When You Think You’ve Had Enough Of This Life To Hang On..

Hang On!

“Everybody Hurts”

When your day is long
And the night, the night is yours alone
When you’re sure you’ve had enough
Of this life, well hang on

Don’t let yourself go
‘Cause everybody cries
And everybody hurts sometimes

Sometimes everything is wrong
Now it’s time to sing along
When your day is night alone (Hold on, hold on)
If you feel like letting go (Hold on)
If you think you’ve had too much
Of this life, well hang on

Everybody hurts
Take comfort in your friends
Everybody hurts
Don’t throw your hand, oh no

Don’t throw your hand
If you feel like you’re alone
No, no, no, you are not alone

If you’re on your own in this life
The days and nights are long
When you think you’ve had too much of this life to hang on

Well, everybody hurts sometimes
Everybody cries
Everybody hurts sometimes
And everybody hurts sometimes

So hold on, hold on
Hold on, hold on, hold on, hold on, hold on, hold on
Everybody hurts

——
Hang on!
Sometimes everybody cries…
——
Never let go.. , you want to let go, you don’t have to, you really can hold on,
Don’t let go, live, you have to want to live, we don’t want to die, on the contrary..
We want to live..
Hold on…
Hold on!

Toxic Neuropathy Patient- Kimberly Neff

KimberlyNeffKimberly Neff has Toxic Neuropathy that was caused by a work “accident”. Her story goes as this ““ Two years ago she was working as a security guard in a gate house for a residential community. When a worker from their monthly pest control company came out to spray for ants, she showed him some video footage where ants were coming from the air ducts. So, he decided to push the attic door open and just fill the attic with pesticide fog. He told her to leave both doors open, and that she should be fine: Now Kim is in a wheelchair, she can’t walk on her own, she’s lost most feeling in her legs, she sometimes loses control of her bladder and bowel functions, she has neurological problems and people treat her differently. Kim is currently on 18 different prescription medications/lotions/patches and she is still waiting on Disability for assistance.

The above has been altered from Kimberly’s own words. 

To read Kim’s entire story and consider offering assistance, please see her page at: Please help me, Toxic Neuropathy Patient

 

(This is independent of the POPF’s Patient Fundraiser for Youth)

Kim is 25 and her story touched me.

Power of Pain Foundation 2014 Top-Rated Great Nonprofit

POPF2014TopRatedGreatNonProfits

Great Nonprofits is a place to find trustworthy nonprofits. Their mission is to inspire and inform donors and volunteers, enable nonprofits to show their impact, and promote greater feedback and transparency.

They have chosen the @powerofpain foundation #POPF as a 2014 Top Rated Nonprofit again for the 5th year in a row!

 

Congratulations to POPF on another great accomplishment!

Power of Pain Foundation on GreatNONPROFITS

~Twinkle V.

 

Power of Pain Patient Fundraiser Program for Youth

POPFDONTATE-

Power of Pain Foundation is excited to announce our fundraisers program. Each month POPF will donate $200 that will be spread evenly to 4 fundraisers. Each fundraiser selected will receive a $50 dollar donation and will be hosted on the home page www.powerofpain.org With a focus on youth, each fundraiser selected must be under the age of 21.

We understand the difficulties of raising funds. We want to spread awareness about your fundraiser. We want your story to be heard and have the chance to say thank you to those that do donate. Read someones story, make a donation and feel good about yourself at the same time. No donation is too small. A whole lot of little adds up to a gob!

If you would like to donate to this program and raise the amount that gets spread evenly please click here.

Fundraisers Program

All donations are tax deductible. See your donations directly help others. When you donate to this program your donation will add to the amount that gets spread evenly amongst our fundraisers for the month. It’s a fun and exciting way to see your donation help others. When you choose to donate to this program, your name will be listed as a program sponsor. Have fun helping others and feel good about yourself at the same time.

Please make your donations to this program dividable by 4.

If you know of a youth from infant to 20 years of age, please contact:

Power of Pain’s National Youth Ambassador

Kurtis VanFleet Kurtis.CA@powerofpain.org

or Twinkle.CA@powerofpain.org

We thank you!

My Journey With Chronic Pain By Sara Gilbert Nadler-Goldstein

My Journey With Chronic Pain
By Sara Gilbert Nadler-Goldstein

When one lives their life on a daily basis, no one would ever imagine in the course of a second that it would change forever. I never thought that I would be victim of those very words. On May 24, 2003 I was in a car accident on a parkway and rear ended by two separate cars with two separate impacts. That day changed my life forever. I had been a medical social worker for well over fifteen years spanning the scope of practice from the acute care hospital setting to acute rehabilitation, and then a skilled nursing facility. I practiced in the role of case manager discharge planner. I knew how to navigate the medical system for others.However,you never think that you are going to be the patient. What followed was a year filled with many doctors visits involving many medical specialties including neurology, orthopedics, as well as pain management. I did receive two epidural injections and that did not provide the necessary relief that I needed.
In March of 2004 I saw my neurologist and after an M.R.I. was completed and films were reviewed he stated to me that my back was seriously injured and that I should go to New York Presbyterian Hospital-Columbia University Medical Center for a neurosurgical evaluation. At that point in time what followed was that I was given the name of world renowned neurosurgeon Dr. Paul C. Mccormick Director of The Spine Center at Columbia Presbyterian (Neurological Institute). Little did I know that this was the beginning of my good fortune. On March 30, 2004 my mother accompanied me to the Neurological Institute (Spine Center) where I had undergone this consultation. The Surgeon had told me that I had a herniated disc and that it was affecting various nerves in my spine. He reviewed my medical records, and films.
In addition he even showed us a model of the spine and explained the intended surgical procedure he was to perform. I than arranged to have my spinal surgery at Columbia Presbyterian on April 12,2004. After the surgery I was monitored by my neurosurgeon to evaluate my healing from the surgery,as well as my emotional well being. It was recommended by Dr. Mccormick that I see a pain management physician several months after surgery. He was suggesting this level of care for me as well as educating me on the role of a pain management physician. Dr. Mccormick was most detailed in explaining to me the definition of chronic pain. At that point I was not ready to accept that and I really thought that I could heal myself by means of medication, Physical Therapy, and my neurosurgeon stated that he would give me time to come to terms with the information of my diagnosis of chronic pain. During that time period I tried I tried medications as well as physical therapy. However,there was no improvement in terms of my pain. I was most desperate at this point to accept that I needed help. In May of 2005 I contacted my neurosurgeons office and was provided with the name of a highly regarded pain management physician that he wanted me to see at Columbia Presbyterian.Dr. Michael L. Weinberger Director,pain management center, Chief Division of pain and palliative medicine. Dr. Mccormick was going to communicate the necessary medical reports prior to my appointment. At that time little did I know this was the beginning of my good fortune. In June of 2005,when I presented myself to Dr. Weinberger at the pain center. I told him that I was in desperate need of help and that he was my last hope. I communicated to him that I wanted to live a full and normal life with no pain medications. After a through examination was completed and medical records were reviewed as well as films. Dr. Weinberger immediately presented me with a plan of care. He suggested that I consider a spinal cord stimulator as a modality for dealing with my chronic pain. That day he sent me home with a tape about spinal cord stimulation as well as reading material to educate me on this possible treatment option. However, he didn’t initially put me on a regime of medications to determine if it would help me. On my follow up visit several weeks later, I reported to him that these medications were sedating as well as leaving me with no desire to eat,and so dizzy that I could not drive my car and that was not an option for me. At that point the decision was made to go ahead and start the process for a spinal cord stimulator which is an implanted battery pack with leads and electrodes that target the areas of pain with electrical pulses and a vibrating,tingling sensation that reverses the brains signal from perceiving pain to a pleasurable tingling sensation. The process was completed over the period of several months staring with the psychological evaluation to proceeding with the trial. My trial was in October of 2005 with Dr. Weinberger he did an excellent job in mapping out my areas of pain prior to the trial. After the surgery for the trial. I remember being in the recovery area after surgery,and I was crying Dr. Weinberger expressed much concern and I said to him that I am crying for happiness and that for the first time in a year I had no pain. At that time I was instructed to test the device at home for a week (the leads were not permanently implanted,and I had a hand-held device similar to that of a remote control) I was instructed to keep a journal for a week to monitor my pain patterns. A week later I returned to see Dr. Weinberger and his team of fellows and residents at that time,and I reported to them that I had greater than seventy-five percent pain relief and if you can duplicate this for the permanent implantation than I would like to proceed with this method of treatment. I was most determined as Dr. Weinberger knew to live a full an independent life,and to be able to drive to Long Island where my mother resides. In December 2005 I had my permanent implantation of my spinal cord stimulator with Dr. Weinberger.I am most grateful to acknowledge that my goals were achieved not to be on any pain medications,and to engage in all activities for over seven years. This past December the day before the initial implantation, I went into Columbia Presbyterian to have surgery with Dr. Weinberger to replace my spinal cord stimulator battery as it had reached its end of life. I am fortunate enough to say that I have my new spinal cord stimulator battery, along with doing my daily spinal exercises to maintain the health and strength of my back,and attending the gym several times a week pain free. Dr. Weinberger has given me the most important gift and that is to live a full an independent life. It is also extremely important that the patient have an open and honest relationship with their pain management physician as well as the physician working with other physicians on the patients behalf (see Neurology Now Publication on line February 2013 Speak Up blog Collaboration of care at its finest). I was most privileged to have that level of care and continue to have that level of care nine years later. Dr. Weinberger is caring,compassionate,and understanding of the complexity of my medical conditions. He is an excellent listener and understands what my goals are and continues to understand my future goals. His clinical excellence has made these goals a reality for me. In addition Dr. Weinberger understands me as a whole person. That is significant in your treatment because medical health Chronic Pain affects your mental health as well as your outlook for the future,and how you will live your life. This may was the ten-year anniversary since the accident and in June I turned fifty. I could not have reached these major milestones in my life without the caring,compassion,and support that Dr.Mccormick, Dr.Weinberger, Dr.Blanco have demonstrated over the years,and continue to do so. Every day when I use my spinal cord stimulator I reflect to how grateful I am for the special gift that Dr. Weinberger has given to me. This past June I have been under Dr. Weinbergers care for eight years and when ever I thank him which is either at an office visit or a note, or telephone conversation his response is you did all the work I always say to him that I could not have done the work without a good foundation being built, and most certainly he did. The last ten years have not been easy for me there were surgeries, and they are well behind me, and learning and accepting to live a new normal. As a patient you must stay resilient, positive, and strong, and want to be well.

©2013 Sara Gilbert Nadler-Goldstein. All rights reserved!

Sometimes it Takes a Village–to Treat a Patient

Chronic Pain Solutions webinar presented by Power of Pain Foundation

ChronicPainSolutionsWebinar

Chronic Pain Solutions presented by Power of Pain Foundation
Join us for a webinar on Sept. 10, 2013 at 5:00 PM PDT.

Register now!
https://attendee.gotowebinar.com/register/1513684815034504960

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 backtalk 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.

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

 

Chronic Pain Solutions Facebook Page- https://www.facebook.com/events/554858711238301/?ref=2

2013 CRPS/RSD Awareness Walk hosted by Dr. Philip Getson, DO

2013 CRPS/RSD Awareness Walk

This year’s walk is hosted by Dr. Philip Getson, DO and the Chairman is Dawn Hesser.

Date: Saturday, September 21, 2013
Location: Cooper River Park, Pennsauken Twp., New Jersey
Time: 8 am Registration, 9 am Walk starts
Registration: Click Here to register for the walk
Contact: Jim Broatch jwbroatch@rsds.org or 877.662.7737
Questions please email: crpsrsdwalk@gmail.com

Executive Vice President and Director
The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)
99 Cherry Street
Milford, CT 06460
www.rsds.org
877-662-7737
203-882-8362 (f)

RSDSA :: Reflex Sympathetic Dystrophy Syndrome Association

www.rsds.org

Macy’s Shop for a Cause Saturday, August 24, 2013 Please help RSDSA provide education, support, and hope to all  http://www.rsds.org/index2.html

Shop for a Cause

Macy’s Shop for a Cause at RSDSA

 

The above walk is hosted during Pain Awareness Month.  Please be supportive!

~Twinkle V.

A New Beginning: My Life with RSD

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.

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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

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