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Showing posts with label drug addict. Show all posts
Showing posts with label drug addict. Show all posts

Tuesday, April 9, 2019

Patient Profiling: Drug Seekers, Medical Slang, and Malpractice

I posted an article that made me extremely angry. You can read it here:

ADDICTS USING GASTROPARESIS IN ORDER TO ABUSE PRESCRIPTION DRUGS.

I have heard story after story from people with chronic pain, invisible illnesses, and issues that illustrate why it is terrible for healthcare professionals to make snap judgments. They treat chronically ill patients as drug seekers. It can be life threatening if healthcare professionals just write someone off as a drug seeker without evaluating them. I just want to ask the doctors, "do drug addicts not have medical emergencies, too?" Patient profiling has become a REALLY big problem in our healthcare system, as has the "opioid epidemic."

I have written two articles on chronically ill patients being treated as drug addicts, and you can find them here:

GASTROPARESIS PATIENTS VS DRUG SEEKERS.

INVISIBLE EMERGENCIES SERIES PART THREE.



First of all, let me define patient profiling. According to Kevin MD,

"Patient profiling is the practice of regarding particular patients as more likely to have certain behaviors or illnesses based on their appearance, race, gender, financial status, or other observable characteristics. Profiling disproportionately impacts patients with chronic pain, mental illness, the uninsured, and patients of color. Like racial profiling by police, patient profiling by physicians is more common than you think.

We rely on doctors to first do no harm–to safeguard our health–but profiling patients often leads to improper medical care, and distrust of physicians and the health care system, with potential lifelong consequences."





Image Source: HERE



Can You Sue A Doctor For Patient Profiling?



According to Find Law,


"By Ephrat Livni, Esq. on April 01, 2016 3:55 PM

Patient profiling is a term used to describe a kind of discrimination by doctors. When a healthcare provider treats a patient based on their "type" rather than assessing them individually, that is profiling, and it can lead to problems in treatment.

Doctors should assess each patient individually, but profiling alone is not likely going to be a basis for a lawsuit against a doctor or hospital, unless that profiling manifested in medical malpractice. So let's explore the distinction between profiling, which is certainly unpleasant, and negligence law, which is based on actual injury.



Patient Profiling Primer

Dr. Pamela Wible, writing for Med Page Today's blog, Kevin MD, discusses and defines patient profiling. She explains, "Patient profiling is the practice of regarding particular patients as more likely to have certain behaviors or illnesses based on their appearance, race, gender, financial status, or other observable characteristics."

"Profiling disproportionately impacts patients with chronic pain, mental illness, the uninsured, and patients of color. Like racial profiling by police, patient profiling by physicians is more common than you think," Dr. Wible writes. "Profiling patients often leads to improper medical care."

That is where profiling starts to meet negligence in medicine. But there is still a distinction, as a medical malpractice suit must be predicated on an injury or harm that is compensable.




Medical Malpractice

Medical malpractice is a form of negligence for medical professionals. Negligence in medicine manifests in errors in diagnosis, treatment, or illness management, for example.

If any of these are the cause of an injury to the patient and it can be proven that the doctor's failures led to it, and that there were no unforeseeable intervening causes, then you have proven part of a claim. You must also show and that this harm can be compensated.

Now, if a doctor's negligence arose as a result of patient profiling, and you were harmed then the doctor's profiling, to the extent it can be shown, will help prove your malpractice claim. But profiling and negligence are not the same and one does not necessarily lead to the other, although it may be a strong sign that malpractice will arise if you are profiled as a patient.



Talk to a Lawyer

If you were treated poorly by a medical professional and were injured as a result, speak to a lawyer. Many personal injury attorneys consult for free or a minimal fee and will be happy to assess your claim."








Image Source: HERE



Failed/Erroneous Diagnosis and Treatment



"We all tend to trust our doctors. After all, they’re the experts. Even though we have some of the best doctors in the world, even they can make a mistake. And these mistakes can be a lack of treatment or the wrong treatment. These can be confusing concepts, so here is a brief overview on failed or erroneous diagnoses and treatments in medical malpractice cases.



Medical Misdiagnosis Generally

In most cases, if a delay or failure to diagnose a disease has resulted in injury or disease progression above and beyond that which would have resulted from a timely diagnosis, medical professionals could be held liable. Most doctors are trained to think and act by establishing a "differential diagnosis." Doing so calls for a doctor to list, in descending order of probability, his or her impressions or "differing" diagnoses of possible causes for a patient's presenting symptoms.

The key question in assessing a misdiagnosis for malpractice is to ask what diagnoses a reasonably prudent doctor, under similar circumstances, would have considered as potential causes for the patient's symptoms. If a doctor failed to consider the patient's true diagnosis on his/her differential diagnosis list, or listed it but failed to rule it out with additional tests or criteria, then the doctor is likely able to be sued for medical malpractice.

However, this situation may be difficult to prove. For example, a patient may allege that a doctor failed to timely diagnose a certain cancer, resulting in "metastasis" (spread of the cancer to other organs or tissues). But experts may testify that "micrometastasis" (spreading of the disease at the cellular level) may occur as much as ten years before a first tumor has been diagnosed, and cancerous cells may have already traveled in the bloodstream and lodged elsewhere, eventually to grow into new tumors. Therefore, it may be difficult in some cases to establish that a patient has suffered a worse prognosis because of the failure or delay in diagnosis.




Failure to Treat and Erroneous Treatment

If a patient is treated for a disease or condition that he or she does not have, the treatment or medication itself may cause harm to the patient. This is in addition to the harm caused by the actual condition continuing untreated.

The most common way in which doctors are negligent by failing to treat a medical condition is when they "dismiss" the presenting symptoms as temporary, minor, or otherwise not worthy of treatment. This situation may result in a worsening of the underlying condition or injury, causing further harm or injury. For example only, an undiagnosed splinter or chip in a broken bone may result in the lodging of a piece of bone in soft tissue or internal bleeding caused by the sharp edge of the splintered bone.

Erroneous treatment is most likely to occur as a result of a misdiagnosis. However, a doctor who has correctly diagnosed a disease or condition may nonetheless fail to properly treat it. Other times, negligence is the result of a doctor attempting a "novel" treatment that fails, when in fact a more conventional treatment would have been successful.




Getting Legal Help with a Medical Malpractice Claim

Having an illness or injury is bad enough, without thinking our doctors made it worse. And it’s not always easy to know whether the professionals in charge of your medical care acted properly. If you would like to know more about your claim, you can contact an experienced medical malpractice attorney.





Medical Malpractice In-Depth


When illness or injury forces you to see a physician or go to the hospital, you can generally be assured that a medical professional's years of experience and training will result in excellent treatment. But in truth, medical care providers are only human, and errors are always possible. Medical malpractice occurs when a negligent act or omission by a doctor or other medical professional results in damage or harm to a patient. To get started with a medical malpractice case, read First Steps in a Medical Malpractice Claim. See FindLaw's Medical Malpractice section for more articles and resources.





Negligence by a medical professional can include an error in diagnosis, treatment, or illness management. If such negligence results in injury to a patient, a legal case for medical malpractice can arise against:

The doctor, if his or her actions deviated from generally accepted standards of practice;
The hospital for improper care or inadequate training, such as problems with medications or sanitation;
Local, state or federal agencies that operate hospital facilities.




Medical malpractice laws are designed to protect patients' rights to pursue compensation if they are injured as a result of negligence. However, malpractice suits are often complex and costly to win. Therefore, if you believe you have a medical malpractice claim, it is important to consult with an attorney who will discuss your case with you, and help you determine your best options.




Legislation Affecting Malpractice Actions

Due in part to the power and resources of health care industry lobbyists, many states have passed legislation making it more difficult to bring and prevail in medical malpractice actions. In most states today, physicians and hospitals are protected by legal limits, called "caps," on the amount of damages and attorneys' fees that can be awarded in malpractice suits. Also, most states have a two-year time limit for filing malpractice actions, unless extraordinary circumstances affect the case.

One obstacle plaintiffs in many states may have to overcome before they can even file a malpractice action against a health care professional is the requirement that they file what is commonly known as a "certificate of merit." In order to file a certificate of merit, a plaintiff will first have to have an expert, usually another physician, review the relevant medical records and certify that the plaintiff's health care provider deviated from accepted medical practices, which resulted in injury to the plaintiff. The plaintiff's attorney then files the certificate of merit, which confirms that the attorney has consulted with a medical expert and that the plaintiff's action has merit.




"Respondeat Superior" and Independent Contractors

Medical malpractice can be committed by several types of health care professionals and, in a case where a hospital employee commits malpractice, the hospital itself may be held liable under the legal doctrine of "respondeat superior." Under this theory, an employer may be held liable for the negligent acts of its employee if the employee was acting within the scope of his or her employment when the negligence occurred. This doctrine is very important to plaintiffs in medical malpractice cases, because it helps ensure there will be a financially responsible party to compensate an injured plaintiff.

In some situations, commonly involving attending physicians working in hospitals, health care providers are considered independent contractors rather than employees, which makes the doctrine of "respondeat superior" inapplicable. What this means is, if a doctor or other health care professional an independent contractor, and commits malpractice while treating a patient in a hospital, the hospital cannot be held liable for the doctor's negligence. However, the hospital can be held liable for its own negligence, for example, in granting attending privileges to an unlicensed or incompetent physician.




Seek Legal Help with a Medical Malpractice Attorney

It's not always easy to know how to pursue a medical malpractice case. A qualified medical malpractice attorney will be able to discuss the strengths and weaknesses of your case and help you get the compensation you deserve. A good first step is to contact a medical malpractice attorney."







Image Source: On Image. Doctors are scared to prescribe pain medications due to the rising number of deaths and pressure from above







According to Parent Professional,


"Have you ever heard of patient profiling? It takes place when medical–and mental health–professionals make an assumption about someone seeking care based on their appearance, race, gender, financial status or even the kind of illness they have, such as mental health or substance use problems. The first time I came across this was in an article written by Pamela Wible, MD (article below at the end of this article), who recounted patient stories where the personal judgment of a medical person resulted in poorer care. She worried that, similar to racial profiling by police, patient profiling is more common than we want to admit. And it undermines care.

When I first heard about patient profiling, I immediately thought of my younger son. A few years ago (when he was in his early 20s), he woke up on a Sunday morning with horrible vertigo, He couldn’t stand, couldn’t focus and couldn’t drive. I took him to the local emergency room where they asked a series of routine questions: Are you on any medication? (No.) Have you ever experienced this before? (No.) Have you had anything alcoholic to drink? (Yes, one beer last night with friends. I was the designated driver.) Unfortunately, the questions stopped after he said he had had that beer the night before. He was given intravenous fluids, allowed to rest and sent home. The next day, his very irate primary care doctor sent him to a different emergency room where he was treated for inflammation of the inner ear.

For my son, staff at the first emergency room decided that a young adult in his 20s experienced vertigo because he had been drinking. They made a snap judgment and his treatment was delayed. To this day, he feels a general mistrust of emergency room staff.

For children and youth with mental health needs and their families, patient profiling happens far too often. It happens in the emergency room and it happens in visits to medical specialists. One mom, whose daughter had both a diagnosis of depression and frequent migraines – for which she was seeing a specialist – waited four days recently in the emergency room because no inpatient beds were available. She was told that her daughter couldn’t receive migraine medication while waiting because that was drug seeking behavior And it was probably part of the bipolar anyway. The mother was frantic when she called us and very frustrated that her daughter’s care was all being lumped under mental health. She felt the emergency room staff had stopped their assessment of her daughter’s needs after they heard about the bipolar disorder.

This doesn’t just happen in emergency rooms. It happens with medical specialists who think that mental health concerns have caused medical symptoms. It happens when doctors call parents 'enmeshed' or 'co-dependent' and don’t see them as a resource and partner but instead as part of the problem. It happens when young people are seen as their diagnosis and not as a valuable self-reporter and critical thinker.

That said, there is a fine line between patient profiling that can help or harm. Doctors, nurses, therapists and other workers often form an initial impression based on their experiences or their training. They often need this starting point to determine a course of action. But – and this is the crucial piece – that starting point needs updating as new information comes in. A second impression or a third is often in order. When the initial judgment is incomplete or inaccurate and it is not revised, it can be harmful.

A cornerstone of good care is excellent communication. While this is often characterized as the doctor or medical professional communicating to the patient, it should be a two-way street. Mutual exchange of information is critical but so is mutual listening. In any human interaction, the only way we can truly connect is when we get past our snap judgments and see who is actually there.

When a child is in crisis or when her need for care is urgent, parents are rarely at their best. Most often, there have been many stressful days or weeks before this point which have worn them down. We rely on medical staff to see beyond the diagnosis to the whole child, teen or young adult. We trust them to see our commitment and strength in the midst of the frenzy. We hope they will see us as a key member of the team, not as a 'less than' parent to be held at arm’s length.

When this doesn’t happen due to patient profiling, we all lose."







Image Source: HERE




According to the Daily Mail,



"Medical jargon is pretty impossible for most patients to follow, but some of the terms you hear your doctor use may just be insulting industry jargon.

Over decades, doctors have ad-libbed a whole vocabulary to encode their frustrations with problem patients, communicate grim status updates, or even gossip about children.

In medicine, this slang is more than harmless insider-jargon: studies have shown that doctors' attitudes and discrimination toward patients can have a real affect on the treatment they receive and how well they recover.

Medical schools have begun to recruit more diverse students in the hopes of changing the field's culture, but several young doctors who wished to remain anonymous told Daily Mail Online that discriminatory terms are still common.

But discrimination is institutionalized and dangerous in medicine, according to Dr Peter Muennig and Dr Alex Green of Harvard University and Massachusetts General Hospital, and it's worth knowing some of these terms that doctors may use to mask the severity of a situation or downright insult you (warning: some of these are offensive).




GOMER

This 'classic' term stands for 'get [them] out of my emergency room.' It has been used in hospitals for decades and is familiar to just about every doctor working, Dr Muennig says.

The acronym is a sort of catch-all term for any of the kinds of patients doctors don't want to deal with.

'There's a certain level of discrimination against the chronically ill, and that's where GOMER comes from,' says Dr Muennig.

In a recent interview with Daily Mail Online, he also said that this term is often used particularly to describe people who physicians suspect are hunting for pain medication.





Frequent fliers

Patients may return to the hospital week after week - or even day after day - for a variety of legitimate or illegitimate reasons, earning them the title 'frequent fliers,' but certainly no points from doctors.

Chronically ill patients with conditions like diabetes must make regular appointments for dialysis.

Other patients become common faces in emergency rooms and clinics because of their hypochondriacs tendencies, constantly sure that they are gravely ill.

Still other patients may just be looking for a drug fix, coming in with complaints of chronic pain, or in hopes that the physicians on shift will be more willing to prescribe than yesterday's were.

'It's most often used to talk about people with severe diseases like diabetes, or renal failure and diabetes,' says Dr Muennig.





FLK

Doctors use this cruel acronym for 'funny looking kid' to describe 'those babies who are "syndromic" or [we can tell] something is wrong with them based on how they look,' a Chicago doctor told Daily Mail Online.

Children born with any of the three trisomies - genetic mutations that cause there to be an extra copy or partial copy of a chromosome - often have distinct appearances.

These disorders include Down syndrome, which is typified by a flattened face, smaller head and ears than normal and upward slanting eyes.

Doctors also use the FLK to describe babies that don't have a clear diagnosis, but whose 'abnormal' appearance suggests that there may be something wrong with them.





Crumping

Not to be confused with the dance style, doctors use 'crumping' when they have a patient that is 'crashing, but not aggressively,' the Chicago doctor told Daily Mail Online.

The phrase is synonymous to 'circling the drain.' Rather than their organs suddenly failing - or crashing - these patients are deteriorating quickly, and often don't have much chance for survival.

'I don't think it's necessarily harmful to say "crumping" or "frequent flier,"' a New York-based doctor said, 'but I'm very careful as a physician to not use those words in earshot of a family, that would be strongly unprofessional.'





Total body dolores

Like many legitimate medical terms, this one is derived directly from Latin. 'Dolores' translates to pain so this 'literally means total body pain,' the doctor says.

The phrase is most often used between doctors, to describe a patient, as in, 'I have a total body dolores in room 109.'

He says he's seen this term used commonly to describe Latino patients in particularly. 'These patients can be very nervous,' he says, in part because English is often their second language, making the hospital and medical-speak even more frightening, 'and their anxiety manifests physically.'

Slang is used 'commonly with people of color, people using drugs,' he says. More common phrases like '"crack head" are commonly heard on the ward too.'

Although 'doloroes' means pain in Latin, a rather medical language, it means the same thing in Spanish, as well as being a woman' name. This all adds up to maximize confusion for patients.




Status dramaticus

A patient earns the title 'status dramaticus' when they are a '10/10 [for pain] always, although they look fine,' the Chicago doctor says.

'This is someone that wails shrieks, howls so loudly you can hear them from the hallways. Everything hurts and they make sure you know about it,' he says.

The problem with doctors using terms like status dramaticus, says Dr Alex Green, 'is that they're dealing with people who are sick, physically and sometimes mentally and these [dismissals] can be more directly harmful.'





WWWS

The acronym for 'wealthy white woman syndrom ' is 'actually bad because it's a term that is used when you're frustrated at specific patients and dismissing their symptoms,' says Dr Lisa Wang, a psychiatry resident in New York.

Research has documented that physicians are more likely to take women's pain less seriously than they would a man's. There is a widely held belief - though studies turn up mixed results - that women's bodies are designed for childbirth and their pain thresholds are higher.

A 2008 study from the National Institutes of Health also found that women wait 16 minutes longer to be seen in an emergency room than men do.

'As medical providers, on an unspoken level, I think [using these terms] is a coping mechanism, to make light of really difficult situations,' Dr Wang says.





HHS and Aye-aye-itis

Discrimination against people of color and those for whom English is a second language is rampant, as evidenced by the terms 'hysterical Hispanic syndrome' and aye-aye-itis.

'I hear "aye-aye-itis" used for a Hispanic patient who has many somatic complaints, none of which are related to their surgery or main problem, usually accompanied by "aye, aye,"' the Chicago doctor says.

'Language barriers are a big discriminatory factor,' says Dr Green.

'There's an attitude of "oh, another patient that doesn't speak English, why don't they learn, it makes our lives so difficult,' says Dr Green, who has worked on initiatives to educate hospitals on language barriers and introduce interpreters.

'I roll my eyes every time I hear that [kind of term]' says a New York doctor. 'I call it out because it gets at the rampant cynicism to the job.'

In one Harvard study, 20 percent of a group of 8,000 Latino people reported experiencing discrimination at a health care facility or clinic.




Slugging

'A slug is someone who is reluctant to get up out of bed after surgery,' says the Chicago doctor.

'They tend to be slow, in pain, and want to stay "one more day longer, please,"' he says.

On one hand, 'poor effort,' as he calls it, can have a negative impact on the quality and timeline for recovery, but there is a darker side to this tendency too.

A hospital bed might be the safest and most certain place some patients can stay, especially for those who are not financially secure or may be struggling with addiction.

'When you have patients showing up drunk every single night, always overdosing, not taking their blood pressure medications and coming in because of it, it becomes easy to blame patients, though I don't think you should,' says one New York doctor.

Dr Green says that 'a lot of it derives from [doctors'] systemic frustrations with the medical system back-firing back onto patients.'"




I have written a companion article with ALL of the medical slang, acronyms, etc. all on its own, because there is SO much of it. You can find the article: http://www.emilysstomach.com/2019/04/patient-profiling-medical-slang-only.html



Image Source: HERE






According to Pamela Wible MD,


"Patient Profiling: Are You a Victim?


We rely on doctors to first do no harm–to safeguard our health–but profiling patients often leads to improper medical care, and distrust of physicians and the health care system, with potential lifelong consequences. For the first time, people share their stories:

'I was once denied pain meds after a fall off a 10-foot porch by the same doc who gave my pretty female friend pain meds after getting two stitches in her finger. I felt like my appearance had something to do with it.' ~ Jay Snider

'In 1986 I was in a motorcycle accident. I tore up my face on the road. I was taken to the ER and treated like crap because I had no insurance. They cauterized my facial wounds rather than stitch me up, and then dumped me on the sidewalk with amnesia. I still have distinct black scars; people think they’re tattoos. I went into collections and it took years to pay that one off. Six weeks ago, I fell while trimming a tree. When the ER found the insurance card in my wallet, I was treated like gold.' ~ James Cummings

'As a teen, I fractured my nose. Many sinus issues later, I consulted an ENT specialist. He insisted that I damaged my sinus passages by using cocaine. His assumptions caused me pain, humiliation, confusion, and anger. I repeatedly assured him that I wasn’t a user. Two surgeries later, my septum was removed. Afterwards, he was so cruel as to continue his tirade about my cocaine use. As the gauze was being removed from my nose, I fainted. When I was roused, he insisted that I leave immediately showing no concern about whether I could even make it home safely.' ~ Lonnie Stoner

'It was 1975. I was 23 and I’d been on the pill for 4 years, but I became concerned about potential negative side effects of long-term hormonal manipulation. So I researched other contraceptives and felt the diaphragm was the simplest and safest option for me. When I went to the county clinic to get fitted, I explained what I’d researched to the doctor. He scoffed at my concerns, urged me to stay on the pill, and disputed any potential negative consequences. He reminded me that taking a pill each day was SO much easier than having to be responsible for using the diaphragm properly. It was clear he thought I was too young and clueless to make this decision about my own reproductive health care. Although he tried to dissuade me from switching to a diaphragm, I insisted that’s what I wanted, and he finally fitted me for it. After he left the room, the nurse said, ‘Don’t worry, dear; it’s quite easy to use. I’ve been using one for years with no problems. It’s a good choice for you to make!’ It was clear she didn’t approve of his patronizing attitude either.' ~ Patsy Raney

'I injured my back at work. I couldn’t get time off, so my family doc prescribed pain meds so I could get through the day and Xanax for sleep. I returned every six months for two years and he always accused me of taking more than I was prescribed. He got progressively more rude and angry. I brought my wife with me to see if I was imagining it. She witnessed it too, so we searched for another doctor. I asked my new doctor to taper me off of the pain meds and Xanax so I could try medical marijuana instead. He was skeptical. He told me to go to the pain clinic. I’d gone there once before and was treated like a criminal. I didn’t want to go there! So he wrote up a contract that said I would agree to take pain meds and Xanax and I’d be drug tested monthly to make sure that I wasn’t using medical marijuana. When I told him I wouldn’t sign the contract, he told me to find another doctor. This was at a critical time when I needed real help and was worried about taking the meds for over two years.' ~ Carl Williams

I’ve been a doctor for 20 years. I thought I’d seen it all. Drug addicts have altered my prescriptions, even forged my name. Patients have lied to me. Many haven’t followed my treatment plans. Some have died as a result. Still, I try to treat everyone fairly and with respect. But now I’m wondering, “Have I ever profiled a patient?” I bet I have. So on behalf of my colleagues and myself, I’ve got a message for any patient who has ever been misjudged or mistreated:





Image Source: In Article


Special shout out to Chriss for her help.



Wednesday, January 18, 2017

Mental Health and Gastroparesis: Weight Gain & Anxiety

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






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






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

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


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

MY STORY SO FAR PART 1

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

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

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

MY STORY SO FAR PART 2

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

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

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

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


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





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

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

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

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

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



Cheryl's Story:






Shannon's Story:

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

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

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


This is Christy's Story:

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

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

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

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

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

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

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