Real Love and Good Sex: for Chronic Pain Patients and Their Partners by Ms Barby Allyn Ingle and Mr Ken Ray Taylor

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Real Love and Good Sex: for Pain Patients and Their Partners by Ms Barby Allyn Ingle (Author), Mr Ken Ray Taylor (Author)

http://www.amazon.com/Real-Love-Good-Sex-Patients/dp/0615961010/ref=sr_1_1?ie=UTF8&qid=1403059408&sr=8-1&keywords=real+love+and+good+sex

I was honored to write the forward to this book.

Please keep in mind that the Ms Barby has Reflex Sympathetic Dystrophy and the tips she gives is her own, she’s not a sexual professional or expert. But a professional in her own life and sexuality living with a chronic, incurable, neuro autoimmune disease which affects the Central Nervous System, the Limbic System, Autonomic Nervous System, and most of all the Sympathetic Nervous System (also known as Fight or Flight) and multiple other bodily functions. The Autonomic Nervous System consists of both the Sympathetic and the Para Sympathetic. Depression is often a secondary diagnosis to RSD/CRPS, however that is not an issue here.

Barby and Ken attempt to help the reader or partner dealing with pain understand that the sexual component in a relationship is still possible. Perhaps not each and ever moment of the day, but that it is possible. Sex induces endorphin’s which in turn reduces chronic pain.

I am in my 14th year with this same disease.

All things are possible. You won’t know if you don’t try.

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

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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.

Nobody Said It Was Easy..

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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 …

Will!

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..

Auto pilot!

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..

~ #TVa

#StrongerThanPain

(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)

Toxic Neuropathy Patient- Kimberly Neff

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Kimberly 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.

A Call for State Legislation to Support an Increase in Abuse Deterrent Formulations (ADF) Allowing Chronically Ill Pain Patients Better Access to Life Giving Medication | Power of Pain Foundation

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A Call for State Legislation to Support an Increase in Abuse Deterrent Formulations (ADF) Allowing Chronically Ill Pain Patients Better Access to Life Giving Medication | Power of Pain Foundation.

By Barby Ingle, Chairman
Power of Pain Foundation
facebook.com/powerofpain, twitter.com/powerofpain
5/8/2014

Power of Pain Foundation 2014 Top-Rated Great Nonprofit

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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

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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!

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!

Seeking Participants for Faces of Pain Video 6 By the Power of Pain Foundation

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Seeking participants for Faces of Pain Video 6 by the Power of Pain Foundation.

Please send your photo (head shot or body shot, family photos, photos with your pets, etc are most welcome also, just let me know who you are in the photo)
Name
Age
Location (City and State)
Reason for diagnosis IE: Nerve damage, Carpal Tunnel, Surgery, Break, Bite, Disease, Heart, etc.
The year of diagnosis or the years with diagnosis.
Includes All Nerve Diseases and Disorders. Autoimmune, Neuropathic and Other.
A favorite quote!
All info will be placed on your photo.

If you need some anonymity to participate, first name and city or state is okay. Please let us know!

This video will feature “My Only Consolation” written by Jane
Gonzales” and sung by Lequita Hoffpauir.

Please send the above information with your photo to twinkle.ca@powerofpain.org
In the Subject Line add, Faces of Pain Video 6.

Faces of Pain Video 5 can be viewed here:
http://youtu.be/y8-ngc–Bpw

Participants from Faces of Pain Video 5 are more than welcome to participate again. We would love to have you!

We look forward to showcasing you in our upcoming video!
Thank you!

~Twinkle VanFleet, California Ambassador Power of Pain Foundation

WEGO Health Activist Awards 2013

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I am honored to have been nominated for Best In Show- Community or Forum in this years Third Annual WEGO Health Activist Awards.

My WEGO Health Activist Nominee Profile and Endorsement Page

There are 4 days left to nominate your favorite Health Activist in a variety of categories. Endorsements have begun for those already nominated. Even if you have already been nominated in a category anyone can still be nominated in another.

Think of people who inspire you! People who have not been nominated at all.

You can endorse as many people as you like.

Last year I was nominated for Best Kept Secret and just knowing someone recognized my efforts was enough for me. I shared a first and only post that I was nominated and nothing more. This year, I’m here writing about it. Again I am appreciative of the person who nominated me. Some of us remain in the background in what we do and that is where we prefer it. And sometimes we have to take a moment to consider it’s okay to accept that pat on the back, that thank you for the efforts, care and concern given without ever expecting something in return. It’s those few thank you’s that make all the difference in the world and keep you doing what you do despite the hardships, pain, and emotions that come with doing it.

Thank you, Barby Ingle!

WEGO Health is a different kind of social network, built from the ground up for the community leaders, bloggers and tweeters who are actively involved in health online. WEGO Health is a platform for committed health advocates to foster new relationships, gain access to helpful resources, and to grow their communities. And it’s free.

WEGO Health provides countless chances for you to connect with others who can relate to what you do, share your perspective or experiences, and spread the word about issues that are important to you.

Congratulations to all Nominees and all To-be Nominees!