Find us on Google+ Gastroparesis

Sunday, February 7, 2016

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.

Monday, February 1, 2016

The Gastric Stimulator Part I - Personal Stories From Real People Who Have Had the Surgery

A lot of people have had a lot of questions about the gastric stimulator. What is surgery like? What is the prep before the surgery? How long does it take to heal? What will it be like after surgery? Will I be able to eat?

I haven't had the surgery done myself, although I do have a spinal cord stimulator, so I asked several people for their stories of having the gastric stimulator placed. I wanted to share these stories with you in case you were thinking of getting the gastric stimulator and had questions about it.

The first story comes from Donna:


The second story comes from a patient who wanted to remain anonymous:



This is what it looked like after the doctors placed the gastric stimulator:






GASTRIC PACEMAKER OR NOT: MY EXPERIENCE
BY: Christina T

I know there are so many decisions to be made when you are faced with a chronic illness. You may often question certain decisions whether it be tweaking your medication regimen, deciding to enroll in a new clinical trial, or the basic question which seems so hard to answer: how do I control my symptoms? It seems easy for those around you to just simply say “All you have to do is take a pill a couple times a day” or “ Haven’t they figured out how to fix you yet?” But as we know chronic illnesses are not that simple to treat, that’s why they are called “chronic”.

One of the decisions you may be faced with is “Should I get a gastric pacemaker?” or “Is this the right treatment for me?” Most of us will begin meeting with our doctors and our care team to come up with a plan that discusses the pros/cons of the procedure, the actual surgery, and the recovery period including the dos and don’ts after surgery, any follow-up appointments, and how you will need to take care of yourself afterwards. All of this can seem very overwhelming but it’s important to remember to make the best decision for YOU! Our team can flood us with information but you have to be your own voice and be comfortable with the decision you are making.

Once my treatment plan wasn’t working, I faced the question “Do I get a gastric pacemaker or not?” After deciding to consider the pacemaker, my GI referred me to a surgeon who would implant the Enterra device. I went in to the appointment ready to hear what he had to say, but had a nervous feeling in my stomach. On the first visit he went over my symptoms, how long I had felt this way, what had I tried, etc. It was a very thorough exam in terms of him asking me questions and going over my long, detailed medical history. He asked me how often I got nauseous, how I was controlling it, and if I felt the treatment was successful in dealing with my symptoms. I answered him and told him that I was NOT nauseous but did throw up after most meals. He continued on with the appointment and gave me my packet of information on all of my pre-op appointments for the next week and my surgery was scheduled for 2 weeks from then.


I then left and had a follow-up scheduled for the next week. First, I was supposed to have a meeting with him, and then go over to the hospital to have my blood work, EKG, and other routine tests performed to give me the green light for my procedure. I showed up for my appointment and he again reviewed my symptoms and a “light bulb” moment went off in his head. He finally registered that I did NOT have nausea. Additionally, he realized I was a patient who needed to have MRI’s on a yearly basis for other medical issues. He then began getting upset with me and calling my GI and getting very angry for why she sent a patient who was not a good candidate for the procedure. I felt so uncomfortable as a patient because I was sitting in his exam, room and he was right next door calling my GI during a procedure, made her step out of the OR because he was so infuriated that I had wasted his time and how could she send me to him when I was not a candidate. I remember sitting there and feeling so embarrassed for him. He was so angry that I don’t know if he realized the whole office could hear him basically chewing out my GI. He then came back into the room and it was decided we would cancel the procedure. After we made this decision, he was still pretty heated and made me feel very badly that he had to call everybody and cancel everything. After all, it was more or less the 11th hour but I didn’t care. He kept saying things like, “Now I have to find someone to take your place because we already have the device here, I have to call the hospital now and take you off the schedule and get a hold of so and so, etc.” But, I knew in my heart no matter what he said, I had to do what was right for me! That gut feeling I had felt all along was becoming harder and harder to ignore. I felt the writing was truly on the wall at this point.

So, in conclusion, the lessons I’ve learned that I hope you will gain wisdom from is this:

1) Listen to your gut- if something doesn’t feel right to you whether it be in your healthcare or your job or some other aspect of your life, trust your intuition. Don’t hope that in time you’ll become comfortable with the situation or decision.
2) Do your research- I always find it helpful to talk to others who have gone through the same thing. Ask friends, family members, and coworkers about their experiences, who they have used, and if they would recommend him/her. Talk with your doctors and ask for referrals from them. Seek second and third opinions, don’t just settle- -your health and life depend on it!
3) Always go in with an open mind- Go into every situation with an open mind and then make your judgments after. Whether it is an important appointment like mine, a job interview, or something else, never let your judgment be clouded by preconceived ideas or thoughts. Doors are always opening and closing throughout our journey, be open to what life has in store for you.
4) Allow for reflection time- Very rarely in life, unless it’s an emergency, do you have to make a decision right then and there. Being able to walk away from important decisions and come back to them after having time to think things through often allows people to make better decisions.
5) Know and understand exactly what’s involved in your recovery- Make sure you understand your restrictions such as diet, activity limits (i.e., heavy lifting, when you can resume working, etc.) and how to properly care for yourself after to ensure you have the best chance possible for a smooth and successful surgery.



This is a picture of the gastric stimulator, taken from: http://www.implantable-device.com/wp-content/uploads/2011/12/Tantalus-II.jpg?94fb22




This story is Stephie O.'s personal experience:

My story is a long one of constant misdiagnosis and long time searching for a doctor who could help once I found out what I had and suffered for over 15 years. So on that note my doctor who given me the surgery would only except me is my percent was low enough on the gastric empty scan 15% or less and had the symptoms needed to fit into what he felt were acceptable to risk the surgery. I threw up many times a day sometime so many I would end up in the hospital. The pain i had sometimes was not bearable I was a complete mess. So I was a go ahead for the surgery. The doctor had me take a xray to look for good placement then did surgery soon after. I had mine on my left side a few inches from my ribs. There is about a 2 inch scar.

When I woke the pain was worse than expected and the breathing! Every time I took a breath it got to a horrible pain scale! But as the days went on that pain was completely gone. I stayed in the hospital 4 days but he said the average is 3 day's[sic].

On the pain relief scale and nausea scale things were better almost instantly. I was not 100% but things were livable. When I seen the doctor less than a week after discharge he was able to turn up and change the frequencies. When he did that I was aware of a small pinch right where my pacemaker was which as quickly as it came ...gone. I was about 99% better only here and there had I had very small episodes of pain. The nausea came and went but the intensity with decreased on such a scale that my life is so much better with the device then without it. About a year and a half later I notice things were going downhill an extremely fast. I went to see the doctor and he turned up the device which helps for a very short time and the same thing would happen I would get extremely sick and in lots of pain he turned it up to the max that he could. things got so bad I weigh 98 pounds at 5'10" ghe doctor quickly put a feeding tube in my stomach and left the pacemaker in. We tried to make things better for months after that and nothing was working. If I continued at this rate they said I could die soon. So we got aggressive and took the feeding tube the gastric pacemaker out and removed about 3/4 of my stomach like a cancer patent would have done . I am about 60 sometimes 70 better now. It was all a long road. I can say the pacemaker make my life livable for a long time and I was amazed at how well it worked! Would not change a thing about that surgery ND would do it again!





This story is from Julie:

I got it on April 20th. Reason [sic] I made the decision to get it was because I couldn't handle the throwing up and nausea anymore. I first had to get approval through my insurance. Once they approved [it] I got the temporary which is for 5 days and had an endoscopy. It worked so I went ahead and talked to the surgeon to get the permanent one. Surgery was very painful. I have a high tolerance when it comes to pain meds but the gas pains where the worst. I still have pain where the pacemaker is located but its not as bad as it was before. I did stay over night in the hospital because they wanted to make sure anesthesia wouldn't make me sick and [also wanted to see if] I could tolerate food. I am still getting use to it and I already had my settings changed because I am still getting nauseous but was nausea free for the first 2 weeks. It has helped because I have had less nausea and vomiting. I would definitely recommend to anyone who throws up a lot and is very nauseated like I was. Being scared is a natural reaction to have when it comes to having surgery but just try to think positive. I was walking that next day. They wanna make sure you are able to use the bathroom (peeing). Doesn't help the GP pain at all. It is only for nausea and vomiting that's all. Yes I do notice a big difference between before and after the pacer. Less days of being nausea than before.




This is how the gastric stimulator is inserted, photo taken from: http://image.slidesharecdn.com/stomachpacemakerforweightloss-111109000052-phpapp01/95/stomach-pacemaker-for-weight-loss-8-728.jpg?cb=1341455043




This story is from Kathleen:

I've had my gastric pacer for 1&1/2 years. I was terribly sick and had exhausted all other avenues. Getting authorization from the insurance company was pure hell. I finally received news that I was authorized. I had lost 84lbs. I jumped at the chance for help. I didn't have to do a temporary. The surgery went well. I had a few complications so I ended up with a 4 day stay. I traveled 9 hours round trip every 3 months for adjustments. With each adjustment I felt better. For a whole year I got great relief. I put weight on and avoided hospital stays. Then I started throwing up again. I'm losing weight like crazy again. I had a GES study and CT Scan. They showed hyper digestion. I've had 6 ER visits the last month to get stabilized. I am now sick again almost daily. This by all means isn't a cure. I have an endoscopy with baristate on the 27th of this month. I don't know what my future holds but at this point I'm willing to try anything. I say if you're sick to at least give a pacer a try. ��




This is Melissa's story:

I'm Melissa. I have a gastric pacemaker and wanted to give you an idea of how mine is going and etc. First of all, it took me a long time, over a year, to get to the place where a doctor agreed to give me a pacemaker. Because of my intestinal dysmotility [sic], both the Cleveland Clinic in Ohio and Piedmont in Atlanta didn't want to put it in. They thought it wouldn't help because they thought my intestinal dysmotility [sic] played too major of a part in my symptoms of nausea, vomiting, weight loss, malnutrition, dehydration, bloating, pain, and more. However, I wanted to try the pacemaker before any of their options. The CC wanted to do major surgery and was even talking transplants and Piedmont just wanted to give me a bunch of tubes which I believed wouldn't help all of my symptoms. So I opted to go with a doctor in Augusts at Georgia Regents Medical who wanted to try the pacemaker. His name is Dr. Rao.

Surprisingly once we put in the paperwork with the insurance company it was approved within a month or so. Once it was approved, surgery was set. Getting ready for surgery wasn't difficult, just the typical don't eat after midnight (which I couldn't eat anyways), and washing the surgical sight several times with special antiseptic soap. I did have to do an extra pre-op appt because I have tachycardia so they had to do an extra EKG and such to double check to make sure my heart was good.

The day of surgery was nerve racking to say the least. My sister, nephew, and best friend went with me. It was scheduled early so as to give me more time in the hospital to recover. They had already planned for me to stay overnight. My particular surgeon had all his pacemaker patients stay overnight. Not all surgeons do that. If you are given the choice, stay overnight. It was nice to have nurses help you get up and around. Not to mention, the pain meds in an IV are much easier to take then the pills they give you when you go home. Anyhow, once at the hospital it was the normal check in and probably within an hour of being there I was getting anesthesia. The surgery itself was about 3 hours.

I honestly don't know how long I was in the recovery room. Several friends drove down to Augusta to see me while in recovery and I don't remember it at all. Once moved up to a room I was more coherent and definitely started to feel the pain. It was done laparoscopically however where they put the pacemaker in had a large incision. Plus my entire abdomen was just sore. I was thankful though that I didn't throw up. I usually throw up after anesthesia but apparently they double dosed me with nausea stuff before I went in and put a patch behind my ear that stayed on during surgery and for a couple days after.

Anyhow, I learned quickly to let your nurse know you are in pain. There is no point in toughing it out when they can give you the good stuff in your IV. Because of the pain medicine and alternating giving me zofran and phenegran in my IV I actually slept ok, for someone who had just had surgery anyways. It was painful to get up and use the restroom and walk around but that's why staying overnight is also helpful. The nurses helped me, as well as my awesome sister who spent the night. I would recommend someone trustworthy spending the night with you.

I started to get really flushed and hot and when the nurse didn't come to check it out, my sister totally went out and got that nurse. The day after surgery they had me walk around some and then said I could go home. Because we were 3 hours away from home, we opted to stay in a hotel nearby for another day or two. That was a good call too because without the pain meds through the IV I was super sore. They gave me percocet to take, but I opted not to take it.

My stomach never did well with pain meds and I wasn't about to risk it right after abdominal surgery. So I crushed up tylenol and used that for my pain medication. Not as effective as the hospital pain meds by any means but enough for me to be able to grin and bear through it. The ride home was rough. Every little bump made me hurt.

I also had to put a pillow between me and the seat belt bc of where my pacemaker was placed. Different doctors place them a little differently but mine was placed right where the seat belt goes across. So rough 3 hour ride home. But once home, or rather at my sister's house to recover, I was able to relax a little bit. I won't lie. The first week after surgery is painful. I was really sore and moving around too much really smarted. Getting into a good sleeping position was hard.

The worst though was when I finally had to have a bowel movement. Pushing down was very painful but once it was over with I was so relieved. Anyhow the pain subsided some after the first week, and then continued to subside as the weeks went on. By my post-op appt a month after surgery my abdomen was only hurting when I stretched it the wrong way.

Now at my post-op I had my pacemaker adjusted up. I had been trying some soft foods like jello and noodles but wasn't always keeping them down so they adjusted my pacemaker up. After my adjustment, for a couple weeks I was able to have some more soft foods and stuff like crackers but only a few bites before I got extremely nauseous or even sick. So I was still having to supplement with Ensure Plus.

After another month of this I went to get it adjusted again. Unfortunately, I got really sick about that time of the adjustment with a UTI and sinus infection. This set me back big time. My gastroparesis flared and the antibiotics they gave me made it even worse. After trying to keep down 3 different rounds of antibiotics my stomach completely revolted and I couldn't keep anything down. I ended up in the hospital with a critically low BUN level and had to get fluids and a banana bag over the course of 3 days there. That was last weekend.

So now I am waiting to see the doctor in Augusta tomorrow to see what we can do to get everything on track. I will say this... the pacemaker seemed to help for a couple of weeks. However once my stomach started to flare, it became useless even after several adjustments. I know everyone has different stories but mine has been a struggle so far. I will say this too though. I have not completely given up on my pacemaker. My surgeon says that sometimes it takes people up to 6 months for their pacemaker to really 'kick in' and I am really hoping this is true for me. I am hoping that it was just the infections and the antibiotics that messed with my pacemaker's success. I will know more tomorrow when I go see my doctor in Augusta.



The gastric stimulator, photo taken from: http://diatribe.org/sites/default/files/diabetes-tech.png



This is ReggieKay's Story:

In 2005 I had a neck surgery on C/5-6, two months after that is when my symptoms started and of course no one would admit that my vagus nerve was damaged, but I believed it was. I had nothing wrong with my digestive system before this.

I went through so much before even being diagnosed, even an ERCP and I got pancreatitis, from it, almost losing my life. They even tried Botox, reglan, domperidone, and finally, put me on tube feedings. I was down to 98 lbs, showing the tube feedings had became unsuccessful, then I was put on TPN and sent to a long term care facility, eventually at the end of 2008 sent home to die.

In 2009 a doctor in New Orleans, Dr James Smith, agreed to see me. I went from the first office visit with him to ICU for long time, and my only hope was a gastric stimulator. I was the worst case he had seen and at the time he had about 6-8 patients. He pushed for the stimulator, thinking it would be only thing to really save my life.

I was on TPN until 2012 and after many adjustments and many septic infections, the last one about did me in & the doctors said I would not survive another one, so we finally put the stimulator on the highest setting and I was able to get off TPN and have my picc line removed. I also, decided to remove myself from all stress & an emotionally abusive relationship. I got off all of my prescriptions, except Marinol, another life saving drug for me. I believe stress makes GP much worse.

The gastric stimulator batteries usually last 4-5 yrs, but mine went out earlier due to being on the highest setting. I am to replace it every 2 yrs. This year it went out, it was my fault because I was going through a divorce, went off grid and lost down to 119 pounds before having my batteries replace again. Since October of this year I have gained 10 lbs. I still have a G-tube for drainage and having it replaced at the end of this month.

Now, the surgery for gastric stimulator was not easy for me, now I think they can do it better. My doctor had not done many [of these surgeries] at the time... they cut me in two places up & down my stomach and on my right side. I woke up in a lot of a pain and my bladder was traumatized, so I had to be on a catheter for a few weeks.

Scary as this may seem I would do it all over again. I really believe it saved my life & opened a new world to me. I did not prepare for the surgery itself , just regular no food or drink after midnight, and recovery I would say was 4-6 weeks.

Normally, you go home in a couple of days. The hardest part was figuring out what the settings should be, because every one is different. That was the most frustrating part to me and the doctors. I was so dependant on TPN and everything was shut down for so long my body was in bad shape and I think that's why it was a slow process for me. I totally would think the sooner the better. I support the gastric stimulator and do believe it can save lives. I hope this helps! ~ ReggieKaye



This is Christine R.'s Story:

What made you decide to get the gastric pacemaker?
AFTER FOUR AND A HALF YEARS OF STRUGGLE AND FAILING ALL MEDICATIONS, THE PACEMAKER WAS MY LAST OPTION.

What was the process that you had to go through to get the pacer?
I HAD TO KEEP A WEEK LONG JOURNAL ABOUT VOMITING, PAIN, EARLY SATIETY, AND NAUSEA; DO A 4 HOUR GASTRIC EMPTYING TEST AND MEET WITH THE SURGEON TO DISCUSS THE OUTCOME OF IT ALL.

How long did it take you to get used to the pacer?
PHYSICALLY BEING THERE, IT DOESNT TAKE that LONG...MAYBE A WEEK OR SO. ONCE ITS ON AND RUNNING YOU DONT EVEN NOTICE IT.

Did it help you?
AT FIRST IT DID AND THEN IT'S EFFECTS STARTED TO WEAR OFF. IT IS CURRENTLY TURNED OFF AND IM QUITE MISERABLE.

Would you recommend it to others?
IF YOU HAVE THE OPTION TO GET IT, GO FOR IT! WE HAVE SO LITTLE AVAILABLE FOR US, ANYTHING IS WORTH A SHOT.

Do you have any advice for those who are scared of the surgery but are considering getting the surgery?
JUST KNOW YOULL HAVE PAIN, BUT ITS NOT HORRID. TAKE THE OAIN MEDS AS OFTEN AS YOURE ALLOWED AND GET REST AS MUCH AS POSSIBLE.

How soon were you walking around after the surgery?
THEY WANTED ME WALKING AROUND THAT EVENING, BUT I SUFFER FROM MILD POTS SYNDROME AND WAS HAVING LOW BLOOD PRESSURE, SO I COULDN'T WALK AROUND UNTIL THE NEXT MORNING.

Did it help the GP Pain any?
ITS ONLY HELPED VERY MINORLY.

Do you notice a difference from before the pacer and after the pacer?
NOT PARTICULARLY, BUT I FONT REGRET IT. HOW WOULD I KNOW ONE WAY OR THE OTHER IF IT WOULD HELP IF I HADNT OF TRIED.

My story with Gastroparesis starts in 2010. One day I was fine and the next day I wasn't. I was close to turning 30 and my life completely changed. I woke up feeling sick and didn't know what was going on. I ended up throwing up for hours on end and being taken to urgent care. That was the beginning of GP for me--except they didn't know that. I also had symptoms of vertigo and a migraine, both of which I had never had before. Everything continued for MONTHS before they diagnosed me. I was wheelchair-bound, vitamin-B deficient, not driving, not working, and losing weight and hair by this time. Over the course of four and a half years I lost 115 pounds and tried several medications that didn't work. When I started looking pretty bad and my hair dying, that's when my GI doctor suggested the pacemaker and I started the process. Even though it's not been this BIG miracle, I don't regret it. We GPers have so few options offered to us, so why not take those given, you know?! I do have some secondary disease as a result of Gastroparesis. I now also have (mild) Postural Orthostatic Tachycardia Syndrome (POTS) and neuropathy in my legs, but I don't let any of my diseases slow me down!



This is Diane S.'s story:

I got mine Feb 2011. It took me 2 years of weight loss and being on liquids to get it. Even though I was down to an average intake between 400-700 calories daily, I wasn't a candidate for tubes because my weight had more or less stabilized and my labs had compensated. Surgery was no joke. I spent over 8 hours in the recovery room because they couldn't get my pain under control and the irritation from the surgery had kicked off severe vomiting that they couldn't get under control either. But, once they gave me a pain pump and got me up to my room, I was able to stop using the pump after about 5 hours. I was sent home about 36 hours after surgery, about 11 pm...the delay was due to the on call surgeon (not my usual one) writing for the wrong pain medication for me to take home. Only took those for about 3 days once I got home. Was out for 3 weeks, but was able to return to work at almost full duty. I only had to get help if holding a large patient, or holding a patient up for an extended period (I worked in an ICU). The stimulator helped right away with the nausea, but there was noticeable changes after the 3rd setting change at about 5 months. So far, the battery is holding its' own.




This is Micki F.'s Story:

They [the doctors] believe I had the symptoms of GP for a long time but didn't get diagnosed until 2010. That is when the decision was made that if I didn't quit work I would be dead before the end of the year. The down side of that is I was left with no insurance.

By the time I became eligible for insurance and went through multiple appeals to get the pacer approved in May of 2012, I had lost from 122 pounds down to 83 pounds. I really had gotten so tired of fighting at that point they were afraid I might not survive the surgery. Dr. Abel placed my pacer with the help of Dr. Lahr at UMMC in Jackson, MS.

The constant 24/7 nausea was all but gone when I woke up. It's not a cure all but it has been a life saver in that I am more functional. A nurse taught me that sometimes, not all the time, the difference is those who give up, those that have been let get too far into the illness, and those who want to strive to thrive. So I spent a week in the hospital being one that was almost too far into it, then I went home and we started the long recovery.

In this three year time I have gained from 83 to 109, I have gone from not able to eat anything to getting down about 1000 calories a day of soft foods. I have gone from taking phenergan (liquid works best for me) 4-6 times a day down to twice and the most. There are still problems the gastric stimulator can't fix. My bowels don't move at all by themselves so I am totally laxative dependent. I can't drive or work because of the sudden syncope episodes and sudden bowel explosions with no warning from the unpredictable laxatives.

I still have to get 2 multivitamin drips a week. But with the gastric stimulator I am alive. My nausea is limited to none if I am careful. I gain weight on a limited diet.I have been able to return to church 90% of the time. I am able to enjoy time with my grandchildren when they visit me at my home instead of a hospital room or ER as before. I have learned that my life will never be the same again, but thanks to the gastric stimulator I have a life to live. Day by day, but I have a life to live. I hope this helps anyone trying to decide. It's an extensive surgery; not for quitters. But as you heal and get adjustments the quality of life returns to quality.



This is Bridgett K.'s Story:

To fully recover was probably about two months. I had pain on my right side where they implanted every time I got bloated or when I stood up straight. Still get pain in that spot if I am stupid with what I eat. There wasn't much prep to the surgery. They called me two weeks before surgery to say I had been approved. They wanted to put it in one week from that date but my insurance wouldn't let them. So I met with the surgeon a week before add he explained to me the procedure. The night before I wasn't allowed to eat(not a problem) :). I was super excited because my picc had to be pulled about a month prior because I got sepsis from it getting infected so I wasn't getting much nutrition.

My husband has video of when I first woke up. They have you pretty doped up so I don't remember much except worrying about imaginary cupcakes. That night I had a liquid dinner and the great day they turned it on. No significant improvement from turning it on the first time. Maybe a little improvement in nausea. I believe the surgery took about two hours. So it was pretty quick. I was terrified. Partly because it was a surgery but mostly because if this didn't work then I would be tube fed for the rest of my life. Not that there is anything wrong with that. I have had a picc line twice and got sepsis twice and the idea of a tube directly into my intestines just scared the heck out of me. If that's how I would have to live I'm sure I'd adjust but I was really hoping the outset a would work. My gi isn't exactly a people person and he's a little weird but I'm glad I found him. He gave me a new lease on life. I got down to 94 pounds and at 5'3 I had lost 40 pounds and was emaciated. No one seemed to help except this guy. I was allowed to eat after surgery as soon as I could but I spent most of the day of surgery sleeping.

They monitor the gastric stimulator through a handheld device that tells them my settings and they can adjust the settings through that device. The newer machine that just came out will even tell your doctor when it's time to replace the machine. I would say for anyone who had exhausted all other options this is worth a try. They can take it out if it doesn't help. I don't even mind the two three inch scars. I have plenty of other surgery scars from fusions and other surgeries but I'm proud of these scars.



Gastric Stimulator with handheld device that the doctor holds, photo taken from: https://i.ytimg.com/vi/6MB72kTHLrU/maxresdefault.jpg

Gastroparesis: Know the Risk Factors for This Mysterious Stomach Condition

This is an article that spoke to me as well that I found online. I wanted to save it in my blog so that I could refer back to it when I need to. I also like having things in the same place, research wise, because it makes finding things easier. Plus, it contains great information that might help others who may not have seen this article. I want to have information in the same place so that people can find it and read it but I am including the source, if you want to go back and read the original article. This article was taken from: http://health.clevelandclinic.org/2015/09/gastroparesis-know-the-risk-factors-for-this-mysterious-stomach-condition/.


And it reads,

"Gastroparesis: Know the Risk Factors for This Mysterious Stomach Condition
Early diagnosis makes treatment easier
September 8, 2015 / By Digestive Health Team
Digestive stomach system - real view female anatomy concept


As diabetes cases skyrocket, another condition called gastroparesis is rapidly becoming a more common diagnosis. It reduces the ability of the stomach to empty its contents but does not involve a blockage. Nausea, vomiting, loss of appetite, bloating and chronic abdominal pain are the hallmark symptoms, according to gastroenterologist Michael Cline, DO.

If you have diabetes, gastroparesis can cause it to be poorly controlled. Severe gastroparesis makes it difficult to manage your blood sugar.

Primary care physicians — and even gastroenterologists — frequently overlook and under-diagnose the condition, he says. Sometimes it is initially misdiagnosed as an ulcer, heartburn or an allergic reaction.

In non-diabetic patients, the condition may relate to acid reflux.

'In current data, up to 40 percent of people with acid reflux have some sort of delay in gastric emptying,' he says. 'So that’s a fairly large number, when you look at the millions of Americans who have acid reflux,' Dr. Cline says.





Stomach motility either abnormal or absent

Gastroparesis, which means partial paralysis of the stomach, is a serious disease that prevents your stomach from digesting food and emptying properly. Damaged nerves and muscles don’t function with their normal strength and coordination. That slows the movement of contents through your digestive system.

Doctors don’t yet know how to reverse the damage, but there is a range of treatment options. And, early diagnosis helps, Dr. Cline says.





A look at what causes gastroparesis

The primary cause of gastroparesis is damage to or dysfunction of peripheral nerves and muscles.

In diabetic patients, Dr. Cline says, it appears as more of a neuropathy-based disease associated with damaged nerves. In patients who don’t have diabetes, it seems more muscular-based: The nerve endings are all right, but the muscles are not responding, he says.



In addition to diabetes, other sources of gastroparesis include:

Lingering post-viral effects — You get a virus, but the nausea and vomiting from the virus don’t go away after the virus is gone.'Some of those cases will resolve, and we just have to wait and watch,' Dr. Cline says. 'But a lot of times it doesn’t resolve, so we have to continue to treat the patients.'

Connective tissue diseases — Gastroparesis may plague patients who have diseases such as multiple sclerosis or muscular dystrophy.

Side effects from medication — Probably the most difficult group to treat, narcotic pain medicines and other drugs slow a patient’s intestinal motility, Dr. Cline says.'That can be very hard to treat, because the medications often override what we prescribe to treat the gastroparesis,' he says.

Post-surgical effects — Some patients develop gastroparesis after the vagus nerve is damaged or trapped during a gastrointestinal surgical procedure.





A difficult disease to treat


Treatment sometimes begins with adjustments to diet and medication. If those approaches don’t work, surgical treatments are the next steps:

Feeding tube — Because gastroparesis impairs proper nutrition, surgeons can insert a feeding tube through the patient’s nose that bypasses the stomach. Or a surgeon may place what is known as a J tube directly into the patient’s small bowel for feeding.If these don’t work, total patient nutrition (TPN) is the next step. The patient is fed through an IV.

Gastric pacemaker — A surgeon also may use a minimally invasive laparoscopic procedure to implant a gastric pacemaker to treat this chronic digestive condition.The small device employs gentle electrical impulses to stimulate the stomach’s muscles to perform their usual functions. These impulses help move the stomach’s contents through the digestive tract and bring the patient relief from symptoms.'We’re moving towards not really curing gastroparesis — because we really don’t know how to reverse the neuropathies yet — but fixing it as best we can,' says Dr. Cline. 'So patients and their families need to push for the diagnostic tests that we can do, because the earlier it’s diagnosed, the easier it is to treat.'


The gastric pacemaker after surgery. Photo used with permission from the patient, not in article.





Treating psychological concerns


A neuropsychiatric specialist is sometimes called in to address mental health concerns that can accompany this chronic disease.

'If you wake up sick every day and vomiting all the time, this disease can quickly move from a purely physical one to a psychiatric one, so we treat the possible components of depression, anxiety, pain and so on, too,' Dr. Cline says."

To the Loved Ones of a Person Living With Chronic Pain

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


And it reads,

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

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

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

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

Here are several things I believe need to be known:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Follow this journey on Slightly Distressed Damsel.

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

Lead photo source: Thinkstock Images"

Sunday, January 31, 2016

A Letter From A GPer to A Friend/Family Member

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



Dear Friends and Family,

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


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

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

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

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

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

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

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



Sincerely,
GPers Everywhere


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

Sunday, January 10, 2016

GP Support Groups vs. GP Support Groups - Illness is NOT a Competition or a Number's Game

I've heard from several different ‪#‎gastroparesis‬ groups and pages that there are different levels of "sickness." I want to reiterate that ‪GASTROPARESIS‬ IS NOT A COMPETITION, nor are any other invisible and chronic illnesses! There are people scared to post, in my gastroparesis groups even, because they do not have tubes, or they are not as skinny as some of the other members, or they do not vomit, because these people are scared they are not sick enough to post. Gastroparesis comes in MANY forms! But, in the end, it's all still gastroparesis. It's still a debilitating illness, one that we are striving to bring awareness to, to get research for, so that hopefully, we can find a cure. We cannot keep losing loved ones to this illness. I just lost one of my close gastroparesis friends right before Christmas. I want to make sure that her death was not in vain and neither were her awareness posts and activities.




If you see this behavior in another group or page, where members start attacking someone because they think that they are not sick enough or they think because the person posted a suicidal post that they need to be attacked, educate them and tell them that gastroparesis is gastroparesis, there is absolutely no need for ‪what I have termed to be Gastroparesis Shaming (#‎GPShaming)‬. Tell them what they are doing is wrong and that is not what a support group is for. According to http://dictionary.reference.com/browse/support-group is defined as,

"a group of people who meet regularly to support or sustain each other by discussing problems affecting them in common, as alcoholism or bereavement."

We are all sick, no two of us are a like, but there is not a race or competition that we are trying to win at because having gastroparesis definitely is NOT winning anything. These support groups are made up of a bunch of different people who maybe be in multiple support groups but that brings me to my next point, gastroparesis is NOT a numbers game for support groups. It is not a competition of how many members you have. I have seen some pretty nasty fights over members in "support" groups. People can be in multiple groups at once. Instead of wasting energy fighting on bringing up your numbers and trying to have the most people in your group, why don't all of us, all of the support groups, work together and join forces to bring awareness to Gastroparesis. One of my friends summed it up perfectly and I'm going to quote him here,

"When I first learned about gastroparesis it was from a friend active in the community.
Once I began to understand the impact that GP had on a person's life, and the lives of those around them, I knew I had to participate somehow in advocacy.

I started joining groups, reading posts, and becoming as intimately familiar as someone without the disease can become.

But I started to sense tension. Group A, B, C, D weren't WORKING TOGETHER. In fact it seemed like there was strife between the groups. I'm a grown up, I know how things work, I understood there would be fractures, but I believed (and still do) that the best way for the GP community to get the care and attention it NEEDS is for all the groups to lay down their arms and work together.

How is that to happen? I'm hoping someone smarter than me can figure it out but I have a few ideas.
Bless us all and may 2016 find us overcoming many of the obstacles that GP presents to it's sufferers.
Thank you Emily for building bridges."





Support groups fighting with other support groups needs to stop as well. We all need each other and we are all on the SAME TEAM! I can't stress that enough. It's not a competition for numbers, for who is sickest, for who has had the most procedures - it's a support group for SUPPORT! We need to make sure to take care of our own because GPers (gastroparesis patients) are the only ones who really understand what GPers go through on a daily basis because we live through it and we need to band together to help others realize this is a real illness, even though it's invisible, and stop fighting with each other to fight the much bigger fight of spreading awareness and having others take us seriously, not to mention helping others who have been newly diagnosed that do not know where to even begin! How can they take us seriously when we can't even align ourselves, all of the gastroparesis Facebook groups and pages, to unite for a common goal? If you think doctors and nurses don't join the gastroparesis support groups to try to learn more about the disease, then you would be wrong. Instead, they see all of backbiting, talking badly about other groups/people, and plans on how to get more members without addressing the concerns of members you already have - I mean, it happens. I chose to stay offline for a while because I felt like support groups were doing me more harm than good. The extra unnecessary drama was making me a lot more ill. But, I'm back because not all of the support groups are like that and I'm lucky to have found them.

I am going to take a stand, but I need YOUR help. I can't do this alone. It's going to take all of us working together to get rid of this stigma that has risen in "support" groups lately. So, as a result of that, I am making an event that will last for a month. The point of this event is to stop #GPShaming, bullying, number's games in support groups, and to get rid of any type of competition. I want to weed out the toxic groups so that people can find the love and support they need in order to live with this illness, because gastroparesis is hard enough and no one should have to deal with it alone.

Please invite them to join this event. Please don't let #GPShaming (please use this hashtag when talking about this event or when you post a photo for unification) happen in your group, or bullying, or anything that can be harmful to other groups. Support groups should be about support and not a popularity contest...it shouldn't look down on anyone who is having a bad GP day or who needs help. There shouldn't be judgements, just acceptance. I want to rid the groups of this stigma. I also want all of the GP support groups and pages to work together on this event - because we should be uniting to help spread awareness, education that leads to research, so that we can find a cure for this illness, our illness.

Over the next month, we're going to push this message really hard in hopes we can change the minds of the gastroparesis culture online that gastroparesis is NOT a competition but a serious medical illness that needs dedication, research, and a cure. That's all that matters - to stop the senseless deaths and the suffering because I'm tired of losing friends. We should all work together, not make a scale and judge people based on that "scale." The support groups should NOT be at war with each other, there is no point in fighting with one another - we hurt each other and others. People who have been recently diagnosed who come to a support group for advice and help become collateral damage, and that's NOT OK. This is in regards to Facebook Groups but seeing how some of this is done in some of these groups is almost like corporate espionage with how elaborate it is to tear a part other groups and take their members. People can join multiple support groups and we encourage that. But, mudslinging from different groups and having competitions on who can get the most members is silly and is missing the point of what a support group is here for. We want all of the Gastroparesis Support Groups to work together to do this...because we all need to support each other too.





Upload a picture of yourself to the wall, holding a poster or piece of paper that says something to the effect of GP Support Groups support each other and GP is not a competition. ♥ That way, we can all show our unity on this issue.

Event Link: http://www.facebook.com/events/550356651796414/

PLEASE SHARE!








I'm going to leave you with a quote from another one of my great GP friends. She said what everyone was too scared to say so I'll leave you with these words to reflect on, and she wrote this knowing she might lose friends over it - so it was incredibly brave,


"I care about people, and I want to help them -- especially people in the GP community, but all others as well. If I can help, I ALWAYS will. I stand up for myself and for others who cannot or will not (for whatever reason) defend themselves. Life is incredibly short, as has been demonstrated to me time and time again in my own life and in the lives of others, and I do not wish to spend my days focusing on the bad in people or ignoring their plight.
I wrote this awhile back, but I think I need to re-post it because I truly believe it should be said again. I could reword it, but I meant what I said the first time, so I do not see the need to do that. I am at a loss to explain why people are so vicious to one another and why they jump to believe the absolute worst about others -- people who are supposed to be their friends. I am shocked at how lightly people take their actions and how they have no problem hurting people they supposedly care about. If you choose to hurt me and others I care about with no justification, then you are not my friend.

I am a proper "rules and order" kind of person (because rules are our friends smile emoticon ); yet, I am dismayed at how people let "rules" get in the way of decent treatment and compassion for others. I am likewise shocked at how they use "feelings" to justify bad behavior. If you don't like someone, "unfriend" them -- but is there really a need to talk behind their backs? Post and spread lies about them? Block them? [I have blocked exactly one person on Facebook since the day I came on -- and that was after he sent me some not-so-nice photos. (Please, if you are thinking of sending me indecent pictures, rethink it. Please.)] Good people disagree. They fight. They make mistakes. They have different values and beliefs. This is not a reason to hate.
So, I am reposting this. Add this to my already 900+ page epic novel, Grammarly.
**************************************************************************

My apologies, yet again, to my non-GP friends. I hope you can understand that my illness affects every part of my life. It never leaves me, and I never get a break from it, not even for a moment. So, I focus on it maybe more than some of my friends are comfortable with. If that is the case, this is likely a post you will want to ignore. I always struggle with how much GP happenings to let overflow onto my personal page, and this particular issue is a difficult one because it is an issue I have little desire to address. I absolutely hate discussing personal matters in public. It makes me immensely uncomfortable. I am a private person who detests talking about feelings and revealing personal information. But I am on “social” media for a reason. I need to reach people, and furthermore, I am completely devoted to helping my gastroparesis community. To that end, regardless of my comfort level, there are some things I believe I must do simply because they are right and necessary. It doesn’t matter how I “feel” about it; I just do it regardless. This is one of those times. I cannot reach everyone in all the groups, and I am not sure this would be a helpful discourse to post inside the groups anyway, so I am putting it here in the hope that it will make a difference. I kindly ask my non-GP friends to simply overlook this post and forgive me for any discomfort it may cause.

It strikes me that things are getting a little rough in the support groups right now. The arguments, accusations, and hurt feelings seem to have escalated in recent weeks. I don’t know all the reasons behind this turn of events. What I do know is that we should be strongly united as a community, and if the bickering does not stop, we are going to tear ourselves apart. For the first time since being diagnosed, I honestly feel like leaving the groups because of the level of conflict and discord that I see. Perhaps that is just my perception. Perhaps only a few others feel this way – but I don’t think so.

From my point of view, this is senseless. We are all human beings, and that makes us worthy in and of itself, but beyond that, we are all struggling with this devastating disease that has stolen so much from us and that should unite us in a common cause. Personally, I believe in showing kindness, compassion, and acceptance to all, and I strive very hard to demonstrate the principals I proclaim. I do not care if you are rich or poor; black, white, or somewhere in-between; straight or gay; attractive or unattractive; educated or uneducated; employed or not employed; religious, agnostic, or atheist; conservative or liberal; or any other thing. I also don’t care what you have done in the past. All that matters to me is that you are a human being, worthy of compassion and respect, by virtue of your existence. I am willing to show compassion to anyone who desires it, and I will help in any way I can.

So, if there is a story floating around about someone, I do not jump to the conclusion that it is true. I do not judge the person who is the subject of rumor and gossip. I do not believe everything I hear, and for the most part, I do not consider such ramblings significant, nor do I try to “get to the bottom” of the accusations. Likewise, if I see a post or comment in the groups that I do not like or with which I disagree, I ignore it and scroll on by. Not everyone thinks the way I do. Not everyone believes the same things I believe. That does not make them any less worthy of compassion, understanding, or help. And so I will continue to give it. Do I get upset and hurt at times? Yes, I do, but I move past it. People are sick; they are hurting. They are often at their wits end and have no one to help them. They are sometimes exhausted and confused. They are often hungry, weak, and not thinking clearly. They have sometimes had awful experiences that have shaped their behavior (for better or worse), and they do not always act (what I consider to be) appropriately. At times, people have weak moments or moments of anger, and they act impulsively. They occasionally do the wrong thing and hurt others. This is regrettable, but is it really unforgivable? Must we jump on every small transgression?

People make mistakes – ALL people make mistakes. We ALL have shortcomings. I have made my fair share of errors in judgment, and I have taken many actions I have later regretted. We ALL have. We are imperfect human beings. But for the most part, we are all striving to get through the day the best way we know how. So, when someone offends you, or mistreats you, or reacts less than perfectly in any way, please try to forgive them. Forgive them because it is the compassionate thing to do. Forgive them because they are perhaps struggling with a background and experiences you know nothing about. Forgive them because they are sick and tired and weak and hurting and lashing out in fear and frustration. Forgive them because they are afflicted with the same cruel disease that has afflicted you. Forgive them because they are human beings. Forgive them because you can and because it will make you a better person.

I wrote this in one of the groups a while back, and I still mean it: Our community should be a welcoming and place for all to come and share their concerns, joys, heartaches, questions, and useful information. Support and helpful comments should be all we see. Our community should be a safe haven where people feel comfortable sharing their innermost concerns without the fear of negative repercussions and hurtful responses. We should be able to openly and honestly discuss anything in our lives that disturbs us, concerns us, keeps us from healing, fascinates us, or uplifts us. We should be able to be respectful of one another as well, even if we disagree. Minor disputes do not have to become wars.

Please, I am begging you to be kind to one another and strengthen the bonds between us. Simply refuse to believe the gossip, rumors, and lies. Refuse to perpetuate the drama and bad behavior. Ignore, scroll by, forgive, move on, and focus on what we all have in common. Focus on surviving and defeating this beast we call GP. Focus on fighting for our community, on supporting efforts to find better treatments and cures, on spreading awareness to those outside of our GP community who know nothing of our illness, and on offering support for our fellow GPers who so desperately need help.

I am going to be offline more than usual over the next few days, or weeks, or whatever it takes for me to continue. I am keenly aware that I am sick. I am keenly aware that none of us is promised another day – so none of this drama matters to me. People’s opinions of me don’t matter to me. Doing what is right, demonstrating compassion and kindness, and helping others – that’s what matters to me. Forgiving others and accepting them with all their weaknesses and flaws – that’s what matters to me. I will not spend my days engaged in conflict or constantly trying to defend myself or justify my actions. I do not wish to devote endless hours to sifting through and sorting out insignificant claims and disputes. I want to help people, really help people – ALL people. I care for absolutely everyone in this community, and if you need help, regardless of who you are, I will assist you to the best of my ability. I am not perfect, and I don’t have all the solutions. I also don’t have as much time as I would like and cannot always do everything that everyone asks of me. But I love my fellow GPers, and I want to continue to do my very best to fight for our gastroparesis community. I hope you all want the same. We need each other. Please let this madness end."








Sunday, April 19, 2015

Gastroparesis vs. Eating Disorders

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


Meghan writes,

"Hi my name's Meghan. I'm a member of the Gastroparesis Support Group (https://www.facebook.com/groups/GastroparesisSupportGroup) on Facebook. I'm interested in helping with a blog article on GP caused by an eating disorder. I had severe anorexia and bulimia for 15 years. I just got a pacemaker for the GP because the damage done is bad. I was hospitalized 10 times for my ED. My lowest weight has 76 lbs. I developed the GP about 6 years into it and had a bad experience with a GI doc who didn't believe me. My ED morphed. I was purging not because I was scared of gaining weight (I wanted to gain weight!) But the food sitting undigested in my stomach made me feel so sick. So I either wouldn't eat at all to avoid the nausea or when I got starving I would binge and purge. I'm 95lbs now. I'm not mentally in an eating disorder anymore. But the GP symptoms make me scared to eat a lot of the time. I also need partial dentures from the vomiting. I am 32.

I saw your post on the gastroparesis support group on Facebook on the difference between eating disorders and gp. I think I told you a little bit of my story, about how my severe eating disorder caused my gp. The biggest difference for me is that one (the ED) is a battle with the mind and that the other (the GP) is a battle with the body. With an eating disorder I had urges, mental urges, to restrict my food or binge and purge for emotional reasons. With GP the battle is more physical - there is nausea and pain, confusion with being both hungry and full at the same time. But there ARE still emotions connected to GP, like anger and resentment at your body. ('Damnit i love pizza and it's going to cause me to throw up but I'm going to eat it anyway it's not fair I hate this!') The problem I have is drawing the line with that. I can make myself vomit very easily just by clenching my stomach from my years of binging and purging. If i have stomach pain from the GP and know if I make myself vomit I will feel better, do I do it? The emotions attached to our food and body is hard to deal with."

According to National Eating Disorders (http://www.nationaleatingdisorders.org/general-information):

"Eating disorders -- such as anorexia, bulimia, and binge eating disorder – include extreme emotions, attitudes, and behaviors surrounding weight and food issues. Eating disorders are serious emotional and physical problems that can have life-threatening consequences for females and males."

According to the Mayo Clinic (http://www.mayoclinic.org/diseases-conditions/gastroparesis/basics/definition/con-20023971):

"Gastroparesis is a condition in which the spontaneous movement of the muscles (motility) in your stomach does not function normally."


This is a story from Madison, who writes,

"I was bullied all throughout middle school, because I became friends with a girl who did drugs. She would constantly criticize what I ate, and would throw away my food, and we would go to her house so we could look at pro-ana [sic: anorexia] sites. After she got kicked out of school for using drugs, I didn't really have many friends. I was so in my head all the time and just so focused on my eating disorder. It just continued to get worse and worse until my school forced my parents to take me out of school to get a physical because I became a liability to them. Going to high school was even worse.

I would have panic attacks every day and miss probably half the week. I WAS so tired all the time that I couldn't do my homework, couldn't Do my classwork, nothing. I was too malnourished. In 10th grade halfway through I dropped out and did independent study, which I excelled in.

I abused amphetamines, which made me lose weight faster, and would spend all day at the library so I didn't have to eat. Junior year I decided to go back to school but within the first week the panic attacks started again. I had to go back to independent study.

I got into some legal trouble and my therapist told me that to avoid legal consequences, and dying, I should go to treatment. She was on the phone with my parents forever on a Wednesday and by that friday I was in an Inpatient treatment center. They discharged me at 5 weeks, and going to outpatient was too much for me. I wasn't ready to leave.

I started purging to get back into residential. They let me back in for another two weeks which really did a lot for me to break my behaviours. I successfully completed 6 months of treatment. But, I had awful nausea, dizziness, abdominal pain, and many other GI symptoms.

I turned 18, graduated from high school, and went to college to study psychology. The GI symptoms got worse and worse. I wasn't getting any emotional support. I was still depressed and still incredibly anxious and still wanting to die. Every day. I got a puppy who made me so so happy, and the only reason why I'm still here today. February 2014 I was hospitalized and bunches of tests were ran. It was gastroparesis, cause by my eating disorder. I also have osteopenia from malnutrition. I have fibromyalgia. Every day is a struggle."


I want to applaud these women for coming forward with their stories. We are all accused at one time or another of having an eating disorder so we are overlooked and undertreated. Eating disorders can be just as deadly as gastroparesis, but they are both invisible, chronic illnesses so people assume we make them up for attention. I can tell you that some of my family thinks that my illness is in my head. They think I have bad anxiety and that I have made up this illness for attention, despite tests saying otherwise. I know how it feels to be looked down on and not taken seriously by doctors, family, friends, anyone. That's why I wanted to share these women's struggles and their stories. I'd like to share more.


If you would like to share your story as well, I'd be glad to add it to this article. Please send your story to me at emilysstomach[at]gmail.com. Please let me know if I have permission to use your name or if you want me to change it. I have used real names in this article because I was allowed to. If you have any questions for the ladies above, please ask them on my wall on my Facebook page: www.facebook.com/emilysstomach and I'll see that they get your messages.

They are very brave to come forward for their stories for this article. It doesn't matter how they got GP, what does matter is that they HAVE GP and we are all in this together! No awareness, no research, no cure.


EDIT: If you are looking for help or for others like you, I've created a group to help everyone with their feelings: https://www.facebook.com/groups/GPandEDSupport/ I just wanted some place where we wouldn't judge each other and where we could talk about the things that are bothering us that no one else really understands.

Thursday, March 19, 2015

How to Protect Yourself from Gastroparesis Scams

How to Protect Yourself from Gastroparesis Scams

I've been noticing more and more scams that keep popping up in groups I'm in, saying things like if you change your diet and take this pill, your gastroparesis will be cured. A lot of people fall for these scams. I want to prevent that. First off, gastroparesis cannot be cured. It's vagus nerve damage. So, I'm going to spend some time talking about possible things that can slow your motility down even more, like medication, and I'm going to talk about what causes gastroparesis. I would also, at the end, like to offer you ways to protect yourself in case of a scam, because they're all over the place. Just type in "gastroparesis cure" and you'll get youtube videos, websites, all kinds of things. I just don't want any of my friends of my gp family to be taken advantage of because you all mean a lot to me. Without you, I'm not sure I'd have the strength to leave the bed most days. Now, let's talk about this vagus nerve.



That Little Thing Called the Vagus Nerve

Gastroparesis can be caused by a lot of things - abdominal surgery, stomach viruses, diabetes. If you do have nerve damage, the nerve damage will not repair itself. Think of this scenario: you injured your knee playing basketball. You managed to move your kneecap out of joint but kept playing anyway. Then, when you got to the hospital, the doctors fixed your knee but you still have pain. The doctors tell you that you now have nerve damage. If the nerve damage in your knee will never heal, how can the vagus nerve in your stomach ever heal? The nerves that were once functioning aren't functioning anymore.

A pill, diet change, exercise change - sure they can all help manage your gastroparesis but it will never be cured. I'm considering doing a stomach bypass to try and make it so that I can eat before I vomit, tear my esophagus, and bleed to death. So, my doctor is pushing this surgery hard and I'm scared. It's OK to be scared. Gastroparesis may never heal, but you have friends and loved ones who support you. If not, I have a whole list of resources in this blog saying that you do. You can always find me on my Facebook Page: www.facebook.com/emilysstomach. I'd be happy with a "like" too, if you can spare me one. =)


Image taken from: http://www.yoursurgery.com/procedures/duodenum/images/Duod3-A.jpg


Here are some facts about vagus nerves: http://www.md-health.com/vagus-nerve.html


Slower Motility and Gastroparesis Causes

People can't be cured from gastroparesis, except in certain circumstances. There are certain medications that can cause decreased motility function like narcotics, that when you come off of them, your stomach will work again. There are other medications that will do that as well. According to The American College of Gastroenterology (http://patients.gi.org/topics/gastroparesis/) , these are the medications that will slow down motility:

"Narcotics
Tricyclic antidepressants
Calcium channel blockers
Clonidine
Dopamine agonists
Lithium
Nicotine
Progesterone"


Image taken from: http://blog.doctoroz.com/wp-content/uploads/2013/09/pills-multicolored-original.jpg



The website also goes on to state:

"There are many causes of gastroparesis. Diabetes is one of the most common causes for gastroparesis. Other causes include infections, endocrine disorders like hypothyroidism, connective tissue disorders like scleroderma, autoimmune conditions, neuromuscular diseases, idiopathic (unknown) causes, psychological conditions, eating disorders, certain cancers, radiation treatment applied over the chest or abdomen, some chemotherapy agents, and surgery of the upper intestinal tract. Any surgery on the esophagus, stomach or duodenum may result in injury to the vagus nerve which is responsible for many sensory and motor (muscle) responses of the intestine. In health, the vagus nerve sends neurotransmitter impulses to the smooth muscle of the stomach that result in contraction and forward propulsion of gastric contents. If the vagus nerve is injured by trauma or during surgery gastric emptying may be reduced. Symptoms of postoperative gastroparesis may develop immediately, or months to years after a surgery is performed.

It is important to realize that medications prescribed for a variety of conditions may have side effects that cause gastric emptying to slow down. The most common drugs that delay stomach emptying are narcotics and certain antidepressants. Table 1 lists more medications that may delay stomach emptying. If possible, patients having dyspeptic symptoms, vomiting or early fullness should discontinue the offending medications before undergoing any motility tests. Fortunately, gastric emptying resumes and symptoms improve when medications causing ‘pseudo-gastroparesis’ are stopped. It is important to have the names of all your medications recorded and with you when you see a physician for evaluation of gastrointestinal symptoms.
People with eating disorders such as anorexia nervosa or bulimia may also develop delayed gastric emptying. Gastric emptying may resume and symptoms improve when food intake and eating schedules normalize."






Images taken from: http://davaoaccountant.com/wp-content/uploads/2012/11/scam.gif




Here Are Ways to Protect Yourself Against Scammers


I just want you to be able to protect yourself from these scams. We're all lonely, miserable, and this illness is hard to live with. But, we can still look out for each other and not fall prey to these scams. So, if you see one in your group or on a page, please report that person to an admin and/or facebook.


Here are some ways to protect yourself against scams from Scam Watch (http://www.scamwatch.gov.au/content/index.phtml/tag/howtoprotectyourself):


"How to protect yourself. Almost everyone will be approached by a scammer at some stage. Some scams are very easy to spot while other scams may appear to be genuine offers or bargains. Scams can even take place without you doing anything at all.

Most scams need you to do something before they can work. You may send money to someone based on a promise that turns out to be false. You may give your personal details to people who turn out to be scammers. Some scams rely on you agreeing to deals without getting advice first or buying a product without checking it out properly.

The simple tips below will help you protect yourself and your family from scams. Scams can cost people a lot of money and cause a great deal of distress. By following these simple tips, you can protect yourself against scams.



Golden rules

If it looks too good to be true—it probably is.
ALWAYS get independent advice if an offer involves significant money, time or commitment.
Remember there are no get-rich-quick schemes: the only people who make money are the scammers.
Do not agree to offers or deals straight away: tell the person that you are not interested or that you want to get some independent advice before making a decision.
You can contact your local office of fair trading, ASIC or the ACCC for assistance.
NEVER send money or give credit card or online account details to anyone you do not know and trust.
Check your bank account and credit card statements when you get them. If you see a transaction you cannot explain, report it to your credit union or bank.
Keep your credit and ATM cards safe. Do not share your personal identity number with anyone. Do not keep any written copy of your PIN with the card.



Digging a little deeper

Do not let anyone pressure you into making decisions about money or investments: always get independent financial advice.
Read all the terms and conditions of any offer very carefully: claims of free or very cheap offers often have hidden costs.
Make sure you know how to stop any subscription service you want to sign up to.
Be very careful about offers for medicines, supplements or other treatments: always seek the advice of your health care professional.
Remember there are no magic pills or safe options for rapid weight loss.
Beware of products or schemes that claim to guarantee income or winnings.
If someone offers you an investment or other financial service, ask for their Australian Financial Services Licence number: check this with ASIC.
Be wary of investments promising a high return with little or no risk.
Beware of job offers that require you to pay an upfront fee.



Protect your identity

Only give out your personal details and information where it is absolutely necessary and where you have initiated the contact and trust the other party.
Destroy personal information, don’t just throw it out. You should cut up, burn or shred old bills, statements or cards so scammers can not get your personal details from them later.
Treat your personal details as you would treat money: don’t leave them lying around for others to take.
Order a free copy of your credit report every year to make sure no one is using your name to borrow money or run up debts.



Sending or transferring money

Never send money to anyone you are not totally sure about.
Do not send any money or pay any fee to claim a prize or lottery winnings.
Money laundering is a criminal offence: do not agree to transfer money for someone else.
Make sure that cheques have been cleared by your bank before transferring or wiring any refunds or overpayments back to the sender.
Do not pass on chain letters or take part in pyramid schemes: you will lose your money and could lose your friends.



Dealing with a face-to-face approach

If someone comes to your door, ask to see their identification. You do not have to let them in and they MUST leave if you ask them to.
Contact your local fair trading agency if you are unsure about an offer or trader.
Remember that family members and friends may try to involve you in a scam without realising that it is a scam: you should seek independent advice (from a lawyer or financial adviser).



Telephone traps

If you receive a phone call out of the blue, always ask for the name of the person you are speaking to and who they represent.
Do not give your personal, credit card or online account details over the phone unless you made the call and the phone number came from a trusted source.
It is best not to respond to text messages or missed calls that come from numbers you don’t recognise.
Be careful of phone numbers beginning with 190. These are charged at a premium rate and can be very expensive.
Look out for SMS and MMS numbers that start with 19. These are charged at a premium rate (sometimes even for receiving a message) and can be very expensive.



Dealing with suspicious or unsolicited offers sent by email or SMS

Do not open suspicious or unsolicited emails (spam): delete them.
Do not click on any links in a spam email or open any files attached to them.
Never call a telephone number that you see in a spam email or SMS.
NEVER reply to a spam email or SMS (even to unsubscribe).



Internet tips

Talk to your internet service provider about spam filtering or, alternatively, purchase spam-filtering software.
If you want to access an internet account website, use a bookmarked link or type the address in yourself: NEVER follow a link in an email.
Install software that protects your computer from viruses and unwanted programs and make sure it is kept up-to-date.
Beware of free websites and downloads (such as music, adult sites, games and movies). They may install harmful programs without you knowing.
Check the website address carefully. Scammers often set up fake websites with very similar addresses.
Never enter your personal, credit card or online account information on a website that you are not certain is genuine.
Never send your personal, credit card or online account details by email.
Try to avoid using public computers (at libraries or internet cafes) to do your internet banking.
Do not use software on your computer that auto-completes online forms. This can give internet scammers easy access to your personal and credit card details.
Choose passwords that would be difficult for anyone else to guess.



Protecting your business

Never give out or clarify any information about your business unless you know what the information will be used for.
Never agree to any business proposal on the phone: always ask for an offer in writing.
Try to avoid having a large number of people authorised to make orders or pay invoices.
Always check that goods or services were both ordered and delivered before paying an invoice.
Make sure the business billing you is the one you normally deal with.
If you are unsure about any part of a business offer, ask for more information or seek independent advice.



Keeping children safe online: Cybersmart

The Cybersmart program is a national cybersafety education program managed by the Australian Communications and Media Authority (ACMA). It provides a comprehensive range of information, resources and presentations designed to meet the needs of children, parents, teachers and library staff.

The ACMA Cybersmart website is home to all its cybersafety resources, research and activities. For more information, visit Cybersmart or contact the Cybersafety Contact Centre on 1800 880 176."