Twinkle VanFleet

Kharisma’s Journey

Posted by

5

KurtisandKharismaUCDavisMedCenterJan272015 On January 23, my oldest daughter Kharisma was in the ER again with severe stomach and back pain. The next day she was admitted.  She came home after 8 days of repeat CT scans, MRI, medication management and ending with a Celiac Plexus block.  In August she spent a week there also. A biopsy led the team to believe she had Epithelioid Hemangioendothelioma (EHE).  While the biopsy turned out to be inconclusive, we were led to believe that the several lesions on her liver were benign. During this stay, we learned they just don’t know yet.  She has to have continuous follow ups with dynamic MRI to follow the course of any growth and re uptake in any cell progression. Because EHE is so rare and only first discovered in 1982 no one knows what to do but watch it. I had 2 doctors be most honest with me and I do appreciate them, but I am not certain I would have gotten that conversation if a situation had not happened the day before. From that point on, a relationship was formed with one of the specialists who also cared very much for my daughter.

DeMantaiandKharismaUCDavisMedCenterJan252015We were told that they couldn’t go in and remove the lesions because there are too many and she wouldn’t have a liver left after dissection. We were also personally told that she may need a liver transplant. Some physicians will form a relationship with you, other’s will not. Then other’s will stay in the middle, set compassion to the side, withhold answers, or give few. Sometimes because they don’t have any, or because they don’t have enough. They aren’t intentionally out to hurt us. They don’t have a magic ball and they don’t have super powers. Every situation is different.

Where does that leave us? Where does that leave my daughter? It doesn’t! It leaves us with uncertainty. It’s easy for everyone to say put all your fears in the hands of God! Let God take over.  And no I haven’t lost my faith, and oh yes I’ve already prayed over this and asked forgiveness, but God isn’t going to get my girl to her doctor appointments, he’s not the one to keep up with all the phone calls or pick up the phone to return them, he’s not going to keep her from hurting but meditating on his hope might. Faith keeps us strong to achieve those goals. He would want each person involved from medical to us to self to do the best they could.

KurtisandKharismaUCDavisMedCenterJan252015

Then right back to the same thing. She has to have a referral from her primary to get to the new specialist. That’s just the way the process works. Insurance rules. There’s nothing I can do to jump that hurdle for her or make anything move faster.  I am a mama feeling helpless. I asked 2 of the team in the presence of my husband Erik, my son Kurtis and with Kharisma when will it be too late to intervene with Chemo, Radiation, other? When?! When is it going to be too late? They did not know, but were honest.  The only 2 doctors that gave that much. And I suppose with my next statement anyone can call me paranoid or over thinking it, but I have wondered if my girl isn’t being monitored to learn from this rarity.  Without people to learn and study from there would be no progression in medicine.

Kurtis stayed with his sister each day, came home late, went to work first thing in the morning and back to his sister. We went to see her at the same time each day between 2 and 3 pm. Her sister Rikki took her cupcakes. We took our daughter’s son up to her, our blessing of a grandson De’Mantai Xayvier, as did Kelly who is also grandma to ‘Tai. When you are forced to have conversations with your children that you don’t want to have because of the unknown but you have to because you don’t know.

TwinkleandKharismaUCDavisMedCenterJan2015

There’s not a lot more to share at this time.  She is returning to work today for as long as she can manage.  She starts PM soon as well. She’s a department manager where she works and has taken pride in that as she should.  We have to stay on it and on top of it. All of it.

Official diagnosis at discharge Hepatic Hemangioendothelioma

Diagnosis in Electronic Medical Record of this hospitalization Hepatic Epithelioid Hemangioendothelioma dated January 27, 2015

TwinkleandKharismaUCDavisMedCenterJan2015_1

I am so very proud of you Kharisma Anna Magdelena! Not only for being a wonderful mom whose son has been an honor student 8 times over, but as a daughter. There is not a single thing you have ever done that we haven’t been able to laugh about later, together! Even as a family! And same for me in the reverse sense. There isn’t a single squabble we couldn’t ever talk about and let roll. That means I gave you something so amazing and you gave me something back just as amazing. The ability to forgive and let go unconditionally. Without holding grudges, without animosity, never giving and withholding love.

I love you so very much!  I’m truly blessed to be your mama.

Dream big it’s never over.

To be continued-

Info

http://sarcomahelp.org/research/epithelioid-hemangioendothelioma.html

http://radiopaedia.org/articles/hepatic-epithelioid-hemangioendothelioma-1

http://www.diagnosticpathology.org/content/9/1/131

Work Comp, Denials, Delays and Dangerous Outcomes

Posted by

2

Just last evening I got back on the medication that should have been filled January 4th, 2015.  On January 9th, I received a modification approval through PRIUM quoting reasons for denial using the California MTUS.  Two of the medications were available for pick up on Monday January 19th. One was a modification and reduction of Duloxetine, the other an Anti-Seizure.  Both of these medications warn that patients should not abruptly stop them. Cymbalta/Duloxetine withdrawal was so bad that I couldn’t see straight, literally. I saw lights flashing before my eyes, instability, rapid heart rate, a rise and fall in blood pressure and I heard sounds in my ears, head? I felt as if I was dissociating from myself. Bouncing in and out of my entire being. I only take one actual pain medication. On the 4th when they all should have been filled. I was still okay there. On the 8th, I had a Lumbar Sympathetic Block that seemingly failed due to the Duloxetine withdrawal state I was already in. I was already off the Anti Seizure as well. I removed my patch on time 3 days later. I knew I was heading into another withdrawal. This medication was approved on the 9th also. It is a partial agonist and partial antagonist.  It was still not made available to me. None of them were. 2 of the medications will not be filled at all, anymore. At this time I am coming off another that helped me greatly over the years, but which I will no longer get.  In addition Lidoderm will no longer be approved. It has not been easy.  Last night my patch, the lowest dose of its type was finally put back on.

I know what Lidoderm was originally classified for, yet it seems a little odd to take away a patch that eases nerve pain in targeted areas. Especially when the indications for Shingles is post use and not during break out.

Cost, I am sure!

What is important to point out here is that if the insurance or adjuster has an idea that medication will not be filled for any reason notify the patient or provider before hand.  Give opportunity to properly reduce to avoid side effects. I could have seized! I may have and just don’t know it. Nausea, vomiting, dehydration from not being able to keep liquid or food in was also most unpleasant.  Edema, myoclonic jerks were in an uproar. I had respiratory depression and ended up with flu and cold like symptoms which still exist. I couldn’t lay down and I couldn’t use my Auto Servo Ventilator during the worse of it because of its unique ability to force me to breathe. I coughed uncontrollably. My chest is still heavy.

I do not mean to place myself in another category than other’s on Worker’s Compensation. However, my claim is closed with lifetime medical. My rating above 70 percent was issued in 2008. So how do you determine who is entitled to what and when? Or are none of us entitled at all? New claims, old claims, open claims? We seem to be at the mercy of someone who holds our lives in their hands. I seriously want to learn more! I would appreciate honest answers, but I don’t expect a single one.

We should not have to go through this because someone somewhere is sloppy in their own duties. So what do we do? What are all the patients who are being effected by similar issues suppose to do? Every time I’m denied for a procedure it’s overturned and approved by a medical professional. Why is all the money spent to deny and delay instead of treat in the first place? You speak of high cost in the Work Comp System, oh yes, I agree! While our awards are sitting in an investment account, paid out in bi weekly portions, you get the interest we never see. And then some of you show us your new multi-million dollar buildings and all we want is access to care.  If I had gone to the hospital it would have been initially assumed I was an addict drug seeking. I already know this because this is the position many of you have placed us in.  An immediate assumption, no presumption, no fact or basis for the pre judgement.

Discontinuation of Treatment with Cymbalta

Discontinuation symptoms have been systematically evaluated in patients taking Cymbalta. Following abrupt or tapered discontinuation in adult placebo-controlled clinical trials, the following symptoms occurred at 1% or greater and at a significantly higher rate in Cymbalta-treated patients compared to those discontinuing from placebo: dizziness, headache, nausea, diarrhea, paresthesia, irritability, vomiting, insomnia, anxiety, hyperhidrosis, and fatigue.

During marketing of other SSRIs and SNRIs (serotonin and norepinephrine reuptake inhibitors), there have been spontaneous reports of adverse events occurring upon discontinuation of these drugs, particularly when abrupt, including the following: dysphoric mood, irritability, agitation, dizziness, sensory disturbances (e.g., paresthesias such as electric shock sensations), anxiety, confusion, headache, lethargy, emotional lability, insomnia, hypomania, tinnitus, and seizures. Although these events are generally self-limiting, some have been reported to be severe.

Patients should be monitored for these symptoms when discontinuing treatment with Cymbalta. A gradual reduction in the dose rather than abrupt cessation is recommended whenever possible. If intolerable symptoms occur following a decrease in the dose or upon discontinuation of treatment, then resuming the previously prescribed dose may be considered. Subsequently, the physician may continue decreasing the dose but at a more gradual rate [see Dosage and Administration (2.7)].  Indications and Usage for Cymbalta ~Drugs.com

What is also interesting is that while both my provider and I was told by my Pharmacist that my Rx’s were put into the inactive file and that there was nothing they could do, when the first 2 were picked up on the 19th, the info on the bottles are back dated to the 15th and 16th. That’s wrong! That is not when they were filled. I have kept the receipt/dated of when they were picked up.

I will not name the Pharmacy as I have always had a great relationship with them. So while I continue to withdrawal from one medication, and try to re stabilize from those that had been removed, modified, approved and denied, I can’t help but wonder when the solution is coming to fix a broken system that doesn’t only affect me but millions of injured workers through the States.

As the prescription drug epidemic continues to fuel, let me also mention that slam dunking people off medication has them consider alternatives they would have never considered before.

You make some people become the person they never were. Before you jump to conclusions I beat this! I am beating it! I did not turn to alcohol, I didn’t seek out pills, I did not do what you could have pushed me into.  Suicide increases more and more each day and will become the next epidemic. No one cares to see that part. No one cares to listen enough. Even those that reach out are left hopeless. This isn’t just about Work Comp it’s about access to care in the chronically ill intractable pain patient.  If treatment was offered early, progression of injuries, disease and pain could be controlled instead of becoming out of hand.  Some people with diagnosis’ like mine would even have the chance at remission! Wouldn’t that save billions of dollars?

So I have to wonder if anyone really wants to change anything at all.

We’re not victims, I play an active role in my own pain care. My physicians are just another tool in my tool box of modalities, spirituality and assistance to help me survive and have some semblance of life.

So what do we do, and how do we do it?

I’m all ears.

 

~Twinkle VanFleet,

Advocacy,  Power of Pain Foundation

 

 

 

Heading back to yesterday

Posted by

0

So many of us get so lost in the loss of our lives before our diagnosis’ that we fail to realize we never did lose ourselves entirely. We only tucked it away.  For me, I have no formal college diploma’s, I never finished college the first time because I married as a teenager. I began college at 15 studying law and theater after I left my favorite high school. I went to 4. My favorite was the second in La Verne CA . I graduated from professional acting school when my daughter’s were little, but I left that career behind to advocate for end of life, specifically my dad. I had a small business Publishing  company when I was in my mid 20’s while still working full-time for someone else. I’ve been writing since I was 8, published many times in hard print compilations and anthologies. My piece for 911 (September 11, 2001) was published in audio along with others. It was both a hard print and audio special edition. I wrote for the Independent Opinion on various topics years ago. I wrote my book years ago as well. I’ve kept that and it’s title to myself. I had left it to my children to have published someday. It is uniquely written and different from most. Last year, I was encouraged to go forth with it. I am not sure yet. It’s more important for me to leave something behind.  That’s why I left it to my kids in the first place.

All of my education comes from amazing mentors, research, avid reading, documentaries, sources and resources of knowledge that has inspired and educated me. I crave knowledge.

I write poetry, poetic rap, spoken word, quotes, a few essays were politically driven, many health related. Now that I have re connected with one of my publishers from over a decade ago, I realize that I never lost all of me at all. I only set me aside. I set the best of me aside.

I had a publishing site established in 1997 where I helped assist other’s get published. I published those unknowns so that their work could be found by other publishers. I loved doing that. In much the same way I love doing what I do now in advocating. I serve! Included also was my own work. I lost that site in 2007-8 along with many of my pieces. I was so proud of it. It was entirely hand coded, no templates, no programs. Straight html and self-taught. In 2005, I started school for a Corporate Publishing degree. I had to take pause to have my Spinal Cord Stimulator implanted in 2006. I did return, but I have not received my degree. I did however complete my prerequisite courses which gave me a certificate in those classes. My RSD(S)CRPS site overlapped with my GRPC site for a few years. I had them both. Because much of my work has been published online, I’ve been able to retrieve some of what was lost. I’m still looking for the others. I also have in the garage a notebook of all original work that goes back to my childhood which I haven’t even taken a peek in probably 25 years or more. This blog is about to approach its 9th birthday. For a few years it was a set it and forget it with pages of information yet not many actual blog posts.

I’m heading back to my yesterday which brings me joy and have decided that I have more to proffer in what I was then than what I am doing now. I’m trying to keep both. I am not able to choose at this time. So for now I will re-establish my yesterday and move forward in both passions and purposes.

“Look, if you had one shot, or one opportunity
To seize everything you ever wanted. one moment
Would you capture it or just let it slip?”~Eminem- Lose Yourself

I’m going to capture it!.  And with whatever controversy it brings me. I’m good with it. No one knows my back story, only glimpses of it.

As soon as I’m able, I’ll add my writing’s here. Just going to decide in what manner I’ll post them.  All at once (in the same post)  or individually.

I’m deeply philosophical, I tend to provoke thought. I am an empathetic and sensitive. I prefer my circles small due to this. I can’t see one side, or two sides, I often see 3 sides to issues and people. I don’t care to form many close relationships because of my ability to “see and feel” what is not mine to know. Unfortunately there are times I “see and feel” too much and have to step back a little. I am gifted to have an overwhelming capability in understanding. I can forgive easily. I try to help people let go of the most painful emotion of all, guilt.

I love to make people laugh even at the expense of myself.

Until next time,

I wish you all pain eased days and nights

Always be as well as you can be

I know you’re still in there somewhere, find you!

 

“I could just dance forever… and ever…
… And submit to every ounce of surging pain that wraps its arms around me” ©2007-2015 Twinkle VanFleet

 

twinklev_onlygodcanjudgeme

 

 

 

Trinity (Mama Lived)

Posted by

2

Trinity (Mama lived)

by Twinkle VanFleet

3 years old
Sitting on the officer’s lap
Daddy wasn’t there,
The memory still impairs.
Dying,
Little girl wandering
No one around,
Baby girl pondering
Someone come home.
(Trinity)
Where’s mama?
Pained, bruised, all messed up
Tried to take herself out,
Didn’t know what it was all about.
Took little daughter into her arms
I love you, Mama said before she went
Little girl remembers before the decent
Flat line, just in time
To come back to it all again,
Hard life, battered wife
Just couldn’t know it then.
(Trinity)
21 gun salute
Young woman watched the ammo fly through the air,
Picked up a shell, couldn’t really bear
Daddy went to heaven, mama left the state
Fate would be sealed,
All those years ago
Would lose them both, never would heal.
Flash backs, no take backs
Destiny became the remedy,
Mama got a new life
She’s a good wife.
(Trinity)
Big girl now,
Never had to forgive it
By the trinity that gives
Blessed to know and feel it
Ma ma my mama lives
©2015 Twinkle VanFleet  All Rights Reserved. Copyright Laws and Regulations of the United States http://www.copyright.gov/title17/
I-love-You-Saying-Images-and-Wallpapers-26

 

Prescription drug abuse versus chronic pain care

Posted by

0

RSD(S)CRPSAdvisoryLogoPrescription drug abuse versus chronic pain care continues to be a hot topic.  In a previous post How should U.S. regulate powerful pain killers? American Academy of Pain Management’s Executive Director, Bob Twillman, PhD discusses opioid prescribing and regulations with Dr. Andrew Kolodny, Director of Physicians for Responsible Opioid Prescribing on PBS’s Newshour.  Dr. Kolodny acknowledges Chronic Pain is a serious problem. He adds “But, unfortunately, we are harming far more people with chronic pain than we’re helping when we treat them with long-term opioid medications”.

He doesn’t believe long term use of opioids should be prescribed to those with low back pain, Fibromyalgia and chronic headaches.  He goes on to discuss what many of us believe in that there is a separate population in the drug abuse epidemic and chronic pain person.

I do believe there is an overlap in some patients. I do not believe all patients should be classified in the overlap scenario. I do know that opioid induced hyperalgesia can occur from long term use, but usually when the medication is increased for not controlling pain. I also know people who have experienced it who have taken it as prescribed long term.

Harming which ones? All of them? Some of us? One or two? Consider another possible epidemic by the refusal, discontinuation, denials, and/or delays of needed medication, suicide. Patients are becoming pre disposed to emotions and actions they would have never felt or done otherwise.

Lee_OpioidInducedHyperalgesia

Sadly, many overdoses are from abusing, mixing with alcohol, illicit street drugs, changing the Rx and simply not thinking. No one wants to be accountable instead just bounce the blame.

In a recent publication, The Unintended Side Effects of Fighting Prescription Drug Abuse, an op-ed piece published January 8th, 2015 on the California Progress Report, I shared a bit of me and spoke on the importance and options of Abuse Deterrent Formulations (ADF) while also showing that there are some people whose quality of life depends on an opioid medication.

It seems my article has come under some scrutiny by opposer’s of opioid prescribing.  I am heading into my 15 year with the diagnosis of CRPS /Causalgia type 2 with confirmed nerve damage. Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy are other names. A neurological, neuropathic autoimmune disease which causes a malfunction in the Sympathetic Nervous System commonly known as Fight or Flight. Now referred to as Fight, Flight,or Freeze)  (1 of 2 parts of the Autonomic Nervous System), Autonomic Nervous System ANS (Sympathetic SNS and Para-Sympathetic PNS). All of which reside within the Central Nervous System CNS. RSD/CRPS described by the National Institute of Neurological Disorders and Stroke in 2001 and also at the National Institute of Neurological Disorders and Stroke we know more. While it’s rated 42/50 on the McGill pain index, I use all the additional tools I’ve learned over the years. Meditation, bio feedback, deep breathing, imagery, guided imagery, distraction, pacing activities, relaxation techniques, progressive muscle relaxation audios, hearts house and various other modalities to help ease my own pain.

mcgill-pain-index-with-academic-citations

 

I’ve had a Permanent Spinal Cord Stimulator implant since 2006.  I am on one low dose narcotic.  The lowest dose for it’s type.  My other medications do not apply.

I’ve been a part of the California Medical Board’s Prescribing Task Force in Sacramento California since it was formed.  I do not advocate for or endorse any opioid analgesic.  I gave testimony for Senate Public Safety on SB 1258 (DeSaulnier) April 29, 2014.

I agree there is a problem.  I appreciate the passion in those who are advocating for change in over prescribing, abuse, misuse and diversion. I too have the same goal, but not an agenda at the risk of cutting patients off medication. Try to appreciate my passion in the fact that many chronic pain patients are being depraved proper pain care due to the “epidemic”.  One second I hear certain Workers Compensation posters complain about Lidoderm being prescribed to pain patients stating that it’s intent is for Shingles. True, but let me clear something up for that poster, “Post Shingle Pain”. One cannot use it during and until any open wounds or blistering heals. LIDODERM® (lidocaine patch 5%) is used to relieve the pain of post-herpetic neuralgia, also referred to as after-shingles pain. Apply only to intact skin with no blisters.

Lidoderm, seriously? Weren’t we just talking about opioids? The reason I mentioned this is because the same page that complained.. also complained about opiods with the WC treated patient.

Tell me what you want, what you really really want! In other words, a narcotic or a lidoderm patch. Hm…    sheesh.

I agree that patients should be assessed accordingly. Patient Evaluation and Risk Stratification should be utilized to mitigate potential risks. I’ve been with the same doctor since 2004, I use the same pharmacy.  I’m randomly drug tested for my prescription medications and for those not prescribed, illegal ones.

The overlap is partial.  Drug abuse and pain care do not overlap entirely. There is a difference between dependency and addiction.

Dependency, (Psychol) over reliance by a person on another person or on a drug,

Addiction, the state of being enslaved to a habit or practice or to something that is psychologically or physically habit-forming, as narcotics, to such an extent that its cessation causes severe trauma. The condition of being abnormally dependent on some habit, esp compulsive dependency on narcotic drugs. Habitual psychological and physiological dependence on a substance or practice beyond one’s voluntary control. A physical or psychological need for a habit-forming substance, such as a drug or alcohol. In physical addiction, the body adapts to the substance being used and gradually requires increased amounts to reproduce the effects originally produced by smaller doses.

Addiction is when you want and crave the drug so bad your body has to have it, some will lie, steal and search until they get their fix.

I’ll use myself as an example, dependent, yes. I rely on it to ease pain that is often so unbearable most of you would have no idea.  Unrelenting, constant… all day, all night.

So lets take a look

TwinkleV_RFoot_Feb222007

The above photo is 6 years after the injury that led to my diagnosis.  Can you possibly imagine walking on that? This photo includes swelling, blood vessel constriction, discoloration and the burning pain while internal became exterior to the point of simulating actual burns. I cycle through my symptoms which include burning, ice fire, discoloration, temperature changes to the extremity, hair and nail changes, sensory and motor difficulties, atrophy is apparent when swelling has eased.  These cycles occur daily. I’m sensitive to loud sounds, my skin is hyper sensitive. Clothing hurts. I’m unable to drive and have to rely on 3 people to get me anywhere. Allodynia and hyperalgesia are present. Bones have wasted away in addition to muscle. You can feel it. Increases in barometric pressure causes flare-ups. Now imagine that throughout your body.  Several secondary diagnosis’ that I will not discuss at this time.

TwinkleV_JPDrain2012 TwinkleV_RFoot_Feb222007+1 TwinkleV_RFootAatrophicCRPS TwinkleV_RFootAtrophicCRPS TwinkleV_RFootAtrophyCRPS TwinkleV_RFootCRPS

 

 

 

These photos include atrophy when swelling reduces to bone. Try putting a shoe on that or trying to be a productive member of society. Chronic pain patients already have a negative stigma of being whiners, complainer’s and drug seekers.  None of what I’ve written includes the back pain caused by the same injury, or the hard landing of my head on concrete flooring. I won’t even go into secondary depression due to the loss.  Lose what you wonder? All that you might have been! I volunteer 1-4 hours a week. That’s what my life is. We are all different.

Taking medication as prescribed, not sooner, not later, not double dipping makes up half the difference here.

For more information visit- The Neuropathy Action Foundation

Current photos. Left 3 weeks old. The right 5 weeks.

 

 

TwinkleV_RightFootRightHandDec192014

TwinkleV_RightHandNov292014a

 

 

 

 

 

 

 

 

 

 

We should be working together to bring a sound solution to this ongoing topic while keeping in mind,.. It really hurts to hurt!  Ask yourselves this, what if we were you. What if you were one of us?!

First it was the patients abusing the drugs, now it’s the physician’s fault for prescribing them. I can’t wait to find out whose fault it is next.

 

TwinkleV_ASV_Dec2014

 

Would you trade places with me?

Nope, you’d most likely beg for pain relief in the form of an opioid.

So let’s be easy on each other.

I wish you pain eased days and nights,

Twinkle VanFleet, Advocacy Director/Board Member Power of Pain Foundation

 

 

 

Back From Leave- Update

Posted by

0

doing-it-in-gods-strengthCame back from leave about a week ago. Trying to get back to my volunteer related activities and other endeavors. I don’t know how often I will be on and won’t be available for all things. Living with Narcolepsy on top CRPS and the rest isn’t easy either and I don’t take medication to wake me up, so I do the best I can with that. It’s extremely hard to have so much going on and it seem so unreal to outsiders looking in, listening, reading my posts. I wake up at times and it’s takes me a few minutes to realize it’s not a bad dream, but soon enough I know it’s the ongoing reality. As some of you know, I’ve been sharing some of my daughter Kharisma’s story under blog posts “Taking a Break” and a little on FB. I just haven’t yet given any specifics. When she seen the Specialist yesterday, we were left confused. He stated he believed the hospital assumed the previous diagnosis due to the size and placement of the lesions on her liver, especially the largest which is resting at the side of the liver wall. He seems like a good doctor.  I’m glad he’s reviewing instead of jumping right into invasive pokes.  I will go ahead and reveal the first believed to be diagnosis now as he thinks it may be another type of cancer instead. The first was Epithelioid Hemangioendothelioma. I had a hard time with it.

For more information,

Towards a Proper Diagnosis and Understanding of the Pathogenesis of Epithelioid Hemangioendothelioma

Now he is reviewing her Biopsies, MRI, CT, Blood tests, X-ray’s and all records before ordering the repeat Biopsies. Now he thinks she may have Colon Cancer. What, how? I research everything I can get my hands on. While people can have Colon Cancer and not even know it and even perhaps have no symptoms, she doesn’t have any symptoms of Colon issues. Only the pain. Pain I know because of my  own liver issues and removal of lesions with my second Gall Bladder surgery just 15 months ago. We’re still left without definite answers so treatment is still in the future. Many more appointments. She’s 26, our oldest and the mother of our 8 year old Grandson.

2 days after the injury to my right hand our 17 years old son Kurtis finally had his appointment at Shriners Children Hospital in Sacramento. We learned that his Degenerative Disk Disease was not the results of his brain injuries when he was 15 and diagnosed with DDD at 15, but instead Congenital Defects of the Spine. He was born with Spinal Stenosis and Spondylosis. We’ve known for 2 years that his 2 of his disks have thinned greatly and now we know they’ve (L2 and L4) deteriorated further with Neuropathy and that he also has a tear at S1.  Yep, my heart broke again. He’s a 4th year Sheriffs Volunteer. Many awards. Even from Senator Steinberg and the California Legislature.

All I could do what tell him/post to him –

“Kurtis, You never knew you were born with it,

Go on like you still don’t. ~Mama”

I was born with Arthritis, too. I went on through life as if it wasn’t apart of me. I’m not saying it didn’t hurt, but the more you dwell on pain, aches, what you can do, might do, or have to rest from the more you give up on life.

I didn’t. I still played 8 years of softball and made sure that when I began working it was on my feet. Moving. All Kurtis needs to do right now is protect his back and spine by moving it or losing it. There are no options for surgery at this time and he will not be placed on any pain medication.  He is strong and he has goals for the future.

Kharisma, while going through all this has been promoted at work and is seeming doing well.  It’s always ‘seemingly” isn’t it?. We are fighters! We just hide most of it that’s how we go on. Emotions.

And then there’s Erykah, our daughter who is getting ready for her and her other half to move into their first home next week. A beautiful home. How can I not feel bad for her, I know she’s pained too, getting lost in all the medical health chaos of her family. She was our Army girl.

The human body when it reaches a certain point in pain will pass out, shut down, the human psyche will either hold on, break, come back, attempt, or kill itself.  It’s emotions that take control of the mind.  It really hurts to hurt. None of the above includes my husband, or myself. Not really. Not any of his medical appointments, PT, etc. And me, I’ve put mine on hold, I had to, my 5 lights will always come first.

So here we are the ride isn’t over, there’s still another story I haven’t shared yet, not in its entirety. When I do, I want it to help others. It may be later down the line.

That injury I sustained was without a single pain pill. I’m not saying it didn’t hurt or it isn’t hurting, I’m just saying (for me) I didn’t have to go there. #StrongerThanPain I still haven’t and on the 15th it will be a month. Vitamin C, Ibuprofen, deep breathing, meditation, focal points and going to my happy place in my mind where there is no emotional pain. Where there are no mis diagnosis’, and delayed help. Those lesions were found on my daughters liver 16 months ago, but she was dismissed due to no insurance (assumed). Or maybe just because it didn’t seem important enough at the time. My happy place where we’re all camping at Rumsey in Yolo County. Our spot for several years.

Change the direction of your mindset and you change the direction of your pain.  ~T

 

 

 

 

 

Faces of Pain Video 6 Presented by the Power of Pain Foundation (English and Spanish)

Posted by

0

POPFNewNationalThe Power of Pain Foundation presents Faces of Pain 2014. The video features neuropathic information in both English and Spanish.

Faces of Pain 6th edition for Power of Pain Foundation

Thank you to everyone who participated in this video. Without you it would not have been possible. Thank you Jane Gonzales for writing the beautiful song, My Only Consolation.

Thank you Vanessa Lara-VanFleet, California Representative POPF for the translations. You did amazing as I knew you would.

Thank you Kurtis VanFleet National Youth Ambassador POPF for the unique Photo’s. One taken in West Sacramento, the other in Sacramento CA.

Thank you Barby Ingle, Ken Taylor.

Together we can! And we do!

Power of Pain Foundation is a National 501(C)(3) Nonprofit charity serving the pain citizens of America through education, awareness, social events, and access to care services.

 

 

Nobody Knew

Posted by

0

Nobody knew that my first and only grandson may have been the second miracle of my life. My daughters Kharisma and Erykah have never had what most pre teens, teenagers or women have. A normal menstrual cycle. Many of us lack normalcy, but my daughter’s have but 1 or 2 a year. So if you believe in a God above, you must believe that De’Mantai Xayvier as a blessing. While it’s been mentioned by my oldest daughter, his mother, Kharisma Anna Magdelena many times, she was 17 when he was born. She calls herself a single  Mama, but ‘Tai’s Daddy is good, too. Some have taken and some have given to him, I give because I feel and when someone feels, they know.

I’ve never been regular in my life and I will never know if it played a factor in losing my twins, one which was ectopic, the other which resided in my uterus, and both of which were removed from me at the same time without notice. I was that close to not making it. It wasn’t the first time in my life I was close to heaven. The first was upon my own birth, prior, the loss of my own twin.

It’s easy to make jokes, God didn’t want there to be two of me.

I know my 2 have a Mama there .. they still have me!

After the loss of my own twins and the Exploratory Laporatomy that still teaches new doctors today, I was reminded for years by the scar that begins at the left side of my belly and ends at the right. The incision that broke open, high, diagonally. , ugly, just a terrible reminder.  As I began to try to let it go, mostly for the one I wasn’t given a chance to save, the one inside my uterus, I prayed for ease.

I was told I was never able to have anymore children. I was 24. It was 1991. I had 2 beautiful baby girls. And babies they still were. If my twins had survived I would have had 4 babies in 4 years. It was a blessing some said. God made your choice for you! What choice?

No more babies for me!

The years went on, we worked so hard to give our girls all that we could. They had the doll houses, the park benches, washers and dryers, kitchen sets, Teddy Ruxpin (We still have him), neo pets, easy bake oven, so much.

When our girls were 8 and 9, I wasn’t feeling all that hot. I was always hot. Spiritual fire, fire and light, inspired, a life of service, for the people, always for the people, one way or the other. I made my life career in West Sacramento, CA.

I was pregnant! 1996. They said I couldn’t have it. So content. I knew he would be mine! And he was! Just like my daughters … mine!

That cord wrapped around his neck, body, as I attempted to deliver him. I could see signs on my husbands face, I pretended they weren’t there, my doctor, so calm, saved me and Kurtis, as he spun him so very fast as his 8 pound 4 ounce body exited me…

I’m so proud of all my babies. Kharisma, Erykah, Kurtis and De’Mantai…

And while I am waiting for grand babies, I know I might only be blessed with his choice again…

I’m ready!

I also understand ‘Tai may be our only..

My blood will still survive me.

 

 

The Communities in which we strive for

Posted by

0

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

Stepping Up and Stepping Out with POPF (Power of Pain Foundation)

Posted by

0

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.