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RSD

NERVEmber 2023!

by BarbyIngle November 1, 2023

written by BarbyIngle

As part of the OFFICIAL NERVEmber project, the International Pain Foundation raises awareness about nerve pain conditions. Since NERVEmber was founded, thousands of nerve pain patients and organizations have participated. As part of the project, individuals are encouraged to share a picture daily during NERVEmber to increase awareness. Funds are also presented for research, education, and support services.

Why do we have NERVEmber?

Nerve pain is one of the symptoms of over 150 conditions, which are usually misunderstood, misdiagnosed, or mistreated. It is the color of chronic pain awareness around the world.

NERVEmber is officially recognized by the International Pain Foundation as Neuropathy Awareness Month, Reflex Sympathetic Dystrophy Awareness Month, Complex Regional Pain Syndrome Awareness Month, and Diabetes Awareness Month (November). Barby Ingle coined the term NERVEmber in October 2009. These awareness campaigns were initiated by the International Pain Foundation in 2007 as a 501(c)(3) charity. Since the Neuropathy community and movement for nerve pain awareness grew, the awareness activities grew into Nerve Pain Awareness Month, or NERVEmber as it is known in the pain community.

An Annual Event – NERVEmber!

Each year, the International Pain Foundation hosts the OFFICIAL NERVEmber project events, raising awareness of the 150+ conditions that have nerve pain as a symptom. NERVEmber has been promoted by tens of thousands of nerve pain sufferers and organizations since its inception.

People around the world gather during November to celebrate nerve pain. Events are held. Articles are written. Social Media statuses are updated, graphics are posted, and videos are created and spread online. Proclamations are issued. It is worthwhile to remember that all of these things can take place throughout the year, not just in November.

What You Can Do For NERVEmber

We encourage you to use #NERVEmber on your social media posts and awareness events to raise awareness of RSD, CRPS, Nerve Pain, and Neuropathy. This is an awareness campaign run by the International Pain Foundation. It is illegal to create pages titled NERVEmber/Nervember on social media and sell items with NERVEmber® trademarked items. The International Pain Foundation will address this legal matter in writing with those who attempt to profit from products and pages not approved by the Foundation. The only entity that can sell products and create pages for this project is the International Pain Foundation. Thank you!

As part of International Nerve Pain Awareness Month (which includes conditions such as RSD, CRPS, Diabetes, and Neuropathy), the #NERVEmber hashtag is used daily to promote awareness of neurological diseases. By using the tags #NERVEmber #NERVEPain #CRPS #RSD #CPS #AlgoNeuroDystrophy #GoOrange, you can raise awareness for conditions such as #RSD #CRPS #Diabetes. Find out more at www.internationalpain.org

November 1, 2023 0 comment

Blog Health

Preparing For A Hospital Stay

by BarbyIngle November 5, 2021

written by BarbyIngle

Preparing for a hospital say can be simplified with a few simple steps. Just as you take a “personal history” to your doctor visits, being prepared for emergency visit and hospital stays in a similar fashion is recommended. I have unfortunately been to the hospital too many times now. In the beginning, I did not go prepared. Nevertheless, through multiple visits, I have found a few things that allow me to get better treatment from the staff. A safe, smooth visit is exactly what you need when you are a chronic pain patient who is trying to heal or fight an illness.

Step for a Better Hospital Stay

I now ask for a room in a quiet part of the hospital as sharp and sudden noises exacerbate my pain. Most hospital rooms now have their own thermostat so you can control your own temperature.

If your room does not have its own, you can ask the nursing aide to assist with making you comfortable. If you are still not comfortable, you can also ask for warm blankets.

When I am assigned a roommate I ask for my bed to be farthest from the door so that their visitors don’t accidentally bump into me, and I can have less interruption with my resting. When possible, before their guests arrive, my husband or I inform them of my condition and how noise raises my pain levels. It is best to explain it to your roommate prior to his or her guest’s arrival so that he or she may explain it to them for better cooperation.

I have begun to bring in blankets and pillows from home. They are typically softer, and my quilts more comforting both in warmth and as a piece of home.

With RSD, there is usually an increase in sweating, so just like at home, changing your sheets may need to be done more often. Some hospitals even offer a device to hold the blanket off your body areas w/ RSD. Most of the hospitals I have stayed in now offer an air mattress that can be used to adjust the bed to your preference.

Comfort should be a big consideration so that you can heal faster.

It is almost unavoidable to not get poked with a needle as a patient in the hospital.

They typically check blood at least once a day and use IV fluids to keep you hydrated. Medications are also administered with needles or through your IV. When they are drawing blood or putting in IV needles, ask for pediatric needles because any new trauma can cause RSD to spread to a new site.

If a person takes my blood and I find them to be supportive and cooperative, I have asked that they be the one to check my blood every time. I even had a nurse who agreed to come in to take my blood specifically though she was off duty for one of the days I was in the hospital. It never hurts to ask for things that can make your stay more enjoyable and comfortable.

By Barby Ingle, RSD in Me author

It’s NERVEmber, remember that individualized care is important and a must!

November 5, 2021 0 comment

Blog Health

Why I Journal

by BarbyIngle October 2, 2021

written by BarbyIngle

Why I journal started in 2002. I was in a minor car accident. After months of getting worse, noticing new symptoms and doctors telling me it was all in my head I set out to find answers that make sense for what is happening to me. Many of the tests that were performed did not show any problems. Even so, my symptoms were still bad and getting worse. I went to see over 35 doctors. One doctor performed a vascular study on me and found a lack of blood flow to my right arm, neck and face. He insisted that I needed surgery right away. I was willing to do anything to get out of pain. I went into the hospital to have my first rib taken out to make room for my nerves and blood flow. I thought that this would fix all my pain, but I was wrong. The surgeon did a poor job with the surgery and I ended up with spurs growing on my stump of a rib and more severe pain than I had at the start. After five lung collapses, I went to a new surgeon. He did a body scan in 3-D and saw the problem right away. One spur went directly into my nerve bundle in my shoulder and the other went directly into my right lung. I had surgery a few days later on the rib to remove these spurs.

More to the story

Since about a month after the accident, I attended physical therapy, which was excruciating and seemed to make things worse. Finally, in May of 2005, I found my way to a pain clinic here in Arizona. My doctor took the time to listen to my history and examine me. The thought of being examined again, and by a new doctor, was frightening. After the hour with me, he said he thought I had Reflex Sympathetic Dystrophy (RSD), a painful Neurological condition, and wanted to run yet another test. After testing, my diagnosis was RSD as all my signs and symptoms had pointed to for all this time. The thing is, I had a doctor four months earlier tell me that he was 100% sure that I did not have RSD. This same doctor did an electromyography (EMG) on me 6 times, which was awful enough, so the thought of a test that involved a needle was beyond scary. I had found a site on the web and put in my symptoms, even the ones that did not seem to fit with the others. After the site led me to www.rsdhope.org, I was sure that I did have the symptoms of Reflex Sympathetic Dystrophy. Why did my original doctors not believe me? They saw the symptoms, saw me walk into walls and pass out from the severe pain, and more. When my new doctor, suggested that I may have RSD my first response was, “Dr. X was sure that I did not.” But what test had Dr. X done to be so sure – NOT A ONE!

After finding so little information out there and having so many doctors try to treat me who did not know about RSD, I realized that I am the one who has to teach my caretakers. While teaching them, I have learned so much myself. I was inspired to make this book, journal and video series because they are tools I wish I had in my beginning stages of RSD. I know how important it is to have the big picture.

Chronic Illness Changes You

Chronic or life-threatening illnesses can have a devastating impact on your entire life. I have come to realize that I am the only one responsible for my health. Many doctors who are not connected with a research hospital or university do not have the time to keep up to the minute with the latest information. RSD is just one type of chronic pain. Reflex Sympathetic Dystrophy does not always respond to treatments that other chronic pain conditions would be regularly helped. As RSD is a fluid dystrophy syndrome, even among RSD patients there are differences in response to treatments.

Sharing this information with you in an easy to understand language has come to be my purpose. If I had a resource like this when I started, I would have spent a lot less time, money and frustration. As I have come to know, RSD does not yet have a cure and only a small number of us RSD’ers will ever go into remission. Do not lose hope. There is research going on and the government is taking notice of this debilitating syndrome. This book is intended for RSD patients and caretakers who have a need for more advanced, in-depth, medical information and tips for daily living; this information is not always readily available to you or put in terms that are easy to understand. Another goal of this project is to educate patients and their families about their treatment options so that they can better understand, communicate, and make informed decisions about medical treatments and the specific needs of the person with RSD in their life. This journal can serve as a starting point for communication between you, your family and team of doctors.

Lifelong changes

RSD and other pain conditions can be lifelong. This causes a significant impact not only on the patient, but on family and friends as well. The condition affects many aspects of the patient’s life in varying degrees. For me, the simple things are the toughest. Activities of daily living, personal grooming, and my social and personal life have all been affected. I lost my professional life to the bad days of RSD as well as to not being prepared for a catastrophic injury. I have had to adjust my daily routine because of the inability and difficulty of performing work-related tasks. When I created a journal I found that prayer, having a low stress lifestyle, and hope keeps me in a positive place mentally and my records organized, allowing for better healthcare. I have learned not to sweat the small stuff, to let go of troubles from the past and look for ways to better my future. With a good team around you, the same is possible for you.

Like most chronic pain conditions, RSD is an invisible disability. It is harder to get ahead or be understood when you have an invisible disability. Often times, people have misconceptions about people with disabilities. I choose to disclose my condition to anyone who will listen to let them know that RSD exists because of the importance of early detection and proper treatment to chances of remission. The more people I educate, the bigger the chances that someone else who has RSD will have it easier. I know what I live, and I want to help others.

Many Blessings, Barby Ingle

October 2, 2021 0 comment

Blog

3D Pain Community Puzzle

by BarbyIngle August 1, 2020

written by BarbyIngle

Recently I was quoted in an article… the quote was not entirely what I said and I wanted to take this opportunity to clarify here.

My actual quote was – “I believe that when people say ‘let’s unite’ what they mean is ‘everyone follow me or I have a project that I want you to participate in, if you don’t then we are not united’. There are too many aspects of the chronic pain that need to be done to make it better for all of us. It will take us all, doing what we can. We, as humans tend to want changes done ‘our way’ or not at all. Very few (especially leaders) will not just lay down and go with the flow. Especially if they have an idea of their own. On top of that, healthcare/paincare is so particular to the person. Because there are hundreds of treatment options and thousands of pain diseases, there is no one way to ‘UNITE’ and as soon as you say, we’re united know, you are not. Not everyone wants the same things you do, but we are all part of the same community, it is one we are not in by choice, but by circumstances. There are 1.5 billion in the pain community worldwide. We don’t all speak the same language, there are different laws and customs that need to be addressed. If you want to be the biggest help for yourself and other patients do what you can do to help those you can help and know that there will be some who don’t want help or believe another way is best. It doesn’t make them not part of the pain community. We all make a piece of a puzzle, we are all a part of the same puzzle, to solve it we need each piece, but not all pieces connect together. Find or create your niche and work to make a difference, fulfill your goals, and be the best you can be. Be good to yourself, be good to others (even if you disagree).” – Barby Ingle

For far too long people have been ascribing what they interpret I say, or someone says Barby Said… and they take it as fact when I did not say it. In the case of the article I am referring to here was not a bad article, it just was not totally accurate. I never said the chronic pain community which I am part of) was a gig saw puzzle. I actually didn’t say jigsaw puzzle. I also didn’t say that some pieces don’t fit. You can read above my feelings on when people say ‘unite’. This is a psychological tool many writers do to make a certain narrative fit their article. There are so many aspects of living with a chronic pain condition (or more than 1), we all want different things on the micro level and that is personal to each of us. On the macro level, I want access to proper and timely care for all humans, no matter the cost, care choices etc. I know not everyone wants the same, that is quite ok. But please dont say, she said/he said out of context. If I had to name a tyupe of puzzle for better understanding of what I meant, I would say a 3.D puzzle because it is more intricate, and dynamic.

That’s all for now… back to isolation from COVID19. Still healing from Valley Fever.

August 1, 2020 0 comment

Blog

Update for CPS/CRPS/RSD patients

by BarbyIngle July 2, 2019

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!

July 2, 2019 0 comment

Blog

Patient’s Rights by Barby

by BarbyIngle June 4, 2019

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

June 4, 2019 0 comment

Blog Health

CELEBRITIES WHO LIVE IN CHRONIC PAIN

by BarbyIngle January 2, 2017

written by BarbyIngle

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 20^th 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.

January 2, 2017 0 comment

Health

Why is it important to keep your own copies of your medical records, Part 1

by BarbyIngle April 15, 2015

written by BarbyIngle

Requesting Healthcare Records
By Barby Ingle
(excerpt from The Pain Code Book)

One thing I have learned over the years is how important it is to keep a copy of all of your medical records. My insurance companies have tried to force me into “step therapy” and without my medical records it would have been very difficult and long process to get through. I save my providers time as well, when I can fill out the insurance forms for appeals and send them over for the doctor to just review and forward on. In 2012, I was again faced with a step therapy request from my insurance company that came in the form of a written letter. They said, “If you have already tried the other medications with fail, your doctor should have done the Medform 3500, which is completed and sent into a clearing house.”

There is voluntary reporting form 3500, and the 3500A that is for issues that are mandatory to report. I went online and found the form and directions on the FDA government website. [1] Once I filled in all of the information, I copied it, attached the pertinent records, and sent it to my doctor. He finished completing it (using the records I attached) and signed and faxed it in. A few days later I called the insurance company to let them know I had a Medform 3500 on file. Within a few hours of calling my insurance company to let them know my medication was ready to be picked up from the pharmacy and they dropped the step therapy requirement for me.

You can typically obtain your medical records by writing out a request or filling out a premade form from the provider.

Your record request should include the following: [2]

Date of the request
Full Name
Date of birth
Social security number
Telephone number
Name, address, fax, and telephone number where the records are to be sent
Purpose of the request (typically, there can be a charge for ordering your records). Each state has different laws on how much can be charged, for instance, there is a law in Arizona that if the records are being used for continuing care, the provider cannot charge you
Specific items or dates of service needed
Any restrictions on the request
Date this authorization expires (authorizations must be less than one year old)
A statement in writing indicating that the patient knows that they have a right to revoke this authorization at any time
A statement indicating that the patient knows that signing this authorization is not a condition of obtaining treatment
A statement indicating that the patient understands the potential for the protected health information to be re-disclosed by the recipient and no longer protected
The signature of the patient or, if the patient is a child, the parent or guardian. If signed by a personal representative, a description of his/her authority to act for the individual and a copy of the document giving that authority. Records are not usually released while a patient is still hospitalized because they are incomplete

If you are in a state that is able to charge for copies of your medical records, you may save some money asking for specific documents or all recent major reports rather than requesting the entire record. Most of my requests have been filled with in 5 to 10 days but it may take up to one month. If you have not heard back in 30 business days, you may want to call or send a written follow up request. A few providers are offering your records online and others may provide it to you in electronic form if you provide them a flash drive.

Check with each provider as to the method they prefer. Some providers will fax medical records and some will only fax them to another healthcare provider in cases of immediate emergency. Your records are the physical property of the provider, however, the patient controls the release of the information contained in their record. In addition, if you are moving away from your provider, you may request your entire file so that you may provide it to the next provider who will be taking over your care. Providers must keep a copy of your records for a particular amount of years. In some states it is seven, others it is ten years, although most providers keep them longer.

[1] www.fda.gov/Safety/MedWatch/HowToReport
[2] Sample in The Pain Code Journal

April 15, 2015 0 comment

Blog Health

Game Plan; Empowerment Plus

by BarbyIngle February 16, 2015

written by BarbyIngle

“You have a better game plan than the {others} – and that is the name of the game – to constantly dream of better ways and a better future for those we care about and for our society. We all need to work towards better models of care and better care. I call your game plan “Empowerment Plus”, for it focuses in on empowering the person in pain. The {others} is old wine in new bottles- it is medical corporatism – with a kinder and gentler “bio-psycho-social” face. It isn’t energetic enough or focused enough on people to meet the needs of the pain community. As pain remains very much a mystery, and the prevalence of pain conditions like neuropathic pain and osteoarthritis are on the rise, we all need to strive to overcome the limitations of past ways of thinking about and addressing the needs of people in pain. I know you are a game changer in the pain community and that is what is needed to advance pain care beyond its current great limitations. Until next time, David B.” 2/16/2015

February 16, 2015 0 comment

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Life with an Invisible Illness/Disability

by BarbyIngle February 8, 2015

written by BarbyIngle

What do you say to others when you live with an invisible illness/disability – Chronic Pain

You can never take back information once it is shared but you can always wait to let people know later. If you choose to disclose that you have chronic pain, decide when and how to do so. If there is time to prepare ahead of time, it is a good idea. Take time to think about different situations and how you wish to handle them. Many people feel it is not their place to ask about your physical conditions, but knowing about chronic pain and your disease specifically would help them understand where you are coming from with your thoughts and actions. When you are deciding to disclose your chronic pain and limitations, make the decision whether or not to let others know about your invisible disability.

I know a chronic pain patient who liked a neighbor and was interested in dating him. He often helped around her house with handyman projects, and she would see him out on his porch and go out and talk to him. Eventually, he asked her out, and they had a great time. Over the next few months they had dates scheduled but she ended up canceling a lot of them. She was just in too much pain. He began to think she was not interested in him and started to pull away. Friends encouraged her to tell him about chronic pain and what she is going through. She did, and he stuck around for a while. In the end it did not work out, but they remained friends and it helped her see that you can still have a social life despite the chronic pain. If you’re in this or another social situation you should think about the following when deciding to disclose your chronic pain and how it affects your everyday life. Are you able to participate in the activities at hand using your coping skills and tools? Do you need accommodations? Are you able to perform the activity safely if you choose not to disclose? Secondly, do you think they will react in a way appropriate for the environment you are in? If you are not sure, you may want to wait until you are in a private setting. If the situation becomes an intimate relationship, it is important to share even if it means losing the person. It is not fair to them or yourself to keep information back. If your disability is in remission or typically under control, is there a reason to disclose? Possibly the education you give them may help someone else they meet along the way. It is possible that flare-ups on your part may keep you from future activities. Finally, how will you address misconceptions about your disability when you disclose? Some people do not believe in treating pain with narcotic medications or have a bad experience with someone else in their life with chronic pain. Having them not understanding can lead to a divide. Also, not telling others is not an option if you are in a situation that can cause others harm. For instance, when getting on a plane, you cannot have the exit row. If assigned by mistake, notify the flight crew.

When choosing situations and activities where you do not want to disclose your disability, take time to carefully analyze the kind activities you are able to do and plan accordingly. Remember, you can always reveal more information later as needed. The following are some of the risks and benefits of letting others know about your invisible disability.

Risks

Many chronic pain patients are seen as a drug or attention seeker, or as mentally unstable.
You may face discrimination, subtle or direct, from work, friends and caretakers.
You may face envy or resentment for receiving special treatment from the others in your life, especially with children.
You may not be asked to participate in the event or future activities, if the other person does not understand.
You will have to give up your privacy to receive help bathing, eating and corresponding with others.

Benefits

Letting others know about chronic pain and what you are living with daily can give you a sense of purpose and support for yourself and others in your life.
Openness with your doctors, family and public can create understanding for oth ers with invisible disabilities.
You may be an ambassador for others with disabilities as a public educator, mentor or on a personal level.
Your abilities, attitudes and success may counteract any discrimination. I think, if I keep doing what I can, they will eventually see. Even if they don’t get it, you can still be successful.

February 8, 2015 0 comment

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