The Power of Advocacy – PainPathways Magazine.
An amazing article! I hope you enjoy! ~T
The Power of Advocacy – PainPathways Magazine.
An amazing article! I hope you enjoy! ~T
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
Take comfort in your friends
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 hurts sometimes
And everybody hurts sometimes
So hold on, hold on
Hold on, hold on, hold on, hold on, hold on, hold on
I will never tell anyone who I speak of but He is my best friend. He has a part of my heart that no one will ever have or take from me. He has my unconditional confidence. He has it over my own family and my closest friends. I grew up with him, we went to high school together, lived together. I would absolutely bounce my own family for him! I have memories in photos, heart and mind, no one else has.
If you don’t understand the title, you don’t need to.
I miss him!
I love you M forever my family, my brother.
Real Love and Good Sex: for Pain Patients and Their Partners by Ms Barby Allyn Ingle (Author), Mr Ken Ray Taylor (Author)
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.
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.
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.
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)
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