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."

To the Loved Ones of a Person Living With Chronic Pain

This is from an article I found online that I wanted to save. It's from http://themighty.com/2016/01/to-the-loved-ones-of-a-person-living-with-chronic-pain/. I wanted to put it in my blog so that I could come back later and refer to it and find it if I needed to. I like having things in one place so it's easier for me to find it. This is a great article and I wanted to save it in order to share it with others. The writer put down exactly how I felt and this article really spoke to me. I hope it will speak to you, too.


And it reads,

"I’m not sure if chronic pain is isolating in and of itself, but it’s often the lack of understanding that (at least for me) makes me feel alone sometimes. Sometimes the lack of empathy is more unbearable than the pain itself, like you’re living in a state that is so entirely foreign and inconceivable to most people — and that is what makes it alienating.

Good portions of my day are usually spent being guilt-tripped by friends that I haven’t seen them, haven’t FaceTimed them, never call, never text, etc. Before I always felt the need to apologize and explain myself, but most of the time now, I am so sick of constantly having to explain myself. People don’t realize the fear — the fear of being judged, the fear of not being understood, the fear of feeling vulnerable. That fear strengthened my relationships with close friends and loosened my ties with acquaintances.

In my worst pain, all I wanted was to be distracted. I wasn’t capable mentally and physically of contributing to conversations, and constantly explaining to friends and family what my pain is like, the current updates on my health and hearing the (mostly) senseless feedback was unbearable. (Keep in mind, for most of my grueling experience with pain, I had gained weight I am slowly losing, and compared to what I used to look like, I generally feel like I let myself go. My hair and make up is never done. I dress for comfort now mostly.) Sometimes I avoided people entirely because as nice as it is sometimes to be asked how you’re doing, it can also be a pain if you’re being asked 15 times in a row. I already do this with doctors almost every day.

Some people have taken it personally that I haven’t tried to “rekindle” relationships with them. The best response I have to this is that it is nothing personal. I am generally so overwhelmed by all the things I have to do and am so exhausted that old friends unfortunately get passed to the wayside so I can maintain the friendships for the friends who aren’t just “checking in” but calling me every day. To me, the people who loved me at my darkest are the ones I prioritize.

Here are several things I believe need to be known:

In general, I would rather hear about you. Your day, your funny experiences, etc. than talking about my health problems. I generally feel uncomfortable having to explain myself, and for some people, it’s just too damn sad, so at the risk of making it uncomfortable, let’s keep it about you. Or just send me funny things. I always appreciate it. No one understands how boring this gets sometimes. I generally try to “shield” people from how bad my pain really is.

If I cancel plans last minute, it’s never because I don’t feel like coming. I am in my house, doctor’s offices or volunteering for a good percent of my day, so if I can handle it, I always want to go out. Some people are good about this and some obviously aren’t. I’ve just decided I can’t feel bad about making decisions that may affect other people. I’m responsible for myself and need to take accountability for my actions. No one understands my body like I do, so I have to make judgment calls…whether it upsets other people or not.

I try to explain to people that my days sometimes feel like a sh*tty, charged iPhone. I have limits. There is only so much I can do every before my battery dies and everything takes some battery life. Especially those moments when you think you have 10 percent left and all of sudden you’re at 2 percent. Sometimes this becomes an anxious social situation. Situations where I am out with friends and I haven’t driven — I have no control. If I need to go home but can’t, I panic. I avoid these situations as much as possible.

Having a “good day” doesn’t mean I’m better; it just means I’m having a good day. And even if I’m smiling and looking like I’m having a great time, there’s a good chance I’m screaming internally. If I need to leave right at the end of a dinner or cut things off early, again, it has nothing to do with you.

When I say that I can’t be cured or that I’ll never be healthy, I’m not trying to be negative. My life is not CrossFit. I have boundaries and limitations. This is my reality and I’ve come to terms with it. I’ve accepted it. I hope others do, too.

Don’t be offended if I forget things you’ve told me. When my pain is bad, my memory can be extremely foggy and my short-term recall is really bad. Most people refer to it as “fibro fog,” and it’s a real thing. Google it.

I don’t want to be known as “the girl with pain.” I want to be normal and treated like everyone else. I still want to be invited to things. I hate to play the pain card and truly feel happiest when I’m in a “normal” setting.

Just because you see me posting online doesn’t mean I’m feeling better. Sometimes I am in a ton of pain but my choices boil down to sitting and crying or distracting myself.

I always try to be in a good, positive mood, but sometimes when you’re running on no sleep with lots of pain, it compromises your mood. Sometimes I just don’t want to do anything with anyone. Or talk to anyone. I need my alone time.

Small, thoughtful gestures mean the world to me. Actions always speak louder than words.

Dealing with chronic pain drains me every day. People who have known me forever have known me as an extrovert, but that is changing.

Even if I’m having a bad day or a lot of pain, your problems are still valid to me. Never think that because my problems seem more serious that I don’t want to listen to yours. I never purposefully try and make it a competition.

I still struggle with figuring out what I need from my friends and family sometimes. I hope people understand that I never intentionally try to discuss my health for pity, sympathy or attention. I wish people could understand that dealing with this is just a big part of my life, whether I want it to be or not. I try really hard to help people that are dealing with the same problems. I don’t want to be pitied, babied, fawned over or put on a pedestal. And certainly not be to looked down upon or judged.

It’s when people are uncomfortable with me that I become uncomfortable with myself. But I am comfortable with myself, and I own who I am.

Follow this journey on Slightly Distressed Damsel.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images"

My First Flight with GP & Updates for this Week

My fraternity brother decided to have his birthday shindig in Fort Lauderdale because they are known for their Tiki drinks. So, this meant that it was going to be my first time flying with a SPINAL CORD STIMULATOR and with GP. Needless to say, I was a bit nervous. My husband gets hassled every time he goes to the airport because he has an insulin pump - so what were they going to do to me?

We got there and checked in early. Everything actually went pretty smoothly. We checked our bags and then went to security. I took off my shoes and put all of my stuff in the bins (the body scanners were disabled, which is good because of the implant, I can't go through them) and went through the metal detector. The TSA agent yelled at me because I left my stuff in the bins to go through the machine, not realizing that my husband was behind me keeping an eye on my things. When the TSA agent realized this, he apologized to me.

We boarded our flight and took off for Florida. The engine smell was making me very ill, but I was in the window seat out of three seats, which were all full. So, I couldn't exactly get up to run to the bathroom. I had a bag, just in case. I just felt extremely nauseated but didn't vomit. I was quite proud of myself.

When we got to the hotel, they didn't give us a room block like they said they were going to, so all of my fraternity brothers and friends were scattered all over the hotel. I sat by the hot tub while I was talking to friends and this rude security guard comes out of nowhere. We were being quiet. There were even a group of teenagers sitting by us and they were quiet too. The front desk said we could stay in the hot tub until 12am but the security guard herded us like cattle out of the pool area and locked it. Then, he spent the rest of the night patrolling it. I wanted to punch him in the face, mostly because I don't get out much and I REALLY wanted to hang out with my friends.

So, the next morning, the hubs and I got up and went to the hot tub, since it was open now. We met a friend there. They ate ice cream in the hot tub while I just soaked. The water felt SO good on my poor muscles. Bending over to vomit really does take a toll on your back and my SCES is still healing in place, too.

After the hot tub, we took a nap. When he woke up, it was time to dress for dinner which was at the MAI KAI RESTAURANT.









I was looking forward to hanging out with my friends and just being OUT and having FUN! However, we were lead to go back to a private-ish room. I ordered one Tiki drink, which I regretted later, but I wanted to celebrate actually smelling the beach and being with my brothers and friends. We were down there to celebrate one of my good friend's birthdays! Anyway, the waitress was great in the back area where we sat. Our group had to be broken up into three parts for dinner and the show that the restaurant puts on. We were in group three.

Finally, we were seated for dinner. I found soup that I could eat that wouldn't make me sick that I was pretty happy about. However, we had BBBBBAAADDDD service! The guy took an hour to fill up our water glasses and never checked to see if we had refills. He wouldn't get his manager when we asked. One of my friend's food was too spicy that even he couldn't eat it. My soup was also really spicy and I couldn't eat it either. Usually, that kind of soup isn't spicy at all. The manager comped some of our meals but we refused to go to the show after that because of the bad service we got.

So, we all went back to the hotel room and goofed off.

I pushed myself too hard this past weekend and the past few days. I cleaned my room because I couldn't take it anymore. I think I managed to get the weird spells out of the carpet. All the laundry is done, which is awesome because we had mountains. I've been vacuuming the room daily to help Jesse with his allergies. Oh! And we hired a maid! She'll be here Wednesday afternoons. I'm very happy about that because I usually don't have the energy to clean. I wanted to clean our room though to do something nice for my husband since he's been so good to me. He's been patient and understanding about me getting sick so the least I can do is the laundry and to clean up our room so he can walk without tripping on stuff! lol









Still getting over pneumonia. Everything still makes me a bit tired. Trying to get up and move around as much as possible but that wears me out too.

It's Not Easy Being Green: Hold On or Let Go?

This is from the blog of one of my former friends and the creator of the Green's Not Easy Page on Facebook; She started writing a blog based on her experiences and I would like to reblog this because it's a great article on how relationships change when you have an invisible illness. Please click on the link below to read her blog entry:

It's Not Easy Being Green: Hold On or Let Go?: One of the largest struggles I’ve had to overcome since I’ve been sick is how to deal with social situations.


If you have gastroparesis and you're looking for a support group, please click to join the Gastroparesis Support Group on Facebook: http://www.facebook.com/groups/StrongerthanGP/

The Holiday Aftermath

My husband and I went to Augusta this weekend to visit family. I ended up having a bad GP flare up and slept most of it off, so I didn't get to visit with people like I wanted to - which made me feel like a horrible friend. But, I didn't get sick in the car! That was a good thing. I brought my bucket with me just in case but we also brought my cats and they wanted my bucket.

I got to see my niece open up all of her presents. She kept saying, "Wow" after each present. She really liked the small fake smart phone I got her that had a picture of an owl talking to her telling her which buttons to press. I got her a dog on a string to pull around. She couldn't quite understand the concept, so she picked up the entire thing and carried it around!

I got to spend some time with my mom, my youngest sister, and my niece. Then, I went over and stayed/spent time with my mother-in-law and my sister-in-law. It was just nice to spend some time with everyone. My phone died, and guess who didn't remember to bring her phone charger? Guess who had a charger in the car that only charged while the car was on? *facepalm*

We came back to our house on Christmas Eve and had Christmas with one of my best friends and one of my fraternity brothers. I think they loved the presents we picked out for them. I got a copy of River Song's journal, which makes me very happy. I'm going to keep my GP musings in there when I'm not close to my laptop.

Christmas Day was great. We went to one of my best friend's house for Christmas dinner. I got to see two of my good friends who have since moved to different states, so it was great to see them. I ate a tiny bit of turkey, dressing, a bit of mashed potatoes, and two slices of homemade apple pie (one of my weaknesses but it was delicious). I knew I shouldn't have eaten it but it's hard for me to give up apple pie. Well, I'm paying for eating what I wanted to last night.

On a side note, my brother and his girlfriend came over and spent some time with us and we exchanged gifts. Now, we have two roomies left to exchange gifts with and that will be the end of Christmas at this house.

I spent all night pretty much vomiting up everything I ate. My stomach is spasming and contracting and it feels awful. Have you ever been so hungry that you've gotten cramps? Now, imagine those cramps plus someone sucker punching you in the gut and/or someone hitting a line drive into your stomach. I took a pain pill the doctor gave me (which I try to use sparingly because it causes gastric delays) and it's not even BEGINNING to touch the pain. It's my own fault but it was worth it. My friends made wonderful food and I was able to spend some time with them. I had to leave early so that I wouldn't get sick in front of them. Because when I start vomiting, it's hard to stop until all of the food/liquid is gone.

Well, I am going to go take more phenergan and bentyl. Hopefully, that will cut back the spasming and cramps. My throat is swollen from vomiting. It's like strep throat, I can barely swallow anything. It might be best if I could just go back to sleep.

Another Sleepless Night & Another New Symptom

I am so exhausted.

I can't sleep and all I can do is to curl up in a ball and whimper. The pain hurts. It's one huge spasm after another and the vomiting makes the pain worse. I'm pretty sure I pulled a muscle in my back vomiting this last time.

My fraternity's local alumni association had a holiday get together today. My husband is deeply involved in this organization and he's been here to support me, so I wanted to be there today to support him. The holiday get together was at a local soul food restaurant. Now, just the smell or image of food had me gagging this week, but I was determined that I was going to get through this lunch. I felt like I was marching to an execution and praying I didn't get sick at the restaurant. I took all of my medicine before I got into the car which includes Bentyl, Levsin, Zofran, Phenergan, Zanaflex, and my vitamins I've started taking. I added a multivitamin to the mix along with Vitamin B, because that was recommended to help my new symptoms of confusion. I've also been trying to add more potassium to my "diet."

I was quite proud of myself. I didn't get sick in the car and when I walked into the restaurant, the smell didn't knock me out like I thought it was going to. I managed to make myself eat a teaspoonful of dressing, two teaspoonsful of lima beans, and a few bites of banana pudding. After that, I was full. Also, a new symptom developed. Right after I ate, my belly started to swell. It looked like I was pregnant or that I had a balloon under my shirt. It was very uncomfortable and full of cramps. I actually had to change my pants later because they were too tight after I ate.

I managed to last the entire lunch without vomiting several times. I had to leave and get some air towards the end of lunch because the smells were making me extremely nauseated.

After getting into the car, the nausea became worse. Nothing helped. Not looking outside, not counting trees, not trying to relax, nothing. My stomach felt like someone was banging on it with a hammer. It was this intense, throbbing, sharp pain. It continued to do this until I got home. The spasms started happening and then I started vomiting. At least I had something in my stomach to vomit up, so it wasn't just stomach acid. My throat is still rather swollen from previous vomiting and it probably sounds and looks like I have strep throat.

I was up all last night vomiting and now I've been up all tonight vomiting. One of my friends said something, probably not meaning to be offensive but it came out that way, and I finally just broke down and cried. I sat there and cried for a good two hours. My wonderful husband, who lost his father this week, sat there and held me while I cried. He didn't ask what was wrong, he just stroked my hair. I felt so guilty because I feel like I should be comforting him, you know?

After crying, I vomited again. At this point, I left my bedroom to come upstairs to watch TV. I don't want to wake my husband up and my stomach isn't going to let me sleep anytime soon.

I managed to read all of, Gastroparesis: My Personal Journey and realized that I have the same symptoms. This isn't in my head. I can't tell you how many doctors have told me that the sickness is in my head and nothing more. I've had several friends remark about how strong I am but I don't feel strong. Then, I read something like this book and what this woman went through and it motivates me to be an advocate for myself.

I'm going to stick with facts and what I do know. I know that I vomit 6 to 8 times a day. I know that I'm dehydrated. I know that I'm still technically overweight but I've lost about 25 pounds since I was diagnosed. I've dropped a bra size and pants size. I can put two photos of me side by side from this year and last year and you can see that my face has thinned out considerably. I know that I look sick and that my skin is a weird pasty color. I know that if I make myself eat, even small and frequent meals (liquids), I will vomit.

I know that I can't leave the house without a a bucket of some sort to vomit in. I know that I have a year of college left and I'm not sure how I'm going to go to labs. I know my GI doctor doesn't know what to do for me at this point so he's referring me to the Mayo clinic. I know that I have mental confusion, depression, and my stomach becomes really swollen if I do manage to eat something. It doesn't matter what I eat, it all comes up. Liquids, solids, gluten free, gluten, etc. I've tried all of the different diets. I know that I'm scared (and I have a suspicion that I have an autoimmune disease at the heart of this problem - but I don't know what I've been tested for).

I also know that I am determined. I know that other GP fighters suffer worse than I do. I know I have loving family and friends who support me, even when I post six million times a day on Facebook to keep myself distracted. I appreciate all of the help my husband has given me and his support. Without him, I'm not sure I could do this. I know that I've found a wonderful support group online that has helped me so much with venting and answering most of my gastroparesis questions. Also, it makes me feel better to know that I'm not the only one.

I know that I'm going to keep fighting.

Sometimes I Just Want to Give Up

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

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

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

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

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

Post Implant Surgery & Updates

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

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

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

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

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

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

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

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

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

Well, enough about me for now.

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

Picture of my back after the stapes were pulled out.

Getting ready for the wedding and classing it up!

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

Motility Specialist Follow Up

I had an appointment at 8:30am this morning with the Specialist but let me give you some background on the past two days. I was up all night, really, really nauseated. I took my pain medicine and my anti-nausea medication but it did nothing to get rid the knot in my stomach. To explain how my stomach feels - imagine you're nervous before a test and your stomach is in a huge knot. Then, add an intense burning, sharp pain like you've been sucker punched in the stomach with an ulcer. Then, imagine that you had food poisoning and you just felt like there was a giant greasy ball just hanging out in your stomach. If you combine all of those feelings, that's how I feel on a daily basis with the nausea. That's the best way I know how to describe it.

So, I was up all night getting sick. I thought maybe the vomiting would help but my stomach managed to spasm enough that I pulled a muscle.

I had an appointment scheduled for the Motility Specialist, which was lucky, and got to go in this morning to talk with her about my Smart Pill results. She said that the Smart Pill did show a delay in my gastric emptying, confirming what I already knew, I have gastroparesis. She told me I needed to follow up with my GI doctor now, so I'm wondering what was the point of seeing the Specialist if she's not going to treat me for this rare condition.

She did prescribe an antispasmodic, which should help with the pain after eating. That's leftover from the ERCP that my regular GI doctor did. However, both doctors cannot explain the vomiting. The best theory that I have gotten is from my regular GI doctor - the food that I eat sits in my stomach for days until I get food poisoning and vomit it up. So, essentially, I always have food poisoning. I have to make an appointment with the Nutritionist and come up with a diet plan.

Vomiting is also my pain response, so I hope that once I get this trial for my knee, the vomiting will be cut in half.

The Specialist then told me to see my psychiatrist because I'm already on an antidepressant and anxiety medication. The drug to help treat this is also classified as an antidepressant. You can read about Nortriptyline HERE.

I called his office and I'm waiting for him to give me a call and let me know if he will prescribe it. I just saw him two days ago, and he knows about my gastroparesis. I don't think he'll have a problem prescribing it but I would like to start it as soon as possible since it takes a while to work. This should help with the gastroparesis, some. I don't understand why the Specialist couldn't just prescribe it. It's not controlled. I get the drug interaction thing but she knows ALL of the medications I'm on. Oh well, I'll wait around and see what my other doctor says.

So, that's my news. Gastroparesis is confirmed, which I already knew it would be. I've had the ERCP and I'm going to try this medicine. I would really like to have my normal life back. I miss being a social butterfly and I miss leaving the house.

My friends and family have been a great support network. I cannot tell you how much it means to me for the encouraging words, funny pictures to cheer me up, coming over to hang out because you know I can't leave the house. It really does mean so much to me. And of course, for reading my blog. I wasn't expecting for it to be as popular as it is. I just wanted to say thank you to everyone for being there for me. It really does make me feel better knowing that I have such great friends and family, and of course, a wonderful husband. I honestly could not get through this without you guys.

It's also nice to feel validated that this isn't all in my head. I've gotten that from a few past "friends." I felt isolated for a while because people viewed me as negative and attention seeking, but I know my body better than anyone and I'm glad I stayed persistent. I try not to be negative but I have bad days just like everyone else.

If there is anyone out there who reads this blog and has medical issues, my advice is to find a doctor who will listen. I cannot tell you how many bad doctors I've gone through until I found someone who understood and helped. Keep trying. I know it can be discouraging but you have to be your own advocate.

My doctor was right about starting this blog, though. It has helped me to get everything out and to channel those negative feelings into something positive for someone who may have the same issues I do without a diagnosis. I think my friends understand me better now, too. You can tell someone you're sick all day long and they'll get annoyed at you for always being sick, but you have to help them to understand. This doctor is the best doctor I've had yet and I'm glad that I finally know what's going on.

It's hard living with a chronic illness and it can get you down ... but be strong and fight back. I am going to. I am determined to lead a normal life again, and I will; one day at a time.