I’m thankful that my mom was able to make it here from Georgia over the summer. I’m thankful for our time together. I miss her. I’m thankful for my husband, our 2 daughters, our son and our grandson. I’m thankful for the food we prepared and all ate together.
I’m thankful for family and friendships and the friendships that are family. I’m thankful for people who try when trying is hard enough to achieve. I’m thankful for the acquaintances. I’m thankful for all our differences because if we were all the same there would be nothing to learn from. I’m thankful for both joy and pain.
I’m thankful for the Council and the Enlightened because we understand the meaning of humanity beyond the scope of the physical world. I’m thankful for the experiences in all that they’ve been, and I’m thankful for the memories that accumulate in time.
Excerpts from, Overcoming Challenging Obstacles by Twinkle VanFleet below.
The past few years have been a test of strength, endurance, and possibilities amidst constant setbacks to overcome. 5 years after the injury that led to my CRPS, I did go back to school for a degree in Corporate Publishing. At the end of 2006 I took leave to have my permanent Spinal Cord Stimulator implanted and I returned approximately 10 weeks later. Due to not being able to drive any longer, my husband took me and picked me up in between his own full-time work schedule. By 2007, I wasn’t able to keep up any longer. My grandson was born in 2006, too. My husbands first heart attack when he was 37, 2 stent placements, his Diabetes diagnosis, he only used accumulated vacation time for it and returned to work in a weeks time. In 2007, we bought or first home, but he also lost his 13 year career and stability when his company C.S.A.A. (AAA) relocated out of California. I continued to raise awareness for chronic pain, met Trudy Thomas, became a leader at MD Junction’s RSD Support and remained for 3 years. My own support group which I began on My Space in 2003 was moved to Facebook, yet I didn’t move the members with it. I like for people to find us rather than to send out invites or notify. I met Barby through Trudy. My son had a traumatic brain injury in August of 2011 and my husband had a second heart attack within a year. I stayed in the PICU with Ozra for 10 days. In December of 2012 I stayed at the hospital with my husband for the entire 9 days during his quadruple bypass surgery, the first few days I slept in the van. In 2012, I had Gall bladder surgery and in 2013 I had another Gall bladder surgery which included the removal of part of my liver and multiple hemangioma’s. https://rsdadvisory.com/2013/07/17/gall-bladder-fiasco-continued-and-hopefully-the-final-chapter/
2014 my daughters liver disease, our sons birth defect diagnosis from Shriners Children’s Hospital unrelated to his TBI and my surgery to have my SCS battery replaced. Piece of cake, mostly. 2015 started with a bang and 3 weeks of hard Cymbalta, Zonegran, and Clonazapam withdrawal due to WC delaying Rx refills. The other 2 weren’t filled either, but really no effects from them as much as the other 3. I no longer take Clonazapam or get the Lidoderm. It hasn’t been easy, especially when Clonazapam did help and pain management medication was and is already at the lowest minimum. I already do all that I can to minimize my own agony and I practice these coping strategies each and every day. My husband just had surgery to repair a torn shoulder a few months ago and we just learned by MRI he has another tear in his knee. We’re still learning all we can at Stanford for our daughter. Rikki is managing well. My purpose is in helping others, it’s all I’ve ever done one way or another, but it isn’t my passion. I’ve come to realize it can’t be. It’s not the fire flickering about the dancing flames that motivates my spirit to fly. My bucket-list goal survives all this. It’s not writing, I have that. It’s not policy, POP gave me that opportunity again. It’s much deeper than that, at least for me. Our son and oldest daughter are moving in together on the 1st. My man and I will have our home to ourselves. January 26th begins my 16th year. I’m not sure where 2016 will take us, I just know I take a lickin’ and keep on tickin’ … for mine.
Functional restoration afforded me lessons and insight to be able to push on. Sometimes we already realize these lessons for someone else, but when it’s us, we don’t recognize it the same, we change, unless we change us back.
It’s a daily process to overcome additional challenges brought on by chronic or intractable pain. It’s moment by moment at times. Having to stop something suddenly to practice breathing exercises to decrease a stress situation brought on by either emotion or a spike in pain, bring a rise in blood pressure down, use focal points, imagery or going to my “happy place” in my mind to ease myself.
John C. Thomas, PhD, Rick Wurster MSG, MPT, ABP, BCIAC, Leticia Camarena M. A., Tatyana Yatsenko, Larry Lane, Patient, Patient, Twinkle VanFleet, Patient. Compass Center for Functional Restoration Graduation July 17, 2009
I began recording both my P & E. I tracked my “pain” level and my “emotional” level using the same Numeric Rating Scale. The 11 point 0 – 10 scale where 0 represents “no pain” and 10 represents “worse pain imaginable”, “as bad as I can imagine” or unimaginable. I don’t do this anymore because I’ve learned to have the awareness without tracking, but for example at the moment I logged, my E/emotions/stress was an 8 and my P/pain/physical was a 5, I would eventually learn that my pain level would most likely rise anytime. I had to use my cognitive tools right away to reduce my stressors in order to manage the physical pain. I discussed this concept at MDJunction.com when I was a group leader in the RSD Support Forum in 2009.
Life itself can be hard, add pain to it, and it’s even harder. It can be managed with the right tools. It’s never going to be perfect, but we can make it as comfortable or as tolerable as possible for ourselves. Removing or decreasing triggers that instigate pain have eased me. I can’t watch the internet all day. It’s not because I don’t love or care for everyone. It’s because there are pain triggers everywhere. When we see images, graphics, memes of illness or disease scrolling by, especially our own, a trigger can occur. I’ve learned over the years to recognize this. I have the awareness to understand that I can be a contributing factor in my own discomfort.
I never went to preschool and Kindergarten was only for a week or two. I started school in the first grade. I was taught at home and I was reading at advanced levels by the age of 5. My comprehension and spelling ability was always above average. While I either suppressed it or just didn’t care to acknowledge it, I did go to special classes in the first and second grade because I couldn’t pronounce the letter’s S and T in words and sentences properly. I was a critical thinker immediately in life. http://www.criticalthinking.org/pages/defining-critical-thinking/766
By the time I got to my 4th elementary school in the middle of the school year in the second grade, I didn’t have to tell anyone I went to the classes with the special ones. Those new kids and that neighborhood became the ones I grew up with until I left Sacramento in October of the 9th grade to move to L.A. County for my dad’s job. The rest of that year carried with it a bit of insecurity. I started Drama at my new high school and as a Junior I was in second year advanced drama, speech, debate and thespian clubs, involved in school plays, in chamber singers for a while, I swirled the baton too, but chose my priorities and kept to the one’s I still use today. By the middle of the 11th grade I was off to the high desert where my parents bought a home. I’ve been in 4 high schools, 2 Junior high’s due to the district split and several elementary. I learned to adapt young. I may not like it, but I do it fairly well. I’m a survivor of repeated childhood molestation and indirect physical and emotional abuse.
I’ve been an Empath http://themindunleashed.org/2013/10/30-traits-of-empath.html for as long as I can remember. I can vividly still remember leaving my teething ring on the back metal bumper edge of my dad’s best friend’s pickup truck and them driving away with it. I’m hypersensitive to people, places and things sometimes to my own detriment, yet I’m also a no-nonsense girl. I’m inclined to the natural order of things, including man and woman, but I’m not a doormat. I love my crazy and he does, too! Why? Because it’s really not all that crazy, I just like to have it appear so in the midst all the uncertainty in life. Laughing is the best medicine of all. If I can make you laugh, give you something to laugh at even if it’s at my own expense, I’m thrilled to have been of service.”
Sure there are times I think “Dang, no one gets it!” I don’t mean in everyday situations, I mean in my critical thinking. Those who are on the same page fear agreeing openly until my thought, reasoning, even an educated statement that I make is validated by someone with high education, authority or status. By that time I really don’t need the care, concern or acknowledgment. I might have needed it when I was no one to be acknowledged for. No one will ever know in these situations because I’ll not ever treat them any different and there isn’t any animosity, but there is recall. Why? Because everything we do or don’t do to another person makes an impact on them. Those impacts influence the rest of their lives by accumulation in decisions and choices. This includes my interaction with other people.
By the time I was in the 4th grade I was in the MGM program. At that time called Mentally Gifted Minds. My 9-year-old grandson is currently in the Gifted and Talented Education Program (G.A.T.E.).
During the 4th to 6th grade 2 of my class periods were reserved for tutoring the NES (Non English Speaking) students who just joined our Country from Vietnam, and other Southeast Asian communities. I was 8 years old when I began the 4th grade. These years were 1975-1977/78. Due to being bright enough to be a student teacher at such a young age, I missed normal class subject time; I began to fall behind in math studies. My mathematical education is only that of general knowledge. I held enough that I was promoted to General Manager for a Restaurant by the time I was 24.
(Several paragraphs have been removed from the original for this share)
It really is a multi-disciplinary approach to pain care and taking an active role in our own overall well-being that makes the difference between making it or breaking it. Even if we have to fake it to make it to get there.
This piece is most likely controversial. There is much imagery in it. It’s written from the point of multiple views.
It is dedicated to all those who struggle with addiction and all those who’ve come up on the other side despite the ‘tragedies’ of life. It does not reflect personal addiction, but rather understanding from multiple sources. Slightly edited from the original.
Collaborative consideration open for discussion.
Any judgement for this piece will only make me prouder of it. #StrongerThanPain #Ohana
The West Coast Pain Summit was held on November 14, 2015 at the Elk Grove Public Library Conference Room. In attendance was Lynn Green – Pain Therapist, Medtronic INC (Medtronic.com), Jacie Tourart – PA-C, Spine & Nerve Diagnostic Center (spinenerve.com), MarLeice Hyde – Erasing Pain (erasingpain.com) and Michael Connors, LVN. Harmony Home Care (harmonycareathome.com). We had local and out-of-town attendee’s join us. Our Power of Pain Foundation Delegates Erik and Kharisma VanFleet assisted as needed and 9-year-old ‘Tai Howard offered a friendly smile and a well-behaved demeanor.
Mr. Clete Dodson won our Power of Pain Long Sleeve Shirt chosen from the in person drawing. Monique Maxwell was chosen for our #NERVEmber silent drawing.
My presentation included, but was not limited to:
Welcome to the First Annual West Coast Pain Forum hosted by the Power of Pain Foundation.
This year hosted and sponsored by both the Power of Pain Foundation and Medtronic Neuromodulation.
Our topics today include Access to Care, Advocacy and Neuromodulation with Medtronic Pain Therapies from Medtronic.com and TameThePain.com
Access to Care
There are 8 key areas to the Patients’ Bill of Rights
You have the right to accurate and easily understood information about your health plan, healthcare professionals, and health care facilities.
You have the right to your choice of providers and plans.
You have the right to emergency services. (Emergency department, urgent care)
You have the right to take part in treatment decisions.
You have the right to respect and non-discrimination
You have the right to confidentiality. (Privacy of healthcare information)
You have the right to file complaints and appeals.
You have the right to your consumer responsibilities. (Take an active role in your own health and well-being. Doctors are only a tool, too. )
Understand your symptoms
Communicate with caregivers and healthcare professionals
Communication is essential.
Become an expert in your pain
Be prepared when attending your doctor’s visit.
Keep a pain journal.
Write down your questions.
Do you have concerns about your medication, or treatments?
Have a shared understanding of your pain and symptoms.
Get emotions under control.
Be assertive, but listen to others.
Describe your pain. (Don’t just say its pain. Does it burn, stab, pinch, tingle. Does it feel like cutting, aches, or throbbing? Is it localized or all over? Is it instigated by stress, depression, emotions?) Your doctor can’t help you if you’re not able to communicate.
Take someone with you to your appointments.
Take responsibility in reaching goals.
Caregivers: Be mindful and assertive in caregiving. According to the Department of Pain Medicine and Palliative Care at Beth Israel Hospital in New York, a family caregiver is “anyone who provides any type of physical and or emotional care for an ill or disabled loved one at home”. For this definition, “family” refers to a nonprofessional who is called “family” by the person who is sick. Sometimes, family is whoever shows up to help. (IN the FACE of PAIN, 5th edition, page 40)
Be easy on your caregiver without them you might not have any one to care for you. If you’re both a patient and a caregiver, be easy on each other. No one knows better than both of you.
Keep one network of physicians. One primary care provider, let referrals be given by only him or her.
Use only one pharmacy. Have medications sent to the same location. Pick them up from that location.
Don’t allow more than one physician to prescribe you an opioid pain medication.
The PDMP/ Prescription Drug Monitoring Program contains records of your prescribing history and is maintained and reviewed for changes in your habits.
When visiting ED’s describe your pain on the 0 – 10 NRS or Numeric Rating Scale which is most commonly recognized in emergency care. The NRS Scale for pain measures the intensity of your pain. It’s the 11 point numeric scale with 0 representing “no pain” and 10 representing “the worse pain imaginable”, “as bad as you can imagine” or unimaginable and unspeakable pain”.
Don’t tell the doctor your pain is an 11 or 20. You may be found unbelievable and your access to timely and proper care may be delayed, or in some instances even denied. You want them ready and willing to assist and care for you without second guessing.
Medications don’t work if we don’t take them. They’re prescribed to be taken as directed. Not doing so can lead to flare ups, increased pain, adverse reactions, withdrawal and misuse.
Examples of non-adherence
Not filling prescriptions
Not picking up filled prescriptions from the pharmacy
Stopping medication before instructions say you should
Taking more than instructed or at the wrong time of day
*(IN the FACE of PAIN, 5th edition, page 16)
Many patients, including myself, have a severe Vitamin D deficiency in addition to the dystrophy caused by their diseases, or syndromes. Dystrophy is defined as – a disorder in which an organ or tissue of the body wastes away. This includes the bone and tissue in the mouth, jaw, teeth, and gums. Access to care can be a setback when our teeth decay, break away, or we’ve lost them as a result. Lacking dental insurance is an issue of its own. Judgement regarding addiction, misuse and drug seeking can hinder care until each time we prove otherwise. Additionally, BiPAP and CPAP use can contribute to dry mouth and decay. Moisture removed from the mouth is another price we pay just to breathe.
The California Legislature approved a bill (Assembly Bill 374) the second week of September. Step Therapy required that a patient try and fail (fail first) a medication before being allowed to take the one their physician would have otherwise prescribed for them. AB 374 now allows providers in California to fill out a form to bypass step therapy requirements.
The PA Shuffle: Prior Authorization; information on our efforts can be found at our table, next to our ADF Policy efforts.
An energy assistance program is available through SMUD for qualifying patients who use specific medical devices. You can request the Medical Assistance Program Application by calling the Residential Inquiries number located on your bill.
Each of the above can assist in access and care. ( 7 min ) ^
Pain Clinic (15 mins)
Break, meet and greet, #painPOP info
We’d love to have you take part in our #painPOP in the parking lot after the conference for photos and a bit of fun in raising awareness for National Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome Month. Our #painPOP campaign is participate or donate. Accept a challenge or donate to our cause.. I challenge all of you to raise awareness for the painful, debilitating and often progressive Neuro autoimmune illness that desperately needs a cure, an understanding for better quality of care, early diagnosis for stabilization or remission, and continued education and support materials, programs, free public educational events and conferences that we provide free to patients, caregivers, the healthcare community and the general public. We can’t do it without the help of awareness and funding. If you didn’t receive your raffle ticket joining us today, ask for one. Check NERVEmber.org tomorrow to see if you’ve got the winning numbers. You’ll be contacted to be sent your prize. Medtronic is up next with a demo, overview and a Q & A session. Enjoy each other!
The Power of Pain Foundation Co-Sponsored SB 623 ( Abuse-deterrent Opioid Analgesics ) with Assemblyman Jim Wood and attended the live press conference held at the California State Capital on March 24, 2015. We will continue to support this bill in 2016. The bill will provide a safer alternative option to opioid medications by deterring several non-swallowing ways opioids can be abused.
You can join our international Delegates team by visiting: powerofpain.org/delegates-of-popf
We’re always looking for committed local volunteer advocates to support our legislative and policy efforts. The Power of Pain Foundation is a member of:
The Consumer Pain Advocacy Task Force (CPATF) which is comprised of national leaders and decision-makers from 16 consumer-nonprofit organizations that are dedicated to patient well-being and supporting the use of effective methods for pain treatment. The State Pain Policy Advocacy Network (SPPAN) first convened these leaders in March 2014 to organize a collective action effort to benefit people with pain. consumerpainadvocacy.org
SPPAN is an association of leaders, representing a variety of health care and consumer organizations and individuals, who work together in a cooperative and coordinated fashion to effect positive pain policy on the state level—policy that guarantees access to comprehensive and effective pain care for all people living with pain. Power of Pain Foundation is one of the original SPPAN partners. sppan.aapainmanage.org/
As POP Advocacy Director (POP 2011-12) and a SPPAN leader since 2013, locals would be working with me, as needed, to attend and represent us at the Capital.
We thank you all for attending today. We look forward to seeing you again next year. Please visit powerofpain.org for our education, awareness, advocacy and access to care missions.
After the conference we popped the pain out of ’em! #painPOP
#painPOP with attendees from WCPS
Published on Nov 14, 2015
#painPOP with some of the attendees from the POP’s West Coast Pain Summit 2015 for neuropathy awareness in #NERVEmber #ihavethenervetobeheard #doyouhavethenervetobeheard #powerofpain http://PowerofPain.org/conditions #ShareAndMakeAware #ParticipateAndOrDonate
Additional photos can be found on the Power of Pain Foundation’s Facebook Page at facebook.com/powerofpain in the 2015 POP Events Album.
Lynn Green – Pain Therapist, Medtronic INC (Medtronic.com), Twinkle VanFleet – Advocacy Director (powerofpain.org) and Jacie Tourart – PA-C, Spine & Nerve Diagnostic Center (spinenerve.com).
The 8 key areas of the Patient’s Bill of Rights
Information for patients
You have the right to accurate and easily understood information about your health plan, health care professionals, and health care facilities. If you speak another language, have a physical or mental disability, or just don’t understand something, help should be given so you can make informed health care decisions.
Choice of providers and plans
You have the right to choose health care providers who can give you high-quality health care when you need it.
Access to emergency services
If you have severe pain, an injury, or sudden illness that makes you believe that your health is in danger, you have the right to be screened and stabilized using emergency services. You should be able to use these services whenever and wherever you need them, without needing to wait for authorization and without any financial penalty.
Taking part in treatment decisions
You have the right to know your treatment options and take part in decisions about your care. Parents, guardians, family members, or others that you choose can speak for you if you cannot make your own decisions.
Respect and non-discrimination
You have a right to considerate, respectful care from your doctor’s, health plan representatives, and other health care providers that does not discriminate against you.
Confidentiality (privacy) of health information
You have the right to talk privately with health care providers and to have your health care information protected. You also have the right to read and copy your own medical record. You have the right to ask that your doctor change your record if it is not correct, relevant, or complete.
Complaints and appeals
You have the right to a fair, fast, and objective review of any complaint you have against your health plan, doctors, hospitals or other health care personnel. This includes complaints about waiting times, operating hours, the actions of health care personnel, and the adequacy of health care facilities.
In a health care system that protects consumer or patients’ rights, patients should expect to take on some responsibilities to get well and/or stay well (for instance, exercising and not using tobacco). Patients are expected to do things like treat health care workers and other patients with respect, try to pay their medical bills, and follow the rules and benefits of their health plan coverage. Having patients involved in their care increases the chance of the best possible outcomes and helps support a high quality, cost-conscious health care system.
According to the presentation at the POPF Midwest PAIN Expo attendee’s learn the importance of the of the “Patient Bill of Rights” (“Patient Rights” 3). (et al.)
We look forward to seeing you next year!
Twinkle VanFleet, Sacramento resident and pain patient. Executive Board Member and Advocacy Director, Power of Pain Foundation.
“Copyright protection exists from the moment a work is created in a fixed, tangible form of expression. The copyright immediately becomes the property of the author who created the work. Only the author, or those deriving their rights through the author, can rightfully claim copyright. In the case of works made for hire, the employer—not the writer—is considered the author.” The Campus Guide to Copyright Compliance, COPYRIGHT BASICS: WHAT IS COPYRIGHT LAW? Para 1.
So that the information I’ve previously provided in the post at the end of this page isn’t taken as inaccurate or babble, I’ve taken the time to compile the following for you so that there aren’t any misunderstandings. Links have also been provided so that you may learn for yourselves.
The First Sale Doctrine
“The physical ownership of an item such as a book, painting, manuscript or CD is not the same as owning the copyright to the work embodied in that item.
Under the First Sale Doctrine (Section 109 of the Copyright Act), ownership of a physical copy of a copyright-protected work permits lending, reselling, disposing, etc., of the item. However, it does not permit reproducing the material, publicly displaying or performing it, or engaging in any of the acts reserved for the copyright holder. Why? Because the transfer of the physical copy does not transfer the copyright holder’s rights to the work. Even including an attribution on a copied work (for example, putting the author’s name on it) does not eliminate the need to obtain the copyright holder’s consent. To use copyrighted materials lawfully, you must secure permission from the applicable copyright holders or a copyright licensing agent.
Duration of Copyright
The term of copyright protection depends upon the date of creation. A work created on or after January 1, 1978, is ordinarily protected by copyright from the moment of its creation until 70 years after the author’s death.
For works made for hire, anonymous works and pseudonymous works (unless the author’s identity is revealed in Copyright Office records), the duration of copyright is 95 years from publication or 120 years from creation, whichever is shorter.
For works created, published or registered before January 1, 1978, or for more detailed information, you may wish to refer to the public domain section of this guide or request Circular 15 ( “Renewal of Copyright”), Circular 15a (“Duration of Copyright”) and Circular 15t (“Extension of Copyright Terms”) from the U.S. Copyright Office Web site, www.copyright.gov.
Registration and Notification of Copyright
The way in which copyright protection is secured is frequently misunderstood. Copyright is secured automatically when the work is created and fixed in a tangible form, such as the first time it is written or recorded. No other action is required to secure copyright protection – neither publication, registration nor other action in the Copyright Office (although registration is recommended).
The use of a copyright notice is no longer required under U.S. law, although it is recommended. This requirement was eliminated when the United States adhered to the Berne Convention effective March 1, 1989. If a copyright holder wants to use a copyright notice, he or she may do so freely without permission from or registration with the U.S. Copyright Office. In fact, the use of a copyright notice is recommended because it reminds the public that the work is protected by copyright.
The public domain comprises all works that are either no longer protected by copyright or never were. It should not be confused with the mere fact that a work is publicly available (such as information in books or periodicals, or content on the Internet).
Essentially, all works first published in the United States before 1923 are considered to be in the public domain in the United States. The public domain also extends to works published between 1923 and 1963 on which copyright registrations were not renewed.
All materials created since 1989, except those created by the U.S. federal government, are presumptively protected by copyright. As a result, the chances are high that the materials of greatest interest to students and faculty are not in the public domain. In addition, you must also consider other forms of legal protection such as trademark or patent protection before reusing third-party content.”
Copyright! For my friends, family and interested parties who continue to be violated.. For those of you whose works are being taken, altered, and your names removed from your pieces.
“Copyright protection exists from the moment a work is created in a fixed, tangible form of expression. The copyright immediately becomes the property of the author who created the work. Only the author, or those deriving their rights through the author, can rightfully claim copyright. ” For works created after January 1, 1978, is ordinarily protected by copyright from the moment of its creation until 70 years after the author’s death. For works made for hire, anonymous works and pseudonymous works (unless the author’s identity is revealed in Copyright Office records), the duration of copyright is 95 years from publication or 120 years from creation, whichever is shorter.
This means that many of my works are covered at an average of 100 years regardless of whether or not you know who it originated from. Those in my name are mine for 70 years after my death.
So while better protection may exist through the Library of Congress, people are not blind to knowing when they steal and alter what is not theirs. I can tell you exactly how to maintain proof without LOC records. Accidental violations sometimes happen when sharing someone elses work, do be mindful in this situation to mark it as “unknown” until which time the author , artist or creator can be credited. Removing credit from images, taking people’s lines from articles, poetry, lyrics and even off their Facebook comments is stealing.
If you think that public domain means you get to have it It does not! The term “public domain” refers to creative materials that are NOT protected by intellectual property laws such as copyright, trademark, or patent laws.
Be advised! ~Twinkle V.
(Names, likes, and shares have been removed to maintain privacy; the original is available at its posted location)
S.W. Thank you for posting this……I’m so tired of stuff being remade with their initials and no credit given to the real maker.
Twinkle Wood-VanFleet People create beautiful images and they are taken, altered, or re created as something new. People create amazing works of writing, intellectual thought and re create it thinking if they add a few words it’s theirs. It’s not. They need to cite the original.
Twinkle Wood-VanFleet We all learn from somewhere. It’s how knowledge is gained. We take what we learn and re invent our own thoughts, but all of what has been happening to people is too much. Too many people who spend time, their hearts, education, experiences, even their thought process……….. taken.
Twinkle Wood-VanFleet Most welcome D. I know what you mean and it’s a shame that you don’t because you feel you can’t because they won’t be yours anymore. Everything that is yours, remains yours. I risk myself too sharing some, others are protected better. I finally decided that I’m not going to let other people who do these things keep me from what I love, enjoy, find peace and contentment in and what others enjoy reading, too. I know how to keep an eye on my work, where it ends up and any alterations. Most of us who create, whether it be articles, artwork, poetry, etc don’t mind our pieces being shared, all we want is for it to be kept in the original form and credited. It’s the proper way. x
J.W. I often wonder about that in regards to photos I post. I post them for everyone to enjoy, but I would hate for someone to take credit for them. I should probably watermark them, but it kinda ruins the photo…
Twinkle Wood-VanFleet Right J! I’ve seen a few of your photos. Beautiful ones, too. And I know what you mean about watermarks. We just shouldn’t have to, please consider adding your c (name) in an area even though it’s already yours. At least if people use the share button it’s reasonable because it’s tracked directly from you, your original share. But people even removed that. The other day a lady posted a graphic and even though she shared it to me and others, I asked permission to re share, she didn’t even want credit necessarily because sometimes we share to just share, but it was important for me to credit her because for one it’s right and secondly I’m thankful for all I get to see, and I’m appreciative of time and heart each of you put into what you do, and I like to say thank you when I can. I know, well we all know for each other, we’ll never be able to get to everyone’s shares to thank, but when we can it’s nice. I’ll never be able to get to all of yours, there’s no way all of you can get to all of mine or each other’s either (too much activity ol/fb etc) but when we are able it’s nice.
D O’N I had someone take poetry I wrote from me and took credit for it.
So it rare that you see my poetry . Sometimes they change the words just a tad.
I would share more if I knew it wasn’t taken.
I will add though that when you do searches for quotes or pictures a lot come up without any ones name on the work.
I like the idea of putting unknown on something that’s not marked but then does it give someone the opportunity to say … I wrote that or that pictures mine ?
Twinkle Wood-VanFleet Yes and no D. Yes in that anyone can claim anything, the opportunity is always there to claim it, no in that when it comes to you being the actual writer up against them taking it or altering the piece they would have to prove it was theirs before it was yours. Most artists have proof simply because they were the ones who created it. Think about this. In this example, I’ll use only FB as an example with something shared that’s been shared no where else.. Something is posted on Facebook for the first time. You, me, someone else. Later at any point it re appears in someone else’s name. A record of proof has already been created. Your proof. Facebook itself is a record of proof in it’s own way. Each post is time stamped. How would the other person be able to claim authorship? The only way they could is to then claim they have an original in hard copy or digital form prior to sharing. Being on FB doesn’t allow others to take. Facebook terms and conditions grants FB uses but not individuals. And there the legal part begins and a judge will decide. Instead of going on and on, here’s a link that can help too, it refers to unknown authors and images from the web toward the end using MLA citations and “according to” http://uca.edu/writingc…/mla-basics/mla-in-text-citations/ smile emoticon
Having spent nearly 40 years as a writer in one capacity or another, I’ve always been quite knowledgeable in this area. Having a publishing business licensed in the City of West Sacramento in the mid 1990’s and studying Corporate Publishing in 2005 assisted my knowledge even further. Every now and then I try to re share this combined knowledge.
There will always be someone who will try to take your original works from you, but remember there are steps they have to go through to prove they owned your words before you did.
I hope the above has eased you and I hope it has informed those who are inclined to snatch what doesn’t belong to them.
The Living with HOPE Radio Show with Host Trudy Thomas will re air live NERVEmber 19th, 2015 on the Body, Mind, and Spirit Network. Due to health reasons she took leave in January and has been working toward returning.
I’ll be re-joining Trudy as co-host each Thursday at 2:30 p.m PST/5:30 p.m EST with a 30 minute guest speaker, or to review, or to discuss current affairs. The chat room will be available for your combination of listening and chatting pleasure. The call in number for the show is (929) 477-3203.
Please stay on the line to listen live or press 1 to speak to the host.
Together, we’ll bring you a diverse array of treatment options, healing essentials, technology, inspiration, activities, and living with hope.
Since 2007, Trudy’s mission has been to promote awareness for the millions of people who struggle with chronic or intractable pain. To let people know that they are not alone in their journey and that there is life after diagnosis. Trudy discusses various therapies and the emotional struggles that can arise with a chronic incurable condition such as RSD/CRPS and coming out on the other side. She strives to empower, inform and educate.
If you have a topic of interest or would like to request guest consideration and have any questions, Please, contact Trudy at: firstname.lastname@example.org
With “Topic of interest” in the subject line to propose a topic. “Guest speaker” to be considered as a guest and “Question” to ask your question. Please provide your proposal or question for either. This helps filter email and requests to better serve you.
One of our original RSDS Advocates, Mary LaBree, passed away on October 15, 2015 due to complications from Reflex Sympathetic Dystrophy (RSD). Mary exemplified commitment to the RSD community for over 3 decades. As the Director of the New England RSDS Coalition since 1990, Mary sought to educate and bring awareness to the public and private sectors for the disease that was virtually unheard of back then. Originally from Leicester, Massachusetts, she was formally educated at Worcester State University in Worcester, Massachusetts.
Mary secured the JULY Proclamation for RSDS To urge all of the citizens of the Commonwealth to take cognizance of this event and participate fittingly in its observance. Given at the Executive Chamber in Boston, the twenty-fourth of June in the year two thousand and eleven, and of the Independence of the United States of America, the two hundred and thirty forth.” Massachusetts Bill # 5938
She worked both locally in Massachusetts and Nationally.
Mary formed and lead seminars, attended others, developed awareness events, distributed information and educational materials. She spoke with patients, caregivers, physicians, hospitals, insurance companies, fellow educators, universities, other peer groups, and those with an interest to learn about Reflex Sympathetic Dystrophy. She was involved with grants, research and fundraising.
When Mary LaBree began advocating for RSD in the 1980’s the term Complex Regional Pain Syndrome hadn’t been created. While other names had been used previously to describe Reflex Sympathetic Dystrophy (Syndrome) it was most often referred to as RSDS.
In 2012, she reached out to me and a friendship formed. We shared phone calls, messages and correspondence by snail mail. Mary sent me a copy of the photo of she and other’s of the original signing of her proclamation and a copy of the verbiage used to secure her proclamations. I’m privileged to know what Mary looks like. For now, I’ll not share those, nor have I ever. She shared with me 30+ years of everything. How she started, how she educated, how other RSD organizations began, her children, grandchildren, colleagues, the strength it takes to endure; not just in living with pain, but being a part of it.
If you pray, why worry… If you worry, why pray?
I had plans to meet her in person twice. The first time she had to return home early. I was supposed to meet her again toward the end of October or into mid-November. I had just spoken to her less than a week before her passing.
I was in the hospital yesterday, I had an accident with my wheelchair when I tried to back it up ( standing in front of it. ) (Stupid me )when I pushed the button to back it up.. I pushed it the wrong way..And ran over my LEDs from the ankles to the knees. I was really blessed when the ER Dr. Asked what other problems did I have, & when I explained CRPS He said oh Chronic Regional Pain Syndrome , I said yes. He treated me with kindness & care. I’m going to send him a thank you card. He was really kind. You don’t always find a kind caring Dr..pls pray for me to recover. I have a lot of CRPS work to do. I will be leaving for CA in a few weeks. Ty.M
I’m sorry I had a mistake that I didn’t want to have a group pls forgive me, as I pressed the wrong thing, & didn’t realize it until someone told me.
The next message on Oct 12, I missed due to being away and my IM being flooded and then she was gone. I was on the road to and from the Stanford Transplant Clinic for our daughter on the 15th and in the Emergency Department on the 16th due to my cervical spine. Trying to save the puppies life all in between.
The last message was in reference to an accidental group IM.
I had been wondering if she would want to make the plans to meet at the NERVEmber, West Coast Pain Forum for Power of Pain Foundation on November 14th. All I knew for certain is she planned to be here in Northern California on the 23rd of October and would call me.
Permission granted and sent from the Power of Pain Foundation to share in Mary’s memory. Melanie McDowell Awareness and Advocacy Award Nomination 2015
I wish she would have received more nominations, but mine was the only one for her. She was most deserving.
We never know for certain where our conversations go even when we chit-chat on the phone or when we think they are in confidence. I don’t know what Mary ever spoke of me to others, but I know that she must have believed in me enough with what she did share with me to know I would keep it to me and if she didn’t know for sure when she told me she knew as time went on because I’ve never told it.
She asked me sometime in 2013 to consider being trained by her for her Coalition and new endeavors. While I was most honored, I respectfully declined as I was already committed to Power of Pain.
Our conversations also consisted of but weren’t limited to life, color, ethnicity, race, the olden days, differences, equality, change and today. She shared with me uncertainties about people, places and things, and I eased her in certain fear and prejudices. Please don’t misunderstand me, I’m not at all implying Mary was prejudice, in fact, she’s not, though conversations were simply sometimes deep. Mary listened and she learned. She watched, listened to gossip, dismissed it, listened more, read, picked it apart, put it together, and ultimately decided for herself. She wasn’t afraid to speak her mind or share a maybe, what if, what do you think or did you know.
I’m humbled to have been accepted, acknowledged, taught and even loved by her.
Mary was so proud of the New England RSDS Coalition, she was thrilled that the healthcare community was finally beginning to know what RSD (CRPS) is. She was pleased that patients had informational materials to seek out and be provided. She was happy that educational events were provided free to the public.
She told me the story behind July and why her proclamations are for the month of independence and not November. As I stated Mary began educating RSD over 30 years ago. July was chosen for freedom, freedom from pain. It wasn’t until many years later that a national color evolved, and then our month of recognition. Mary was grateful for her closest friends. I know she loved her beautiful friend, advocate and poet, Jane (Gonzales).
I prayed for her health and I prayed for her to achieve her life’s work, her mission to create awareness and educate on RSD, her purpose to continue doing so, and her hope for our future.
You did Mary! You really did! You achieved them all to the last breath.