Pain
It’s my birthday! Yah! I celebrate all month long and I hope you celebrate with me this year. I am turning 47 this month. Since childhood I didn’t like the number 47, so I am hoping that I can make it a great year despite the number. So I am going to take my dad’s advice first…
“DO YOUR BEST, THAT’S ALL I ASK.”
One of the few rules I had for the kids was to do their best in everything they attempted to do. If it was not worth doing their best, then why bother doing it at all? It is like showing up on time. If it is not worth your best effort, do not bother. The enjoyment comes from the effort and the success that comes with the accomplishment. – Jim Ingle, Sr.
Second, I am fundraising for International Pain Foundation. This charity means the world to me, but if we can keep it going through fundraising, than we cant help as many people. I believe it is my gift from God, my purpose in life to help others so they dont have the struggles I have had with my health. Your donation would mean the world to me!
It is also NERVEmber! This is the 11th year of this project that I created. You can join me in our efforts by hashtagging #NERVEmber and #GoOrange on social media and sharing your stories! You can also check out more info at www.nervember.org.
Happy Birthday to me!
A snippet from our book (Ken & Barby) Real Love and Good Sex on ways we found to rekindle romance when we need to do so despite living with chronic pain conditions. Prior to my relationship with Ken I learned that you don’t have a marriage without sex unless both partners honestly feel happy and satisfied in their relationship without sexual intimacy. Finding a partner to agree to a life with no sexual intimacy is rare. It is true that I don’t feel sexy every minute of every day due to the pain. I learned there are ways to have a sexual relationship that is romantic even through the pain I live with on a daily basis. I realized having a sex life helps me with the pain levels.
If I was to lose my sexual connection with my husband I would work to regain it. I would start by talking with Ken. As any tough discussion I would start the communication process in the living room or in a neutral setting. I found we have the best conversations when ‘I’ is used to describe my feelings. Doing so helps keep stress, pressure and anxiety off him and vice versa. An example is, “I love when you hold me close; it makes me feel cared for”. This is a positive way to state how you are feeling versus a comment like ‘You must not love me because you never hold me close’.
Many times rekindling the romance is successful with proper communication. Maybe your partner is afraid of causing you pain. Keep in mind the things done out of kindness are a way of showing affection. These things can’t be overlooked or taken for granted. Let them know you are still interested and willing to have intimacy. This can put your partner at ease. It is easy to jump to conclusions as to why your partner has stopped touching you. The reason is usually not that they lost interest in sex or in you. It is usually a lack of communication and can be fixed.
Ken and I had to have the conversation, what would make this more enjoyable for you? We had to experiment and try new things and get out of the ‘norm’ of traditional sex positions because it was too painful and not enjoyable for me. I believe that people with chronic pain, and those who love them, don’t need to resign themselves to a lifetime of celibacy. The subject can be approached from several angles, but the main lesson from health professionals and strong couples is communication.
Communicate with your partner and your doctor or psychologist when needed. For us, our primary care doctor brings it up at every appointment. But if your doctor doesn’t bring it up for you, don’t be embarrassed to bring it up to them. They may have some great suggestions for you. They may be able to relate the lack of sexual desire to a complication of a medication you are taking. The provider can also validate that low libido is a common consequence of chronic pain.
Often times I run into patients who have been treated poorly or perceive they have been treated poorly. I have included this section on the Patient’s Bill of Rights so that you know what to expect from your doctor. Doctors often times see a large number of patients each day. If you feel that some doctors are not listening to you, not understanding you, or being rude, try talking to them about it. Often times they are just running behind schedule, have something personal in their life going on, or even are upset that they cannot help you more. Your reaction to what you perceive can play a part in the care you receive. The more respect and consideration you can give the healthcare staff, the more compassionate that they can be for your situation. Considerate and respectful care means that the healthcare professional is understanding, caring, and thoughtful. They show these attributes by being polite, considerate and courteous. You should also show them respect even when you are feeling bad or not heard.
You have a right to your records. I order my medical records from my providers after each visit. In some states, they are able to charge you for such copies. In Arizona, where I live, the law states that if you are using them for future care, they cannot charge you. Check with your state for the law on this practice. I keep all of my records so that I can bring the ones needed to new doctors and can also refer back to them to double check a medication for past reactions and usefulness.
You should also check your records for mistakes. Healthcare professionals, like all humans, also do not always take perfect notes or a person transcribing their notes into your file can make a mistake. It is important to do your own research about recommended treatments and you can refuse care in most cases. Your healthcare provider needs to inform you of the risks you are taking by not following the recommendation they have made. If you are not comfortable, speak up prior to service.
Records are confidential unless there is a risk to you or others or in a court case where they are used as admissible evidence. There is more in your records than medical information. Doctors write in their records more than just physical assessments. They write down your demeanor, if you were dressed appropriately, if your hair is brushed, if you were upset, anxious or combative, and so on. It is in their opinion and discretion as to how they perceive you. In 1996, the United States Department of Health and Human Services (U.S. – D.H.H.S.) issued a privacy rule that was finalized by the Secretary of Health and Human Services in 2000. The U.S. – D.H.H.S. is the official central governmental hub for all Healthcare Insurance Portability and Accountability Act (HIPAA) issues including rules, standards and implementation guides. Keeping HIPAA privacy laws enforced can assist you in receiving proper care and from letting outsiders, like your employer or others, know your personal health.
As a patient, I expect to receive attention and respect from my healthcare providers. I have the right to considerate care and to expect that they will follow through. If the provider does not, then I find a new one, which I have had to do in the past. I have had a doctor say, “I know what you’re trying to do, and you will not get away with it.” He did not perform any tests on me, but when records were ordered, it turned out that there were results from a test that I did not undergo. When either the provider or patient shows disrespect, proper treatment will be hard to accomplish. When communicating with my providers, I hope that they will give me complete and current information but do not always expect it. I have learned that it is also important to research information on your own.
Your doctor should be expressing his final diagnosis, proposed treatment and expected prognosis in non-technical language so it is easy to understand. In some cases, I have had doctors share the information with my husband because they could see that I was not able to concentrate due to the pain and it was important to have the information so that we could better prepare for what was to come. After this information is shared to my husband, or me we do our own research. In the beginning, I did what every doctor told me to do whether it was something I wanted to do or not. I learned through trial and error that I have the right to refuse any medical treatment. I listen to the doctor about medical consequences for my decision but no longer expect the doctor to make any final decisions for me.
Before a procedure, I want to know why the expected procedure would be an option, what are the benefits and drawbacks, if there is anything else available that could give me similar benefits with fewer risks. I also need to know if my doctor will be bringing in any assistance for the procedure, and how many times the doctor has performed this procedure on other patients. I also want to know how long the recovery is and what is entailed in the recovery. Will it be a few days or will it be months of physical therapy?
I like to know if the procedure is experimental. For instance, the Radiofrequency Ablation I underwent 36 times, is considered experimental by insurance for RSD/CRPS/CPS. Most treatments for RSD are experimental because there is not one thing that “cures” it and insurance company caseworkers are not always on top of what specific procedures are helpful for a patient. I have had to write letters and have my doctors write letters to explain why a particular procedure or medical intervention is appropriate for me and fight to get coverage. I have been in a situation where a doctor has not done many of the procedures or wants to perform research or a biopsy to share the informational aspects with others. I have signed papers to release some of my records for this purpose and have had students attend some
Adapted from The Pain Code; Walking Through the Minefield of the Health System – Patient Journal by Barby Ingle
For those who have been wondering where to get my books, you can check them out on Amazon!
Check out Author Barby Ingle’s books on Amazon. She has worked tirelessly together with the International Pain Foundation, a Non-Profit charity, to advance pain patient rights and care. She does this through information events, education materials, and mentoring support. Barby has writing articles for multiple monthly newsletters, been featured as a cover celebrity story in Magazines and been interviewed on multiple local and national television and radio shows over the years. Barby speaks at various medical conferences around the country on being your own best advocate, patient rights, motivational, setting expectations, inspirational views, access to care and more.
- RSD In Me
- The Pain Code Book
- The Pain Code Journal
- ReMission Possible
- I’mPossible (co-authored)
- Aunt Barby’s Invisible, Endless Owie (co-authored)
- Real Love and Good Sex for Pain Patients and Their Partners (co-authored)
- Wisdom of Ingle (co-authored)
- From Wheels to Heals
She inspires and motivates patient and public alike. Barby leads efforts through works with legislators from multiple states on patient rights, and has spoken for many groups such as the American Pain Foundation, Academy of Integrative Pain Management, Pfizer Pharmaceuticals and Medtronic. Barby is committed to be the face of pain through rising awareness in the public and healthcare field as well as being a strong advocate of patient rights. More at International Pain Foundation
Fresh off of a return from rare disease week in Washington DC I am excited to march into March with preparations for our next edition of iPain Living Magazine (www.iPainLiving.org) and getting set for HealtheVoices conference in April.
As for Rare Disease week… it was full of advocacy meetings, education, and even a visit to the NIH. You can read my March article for Pain News Network for more details on all of the activities of Rare Disease Week 2019.
HealtheVoices™ 2019 will be a true three-day event, including opportunities to interact with your fellow advocates and hear from experts and each other. If you are not able to make it to HealtheVoices you can participate virtually. Check out their website link above for more details and information. Over the weekend, we learn about many aspects of advocating online in the health community. We hope you will leave with new knowledge and an expanded network of engaged allies who advocate for a variety of health conditions.
March is my month to prepare for April and May advocacy events as well as rest up and make sure I am taking care of myself and health so that I can function as best as I can during the 3 days in April and 4 days in May where I have events. As a chronic pain patient this is why its so important for me to organize and spread events out so that I do do a few days at a time and make the impact I would like to in such a short amount of time using the short amount of energy I have, putting my energy penny principle in full effect!
On A Scale of 1 to 10; The Silent Epidemic
Chronic Pain affects 1.5 billion world wide – This film takes the viewer on a journey across North America, exploring various holistic therapies, modalities, mind body connections and lifestyle approaches to better deal with this crucial issue. In the process, they’ve interview top experts who often challenge our traditional beliefs around chronic pain and open our minds to our bodies’ innate power to heal. I was one of those experts interviewed and am excited to see the film have its premiere in March 2019 in Canada and June 2019 in Los Angeles, CA.
A message from the producer
“Governments are putting pressure on doctors to reduce or stop prescribing opioids in cases of chronic pain without offering any alternative. This only alienates people who are suffering, and leaves them scrambling to find solutions. With this film, I want to give them hope. We are living in extraordinary times when cannabis is being rediscovered for its medicinal properties all over the world, mind body medicine is getting more and more validated, new therapies are emerging like Floating, sound and light, virtual reality… We are moving away from a Newtonian concept of medicine to Quantum Physics and Epigenetics and we are discovering the power of our emotions and our minds to positively affect our lives.” – Jennifer Unruh, Producer
If you would like to order a DVD copy or host a showing you can still support this important project by clicking here.
It was a pleasure working on this film with other great experts and also being apart of their amazing conference in 2018. This film will be helpful for the public as well as anyone seeking solutions for chronic pain. All treatment options are on the table. What you decide to do for the chronic pain condition(s) you are living with should be decided between you and your care team. I am excited the filming portion has wrapped and that the two year journey to create this film is moving onto the next steps of helping others.
You can get any of my books here – Barby’s Books! Below is a review of my book The Pain Code; Walking Through the Minefield of the Health System
The Pain Code Book Review Melissa Lucero, Pain Patient, Mother, and Advocate
Patients all over America have been struggling to get good healthcare for chronic conditions. These patients, including myself, are suffering the pitfalls of the healthcare system. The sufferers of poor healthcare range from the patient to their family, providers, and millions of taxpayers.
In most chronic care situations, we are not taught self-advocacy skills. So, we do not know our rights or responsibilities as a patient. For this terrible situation to stop it is going to take a combined effort on the part of many people but it starts with us becoming informed, proactive, and organized. Excellent, prevention programs, access to care, and learning the tools to take care of ourselves between appointments will go a long way towards ending this crisis in our society.
Barby teaches these advocacy skills to the reader, so you are better prepared as a patient. You must be prepared and organized for your situation to receive the best healthcare possible. The topics are covered in a straightforward, non-technical manner, which allows you to understand quickly the fundamental principles of walking through the minefield of the health system.
This book is good for anyone going through a chronic condition or a caregiver to a chronic patient in the United States
The Pain Code; Walking Through the Minefield of the Health System – When it comes to living, the best life you can when faced with a chronic care condition every person has choices. It is a matter of finding the right fit for you. The patient can either let the disease run them or sort through the system and take control of the disease. Coping with a chronic condition takes hope and self-awareness. Through the author’s struggles and finding her way through the health system for the past 10 years, she gained knowledge that she passes on to the readers of this book. Getting organized is very important. It will take work in the beginning but it gets easier as you go. You can also save yourself more pain and challenges down the road by being organized with your approach to treating your chronic medical issue. Topics covered include types of pain, depression, become an expert on your illness, organize your healthcare, treatment options, financial challenges, disability resources, challenges with insurance, finding community, create your oasis, and living well with chronic pain.
It’s NERVEmber 2018!!!!!! I remember flying on the plane back in 2009 during Oct. seeing a sea of pink everywhere and wishing that it was ORANGE! I new I needed to come up with something that could be remembered. By the time I got off the plane I had a plan set. Although Ken (my husband) said lets do PAINuary in January… I vetoed that idea and we started running full speed with the plan to implement the NERVEmber project. We have had over millions of interactions over the years from all over the world and new people learn about it every year. I love seeing the month of Orange posts on social media, the legislative support through proclamations and the awareness that NERVEmber has raised for so many nerve pain diseases over the years. Thank you all so much for join me every NERVEmber for the past 9 years to educate and raise awareness of RSD, CRPS, Nerve Pain, Neuropathy, Diabetic neuropathy, burning mouth, neuralgia and so many more! To see how the program is expanding and even that there are imitators out there shows me that I am on the right track to continue to grow and make a difference each year! Thank you for using #NERVEmber and #GoOrange for 2018 and thank you to Glen Shurtz for stepping up to be the director for the project the next two years. I love the simplicity of #GoOrange this NERVEmber!
This year we also have brought back Comic Pain Relief Show and it will take place in Tempe AZ on Nov. 18th. Which is my birthday 🙂 whootwhoot!!!!!!! For more details on the Hero of Hope awards check it out here
I am also hosting a birthday fundraiser to help new pain patients with resources and tool kits for the next year. You can donate here!
Thank you for your love and support!
Hope is True, Barby
Earlier this year I participated in a health chat and thought this was interesting and would be of interest to you all as well. Blessings, Barby Ingle
How is Apple’s plan for health records truly altruistic and game-changing or just a flash in the pan? I believe Apple’s plan for health records is not altruistic, it might be game-changing, but it is to make money for Apple and may even be a flash in the pain. Do you know how many companies are out there already doing EHR? A lot and more coming on line all the time. Due to healthcare laws, EHR’s dont talk to each other and it causes patients and providers challenges even if some now can, it wont fix the system, it will make Apple lots of $$ and there will still be challenges like the $ already spent by providers who cant afford to spend more on tech. Also, Apple works on apple products… not all products, its all about the money
How might Apple’s entry into 40 systems & 300 hospitals make this effort successful by the very nature of the massive roll out? It will be successful for their bottom-line, It will make money for Apple on the products all of these systems and hospitals need for the equipment and programs, it will make money on the programs, and it will cost the patients and insurance companies in the long run. Someone has to fund the EHR requirements that were put into mandatory effect.
Why have so many other health record / access initiatives with similar goals failed to catch fire and truly succeed? Failure because they all want to make money (which is their purpose and right) but if providers systems cant communicate, we dont have a system that can work if the patient is out of town and breaks their leg skiing, It only works if all your providers are in the same EHR along with the patient, that will never happen due to the way the USA health system is currently set up/run.
What will be needed for Apple’s push to reach the majority of patients in an effective way? Or is this impossible? There has to be one common system for all for this to work for all, and that will never happen with EHR’s as our society is not set up for it. I have an app on Apple’s platform and Android. We had to make two so that we could reach more people because people have choice preferences and different financial levels as to what they want/expect.
What will you do when presented with an iPad upon admission and instructions for using your iPhone for total access to your health records and care? I have already been presented with an android tablet at labs, radiologist, and er. I dont have an iPhone so I use my android or home computer. Some pt’s are too sick upon check in to do this for them self. At home I print out my records and organize them, I have 8 three-inch binders with my medical records, as soon after a visit that I can I print them and organize them, check for mistakes, etc. and then make copies for my other providers to bring on my next appt so they can scan into my records at their offices.
Does it matter if the solution for health records and data lives on iOS or Android? Shouldn’t we all get behind what works with the right vision versus looking to pick things apart? We have so many cookie flavors because there are so many personal preferences… Same for EHR’s, I love my Android but have 1 apple device, a fax machine, laptop and computer, we need the data to work on all devices as consumers/patients so that we can have the data in multiple formats as preferred and needed for different situations.