My Month In Review- July 13 – August 14, 2015

I spent nearly 8 hours with my mom, dad, and sister-niece July 22, 2015, It was the last day. Mom, Dad. Rosie, my husband Erik and I went up to our daughter Kharisma’s job so they could say “love you”, not goodbye. Erik and I left them at the hotel about 10:50 p.m. that night. They finally arrived from Georgia the evening of Monday, July 13, 2015. We spent that evening together. We also spent the next 2 days together. We parted until we spent another 2 hours together when they arrived for our grandson De’Mantai’s baseball game. We parted again. They stayed with my step brother that week. During that week though mom was able to meet with her brother who she has not seen since the passing of my aunt, her sister in 2003. She was also able to meet up with her sister and her niece who she hadn’t seen since either. I didn’t see her at all that week but I am so glad she was able to see her family, go by the house she grew up in, which also happens to be the same one I did as a little girl from the second grade to the start of high school.

I hope that the time will come again that we can all be together at least one more time. But we know this might have been it. And for this reason, so many wonderful photos were taken to last a lifetime.

I’ve postponed one surgery for another complication.

Our oldest daughter, who turned 27 just a few months ago was put out of work a few days ago for a minimum of 3 months for her Epithelioid Hemangioendothelioma (EHE). It seems to be metastasizing. The several lesions on her liver. One in her kidney, a splenule spleen. Partial collapse of her lungs. Swelling, pain of course, but know what? It’s never over until it’s over.

We are #StrongerThanPain

Working on some exciting projects. Privileged to develop the strategy for the Power of Pain Foundation. Blessed to have people acknowledge my abilities and offer me opportunities to try while acknowledging that minimal time can be spent doing it. Yet, also believing that the minimal allotted availability is wholeheartedly used for the project or another given task.

Assisting in legislative efforts via POPF, SPPAN, and other collaborative efforts to provide information, awareness and hopeful change in matters affecting pain care.

Announcing the West Coast PAIN Summit 2015, Elk Grove, CA – More Info http://powerofpain.org/west-coast-pain-summit on NERVEmber 14, 2015

West Coast P.A.I.N. Summit
Access to Care, Advocacy and Neuromodulation 2015
Hosted by the Power of Pain Foundation and Medtronic Neuromodulation Therapies
Saturday, NERVEmber 14, 2015
2:30-4:30pm
Elk Grove Public Library Conference and Meeting Room
8900 Elk Grove Blvd.
Elk Grove, CA 95624
Elk Grove Library, Elk Grove, CA

Questions: Contact Twinkle VanFleet Director twinkle@powerofpain.org

Our daughter Rikki is doing well as a Coroner’s Assistant. Ozra is thriving in work, goals, his future, and advancement/ promotion in the Sacramento Sheriff’s Department Explorer’s Program leading and teaching others. I’m so proud of all 3 of you.

I did do something without revealing a peep to anyone. I went through the application process on my own, the interview process, and was accepted on another team. It is independent of the Power of Pain Foundation. It is something I have put off for a few years, but had been asked to consider on a personal level by those associated. I’ve been on board since August 4, 2015. I’ll officially be available on August 24, 2015 or there about for this position. It’s not a paid position. An Ambassador for patient relations. It’s providing my knowledge and experiences to other’s who are either considering or are already using the therapy. I will not be providing any professional, medical, or technical answers. I’m very much looking forward to being a part of this team.

I miss my mama. Wednesday, July 15, 2015. 2 days after they arrived. Sitting outside together.

Our Grandson De’Mantai Xayvier (‘Tai) who met his Mimi (Grandma) for the very first time, our oldest daughter, Kharisma, my Mama (center), and our daughter, Rikki. Outside together.