Patient Rights & Patient Advocacy

As a patient, you do have rights and responsibilities when it comes to the doctor's office or the hospital. I have written about this previously, but I wanted to dedicate an article to it so that you would be aware of your rights the next time you are in a medical professional setting.


Dedicated to: Anastacia

Image Source: http://www.mnhsc.com/patient-rights-and-responsibilities/



Emily's Stomach GP Podcast is available to listen to and my co-host and I have discussed this topic, if you are interested in listening.





According to the AMA (American Medical Association),

"Code of Medical Ethics Opinion 1.1.3

The health and well-being of patients depends on a collaborative effort between patient and physician in a mutually respectful alliance. Patients contribute to this alliance when they fulfill responsibilities they have, to seek care and to be candid with their physicians, for example.

Physicians can best contribute to a mutually respectful alliance with patients by serving as their patients’ advocates and by respecting patients’ rights. These include the right:

(a) To courtesy, respect, dignity, and timely, responsive attention to his or her needs.

(b) To receive information from their physicians and to have opportunity to discuss the benefits, risks, and costs of appropriate treatment alternatives, including the risks, benefits and costs of forgoing treatment. Patients should be able to expect that their physicians will provide guidance about what they consider the optimal course of action for the patient based on the physician’s objective professional judgment.

(c) To ask questions about their health status or recommended treatment when they do not fully understand what has been described and to have their questions answered.

(d) To make decisions about the care the physician recommends and to have those decisions respected. A patient who has decision-making capacity may accept or refuse any recommended medical intervention.

(e) To have the physician and other staff respect the patient’s privacy and confidentiality.

(f) To obtain copies or summaries of their medical records.

(g) To obtain a second opinion.

(h) To be advised of any conflicts of interest their physician may have in respect to their care.

(i) To continuity of care. Patients should be able to expect that their physician will cooperate in coordinating medically indicated care with other health care professionals, and that the physician will not discontinue treating them when further treatment is medically indicated without giving them sufficient notice and reasonable assistance in making alternative arrangements for care."

According to CFGAI Endo Services,

"Patient Responsibilities

IN ADDITION TO PATIENT RIGHTS, A PATIENT ALSO HAS CERTAIN RESPONSIBILITIES. THESE RESPONSIBILITIES ARE PRESENTED TO THE PATIENT IN THE SPIRIT OF MUTUAL TRUST AND RESPECT.

The patient has the responsibility to provide accurate and complete information concerning his/her present complaints, past illnesses, hospitalizations, medications (including over the counter products and dietary supplements), allergies and sensitivities, and other matters relating to his/her health.


The patient and family are responsible for asking questions when they do not understand what they have been told about the patient’s care or what they are expected to do.


The patient is responsible for following the treatment plan established by his/her physician, including the instructions of nurses and other health professionals as they carry out the physician’s orders.


The patient is responsible for keeping appointments and for notifying the facility or physician when he/she is unable to do so.


The patient/family member/patient representative is responsible for disposition of the patient valuables.


Provide a responsible adult to transport him/her home from the facility and remain with him/her for a period of time designated by his/her physician unless exempted from that requirement by the attending physician.


In the case of pediatric patients, a parent or guardian is to remain in the facility for the duration of the patient’s stay in the facility. The Center does not see patients under the age of 16 years.


The patient is responsible for his/her actions should he/she refuse treatment or not follow his/her physician’s orders.


The patient is responsible for assuring that the financial obligations of his/her care are fulfilled as promptly as possible.


The patient is responsible to inform the facility whether the patient has a living will, medical power of attorney or other directive that could affect his/her care.


The patient is responsible for being respectful of all of the health care providers and staff, as well as other patients."

Patient Advocates

Image Source: HERE

Image Source: HERE





According to The Institute of Medical Care Improvement,

"Role of the Patient Advocate

A time of illness is a stressful time for patients as well as for their families. The best-laid plans can go awry, judgment is impaired, and, put simply, you are not at your best when you are sick. Patients need someone who can look out for their best interests and help navigate the confusing healthcare system–in other words, an advocate.






What is a patient advocate?

An advocate is a “supporter, believer, sponsor, promoter, campaigner, backer, or spokesperson.” It is important to consider all of these aspects when choosing an advocate for yourself or someone in your family. An effective advocate is someone you trust who is willing to act on your behalf as well as someone who can work well with other members of your healthcare team such as your doctors and nurses.


An advocate may be a member of your family, such as a spouse, a child, another family member, or a close friend. Another type of advocate is a professional advocate. Hospitals usually have professionals who play this role called Patient Representatives or Patient Advocates. Social workers, nurses and chaplains may also fill this role. These advocates can often be very helpful in cutting through red tape. It is helpful to find out if your hospital has professional advocates available, and how they may be able to help you.






Using an advocate – getting started

Select a person you can communicate with and that you trust. It’s important to pick someone who is assertive and who has good communication skills. Make sure that the person you select is willing and able to be the type of advocate that you need.

Decide what you want help with and what you want to handle on your own. For example, you may want help with:

Clarifying your options for hospitals, doctors, diagnostic tests and procedures or treatment choices

Getting information or asking specific questions

Writing down information that you receive from your caregivers, as well as any questions that you may have

Assuring that your wishes are carried out when you may not be able to do that by yourself.

Decide if you would like your advocate to accompany you to tests, appointments, treatments and procedures. If so, insist that your doctor and other caregivers allow this.

Be very clear with your advocate about what you would like them to know and be involved in—Treatment decisions? Any change in your condition? Test results? Keeping track of medications?

Let your physician and those caring for you know who your advocate is and how you want them involved in your care

Arrange for your designated advocate to be the spokesperson for the rest of your family and make sure your other family members know this. This will provide a consistent communication link for your caregivers and can help to minimize confusion and misunderstandings within your family.

Make sure your doctor and nurses have your advocate’s phone number and make sure your advocate has the numbers for your providers, hospital and pharmacy, as well as anyone else you may want to contact in the case of an emergency."

Image Source: HERE








According to The Patient Advocacy Foundation,

"Nancy Davenport-Ennis, Founder of Patient Advocate Foundation became involved in legislative reform on behalf of cancer patients while a dear friend of hers, Cheryl Grimmel, was battling both breast cancer and her insurance company. As Cheryl valiantly fought her fight, Nancy volunteered with the Virginia Task Force for Insurance Reform - sharing the previously underrepresented patient’s perspective and fought to reform insurance coverage for cancer patients. Victory for the task force came with the passage of Virginia House Bill 240 sponsored by Delegate Mary T. Christian in 1994.

Cheryl lost her battle with breast cancer in December 1994, and on the night of her funeral, as the rest of the world was ringing in the New Year, Nancy and Jack Ennis wrote business plans for two complementary nonprofit organizations geared towards solving the issues faced by patients like their friend Cheryl. National Patient Advocate Foundation (NPAF) and Patient Advocate Foundation were born in concept that night and became a reality shortly thereafter.

Cheryl's strength in the face of her battle serves as an inspiration to those at Patient Advocate Foundation as they work and interact with patients in need.

Our case managers advocate and mediate on behalf of patients to provide avenues of access for therapies, therapeutic agents and devices deemed medically efficacious by the medical and scientific communities while working to find sources of reimbursement to pay for care.

n the summer of 2013, after founding and serving as CEO for both PAF and NPAF for more than 17 years, Nancy Davenport-Ennis stepped away from the day-to-day management of both organizations, remaining as Chair Emerita. In July 2013, Alan Balch Ph.D. was named Chief Executive Officer, and is responsible for the operation and leadership of both organizations.

Today, both NPAF and PAF are national leaders on the forefront of important issues within patient-focused healthcare and serve as the voice of patients in need. At the helm are an Executive Board, Scientific Advisory Committee, and Honorary Board - all made possible by support from our Partners in Progress and generous community donors."

On their website they have a lot of resources to help you if you need help with insurance, loans, and that sort of thing,

"Case Management Services & MedCareLines

When PAF originally opened its doors in 1996, it did so offering one-on-one personal advocate services to patients battling serious disease. Today personalized case management remains core to what we do for patients. These services are provided individually to those patients that are facing a chronic, life-threatening or debilitating diagnosis, and the caregivers and providers that are working on behalf of a patient. Just like on that first day, PAF's case management services are provided at no cost to patients in need."

Image Source: HERE






According to The AdvoConnection,

"What’s the Difference Between Hospital Patient Advocates and Independent Advocates?

Posted by: Trisha Torrey


Francine reports:

After my husband Leonard had surgery last week, he stayed in the hospital four more days. I stayed by his side as much as I could and waited every day for the surgeon to check on him. I had a million questions! But I never saw the surgeon again once the surgery was over.

I waited patiently for the first day after the surgery. No surgeon. I called the surgeon’s office and they would not make an appointment for me, or even promise he would return my call, because it was my husband who had the surgery; they told me I would just have to hope to catch him when he visited my husband, which he would do once each day my husband was in the hospital.

I asked the nurses when the surgeon would come by. They told me he stops in every morning around 6 AM. So I got to the hospital by 5:45 – and they told me I had just missed him. I would give the hospital nurses my questions and they would give them to the surgeon, but I never got the answers.

Finally, the nurses suggested I go see the hospital’s patient advocate and tell her I wanted to see the surgeon – so I did. She was very pleasant, and tried to be helpful. She told me she would try to get the surgeon to contact me but that he had a reputation for avoiding patients’ family members. No promises. And still no surgeon.

I am furious! I was never able to get my questions answered, and now my husband has an appointment for follow up – and I don’t know how I’ll keep my mouth shut when we get to the appointment! He has had all kinds of problems since the surgery, and I don’t feel as if he got the care he needed because I wasn’t allowed to ask questions.

Unfortunately, Francine’s story is repeated hundreds (or thousands) of times a day. The details vary from patient to patient, but the part we’re going to focus on here is – how helpful could the hospital’s patient advocate be? And what could Francine have done differently?

In recent years, hospitals have begun stepping up their games to improve the patient’s hospital experience because Medicare’s rules changed, tying patient satisfaction to hospital revenue. I have my own opinions on how they have done that (As in – hospital experience just means a different kind of marketing. “Let’s improve the food, then patients won’t complain as loudly when no one answer the buzzer!) One way to improve the patient’s experience is to be sure there is someone who can listen to complaints. That person would be the hospital’s patient advocate.

Further, the Joint Commission, which is the accreditation body for hospitals, requires a patient advocate be available at all times in a hospital. These patient advocates have different names in different systems: patient advocates, patient representatives, care managers, ombudsmen… They are all tasked with assisting the hospital’s patients and their loved ones.

These patient advocates have become the customer service department with a twist.

Before I explain that twist to you, let me make sure you understand something important: hospital patient advocates do what they can to help their 'customers.' They are a good liaison to the hospital, and to the hospital’s medical and financial personnel. They can often run interference, mediate, or satisfy a complaint about the hospital. Knowing the constraints they are under, I have a lot of respect for these hospital customer service folks.





So What’s the Twist?

But that’s where the twist comes in. That is, that in most cases, the hospital’s patient advocate works for the Risk Management Department of the hospital. Let me repeat that: the patient advocate works for the hospital (meaning, not for you!) and in the vast majority of hospitals in the US, works for the Risk Management Department – which is the legal department. Risk Management is the euphemism for “make sure we don’t get sued.” In other words, the patient advocate is only there to cover the backside of the hospital. If they happen to help a patient or two along the way – well then – that’s nice, too.

What does this mean to you?

When the hospital’s patient advocate couldn’t get the surgeon to answer Francine’s questions, then Francine had only one recourse: an independent, private patient advocate. The hospital advocate’s allegiance meant she could not cross that line – the line that was so necessarily crossed to “encourage” the surgeon to connect with Francine.

The Allegiance Factor is an important concept – the point of today’s post. When an advocate is employed by a hospital, or by an insurance company, and because they have a financial stake in your care, then they cannot and will not be able to provide all the help you need because their allegiance is to their employer. That’s why Francine wasn’t able to get the answers she needed; because the advocate could only push so far without endangering her own job knowing the surgeon would subsequently have taken it up with her bosses in the Risk Management Department.

On the other hand, the independence of a private advocate means she isn’t trying to cover anyone else’s backside except YOURs because she works directly for you – her allegiance is solely focused on you.

If you or a loved one is hospitalized and you don’t seem to be able to get the service you need or your questions answered, then by all means, start with the hospital’s patient advocate.

But if you’re smart, you’ll have already hired an independent advocate to be part of your team. If you need answers or action, then it will be the allegiance of your private advocate who gets them answered."

Image Sources: HERE










According to Peacehealth,,

"Health Information Library



What Is a Hospital Patient Advocate? (00:01:33)
Video Transcript

Having to stay in the hospital can raise a lot of questions.

Questions about a health problem ... treatments, tests, equipment, medicines, bills, who does what ... the list goes on.

And the hospital staff does its best to answer your questions.

Everyone wants to help out ... whether it's an X-ray technician, a nurse, or your doctor.

But sometimes, you don't get as much information as you'd like ...

... or maybe you don't agree with something.

The hospital knows that these things happen sometimes.

And that's why it has someone ... the hospital patient advocate ...

to help you when you're not getting the answers you need.

The patient advocate helps make your voice heard ...

and works with other staff members to take care of questions and problems.

This can be before, during, or after a hospital stay.

Here are some examples of situations where an advocate could help.

You've been waiting all day for a test result. Now it's early evening.

You've asked several people about your test result, but you haven't received it yet.

Or let's say you want to know what each of your medicines is for, but ... after talking to the nurse several times, it's still not clear to you.

Or maybe you and your family don't understand your doctor's treatment plan, and you can't get the answers you need.

Your hospital staff wants to help. But when there's a problem ...

and you feel frustrated or lost ... it's important to take charge of your health and ask for the hospital patient advocate.

Current as of: December 13, 2018

Author: Healthwise Staff

Medical Review:Catherine Devany Serio, PhD - Psychology, Behavioral Health & Kathleen Romito, MD - Family Medicine & Adam Husney, MD - Family Medicine



This information does not replace the advice of a doctor. Healthwise, Incorporated disclaims any warranty or liability for your use of this information. Your use of this information means that you agree to the Terms of Use and Privacy Policy. Learn How this information was developed.

To learn more about Healthwise, visit Healthwise.org.

© 2011-2019 Healthwise, Incorporated. Healthwise, Healthwise for every health decision, and the Healthwise logo are trademarks of Healthwise, Incorporated.

PeaceHealth endeavors to provide comprehensive health care information, however some topics in this database describe services and procedures not offered by our providers or within our facilities.

Health Information Library

Terms & Conditions Privacy Rights & Practices PeaceHealth Home For Employees For the Media For Vendors

[+/−] Feedback

© 2019 PeaceHealth. All rights reserved."

Here are some more tips:



https://medlineplus.gov/patientrights.html

https://www.hhs.gov/answers/health-care/what-are-my-health-care-rights/index.html

https://www.who.int/genomics/public/patientrights/en/

http://www.nationalhealthcouncil.org/resources/nhc-publications/principles-patients-rights-and-responsibilities

https://www.emedicinehealth.com/patient_rights/article_em.htm

https://www.verywellhealth.com/patients-rights-2615387

http://www.mnhsc.com/patient-responsibilities/

http://www.mnhsc.com/patient-rights-and-responsibilities/

Take Action: For Many Patients and Their Families, Advocacy is About Helping Themselves and Others

I did NOT write this but this article has a lot of great information in it and I wanted to hang on it it later, to use for research regarding advocacy. I like having all of my sources and things together.


(http://journals.lww.com/neurologynow/Pages/articleviewer.aspx?year=2016&issue=12010&article=00019&type=Fulltext)

By: Kunkle, Frederick

"Karen J. Smith started a support group for people with Parkinson's disease after she was diagnosed with the condition at age 42. When Michael Ellenbogen learned he had an early-onset form of dementia at 49, he used social media to build a community of people interested in finding a cure for Alzheimer's disease. After Catherine (Cathy) DeCreszenzo's husband, Joe, was diagnosed with spinocerebellar ataxia, a rare neurodegenerative disease that causes spastic body movements and problems with balance, she started educating herself about the disorder so she could help him and others. And since her diagnosis of amyotrophic lateral sclerosis (ALS) 19 years ago, Catherine G. Wolf has initiated research projects and fought on behalf of people with disabilities. These four people, and hundreds like them, choose to cope with their diseases by taking action. Whether they're raising awareness or money, participating in clinical trials, providing support, or pressuring politicians, advocates help bring about change that could benefit themselves, their families, and perhaps thousands of other people, now and in the future. Their firsthand experience of living with a neurologic condition gives them a unique perspective.

'Our whole mantra is we need people with the disease out in front,' says Veronica “Ronnie” Todaro, MPH, vice president of national programs at the Parkinson's Disease Foundation. 'It's a core philosophy of the foundation. 'For those who feel called to do more but don't know where to start, we asked patients and their families to trace their paths to advocacy.'

Picture taken from IMGUR.



START WITH YOURSELF

Advocacy begins at home, says Todaro. 'People who make the best advocates are those who have advocated for themselves first,' she says. 'It's hard to help others without your own plan in place.' The first step is to be as educated about your disease as possible. Then work with your doctor and support team to come up with treatment and care that ensures your quality of life. Don't be afraid to ask your doctor or medical team questions, and persist until you get answers, she says.That was an important lesson for the DeCreszenzos. In their search for the right neurologist for Joe, they were uncompromising about finding an expert who was committed to fighting on their behalf. They chose Joseph M. Savitt, MD, PhD, a neurologist at Johns Hopkins University in Baltimore, for his warm demeanor and willingness to answer questions at any time without sugarcoating, says Cathy.




FIND STRENGTH IN NUMBERS

By joining a support group, people often find the courage to speak louder for themselves and others. It emboldened the DeCreszenzos to start their own support group in Newark, DE. When Joe was first diagnosed with ataxia, the couple traveled to Chesapeake, MD, to join a group sponsored by the National Ataxia Foundation. In the early days, the group was especially important because ataxia is extremely rare, Cathy says. Only about 150,000 people in the United States are known to have the condition. Just talking with others fighting a similar disease was helpful, she says. 'They tell you about their challenges, you tell them about yours. You compare notes and see if you can help each other.' Smith, 56, who was diagnosed with Parkinson's disease about 14 years ago after she noticed a tremor in her left ring finger, kept quiet about her disease initially. 'I didn't want people to know I had it,' she says.

Her advocacy work began when she formed a support group. From there she established a walk to raise awareness about the disease. She took out books at her local library and asked librarians to put up displays about the disorder. She signed up for newsletters and attended conferences when she could, and she even visited the US Food and Drug Administration (FDA) to learn more about the drug approval process. She joined clinical trials. With every step she became more confident and less depressed, she says. 'By becoming involved, I think I'm making a difference in people's lives. I can say, ‘I know what you're going through. You'll make it.’”

Found at: http://datab.us/Search/Gastroparesis.



RAISE YOUR HAND

Volunteering was another crucial step on the DeCreszenzos' path to advocacy. Together, Joe and Cathy have organized fundraisers, including one in September that raised more than $10,000 for research. Joe, 67, now serves on the National Ataxia Foundation's board of directors. Along the way, Cathy, 60, says she discovered new strengths. 'Asking for money comes very easily to me because I know it's needed,' she admits. 'Being an advocate helps me deal with what's happening to my family. Every year I get stronger.' The cause has taken on new urgency for the DeCreszenzos since learning that Joe's ataxia is hereditary and one of their daughters has tested positive for the disorder.





JOIN A TRIAL

Besides contributing to research that could lead to a cure or better treatments, participating in a clinical study gives advocates credibility to encourage others to join. The Parkinson's Advocates in Research program, created by Todaro, looks for individuals who have participated in studies. It has trained more than 230 people with Parkinson's disease or their caregivers on how to guide researchers and find ways to work together in the search for a cure. Many advocates who work with the foundation have been in dozens of clinical trials. 'It's taking control of your disease,' Todaro says. 'It's saying, ‘I can play a role in making things better.’'If you participate in a clinical trial, use that opportunity to establish a relationship with the scientists, investigators, and institutions involved. These people are often in the best position to effect change. Being able to communicate concerns also helps ensure that studies focus on the right issues and that researchers design them to be effective and humane,' Todaro says. In September, for example, Parkinson's disease advocates met with the FDA to highlight symptoms and side effects of the disease for which no treatments currently exist, she says.





GET TRAINING

To hone your skills as an advocate, reach out to the national organization for your disorder. The Parkinson's Disease Foundation, for example, has a nationwide program, the People with Parkinson's Advisory Council (PPAC), to identify advocates and leaders, evaluate their abilities and talents, and provide further education and training to support their public advocacy. The council's 14 members serve as advisors on the foundation's research, education, and advocacy programs.

Taken from IMGUR.





GO PUBLIC

For some, the logical extension of their advocacy is speaking to the public, either through media interviews, public forums, or in front of Congress. That's where Ellenbogen, 57, ended up after first establishing a presence on LinkedIn, where he ultimately connected with 6,000 people who could help him understand Alzheimer's or work toward a cure. Ellenbogen, who has lived with the disease for eight years, has worked hard to ensure that the testimony of people with dementia is included in public forums and panels.Ellenbogen's dedication to speaking out earned him an invitation to the World Health Organization forum in Geneva in March 2015; he was the only person with dementia attending who was not there as part of an organization. His letters have been included in the Congressional Record, and he received an appointment to the Pennsylvania Alzheimer's Disease State Planning Committee. 'You're going to get a lot of people telling you ‘no’ and ‘it can't be done.’ You go around those people. You find a way. Don't accept it when someone tells you it can't be done,' he says.






BUILD MOMENTUM

When his mother-in-law was diagnosed with Alzheimer's disease, George Vradenburg, former chief counsel for AOL, started by educating himself about the disease. Then he hosted a gala dinner for the local Washington, DC, chapter of the Alzheimer's Association. As the circle of invitations grew wider, the gala became national. Vradenburg, who was accustomed to moving among the business and political elite of DC, teamed up with former House speaker Newt Gingrich to create a national Alzheimer's study group. Established with the bipartisan support of the Congressional Task Force on Alzheimer's Disease, the group, which included former Supreme Court Justice Sandra Day O'Connor, was charged with developing a coordinated national plan to fight the disease.Still frustrated that not enough was being done, Vradenburg and his wife, Trish, a writer and former journalist, formed USAgainstAlzheimer's in 2010. The philanthropic group has pushed the federal government to adopt timetables for finding a cure or better treatments and has set its sights on accelerating the drug approval process.





ESTABLISH A CHARITY

The impulse to start a foundation or charity is often strong after a devastating diagnosis or event, but Vradenburg suggests that you first think about what you hope to accomplish. Large donors might fund a building for research or back a team of researchers. Others might choose to focus on caregiving, which could mean donating to a specific facility or to research on caregiving, such as using music to alleviate the symptoms of dementia. “Find your purpose. It's not enough to say, ‘I want to cure Alzheimer's,’” Vradenburg says. “Of course you do. Focus on a piece of the issue that matches your budget and fits your passion and where you can have the biggest impact.”

This was found a Google Image search because I wanted people to understand what it's like to have GP.

This was shared to me by a friend and I love what it says.





PLAY TO YOUR STRENGTHS

Wolf, who was at the top of her field in research psychology when she was diagnosed with ALS in 1996, says the will to keep going helped in her legal fight against an insurer that denied her home care 10 years ago, and it's what recently drove her to help revamp the Westchester Library System's website so it's easier for people with disabilities to use. An expert on interaction between humans and technology—she once worked at IBM's Thomas J. Watson Research Center—Wolf, now 68, continues to conduct research on how people with disabilities interact with computers. She also writes articles about living with ALS and posts disability news to her Facebook page. She types by raising and lowering her eyebrows to trigger a computer switch inside a headband.





EVERY STEP COUNTS

Advocacy isn't just about grand gestures. It can be as straightforward as ensuring that the local library has displays or pamphlets about your disease. Or trying to establish a commemorative month for a particular disorder. Or signing an email petition.As Ellenbogen says, anyone can be an advocate. 'If you write a letter to Congress once in a while or reach out to people in some small way to change attitudes, you're still being an advocate,' he says. Vradenburg agrees. Just the act of acknowledging the disease, which isn't always easy given the stigma associated with some neurologic conditions, is a big and brave first step, he says. 'Telling your story has an effect on the person hearing that story. It also has an effect on the person telling the story,' says Smith. 'I wasn't an advocate on day one or day 100. It took me several years. Now it's what makes my life meaningful. The day I stay home is the beginning of the end. I'll rest when I can't get out of bed.'
© 2016 American Academy of Neurology"

I borrowed this from GPACT, because this image is right.



If you want to be an advocate, it is going to take a lot for to work towards it. It means spending a lot of your hours and free time researching things, organizing groups, events, etc. It takes a lot of work but think of all of the people you would be helping who really have no one else to turn to. I hope this article spoke with you, like it did with me.

My Medical History Story & Patient Rights

I want to take a moment to tell you about some of my medical history. I know that a lot of my entries are about present events, but there were a lot of events that led up to where I am now.

It all started when I was in high school, in 2000. I was sixteen years old and I was very, very ill. The illness just sprung on me, like a tiger waiting to pounce. It started with a fever, and I remember being in so much physical pain. I remember riding the bus to school and vomiting on the bus. The bus driver made me wait in the seat I vomited in until everyone got off of the bus. I remember being ashamed and embarrassed as all of their judgmental eyes passed over me as they left the bus, one by one. After everyone had gone, the bus driver gave me paper towels and cleaner and told me to clean up my mess myself and that she wasn't touching it. Sadly, I didn't know enough then to challenge her or just get off of the bus. I remember other mornings where I would walk to class with my best friend Paul, and just start vomiting. This one instance stands out in my mind. We were walking to class and had to pass through a breezeway outside, when I felt the urge to vomit. There was no where to run, I had to get sick then and there so I ran to the side of the high school building and vomited into the grass. I remember Paul holding my hair back for me and telling everyone who passed by that I had bad Chinese food the night before. He stayed with me until my episode was over and walked to the office with me so that I could call my mother.

I vomited up everything I ate and slept for three days. My mother, when I wouldn't get out of bed, felt my head and realized I was running a fever. I remember wrapping my comforter around me and getting into the car while she drove me to the ER. When I got there, I kept vomiting up bile, pretty much constantly. The doctor pressed on my abdomen and I vomited more. He thought that since my pain was on my lower left side that I might have appendicitis. I was admitted into the hospital when he finally reached my doctor.

I don't remember much after that. I was in a haze of pain medications, nausea medications, and just exhausted. The doctor that I normally saw came in to see me in my hospital room a few times and I went in for emergency surgery. They did an EXPLORATORY LAPAROSCOPY on me and took pictures while the doctors were looking for the causes of my sudden illness.

When I came to, in recovery, I was taken back to my hospital room. They gave me more pain medication because my belly was very swollen from the gas they pump in during the surgery and the surgical incisions. The doctors went in through my belly button and my lower left side. I remember being really angry because my aunt had the pictures the doctors took of my abdomen and I remember yelling at her and reducing her to tears because I wanted to see what had made me feel so miserable. Did I mention that I am really mean on pain medication? I don't know why I have that side effect, but I do. I apologized to my aunt later and now everyone laughs about it.

The doctors found that I had ovarian cysts. This can be normal in women but mine were pretty big. They removed some of the cysts and some had ruptured, leaving fluid behind that caused an infection. I also had endometrosis. I was utterly shocked because I was only sixteen. I didn't realize that my vomiting and pain could be something like that, because I remember thinking that it must have been some sort of virus. I had never seen anyone else that sick in high school. The doctor also informed me that he took out my appendix anyway, just in case.

My classmates from Chemistry came to visit me while I was in the hospital, bringing me a card signed by everyone (which I still have), and wished me a speedy recovery.

From then on, I would vomit and get really ill on and off, for years.

I became really ill in 2005. I had abdominal pain and my symptoms were the same as they were before. I went to the GYN and told them about my history. They ordered another exploratory surgery and found a few small cysts, but nothing out of the ordinary. They found a few lesions that were removed but nothing to explain my symptoms. Eventually, I was fired from work because I couldn't come in due to vomiting and missing too many days. I stayed miserable for the next few years with the abdominal pain and vomiting.

I went from doctor to doctor, only to be told that there was nothing wrong with me and that what I was experiencing was in my head. After a while, I started to believe them, but I never gave up. That's the important part of all of this - NEVER GIVE UP! You know your body better than any doctor does.

In 2010, a friend of mine suggested that I see another GI doctor. I had been blindly following what doctors had been telling me for five years previously, so what would be the harm in getting another opinion? This was the first time I became my own advocate. I didn't realize that patients had rights. How could I? No one had ever told me. So, I started doing research and found a GI doctor covered by my husband's health insurance, close to our house. I made an appointment and started doing research online about my symptoms. I began to take down questions to bring with me to ask the doctor. I didn't get all of my medical records together because there were scattered in so many different places. My doctor in my hometown had hundreds of pages on me alone, my file was the size of a textbook!

So, I went to my new GI doctor and brought questions, my symptoms, and what I had eaten/gotten sick. He listened to me and poked around my belly for a bit. He looked at me and told me that I needed a HIDA SCAN to confirm his suspicions. He thought that my problem was my gallbladder but wanted to make sure, first. This seemed reasonable to me, so I went to the hospital for my scan. The procedure HURT SO MUCH! I cried during it because of the pain when the dye hit. This wasn't a normal reaction. Usually, the scans are supposed to be painless.

After the scan, I reported back to my doctor. He looked at my results and told me that my gallbladder was functioning at only 15% and sent me down the street to the general surgeon. The surgeon was amazing. He answered all of my questions about the surgery, and took the time to examine me. Upon further examining, and realizing I hadn't eaten in a week, decided to hospitalize me. I waited in the hospital for a few days while he gave me medications for pain and nausea, as well as re-hydrating me. My fever ran close to 105. So, I had the surgery.

The OR staff came and wheeled by hospital bed down to the operating room. They waited for the doctor to come in before they gave me the medicine to relax me. When the doctor entered the room (and OR's are freezing), and they gave me Versed to relax me while the surgeon prepared for my gallbladder removal. I remember, after they gave me the medicine, that I told him that I hoped that it wouldn't be like the scene from SPACEBALLS where the alien pops out of me and does a dance across the OR. The surgeon cracked up as the anesthesiologist put me under.

The surgery itself wasn't too bad. I was up and walking around the next day. I remember that the surgeon came into my room and told me that my gallbladder was the nastiest thing he'd ever seen. As it turned out, my gallbladder was NECROTIC. So, I'm glad that I got that second opinion and didn't listen to the other doctors.

After that, well, as you well know, I've had nerve damage and more complications. In March of 2012, I was hospitalized for what the doctors thought was a terrible stomach virus. I received every test under the sun. I was vomiting up everything, even water. They decided to do a Gastric Emptying Scan on me, which I had never heard of. The doctor told me he was testing me for Gastroparesis, but I had never heard of it. My scan came back saying that after four hours, my stomach was only emptying at 36%. My GI diagnosed me with a mild case of Gastroparesis and discharged me after he did the ERCP procedure (which can be found in another blog entry of mine).

I went home and researched Gastroparesis, but aside from Stephanie's and Crystal's blogs/websites, and Mayo's of course, I couldn't find anything else on it. I decided to start my own blog and I helped start a facebook page that I'm no longer a part of, but I helped it grow. I've started my own facebook pages and groups, and they have been pretty popular online. However, my stomach, even with medications and a botox injection, has quite been the same.

I vomit daily (6 to 8 times, if I'm lucky). I'm seeing a Mayo Clinic Specialist, but I'm still my own advocate.

I want everyone to be aware that they have RIGHTS as a patient. They are but not limited to:

The right to receive information from physicians and to discuss the benefits, risks, and costs of appropriate treatment alternatives.

The right to make decisions regarding the health care that is recommended by the physician.

The right to courtesy, respect, dignity, responsiveness, and timely attention to health needs.

The right to confidentiality.

The right to continuity of health care.

The basic right to have adequate health care.

Don't EVER let any doctor tell you otherwise. If you aren't getting the care you need, don't wait like I did. Don't be miserable for five years, almost destroy your marriage, and friendships. Keep searching until you find someone who will take the time to listen to you and give you treatment. No one should have to suffer when there's so much that modern medicine can offer. <3 More about patient's rights and what they are can be found HERE, HERE, and HERE.

Also, Valentine's Day is coming up. There is a movement going around in the Gastroparesis communities to wear green on the 14th of February. This image was made by one of my fellow Gastroparesis fighters. I know that Valentine's Day is a celebration of love. People normally wear reds, pinks, and purple hues, but how about showing a different kind of love and support this year? Will you please wear green to show support and love to those of us with this illness?

We are asking that you stand with us in unity to show support. It's a small thing to ask to support me as well as other GP fighters out there. We can't eat the Valentine's candy and most of us can't even sit in a restaurant because the smells make us ill. It would be appreciated so much. If you could take a picture, we can compile them to make an awareness video to show people that GP is out there and people know it exists.

No awareness, no research, no cure.

This picture was made based on the Spoon Theory: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

These images can also be found on our PINTEREST PAGE.