The Communities in which we strive for

Posted by twinklev

I first began to advocate in 1985. I’ve told the story before at least in part. I was 15. I started college later that year. Majoring in Criminal Law, a minor in Drama/Professional Acting. It should have been the other way around, yet the likelihood of a career in one profession over the other made that choice for me.

By 1990, I was on my way to the big time. My husband sent me! I had graduated from professional acting and modeling school, I had an agent, I was really good! The modeling wasn’t what I wished for but it did give me the presence and poise to walk with style and later in life would become a success in another way. I had only began to bloom in high school, the shy one who knew all her lines, all of them. Just couldn’t do a thing with it. Learned method acting, learned to emote, learned it all and I left them speechless at my audition at JRP.

Two things happened that same year. I lost my twins inside me and I closed my dads eyes. The commitment to advocacy, the Social Security Administration, the Appeals I wrote, the diapers I changed, the administration’s I fought with, while the man lay dying in the living room of our home. We won! I won! My Daddy received his first check within a week after his death. Yep! From the onset of his inoperable stage 4 lung cancer to the date of his death was 5 weeks. I was 22. I had 2 little girls. I had been married 5 years. I had the hospital in Chico, CA send him home to me by ambulance. He would die with me!

Compassionate Choices, I fought for years. I believed that California should have the same law that Oregon had. Enough of that!

My young nephew has Parkinson’s Disease. He was only a teen when diagnosed. He is only in his 20’s now.

The CRPS/RSD Community means so much to me and has for so many years, but my wings have never been to be clipped. Lock a collar around it to show who I belong to, Tat brand it to show what I am, proud! Shaking those slave bells around my ankle is the all time reminder that freedom exists when you are with the one who truly owns you.

So here’s the deal, some of you know from way back when and some of you know I let it out from time to time. No secrets.

I can accept you in all of you as long as it’s not hurting me or mine. I can go as far as to say I love you, care for you, * am grateful for all your hard work, all that you’ve accomplished, just.. just, everything.

You may notice or you may not notice, but I really do not care about most of it. All I really care about is that people aren’t being hurt and that the community is being cared for.

I don’t see all the happenings, I don’t see all the posts, I will never be able to keep up on any daily going on’s. I even miss the good things. Things that people would never want to miss. Yes, I miss them, too!

I will tell you that I must be a hypocrite. And I doubt anyone else will admit they are too. I know you are!

There’s no face to faces online. There is no option to put us all face to face in a discrepancy and lay it all on the line with all involved parties. Get it over and done with!

Since I may not have the option to have that face to face, if I can’t have it in a conference where my part is laid out too? Then there is something wrong.

And until I can, my trust radars are extremely low.

Wouldn’t yours be?

You all probably already know this but..

Keep in mind one thing, if you have a secret, or even something you’ve shared with someone and hope no one else will know?

Expect for most everyone to find out!

Such is life!

Just know one thing, I have kept more secrets that you will ever imagine And I’ve kept more conversations whether they be secrets or not.

Aside from one person, and I’m trying to resolve it. Don’t worry it was more about me than it ever was about you.

I really do forgive!

All I want is for us all to be good to one another.

The one thing that Modeling (walking) gave me, assisted me with, which is partly funny and partly amazing is, partway through my injury, a man stopped me while I was limping and told me I had an incredible walk. Really? I was dumbfounded. I do have a little sway to my walk. Incredible? Not hardly, but wow at the compliment! I use my left leg to pull my right leg and I have learned my own technique in a sense. So.. yeah my walk is me!

All we can ever do as individuals is be who we are. Build on it and who we hope to be. Be happy for ourselves and the person next to us. Shake those pom poms and praise the skies that if it isn’t ourselves it’s someone else to do it for us in the name of the same causes(s).

My son is a volunteer/advocate for Project Ride INC.. (and others) and I’m right there with him sharing those links, caring, advocating.. and it’s not CRPS/RSD.

My Communities are diverse, but my heart …

Let me leave you all with this..

“We have all been united by a single common denominator…

3 Girls with RSD/CRPS

Posted by twinklev

Megan 15, Tori 15, and Gracie 11.

Help These Girls Get the RSD/CRPS Treatment they need!

Megan Manuel (15)

http://www.gofundme.com/2f7l8g
Megan needs a Spinal Cord Stimulator

Tori Quinton (15)

http://www.gofundme.com/Help-Tori-get-better
Tori needs Calmare Therapy

Gracie (11)

http://www.gofundme.com/8wjinw
Gracie need to get to Dallas for CRPS Treatment

2 of the girls are 15 years old with RSD, one is only 11 with RSD.
Please consider helping them reach their fundraising goals or by sharing their pages so that they might have an extra opportunity for better exposure. The girls will be featured by the Power of Pain Foundation’s Patient Fundraiser Program August 2014.

As a CRPS/RSD patient myself, I would like to help their pages get noticed too, get the care they need, even if in this small way, so that they might have a better quality of life moving into their adult and teen years. They are each at a precious ages with school functions to look forward to, dances, activities to enjoy. Without pain relief this will not be as possible as most take for granted. As adults it is hard enough, most of us have gone through life lessons to teach us strategies for survival. Adults can barely manage. I believe young ones have it much harder. They need life experiences, good memories to build on.

Their adult world comes soon enough.

Each parent will choose their child’s options, they may even decide on something else along the way…

Any recognition for Megan, Tori and Gracie is much appreciated.

Thank you!

Stepping Up and Stepping Out with POPF (Power of Pain Foundation)

Posted by twinklev

So many don’t realize what isolation is until they find worth in something or worth finds you. 14 years ago the injury, a right foot mid metatarsal separation changed my life. In my story Emotional Seperation- Fire ‘N Flight Where Pain and Depression Collide by Twinkle (EKV) VanFleet you will find all the truth you need to and you will also find my story seemingly ends in 2006. My story never ended.

As the years moved on, I learned to adapt. I wasn’t even on Facebook until 2009. I was however on Myspace where I met many RSD/CRPS leaders, organizations, shared posts, wrote posts to share. I have really never been one to hide my life. What you see is what you get as long as you are able to perceive it properly and fairly. The innocent looking, pretty, slim princess could so easily be the one selling the drugs.. and me? The pierced girl, who wears bracelets, anklets and just kicks it whether in leisure or professionally could be taken as the mobster. I mentioned recently in a group post, the group that I founded over a decade ago that I am finally glad it’s me. That I am one to be judged, wrongly. For it might be me to make a difference in the world one day on the matter of prejudiced and profiling. In a sense, I truly can’t wait!

I have done so much in the background over the years. The articles I had written, support given and offered, endless hours spent on so many that I let even my own family become second to all else. I fell and I came back up. No one knew it. How could they? I didn’t tell anything.

Approximately a year or more ago, I posted a message that said “I need to find my happy” What I meant was that all my posts were bland, to the point, taken as serious. No online hints. No lol’s, no lmao’s, no ~laughs. Just the post. Someone replied with I’m so happy you have. I was happy, too.

I started sharing posts of laughter, some not so accepted by a few. Some contained curse words, the graphic posts to me were funny and to so many others.. they laughed and laughed. Made their day! To a few they were found offensive, disgusting, wrong.

Suddenly where does that leave me?

It wasn’t until I became a member of the Power of Pain Foundation that I was able to have enough conviction and belief in myself to leave my home again. Weight gain, swelling, vocabulary that in person is stuttered, lapse of memory, the inability to keep on my feet or even feel good about the life that had become me.

The Power of Pain Foundation showed me that I am so much more that the disabilities and inabilities that I sometimes put myself down for.

They have encouraged me to stay me! In all that I am and all that I might become. They have accepted my diversities which so many of you will never, just never understand and they let me embrace it and move forward with all of it.

I get my work done and I fall short from time to time. What I have never had is someone putting me down, but instead encouraging me and thanking me for what I can do, not scolding me for what I am unable to do.

Simply put, work is work. Volunteer or not. Sometimes we all need a nudge just like any other job.. before you say but wait! It’s volunteer.. I can only imagine how many other volunteer positions I might have had that I would have been booted out from already. Why? Because I couldn’t get out of bed that day!

My journey with Power of Pain has afforded me the opportunity and want to get my butt out of bed or force my legs to go because it gave me incentive. We lose so much with CRPS/RSD. We need to know we still have some bit of worth. And you do! We all do. It doesn’t matter how small. It doesn’t even matter if you think there’s nothing left.. you have worth, you always will. Please remember that!

I’ve been POPF’s California Ambassador for a couple of years now. I have organized and attended one major event. I have done guest appearances on the Living with HOPE Radio Show with Host Trudy Thomas, I have Co Hosted a Bit, my grandson was featured in an article with Barby Ingle, I wrote the Forward for Barby Ingle Taylor and Ken Taylor”s book Real Love and Good Sex for Pain Patients and Their Partners

I can’t even remember what else I might have done or achieved.

I thought that I wasn’t doing enough for POPF that I had let them down. These were my thoughts. I thought, my lack of mobility was holding me back from being able to interact with the local community and at large, the entire California Community. I thought that my immediate family issues were setting me aside because I was taking care of them. It wasn’t so.

And then..

I was honored with the promotion to Executive Board Member.

My goal now is to continue on building my POPF California Team. Throughout all of California.

I continue to search at random (with a few helpful hints) for the Power of Pain Foundation’s Patient Fundraiser Program for Youth, each month we choose 4 patients. From neuropathy, nerve diseases and disorders, RSD/CRPS, cancer treatment, medication and devices to other that will ease the life of a youth between 0 and 20.

And we divide $200 by 4. Power of Pain Foundation adds $50 to each chosen youth’s fundraiser account.

If you know anyone who fits our program specifications please contact me.

If you are in California and if you would like to be considered to represent POPF California, in any way, please contact me. Please understand I cannot promise anyone a representative position. I would however be most interested in speaking to you from any area of California of which you live.

Twinkle VanFleet, Twinkle.CA@powerofpain.org

May I add that POPF also offered me something else…

In my 20’s, I was in the running to gather signatures for WSAC City Council

Accidentally in a sense.. Barby Ingle gave me back something, I lost so long ago.

Lets just say.. I’m on it now. And this time, Que Sera, Sera

Continuing to step up and step out..

and about with POPF.

~Twinkle V.

Fight for Tomorrow

Posted by twinklev

Always have faith that a better tomorrow will come. We have to or we won’t survive. The life of chronic pain becomes a family disease. In the last few months we have lost over a dozen people in the CRPS/RSD community. At least half to suicide. Most people do not premeditate their suicide. Many do experience suicidal ideations. It has been noted by professionals that “wanting to die or commit suicide” and suicidal ideations are not the same”. If they were more of us would be evaluated and helped before we get to the point of knowing our pain is never going to managed and into the sudden taking of our own lives. When it happens it is often spontaneous. There will have been signals and signs misread. There is always a cause and there will always be an affect. So many are not afforded proper medical care to reduce pain levels. Opioid medications, such as Hydrocodone, continue to be well versed as a gate way drug to harder and heavier medications such as Oxycodone. It has been said a like a broken record over the past decades that Marijuana and narcotic use causes a person to become high risk for Heroin use. I do not believe this to be true. I do believe it’s possible in some personalities. Addictive personalities perhaps, but this does not include our entire population. I am offended for honest chronic pain patients that need pain care who have been dismissed as drug seekers. I am offended by good providers whose practices have been raided for prescribing Opioid medications.

It’s not the Opioid itself that is the epidemic in our society, it is the person who does not take it exactly as prescribed which can lead to abuse and misuse. Re evaluate the patient for possible addiction or consider another pain management plan of action. Either way they need help!

If pain patients aren’t taken care of and the pain cannot be controlled..

The number of deaths continue to rise. The epidemic will be chronic pain related suicides.

Your autopsy report will probably read.. as a result of depression, misus, abuse or other. There will be nothing about really happened. There will be nothing about the fact you couldn’t get pain relief and your last, very last resort was taking your own life.

DEA.. You don’t know pain until you’ve contemplated.

Speak up and speak out!

Let there always be a tomorrow. Fight for your tomorrow!

Power of Pain Gets Ready for September: Pain Awareness Month

Posted by twinklev

Pain Awareness Month is right around the corner. September is always a busy time for most of us. These are just a few of the Power of Pain Foundation’s events and activities during that time. Please feel welcome to join in on the events you are able to. We have other’s we are involved with from State to State. We look forward to all that you are doing for the mutual cause we share as well as the hope and fight for a cure we all work so hard for when raising awareness. If you have an event you would like me to share, please feel free to contact me.

I wish you pain eased days and nights, ~Twinkle V.

September is Pain Awareness Month!

PAINWeek 2013

WHEN:
September 4, 2013 – September 7, 2013

WHERE:
Cosmopolitan of Las Vegas
Las Vegas
NV
USA

CONTACT:
PAINWeek 973-415-5100
info@painweek.org
Event website: www.painweek.org

EDUCATION
Lyme MS Neuropathy Pain RSD
Audience: physicians, physician assistants, nurse practitioners, nurses, pharmacists, psychologists, hospitalists, dentists, social workers, and podiatrists

The PAINWeek 2014 Schedule at a Glance is now available! Debuting this year will be two new course formats to broaden the educational experience for our attendees:

Frontline Practitioner Focus will delve into the practice challenges that are particular to provider types and practice settings, including hospitalists, nurses, pharmacists and physician assistants
Clinical Conundrums will present case-based examinations of assessment and diagnosis, and criteria for specialist referral in the pursuit of better treatment outcomes

info@painweek.org

—————————
Chronic Pain Solutions Webinar Series
Online
CONTACT:
Power of Pain Foundation

480-882-1342

Please register for Chronic Pain Solutions on Jul 24, 2013 5:00 PM PDT at:

https://attendee.gotowebinar.com/register/7262827706450704128

Dr. Daniel Twogood, D.C., has been practicing chiropractic medicine in Southern California for 30 years. The doctor will describe 10 steps necessary to lower or eliminate chronic pain. This program does not work for everyone, but is noninvasive and we hope that attendees take away a few good pointers from it. This webinar not a cure, it is a tool to help people manage their chronic pain.

Dr. Twogood will discuss that chronic pain is caused by ongoing inflammation which is caused by specific substances in the diet, food additives & medication. He was also on the blogtalk show Living with Hope, sponsored by the Power of Pain Foundation in May 2013.

Over 100 million Americans suffer with some form of chronic pain such as back pain, fibromyalgia, migraines and arthritis. His book is easy to read and lists the ten steps necessary to eliminate chronic conditions fibromyalgia, headaches, psoriasis, Crohn’s disease and more, based on this doctors findings over all the years he has been practicing medicine.

Where conventional medicine isn’t always effective, Dr. Daniel reports that relief is available by following these 10 steps outlined in his book. Most patients he works with recover well before 90 days.

After registering, you will receive a confirmation email containing information about joining the webinar.

The Power of Pain does not endorse the presenter or their products. This is being offered as a tool that people in pain and their caregivers can listen to, ask questions, and start a discussion.

——————–
POPF’s P.A.I.N. Summit 2013

WHEN:
September 14, 2013 @ 8:00 am – 4:00 pm

WHERE:
Scottsdale Healthcare Shea Conference Center
9003 East Shea Boulevard
Scottsdale,AZ 85260
USA
COST:
Free

ONLINE and in PERSON

CONTACT:
Power of Pain Foundation info@powerofpain.org

The 7th Annual P.A.I.N. Summit hosted by the Power of Pain Foundation provides a great avenue for pain education for providers, patients and their caregivers. This year’s conference consists of an exhibit area and educational sessions that focus on better diagnosis and treatment options for pain patients, chronic pain issues (as a whole), prescription monitoring programs, and Proper Opioid Management. There will be breakfast, lunch and afternoon snack provided to attendees.

The event will be hosted by Brittany Brannon, Miss Arizona USA 2011, model, and RSD patient. The event will also feature two celebrity speakers, Dr. Natalie Stand, MD winner of the Amazing Race, and WWE star and professional wrestler, Raven.

The day will consist of two sessions.
8am – 1:00pm The morning sessions are focused for healthcare providers. This includes all areas of expertise; anesthesiologists, complementary medicine specialists, emergency room, general practitioners, internal medicine, neurologists, nurses, orthopedics, pharmacists, physiatrists, physician assistants, primary care physicians, psychiatrists, surgeons, and therapists. Any clinician who practices, or is interested in practicing, pain management from an integrative perspective, will benefit from the meeting. HCP’s will be introduced to the rapidly expanding field of diagnosis and treatment. This conference will proved attendees a greater awareness and understanding of the need to appropriately identify, diagnose (HCPs only) and treat/seek treatment of common types of pain, including fibromyalgia, painful diabetic peripheral neuropathy and other chronic pain conditions.
1:30pm – 4:30pm The afternoon sessions will be filled with patients and their family/ caregivers. This portion of the conference will provide attendees a greater awareness and understanding of the need to appropriately identify, and treat/seek treatment of common types of pain.

There is no charge to attend this conference.
Schedule (tentative)
HCP Sessions
8:00 am – 4:00 pm Ongoing Registration Breakfast served Hosted by Brittany Brannon
8:15 am – 9:00 am Keynote address: Preventing complications that arise from diabetes such as peripheral neuropathy (pain)
Dr. Natalie Stand, MD, Amazing Race Winner, USC Pain Clinic
9:10 am – 9:55 am An Integrative Approach to Chronic Pain Dr. Philip Getson, DO, Drexel University, Philadelphia, PA
9:55 am – 10:40 am Cultural Competency and the Patient in Pain Dr. Maged Hamza, Virginia Commonwealth University
Pain Clinic Director, Richmond, VA
10:40 am – 11:20 Evidence Based Chronic Pain Care Linda Watkins, PhD, University of Colorado
11:20 am – 12:00 Complementary Medicine and its role in Chronic Pain Management (TBD)
12:00 pm – 1:00 Open Discussion with the Speakers and Attendees Lunch is served, Exhibitors

Patient/ Caregiver Sessions
1:30 pm – 2:30pm An Integrative Approach to Chronic Pain Dr. Philip Getson, DO, Drexel University, NJ
2:30 pm – 3:15 pm Prescription Drug Monitor program Explained Rob Kronenberg, PharmD
3:15 pm – 4:00pm The Patients Perspective; At Home Pain Coping Skills Raven WWE Wrestler, Barby Ingle Power of Pain
Foundation, and Diane Kennelly AZ Fibromyalgia Group Leader

If you are unable to attend in person, you can attend by watching our UStream Channel
http://www.ustream.tv/channel/power-of-pain-foundation

——————–
AANEM 60th Annual Meeting
WHEN:
September 17, 2013 – September 20, 2013

WHERE:
Montreal
QC
Canada

Event Website- http://www.aanem.org/Home.aspx

American Association of Neuromuscular & Electrodiagnostic Medicine

———————

American Academy of Pain Management

WHEN:
September 26, 2013 – September 29, 2013

WHERE:
JW Marriott Orlando
4040 Central Florida Parkway
Orlando,FL 32837
USA
CONTACT:
209-533-9744

Event Website-

http://www.aapainmanage.org/conference/annual-clinical-meeting/register.html

The American Academy of Pain Management’s 24th Annual Clinical Meeting

Come for the education, the experience, and the pure enjoyment!

Join us at the Academy’s 2013 Annual Meeting, Exploring the Science, Practicing the Art and expand your knowledge and understanding about pain management, meet some of the most forward-thinking experts in the field, gain practical hands-on experiences, and have a great time!

Who Should Attend – Any clinician who practices, or is interested in practicing, pain management from an integrative perspective, will benefit from the meeting.

—————

Institute on Psychiatric Services

WHEN:
October 10, 2013 – October 13, 2013

WHERE:
Philadelphia
PA
USA

Event Website- http://www.psych.org/

—————-

ASA Annual Meeting

WHEN:
October 12, 2013 – October 16, 2013

WHERE:
San Francisco
CA
USA

American Society of Anesthesiologists

847-825-5586

Event Website- http://www.asahq.org/

————————————-

NERVEmber

2013 Scottsdale Headache Symposium

WHEN:
November 13, 2013 – November 17, 2013

WHERE:
Scottsdale
AZ
USA

CONTACT:
American Headache Society
Event Website- http://www.achenet.org

——————-

Comic Pain Relief

WHEN:
November 8, 2013

WHERE:
Chandler Center for the Arts
250 North Arizona Avenue
Chandler,AZ 85225
USA

CONTACT:
Power of Pain Foundation 480-882-1342
info@powerofpain.org

Event Website: http://powerofpain.org/
Comic Pain Relief 2013 presented by the Power of Pain Foundation for NERVEmber. More Info to come!

Comic Pain Relief is a charity show to help raise awareness of chronic pain issues through a great social event using comedy. The event is open the public.

The Comic Pain Relief show will take place to help raise proceeds and support for low income and under-insured patients who are affected by chronic pain conditions such as Post Cancer Neuropathy, MS, Lyme Disease, Diabetic Neuropathy and Reflex Sympathetic Dystrophy.

Neuropathy pain conditions affect people of all ages, and races. There are over 100 million Americans with Chronic Pain.

Ken Taylor
Ken is the Executive Director of the Power of Pain Foundation, and an expert on several neuropathy conditions. Ken@powerofpain.org

Reflections Of…

Posted by twinklev

The last week has been a bit overwhelming and my previous post somewhat confrontational. That is not the image I want left etched in the minds of my readers, followers or the communities in which I’m involved. I do not belong to a single community, but several. Contrary to what has suddenly become popular belief I am not hateful, bitter or spiteful. I have never in my lifetime been out to hurt anyone, I have only ever helped others. Before the injury which led to my CRPS I took care of children that weren’t my own, one had no blood relation to me or my children, other’s were by blood and did not include my own. I breast-fed a child that wasn’t mine because her own mother couldn’t and the baby couldn’t take any type of formula. I saved that baby’s life. I had happened to just give birth to my second daughter 2 weeks before and so was able to be a surrogate for her.

I cared for 2 dying people. I literally closed one of their eyes upon passing. I was not even old enough to really be put in the position to, but I was and I did.

I’ve lived a life of service.

Before I entered the CRPS Community, I was a controversial writer, reporter, small time. Published in various areas of writing, soft erotica, dance, poetry, I owned a small publishing business for a time on top of a 60 hour work week working for someone else and I was still busy doing for other’s.

I’m not here to sugar coat anything. And especially not from the last few days.

I’ve had attempts to add me to friends lists with names such Nancy Drew (Hardy Boy’s Nancy Drew Mysteries, remember those days?) I had a Mary Mack on my list that I didn’t realize was there (Mary Mack Mack Mack all dressed in black black black with silver buttons buttons buttons all down her back back back, remember the old kids clapping game?) and several other fictitious play names have tried to add me My support group has an influx of people attempting to join. I’ve had pages go up about me, one taken down, I’ve been called awful names, I’ve been told I’m going to be sued, I’ve been apologized to, and told if the person knew my name they would address me by it. I didn’t understand this all day yesterday because the person was messaging me to my name. Then I realized she must think I’m using a nick name. So many of them do. It was assumed I was also.

I’ve been kicked out of what I will call a group to give it anonymity., I will not mention the name and if asked I will not tell you. I honestly do not know if it’s common knowledge or not. All those involved were removed from what I understand. It did seem a little odd for me as I had not posted there at all. I cannot let it hurt me, anymore. I admit that it did! Very much so! I have no animosity toward the administration for their decision.

While many are very upset with me, I do not have any regrets in regards to letting everyone know that the information I posted in the comment section of the previous post was truthful and accurate.

My only regret if it’s even a regret at all is that when push came to shove I shoved back with a vengeance.

Would I do what I did again? I’m not sorry to say, yes! Yes I would! I don’t need popular to survive, I only need to survive. I am not just a CRPS survivor, no….

I am simply a survivor!

My life has shown me that from the very beginning in all it’s let me see and feel for myself.

I wish you all pain eased days and nights,

Proof of my name is included.

~Twinkle VanFleet

A New Beginning: My Life with RSD

Posted by twinklev

A New Beginning: My Life with RSD.

The above blog belongs to featured Blog Talk Radio Host Trudy Thomas.

The Living with HOPE Radio Show is Sponsored by the Power of Pain Foundation.

Living with HOPE began in 2007 under the original title Living with RSD. It was Trudy’s hope to learn more information about her own health issue, the debilitating and painful illness RSD/Reflex Sympathetic Dystrophy and with that a show was born. Trudy interviews doctors, therapists, caregivers, and patients; both traditional and alternative practitioners with expertise that runs from prevention to cutting edge technology.

Trudy empowers, informs and educates her listeners with information that may not be readily available in their local area. Through the power of the internet she has the ability to communicate with and speak to some of the most knowledgeable doctors and researchers in the world.

Some Topics have included: Meditation, Biofeedback, Guided imagery, Relaxation techniques, Breathing exercises, Holistic healing, Coping strategies, Distraction, Depression, Spinal Cord Stimulation (SCS), Pain Management, Medications, Chronic Pain Treatments, Ketamine, Calmare (Scrambler Therapy), Cortical Integrative Therapy (CIT®), Mirror therapy (Mirror Box), DMSO, Low Light Laser Treatment Therapy (LLLT), Functional Restoration, IVIG, Neuropathies, RSD/CRPS, Neuro Inflammatory Disease (NID) and much more.

For more information on how you can listen or even call in please click HERE.

—————————————————

Listeners are encouraged to call in to ask questions of the guests during the show 1-347-884-9691, and if you miss the show you can listen later by clicking on the play button or downloading the shows archive. If you are on the go, you can call into the show through your home phone or cell phone at the above number and listen live. To speak with the host or ask the guest a question press 1, you can still listen to the show while waiting to go on the air, don’t hang up! Your questions and comments are important! A chat room is also available during the live show.

Living With Hope is broadcast live on Monday’s 4:00 p.m pacific and Friday’s 9:oo a.m pacific.

You can post your questions in the chat room to be answered on air. If the time is not convenient to stop by the live shows, you can listen to the archives at any time on the radio page.

Savy Seniors, Trudy’s newest show is live on Wednesdays 3:00 p.m PST. with co-host, Sharon Rowell covering all the latest news about health, medicine, safety, care taking and programs that are available to help seniors live a fun, productive and long life.

And, for fun of course Trudy does a Saturday show, 3:00 p.m PST, with readings from spirit given by Seers of the Soul and lots of fun music from the 50′s-80′s. Oldies but goodies.

If you are interested in being a guest on any of these shows, please email Trudy at goldfield_nv@hotmail.com.

RSD Patient Seeks Community Support

Posted by twinklev

In a telephone interview yesterday May 14, 2013 a Reflex Sympathetic Dystrophy patient stated she has temporarily lost custody of her 16 year old son to Department of Services for Children, Youth and Their Families (DSCYF) and they are trying to remove her 9 year old daughter. The patient from Delaware shared that the vibrations and sensitivity to her hearing has been documented by her doctor and that children services believes she has a mental disorder. Apparently a case worker for the State did a search for CRPS/RSD and found an article which included “Emotional Disturbance” as part of the condition and is using this against her.

Let me try to be more specific while CRPS/RSD can cause a number of secondary symptoms it absolutely does not mean everyone will have them. Unless your doctor has diagnosed you with a mental disorder I do not think this type of state worker is qualified to do so this way. And certainly not by Google search.

Jim Moret, Host of Inside Edition, Attorney and Author of The Last Day of My Life describes his own journey with his son’s CRPS diagnosis in When Pain Becomes the New Normal.

Many of us already face the stigma involved with Complex Regional Pain Syndrome formerly known as Reflex Sympathetic Dystrophy first discovered during the civil war by Silas Weir Mitchell. It is not a mental disease or disorder. It is a physical condition which begins with physical characteristics and symptoms. www.powerofpain.org www.rsds.org

Because this illness is so misunderstood and because there are still so many that are uneducated regarding it’s existence patients face anything from “but you don’t look sick” to “you must be a drug seeker”. This disease does not discriminate! Even children can develop it.

A very high percentage of us, I don’t have the exact statistics, yet I’d guess it to be in the high 90 percentile were active members of society, we worked, raised children, were active in our lives, if single parents raised children alone, some of us had everything, others like myself had enough to just be happy.

Now let me ask you this…

Why would we give all that up for this?

I admit I worry about the single mothers out there with CRPS/RSD who lack family support. Especially when the family does not believe in the illness and when the patient is on disability and the family thinks the patient should be working. Again no education and understanding.

Many don’t even want to know. Do you know how many times I have listened to patients tell me how they tried to reach out to their families, spouses, children with educational material, videos etc, just to learn those people were not interested?

To me it’s no different than learning about Parkinson’s, Heart Disease, Diabetes or any other illness. Would you be interested in that?

This is why ongoing awareness for Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy is so very important and why the power of community is just as important.

There are many disabled parents out there in the world caring for their children.

Each CRPS/RSD patient should be treated on a case by case basis, we should not all be clumped together, one size does not fit all, but the diagnosis is the same.

Autumn asks for your help. She asks that anyone who can come forward to write a letter on her behalf, make a phone call or support her in any way to email her at: Autumn Stevens

~Twinkle VanFleet