Pain Awareness Month 2014
Help Sara move forward in her life by considering to support her medical treatment fund. Sara, like many of us has CRPS/RSD and is trying hard to work toward her dreams.
Pain Awareness Month 2014
Help Sara move forward in her life by considering to support her medical treatment fund. Sara, like many of us has CRPS/RSD and is trying hard to work toward her dreams.
- A Real Story of Healing With the Help of the Creator
Physical, emotional and spiritual challenges can be part of life. Author Donna Nefferdorf has faced them all and tells how she has been able to overcome these challenges with the help of the Great Physician in her new book “To Know Him Is To Love Him.”
The early response from readers to this heart-felt tale of faith has been remarkable.
July 12, 2014
No one can honestly deny the world is filled with suffering; physical illness, disease, and mental scars that have carried on for generations. Is there a way to heal? And is it open to each and every person, if they open up to be healed? This compelling subject is addressed, by author and minister Donna Nefferdorf in her recently released book “To Know Him Is To Love Him” that tells her real-life story of facing these kinds of issues and overcoming them, with the help of her faith and the Creator. Readers are reacting to the honesty and delivery of this message of hope, with enthusiasm.
“I really believe my book offers true hope and healing,” commented Nefferdorf. “To Know Him Is To Love Him, reveals the ‘power of God’s love’ to help anyone overcome their own life challenges. I’ve experienced this power of healing myself, and it’s a blessing to be able to share this experience with my readers.”
The book was published by Advanced Global Publishing in Shippensburg, PA, on June 27th, 2014. It’s currently available across multiple formats including as a paperback through Amazon.com and BarnesandNoble.com and as an ebook from Ingram.
According to Advanced Global Publishing their goal of publishing the book, as well as all of their publishing projects is, “Sharing the love of God one heart at a time to advance the Kingdom of God on earth”. It’s very clear that “To Know Him Is To Love Him” is a book that embodies that goal, an effort to show the power of the divine to heal everyday problems and bring happiness and fulfillment. Nefferdorf eloquently helps readers boost their confidence, self-image, courage, and compassion as they come to see in life they are never alone while battling serious health problems, even life threatening ones, or in better times when they enjoy abundant life as the Creator intended.
Nefferdorf is a minister with Global New Beginnings, which aims to lead others to a “new beginning” with the Father, through a personal relationship with Jesus Christ.
According to early reviews, this new book should go a long way towards inspiring others to explore this relationship.
Evangelist Janice Hollan, recently said, “This book is my friend’s new release and God blessed me to endorse it! I would encourage all to read it! You will find hope, healing, and encouragement in your own life through the testimony of her storms!”
For more information be sure to visit http://www.globalnewbeginnings.com.
Donna is an RSDS Survivor and her story will tell you how. ~T
Sometimes people only see what they want to see, hear what they want to hear, but do they really “hear” , “see” it”? It’s all perception! We live in a world of perception and deception especially online. The typed word is “perceived as “tone of type”. People take from it what they will. Imagination goes with it, fantasy, an idea of who or what you are. Tone of Type means how the other person takes your post, how they imagine it as if it came from your lips. It may not be what it is intended to be though after all there really is no tone, there is no voice, there is no body language.. it’s all the typed word. No seen or heard emotion. Nothing to actually base the tone on. I’ve shared so much through Social Media over the years, but I assure you, even with those who I thought were “friends”, I’ve never shared everything.
Since December of 2012 my life, our lives have changed drastically, but let me be fair in saying that just because I haven’t shared like I used to that it hasn’t continued.
(I know some of you know)
Due to betrayal, I haven’t revealed what I might have. I’ve shared pieces and parts. At the end of 2013 I learned a valuable lesson. One that carries with me. I already had reservations and a trust issues.. that person only reminded me that barriers and walls are meant to be kept up.
My husband had already had 2 heart attacks, he had 2 stents in his heart since he was 37 when the first occurred. The second occurred in 2011 if my memory is serving me correctly. Not many months after that our son, who was a freshman at the time sustained several brain injuries that still exist today, so while I praise all of his efforts and good deeds online, we are still working to relieve him of symptoms, like breathing, smelling and other issues. I will not be ashamed to say that he was diagnosed with ADHD and was on Adderall for it for some time. By choice, partly his choice, we decided to go off the Adderall over a year ago and let his body take it’s course. He’s strong! He’s young! My Lil ‘ OZ! My husband had a quad bypass 17 months ago and is still dealing with Diabetes, Neuropathy, and the aftermath. He takes 11 medications upon waking, 4 in the afternoon, 11 at bedtime. I could care less about me anymore, even though it’s hard. Yep, hard! He took care of the me, I couldn’t keep up on so much, now I have to pull for all of it and I …
Some people think because I have hope in my heart, once every 3 months or so that I’m able to go out that I think my shit don’t stink, that I’m better than someone else…
I’m not! Nor would I ever think it. Seriously? ! I’ll be the play’a in my own game!
A pretty outfit, a little make-up, one leg leaning to the hard left while the other holds it up, wheelchair in the van, the stick out of view, but no one knows..
Invisible diseases are even invisible among the very people they should be acknowledged from.
Even those in remission are looked down upon, I mean you can’t have a bad day, you’re in remission, right? Wrong! Remission only means an absence of symptoms for a time being it doesn’t mean that no symptoms will present.
A time being can be minutes, hours, days, weeks.. there is no absolute!
Those people still hurt too, still feel fatigue and get sore, wear down more quickly than someone without an illness.
I’m not in remission! I just understand those who are.
Now have a CRPS patient taking care of another ill disabled person… add struggles, surgeries, life, precious children, the grand baby. This has been my life. As my son approaches another surgery next week…
When you think you’ve had enough and you can’t go on…. Go On!
Don’t ask me how I do it..
Don’t ask me how I feed the dogs, the cat, love my children, my grandson, my family, however distant…
Or how I take care of my grandson…
Don’t ask me about me..
Don’t even ask me how I lift my eyes..
Just know that I do..
(But he leaned in and whispered it might be worth it)
I originally wrote this weeks ago and used the same title recently on FB to show how proud I am of my (our) grandson De’Mantai Xayvier Howard who made 8 consecutive honor rolls and graduated at the top of his second grade class (and the entire school) . … (this post was written before that and left in drafts)
Philip Getson, D.O. • Yesterday (July 25, 2013) “I was given the honor of having a post on RSD featured on droz.com Please feel free to comment on it”
“I am delighted to get the disease the exposure it so deserves”. “Here is the link for the RSD post” These above are the personal words of Dr. Getson, I have quoted.
I am delighted that Q & A’s regarding CRPS/RSD (Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy) made it back to Dr. Oz. via Dr. Getson.
In addition, the differences between CRPS/RSD and Fibromyalgia were touched on.
Paula Abdul tried to do her part in sharing the debilitating outcome this illness causes, but as some of us know television editing can leave a lot out.
Even so I think Paula made her point. There were some people that tried to convince me of how terrible she did, I re watched that segment I can’t tell you how many times and the bottom line is she did great! How much can you do in so little time. It wasn’t an RSD specific show in the first place it was to showcase a vitamin line of healthier living. So yep, good job for what she had to work with.
For Dr. Philip Getson who has been educating and treating CRPS/RSD for decades, I am honored to have spoken to him briefly via email and look forward to again. I also look forward to the P.A.I.N. SUMMIT hosted by the Power of Pain Foundation during Pain Awareness month where he will be Guest Lecturing. I would love to meet him in person and attend the conference in Arizona but if not, I will still be attending via UStream and have already registered.
People Striving to Make a Difference in the Lives of Those Suffering and Surviving CRPS/RSD.
I’m seeking Photos for a future video that will feature those of you who strive to make a difference in the lives of those with Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy.
Once all photos are in it will be fairly decided who will be featured in the video. Space will be shared with other’s who work just as hard yet has either never been or has rarely been recognized for their efforts. September is Pain Awareness Month and if all goes well this video will debut during that month.
Your photo can either be a head shot or a body shot. Send up to 2 photos, if you like!
Along with your photo, in the email body, please include:
1. Name, Foundation, Organization, Website Name, Blog Name, Radio Station, Etc. (You can also list all of the above)
2. City and State. (Or Province/ Country) (This video is not limited to the United States)
3. A brief bio on what you do (or have done) to make a difference in the lives of those suffering to survive CRPS/RSD. If the bio is too long it may be edited for space.
If you are a Mother or Father taking care of your CRPS/RSD diagnosed child, you are making a difference in the life of someone. If you are a child (adult or minor) of someone with CRPS/RSD and you are caring for your parent, you are making a difference, too.
In your email please add that you are giving me permission to use your photo and info. (I, (your name/organization), hereby give my permission to Twinkle VanFleet and RSD(S)-CRPS Advisory to use my photo and enclosed information for the Video Slide Show Presentation People Striving to Make a Difference in the Lives of Those Suffering to Survive CRPS/RSD that will be made public via YouTube.
I have personally invited a few people to be featured. If you do not get a personal invite from me this does not at all mean that I would not love to feature you. Please don’t feel shy or as if you aren’t good enough or haven’t done enough. You are just as important! This will be an annual project! No one will know from me if I’ve contacted you or if you sent on your own. That will be your business to disclose or not! ~smiles
Deadline- August 15, 2013. If you need a few day extension due to pain, please let me know before the deadline.
Please send to: email@example.com
If you have any questions, don’t hesitate to ask. :)
Independent RSD/CRPS Patient Advocate, Spokesperson, and Educator.
California Ambassador at the Power of Pain Foundation
The following information has been taken from notes as a listener to the show and research, nearly all the words themselves belong to Dr. Victor M. Pedro. I take no credit for these. My goal is to get this non invasive seemingly promising information out so that other’s may find it a hopeful treatment program in their journey with CRPS/RSD, Chronic Pain, TBI’s and other illnesses and conditions.
Yesterday on the Living with Hope Radio show with Featured Host Trudy Thomas and Co Host Barby Ingle . Dr. Victor M. Pedro discussed Cortical Integrative Therapy (CIT®) a technique he uses and developed.
The entire show can be listened to here: http://www.blogtalkradio.com/thebodymindandspiritnetwork/2013/05/29/living-with-hope-with-host-trudy-thomas The Living with HOPE Show is Sponsored by the Power of Pain Foundation.
Dr. Victor M. Pedro’s career began as a Chiropractor and continued on with a Post Graduate in Functional Neurology. He says ” it was a very good starting point for brain function and innovative treatments that could begin to make a difference in peoples lives. He was fortunate enough to receive grant funding from the Rhode Island Legislature which permitted him to do a variety of studies and to study with significant people to get a more in depth and cutting edge picture of what was available in Neurology and how the brain functioned.
Trudy asked ” Does this therapy work for other conditions other than RSD? Dr. Pedro stated Yes! What he wanted his contribution to be is the person credited with creating an algorithm for understanding where in the nervous system to intervene.”
There are plenty of resources that will explain what a brain dysfunction is or pathology is, disease process or diagnostic procedure to figure out what folks are complaining about.
The rehabilitative model is where the challenge for the future lies.
Barby ask’s “Does every patient have a different algorithm? Or do you find they are similar with the same condition? The doctors answer’s ” By algorithm I mean a process we go about to evaluate what the affliction is or what’s wrong with the patient.”
Reflex Sympathetic Dystrophy or Dysautonomias in general are a condition Dr. Pedro has a particular interest in. With this condition he tries to find out how the autonomic system is dis-regulated or not working well and then his team tries to decipher in the patients does this person have Reflex Sympathetic Dystrophy (RSD) because the Sympathetic Nervous System is too high and not being inhibited or is it the Parasympathetic System that’s undergone demise and not effective.
“The treatment is actually different and makes all the difference in the world to the patients outcome, Dr. Pedro say’s.”
Barby ask’s ” Similar to Traumatic Brain Injuries (TBI’s) Would there be a different protocol for that?
Dr. Pedro answer’s “A different protocol in terms of how we’re going to add on different diagnostic pieces to the evaluation. Then we begin to identify precisely which modalities the patient needs. A TBI patient may have a similar pathology of an RSD/CRPS patient, may have similar findings, however we may go about the treatment process slightly differently.”
One of Dr. Pedro’s patients and a good friend of Barby Ingle’s just did an interview which will be released in this Saturday’s (June 1, 2013) edition of Pain Pathway’s Magazine. Please look for it!
Physical, emotional and nutritional needs are also taught this during treatment.
The autonomic nervous system delivers fuel to the body and brain. The autonomic nervous system is the automatic part of the nervous system that controls your heart rate, size of arteries delivering blood or fuel to the body and into our brain itself. This part of the body can be evaluated through a series of tests.
Someone with a compromise in their sympathetic nervous system may not have as much profusion as should be present. The long term consequences are considered regarding how this is effecting the tissue and that’s why the trophic changes present in this pathology.
Barby ask’s “Is maintenance treatment required or is this a one time process?”
Dr. Pedro states “The evaluation process takes 2 to 4 hours depending on the patient.” Based not only on tests, but the patients ability to participate.”
At the end of the evaluation we attempt to draw for them what we believe is wrong in the nervous system and make an educated hypothesis as to where the dysfunction is and what can potentially be done to correct it. A series of windows of observation, sympathetic, autonomic windows of observation more appropriately. We identify these at the end of the initial observation and we give the patient a treatment to see if their pain level comes down significantly or at least appreciatively.
That signals to us they are a good candidate for our program.
Dr. Victor M. Pedro is founder and president of Rhode Island Integrated Medicine, located in Cranston, RI. An accomplished, Board Certified Chiropractic Neurologist, Dr. Pedro pioneered the development of Cortical Integrative Therapy (CIT®)—a breakthrough, research-based treatment designed to address brain and neurological dysfunction in both children and adults.
After remarkable success using CIT® to treat school-age students diagnosed with speech, attention and learning disabilities, Dr. Pedro applied the treatment for use in patients with Reflex Sympathetic Dystrophy or CRPS, dysautonomias, and traumatic brain injury (TBI).
Over the years, Dr. Pedro has lectured extensively on CIT® as a non-invasive, cost-effective treatment for TBI, pain syndromes, dysautonomias, and other brain-related disorders.
Cortical Integrative Therapy (CIT®) has been successful in treating a wide range of painful and debilitating conditions including: ADD/ADHD; apraxia; ataxia; chronic pain; dystonia; dysautonomias; hypotonia; memory difficulties; movement disorders; Parkinson’s disease; Reflex Sympathetic Dystrophy (RSD)/Chronic Regional Pain Syndrome (CRPS); RLS; sciatica; traumatic brain injury; tremors; and vertigo, balance, and gait problems. ©Rhode Island Integrated Medicine
Other keywords in the interview- Inhibitory system, Renshaw cells, Autonomics, Small diameter fibers, Dysautonomias, Limbic system, Antonio DeMazio
http://corticalintegrativetherapy.com/ Cortical Integrative Therapy Rhode Island Integrated Medicine- The Brain Rehabilitative Specialists
~Twinkle VanFleet, California State Ambassador Power of Pain Foundation
If I have mis stated any facts or quotes please contact me at: firstname.lastname@example.org I will make any corrections immediately. Thank you!
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
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Complex Regional Pain Syndrome
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Complex Regional Pain Syndrome also known as RSD | To help the understanding of this condition we look at science & philosophy