





What Is Brain Fog?


According to the Edorium Journal, they describe these issues at the cause for Brain Fog:

"With the progression of age the deterioration of memory is the norm, a part of the natural process of life. However, the slow fading of memory is sometimes aggravated in the prime of life and even young people at times, experience clouded feelings and momentary lapses in thinking. This phenomenon is commonly known as brain fog or brain fatigue. However, this is not a mental disorder or a medical condition in any sense rather it is a term to explain certain symptoms that can affect a person’s ability to think clearly.

Whenever someone experiences forgetfulness, feels utterly confused while tying up thoughts, or has disorganized thinking, or has inability to focus or is hard pressed to put their thoughts into words, they are experiencing brain fog. This fatigue of the brain can be caused or exacerbated by certain conditions or situations. An understanding of the common triggers that cause brain fog is necessary to avoid its occurrences as well as to maintain good health practices. A clear-thinking and healthy brain is the pre-requisite to a healthy living.

Whenever someone experiences forgetfulness, feels utterly confused while tying up thoughts, or has disorganized thinking, or has inability to focus or is hard pressed to put their thoughts into words, they are experiencing brain fog. This fatigue of the brain can be caused or exacerbated by certain conditions or situations. An understanding of the common triggers that cause brain fog is necessary to avoid its occurrences as well as to maintain good health practices. A clear-thinking and healthy brain is the pre-requisite to a healthy living."

Source: Imgur



What Are The Symptoms of Brain Fog?


Additionally, according to Edorium Journal,

"This mental fog or cognitive dysfunction as it is also known shows a number of symptoms.

1. low energy or tiredness, including chronic fatigue syndrome,

2. irritability due to inability in concentration,

3. poor working memory causing hindrance in executive functions,

4. decreased ability in memorizing or remembering things,

5. impaired or delayed information processing ability,

6. dwindling motivation due to mental confusion, etc."

Source: Located at the bottom of image.




These indicators point towards the clouding of consciousness whereby an inflammation of the brain due to certain underlying causes prohibits us from enjoying the benefits of a fully-functional brain. If these causes are ascertained then the affects of brain fog are reversible. The most important and also the most common causes of brain fog can be enumerated as the following:


1. A lot of women find it difficult to remember things or process information swiftly during pregnancy. Carrying and nurturing a baby changes the body in a lot of ways and certain chemicals, hormones, etc released during this period to nourish the baby may bring on problems associated with memory.

2. Poor diet is a major reason affecting the brain and there are certain food elements that are not brain-healthy and we should be aware of these. [See my article on Malnutrition here and what it can do to the body: http://www.emilysstomach.com/2013/06/information-about-malnutrition.html]

3. Eating for a healthy functioning brain is simple and should principally consist in avoiding excess sugar and extra calories. Also, half of your daily food intake should ideally include fruits and vegetables. Nutritional deficiencies such as, Vitamin B12 deficiency lower brain functioning ability. [See my article on Vitamin Deficiencies and what they can do here: http://www.emilysstomach.com/2013/06/the-impact-of-vitamin-deficiencies.html]

4. Neurological and vascular problems such as caused by diseases like, Multiple Sclerosis.

5. Medication induced after-effects and side-effects such as cancer treatment related or anti-cholinergic drugs, etc.

6. Autoimmune, infectious, psychiatric illnesses also debilitate brain performance.

7. Lifestyle factors including sleep disorders, alcohol abuse, depression, etc."

Source: Imgur





How Do You Cope With Brain Fog?

Like I said before, I carry around a GP Journal I write things in, I also have a smaller notepad to write things down, and I use Google Calendar. Everyone is different, so you will have to find a method that works for you. I will try to list as many ideas as I can to help.

Molly's Fund has wonderful ideas below on how to cope with Brain Fog.

Source: http://www.mollysfund.org

Edorium Journal suggests doing these things to cope with Brain Fog,

"Now that the causes are known, actionable steps to combat brain fog can be clearly undertaken. In case of diseases, symptomatic treatments and other alternative steps to naturally prevent the progression of disease can assist in preventing brain fog. Also, an overall strategy for a healthy brain should leverage diet, exercise, food and supplements together. There are a number of things that can be done to improve brain power even socialization helps in sharpening the intellect.

Although at times people experiencing brain fog are too depressed and poorly motivated to initiate changes or take up improvement steps. In such cases, first comes a proper sleep. Proper and plenty of sleep gives the brain time to clean up residual debris of the thinking day, consolidate the memories of the day and create new brain cells to replace the ones lost during the day. Thus, boosting cognitive function and performance, brain hormonal balance and resulting in a rested person. It’s not just a proverb when they say, you should sleep on it.

Lastly, exercise to release endorphins and eliminate the free radicals, and meditate to relieve stress. These gems should help you banish brain fog effectively."

"The Mighty," suggests seventeen phone applications that can help you with Brain Fog here: https://themighty.com/2017/08/apps-brain-fog-organization/.

One of my friends wrote an article in "The Mighty" regarding brain fog, which you can find here: https://themighty.com/2019/05/what-brain-fog-is-like/?fbclid=IwAR1hMd8mDYPscpINaUbDXsAYHO_qlVT_rN_18WdnF56LLILPNHB0Ui6RJfc


Here are some natural treatments regarding Brain Fog,

The source and for more natural treatments on how to help Brain Fog, can be found here: https://draxe.com/brain-fog/.



And finally, if you have an invisible illness, some of these treatments for Brain Fog might be similar to the ones above but I wanted to share it anyway. This is from "Fibromyalgia News Today" and they recommend this: https://fibromyalgianewstoday.com/2017/05/25/9-ways-manage-brain-fog/.

Source: Imgur





In Conclusion:


I know that with an invisible illness, like Gastroparesis, it's really hard for us to eat as some of these helpful hints suggest. I would recommend talking with your doctor about Brain Fog, because we are all different. What works for someone else may not work for me. I have to come up with a mixture of suggestions that might work for me, personally. I usually write out questions for the doctor before I go, so I don't forget anything. I make notes as he talks to me as well. Also, I put a magnetic shopping list on the fridge so that my household can write stuff down as we use it, instead of making a list from scratch when we need to go to the store. That helps me so much and takes the pressure off of any of us if we did it as a mass list, because we would all forget things.

I hope this article will help you understand Brain Fog a bit better. It's frustrating to go through and hard to deal with, but it is something that can be dealt with. If you battle Brain Fog, just know that you are NOT alone. Just stay strong and keep your chin up. I will try to update this article as I learn more, so that you can keep updated on new treatments, symptoms, or any changes.