Living With Hope: Patient Spotlights

 

LivingWithHOPETrudyThomasNewFeatured Blog Talk Radio Host Trudy Thomas puts the Spotlight on Youth related pain and diseases. Each Monday at 4:00 p.m Pacific time/7:00 p.m Eastern.

Patient Spotlight Night to spotlight youth in pain stories of the @powerofpain youth fundraisers –

Tune in to hear about 4 different diseases and how the kids and the families are working to overcome the challenges.

Living with Hope Radio Show on the Body, Mind and Spirit Network

 

Listen to: Living with Hope Patient Spotlights Monday July 21, 2014

To join the shows, Call (347) 884-9691 Stay on the line to listen,  press 1 to speak to the Host or Guests. You can also follow the link above and log in from your computer, use a headset and join in the chat room.

Trudy has been the Nevada Ambassador for the Power of Pain Foundation for years now.

She started her show in 2007.  It has excelled to it’s ‘featured” status on Blog Talk Radio.

The Power of Pain Foundation‘s Patient Fundraiser Program for Youth offers front page exposure on POPF’s main page for those fundraising for medical related issues, treatment, equipment, life saving measures, and more for those between 0-20 years of age.

Power of Pain and Living with Hope offers parents or the youth themselves a chance to tell their stories, teaching us about illnesses we may not otherwise know of, raise awareness in new areas, learn more about illnesses that we do, and show these parents, children, pre teens and teens, we care.

If you know someone who qualifies, please contact us

POPF National Youth Ambassador, Kurtis VanFleet  Kurtis@powerofpain.org

Feel welcome to contact me also.

Trudy is also live Friday morning’s at 9:00 a.m PST. Each show is pain related, whether holistic or conventional. There is always something to learn. Episodes are archived, available to listen to and ready for download.

Advertisements

NIH Announces The Launch Of A Huge Database For Pain Research

NIH Announces The Launch Of A Huge Database For Pain Research.

federal pain database, called the Interagency Pain Research Portfolio (IPRP). 

(Pressed Post)

The Communities in which we strive for

I first began to advocate in 1985. I’ve told the story before at least in part. I was 15. I started college later that year. Majoring in Criminal Law, a minor in Drama/Professional Acting. It should have been the other way around, yet the likelihood of a career in one profession over the other made that choice for me.

By 1990, I was on my way to the big time. My husband sent me! I had graduated from professional acting and modeling school, I had an agent, I was really good! The modeling wasn’t what I wished for but it did give me the presence and poise to walk with style and later in life would become a success in another way.  I had only began to bloom in high school, the shy one who knew all her lines, all of them. Just couldn’t do a thing with it. Learned method acting, learned to emote, learned it all and I left them speechless at my audition at JRP.

Two things happened that same year. I lost my twins inside me and I closed my dads eyes. The commitment to advocacy, the Social Security Administration, the Appeals I wrote, the diapers I changed, the administration’s I fought with, while the man lay dying in the living room of our home. We won! I won! My Daddy received his first check within a week after his death. Yep! From the onset of his inoperable stage 4 lung cancer to the date of his death was 5 weeks. I was 22. I had 2 little girls. I had been married 5 years. I had the hospital in Chico, CA send him home to me by ambulance. He would die with me!

Compassionate Choices, I fought for years. I believed that California should have the same law that Oregon had. Enough of that!

My young nephew has Parkinson’s Disease. He was only a teen when diagnosed. He is only in his 20’s now.

The CRPS/RSD Community means so much to me and has for so many years, but my wings have never been to be clipped. Lock a collar around it to show who I belong to, Tat brand it to show what I am,  proud! Shaking those slave bells around my ankle is the all time reminder that freedom exists when you are with the one who truly owns you.

So here’s the deal, some of you know from way back when and some of you know I let it out from time to time. No secrets.

I can accept you in all of you as long as it’s not hurting me or mine. I can go as far as to say I love you, care for you, * am grateful for all your hard work, all that you’ve accomplished, just.. just, everything.

You may notice or you may not notice, but I really do not care about most of it. All I really care about is that people aren’t being hurt and that the community is being cared for.

I don’t see all the happenings, I don’t see all the posts, I will never be able to keep up on any daily going on’s.  I even miss the good things. Things that people would never want to miss. Yes, I miss them, too!

I will tell you that I must be a hypocrite.  And I doubt anyone else will admit they are too. I know you are!

There’s no face to faces online. There is no option to put us all face to face in a discrepancy and lay it all on the line with all involved parties. Get it over and done with!

Since I may not have the option to have that face to face, if I can’t have it in a conference where my part is laid out too? Then there is something wrong.

And until I can, my trust radars are extremely low.

Wouldn’t yours be?

You all probably already know this but..

Keep in mind one thing, if you have a secret, or even something you’ve shared with someone and hope no one else will know?

Expect for most everyone to find out!

Such is life!

Just know one thing, I have kept more secrets that you will ever imagine And I’ve kept more conversations whether they be secrets or not.

Aside from one person, and I’m trying to resolve it. Don’t worry it was more about me than it ever was about you.

I really do forgive!

All I want is for us all to be good to one another.

The one thing that Modeling (walking) gave me, assisted me with, which is partly funny and partly amazing is, partway through my injury, a man stopped me while I was limping and told me I had an incredible walk. Really? I was dumbfounded.  I do have a little sway to my walk. Incredible? Not hardly, but wow at the compliment! I use my left leg to pull my right leg and I have learned my own technique in a sense. So.. yeah my walk is me!

All we can ever do as individuals is be who we are. Build on it and who we hope to be.  Be happy for ourselves and the person next to us. Shake those pom poms and praise the skies that if it isn’t ourselves it’s someone else to do it for us  in the name of the same causes(s).

My son is a volunteer/advocate for Project Ride INC.. (and others)  and I’m right there with him sharing those links, caring, advocating..  and it’s not CRPS/RSD.

My Communities are diverse, but my heart …

Let me leave  you all with this..

“We have all been united by a single common denominator…

…And that is PAIN” ~©1997-2014 Twinkle VanFleet

dorei3

Sammy

Sammy was featured in the Power of Pain Foundation‘s Patient Fundraiser Program for Youth in the month of May.  The 4 Patient’s chosen are featured on the main page for maximum exposure so that these youth may receive acknowledgement of their campaigns, receive help in funding, and receive shares via community assistance.

Shared from Power of Pain Foundation Facebook Page

@powerofpain would like to thank Enterprise Holdings, Inc for the donation of $5,000 to help fund our youth programs. Thanks to Jeff Koehl (Enterprise Holdings Inc rep), his daughter Sammy and Twinkle (POPF Exec Board) & Kurtis VanFleet (POPF Youth Ambassador) for making this happen!

While my son Kurtis, National Youth Ambassador for Power of Pain Foundation and I work the #POPF Patient Fundraising Program together, during the month of May, he was working it without my assistance.  He found Sammy through random reviewing of CRPS/RSD, Nerve related diseases and disorders, Neuropathy searches etc.  For Sammy, I did not have as much to do with her feature as some may think. Kurtis did! As my own son grows and becomes independent in his own life, he also grows more independent from me. He builds his own archives, his own reminders, his own email reviews. Some of which I have nothing to do with.

The above donation from Mr. Jeff Koehl’s work was so heartwarming, I had to go back and review our records. I did review those records and I did find that it was in fact Kurtis that made the initial contact to him to feature his daughter Sammy.

What Kurtis is unable to do, I do.  What I am unable to do, Kurtis does. What we are unable to do, my girl’s do, what they are unable to do, their daddy/my husband does. We are a family unit. And grandson Tai is coming up in it all.  Already striving for it. Apart of it, educating. He’s 8 years old.

Please take the time to see Sammy’s pages..

Please support the Power of Pain Foundation.

Please support Sammy and her parents in their effort to move forward…

 

Medical bills and travel expenses to doc

Sammy’s Run With RSD

Community

Thank you all!
Together, we can!
POPF2014

 

3 Girls with RSD/CRPS

Megan 15, Tori 15, and Gracie 11.

Help These Girls Get the RSD/CRPS Treatment they need!

Megan Manuel (15)

http://www.gofundme.com/2f7l8g
Megan needs a Spinal Cord Stimulator

Tori Quinton (15)

http://www.gofundme.com/Help-Tori-get-better
Tori needs Calmare Therapy

Gracie (11)

http://www.gofundme.com/8wjinw
Gracie need to get to Dallas for CRPS Treatment

2 of the girls are 15 years old with RSD, one is only 11 with RSD.
Please consider helping them reach their fundraising goals or by sharing their pages so that they might have an extra opportunity for better exposure. The girls will be featured by the Power of Pain Foundation’s Patient Fundraiser Program August 2014.

As a CRPS/RSD patient myself, I would like to help their pages get noticed too, get  the care they need, even if in this small way, so that they might have a better quality of  life moving into their adult and teen years. They are each at a precious ages with school functions to look forward to, dances, activities to enjoy. Without pain relief  this will not be as possible as most take for granted. As adults it is hard enough, most of us have gone through life lessons to teach us strategies for survival. Adults can barely manage. I believe young ones have it much harder. They need life experiences, good memories to build on.

Their adult world comes soon enough.

Each parent will choose their child’s options, they may even decide on something else along the way…

Any recognition for Megan, Tori and Gracie is much appreciated.

Thank you!