Hope Restored

Hope restored after 6 months of hopelessness is hope forward. I have not yet revealed that I’ve been in the voluntary care of mental health services. I have not revealed what it takes to move on after an emotional catastrophe instigated by the inability to control physical pain. I’ve revealed in part all that I’ve done to survive without pain management and without any prescribed pain related medications at all. I’ve shared that all I’ve had is my SCS/lower extremity. I’ve shared options I had to choose for myself to make it this far due to an increase lower and an unrelenting flare upper, and I’ve shared that I had to choose an option that I never wanted for myself. Approximately 5 weeks ago, I transferred my care to the U.C. Davis Lawrence J. Ellison Ambulatory Care Center which is a teaching facility. Internal Medicine. This was done with the assistance of my therapist’s managed care assistant. One does need a referral from another health care provider to be apart of what I’ve chosen. The teaching, learning and research part of UCD. I want doctors to learn from my complexities, and in this I pray new medications evolve or perhaps some day a cure for CRPS. I hope that together we can learn what causes spread, an injury taking on an abnormal healing path and why it’s always disproportionate to the inciting event. I want my life used while living to be studied, for me and others, and while I’ll give it when I’m gone too, lets learn now so that maybe I can also be blessed with a remission rather than a progression. I’ve already met with my Primary Care provider who gave me 2 referrals. One referral I’ve shared and that is to the U.C. Davis Spine Center – Pain Management which I go to on the 4th of next month. The other was a new Med-Psych which I went to today. These students and the doctors who lead them have been amazing. I’ll not yet reveal who they are, but I must share the compassion and the comfort they provided. Today, my new doctors, stated “We’re glad you’re here, we want to help you”. We want to be a team with you”. The weight on my shoulder suddenly lightened. My therapist currently at another location has told me, several times already, how bright I am, my compassion, my empathy, my care-giving. My new one’s have stated same or similar. My expectations are reasonable. Today, these 2 thanked me! And I had to thank them more!

I’m not crazy! Confirmed again is that I currently (It’s getting a little better) I go too low due to Major Depressive Disorder – Severe. Previously I had the diagnosis of Mild Recurrent Major Depressive Disorder. So I was being maintained with Cymbalta/Duloxetine as the dual combination assistance it provides. Depression and Nerve Pain. So that there are no mistakes in your mind, my depression is secondary to CRPS and the constant roller coaster that’s come with it. I’ve never taken an abundance of opioid pain reducing medications, but I had been helped with a little. I’ve never had more than the little, and I’ve never taken additional for break-through pain. I really tried. There were so many days that I wished my only med was a little higher and there were other times I prayed I had something to help with pain above what my 5 mcg/hr of BUTrans could cover. When I asked the P.A. at my pain management clinic of 12 years, less than 2 weeks before trying to leave to accept an award from Dr. Earl Bakken, Co Founder Medtronic, she did put in to increase me to 10 mcg/hr for 2 months, but not without stating fabrications into the record. I never got it for the purpose I prayed for. I went to receive my award having been without any pain medication and without what I had been currently withdrawing from. When I was dismissed from that practice it what for attempting to correct errors in my medical record 6 days after a 72 hour suicide hold that I did get to come from 2 days later. My medical records indicate that I never told the P.A. of the continued denial of Cymbalta and Zonegran, but a week before my break down, I called and asked to speak to the psychologist on hand. I had also appealed the denial via my pain management provider, not attorney, who had appealed on my behalf. I had already won on January 16th, yet, I never… never received those medications again. It is not possible that my provider wasn’t aware because it was appealed through the clinic with my signature. In addition, when I paid $30 for only 10 sheets of medical records, I found that it also states I work full time as a Graphic Designer. I wish that I was. I don’t work full time, in fact I’ve not worked any gainful employment in 15 years and I’ve never been employed as such. Accidents happen right? Oversights, assumptions? Idle mistakes? I did attend school in 2005 for a Corporate Publishing degree and I was nearly finished when I took a leave to have my first Spinal Cord Stimulator permanent implant, I returned 10 weeks later, yet I’ve not received that full diploma. It’s possible the Graphic Designer came from that, otherwise, there’s no other way. Understand why I tried to correct discrepancies? Fired! There are other mistakes. To set any record straight including the “record” I was never let go by my doctor, anesthesiologist/surgeon. He gave me a block only 3 weeks prior, and I did not ever see him after. My physician did not let me go. The P.A. did using his name. 12 years of a constant. I was a model patient in compliance and utilizing tools that I learned and have gone on to teach from the functional restoration program I completed in 2009. I cannot at this time reveal all, but I will. I’m trying to do it without destroying someone else’s retirement. Yet, how can we, any of us, teach patients to be their own best advocate if we can’t be? If we’re done the first time we ever disagree?

Today, I allowed my new doctors to increase my current 20 mg of Duloxetine that I only just started 5 weeks ago to increment up to 60. 60 mgs is the therapeutic dose to assist in nerve pain.

(Added July 31, 2016)

I’ve learned to not show pain behaviors and I’ve learned not to guard. I learned that the world doesn’t want to hear “chronic pain patient” and I learned that it was my responsibility to be a productive member of society, regardless. I fulfilled everything that someone else taught me and I did it well. I thought that maybe, just maybe, my own providers might be happy that I did this from what I had learned from them, but when I mentioned that I had succeeded somewhere, my records implied enough that the WC insurance company denied approving those medications.

To this day, I have no WC provider for my lower right CRPS extremity. Settled for lifetime medical in 2008. This includes, no physician coverage for maintaining my SCS. The new pain management cannot include that foot because it is another’s responsibility in care.

I’m still very much on my own with a part of me.

I’m back the best I can be. I may never be back to what was, yet I’m back to do all I can do for you because I’ve already been where many of you are heading, I’ve been there in each and most situations a patient can be, and I don’t ever want you to go where… there is no hope.

Hold on, really tight, and hope might be possible again.

TwinkleV @rsdcrpsfire #StrongerThanPain

#StrongerThanPain

 

(Edited to add and attempt to correct typo’s)

iPain Heroes of Hope – iPain Foundation

iPain Hero of Hope Awards 2016

THE INTERNATIONAL PAIN FOUNDATION IS PROUD TO ANNOUNCE TWINKIE – THE GUINNESS WORLD RECORD HOLDER FOR BALLOON POPPING DOG IS AN IPAIN HERO OF HOPE; THE NERVE TO BE HEARD 2016 AWARD RECIPIENT July 25, 2016 – Phoenix, AZ – The International Pain Foundation presents the Hero of Hope Awards annually. Celebrating our 10 year anniversary we have split the award into 4 categories for the first time; The Nerve to Be Heard, Corporate; Caregiver; and Pain Patient, to recognize more outstanding recipients who have demonstrated outstanding commitment to assisting and advocating for people with chronic pain diseases.

Nominations were solicited from the pain community of those who are making a significant contribution within the field of research, education, awareness, or patient assistance for each category.

Twinkie – The current Guinness World Record Holder for Balloon Popping Dog is a 2016 recipient of The International Pain Foundation’s I Have the Nerve to Be Heard Hero of Hope award. This past year we turned to Twinkie and her human Doree Sitterly, to help the pain community get our #painPOP heard around the world. With Twinkie’s help we are sharing stories of chronic pain patients who have ‘The Nerve to Be Heard”. In preparing for the Guinness World Record attempt Twinkie took the opportunity to help the pain community raise awareness about the challenges in receiving proper and timely care as a pain patient and the public health crisis it has created. Since launching #painPOP we have had individuals and groups participate from all over the world; including Africa, Australia, Israel and the UK in an effort to make a difference.

Barby ingle, iPain President, said, “Twinkie is making a difference in people’s lives through her unique talents. The inspiration and energy Twinkie provides in her iPainPOP helps to keep patients positive as we deal with our chronic pain challenges and learn how to become our own best advocate. Thank you to Twinkie and Doree for all you do to put a spotlight on chronic pain diseases and other chronic pain conditions.”

The other 4 award recipients will be announced live at the Music Moves Awareness World Premiere Party on September 1st in Los Angeles, CA.

The finalists in caregiver category: Gayle Taylor-Ford LSCSW, LCAC, Ken Taylor, Melissa Geraghty Psy.D..

The finalists in the pain patient category; Amanda Greene, Twinkle VanFleet, Melissa Geraghty, Psy.D., and Tenah Watts-Callison.

The finalists in the corporate category include Alignmed, Intellectric, and Neuro Drink. The Nerve To Be Heard finalists include Avril Lavigne, Billy Blanks, Jr, and Jennifer Aniston.

Twinkie will also be performing a live painPOP during the finale of our event.

Source: iPain Heroes of Hope – iPain Foundation

iPain Here of Hope Award

iPain Hero of Hope Awards