Information to Help the Newly Diagnosed and to Help Family/Friends Understand Gastroparesis

I have written a series of articles over the years but wanted to put them together, sort them, if you will, so that they would be much easier to get to. I wanted to put them all together in a post to help people find the information they may need right at the moment, so they do not have to hunt through 200 posts. All you have to do is click on the bold, capital letters to reach the articles listed below.


Information to Help Family and Friends Understand Gastroparesis (GP):

TO THE LOVED ONES OF A PERSON DEALING WITH CHRONIC PAIN. This article helps those who may never have experienced chronic pain to understand it.

A LETTER FROM A GPER TO A FRIEND/FAMILY MEMBER. This is to help friends and family understand what it's like living with Gastroparesis.

ADVICE FOR CAREGIVERS WHO WITNESS LOVED ONES SUFFERING FROM GASTROPARESIS. This article is self explanatory. It gives those who take care of GPers advice on how to handle things and what to do/what not to do. It's very helpful.

THE DIFFERENT TESTS TO DIAGNOSE GASTROPARESIS. This is an article that goes through the different tests that can be used to diagnose Gastroparesis, if someone you love is having these symptoms, please call a GI right away. The GI can preform a test or more than one of these tests to confirm the diagnosis.

WHEN TELLING SOMEONE THEY LOOK GREAT BECOMES AN INSULT. This article goes into detail on how telling someone who is chronically ill, especially with GP, that looking great can be an insult. It's a very good article.

HOW TO DEAL WITH THE SITUATION, "BUT YOU DON'T LOOK SICK!" This article goes into detail about how people who say we don't look sick, even though they might mean well, of how it does more harm than good. Some people do not realize this and think that they're being helpful, or even nice. The article goes into detail about why it's a bad thing to say.

RESOURCES TO EXPLAIN DTP/GP OR A CHRONIC ILLNESS TO FAMILY AND FRIENDS. This article goes into detail of trying to explain having Gastroparesis/DTP and/or any chronic illness to family and friends. It tries to explain it in a way that healthy people can understand, because I feel, personally, unless you've been there, it's a bit hard to understand. I wanted to try and find a way to get others to understand because I am tired of being doubted. You shouldn't have to fight your family and friends when you already fight with doctors, nurses, etc. There's just not enough energy for that.

ADVOCACY FOR PATIENTS AND FAMILY/FRIENDS OF A CHRONICALLY ILL PATIENT. This article explains how you and your family should be your advocate when navigating the healthcare system. Sometimes, we are too sick to fight for ourselves, and having someone there with you to help you makes a difference. It gives a lot of pointers on how to be your own advocate as well.

A DOCTOR'S ADVICE TO THOSE WITH A CHRONIC ILLNESS. This article will help you but I think it will also help your family and friends who do not suffer from a chronic illness to understand one.

GASTROPARESIS PATIENTS VS DRUG SEEKERS. This article explains the difference between drug seekers/addicts and people suffering from Gastroparesis and other chronic illnesses which cause pain. It helps the reader to understand the difference. People who suffer from chronic pain, whether it's from nerve damage or other reasons, constantly have to defend themselves in Emergency Rooms, to doctors, to office staff, to family members, and to friends. It's exhausting, especially when we didn't ask for a chronic illness or chronic pain.

GASTROPARESIS VS EATING DISORDERS. This article tells the difference between having an eating disorder and Gastroparesis. I have talked to a lot of GPers (people with Gastroparesis) and they have told me at one time or another, that they were accused of having an eating disorder and was refused treatment. In high school, when I was sick and before I knew what I had, I was accused of pregnancy and then an eating disorder. Some people did get gastroparesis through eating disorders as well. However, I do not think they should be punished nor should we all be punished and refused treatment because of this terrible invisible chronic illness. I am going to share some stories with you that brave women have sent me. Because, they deserve to be heard and the world needs to hear them. They won't be invisible anymore.

GASTROPARESIS VS EATING DISORDERS PART DEUX. This article compares Eating Disorders to Gastroparesis, and the differences between each but there are some similarities, so I can understand why people may be confused between the two. Hopefully, this article will help you be able to tell the difference.

A COLLECTION OF GASTROPARESIS STUDIES AND RESEARCH. This is a collection of studies and research I could find that is currently being done on Gastroparesis. We hope to get more awareness out there so more will be done.


GASTROPARESIS: THE DIFFERENT WAYS IT EFFECTS THE BODY. "There are many kinds of Gastroparesis, many faces of Gastroparesis, and because everyone is different, it is hard to diagnose and treat. I, myself, have had Gastroparesis since about 2000 after an appendix surgery but was officially diagnosed in 2012. I do vomit, but that doesn't make my Gastroparesis more than someone who does not vomit, or my Gastroparesis less than someone who may have a feeding tube. There are also people who gain weight with Gastroparesis. However, Gastroparesis is Gastroparesis. It does not matter how much you weigh, because that does not mean that you are not malnourished or that you are not vitamin deficient. The Vagus Nerve is still damaged."

Image Source: Melissa M.





Resources for the Newly Diagnosed:

FREQUENTLY ASKED QUESTIONS REGARDING GASTROPARESIS. This article contains frequently asked questions regarding gastroparesis and answers to those questions. These are questions I see a lot in groups and on my pages, so I thought I would answer them.

ADVICE FOR THE NEWLY DIAGNOSED WITH GASTROPARESIS/DTP. This article contains more resources for those who have been newly diagnosed with Gastroparesis/DTP.

YOU'VE BEEN DIAGNOSED WITH GP, NOW WHAT? This article gives resources like the Gastroparesis diet, support groups, and other important things to know about Gastroparesis.

THE GASTROPARESIS DIET & RECIPE HELP/IDEAS. This article was written to help those who have been diagnosed and need to change their dietary needs to accompany the illness that invades their digestive systems. The link to this article is definitely in the articles above, for the newly diagnosed. I have collected no just friendly Gastroparesis food recipes, but also recipes for juicing and smoothies. Unfortunately, it is trial and error for everyone, because everyone's GP is different. You just have to find what works for you. There are also support groups for people who have GP who swap recipes and help each other. Additionally, I have uploaded documents containing information about the Gastroparesis diet that the Mayo Clinic gave me.

GASTROPARESIS' EFFECTS ON DENTAL HEALTH. This article goes into what causes dental issues for Gastroparesis warriors. It explores what causes tooth decay, because many GPers lose their teeth, break teeth, and have horrible cavities. There are a variety of factors from vomiting up stomach acid to stripped enamel.

GASTROPARESIS; THE DIFFERENT WAY IT EFFECTS THE BODY. "There are many kinds of Gastroparesis, many faces of Gastroparesis, and because everyone is different, it is hard to diagnose and treat. I, myself, have had Gastroparesis since about 2000 after an appendix surgery but was officially diagnosed in 2012. I do vomit, but that doesn't make my Gastroparesis more than someone who does not vomit, or my Gastroparesis less than someone who may have a feeding tube. There are also people who gain weight with Gastroparesis. However, Gastroparesis is Gastroparesis. It does not matter how much you weigh, because that does not mean that you are not malnourished or that you are not vitamin deficient. The Vagus Nerve is still damaged." This article takes a loot into what Gastroparesis actually is and what causes it before it goes in depth about the different types of Gastroparesis.

THE MANY CAUSES OF GASTROPARESIS & TREATMENT OPTIONS. Disclaimer: There is NO cure for gastroparesis. A lot of people and groups will try to sell things or involve you in a ponzi scheme to sell "cures" to desperate people. If there was a cure, it would be readily available and publicized. I can promise doctors would have given the cure to friends of mine whom have passed. I decided to do an article exploring what causes Gastroparesis. I have been asked this a lot by newly diagnosed Gastroparesis Warriors, and I was curious to see if anything has changed, especially given all of the awareness to this illness that the wonderful members of the GP Community have dedicated themselves to in the past few years. I also wanted to have an article written about what causes Gastroparesis, so that people who are having symptoms of this illness, can have something to refer back to so that the doctor will know what tests to run. If you think you might have Gastroparesis, definitely talk to your Gastroenterologist. You should always consult your doctor if you have questions/concerns. However, if you feel like the advice is not right for you, go in for a second opinion somewhere else. You know your body better than anyone else does.

A COLLECTION OF GASTROPARESIS MEDICAL STUDIES. I like to stay on top of research into Gastroparesis, and that includes medical studies and clinical trials. I like to see how they are faring so that I can see if there's better treatment options on the horizon. I wanted to share my findings with anyone who reads my blog. I believe in hope. I know that sounds odd, but I do. I think hope is powerful. I hold onto hope for better treatments to help millions of people. I know one day we will get there.

GASTROPARESIS MEDICAL STUDIES UPDATE; JOIN AND/OR KEEP UP WITH THE CLINICAL TRIALS.. There are clinical trials being held by The National Institute of Diabetes, Digestive, and Kidney Diseases. There are also other studies that show to be promising regarding medication to help with the cramps, among other things, of Gastroparesis. It all looks really hopeful.

HOW TO OBTAIN DOMPERIDONE. Unfortunately, it is not really prescribed here anymore. So, I uploaded the printout that the DEA has on Domperidone and more information about it.

PROGRESSIONAL TIMELINE OF GASTROPARESIS/EDS/DYSAUTONOMIA. This is a request for timelines for those who have been diagnosed with GP/DTP, EDS, and Dysautonomia. I want to do some research and compare timelines between people to see if I can spot a pattern. Hopefully, I can compile enough research to give it to a doctor/researcher who can take the idea and go from there. I thought it would be an interesting project because I know most of my friends diagnosed with GP suffer from EDS and Dysautonomia too. I am curious to see if there's a connection there but I need a large sample size to see if there is.

THE GASTRIC STIMULATOR PART I - PERSONAL STORIES FROM REAL PEOPLE WHO HAVE HAD THE SURGERY. This article contains personal stories from those who have Gastroparesis and have gotten the gastric stimulator/pacemaker surgery to help them eat. On a side note, there is a group that is composed of people who have had the surgery and are able to answer any questions you might have, and it's important to do your own research and ask questions before a major surgery like this. However, keep in mind that everyone is different when it comes to Gastroparesis. The group is listed below in the Resources article and this article.

INFORMATION ON THE VAGUS NERVE. This article goes into detail about the vagus nerve, what it controls and where it runs through your body. The article also has links to the "Vagus Nerve Stimulator" and "The Brain in Your Gut."

THE GASTRIC BYPASS, THE SLEEVE, AND GP. This article goes into detail about the gastric bypass and sleeve, along with personal stories of those with gastroparesis who had these surgeries. I did a year's worth of research into the gastric bypass, because my GI kept insisting that it would help me. However, I decided it was not for me after speaking to GP friends who had it done, and the they experienced horrifying issues. I did upload all of the paperwork that I was asked to fill out, so you understand the procedure you are committing to.

AN NJ TUBE STORY BY ALLEY. This article is written by a guest blogger and my friend, Alley. She writes about what it's like living with an NJ tube.

GP SURVIVAL COMMANDMENTS. This article was one I wrote after I polled people in support groups on what they wished they had been told these things (the things listed in the blog article) when they were first diagnosed.

GASTROPARESIS: KNOW THE FACTORS FOR THIS MYSTERIOUS STOMACH CONDITION. This article goes on to explain Gastroparesis, "As diabetes cases skyrocket, another condition called gastroparesis is rapidly becoming a more common diagnosis. It reduces the ability of the stomach to empty its contents but does not involve a blockage. Nausea, vomiting, loss of appetite, bloating and chronic abdominal pain are the hallmark symptoms, according to gastroenterologist Michael Cline, DO."

RELAXING AND BREATHING TECHNIQUES FROM THE MAYO CLINIC. I uploaded pages that the Mayo Clinic gave me to teach me how to relax my breathing. It helps during panic attacks but it also helps after you vomit, because it helps to regulate your breathing.

GASTROPARESIS RESOURCES & ONLINE GROUPS. This is a link to all kinds of resources for Gastroparesis, including support groups, blogs, Pinterests, etc. A great article to help you, and it is constantly updated with new groups and information about Gastroparesis.

THE BRAIN IN YOUR GUT. The stomach makes most of your serotonin. So, what happens when you have Gastroparesis and your motility is decreased?








If you are having issues describing Gastroparesis to someone else, this might help as well:

Source: unknown



THE IMPACT OF VITAMIN DEFICIENCIES. This article dives into the different vitamin deficiencies and the symptoms for each. If you notice any of these symptoms, please call your doctor immediately. It is easy for people like us to have low vitamins because we cannot eat like "normal" people.

INFORMATION ABOUT MALNUTRITION. This article explores the symptoms of malnutrition, what causes it, how it effects us, and the treatment for it. This, and vitamin deficiencies, are VERY serious! Please call your doctor if you have the issues outlined in this article.

POOP - WHAT THE DIFFERENT COLORS AND SMELLS MEAN. A lot of people are embarrassed to ask this question when something isn't right. However, this article contains charts and sources to help you figure out what is going on. It is NOT a substitution for medical advice from your doctor. You should always call your doctor if you feel like something is wrong or not like it should be. But, for those of you who have questions, this article will help you and maybe even help you write down questions to take with you to the doctor.

DUMPING SYNDROME. This is an article explaining dumping syndrome; What it is, what causes it, and goes into details about it. I have experienced it first hand, when my stomach wants to empty all at once because the bile doesn't have a lot of places to go. It has cited sources, like all of my articles, so that you can read from the source and write down any questions you may have for the doctor.

INSPIRATION AND HOW TO KEEP YOUR MARRIAGE STRONG DURING A CHRONIC ILLNESS. Marriage is hard enough as it is without adding a chronic illness into the mix. However, life happens. This article will give you some pointers on how to keep your marriage strong when your chronically sick.

BRAIN FOG: WHAT IT IS,CAUSES, SYMPTOMS, AND TREATMENTS. "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."

HOW GP/DTP - PAIN EMOTIONALLY AND PHYSICALLY. This article describes and gives suggestions on how to cope with pain related to Gastroparesis and Digestive Tract Paralysis (DTP). It was compiled from suggestions given by other warriors who are fighting the same fight.

HOW TO STAY MOTIVATED. It is really easy to lose pleasure in things you once loved, and it's hard to look on the bright side when you're constantly sick. However, this article will give some ideas about keeping motivated, even during the worst of times. You're NOT alone!

HOW TO STAY POSITIVE, ESPECIALLY IN DIFFICULT SITUATIONS. This article is a lot like the article above. It gives ideas and ways to stay positive, even when the world seems so bleak because you're constantly sick.

FEELING GOOD WHEN YOU'RE FEELING DOWN. This article gives pointers on how to stay positive and feel good when you become depressed. We all get really sad every now and then, especially when we're overwhelmed and tired. This article gives some tips that might help. But, if you feel really down all of the time, you need to talk to your doctor.

HANDLING HOLIDAYS WITH A CHRONIC ILLNESS. The holidays are coming up and this article gives tips on how to get through the holidays with a chronic illness like Gastroparesis, because almost or all of our holidays are centered around food.

INFORMATION ABOUT GASTROPARESIS AND TRAVELING WITH GP. This article will give you information on what Gastroparesis is, what causes it, and traveling information. I obtained in depth handouts from the Mayo Clinic and uploaded them for everyone. The article has information from Mayo on how to travel with Gastroparesis, and a link to an article on traveling with a feeding tube. It also has a link to the Gastroparesis diet.

SOCIALIZING WITH A CHRONIC ILLNESS. It is extremely hard to socialize with a chronic illness, but it can be done thanks to modern technology! "Socializing is hard enough when you are a healthy, human being. You could be shy or nervous to talk to others. However, with a chronic, invisible illness, it's even harder. Imagine having that nervousness and shyness leading to vomiting, intestinal spasms, bloating, and many other things but the main culprit is fatigue." To find out how to get around that, you'll have to read the article!

HOW TO FEEL SEXY OR HAVE SEX WITH A CHRONIC ILLNESS. I've gotten this question a few times but people are too embarrassed to ask it, usually. I decided to write an article on it that might help.

PREGNANCY AND GASTROPARESIS. I've gotten this question a lot too, so I consulted people who have been pregnant with gp, and wrote an article to help those who may be thinking of getting pregnant but worried about their GP.

THE GRIEVING PROCESS FOR A CHRONIC ILLNESS AND HOW TO OVERCOME IT. People go through a mourning process once they are diagnosed with a chronic illness because the things they could do before, they might not be able to do now. Your old life is dead, and you mourn it as you go on with your new life. This article will help with that.

SUICIDE AND CHRONIC ILLNESS. This is an important article because a lot of people with chronic illnesses go through depression. It's important to know when to ask for help and this article is to help prevent more suicides because of chronic illnesses.

LOSING A LOVED ONE TO A CHRONIC ILLNESS AND HOW TO HANDLE THE GRIEF. I've lost a lot of friends because of complications due to their chronic illnesses. This article will help you on how to handle grief in a healthy way. Death is a part of life. Just please know when you need to ask for help.

Source: A friend of mine made these a few years ago for Gastroparesis Awareness Month in August.

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."

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.

A Letter From A GPer to A Friend/Family Member

I wrote this letter as a note on my public Gastroparesis Facebook page (www.facebook.com/emilysstomach) today, trying to get out how I feel while trying to get other people to understand how lonely gastroparesis can be. I wanted to get out my feelings and I wanted to try and let my friends and family know why I am the way I am right now. It's not because I don't want to go out, and it's not because I don't want to spend time with them - smells from a movie theatre make me ill and I'm worried I'll vomit in the middle of a movie or an outing, embarrassing myself. So, I wanted to write a letter to them to help them understand why I am usually home but that I don't like to be home by myself. I would definitely welcome company. This illness is isolating and it is depressing after a while because people give up on you. No one wants to call you to ask you to hang out knowing you will say no and no one really wants to come over to your house to hang out when they want to go out and see a brand new movie they've been waiting months for. So, I wanted to put how I felt down in words. You'll find those words below:



Dear Friends and Family,

We are fighters. We are overlooked because our illness is invisible...but the pain is visible behind our eyes if you look closely. We are strong...we have to be stronger than most in order to survive on a day to day basis. We are all from different walks of life. You may not know we suffer, but we do. Gastroparesis can touch anyone at any age - children, teenagers, adults, the elderly...and there still isn't enough research to determine why.


GP is caused when the vagus nerve is damaged, and nerve damage in any other part of the body is severely painful, so imagine having nerve damage in your stomach where you have a lot more nerves, sensitive nerves. Vagus nerve damage can be caused by a variety of factors, like diabetes, and other reasons.

People tell us gastroparesis shouldn't hurt, but it does. If other people go to the doctor and tell the doctor they have nerve damage in their knees or their back, they're treated for pain and it's understood that nerve damage there hurts, so why would nerve damage in the stomach, with the most sensitive nerves not be as painful or more painful?

If you meet someone with gastroparesis, please be kind. We are all fighting a battle to stay alive, not to starve to death, and to try to be as normal as possible. We miss being able to eat during holidays and to take part in things that we used to. Most of us can't because we lack the energy, which stems from lack of nutrition, but it's not by our choice.

If you know someone with gastroparesis, be kind to them. Give them a hug. Invite them out anyway and if they can't go out with you, please try to make an effort to go to them to spend time with them at their house. Loneliness is hard and so is isolation. We miss company and being social. Some of us just need to be near a bathroom but we miss our friends and family.

Most of the time we feel like we live in a prison we can't escape from. Just please try to be patient and try to understand what it's like walking in our shoes. It's a hard road, and all we need is a little bit of support and understanding. That would mean everything to us if people took a little bit of time to understand what we go through on a daily basis and still wanted to be around us, despite all of this. It would make us cry with joy just to have people understand, come over, and even do something low key like watch a movie with us. It would mean more to us than you would ever know, just that simple act of kindness.

We are not making excuses when we say we cannot go out. We are not trying to avoid anyone. We aren't trying to hurt anyone's feelings. We feel devastated enough that we have to stay home most of the time, but that doesn't mean you're not welcome to come over and visit. We would love that. So, for those of you who have friends with #DTP or Gastroparesis, please know that it's NOT you or anything you did - not your fault at all, we just cannot do the things we used to do and that kills us a little bit inside. It's just as hard for us to adjust to this as it is for you.

We want normal back, or as close to normal as we can get. So please, try to make the effort to come over to our house and distract us. We need it. We need the happiness you inject into our lives. We need you. We need our friends and family and support. You are our lifeline to the outside world. You don't realize how important you are to us, but you really are. Thank you for being a friend, even though we know it's hard on you. Thank you for being you.



Sincerely,
GPers Everywhere


**Please support my Facebook page, where I wrote this note to depict how I was feeling today, by kindly clicking on “like” to show your support and to raise awareness for gastroparesis on Facebook: www.facebook.com/emilysstomach

Handling Holidays with A Chronic Illness

I know this time of year is really rough for all of us. As someone with GP, I cannot eat like normal people do on thanksgiving. I plan to cook for my family and friends, but I was wondering how to deal with the fact that I can't eat like normal people and what to do about it. I did some research and found some articles that might help the chronically ill deal with this issue. Additionally, I found some information for family members who always tell us to eat something or try to force us to eat when we are unable to. I hope this will help everyone a bit.

Image taken from: http://images.wisegeek.com/sad-dark-hair-woman.jpg


WebMD (http://www.webmd.com/balance/features/chronic-illness-holidays) gives us a wonderful source for how to deal with the holidays and loved ones as well. The key seems to be planning ahead and communicating your illness and requirements in advance to family and loved ones:

"Rosalind Joffe, MEd, once hosted a Thanksgiving dinner for 22 people at her house. She planned it months in advance. She hired someone to clean. She created a menu and delegated various dishes to guests. A friend came over the day before the holiday to set the table. Relatives were assigned jobs to serve dinner and clean up afterwards. Joffe has the planning sense of Martha Stewart. She also has multiple sclerosis (MS) and ulcerative colitis.

While it was challenging to host Thanksgiving, she says she'd have felt worse if she hadn't. "The key was advance planning," she tells WebMD. "What I've learned is if I ask for help in advance, even with my own family, people don't feel put upon. They feel they're a part of the event."

Joffe is among the many people living with chronic illness -- defined as lasting more than three months, being persistent or recurrent, having a significant health impact, and typically being incurable. So, with Christmas and Hanukkah at hand, times when everyone is supposed to participate and feel cheerful, what are some strategies for coping?



Do Holidays Make Chronic Illnesses Worse?

There's always the temptation to abandon healthful living routines around the holidays. Eating too much, not getting enough exercise, staying up late, worrying about family members getting along -- all these things can make you feel worse. But do they negatively affect your health?

Joffe, who coaches people with chronic illness in the Boston area to thrive in the workplace, says it depends on the disease. "With diabetes, heart conditions, or epilepsy, for example, you must take care of yourself or the disease gets worse. With autoimmune diseases, such as MS, fibromyalgia, or lupus, your symptoms will get worse but not the disease itself."

What about the holiday blues? Do the holidays really bring on episodes of depression? Michael Thase, MD, during a WebMD Live Event, said geography could play a role. "As people living in the northern hemisphere, we seem to be somewhat more prone to development of depression in the fall and winter months. The fact that this period of risk coincides with our holidays is kind of like a bad coincidence. For example, I'm not sure that I've encountered any writing about the holiday blues in New Zealand, Australia, or South Africa."



Speak Up

"Holidays act like a lightning rod where all the physical and social concerns around chronic illness get really highlighted," says Patricia Fennell, MSW, LCSW-R. She explains that the demands and expectations around holidays can "out" people whose conditions were hardly noticeable. During the year, they spend so much of their energy working and handling the daily chores of living that they have little time left for socializing. Come the holidays, they're expected to show up and contribute.

"Many chronic illnesses, such as diabetes, depression, arthritis, fibromyalgia, etc., are 'invisible,'" Fennell says. "People go to work or volunteer or shuttle kids to school. Most of the time, they don't look sick. When illness flares up, their pain is invisible. Or they have bone-numbing fatigue, so bad that they can't take a shower and go to the store in the same day. There's a cultural misperception that says you're not sick unless you look sick. They need to make their illness visible by talking about it."

Fennell, who is president and CEO of Albany Health Management, Inc., in Albany, N.Y., coaches patients on how to negotiate needs. "People don't know how to ask for what they need. They'll stay home from a holiday party because they can't stand that long. We need a new social etiquette for people with chronic illness."



Party Strategies: Ask for What You Need in Advance

Fennell describes a typical holiday scenario. "You're invited to Aunt Jane's. Let her know that you'll do your best to attend her party, but that if your illness flares up, you may have to bow out. Ask her how much lead time she needs. She'll say, 'Anything's fine.' Tell her you'll call her 48 hours in advance to let her know. Uncle Bob will still be annoyed if you don't come, but if you predict that you're unpredictable, people will generally handle it better."

She advises stating your needs in behavioral rather than general terms. "Don't just tell Aunt Jane you'll have to leave early. Tell her you've been feeling fatigued and can stay only two or three hours. Also tell her that standing tires you out, and ask her to have a seat for you. Putting it in behavioral terms makes it easier for Aunt Jane to conceptualize and to accommodate."

Many hosts and restaurants have become accustomed to considering various dietary needs for guests who have heart disease or diabetes or another condition that requires a restricted diet. "They should be offering options for people," Fennell tells WebMD. "If you don't know what's being served, carry a large handbag with snacks and water, or offer to bring a dish that can be shared with others."

When you're the host, whatever you do don't wait till the last minute to ask for help, says Joffe. "You may not get the help you need. And if people do help, they might resent it. Become an expert at planning. Asking in advance allows people to help gracefully."



Managing the Handicap Parking Space

Shopping and gift giving present special challenges, not the least of which is managing the mall. If your illness is invisible, the challenge can start when you get out of your car. Some less-than-jolly shopper who parked way out in left field will let you know that you have no business parking in a handicap space. Try to think of a humorous retort, like that of a cancer patient who plucks off her wig and smiles.

Joffe advises not letting presents and errands get out of control. "Many people with chronic illness aren't in the best financial situation but don't have the energy to shop for bargains. Plan in advance. Take a day off work so you can shop yet avoid the weekend crowds. The key is what matters most to you. Is it going into your bank account? Would a simple note do? Don't go into lock-step motion."



Ways to Relieve Holiday Stress

An article in Arthritis Today offers three tips for managing holiday stress:

Daily rest and relaxation. Don't get stuck in a never-ending to-do list. Do a crossword puzzle or take a walk or a nap. The mental and physical break will rejuvenate you.

Prioritize. Decide how much shopping, cooking, or partying you can do and stick to it. Ask for help.

Volunteer. Take toys to the Marine Toys-for-Tots Foundation, take food to homebound seniors through Meals on Wheels, or provide goods and services for Hurricane Katrina victims. It will boost your spirit and remind you what the holidays are about.

Patch Adams, MD, the real doctor whose life was the basis of the Robin Williams' movie, would agree that volunteering is good for you. He heads the Gesundheit! Institute in Arlington, Va. It's the umbrella organization for his work to raise funds for a variety of projects, including the building of a free hospital in rural West Virginia.

He tells WebMD, "My best advice for someone with chronic illness coping with the holidays is to work out with their families not to give presents, but instead to give money to local families who are poor, and consume half of what they normally consume. Make it about the spirit of giving."

The numbers of people with chronic illness are growing, and that's not necessarily a bad thing, says Fennell. "People are living today with heart disease and cancers that were once considered terminal illnesses, not chronic illnesses."

The growing numbers also mean you're not alone. Next time you go to a holiday party, look around. Some of those healthy looking people may have chronic illnesses, too."

Image Source: On Image.









This part is for your loved ones, family and friends and dealing with your loved ones, family, and friends. It's to help them understand what we go through and what they can do for the chronically ill. This source does talk about making food for your chronically ill loved one, but with GP, that can be a challenge. We have a very strict diet but you can modify this article to match up with your loved one's dietary restrictions.




According to Kevin M.D. (http://www.kevinmd.com/blog/2011/11/living-chronic-illness-holiday-season.html):

"In the U.S., we’re getting ready to celebrate Thanksgiving. Soon, people around the world will turn their attention to the holiday season. Chronic health problems can take a toll on relationships any time of the year. Most people have to experience unrelenting pain or illness themselves before they understand how debilitating it is, physically and mentally. Loved-ones (by whom I mean family and close friends) may be in some form of denial about what’s happened to you, or they may be scared and worried about the future. Bottom line, suffering from a chronic condition can be an ongoing crisis—for you and for those you’re close to.

That crisis can come to a head during the holidays when people’s expectations of one another are high and when stress levels for everyone are likely to be off the charts for any number of reasons—health, financial, relationship issues. If you’re like me, during the rest of the year, you carefully limit interactions with others in order to manage your symptoms; on a typical day, your most complex decision may be to choose between showering and shopping! But when the holidays arrive, you’re suddenly thrust into the middle of a lively and chaotic social scene where you’re expected to participate in a range of activities, often for days in a row. A bit of advance warning to loved-ones can go a long way toward minimizing stress levels over unrealistic expectations.

I know that this piece won’t apply to everyone. One of the heartbreaking consequences of living with chronic pain and illness is that some people are unable to be with loved-ones at all during the holidays, either because people are too disabled by their pain or illness to be able to gather with others, or because family and close friends having drifted out of their lives. I know the pain of that isolation; I’ll be writing about it in my next piece.

For those of you who are able to gather with others, the holidays can be a recipe for double disaster—the increase in activity exacerbates your physical symptoms, while coping with sadness, frustration, and maybe even guilt about your physical limitations gives rise to emotional pain. No wonder many people with health problems dread the approaching holidays.

If you’re one of the many people with chronic health problems who don’t look sick, the initiative is with you to make your condition visible. Here are some suggestions for helping loved-ones understand what your life is like and for giving them a heads-up on what to expect from you during the holidays.



Share information with them from the Internet or from books

Often the best way to educate loved-ones about chronic pain and illness is to use a neutral source because it takes the emotional impact out of the communication. A quick web search will yield a host of organizations devoted to every conceivable medical problem. Print out select pages or forward a few links to family and close friends. Alternatively, if you have a book about your condition, photocopy the pages that cover what you’d like them to know about you. In your accompanying note, keep it “light”—you could joke that “there won’t be a test.” But also make it clear that this favor you’re asking is important to you.



Write a letter

Many years ago, two friends of mine were in couples therapy. They weren’t able to speak to each other about their marital problems without one of them shutting down emotionally and the other reacting by shouting recriminations. Their therapist told them to write letters to each other expressing their feelings and their concerns about the marriage. It turned out to be a major first step in healing their relationship.

If you decide to write a letter, be sure it’s not accusatory. In composing it, use the word “I” more than the word “you.” Without complaining, express how difficult it’s been for you to adjust to this unexpected change in your life and how you wish you could be as active as you once were during the holidays.

You could briefly describe what your day-to-day life is like, including how unpredictable your condition is which means that you can’t know for sure how you’ll feel on the day of the actual gathering no matter how much you rest in advance. (This is the hardest concept for most loved-ones to comprehend—that we can spend weeks before a big event in full “rest mode,” but still feel very sick when the day arrives.)

I would end by telling them what to expect from you during the holidays—that you may have to skip some events, that you may have to excuse yourself right after eating to go lie down, that you may have to come late and leave early. In my experience, spelling out my limitations ahead of time is helpful not just to others, but to me, because I find it much easier to exercise the self-discipline it takes to excuse myself from a room full of people if I know that at least some of them are already expecting it.

P.S. It will be tempting to send an email, and if you have a lot of people you want to communicate with, it may be the most feasible way to reach everyone. But one thing’s for sure: people will read a handwritten letter, antiquated document that it’s become!




Find that ONE ally and enlist his or her help

If you have just one close friend or family member who understands what you’re going through, enlist his or her help in explaining your condition and your limitations. Before the holidays start, you could ask your ally to talk to loved-ones on your behalf or to be present when you talk to them. Ask your ally to be supportive if you have to excuse yourself in the middle of a gathering, or even to let you know if you’re wilting (as we call it in my household). It’s so helpful for me to be “prompted” by my ally because, when I start to overdo things, adrenaline kicks in which fools me into thinking I’m doing fine. But using adrenaline to get by just sets me up for a bad crash later on.

Your ally may be a close friend or family member who’s just waiting for you to enlist his or her help. Think long and hard before you decide there’s no such person in your life.




In the end, you may have to recognize that some loved-ones may never accept your limitations

Some family and close friends may refuse to accept that you’re disabled by pain or illness. I know this from personal experience and it hurts. Try to recognize that this inability is about them, not you. Don’t let their doubt make you doubt yourself. Your medical condition may trigger their own fears about illness and mortality, or they may be so caught up in problems in their own lives that they’re not able to see their way clear to empathize with you.

Just as you can’t force people to love you, you can’t force people to accept you. But getting angry at them just exacerbates your own symptoms. That’s why it’s important to protect yourself from allowing their lack of understanding to continually upset you. Think of it as protecting yourself from another chronic condition: chronic anger.

The physical suffering that accompanies chronic pain and illness is hard enough to endure without adding emotional suffering to it. When I feel let down family or close friends, the first thing I do is acknowledge how much it hurts. Then I reflect on the many possible reasons for their behavior. Finally, I work on genuinely wishing them well. These three steps immediately lessen my emotional suffering.

As you experiment with these suggestions, treat yourself kindly. Don’t blame yourself if one of them doesn’t work out. Instead, give yourself credit for having had the courage to try! My heartfelt wish is that your loved-ones come to understand and accept your limitations, but that if they don’t, you’ll be able to accept them as they are without bitterness."

According to EmpoHER (http://www.empowher.com/wellness/content/helping-chronically-ill-over-holidays):

"One of the unique problems that comes with chronic illness is that ... it lasts so long.

Some chronically ill people are fortunate to have a solid support network of family and friends. For others, things are very different.

If there were people interested in helping, while they may have been dedicated and compassionate at first, the long haul proved to be too long. The sprint they could run was too short for the marathon of chronic illness.

Many of us have outlasted our helping companions and carry on down the bleak road alone.

Do you know someone who is alone this holiday season? Maybe you can't commit great blocks of time or resources to their care and comfort.

But if you can spend a little time, and maybe even a little money, and you just need some suggestions, you're headed in the right direction.

You don't have to look for big things to make a difference for many who are chronically ill.

Things that you may take for granted, that seem like no big deal in your own life can be things that have stumped the chronically ill with a wall of impossibility for a long time.

Ever made lunch? Fixing something for your friend will not only brighten their day with your caring actions, it will also take care of a practical problem.

Some people who are chronically ill must spend most of their energy putting a meal together, needing to recuperate for the rest of the day afterward. Others just end up not eating.

Washing laundry, sticking it in the dryer and doing some folding are simple chores. Having a friend come over to go through these paces can bring a sense of order to a home that may be short on that quality.

Clean clothes, especially when they've been hung up and placed in drawers, bespeak affection and closeness for someone who may not feel that very often. Not to mention, you will save them their little energy quota for the day for other things.

When you have to run to the store, perhaps you could call or stop by to see if your friend needs anything as well. One trip, two sets of errands accomplished. Less stress and pressure on your friend, and you go home feeling like you've made a difference.

This time of year, snow can be a going concern in many areas of the country. Chances are your friend can't lift a shovel let alone clean a walk or driveway.

Whether we're talking about a shovel, a snowblower, or a snow plow -- whether you do the job yourself or pay someone else to do it -- removing their snow can also remove the burden of being faced with an insurmountable task.

And if you'd like some hot chocolate afterwards, you could come in and spend time with your friend ... and make hot chocolate for both of you.

The possibilities, really, are endless if you want to help someone who is chronically ill. The holes in their abilities and resources are often vast and widespread.

Do it for the holiday season, or just do it for a friend whose daily existence may be tougher than you can begin to fathom."

Dealing with isolation can be a huge problem for gastroparesis patient and also the chronically ill. Many of us are too sick to go out anywhere or even be around food. In that case, the source below will give you some tips on what to do when you're isolated during the holidays.






According to You Don't Look Sick (http://www.butyoudontlooksick.com/articles/guest-writers/tip-handling-isolation-that-comes-from-chronic-illness/):

"The title is ominous, I know. But for so many of us that suffer from chronic illnesses, it’s an all too true reality. I must preface this by saying that not all people who suffer with a chronic illness experience this. However, the subtleties of it grow as time passes and one is confronted with the reality of it, be it large or small, at some point in their lives.

It may be as small as the awareness of the decrease of invitations by friends due to our physical limitations. For some, that awareness grows to a more glaring, in your face, epiphany that friends that were always there before suddenly wish no part in your life…excuses a plenty. It’s not even relegated to just friends. Family roles play a big part of isolation experiences for the chronically ill. Those closest to us are often the ones to fall into one of two categories. Faithfully standing by no matter what or those that turn a blind-eye and deaf-ear to our honest answer to their question, “How are you?”

It’s important for the chronically ill to have a plan to handle times of feeling isolated. This is true whether you’re feeling isolated now or think it’s a possibility for your future. The realities of life are handled better if we understand the possibilities and have a plan on ways in which to deal with such times. Let’s talk about some ways to handle isolation times in your life.

We’re blessed to live in a time of the information super highway. Social network sites make it much easier to remain in our homes, if needed, yet still be interactive on a day to day basis. Whether it be local friends and family or online acquaintances, it’s there for our using and can keep us connected to the real world. Some suggestions might be the bydls.com on facebook or the butyoudontlooksick.com message boards

Not only do we have a multitude of e-social activities to participate in, we have a vast array of research at our fingertips. We can be pro-active in our medical care simply by spending time doing a bit of our own educating.

Can we say real life support groups? If ever there was a source of interaction for the chronically ill and isolated, it’s support groups. Some of the most wonderful people you’d ever want to meet are in a support group and can truly say, “Been there, done that!” Or, they say nothing at all but have golden ears to listen with.

Blogging is one of my favorites. It’s like your online diary. I like to be able to express myself, and even my feelings of isolation, in words. Many blog sites can be set to private so that no one, other than those you want, can read them. Many of the aforementioned support group sites offer their own blog space just for you. You never know when someone will read your blog and be totally blown away by the knowledge that someone else is going through exactly what you are.

So, you see, isolation doesn’t have to take over. Yes, there are times where quiet reflection is needed but no longer do we have to draw back into a dark place in our minds where loneliness rules. Like the old yellow pages ad said, “Let your fingers do the walking!” Get out there via the internet and keep in touch with friends and family. Find new friends that can relate to what you’re going through and can offer hope, encouragement and support that you may not have otherwise. It’s a good choice to make and certainly a good way to handle isolation for the chronically ill."

I really hope this article will help you deal with the holiday stresses. I know all holidays are centered around food, and it's hard to ignore. But, remember, even though the holidays are tough, YOU ARE TOUGHER!