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.
RSD Advisory- Where Chronic Pain & Depression Collide 