Christmas 2015

Hanging on the wall in the VanFleet home.

Hanging on the wall in the VanFleet home.

Originally we were going to go over to our son and daughter’s Christmas morning. Instead we went over on Christmas eve. Our son had to work until 2:oo a.m. Father and daughter watched the football game. They can get loud and crazy. I’m not a football girl, so at first I was listening to Spotify tunes and then I hung out with our grandson watching funny Vine video’s. We were all in bed fairly early. My husband and I were the first up Christmas morning. We woke about 8:50 a.m and got up about 9:00 a.m. Everyone else was sleeping. My husband said heck no! it’s Christmas morning they never let us sleep in on Christmas, so he went and woke ‘Tai up and I woke Kharisma. Ozra didn’t get in from work until 3:00 a.m and while I did go wake him, gave him a bit longer. Coffee was already on when I woke our daughter.

We didn’t do Christmas dinner, times are just hard that way and we all did a nice Thanksgiving dinner at our daughter and son in laws. Since our daughter Rikki and Dan were going to his family, we decided to just do Christmas breakfast/brunch and that’s what we did. Our oldest Kharisma, our grandson De’Mantai (‘Tai), our son who had to work that day too, and my husband and I.  All was as perfect as it could be! We’ve made alterations like this before when one or more of us had to work and we couldn’t be together. I’ve even changed the day or time so that we all could be.

Our 9 year old grandson was lit up by the hand made blanket he was gifted from our friend Debbie and the toys and Disney lithographs he received for his advocacy from the Power of Pain Foundation.

We managed to get a few photos before our son left for his second job providing security for the State of California. His first job is an 8 to 5 Monday through Friday. My dad is a retired officer, my son’s God dad is an active officer, and my son is training to be. Recently promoted to Sergeant in the Sheriffs Explorer’s program to lead others as he was the last 4+ years. Former National Youth Ambassador for the Power of Pain Foundation and Executive Board Member that’s where our grandson will be one day.

Father, Son, Mama Xmas 2015

Our daughter returned to work a month or more ago after a 3 month leave for medical reasons. She finally had her MRI at Stanford we hit a snag on. Hoping for answers on tumor growth, intervention, and treatment plan soon. It’s all so ongoing.

In her world anything is possible. Nothing can hold HER back. Her power and ambition are her strength. It is always about HER. Welcome to Her world. Thank you. (For Kay from Ozra)

In her world anything is possible. Nothing can hold HER back. Her power and ambition are her strength. It is always about HER. Welcome to Her world. Thank you. (For Kay from Ozra)

Brother and sister. Ozra and Kharisma.

Brother and sister. Ozra and Kharisma.

 

Father and son spent the morning putting together the 3 way game table that Kurtis Ozra (Ozie) gifted his house. ‘Tai was so excited.

Father and son. (Kurtis Ozra and Erik Kurtis)

Father and son. (Kurtis Ozra and Erik Kurtis)

 

Son and Mother ('Tai and Kay/Kharisma)

Son and Mother (‘Tai and Kay/Kharisma)

‘Tai had to play his mom a few games.

 

And before his Uncle headed out the door for work, nephew wanted some candy…

Nephew and Uncle ('Tai and Ozra)

Nephew and Uncle (‘Tai and Ozra)

 

 

 

 

 

 

 

 

 

Wish we had Rikki with us but we can’t be children hogs. We do have to share. 🙂

I raised some amazing kids, all 3 of them. Daughter Kharisma is a manager, daughter Rikki is an Assistant Funeral Director and son Ozra is everything he can be at 18. I did good! We did good Erik VanFleet! 2016 is 30 years strong. De’Mantai Xayvier is already on his way as a Gifted and Talented Education student. Several honor roll achievements to his name.

Honored to be honored for just being mama. (son and mother, Ozra and Twinkle)

Honored to be honored for just being mama. (son and mother, Ozra and Twinkle)

 

 

Yeah, we all did good!

It was a Merry Christmas!

Ohana.

 

 

 

 

 

 

I hope your Christmas was blessed, too.

 

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Twinkle Vanfleet | 2015 honoree

Twinkle was diagnosed in 2003 with Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy Syndrome (CRPS/RSD), a painful, debilitating and often progressive central nervous system disorder. A spinal cord stimulator has helped manage her pain, and she has expanded her advocacy efforts on behalf of those with neuropathic pain disorders from online to in-person events. As advocacy director and executive board member for the Power of Pain Foundation, Twinkle works on policy efforts, patient awareness and many other aspects of chronic pain.

Read more-

Source: Twinkle Vanfleet | 2015 honoree

I learned in September that I was chosen as a 2015 Bakken Honoree. It didn’t seem real. My pill is my Spinal Cord Stimulator. It has been since 2006. So when I’m advocating for pain medication, I’m not advocating for me, I’m advocating for options and for those who need them to be able use them safely. I don’t disagree that there is a problem with abuse or misuse, but I don’t agree that it’s due to the reasons put forth in the mass push that one thing leads to another. It isn’t always so.

When I say, we, or us, I’m including myself to not dismiss someone else from me. I’m no better than the person who needs the pain reliever to survive and I’m no less than the one who doesn’t.

Andrea Volfova

Prague, Czech Republic
Cardiovascular disease

Bhim Mahat

Kathmandu, Nepal
Cardiovascular disease

David Simmonds

Prince Edward (Wellington), Canada
Parkinson’s disease

Juan Carlos Hernández Corredera

Salamanca, Spain
Barrett’s esophagus

Kerry Kalweit

Pretoria, South Africa
Type 1 Diabetes

Lisa Visser

Orono, Minnesota, United States
Sudden Cardiac Arrest due to a heart defect

Qi Zhang

Beijing, China
Type 1 Diabetes

Sheila Vasconcellos

Rio de Janeiro, Brazil
Type 1 Diabetes

Dr. Thomas Okello

Kamapala, Uganda
Damaged heart valves due to Rheumatic Heart Disease

Twinkle VanFleet

Sacramento, California, United States
Complex Regional Pain Syndrome, Type 2

Vincent Browne

Galway, Ireland
Cardiovascular Disease

Tanya Hall

Melbourne, Australia
Cardiac Arrhythmias, including atrial fibrillation

http://bakkeninvitation.medtronic.com/honorees-winners/

Only 2 of the 12 Honorees are from the United States. I’m one of those 2. Each honoree has an amazing story to share and is living with a form of medical technology. I advocate for these options as well. Without force or mislead intentions, options are what allow us hope and survival. It isn’t about Pharmaceuticals, invasive treatments, or the non-invasive it’s about what relieves each individual. What might work for me, may not assist another and what may not assist me, may respond to someone else.

I could have removed the body piercings from my life. I could have. They didn’t evolve from nothing other than pain in the first place. Each piercing multiplied as a diversion to pain during the time when I was left in medical limbo. They were my self-medication. No! Not everyone becomes an addict. Not everyone in unrelenting pain seeks more and not everyone turns to heroin. I’ve taken enough in my lifetime and I’m not nor have I ever been in the classification of this epidemic. I leave the piercings so that you will judge me. Falsely judge me. It’s your mistake, not mine. It’s your perception, what you create and believe in your mind. I chose to fight pain, and learn from it. I chose to use the tools provided to me in the multidisciplinary approach and in the Medtronic Spinal Cord Stimulation and I choose to maintain the lowest dose of a single type of pain medication in order to allow me to function enough to get out of the home a few times a year, weight bare enough to feed my dogs, not be confined to a wheelchair, advocate with the Power of Pain Foundation, watch my grandson grow, be a part of my children’s lives and care give to my husband of nearly 30 years.

I’m not able to drive; I have to rely on someone else. I have to work around their time, schedules and life in order have that ride.

Sometimes it’s enough to want to give up, but I haven’t. The Power of Pain Foundation has honored me in my decline and ability as much as I have honored them in all that they do. It’s for this reason that they are the grant recipient for my award.

Only once in a lifetime are you recognized for something so humbling and it was for nothing more than using my new life to live on and give on because that is what I’ve done.

It’s truly an honor! Thank you Dr. Bakken!

To be continued

 

Mid Metatarsal Separation | Lis Franc Separation

 

“Lisfranc joint injuries are rare, complex and often misdiagnosed. Typical signs and symptoms include pain, swelling and the inability to bear weight. Clinically, these injuries vary from mild sprains to fracture-dislocations. On physical examination, swelling is found primarily over the midfoot region. Pain is elicited with palpation along the tarsometatarsal articulations, and force applied to this area may elicit medial or lateral pain. Radiographs showing diastasis of the normal architecture confirm the presence of a severe sprain and possible dislocation. Negative standard and weight-bearing radiographs do not rule out a mild (grade I) or moderate (grade II) sprain. Reevaluation may be necessary if pain and swelling continue for 10 days after the injury. Proper treatment of a mild to moderate Lisfranc injury improves the chance of successful healing and reduces the likelihood of complications. Patients with fractures and fracture-dislocations should be referred for surgical management.

The Lisfranc joint, or tarsometatarsal articulation of the foot, is named for Jacques Lisfranc (1790–1847), a field surgeon in Napoleon’s army. Lisfranc described an amputation performed through this joint because of gangrene that developed after an injury incurred when a soldier fell off a horse with his foot caught in the stirrup.1,2 The incidence of Lisfranc joint fracture–dislocations is one case per 55,000 persons each year.2,3 Thus, these injuries account for fewer than 1 percent of all fractures.2,3 As many as 20 percent of Lisfranc joint injuries are missed on initial anteroposterior and oblique radiographs.2–4

Lisfranc joint fracture–dislocations and sprains can be caused by high-energy forces in motor vehicle crashes, industrial accidents and falls from high places.1–3 Occasionally, these injuries result from a less stressful mechanism, such as a twisting fall. Since Lisfranc joint fracture–dislocations and sprains carry a high risk of chronic secondary disability,2 physicians should maintain a high index of suspicion for these injuries in patients with foot injuries characterized by marked swelling, tarsometatarsal joint tenderness and the inability to bear weight.” Lisfranc Injury of the Foot: A Commonly Missed Diagnosis (Para 1, 2, 3) http://www.aafp.org/afp/1998/0701/p118.html

CRPSRSD Awareness Twinkle V. @rsdcrpsfire - R Foot Nov 10, 15_1

Twinkle V. CRPS 2 November 10, 2015 DOI 1/26/2001

From misdiagnosed to a hell ride I’m still on, I’ve managed to find a glimpse of heaven in it all because I do work with me so that I’m not a total disappointment on myself or society. A bit over a week ago I was banned from Facebook. I had to provide documentation of proof of identity to return. I could have declined, but I was in a tight spot having a group there. Facebook’s policy is that everyone is to use the name they are known as offline, on Facebook, so that others know who they are. Sure we might say well if I’m known as this or that I should be able to use this or that. I hope people stay off me now. I’m me and I’m tired of having to prove it. We all know how many incognito accounts are on there. How many fake names, symbolism. People who have more than 3 accounts of various sorts. I have one account, I’ve never had another. Ever! I’ve always used my name. Once I was blocked, I had to verify me before being allowed full account privileges again. I was temporarily granted access back once I sent the document.

I’m Twinkle, I’m verified, (and proven myself yet again) and I hope that now that I have, who ever reported me, and each of you who want to refer to me as something different will either leave me be or respect that I haven’t ask you the same, or violated your privacy, or attempted to humiliate you, but instead realize that your actions have impacts.

Perhaps I should ask for your identification online and in person.

Between the diagnosis’ obstacles, I still manage to put in a few hours a month volunteering because it’s important that we find consistent tasks and daily agendas. When I’m not doing those things, I’m inclined to spend time in creative arts, things that have nothing to do with chats, Facebook, or social media until which time I might either post to share or keep to myself for another day. I love music and words and I love pieces and parts of all of it. I know the time is coming I won’t be able to stay up on my own anymore. Doze off all day long because you have the excessive daytime sleepiness and narcoleptic episodes, but you don’t sleep at night because you have the complex apnea, your brain doesn’t even send the signal for you to breathe, and your machine forces you to breathe all night long. None of which counts the numerous times you wake too because your spine has deteriorated, your legs are CRPS crazy, your arms fail you, and you just want to get comfortable. You have at least 10 + other diagnosis (internal and organ) and refuse to be beaten!

Each time the foot reaches the ground, pain isn’t just pain, you’re immediately in your head (coping), no reason to whine or complain. It certainly isn’t a reason to want to use pain medication, but it’s the very reason I know pain, understand it, and feel it for others beyond what I knew prior. It’s the very reason I do what I do. Remove the survival, you remove the very reason for living. Only so much can be done solo.

So when I say I did that first near 9 months of intense PT just to have “learned” to walk again? Truth! When I say I push through it each day? Truth! When I say intractable, forever? Truth! The Lis Franc screw remained for 6 months before removal and rehabilitation. My journey hadn’t even started yet at that point. Even in the still, you have to use your mind to bring it down. Every day is ongoing physical rehabilitation with cognitive assists.

The only chance I had was the one I gave myself.

I think I’m doing pretty darned good for doing so darned bad.

 

Mid Metatarsal Separation/Lis Franc Separation

http://orthopedics.about.com/cs/footproblems/a/lisfranc.htm

Lisfranc Injury of the Foot: A Commonly Missed Diagnosis

http://www.aafp.org/afp/1998/0701/p118.html

Lisfranc Injuries

http://www.foothealthfacts.org/footankleinfo/lisfranc_injuries.htm

Mirage

It’s unfortunate that as pain patients we have to play the game you want us to in order to be accepted into society. In the midst of the CDC’s Opioid Prescribing Guidelines that are being implemented and much of the commentary by various members of the medical community, PROP or anti opioid groups I’m left with a single phrase of truth. “I’m damned if I do and I’m damned if I don’t.” And so are you!
Pain patients should just push through it right? Okay! We should stop whining, quit complaining, cease everything you consider negative and survive it, right? Damned straight I’m right! But check it out! As soon as we do, to appease you, we’re well enough, we fabricated it, malingerers, and we’re a yxz with predominate pain as described in the ICD 10. We’re fine if we do and we’re lazy cry babies if we don’t. Oh and that pain we have? We’re just obsessed. Are you sure about that?
Comments are finally open-
Your voice is important
You finally have the opportunity to read what is included.
I’ll be sure to have my death certificate fought in any instance, including suicide.
Enough really is enough already!

Mirage

December212012byKharismaVanFleet

By Twinkle VanFleet

Montage,
Entourage

Applause,
Just a Mirage

Envision,
Collision, precision.

Missions

Decision, revision
Division, supervision

Manifested, suggested

Visions,
Acquisition, recondition

Provisions

Volition, superstition,
Intuition

Illusion
Delusion,
Fruition,

Why?
Solutions

It’s all a ..
Mirage
A smudge on the collage.

©2015 Twinkle VanFleet/Golden Rainbow Poetry/All rights reserved. Copyright Laws and Regulations of the United States http://www.copyright.gov/title17/

 

Twinkle V December 12, & 15 2015 #CRPS #StrongerThanPain

December 12 and December 15th. Still haven’t combed out them braids. 

The funny thing is that some of us fake it to make it, but really…
It’s just a mirage.

 

Creating a Better You | Barby Ingle

barbyingle.com

Barby Ingle barbyingle.com

I love it when people say, ‘you look so young’ and ‘I thought you were in your late twenties’. If a few people say it, it may just be a compliment, but for me, many say it. I believe age is an option. Yes, we gain a physical number on paper each year but when you look at your age, most think ‘how do I feel’. Age in this instance is a state of mind. I think people see me as younger than I am because I do look young on the outside, but I also have a playful personality. I know what I have lost, they don’t. Most in my life don’t know who I was, what I was capable of, how athletic I was. They know the person they see in front of them. I don’t drink, smoke or do drugs (that are not prescribed to me). So when people say, become a better you, what does that mean for those of us who are already trying to be the best we can be? For me it meant I wish someone would have told me about preparing for things that we may face or someone we love may face (chronic pain, disease, financial burdens, how to navigate the health system and life in general for that matter). I wish that I didn’t take life for granted when I was healthy. I had many experiences, most were great. I took them for granted until developing Reflex Sympathetic Dystrophy which stopped me in my tracks.  I met my primary care provider (PCP) in 2005. When we met I was in a wheelchair, bathed about once every 7-10 days, and had dystonia in my right hand, arm and foot. I had cut off most of my hair to make it easier on me. I am sure I looked a mess. He never commented to me on how I looked. He worked to get me feeling better he became the first on my ‘team’. He didn’t know what I used to look like. He was shocked to find out that I was a former model, pageant queen, cheerleader, and athlete. After receiving infusion therapy in 2009, I went to see him. I went from wheelchair to walking with him as my main health provider. I changed my hair, I changed my clothes. Two things I could have done before feeling better, but I didn’t put the effort in on most days. When he saw the new me, he asked my husband how it feels to be with a woman who is getting younger. It’s not that I was getting younger, it is my state of mind improved. Our beliefs and behaviors must shift when we are living with a chronic pain disease, no matter what stage we are in. This shift determines how we feel about our life and health. Often times I would psych myself out. I would say to myself, I can’t do this, I can’t do that. I learned through trial and error what my boundaries are. I kept a journal to learn about myself and I found that my bounds were far past where I thought in my mind. I found that I needed to celebrate each moment, each day. When things got tough and I had to spend days/weeks/months in bed I didn’t need to get down on myself or put stress on myself for what I wasn’t doing. I kept a journal and a made a bucket list during those times. As time has passed, I found ways to accomplish those tasks and come up with new ones. I found that completing tasks is easier, quicker, and more accessible when I live through motivation of starting where I want to end up. Putting it in writing and organizing a plan of action (that is adjustable) is how I began to accomplish my goals. I found personal incentive by manifesting something on the outside first. I changed my hair. It was a simple enough start. It led me to buying a few new outfits. I created a goal of doing more life experiences instead of gathering stuff to sit around me. I started with 4 outfits that are my ‘experience outfits’, and then came up with activities where I could use the outfits. Starting small on the outside helps to manifest how I feel on inside. Keeping track of where I have been and where I want to be showed me that I am of worth. Eventually my mind and insides caught up to my outward feeling. Was I perfect? No. Was I out of chronic pain? No.  But, I did learn to count my miracles. An experience can’t be taken away from you unless you let it go. Let go of the negative and focus on the positive; in your mind, heart and outside. Keep working on yourself and start with a few goals. Give yourself ‘what to do’s’ instead of just opposing all of the positive things you could have in life. Even in pain you can find ways to get the end of each goal. To change you, YOU have to practice. Am I saying you can just change your pain away? No way, not at all. I am saying you have the ability in you to change how you face your challenges. Find ways to recognize, understand, and consolidate challenges to see the goals you have set come to be. Don’t worry about timelines. If it takes a healthy person 4 years to graduate college, don’t feel bad if it takes you ten. It is okay. Remember, a win is a win. You don’t lose until you give up. Strive to understand the overall gist of your decisions and don’t let setbacks, others’ negativity, others’ guilt beat out your decision. You have the right to be the best YOU possible; star

Source: Creating a Better You | Barby Ingle

Power of Pain Foundation: Position Available: IPF Webinar Director

POPFLogoEmailThe Power of Pain Foundation is seeking a volunteer who can commit to approximately 5 hours per month to run our 2016 Webinar project. Some media background is required. Duties include but are not limited to contacting speakers, confirming dates and times. You would provide confirmation details to Executive Director Ken Taylor in a timely manner for promo purposes. Set up webinar page, and run webinar software during events. POP President, Barby Ingle will be serving as host. If she is unable to host, you, the Webinar Director will fill in. The title of your position is IPF Webinar Director.

If you’re interested, please send an introduction to:  twinkle@powerofpain.org

IPF Webinar Director in the subject line

 

~Twinkle VanFleet, Advocacy Director, powerofpain.org

Power of Pain Foundation: Seeking Content Contributors

The Power of Pain Foundation is seeking writers to produce original content for an original project. Both healthcare professionals and non-healthcare contributors are encouraged to apply. Space is limited.

If you write for this project, the article will be accredited to you, as the author. You would be giving Power of Pain Foundation permission to publish it in our upcoming magazine and use it in POP circulation materials. Our content contributor articles are being reviewed by multiple medical professionals for accuracy and fairness prior to publication. These reviews may include edits. You still retain author rights other than the permissions granted to publish and distribute without compensation from the Power of Pain Foundation in conjunction with this project.

You will need to review, sign and return a non-disclosure agreement prior to receiving your assignment.

If you’re a writer, blogger, or contributor with another organization or facility there is no conflict unless you create one by disclosing information and confidentiality protected by the agreement.

To be more precise, you may not use, discuss or write about your assignment during the project’s development. You need to be able to produce original work and be able to submit on a deadline.

If you’re interested, we would love to hear from you.

Thank you!

Please email:  twinkle@powerofpain.org

Magazine in the subject line.

Deadline to apply December 16, 2015 unless otherwise updated.