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Tough Year

by BarbyIngle
written by BarbyIngle

Ken and Barby Beach

This has been 1 tough year for me. I have gone through shingles 3 times, multiple kidney stones, multiple seizures, and have now had pneumonia for the past month. Health has been a challenge this year but so has finances. I have been battling chronic pain for over 20 years now and work my butt off to not have the challenges of living with severe intractable pain, but pain has a mind of its own. So sometimes it is not help able to be helped and sometimes it is. But breathing I have now found out is so underrated. Here is to a 2020 that is healthy, low pain, full of making a difference in the world.

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BlogFun

Birthday Month

by BarbyIngle
written by BarbyIngle

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!

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BlogHealth

Rekindling Romance

by BarbyIngle
written by BarbyIngle

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.

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Blog

How can you become an advocate or influencer for your condition?

by BarbyIngle
written by BarbyIngle

Most who know me know, I advocate for all of us challenged with a chronic care condition involving chronic pain as well as their family, caregivers, healthcare professionals and public. One in five people worldwide are affected with a condition that causes pain, so it is bound to affect you or someone you know. But until you feel the pain it is difficult to understand all of the challenges it brings on. Whether physical or mental, pain can and will consume you if you allow it to and only the patient can begin the process of healing! My hope is that my speaking engagements and books will inspire your eventual transformation filled with HOPE and motivation.

As an educated and informed chronic patient, I have found the use of technology in healthcare a necessity. I remember back before there were pagers, computers, cell phones, smart devices. Back then I didn’t know that I was going to be a chronic patient. I didn’t know how much being able to access my medical records or speaking with a provider on my care team would mean to me. Now I know that I need providers who are also up on technology and the advances that are occurring on an exponential level up of health care.

As I have shared in past blog articles, my providers all are interactive with each other and my care is better and more accurate for it. I know that I am one of a few patients who receives this level of care from my team. I understand that there are rules and that I am protected with my health records through HIPAA. I also get that being able to text my medial provider opens me up to exposure of my medical conditions to hackers and others. I see the benefit in having the choice to access my records through portals even with the risks. I would also like the portals to be able to speak to each other in computer terms so that I have only one universal health record. I don’t believe that this will ever happen though. Therefore, communication between providers and being able to access all of the records in the system is more important than ever. I used to order copies of all of my records, I am working on my 9th 3-inch binder of records! The difference is now I just print the provider summary instead of the whole record for easy access.

Being your best advocate is a challenge, but once you are organized and up an going with advocacy, you can do so much to help yourself and others get better access to proper and timely care. One way to share your advocacy work is join the International Pain Foundation Partner program. Another way is to join the WEGO Health Patient Leader Network!

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Blog

WEGO Health Award Nominations for 2019

by BarbyIngle
written by BarbyIngle

Hey everyone… I have been nominated for 6 WEGO Health Awards this year! WOW! How cool…

Best In Show: Facebook, Best In Show Twitter, Best Team Performance, Advocating for Another, Lifetime Achievement, and Patient Leader Hero. You can endorse me here until July 28th.

Ken Taylor (my husband) is nominated for Advocating for Another, and Hilarious Health Hero – You can endorse him here and International Pain Foundation is nominated for 2 awards as well. Best in Show; Facebook and Best in Show: Community – You can endorse them here.

Being a 3x winner of the WEGO Health Awards has been an honor.

WEGO Ms. Congeniality 2012
WEGO Lifetime Achievement 2016
WEGO Best Team Performance 2016

Being recognized by my peers in the health community on different levels by other patients and organizations has been extraordinary. It is always nice to be recognized for sharing my story, helping create tools and resources for others in similar situations to my own. During the past 20 years of living with pain I am so happy to be seen as a leader and taken seriously as an advocate, author and motivational speaker. Even being nominated for many awards has been an unbelievable experience and then actually winning ones like WEGO Ms. Congeniality 2012, Lifetime Achievement 2016, and contributing to the International Pain Foundations’ Best Team Performance 2016, was absolutely breathtaking. – Barby Ingle

 

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Blog

Update for CPS/CRPS/RSD patients

by BarbyIngle
written by BarbyIngle

Its time for an update for CPS/CRPS/RSD patients.Back in Jan. 2012 Is when I first heard of Bisphosphonates for RSD. There was a clinical trial that had completed phase 1 and doctors were thinking that this was going to be a great promising new treatment. I looked at this treatment and the study and started realizing that there were many unanswered questions. They company was working on those questions and challenges and the trial moved on to phase 2 and and then phase 3. This past week I got word that the medication by brand was not going to be taken to market. Here is the actual press release explaining why they stopped the study. That the trials outcomes did not show that the medication was effective enough to be approved by the FDA, in layman’s terms. I have known participants and providers in each phase that this went through over the years. I have also known people who went to Italy for their version.

I was happy to know that options are being worked on, I am sad that this will not be one of them. But I am also happy that those patients who raise the funds to either go to Italy or were chosen to be in the USA trials had an option. A lot of patients put a lot of hope into this option and for them please know, there are better options coming down the line. Better information, better studies, better care for those of us living with Reflex Sympathetic Dystrophy, Central Pain Syndrome, and Complex Regional Pain Syndrome.

Here is one such study that was released in June 10 2019. Another medication that seems promising is Cefadroxil especially given the study recently released about the auto-antigens involved in our disease. This medication is not specifically for our condition. It is an antibiotic, but as researchers catch up to looking at a specific medication that will kill the auto-antigens we as patients carry, we can have great hope! Always talk with your providers about the side effects of this medication. I am not an influencer of this medication (it is generic), I just personally feel that it is hopeful for my community, and may try it myself one day, but have not yet.

Looking back as far as 2011, I was writing about the great news that anti-autonomic nervous system antibodies in CRPS patients were found and saying it can take 10 years to get an idea or new treatment to the mainstream. I am so happy to see the progress made by the scientist this year and since 2011’s announcement! There is great reason for HOPE!

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Blog

Patient’s Rights by Barby

by BarbyIngle
written by BarbyIngle

 

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

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Blog

Check out Barby Ingle’s Books on Amazon

by BarbyIngle
written by BarbyIngle

For those who have been wondering where to get my books, you can check them out on Amazon!

 

Barby Ingle Amazon PageCheck 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.

Amazon

  1. RSD In Me
  2. The Pain Code Book
  3. The Pain Code Journal
  4. ReMission Possible
  5. I’mPossible (co-authored)
  6. Aunt Barby’s Invisible, Endless Owie (co-authored)
  7. Real Love and Good Sex for Pain Patients and Their Partners (co-authored)
  8. Wisdom of Ingle (co-authored)
  9. 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

 

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Blog

A New Tool for My Pain Management Toolbox

by BarbyIngle
written by BarbyIngle

 

Barby Ingle Oska PulseAbout a month ago I started using a new tool that I have found so helpful I keep it in my pain management toolbox and I wanted to share it with you. It’s a little durable medical device called the Oska Pulse. Having full body pain and living with multiple chronic conditions, I end up using a variety of tools and am excited to add this one to the list. The Oska Pulse has a one-time cost and can replace a TENS unit. I have been using a TENS unit since 2003 and its about time to replace it and all its replacement parts. Oska Pulse has done that for me. This device is a non-invasive, lightweight and portable system with no adverse side effects. The kind of tool I really like. Bonus, it is approved for air and ground travel.

I tried it in multiple locations on my body and found that I like it on my lower back, stomach, and neck area best. When it is on my legs, I do feel the magnetic pulse and although it was not painful, it was an irritant, so I moved it. I am glad I did. On my back it offers me a warming relief of comfort. I have been using it 5-6 times a day for 30 mins and actually just recently switched to the 90-min version, so now am using it 3-4 times a day. I have tried it with the strap it comes with where no skin contact is needed, and also while laying down I have just put it directly on my skin. I like it both ways.

The device works at the source of pain instead of masking symptoms by increasing blood flow, through Pulsed Electromagnetic Fields (PEMF). This increase in blood flow helps restore injured cells helping take the edge off of back, neck, muscle and joint pains. Along with increasing the circulation, Oska Pulse also helps reduce inflammation and improve mobility; something I need as a chronic pain patient. I have used the device at home and when traveling. I also was sure to check with my doctor before using it to make sure that he is aware and get his recommendations as I do with any new tool I add to my toolbox. The device is also shareable, unlike my TENS unit. My husband and a few friends have tried it out for themselves, too.

The Oska Pulse is registered with the FDA as a Class 1 durable medical device that works at the source of pain. The magnetic field of the system travels through clothing and all tissue types to address the source of pain at a cellular level. According to the makers of the Oska Pulse, this widely used tech is considered an effective and non-invasive way to relieve pain for over 60 years, primarily in a clinical setting with over 10,000 clinical studies supporting its effectiveness. Now they have it in a home device that we can use every day, as needed, and pay a one-time fee to get access to it, instead of having to go to your provider to have access every time.

Barby Ingle Oska Pulse

Close up view of the Oska Pulse w Barby Ingle

There were a few precautions I took into consideration before trying this that I discussed. If you are planning on having a surgery or procedure soon, its not indicated for your use. A few other considerations were to talk with your provider before using, don’t store it in sunlight or hot surfaces and don’t use it if you drop it in water or it is submerged in liquid as that may cause irreparable damage to the electronic components.

If you choose to try Oska you shouldn’t feel a thing. I know I have turned up my TENS unit too high in the past and had to immediately turn it down. I didn’t have that challenge with this device. You can’t overuse it and if you choose to try it, and it helps ease your pain levels, you can keep it on as you see fit for your individual needs, because PEMF therapy works differently for everyone. Some users experience relief within a few days, and others may take a few weeks or more. As I said before, I tried it in multiple spots and it worked best for me on my back and neck. I don’t feel any pulsing or tingling there and only had a warming (comforting) effect where I had it placed which I am told is due to the increase in blood flow to these areas.

 

By Barby Ingle – Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy 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 at her website. The information in this article should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of International Pain Foundation or other companies she refers to in this article.

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Blog

March Madness!

by BarbyIngle
written by BarbyIngle

 

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!

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