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Wednesday, January 18, 2017

Mental Health and Gastroparesis: Weight Gain & Anxiety

Chronic illness can be hard on anyone, especially when it's invisible. And, it's not just chronic illness or invisible illness, it's mental illness as well. It's hard to convince people that you're sick when you look fine on the outside but inside is a different story. When people doubt you or tell you that your illness is all in your head, you start doubting yourself. You get depressed and anxious because you are scared to tell anyone about what is really going on with you. You start cutting yourself off from your friends, your family. You isolate yourself because you'd rather be alone than deal with the fallout of someone not believing you or your illness. People don't understand what they can't see. A family member, whom I'm close to, just recently told me I have a mental illness, my gastroparesis was in my head, and that I was a drug addict for taking medication prescribed to me by my physician. When people say hurtful things like that to you, it takes its toll on your psyche. You get depressed and you feel like you have no one to turn to who really understands what you're going through.






I want to also say that the mental healthcare in this country is sorely lacking. It's gotten better from the asylums that were around at the turn of last century, but not by much. I've been in mental hospitals visiting people and they terrify me. They do not receive the adequate care that they really need. It bothers me how these people are neglected and not helped like they should be. It almost feels to me like they're locked in a room and forgotten because they are an embarrassment to society. We can do better. No one should be judged by their mental illness, period.






Anyway, I have a few stories to share from friends of mine who have dealt with similar things, due to their invisible chronic illnesses that I want to share. They were kind enough to share their stories with me so I will post them below.

"My journey living with Gastroparesis & DTP
By: Sarah (and copyrighted but I have special permission to use it)


Until now, I've had the heart but not the drive. The pain to turn into production, but not the passion as motivation... That all changed for me the night a friend wanted to be a lantern to instill light to my candle. I felt ashamed by what GP has taken, afraid of offending to explain its torture on my self worth & the emotional pain has held me back from being open with fellow sufferers due the the somewhat negative aspect of this disease has had on my life over the last couple of years.

MY STORY SO FAR PART 1

Nevertheless, I now am sharing with you my journey into unknown territory in the hope it may lessen the same lonely isolation for others, that I once felt. I had always been a nervous eater, sporadic appetite & bowels that were sensitive to upheavals & stress... I always thought everyone was the same. It began with tests for motility, barium swallow & X-rays.... I'd never heard of motility disorders causing conditions that made eating so painful, I had always believed I had IBS or colitis of my bowel, nevertheless here I found myself in consult with surgeons who wanted to place a PEG & I wasn't ready. I never went back for another consult, I was afraid & I never considered that although I had forced food down, that the reason it rarely gave me energy was because it wasn't being digested, these idea's just weren't my issue, so I thought. I had an obstruction that landed me in hospital as a child, it was a volvulus (twisted bowel) apparently from stress, but that was before I was diagnosed with the genetic connective tissue disorder called Vascular Ehlers Danlos Syndrome (https://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome), as an adult 20+ years later...

It is Spring.... I have realized that although I'm aware of issues with my digestion increasing recently, I have no explanation for the weight loss since weeks before that would suffice my doctors enough to run more tests & neither do I want anymore days in labs at the local hospital. I'm tired, emotionally drained & yet I feel walking is my only hope to ease the discomfort & pain after eating my boiled egg, so I set off walking. I had not long lost a friend, a teenage mentor from complications to diabetes, causing him to no longer be able to attain adequate nutrition, he always had encouraged me to keep eating. Alex was a brilliant youth worker to me in an orphanage & I felt my emotions needed clearing after this tragic loss. I walked miles, I turned a corner as pain surged up my neck through my shoulders into my jaw from my chest, I stopped... took out my nitro spray & prayed it would give relief, the heart thumped harder the pain slowly subsided but the threat loomed & all the while I knew my nutrition was missing something, something vital for my heart to react this way. I managed to get home after stopping in at a shop for a drink of water, but later that night I knew I would need an ambulance.

The egg I had eaten earlier wasn't enough even though my stomach was distended & still felt full, I knew Something was terribly wrong. I dialed 000 & the ambulance came sirens blaring. I was whisked off to hospital where my bloods revealed via a PICC line that my potassium was dangerously low, possibly from vomiting, but more from lack of food. My stomach was really bad the week before, so I had hardly been eating...

MY STORY SO FAR PART 2

The next morning my doctors consulted with me, my poor intake of food & lack of potassium was affecting my heart rhythm in a life threatening way & they wanted to find out why my stomach wasn't emptying properly. My GES score was at 197 mins, this was done with cupric acid that Ai ate mixed into eggs & toast, then recorded by exhalations into 1/2 hourly bags, meaning I had severe delayed emptying time. I didn't think this was a major issue, I thought it was more an issue that I could only eat certain foods without excruciating pain & nausea.

I was admitted into CCU where further tests revealed Long QT Syndrome, Gastroparesis/Digestive Tract Paralysis & Dysautonomia (https://en.wikipedia.org/wiki/Dysautonomia). I was scheduled for a lower NG tube placement & feeds were commenced. It was hard, really hard accepting that due to my stomach issues, I was no longer able to rely on my stomach for my nutritional requirements. My kidneys did not store normal levels of potassium & in my case this was deadly. For weeks I was tube fed, months went by... those months became a year & 1/2, then two years.

Before it was decided best I had my tubes placed in the duodenal jejunal junction for best possible absorption. In the last few months leading up to now, my specialist told me this Christmas just gone he wanted me to give my system one last chance to gain some tone, he explained that when a muscle isn't used for any length of time it atrophies or wastes & the only way to retrain those muscles is to use them. An even harder exercise for someone with EDS. As I had already had to retrain my swallowing to ease eso-tracheomalacia.

I left with my fiancé after becoming teary, resigned to give my stomach & intestines one last chance to gain back some control I would only use the referral for the tube replacement if it became too much. Not wanting to give up over Christmas & New Year with family, each day I pushed myself to keep trying, all the while praying it would work & give back some muscle strength & better motility... I'm stubborn, I know it to be true & I never want to give up especially when I'm told if I do, then that is it. But for me to accept that maybe this was the best I would get my stomach, I had to hit rock bottom so to speak. In the time over Christmas & New Year the pain & discomfort has been so extreme that I have had to revisit the possibility of needing surgical intervention for my nutrition. Things have been exacerbated by a mass about the size of a clenched fist becoming more exacerbated by trying to eat & digest food. I have now two herniations one epigastric & the other umbilical & mow, this "mass" to yet be identified... this is my story so far....


MY STORY SO FAR PART 3
I lay here now after writing this, there may be gaps I hope those reading can understand, they are not intentional but the life of someone with this condition is a constant battle not to allow pain & discomfort unsettle their resolve to fight through. Have I got the strength to fight it & if so for how much longer? I'm not sure, but there is one thing for certain I won't go down easy, I'll give it all I have, if that brings legacy to all who have gained their wings from this dis-ease then so be it! This is for all who know the life we live & struggle forward anyway!& my darling Fiancé of whom I wouldn't still be here without."





My friend Shannon was brave enough to share her story with me:

"I was first diagnosed with PTSD bipolar depression when I was 11 years old after being brutally raped I was sent to a mental hospital and was there for 3 weeks while they tried to get my medication right and they felt that they had the right medications so they discharge me also at that time my mother left me with my grandma and took off I haven't seen her in 23 years my grandma is my supporter my rock my caretaker when I was little I got pregnant at the age of 14 had my daughter when I was 15 and I don't regret it at all my grandma helped me raise her so I would do it right she'll be 27 this year and she has A4 year old daughter my little granddaughter who I love so much and sometimes because of my illness and my depression I sometimes say that I would kill myself if I didn't have my granddaughter this disease has taken away so much I was a nurse for 12 years did medical research so I gave people experimental medication I traveled the country I'm learning about new studies and research and I even went out of the country to Canada and Dubai which was amazing in Canada we stayed in a castle I can't remember the name of it it was something French like something France it was amazing and we were there for 4 days I went to Denver San Francisco Dallas New Mexico twice it was amazing it was I was on top of the world I was making a very good amount of money. But then suddenly in 2008 I started vomiting and I couldn't stop my son was twelve at the time and he had to call an ambulance and he was scared he didn't know what was going on and luckily his dad was closed so his dad came and picked him up but I stayed in the hospital for 3 days with an NG tube in my nose and they couldn't figure it out so they told me to go see a GI which I went and saw dr. Lee Mitchell he's a blessing and he said he wanted to run tests on me he knew right away when I told him my symptoms what was going on he knew exactly what tests to run.

so I had the gastric emptying study twice to confirm definitely that I had gastroparesis he put me on Reglan Zofran, Protonix, Phenergan and that's what we were going to hopefully manage it well after about a hundred admissions to the hospital he told me that I was in end-stage gastroparesis and the only thing that was going to help me with the gastric pacemaker I had the pacemaker put in March 2nd 2014 and three Fridays ago I got so sick I refuse to go to the hospital because the ER doctors don't know anything about gastroparesis they don't know how to treat it they wouldn't treat my pain because they think I'm a drug seeker and one time I went and the doctor they drew my blood and nobody came in to give me my results so I went looking for the doctor he came in and told me that my blood hemolyzed so he pulled the number out of his ass and told me my potassium level was 7 I told him how can you give me a number when my blood hemolyze and it's no good so you don't know what my potassium levels are you don't know what any of my blood work is so when I called him out he felt bad and he's like well what if the VA give you and I told him zofran and Reglan I said and she didn't treat my pain.

I don't know if he felt stupid or what but not less than two minutes after he left the room I was given Dilaudid and Phenergan it was amazing it would I was on top of the world I was making a very good amount of money. But then suddenly in 2000 and a tie started vomiting and I couldn't stop my son was 12 at the time and he had to call and ambulance and he was scared he didn't know what was going on and luckily his dad was closed so his dad came and picked him up but I stayed in the hospital for 3 days with an energy to ban my nose and they couldn't figure it out so they told me to go see UGI which I went and saw Dr Lee Mitchell he's the blessing and he said he wanted to run tests on me he knew right away when I told him my symptoms what was going on he knew exactly what tester run so I had the gastric tempting study twice to confirm definitely that I had gastro Brisas he put me on Redlands zofran, protonix, Phenergan and that's what we were going to hopefully manage it well after about a hundred admissions to the hospital he told me that I was in in stage gastro prices and the only thing that was going to help me was the gastric pacemaker I had the pacemaker put in March 2nd of 2014 and 14 and three Fridays ago I got so sick I refuse to go to the hospital because the ER doctors don't know anything about gastro Brisas they don't know how to treat it they wouldn't treat my pain because they think I'm a drug seeker and one time I went and the doctor they drew my blood and nobody came in to get me my results so I went looking for the doctor he came in and told me that my blood hemelyzed[sic] so he pulled a number at of his hat and told me my potassium level was 7 I told him how can you give me a number when my blood hemelyzed[sic] and its no good so you don't know what my potassium levels are you don't know what.

For some reason it's not letting me go any further. But anyway they didn't know what my levels were so he just threw out a number so I filed a formal complaint against them but I saw them I knew surgeon yesterday and he took my battery and it is completely dead which would explain why I went through a violent violent flare 3 weeks ago butt I have seen a psychiatrist after I was diagnosed and he's helping me with the correct mental medications that I need because of my disability paperwork and through my history I already know I was diagnosed with PTSD bipolar depression anxiety OCD and person with borderline personality disorder I get so sad and I cry all day long because this is taking away my career my family my children well one of my children says I'm a hypochondriac but we don't talk that much but I don't know how I can be a hypochondriac when they know I have an incurable condition which that makes me sit and cry and cry I am so anxious that I am on to anxiety medications I don't sleep and I'm on two different sleeping medications when I get sick my husband yells at me I think because he's scared but because he's over it because he's gone to the ER with me over a hundred times he's visited me over a hundred times he's traveled an hour and a half away to see me at two different hospitals this condition I'd rather have cancer then have this condition if I didn't have my granddaughter I'm mentally unstable I would kill myself."



Cheryl's Story:






Shannon's Story:

[sic]"Hi Emily it's Shannon L. I was first diagnosed with PTSD bipolar depression when I was 11 years old after being brutally raped I was sent to a mental hospital and was there for 3 weeks while they tried to get my medication right and they felt that they had the right medications so they discharge me also at that time my mother left me with my grandma and took off I haven't seen her in 23 years my grandma is my supporter my rock my caretaker when I was little I got pregnant at the age of 14 had my daughter when I was 15 and I don't regret it at all my grandma helped me raise her so I would do it right she'll be 27 this year and she has A4 year old daughter my little granddaughter who I love so much and sometimes because of my illness and my depression I sometimes say that I would kill myself if I didn't have my granddaughter this disease has taken away so much I was a nurse for 12 years did medical research so I gave people experimental medication I traveled the country I'm learning about new studies and research and I even went out of the country to Canada and Dubai which was amazing in Canada we stayed in a castle I can't remember the name of it it was something French like something france it was amazing and we were there for 4 days I went to Denver San Francisco Dallas New Mexico twice it was amazing it was I was on top of the world I was making a very good amount of money. But then suddenly in 2008 I started vomiting and I couldn't stop my son was twelve at the time and he had to call an ambulance and he was scared he didn't know what was going on and luckily his dad was closed so his dad came and picked him up but I stayed in the hospital for 3 days with an NG tube in my nose and they couldn't figure it out so they told me to go see a GI which I went and saw dr. Lee Mitchell he's a blessing and he said he wanted to run tests on me he knew right away when I told him my symptoms what was going on he knew exactly what tests to run so I had the gastric emptying study twice to confirm definitely that I had gastroparesis he put me on Reglan Zofran Protonix finagrin and that's what we were going to hopefully manage it well after about a hundred admissions to the hospital he told me that I was in end-stage gastroparesis and the only thing that was going to help me with the gastric pacemaker I had the pacemaker put in March 2nd 2014 and three Fridays ago I got so sick I refuse to go to the hospital because the ER doctors don't know anything about gastroparesis they don't know how to treat it they wouldn't treat my pain because they think I'm a drug seeker and one time I went and the doctor they drew my blood and nobody came in to give me my results so I went looking for the doctor he came in and told me that my blood hemolyzed so he pulled the number out of his ass and told me my potassium level was 7 I told him how can you give me a number when my blood hemolyze and it's no good so you don't know what my potassium levels are you don't know what any of my blood work is so when I called him out he felt bad and he's like well what if the VA give you and I told him zofran and Reglan I said and she didn't treat my pain I don't know if he felt stupid or what but not less than two minutes after he left the room I was given Dilaudid and finagrin it was amazing it would I was on top of the world I was making a very good amount of money. But then suddenly in 2000 and a tie started vomiting and I couldn't stop my son was 12 at the time and he had to call and ambulance and he was scared he didn't know what was going on and luckily his dad was closed so his dad came and picked him up but I stayed in the hospital for 3 days with an energy to ban my nose and they couldn't figure it out so they told me to go see UGI which I went and saw Dr Lee Mitchell he's the blessing and he said he wanted to run tests on me he knew right away when I told him my symptoms what was going on he knew exactly what tester run so I had the gastric tempting study twice to confirm definitely that I had gastro Brisas he put me on Redlands zofran protonix Finnegan and that's what we were going to hopefully manage it well after about a hundred admissions to the hospital he told me that I was in in stage gastro prices and the only thing that was going to help me was the gastric pacemaker I had the pacemaker put in March 2nd of 2014 and 14 and three Fridays ago I got so sick I refuse to go to the hospital because the ER doctors don't know anything about gastro Brisas they don't know how to treat it they wouldn't treat my pain because they think I'm a drug seeker and one time I went and the doctor they drew my blood and nobody came in to get me my results so I went looking for the doctor he came in and told me that my blood hemelyzed so he pulled a.number at of his ass and told me my potassium level was 7 I told him how can you give me a number when my blood hemelyze d and its no good so you don't know what my potassium levels are you don't know what[sic]

[sic]For some reason it's not letting me go any further. But anyway they didn't know what my levels were so he just threw out a number so I filed a formal complaint against them but I saw them I knew surgeon yesterday and he took my battery and it is completely dead which would explain why I went through a violent violent flare 3 weeks ago butt I have seen a psychiatrist after I was diagnosed and he's helping me with the correct mental medications that I need because of my disability paperwork and through my history I already know I was diagnosed with PTSD bipolar depression anxiety OCD and person with borderline personality disorder I get so sad and I cry all day long because this is taking away my career my family my children well one of my children says I'm a hypochondriac but we don't talk that much but I don't know how I can be a hypochondriac when they know I have an incurable condition which that makes me sit and cry and cry I am so anxious that I am on to anxiety medications I don't sleep and I'm on two different sleeping medications when I get sick my husband yells at me I think because he's scared but because he's over it because he's gone to the ER with me over a hundred times he's visited me over a hundred times he's traveled an hour and a half away to see me at two different hospitals this condition I'd rather have cancer then have this condition if I didn't have my granddaughter I'm mentally unstable I would kill myself
I am so sorry that happened to you but I want to commend you for being brave enough to share your story with me. It will help other people. ❤[sic]

[sick]Thank you Emily I follow you and your notifications every day and I'm sorry that you have this condition too I'm sorry I'll everybody on the GP Pages have this condition Please share my story if you want to I don't have any friends I lost all my friends when I got sick I don't have anybody to talk to I sit around the house I clean what I can because I also have had one back surgery and 3 neck surgeries so I suffer from chronic pain so I can only you know clean so much I have to sit down I clean something but my house is super clean I don't know what to do so I just sit here and then I watch TV and that's depressing sometimes and I need to stop watching the news but I have you know all the news people on my Facebook I mean I do want to know what's going around in the world but I don't like this sad stuff and what's making me really really sad is that Trump is going to be our president who makes fun of disabled people who abuses women sexually and me being a rape victim Survivor that's a slap in my face I don't know if I'll ever get over my rape and that was when I was 11 so 30 years ago I don't have a therapist to talk to because I can't afford it but in my husband he keeps quitting jobs like crazy it's like he doesn't want to work but he has an amazing trade he's an AC man he can make a lot of money and he quit his job just recently and he was out of work for 2 months but he just started a new job this week so let's see how long he keeps that so I'm constantly worrying about money about our bills about me being able to get to the doctor on my surgery I have to pay my copay which he promised that we would have so this is my depressing life I have no one[sic]"
**NOTE: THIS IS NOT EDITED FROM THE ORIGINAL I RECEIVED.**


This is Christy's Story:

"I've been battling mental illness many years before I was ever diagnosed with any GI issues. When I was a teenager around 15/16, I was diagnosed with depression and was started on antidepressants. My depression was so incredibly bad I would remain in the basement watching movies and have no ability to do anything really. Going to school was challenging and I'd often end up calling my mom to come pick me up.

When I was 24, I was diagnosed with gastroparesis, eosinophilic esophagitis and IBS. I was experiencing major issues eating, digesting, and maintaining proper nutrition. At 26, I was diagnosed with Bipolar II disorder, which more accurately described my incredible depression that I was experiencing.

When I was diagnosed with GP, I experienced mourning for my former self that could eat normally. I realized that I would never be able to be "normal" again and it was very sad and caused my depression to worsen for a time. Eventually I adjusted and learned to accept my new self.

When I started seeing a new psychiatrist, the one who diagnosed me with BP II, I started adding several medications to my regimen. I also found that I was having issues breaking down and absorbing tablets. I started explaining this to my Dr, who tried working with me by prescribing capsules and liquids, but she made it seem like it was too much work as well as not necessary.

I'm 28 now and have experienced many different Drs reactions to my gastroparesis and BP II. It can be frustrating because they do not always understand the issues that come with the two co-existing, medication absorption, pills being choked on or stuck in my throat due to poor esophageal motility, as well as high probability of my pooping out whole tablets.

I'm lucky that today I have a wonderful NP that is handling my psychiatric end of things. She understands more than any other psych dr has, and even more importantly, listens to what I have to say about both my psych and medical problems. This is the biggest issue right now in the medical community, Drs don't listen to those who are chronically ill and do not take their experience with their own diseases and syndromes when making medical treatment plans. Just because we do not have MD behind our name, sure as hell doesn't mean that we don't know our bodies, what we generally need and especially doesn't mean we should be ignored.

Having mental health issues is tough but with co-existing GI problems, it creates a whole new world of challenges that most Drs aren't willing to look at overall, instead of individually. This leads to wrong treatments, under diagnoses, and bad medical care in general."





Tuesday, December 20, 2016

Please SHARE and Help River, My Nephew, Who Has a Rare Form of Brain Cancer

This is my two year old nephew River.


My two year old nephew was diagnosed with a rare form of brain cancer (tumor). He's only a baby. It would mean the world to my family if you could add him to your prayer lists and/or donate to his cause. I'm trying to buy my step father a plane ticket out there to see him, because he can't afford a ticket this Christmas. I want to be able to surprise him with one so that he can spend some time with his grandson. If you could share this link, I'd appreciate it. I just want to do what I can for River. He's a special boy who doesn't deserve to go through this hell. Please help me help a Christmas miracle happen. <3 I am raising money to help my step father get up there to spend time with River. Any leftover money will be donated to his medical expenses, because there are a lot of them, and he's on medicaid. I never ask for anything like this, but this is family and this is important to me. UPDATE: River is back in the hospital with a fever and vomiting. They're going to do a spinal tap.

http://www.gofundme.com/help-step-father-see-nephew

***PLEASE SHARE AND GIVE IF YOU CAN***

#RiverWarriors #RiverWILLBeatCancer

This is the rare form of brain cancer he has been diagnosed with: http://en.m.wikipedia.org/wiki/Atypical_teratoid_rhabdoid_tumor

I plan on doing more research about this particular type of cancer.

According to Wikipedia,

"Atypical teratoid rhabdoid tumor (AT/RT) is a rare tumor usually diagnosed in childhood. Although usually a brain tumor, AT/RT can occur anywhere in the central nervous system (CNS) including the spinal cord. About 60% will be in the posterior cranial fossa (particularly the cerebellum). One review estimated 52% posterior fossa, 39% sPNET (supratentorial primitive neuroectodermal tumors), 5% pineal, 2% spinal, and 2% multi-focal.[1]

In the United States, three children per 1,000,000 or around 30 new AT/RT cases are diagnosed each year. AT/RT represents around 3% of pediatric cancers of the CNS.[2] Around 17% of all pediatric cancers involve the CNS; it is the most common childhood solid tumor.[citation needed] The survival rate for CNS tumors is around 60%. Pediatric brain cancer is the second leading cause of childhood death, just after leukemia. Recent trends suggest that the rate of overall CNS tumor diagnosis is increasing by about 2.7% per year. As diagnostic techniques using genetic markers improve and are used more often, the proportion of AT/RT diagnoses is expected to increase."


I have never heard of this type of cancer before but I will be working on this article to learn all I can about it. River has already undergone brain surgery, where they removed the tumor, but the doctors are afraid that they didn't get it all. He starts chemotherapy soon. I just want my stepfather to get a chance to spend some time with him in case the worse happens, or he's too sick to realize my stepfather is there. I never ask you guys for anything but I could use some help with donations. Even if you could just share the gofundme page, I'd appreciate it. Please put River on your prayer lists. His mother is pregnant now, so I'm terrified that all of this stress might make her lose the baby. My step sister is very dear to me and I want to help her as much as I can.

Again the link is: https://www.gofundme.com/help-step-father-see-nephew

Just know that I will be forever grateful and will definitely owe you one because I hate asking for money. However, I can't stand to see a 2 year old suffer and I would take it from him if I could. If you know of any charities or cancer foundations that may be able to help out my family, please list them in the comments. My step sister doesn't have much money and any kind of charity that could help out with medical expenses, traveling expenses, etc. would be welcomed. Thank you for taking the time to read this. It's been weighing on me greatly and the stress has caused my GP to go into overdrive.






Friday, July 15, 2016

Information about The Vagus Nerve

Dedicated to Cheryl, my inspiration for this article.


Image taken from: http://autismcoach.com/blog-info-articles/the-vagus-nerve-core-piece-of-the-autism-puzzle-part-1-what-is-this-and-why-is-it-important

I know I try not to cite too many articles but I wanted to cite this one. It has really great information about the vagus nerve and what it does for your body. I do not know much about the vagus nerve, so I need help with research about it, hence the quoted articles. I'm curious as to if the vagus nerve, if damaged and causes gastroparesis, might cause other issues as well. It's a question I've had on my mind for a long time. I know some of my friends have heart issues and the vagus nerve runs by the heart. I also know that I get what I call, "gp fog" which could be a result of a damaged vagus nerve. So, I wanted to do some research into it and try to answer some of my questions and hopefully, educate and answer some of your questions as well. Maybe the more exposure we bring to complications like this, the doctors might be able to take the information and do something with it - with research or anything that could help us.



"The vagus nerve provides 75% of all parasympathetic outflow. When the brain triggers parasympathetic activation, the vagus nerve carries the messages to the heart (decreasing the heart rate and blood pressure), to the lungs (to constrict the respiratory passageways), to every organ in the digestive system (to increase motility and blood flow to the digestive tract, to promote defecation), to the kidneys and bladder (to promote urination) and to reproductive organs (to aid in sexual arousal).

2. It communicates messages between the gut and the brain. 80% of the vagus nerve’s fibers (4 out of 5 traffic lanes) deliver information from the enteric nervous system (the second brain in the gut) to the brain.

3. It regulates the muscle movement necessary to keep you breathing. Your brain communicates with your diaphragm via the release of the neurotransmitter acetylcholine from the vagus nerve to keep you breathing. If the vagus nerve stops releasing acetylcholine, you will stop breathing.

4. It helps decrease inflammation. About 15 years ago neurosurgeon Kevin Tracey and his colleagues found that a tiny amount of an anti-inflammatory drug in rats’ brains blocked the production of an inflammatory molecule in the liver and spleen. How did the signal get there? The researchers began cutting nerves one at a time to find the ones responsible for transmitting the anti-inflammatory signal from brain to body. “When we cut the vagus nerve, which runs from the brain stem down to the spleen, the effect was gone,” says Tracey, president and CEO of the Feinstein Institute for Medical Research in Manhasset, N.Y. Later they discovered that stimulating undamaged vagus fibers also had anti-inflammatory effects in animals (without the drug), which they attributed to the release of the neurotransmitter acetylcholine by the vagus nerve.


5. It has profound control over heart rate and blood pressure. For example, patients with heart failure, in which the heart fails to pump enough blood through the body, tend to have less active vagus nerves. Currently multiple studies are underway investigating the effects of vagus stimulation on patients with heart failure and atrial fibrillation (where the heart flutters erratically).

6. It helps improve your mood. Research shows that stimulation of the vagus nerve can be an effective treatment for chronic depression that has failed to respond to other treatments. Electrical stimulation of the vagus through a surgically implanted device has already been approved by the U.S. Food and Drug Administration as a therapy for patients who don’t get relief from existing treatments.

7. It is essential in fear management. Remember that “gut instinct” that tells you when something isn’t right? Turns out that the vagus nerve plays a major role in that. The signals from your gut get sent to the brain via the vagus nerve, and the signals from the brain travel back to the gut, forming a feedback loop. What if this loop was interrupted – wondered the researchers in a new Swiss study – would that affect innate anxiety and conditioned fear? Turns out it does. In test animals, the brain was still able to send signals down to the stomach, but the brain couldn’t receive signals coming up from the stomach. The research showed that those rats weren’t that afraid to begin with (lower level of innate fear), but once they became afraid, they had trouble overcoming this fear even when the danger was no longer present (longer retention of learned fear). This shows that healthy functioning of the vagus nerve helps us bounce back from stressful situations and overcome fear conditioning.

8. It plays a role in learning and memory. The same Swiss study (above) found that the rats without gut instincts transmitting to the brain via the vagus nerve required significantly longer to re-associate previously “dangerous” environment with the new, “safe” and neutral situation. This shows that the vagus nerve facilitates learning and re-wiring, so to speak. “These new findings about the vagus nerve offer exciting possibility for the treatment of post-traumatic stress disorder (PTSD). Stimulation of the vagus nerve might be able to speed up the process by which people with PTSD can learn to reassociate a non-threatening stimuli which triggers anxiety with a neutral and non-traumatic experience”(1). It can also help with healing sexual stress and trauma.

9. It can help relieve cluster headaches. The company electroCore, based in Basking Ridge, N.J., manufactures a small, handheld device that can stimulate the vagus when placed on the throat. The company initially tested the devices to reduce asthma symptoms — relying on the nerve’s anti-inflammatory action. But during testing, patients reported that their headaches were disappearing, says J.P. Errico, CEO of electroCore. Now, the company is investigating the use of an electroCore device to treat chronic cluster headaches." This information was given by: https://www.yogauonline.com/yogau-wellness-blog/vital-vagus-what-vagus-nerve-and-what-does-it-do



The gastric branches (rami gastrici) supply the stomach. The right vagus forms the posterior gastric plexus and the left forms the anterior gastric plexus. The branches lie on the posteroinferior and the anterosuperior surfaces, respectively.

The celiac branches (rami celiaci) are derived mainly from the right vagus nerve. They join the celiac plexus and supply the pancreas, spleen, kidneys, adrenals, and intestine.

The hepatic branches originate from the left vagus. They join the hepatic plexus and through it are distributed to the liver.

Images from: http://autismcoach.com/blog-info-articles/the-vagus-nerve-core-piece-of-the-autism-puzzle-part-1-what-is-this-and-why-is-it-important/


"What happens in the vagus nerve, it turns out, doesn’t stay in the vagus nerve. The longest of the cranial nerves, the vagus nerve is so named because it “wanders” like a vagabond, sending out fibers from your brainstem to your visceral organs. The vagus nerve is literally the captain of your inner nerve center—the parasympathetic nervous system, to be specific. And like a good captain, it does a great job of overseeing a vast range of crucial functions, communicating nerve impulses to every organ in your body. New research has revealed that it may also be the missing link to treating chronic inflammation, and the beginning of an exciting new field of treatment that leaves medications behind. Here are nine facts about this powerful nerve bundle.

1. THE VAGUS NERVE PREVENTS INFLAMMATION.
With a vast network of fibers stationed like spies around all your organs, when the vagus nerve gets wind of the hallmarks of inflammation—cytokines or the inflammatory substance tumor necrosis factor (TNF)—it alerts the brain and elicits anti-inflammatory neurotransmitters via the cholinergic anti-inflammatory pathway. A certain amount of inflammation after injury or illness is normal. But an overabundance is linked to many diseases and conditions, from sepsis to the autoimmune condition rheumatoid arthritis.


2. IT HELPS YOU MAKE MEMORIES.
A University of Virginia study showed success in strengthening memory in rats by stimulating the vagus nerve, which releases the neurotransmitter norepinephrine into the amygdala, consolidating memories. Related studies were done on humans, opening promising treatments for conditions like Alzheimer’s disease.


3. IT HELPS YOU BREATHE.
The neurotransmitter acetylcholine, elicited by the vagus nerve, literally gives you the breath of life by telling your lungs to breathe. It’s one of the reasons that botox—often used cosmetically—can be potentially dangerous, because it interrupts your acetylcholine production. You can, however, also manually stimulate your vagus nerve by doing abdominal breathing or holding your breath for four to eight counts.


4. IT’S INTIMATELY INVOLVED WITH YOUR HEART.
The vagus nerve is responsible for controlling the heart rate via electrical impulses to the sinoatrial node of the heart, where acetylcholine release slows the pulse. The way doctors determine the “tone” or “strength” of your vagus nerve (and your cardiac health) is by measuring the time between your individual heart beats, and then plotting this on a chart over time. This is your 'heart rate variability.'


5. IT INITIATES YOUR BODY’S RELAXATION RESPONSE.
When your ever-vigilant sympathetic nervous system revs up the fight or flight responses—pouring the stress hormone cortisol and adrenaline into your body—the vagus nerve tells your body to chill out by releasing acetylcholine. Its tendrils extend to many organs, acting like fiberoptic cables that send instructions to release enzymes and proteins like prolactin, vasopressin, and oxytocin, which calm you down. People with a stronger vagus response may be more likely to recover more quickly after stress, injury, or illness.


6. IT TRANSLATES BETWEEN YOUR GUT AND YOUR BRAIN.
Your gut uses the vagus nerve like a walkie-talkie to tell your brain how you’re feeling via electric impulses called “action potentials". Your gut feelings are very real.


7. OVERSTIMULATION OF THE VAGUS NERVE IS THE MOST COMMON CAUSE OF FAINTING.
If you tremble or get queasy at the sight of blood or while getting a flu shot, you’re not weak; you’re experiencing “vagal syncope.” Your body, responding to stress, overstimulates the vagus nerve, causing your blood pressure and heart rate to drop. During extreme syncope, blood flow is restricted to your brain, and you lose consciousness. But most of the time you just have to sit or lie down for the symptoms to subside.


8. ELECTRIC STIMULATION OF THE VAGUS NERVE REDUCES INFLAMMATION AND MAY INHIBIT IT ALTOGETHER.
Truly breaking new medical ground, neurosurgeon Kevin Tracey was the first to prove that stimulating the vagus nerve can significantly reduce inflammation. Results on rats were so successful, he reproduced the experiment in humans with stunning results. The creation of implants to stimulate the vagus nerve via electronic implants showed a drastic reduction, and even remission, in rheumatoid arthritis—which has no known cure and is often treated with the toxic cancer drug methotraxate—hemorrhagic shock, and other equally serious inflammatory syndromes.


9. VAGUS NERVE STIMULATION HAS CREATED A NEW FIELD OF MEDICINE.
Spurred on by the success of vagal nerve stimulation to treat inflammation and epilepsy, a burgeoning field of medical study, known as “bioelectronics,” may be the future of medicine. Using implants that deliver electric impulses to various body parts, scientists and doctors hope to treat illness with fewer medications and fewer side effects."
Information from: http://mentalfloss.com/article/65710/9-nervy-facts-about-vagus-nerve


I'm sorry for all of the block quotes. I really don't know much about the vagus nerve, so I wanted to read up on it. I feel like it's something I should be aware of since I have Gastroparesis and a damaged vagus nerve and I wanted to spread the knowledge to you. Feel free to do more research on the matter and if I have left out any important information, let me know. I did not know that the vagus nerve can control your "gut feeling." I'm still learning about gastroparesis and what it is doing to my body. I know a lot of my friends have a hard time remembering things, myself included, and a lot of my friends have heart issues. I wonder if it's all related to the damaged vagus nerve by the stomach. I would love a doctor to do research and confirm what a damaged vagus nerve can do to the whole body, and not just the stomach.

The Mayo Clinic offers treatment for a stimulation of the vagus nerve. Their website says,

"Vagus nerve stimulation is a procedure that involves implantation of a device that stimulates the vagus nerve with electrical impulses.

There's one vagus nerve on each side of your body, running from your brainstem through your neck to your chest and abdomen.

Vagus nerve stimulation is most often used to treat epilepsy when other treatments haven't worked. Vagus nerve stimulation is also a treatment for hard-to-treat depression that hasn't responded to typical therapies.

Researchers are currently studying vagus nerve stimulation as a potential treatment for a variety of conditions, including multiple sclerosis, headache, pain and Alzheimer's disease.

In conventional vagus nerve stimulation, a device is surgically implanted under the skin on your chest, and a wire is threaded under your skin connecting the device to the left vagus nerve. The right vagus nerve is not used because it carries fibers that supply nerves to the heart.

When activated, the device sends electrical signals along the vagus nerve to your brainstem, which then sends signals to certain areas in your brain.

New, noninvasive vagus nerve stimulation devices, which do not require surgical implantation, have been approved for use in Europe to treat epilepsy, depression and pain but have not yet been approved for use in the U.S.

An implantable device that stimulates the right vagus nerve is also under study for the treatment of heart failure."
Source: http://www.mayoclinic.org/tests-procedures/vagus-nerve-stimulation/home/ovc-20167755

I hope one day, there will be some kind of treatment to help those with gastroparesis that includes the vagus nerve. I'm optimistic and I'm hoping there will be research into the matter. If we could repair the vagus nerve in some way, it would save so many lives, or even find treatment to get it to work properly. I'm not going to lose hope.


Source: http://thehigherlearning.com/wp-content/uploads/2015/05/vagus-nerve.jpg



There is an article I wrote on the Vagus Nerve Stimulator, which may help your stomach muscles contract and help with gastric emptying. It can be found here: http://www.emilysstomach.com/2017/06/the-vagus-nerve-stimulator.html

Additionally, I also wrote an article entitled, "The Brain in Your Gut" which the deals with the Vagus Nerve and Serotonin being made in your stomach. It can be found here: http://www.emilysstomach.com/2017/09/the-brain-in-your-gut.html



Source: https://feedyeti.com/hashtag.php?q=Gastroparesis




According to Psychology Spot,

"Vagus nerve and anxiety: Everything You Need to Know


The vagus nerve is the tenth of twelve pairs of cranial nerves and is the longest in the body. In fact, the word vagus means 'vagabond' in Latin, and perfectly illustrates the path of this nerve extending through various organs of the body.

The vagus nerve is born in the cranial box, exactly in the spinal cord, and falls into the neck developing on two branches and reaching the abdomen passing through the various organs along the path.

The vagus nerve intervenes in the sensitivity of the respiratory mucous membranes and transmits the rhythm, strength and frequency of breathing. It affects the pharynx, the larynx, the esophagus, the trachea and the bronchi, as well as administering nerve fibers to the heart, stomach, pancreas and liver. But it also carries out the inverse mission; that is, it receives signals from the internal organs and sends them to the brain to be processed.

Although perhaps the most interesting thing is the relationship between the vagus nerve and anxiety as it also transmits signals of nervousness or calm, anger or relaxation.


To understand the link between the vagus nerve and anxiety we need to understand that the nervous system is made up of two 'opposite' systems that constantly send information to the brain.

The sympathetic nervous system prepares us for action, so it mainly feeds hormones like adrenaline and cortisol. The parasympathetic nervous system intervenes in rest and relaxation.

In practice, both systems work as accelerator and decelerator. The sympathetic nervous system accelerates and activates us as the parasympathetic nervous system helps us relax and reduce the speed, so it uses neurotransmitters such as acetylcholine, which decreases the heart rate and blood pressure so that the organs work slower.



The functions of the vagus nerve

The vagus nerve controls the parasympathetic system. It intervenes in many functions, from mouth movements to heartbeat, and likewise, when affected ​​it can cause various symptoms. Some of the vagus nerve functions in our body are:

– It helps regulate heartbeat, controls muscle movements and maintains the pace of breathing.

– It maintains the functioning of the digestive tract, allowing the contraction of the stomach and intestine muscles to digest food.

– Facilitates relaxation after a stressful situation or indicates that we are in danger and we do not have to lower the guard.

– Send sensory information to the brain about organ status.



Vagus Nerve and Anxiety

When we are subjected to stressful situations, the sympathetic nervous system is activated. If the tension persists and we cannot turn off the physiological response that triggers it, it won’t pass much time before problems appear. At brain level, this involves the activation of two pathways: the hypothalamus-pituitary-adrenal axis and the brain-intestine axis.

The brain responds to stress and anxiety by increasing the production of hormones (CRFs) that travel from the hypothalamus to the pituitary gland where they induce the release of another hormone (ACTH), which in turn travels through the bloodstream to the adrenal glands to stimulate cortisol and adrenaline induction, which act as immune system suppressors and inflammatory precursors, which is why when we feel stressed and anxious we get ill easily and, ultimately, we can end up suffering from depression, a disorder which has been linked to an inflammatory brain response.

And as if that were not enough, chronic stress and anxiety cause an increase in glutamate in the brain, a neurotransmitter that, when produced in excess, causes migraine, depression and anxiety. In addition, a high level of cortisol reduces the volume of the hippocampus, the part of the brain responsible for the formation of new memories.

The involvement of the vagus nerve will lead to symptoms such as dizziness, gastrointestinal problems, arrhythmias, difficulty in breathing, and disproportionate emotional responses. In fact, as the vagus nerve is unable to activate the relaxation signal, the sympathetic nervous system keeps active, this will cause the person to respond impulsively and suffer from anxiety.

It is also curious that a study developed at the University of Miami found that the vagal tone is transmitted from mother to child. Women suffering from anxiety, depression or experiencing much anger during pregnancy had a lower vagal activity and their children also exhibited low vagal activity and lower levels of dopamine and serotonin.



Three Vagal Stimulation Techniques: How to Take Care of the Vagus Nerve?

The vagal tone is an internal biological process that represents the activity of the vagus nerve. The increase in vagal tone activates the parasympathetic nervous system, which means that we can relax more quickly after a stressful situation and this will have a positive impact on our emotional balance and on health in general.

Exist various vagus nerve stimulation techniques:

1. Exposure to cold

It has been seen that exposure to cold activates the vagus nerve because it stimulates the cholinergic neurons crossing these innervations. In fact, an investigation conducted at the University of Oulu has revealed that regular exposure to cold helps to reduce the fight-flight response that launches the sympathetic nervous system.

It can be enough a cold shower of 30 seconds a day or a cold towel on the face. There are also those who lie down on the belly putting a cube of ice on the nape. Others prefer to drink quickly a glass of cold water.

2. Diaphragmatic breathing

Most people inhale air between 10 and 14 times per minute, which means they have a superficial breathing. The ideal would be to inhale air 6 times per minute. Therefore, another very effective vagal stimulation technique consists in breathing deeply.

The diaphragmatic breathing in particular activates the vagus nerve and the brain interprets it as it is necessary to calm down, even if the nerve has not given that order specifically. The mechanism is the same for which, if you close your eyes and make taps with your fingers on your eyelids, you will perceive short flashes of light because the brain interprets them so.

With diaphragmatic breathing, we make a deeper breathing that brings air into the lower part of the chest, using the diaphragm correctly and promoting relaxation.

3. Meditation, yoga and tai-chi

Meditation can increase the vagal tone. This has been demonstrated by researchers of the Oregon University who have seen that only five days of mindfulness meditation promote positive feelings towards oneself that cause the vagus nerve activation, while modulating the activity of the parasympathetic nervous system, a much better result than conventional relaxation techniques.

Even practices such as yoga and tai-chi are ideal for stimulating the vagus nerve. A study at Boston University has revealed that yoga increases GABA neurotransmitters, which promote the feeling of calm and serenity by helping to combat anxiety and stress. The tai-chi, on the other hand, is able to balance heart rate, which means it stimulates vagal modulation, according to researchers at the National Yang-Ming University School of Medicine.



Sources:
Streeter, C. C. et. Al. (2012) Effects of yoga on the autonomic nervous system, gamma-aminobutyric-acid, and allostasis in epilepsy, depression, and post-traumatic stress disorder. Medical Hypotheses; 78(5): 571-579.
Tang, Y. et. Al. (2009) Central and autonomic nervous system interaction is altered by short-term meditation. PNAS; 106(22): 8865–8870.
Mäkinen, T.M. et. Al. (2008) Autonomic nervous function during whole-body cold exposure before and after cold acclimation. Aviat Space Environ Med; 79(9): 875-882.
Fiel, T. et. Al. (2003) Pregnancy anxiety and comorbid depression and anger: Effects on the fetus and neonate. Depression and Anxiety; 17(3): 140–151.
Wan-an, L. & Cheng-Deng, K (2003) The Effect of Tai Chi Chuan on the Autonomic Nervous Modulation in Older Persons. Med Sci Sports Exerc; 35(12): 1972-1976."





Source: https://www.theodysseyonline.com/vagus-nerve-dysfunction-symptoms

Friday, May 27, 2016

Gastric Endoscopic Myotomy Showing Promise for Gastroparesis

This is an article copied from: http://www.medscape.com/viewarticle/863847#vp_1. I like to go back and read interesting breakthroughs when it comes back to gastroparesis treatment. Also, if you have had this procedure done, please email me your story: emilysstomach[at[gmail.com and I will include your story in this article, and whether it did or didn't work for you to let other GPers know. So far, the only clinic I know that does this procedure is Emory in Atlanta, GA.



Gastric Endoscopic Myotomy Showing Promise for Gastroparesis
By: Caroline Helwick
May 25, 2016

FDA Approves Gastroparesis Test for Any Clinical Setting
Nortriptyline Minimal Benefit in Gastroparesis
Ghrelin Receptor Agonist Improves Diabetic Gastroparesis
RELATED DRUGS & DISEASES
Kidney-Pancreas Transplantation
All nine of the study patients were refractory to conventional treatment — including gastric electrical stimulation in two patients — for at least 6 months, had severe symptoms, had been hospitalized at least twice in the previous 6 months, and had disturbed gastric emptying.







Mean procedural time was 48 minutes. There were no peri- or postoperative complications, and all patients could eat 2 days after surgery and were discharged by day 5.

Clinical efficacy was very high; 85% of the patients had improved significantly after 1 month. One of the failures was a recurrence at 2 months in a diabetic patient with renal insufficiency.

Gastroparesis Cardinal Symptom Index (CGSI) score decreased from 3.5 before the procedure to 0.9 at 1 month (P < .001) and 1.1 at 3 months (P < .001). Improvements were also significant for nausea, vomiting, abdominal pain, gastric fullness, and early satiety at 3 months (P <.001 for all), but not for anorexia. Time to half gastric emptying was significantly better after the procedure than before (133 vs 222 minutes; P < .001). Improved quality of life was reported by 63% of patients. Table. Gastric Emptying Mean Residual Percentage Before G-POEM, % After G-POEM, % P Value At 2 hours 76 40 <.001 At 4 hours 44 19 NS Dr Gonzalez acknowledged that long-term follow-up is needed for these patients, as are prospective studies, which his group has initiated. Dr Khashab said G-POEM can be considered not only for patients with recurrent hospitalizations, but also "for any patient with nausea and vomiting that significantly affects their quality of life, even without hospitalization." Although some patients respond to simple medical therapy, metoclopramide carries a black-box warning for tardive dyskinesia "and is only marginally effective," and antiemetics provide only symptomatic relief, Dr Khashab pointed out. Before attempting G-POEM, endoscopists should be skilled at esophageal POEM, he added. Dr Gonzalez offered a few procedural tips: "Start at the 5 o'clock position from the pylorus, keep checking your direction, and stop at the pyloric arch." Dr John Vargo These results come from small case series, but they show "intriguingly positive results" in terms of symptomatic response and gastric emptying tests, said John Vargo, MD, from the Cleveland Clinic's Digestive Disease and Surgery Institute. "G-POEM is definitely something we have to look at," Dr Vargo Medscape Medical News. "For these patients, pharmacologic treatments are imperfect; medications have many different side effects. We do have another avenue with gastric pacing, but again, this approach is in its infancy." "I'm hopeful G-POEM will help these very sick people who have a very challenged quality of life," he said. "It's good to see these results, and I look forward to longer follow-up and a larger series of patients." Dr Khashab, Dr Gonzalez, and Dr Vargo have disclosed no relevant financial relationships. Digestive Disease Week (DDW) 2016: Abstracts Mo2015 and 715. Presented May 23, 2016.

Thursday, April 14, 2016

Losing A Loved One To a Chronic Illness and Handling Grief

We have all been there. We see a post or get a call, and the floor drops out from under us. We don't know what to do or what to say because we have just been told that one of our loved ones has passed away, without rhyme or reason, due to complications from a chronic illness. How do you handle that? It seems like it goes beyond the regular grieving process because you watched this person suffer and wrestle with a chronic illness for a long time before they passed. You get angry because people make off hand comments that they knew this person was going to die because they were so ill, yet the last time you talked to your loved one, they were fine. So, how do you deal with the news, knowing that you will never get to have another conversation? Knowing what you do about their illness?

With Gastroparesis, it can be a lot more sneaky. I mean, most people seem fine on the outside but are suffering immensely behind the scenes. If you want to know more about how people with Gastroparesis live and what they suffer from, I have great resources in my blog. But this article, this is to honor those fallen GP Warriors, those who have given their lives to fight for a cure for Gastroparesis. We will never forget them and we will keep them alive in our hearts and our memories, and keep them alive in our fight. So, again, how do you deal with the loss? Based on my personal experiences, I'm going to share some things that really help me when I lose a loved one, especially really good friends, to an invisible illness.

I have another article with the stages of grief in it, entitled, "The Grieving Process for a Chronic Illness, and How to Overcome It" that you can find by clicking here: http://www.emilysstomach.com/2014/02/the-grieving-process-for-chronic.html. This will tell you about the stages of grief. I recommend reading it so that you can prepare yourself and to know how grief effects people.

The only logical answer I can give you is that there is no way to get over a loss. You can move past it, but you never truly get over losing a loved one, especially to a chronic illness.

Lean on support groups, with other people who have gone what you are going through, to help you through this difficult time. I recommend that highly, because people are social animals, and it helps to have empathy and people on your side with what you're going through. I started a Facebook Group, Grief Group for GPers, for those who have lost loved ones to Gastroparesis and who want to talk about it. We ask that everything posted in the group, stays in the group, due to family privacy matters. We also have an album of loved ones who have passed that we keep updated, so that we never forget why we are fighting and who we are fighting for, when we fight for things like awareness, research, and a cure for Gastroparesis. The group can be found here: http://www.facebook.com/groups/gpgriefgroup/.

Joining a support group can definitely help, but I also recommend writing. Writing helps me a lot. When I'm able to get out all of my feelings onto a laptop or a piece of paper, I feel purged and a lot better. You can tear up the paper afterwards or delete a word document, if you don't want anyone else to stumble across it but it helps to get your feelings out. I write this blog to help me deal with even having an invisible illness and most days, it helps me keep my sanity. You don't have to start a blog, but keeping a notebook will help. Like I said, you don't have to keep your feelings once you've written them down. You can throw them away, tear them up, do whatever you like to the page(s) that you write. I like to keep mine to reflect back on how I was feeling and how far I've come since that point. I have a journal that I write in and carry around with me, in addition to this blog.

Lean on your friends. I know this seems like a no-brainer, but your friends are there to support you and help you. Invite them over to your house (I don't know about you, but it's hard for me to go out since I suffer from nausea and vomiting a lot due to GP, gastroparesis, but everyone's GP is different) and put on a movie that you all love, play a game, board or video, and talk. It helps having a distraction and your friends will be there for you. You can tell them about your loved one, relive memories, and honor them in your own way. It helps, at times like these, to have friends you can depend on to make you feel better and the interaction will really help, especially if you've been keeping yourself in isolation.



And the last thing that I would recommend, especially if you can't go to the funeral, is to have your own ceremony. I know this sounds weird, but hear me out. You can do something simple and personal, between you and the loved one you lost. I take flowers, they can be hand picked or bought at a store, and I sit in the backyard. I place them at the edge of the yard, and I talk to my loved one that I've lost. I tell them how I feel, and you can do this in your head if you want to, especially if there are people outside. The important thing is to let out any pent up tears and feelings. Talk to the person you lost like they were there with you, next to you. Lay down the flowers and have your own moment. You don't need a funeral to let them know how you feel. I know I have a hard time going places because I vomit quite a lot, and I am always nauseated. Being in a car exacerbates that feeling, because I get motion sick, so I have my own ceremony, in my backyard. I know this sounds odd, but it really helps me. It helps me say goodbye and saying goodbye, in your own way, is very important. It's important that you let go. You can do whatever makes you feel comfortable, this is just my own little ritual I want to share with you to give you an idea of the things you can do. This is just very personal for me, and this is something I've never told anyone. A good friend of mine, whom I lost, once told me that she didn't want to die because of the suffering she would cause to the people left behind. I still think about that and she's been gone for twenty years.

We have lost five people so far, just this month, from complications due to Gastroparesis. It breaks my heart and saddens me...but it also gives me purpose. I want to continue fighting for those people whom we've lost, and I want to do it to keep them alive. One day, we will find a cure. But, for right now, I have high hopes for more awareness and research. I actually met a lady at the dentist who knew all about Gastroparesis, and I didn't have to explain it to her. She had read about it somewhere. It's going to happen. It may be slow, but awareness is taking shape, and hopefully, research and a cure aren't far behind it.

May our loved ones walk among the stars and be proud of us for carrying on and fighting for Gastroparesis.



My friend shared this article with me and I wanted to post it here, because it is amazing and I think it would help with the grief.

According to Funnyshare.com (http://beautythings.info/2017/09/24/when-asked-for-advice-on-how-to-deal-with-grief-this-old-man-gave-the-most-incredible-reply/),



"When Asked for Advice on How to Deal with Grief, This Old Man Gave the Most Incredible Reply.

Someone on reddit wrote the following heartfelt plea online:

'My friend just died. I don’t know what to do.'

Many people responded with words of encouragement, but one response in particular, by an older gentlemen, really stood out from the rest…

Alright, here goes. I’m old. What that means is that I’ve survived (so far) and a lot of people I’ve known and loved did not. I’ve lost friends, best friends, acquaintances, co-workers, grandparents, mom, relatives, teachers, mentors, students, neighbors, and a host of other folks. I have no children, and I can’t imagine the pain it must be to lose a child. But here’s my two cents.

I wish I could say you get used to people dying. I never did. I don’t want to. It tears a hole through me whenever somebody I love dies, no matter the circumstances. But I don’t want it to 'not matter.' I don’t want it to be something that just passes. My scars are a testament to the love and the relationship that I had for and with that person. And if the scar is deep, so was the love.

So be it. Scars are a testament to life. Scars are a testament that I can love deeply and live deeply and be cut, or even gouged, and that I can heal and continue to live and continue to love. And the scar tissue is stronger than the original flesh ever was. Scars are a testament to life. Scars are only ugly to people who can’t see.

As for grief, you’ll find it comes in waves. When the ship is first wrecked, you’re drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it’s some physical thing. Maybe it’s a happy memory or a photograph. Maybe it’s a person who is also floating. For a while, all you can do is float. Stay alive.

In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don’t even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you’ll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out.

But in between, you can breathe, you can function. You never know what’s going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything…and the wave comes crashing. But in between waves, there is life.

Somewhere down the line, and it’s different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O’Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you’ll come out.

Take it from an old guy. The waves never stop coming, and somehow you don’t really want them to. But you learn that you’ll survive them. And other waves will come. And you’ll survive them too. If you’re lucky, you’ll have lots of scars from lots of loves. And lots of shipwrecks."

I do not have the source for this, but it does help me in times of grief:






Image Source: taken from Imgur

According to www.Churchill.com,

"Introduction - As much as we don’t like to think about it, death is a part of life. While it’s not a nice thought, there’s nothing we can do to stop those we love from passing away when the time comes. It’s understandable to feel sad and even helpless when this happens, but the pain will become easier to cope with over time.
Common feelings after a death

People go through various stages of grief when they’re coming to terms with a death. These five stages have been studied for years:
  1. Denial. By denying the death has happened, it prevents the person from being overwhelmed by grief. It’s normal to feel numb, wondering how life can go on. It can be hard to accept what’s happened.
  1. Anger. Being easily irritated is a normal response to the loss of someone close to you. You might feel like snapping at people, even if it’s unlike you.
  1. Bargaining. While we feel helpless, it’s natural for thoughts to turn to what could’ve been done differently. For example, being nicer to the person or getting medical help earlier.
  1. Depression. When our thoughts return to the present, it often leads to another level of sadness. At this point, it’s normal for a person to struggle most with the loss.
  1. Acceptance. You’re not okay with what’s happened, but you’ve reached a point where you can get on with your life without it having too much of an impact day-to-day.

Understanding the common stages of grief can help a person be better prepared, but everyone grieves differently. There’s no right or wrong amount of time to be upset about losing someone, so let things progress naturally.


The biological process of grief 
Your body responds when you’re grieving. Once grief has triggered a response, you’re likely to experience a number of side effects, including:
  • Boosted adrenaline. Our brain triggers the fight or flight response, leading to a faster heartbeat and additional release of adrenaline. You might feel on high alert.
  • Exhaustion. Often caused by a lack of sleep, grief can lead to insomnia and depression – leaving you drained of energy and motivation.
If you lose someone close to you, be prepared for short-term changes to your health. It’s normal to feel the effects on your body. Staying active and eating well can help.


Daily life when you’re grieving 
How to maintain your regular lifestyle
The impact a death will have on your life is significant. But there are ways to cope with a loss, including:
  • Create a routine. Having a routine in place can help keep you balanced. A structure will give you a solid foundation to rebuild from, at a time when you’re struggling to find your feet.
  • Talk to loved ones. Open up to the people closest to you. You’ll be sharing a lot of the same feelings and talking about them is an important part of grieving.
  • Encourage yourself to participate. It’s natural to withdraw from life when you’re under stress. If you find yourself feeling this way, take small steps to do the things that usually make you happy.

Helping children cope with a death 
The loss of a loved one can be especially hard on children, because it’s probably the first time they’ve experienced these feelings. You’ll play a large part in helping them deal with their grief.
  • Use clear and honest words. Be as clear as possible when speaking to a child. They’re probably struggling to understand what’s happening, so being open will help them process what’s going on.
  • Listen to their concerns and questions. Make sure you answer any questions they have, and let the child know it’s perfectly normal to feel the way they do.
  • Explain funerals. There’s a good chance a child won’t know what a funeral is. If you want them to go, give them a description of why it happens, and what to expect on the day.
  • Help them remember the person. Talking about memories of a lost loved one can be helpful to children. This positive energy is therapeutic and may help them battle through the worst of what they’re experiencing.
  • Do things to keep their minds active. Keep a child happy and distracted with activities such as family days out. Sitting inside for too long won’t help anyone.

Helping adults around you to grieve 
It’s not only children who grieve. You might want to help a partner, friend or family member who’s experiencing this kind of pain. Some of the best methods include:
  • Listening to them. Don’t presume the grieving person would want to be treated the same way you would. Just having someone to listen to them can help. You don’t always have to give advice or have a solution.
  • Talk about the person who’s passed. Sometimes people feel as though mentioning the deceased will be upsetting. But somebody who’s grieving might want to talk about their loved one, so give them time to bring it up.
  • Reaching out. Don’t wait for someone to ask you for help. While you don’t want to be pushy, it’s nice to make sure a person knows you’re there if needed.
  • Point them towards professional help. If they’re struggling to come to terms with their loss, you can suggest they seek professional help.

Getting help with grief 
Finding the support and care you need at this distressing time can make a huge difference. 
Getting emotional support from those around you 
During difficult times, we rely on those closest to us for support. But we’ve got to want their help, so bear in mind these points:
  • Share your issues. Make sure people around you know if you’re struggling. There’s a better chance they’ll be able to help if they know what’s up.
  • Say yes to help. If someone reaches out to offer you advice, be open to their support. A heart-to-heart can make a difference. It’s worth getting a range of support too, from friends and professionals.
It can be uncomfortable to open up about your issues, but it’s important to separate yourself from those doubts to get the help you need.

Taking steps to help with your own emotional health 
Looking after your emotional health and well-being is always important, especially when you’re suffering a loss.
  • Stay physically active. Exercising has been shown to have a positive impact on not only your body, but also your mind. Depression and anxiety can improve when you’re active.
  • Take up a hobby. Take your mind off what’s troubling you by enjoying a hobby of your choice. It’s important to do things you enjoy, and not feel guilty about having a good time.
  • Get enough sleep. A lack of sleep can make things worse. Try to start relaxing before it’s time to go to bed

Support lines and communities 
If you find yourself struggling, and feel like you can’t turn to anyone, there are support helplines to guide you. 
You’ll be speaking to trained professionals, with experience of helping people who are grieving. Just some of the incredible services available include:
  • SupportLine. Provides phone counselling to help people with a wide variety of problems, including bereavement.
  • Bereavement Trust. Focused around helping those who are experiencing grief. A team of volunteers work round the clock to make sure people can get the help and support they need.
  • NHS. If you’re ever feeling dangerously low, the NHS offers a suicide hotline. Always get the support you need.
Whether it’s from your friends, family or these dedicated services, there’s always support available to you after a death. Try not to isolate yourself – instead, reach out and get help. 
If you feel like you want to talk to people who are in a similar situation to you, support groups can be a great help too. Having someone to chat to, who can relate to your situation, is incredibly useful. 
Useful links
https://www.cruse.org.uk/children/how-to-helphttps://www.helpguide.org/articles/grief/coping-with-grief-and-loss.htmhttps://www.mariecurie.org.uk/help/support/bereaved-family-friendshttps://www.nhs.uk/conditions/stress-anxiety-depression/mental-health-helplines/http://www.parentcompanion.org/article/understanding-the-stages-of-grief"



A friend sent me some websites that might help you in your grief and how to handle it with children, and the estate of a loved one:

http://www.lclark.edu/live/files/5969-grief-at-worka-guide-for-employees-and-managers

https://www.petcoach.co/article/grief-the-loss-of-a-pet/

http://www.drugrehab.org/coping-stigma-grieving-overdose-death/

https://www.vitas.com/resources/grief-and-bereavement/helping-grieving-children

https://www.cancer.org/treatment/end-of-life-care/grief-and-loss/depression-and-complicated-grief.html

https://www.neptunesociety.com/resources/preparing-for-the-death-of-a-terminally-ill-loved-one

https://www.homeadvisor.com/r/create-peaceful-at-home-hospice/

https://privatebank.wf.com/conversations/article/settling_a_family_estate

https://www.nytimes.com/2012/09/20/garden/letting-children-share-in-grief.html

https://www.parents.com/toddlers-preschoolers/development/social/talking-to-kids-about-death/

https://www.redfin.com/blog/how-to-be-estate-executor