My mom had early-Alzheimers before passing away in 2015. I know this affects so many people. Are you concerned about #MemoryLoss with a loved one in your life? New research options may be available. Researchers are testing potential new treatments that may help slow the progression of early #Alzheimers. If you are concerned about your #memory loss or someone in your life, you may be able to help by volunteering for a clinical study. If you have problems with memory or forgetfulness, you might have early Alzheimers. A new Clinical Study is currently enrolling to evaluate an investigational drug. No-cost study drug. See if you qualify with a brief survey. Learn more.
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Reality Rally Fundraiser to help Michelle’s Place w breast cancer patients.
Please help us raise funds for Michelle’s Place to help them support all the clients who need services during the fight of their lives with breast cancer. Any amount is greatly appreciated. This is my donation link, https://
https://shouttag.com/!/
Reality Rally is the biggest gathering of Reality TV Celebrities in the country! And they are all coming to Temecula to help support a deserving charity; Michelle’s Place. #RealityRally #KenAndBarby #RealityTV
10 ACTIONS TO MAKE LIFE MORE POSITIVE AND UPLIFTING FOR YOURSELF
by BarbyIngle
written by BarbyIngle
10 ACTIONS TO MAKE LIFE MORE POSITIVE AND UPLIFTING FOR YOURSELF – by Barby Ingle
- Choose happiness.
- Create goals and more towards accomplishing them.
- Get involved in projects that you can be interested in and successfully complete.
- Keep yourself surrounded with happy people.
- Look at the bright side of challenges.
- Motivate yourself.
- Practice meditation and controlling your thoughts.
- Smile big and often.
- Visualize success.
- When anxiety and stresses are high, turn it over to God.
When you live with chronic illness and pain dental health becomes even more important. Here are a few of the tips I have learned over the past 20 years.
- Ask for “close your mouth breaks” if needed.
- Brushing after vomiting can break down the enamel.
- Have your teeth cleaned at least twice a year.
- It is important for your dentist to know about CHRONIC PAIN.
- Oral care starts at home.
- Poor brushing can come from a loss of range of motion or just not feeling good enough to brush or brushing causing increased pain.
- Use an electric toothbrush to achieve proper brushing. Brush lightly and at the gum edge (where the teeth and gums meet)
- Your dentist needs to know that you are an CHRONIC PAIN patient, all medications you are taking, any allergies, and that your vulnerability to infections.
Considering the most recent celebrity to share that she lives with chronic pain – Lady Gaga, and how people jumped to conclusions as to what she is living with, I decided to point out here that to date, she has not said what her diagnosis(s) is besides chronic pain, if there is one that is more specific. She did say on an Instagram post dated May 31, 2015, “I still deal with bone inflammation from my hip injury two years ago”. She has also announced that she is dealing with PTSD from learning to live with chronic pain in our society and the struggle to maintain pain management.
Her postings on Instagram about having treatment for chronic pain seemed to spark rumors and make believe as to what is really going on with her diagnosis. I have seen ‘stories’ that say she has fibromyalgia, EHS Electrohypersensitivity – cause from exposure to microwave radiation from wireless technology, autoimmune diseases (lupus), synovitis – a painful inflammation of the joints, and others.
Here is the issue, Gaga herself only spoke of living with chronic pain for the first time about a year and a half ago, and then again, the last week of November 2016. She only has said it is chronic pain. Please stop putting a label on what she has until she announces it herself. We all want a spokesperson for our disease, but I am cautioning you from applying a label to her until she announces what it is she is living with. Also, consider that chronic pain is a possible primary diagnosis and they may be her actual diagnosis.
There are many rumors out there in the social media realm. Take Lady Gaga for example. She posted on her Instagram that she was having a treatment for chronic pain a few weeks ago. She had already let us know years ago, that her aunt died of complications to Lupus just before her 20th birthday. Lady Gaga’s most recent album is called Joanne and she created a song in her honor as well (Joanne). Her parents own a cozy little restaurant in New York City named after Joanne – Joanne Trattoria where I recently dined with my husband. It is a homey Italian-American trattoria owned by Lady Gaga’s parents & cookbook author Art Smith. Lady Gaga’s father Joe Germanotta recently released a cookbook tittle Joanne’s. It includes recipes they serve at the trattoria like celebrity Chef Travis Jones’ Nutellasagna recipe. I learned that their head Chef Travis also lives with chronic pain. Although Lady Gaga has said that her aunt died from Lupus and is raising awareness for the disease she has not stated publicly what she is contending with herself. She has only publicly stated that she has chronic pain and a few of the treatments she has used to help her with daily living to lower the pain.
When we put a label on anyone’s disease we start expectations on how they should live, what treatments they should do, what their prognosis is. We do this far too often, to ourselves, our specific condition community, our created view of how others outside of the pain community see us.
There are other celebrities that have come forward through the years with their medical conditions including Michael J Fox with Parkinson’s, Paula Abdul with reflex sympathetic dystrophy, comedian and social media star Nicole Arbour with fibromyalgia, Nick Cannon with lupus, and Morgan Freeman who has chronic pain. Each has had different receptions on that they are trying to live with. Pressures from their community to talk about it, yet when they do criticism for being able to make something of themselves despite their disease. When other celebrities/personalities see the reception can be awful in that disease community and even lose them jobs from those that don’t understand it is very discouraging for them to then speak up.
If we stop putting stigmas and labels where they don’t belong it will help the impressions we give others who do not live in pain. At this point most health people do not understand the daily challenges of people living with a chronic pain disease or relate to us. Jumping to conclusions about how another patient should be or act, or deciding for them what their diagnosis should be is not helpful. Imagine how uncomfortable it would be if someone told you that you must share your personal and detailed story the way they want you to share, or tell you to act a certain way so others don’t get the wrong idea about how bad a disease can get or possibly worse they make up your story for you.
Let’s work to not put our expectations of what others living with chronic pain should or shouldn’t look like. We all will look different, have different function levels, treatment options that are right for us, etc. with one in seven worldwide living with chronic pain diseases. It is a blessing when someone with celebrity status does speak up and share, but it is not a requirement for them to do so. They need to feel support from the community they are a part of and if we isolate them we cut them off, and future spotlight makers, from their willingness to share and help with education, research, and awareness.
There’s Such a Hysteria Going On When It Comes To Opioid Medication
by BarbyIngle
written by BarbyIngle
There’s Such a Hysteria Going On When It Comes To Opioid Medication
By Barby Ingle
A few weeks ago I got a phone call from a ‘pain patient’ who said he was from California. He kept referring to questions that didn’t make sense based on his reported pain story. He ended his phone call saying he needed me to make sure that everyone vote for (his candidate of choice). I laughed first as I don’t talk about where I stand politically and I really don’t care who anyone else votes for. I care about other issues such as access to proper and timely care for patients around the world. My verbal response was ‘I don’t talk about politics and I don’t promote any one candidate publicly or privately’.
One of the other things I did say to this caller was “There’s such a hysteria going on about those who have died from overdoses and from patients who feel that opioids are helping them but they have or may be taken away. We need to find a way to address prescription drug abusers and chronic pain patients at the same time. We cannot forsake one for the other.” I have made similar statements in other media interviews. The first part of my sentence has been used in recent AP stories that have run, leading me to believe either my phone was tapped, or this ‘patient’ was lying about who he was and he was trying to get quotes for his story. The thing is, I would answer the same to the patient as I would to the reporter. My beliefs are my own, no one can buy them. You could change my mind with new presented information, but you don’t need to pay me to change my mind, just show me believable evidence.
It’s like the doctors who call me saying, I have a cure. As soon as you say cure, I am not going to believe you. All means all and that is all, all means. So slow down track stars and check out why I think that there is a hysteria going on, both sides included.
I strongly believe that the patient and their properly licensed providers should be making the decisions for what is best for the patient. I also believe that we need better access to care. And as I state in my book Remission Possible; Yours If You Choose to Accept It, published in 2011, “opioids activate glia”. When you have a nerve pain disease like I do our glia is already activated due to neuroinflammation. Opioids make it worse, they make us not care, but they also make our condition worse on a neuroinflammation level. (You can look up Dr. Linda Watkins for more scientific explanation on this).
We need to use a multimodality approach to chronic pain management over monotherapy (one treatment type such as only using opioids). Having lived with chronic pain for nearly 20 years and 14 of which is having diagnoses including reflex sympathetic dystrophy, arthritis, TMJ disorder, hypothyroid, ischemia, seizures, and thoracic outlet syndrome I am pretty sure I know what living life with chronic pain is like. I have tried many different treatment options. I have avoided opioid use since realizing it didn’t help my severe nerve pain, it only made me not care. I found a way to go from wheels (wheelchair) to heels (walking). Am I out of pain? No, I am not, but I have found effective treatments that work for me to help management my pain, and out of the top 5, 1 is a medication, and it’s not an opioid or NSAID, both of which have caused me additional challenges such as OIC and internal bleeding.
I also advocate for other patients. In doing so, I have heard from thousands of patients (of the millions who do use opioids on a daily basis) who swear by two things. First, they have no other treatment options being provided or access to those options due to costs. Secondly, there is no other option that they have been able to try that is successful or as successful as the opioids they use daily to have some sort of improvement in their daily life.
I know that there is not good evidence – based on scientific scores either way. Every test, needs assessment, research study can be torn apart by the ‘other side’. For me it comes down to, if I have something that helps me live a better quality life and function better, I want to have access to use it. For me that was not opioids, but that doesn’t discount the millions who do say it is helping them live. Or even those who were denied access to care, (any care including opioids) and they decided to commit suicide, or those who have the addictive gene causing them to abuse medication and other things in their life, some to the point of losing their life. I have lost many friends to suicide and a few to addiction. For those who were in pain and could not get access to proper and timely care, I don’t blame them for wanting to go to heaven and be out of the daily pain we feel here on earth. It is not my choice, but I do understand how someone can get to that point and want to die because they are not being helped here on earth. For those who use illegal drugs (and if you are abusing prescription medication that is illegal mind you, according to our governing laws) there is help and hope for you as well. It is becoming more and more available over the recent years. I can’t watch TV on any given day and not see the advertising for the rehab centers and help for you once you are ready to get it.
So where do we go from here. I believe that we do need more cautious prescribing and in bringing the opioid crisis to an end for abusers of prescription medications. I believe that opioids are an extremely important class of medication, especially when used to ease suffering at the end of life and when used short-term for severe acute pain. I believe that we need more efforts in abuse deterrent options both in medications as well as in lifestyle changes such as mindfulness and psychotherapy for abusers. Will ADF’s and behavioral techniques stop abuse? No, if an abuser doesn’t have access to one they will find a way to get the chemical change they seek. But will it help, yes.
I also strongly do not support legal constraints on clinical decision-making. Again, I believe it should be between the patient and their providers as to the care they receive. I believe that opioid prescribing can be reduced by providing accurate information about medication risks and benefits. I hope that providing all humans with the information on medication risks and benefits and letting them and their provider make the choice will help stop the hysteria on both sides. I think that we all have more common ground and if we could find a way to help both abusers and chronic pain patients get the proper and timely access to the care that they need that (and all humans for that matter), that our goals would be accomplished faster and safer. Let’s not forsake one for the other.
As the president of the International Pain Foundation our goal is education, awareness, social events and access to care. I have never spent any iPain funding on giving it to any legislators or lobbyist. Our funds go to our awareness and education projects. Our access to care projects are not funded, it is all done on volunteer time, effort, energy and story sharing by patients. I am 100% volunteer as are all iPain board members, delegates, and volunteers.
For the past two years iPain has been focused on creating the Music Moves Awareness project to accomplish our mission. Over 95% of the raised funds in 2015-2016, were used on our Music Moves Awareness projects in 2015-16. You can see the music video and purchase the song HOPE IS TRUE at www.hopeistrue.org The Music Moves Awareness project involves featuring patient stories, (We have 24 featurettes with a variety of pain conditions and using many different treatment options), iPain Webinars, HOPE IS TRUE music video/song for the public, and the 12 steps to patient empowerment. You can check out GuideStar to see our 990’s – International Pain Foundation is a dba so you will find us under Power of Pain Foundation, Inc. tax id: 47-3080556.
International Pain Foundation (iPain) supports the notion that chronic pain is a real and complex disease that exists either by itself or it can be linked with other medical conditions. As a charity, it campaigns for effective pain care through an array of treatment options, which are widely inaccessible. It also underlines that chronic pain is an unrecognized and under-resourced public health crisis with devastating personal and economic impacts. Most importantly, it operates under the belief that allowing people to suffer with unmanaged pain is immoral and unethical.
Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.
More information about Barby can be found on her website.
There is absolutely no doubt in my mind that there is a lot of misinformation out in the pain community. I hear it in phone calls, emails, and see it on social media posts. Last week I was speaking to a woman who helped start a new fb group. She wanted me and International Pain Foundation to help support their upcoming survey after telling me it was just like the one the iPain and Pain News Network did together a few months back, but different. She asked if she could cite our results in the meantime to help get a legislative bill blocked. She said much more. I let her know as long as she cites our survey she could use our results. She went on to tell me that opioids had been made illegal in multiple states for everyone except palliative care patients. Knowing that this was not true, I asked which states. She named Virginia and New York as two of the examples. There is no such law that makes opioids illegal for all but palliative care patients in any state. I record most of my phone calls and when this one was done, I couldn’t believe what I had heard her say so I went back and listened again and again. Where does this misinformation come from? Its not helping.
Ever wonder, am I strong enough to make it on a trip out of town? In traveling nowadays, there are overcrowded terminals, flight delays, and security with which we have to contend. There are ways to make traveling easier and less stressful for chronic pain patients. My first suggestion is to pack your medications in a carry-on bag. If your luggage gets lost, you won’t have to worry about where or how to get your medications. As travel terminals are hectic and people are at a frantic pace, arriving early so you can go at a slower, more relaxed pace will make the hassles of dealing with disabilities manageable when traveling. Your goal is to make it to your destination on time, in a low pain level and in a good mood. When you decide to make a trip, it is best to plan ahead. I use the Internet to get destination information. I check out the floor plans of the airports I am coming and going from, and what types of foods are available in the terminals. I also request handicapped services from the airline, bus depot, car rental company, and hotel all ahead of time.
My mother is on oxygen and has had a few troubles traveling because of it. If you are on oxygen, let the airline know 30 days prior to travel or as soon as you know that you will be flying. In-flight oxygen needs to be prearranged, and there is typically a charge. Then call 24-48 hours prior to your flight to confirm the oxygen arrangements. At the airport, if traveling alone, bring tip money. I try to bring one-dollar bills and tip a dollar for each bag that I am assisted with, both when I am departing and at my destination. I also pay the person pushing my wheelchair one to two dollars for their assistance. I also have a scooter, so I do not always have to pay for the wheelchair assistance. It is not mandatory to pay for help; however, the person pushing you often works for tips only or tips with a low wage. Be sure to let them know if you want to make any stops to use the restroom or purchase food while they are assisting you. When they bring you to your gate, ask to be “parked” at the door or the start of the line. Make sure that the airline person sees you. If you sit off to the side, they may miss you, and you will not be able to take advantage of pre-boarding. If you need extra time and assistance, you may have a problem.
Typically, the flight attendant or ground crew comes over to me and moves me up in the plane if I have a seat towards the back, and they ask me if I need any assistance walking, or if I need an aisle chair to get to my seat. I do not tip the attendant who brings me down the jet way. When I pre-board, once on the plane, if I need to take medication or I am nauseated, I ask for a small glass of water. I also board with the first group, when they call for people who need assistance. If they do give you a small glass of water, they must take it back before the plane takes off; make sure you drink what you need when they give it to you.
Let them know while in flight if you need assistance in using the restroom or need blankets and pillows for comfort. When you arrive at your destination, stay in your seat until your wheelchair assistance has arrived. They typically ask you to wait until the other passengers unload so that you do not hold them up or so that they do not bump against you and it may cause you further injury. At baggage claim, if you are alone, ask the assistant to get your luggage and to bring you outside to meet your party. Once you are in a place you do not need assistance, give them their tip and thank them, so they may go help other travelers needing assistance.
I wrote this a few years ago but it all still applies today.
Colorado Department of Health Care Policy and Financing (adf review)
by BarbyIngle
written by BarbyIngle
March 21, 2016
Kelli Metz
Clinical Services Pharmacist
Colorado Department of Health Care Policy and Financing
1570 Grant Street
Denver, CO. 80203
RE: April 5 PDL Drug Class Review (Abuse-Deterrent Formulations)
Dear Kelli,
On behalf of thousands of Coloradans who live with life-altering and debilitating pain, we urge you to protect and enhance access to safe medications. It is critical that Colorado Medicaid cover the full range of treatments available for pain in the safest possible way which includes covering recently approved “Abuse-Deterrent Prevention” (ADP) formulations. This is incredibly important because there is a higher amount of abuse in the Medicaid population than commercial population.
Colorado presently ranks at the top of the list in terms of misuse, abuse, and diversion of controlled substances, particularly opioids. We believe anything that can be done to ensure safety and optimize efficacy of these medications should be strongly considered.
When prescribed and monitored appropriately, most patients do extremely well on these types of medications, and experience improvements in pain, function and quality of life. There are instances, however, where medications are used inappropriately. The disastrous consequences of inappropriate use can lead up to and include death. In fact, over 16,000 of roughly 22,000 prescription drug overdose deaths annually are associated with opioids.
The path to opioid overdoses, in many cases, begins with the misuse of prescription pain killers. These pills are most frequently passed along by family or friends or sold on the street and then crushed, melted or otherwise altered to get a more powerful effect. Over 70% of abusers of prescription pain relievers got them from friends or relatives. The slow release over time that occurs when the pill is swallowed whole – can be felt at once when the pill is altered for snorting or injection. A useful pain killer is thereby instantly turned into a potentially lethal narcotic.
While it is not possible to entirely eliminate this occurrence, It is our belief that abuse-deterrent formulations should be part of a multi-faceted approach to decrease abuse. Although ADPs do not prevent users from simply consuming too much of a medication, they may help reduce the public health burden of prescription opioid abuse in Colorado by making it harder to abuse in other ways.
The consequences of opioid abuse, including emergency room episodes, treatment admissions and overdose deaths are staggering and it is a behavior that is starting in adolescence.
- 1 in 4 teens reports having misused or abused a prescription drug at least once in their lifetime.
- Nearly two-thirds of American teens who abuse pain relievers say they got it from family members and friends.
- This behavior has deadly consequences: overdose deaths involving prescription opioids quadrupled over a decade from 4,030 deaths in 1999 to 16,651 in 2010.
- Due to the increase in prescription drug abuse, drug overdoses now exceed car crashes as the number one cause of accidental death in the United States.
The Food and Drug Administration (FDA) wrote in a 2013 ADP guidance for drug makers that the “FDA considers the development of these products a high public health priority.” In fact, in February 2016 the FDA announced that they will now mandate that any new opioid go before an outside committee of experts, unless the product has abuse-deterrent properties.
Additionally, a study published in the Journal of Pain Medicine found that the first ADP formulation of oxycodone was associated with a $430 million reduction in medical costs, an almost $100 million reduction in criminal justice costs and a $476 million increase in workplace productivity. Results such as these have prompted five governors, 29 attorneys general and 22 members of Congress to oppose the production of opioids without the use of ADP.
Colorado does not have ADP formulations available on their formulary even though 42 states currently do. A Medicaid patient must try and fail on an opioid without abuse-deterrent properties before they can get an abuse-deterrent medication, even if their physician feels that an ADP medication is best for the situation.
We believe in the sacred doctor patient relationship and request that Colorado have an ADP available for each class of medication. It is our hope that these issues be taken into consideration when Colorado’s P&T Committee meets on April 5. Should you have any questions please contact the International Pain Foundation at 480-882-1342.
Sincerely,
Barby Ingle
President
International Pain Foundation
Study for People with Cushing’s Syndrome – http://curec.lk/2024gOt
This trial is testing the safety and effectiveness of an investigational drug for the treatment of Cushing’s Syndrome. Under the supervision of qualified physicians, cortisol levels and symptoms of Cushing’s Syndrome will be closely followed along with any signs of side effects. More about the study: The study drug (COR-003) is administered by tablets. There will be 90 participants in this trial There is no placebo used in the trial If you are interested, please find the full study details and eligibility criteria listed here. Eligibility Criteria: Participants must: be at least 18 years old have been diagnosed with endogenous Cushing’s Syndrome by a medical professional (not caused by the use of steroid medications) Participants must not: have been treated with radiation for Cushing’s Syndrome in the past 4 years be currently using weight loss medication have been diagnosed with uncontrolled hypertension, some forms of cancer, adrenal carcinoma, Hepatitis B / C, or HIV Please complete the online questionnaire to check if you’re eligible for the trial. If you’re not familiar with clinical trials, here are some FAQs: What are clinical trials? Clinical trials are research studies to determine whether investigational drugs or treatments are safe and effective for humans. All new investigational medications and devices must undergo several clinical trials, often involving thousands of people. Why participate in a clinical trial? You will have access to investigational treatments that would be available to the general public only upon approval. You will also receive study-related medical care and attention from clinical trial staff at research facilities. Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future. Learn why I’m talking about Clinical Trials – http://curec.lk/1Gb4toG