My Week in Review- June 28, 2015 – July 4, 2015

Posted by twinklev

My week in review June 28, 2015 – July 4, 2015

I’ve been excited waiting for my mom to get here from Georgia. I’ve only seen her a few times in the last 18 years. When my son was little and a few years after the injury that led to my CRPS, we got on a Greyhound bus and traveled 2 and half days to Columbus Georgia and then back again 2 weeks later. Kurtis was only 3 when I was first injured, so he learned right away how to be a caregiver. We had a back pack full of snacks and little drinks for the trip so that walking during layover’s wouldn’t be difficult. Some people feel that leashes are cruel, but in fact I was leashed to Kurtis. We were connected to each other by a clip at the waist of our belt loops. We each wore identification around our necks with where we came from and where we were heading to. Mine included medical information. The Lis Franc screw in my right foot had already been removed and I had already done the nearly 9 months of intense physical therapy just to be able to walk again.

Kurtis use to tell me and was the one to tell me when I took my first solo step, “Just one more step mama, just one more step”. The words of a 4 year old. I think he was 5 when we were off to Georgia. “Together, we can” and we did! His quote that’s made it around the web for over 10 years “I fight, you fight, we fight together” was from him to me and me to him as it was he and I together during that time when I couldn’t weight bare at all. My husband worked 10’s so was away 12 hours a day, transportation time included and our girls full time in school.

I saw my mom again in 2008 when our daughter Rikki graduated from boot camp and AIT in the Army. Mom wasn’t far from where our daughter was, so we all met up. It was a great reunion and a super proud day as parents. My girls and I flew out a few years back, but Kharisma and I were only able to stay 3 days. This time my mom, step dad and sister niece are driving here. Will have about 4 days with them. I call Rosie my sister niece because she is my niece, but my parents have raised her since she was a baby. That makes her my sister, too.

Earlier this week one of my children became a coroner’s assistant working for the State. Crime scenes, retrieval of the decreased, and transport. Another of my children took oath to defend the Constitution of the United States and the State of California. For my oldest child we are still working on moving forward with her care. She is still working.

I was finally able to start updating my website. I imagine it will still take me sometime to get it back in order. It is one of the oldest CRPS/RSD sites on the web beneath the RSDSA, the RSDHope and a couple of others. Working on other projects, too.

I had my ultrasound on Monday. My doctor phoned with results late Tuesday morning. Repeat in 7 weeks due to one of the cysts doubling in size. It’s a little under 2 inches now. The ultrasound caused a side effect, by no means her fault, just part of the issue at hand, so I’ve been dealing with that again.

My husband surgery was rescheduled and is now the 10th of July. Ironically, the same day my mom will be here. Hopefully we will be back home from the hospital early that day and all is successful for him. It is outpatient at this point.

And finally we are going to our daughter’s this evening for a little BBQ for the 4th.

Overcoming the Stress Response

Posted by twinklev

The Sympathetic Nervous System is derived of 2 components. The Sympathetic Nervous System (SNS) and the Para-Sympathetic Nervous System (PSNS) both of which makes up the Autonomic Nervous System. The Sympathetic Nervous System is also known as Fight, Flight or Freeze. Stress and the Brain can be a serious issue for many individuals. Related or unrelated to various diagnosis’. Over the years I have lisened to thousands of individuals with a multitude of diagnoses.

Most of which touch on the the Stress Response. The stress response is “The Sympathetic Nervous System”. The Sympathetic Nervous System is the Stress Response. It is Fight, Flight or Freeze.

Having Complex Regional Pain Syndrome Type 2/Causalgia, I’ve had to take pause for an extra peek. Was there something there in my life at the time to cause my body to take this abnormal path. Has the stress and idea of not being able to heal kept me in this abnormal pattern. For me and only me, I cannot dismiss it. I cannot seem to find anything solid, but our minds don’t always work that way conclusively.

I refuse to give up, yet I fall to my own victimization in that I, at times, give up. It doesn’t matter if it is for 5 minutes or for a day. I have the awareness to know that by giving in, am I somehow reconditioning that stress response. I think it is possible. I use many of the alternative techniques available to me on a regular basis. That is how I survive. I also know that I succumb to fears of the future. Fear is anxiety. Anxiety is fear. Fear and anxiety is stress. Add stress to chronic pain and you, or I, will always have a vicious cycle to endure.

Rarely do I focus on the physical decline of my being, I am aware. If I did, I would continue to re trigger the same event each and every day. I don’t focus on the look, or what I see. I do have trouble with the fact I can’t get out on my own. I have been trying to clear the secondary issue of depression. Many of us believe we are reasonably well. That is what we represent. My family fell to a hard decline a few years ago and since then it has been non stop. Surreal in some ways. A living dream. My personality type is to fix. My family is everything. My husband, children, and my grandchild.

If I can’t fix it, love it, make it right then it is wrong to me.

I have been taught not to show pain behaviors and not to guard. This is almost nature to me. For years now. Seldom if at all.

Perhaps there are times, yet they would be minimal.

I am on my way to getting better! You won’t be able to until you get rid of everything heavy you ever carried. Why? Because chronic pain has a way of bringing it all back. Heavier than it ever was. You will keep everything inside you. All thoughts, misconceptions, hurts, perceived hurts. You will! You have to let it go. And once you do, you will find peace not only in yourself, but in your pain.

~Twinkle VanFleet

Overview of the Autonomic Nervous System

http://www.merckmanuals.com/home/brain_spinal_cord_and_nerve_disorders/autonomic_nervous_system_disorders/overview_of_the_autonomic_nervous_system.html

The sympathetic division of the autonomic nervous system maintains internal organ homeostasis and initiates the stress response.

https://www.boundless.com/physiology/textbooks/boundless-anatomy-and-physiology-textbook/autonomic-nervous-system-ans-14/physiology-of-ans-142/sympathetic-responses-750-9204/

Fight, Flight or Freeze: The Stress Response

http://psychcentral.com/blog/archives/2014/07/31/fight-flight-or-freeze-the-stress-response/

What is the Stress Response?

What is the Stress Response

Stress Management

http://www.mayoclinic.org/healthy-living/stress-management/in-depth/stress/art-20046037

Chronic Stress Puts Your Health At Risk

http://www.mayoclinic.org/healthy-living/stress-management/in-depth/stress/art-20046037

Post Traumatic Stress Disorder (PTSD)

http://www.nimh.nih.gov/health/publications/post-traumatic-stress-disorder-ptsd/index.shtml

Systemic Complications of Complex Regional Pain Syndrome

Click to access Systemic-Complications-of-CRPS.pdf

Spinal Modulation Completes Enrollment of Its Landmark U.S. Pivotal Trial Evaluating the Axium Neurostimulator System for Chronic Pain | Business Wire

Posted by twinklev

The ACCURATE study enrolled 152 patients at 22 centers throughout the United States. This represents the largest neuromodulation study to be conducted in patients suffering from nerve injuries (peripheral causalgia) or complex regional pain syndrome (CRPS, also known as RSD) to date.

“Approximately 10-50% of patients who undergo common procedures like hernia repair, knee surgery, and other lower limb surgeries will suffer from chronic pain resulting from nerve injury2. These conditions have historically been difficult to treat with currently available technology,” said Dr. Timothy Deer, co-study lead and CEO and President of the Center for Pain Relief in Charleston, West Virginia. “The ACCURATE trial is a landmark study that could change the way we treat these chronic pain conditions. Results from prior European studies have been promising, and we are hopeful that the ACCURATE trial will continue to substantiate the effectiveness of this therapy for our patients.”

Expert Panel Concludes Neurostimulation Can Be Life-Changing Therapy for Chronic Pain

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Released: 12-Aug-2014 10:00 AM EDT Source Newsroom: Johns Hopkins Medicine

via Expert Panel Concludes Neurostimulation Can Be Life-Changing Therapy for Chronic Pain.

An additional article can be found by News Medical:

Published on August 13, 2014 at 5:28 AM

Researchers determine safety and effectiveness of neurostimulation to treat chronic pain

The Communities in which we strive for

Posted by twinklev

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…

Fight for Tomorrow

Posted by twinklev

Always have faith that a better tomorrow will come. We have to or we won’t survive. The life of chronic pain becomes a family disease. In the last few months we have lost over a dozen people in the CRPS/RSD community. At least half to suicide. Most people do not premeditate their suicide. Many do experience suicidal ideations. It has been noted by professionals that “wanting to die or commit suicide” and suicidal ideations are not the same”. If they were more of us would be evaluated and helped before we get to the point of knowing our pain is never going to managed and into the sudden taking of our own lives. When it happens it is often spontaneous. There will have been signals and signs misread. There is always a cause and there will always be an affect. So many are not afforded proper medical care to reduce pain levels. Opioid medications, such as Hydrocodone, continue to be well versed as a gate way drug to harder and heavier medications such as Oxycodone. It has been said a like a broken record over the past decades that Marijuana and narcotic use causes a person to become high risk for Heroin use. I do not believe this to be true. I do believe it’s possible in some personalities. Addictive personalities perhaps, but this does not include our entire population. I am offended for honest chronic pain patients that need pain care who have been dismissed as drug seekers. I am offended by good providers whose practices have been raided for prescribing Opioid medications.

It’s not the Opioid itself that is the epidemic in our society, it is the person who does not take it exactly as prescribed which can lead to abuse and misuse. Re evaluate the patient for possible addiction or consider another pain management plan of action. Either way they need help!

If pain patients aren’t taken care of and the pain cannot be controlled..

The number of deaths continue to rise. The epidemic will be chronic pain related suicides.

Your autopsy report will probably read.. as a result of depression, misus, abuse or other. There will be nothing about really happened. There will be nothing about the fact you couldn’t get pain relief and your last, very last resort was taking your own life.

DEA.. You don’t know pain until you’ve contemplated.

Speak up and speak out!

Let there always be a tomorrow. Fight for your tomorrow!

Seeking Photos for the Video Slide Show Presentation “People Striving to Make a Difference in the Lives of Those Suffering and Surviving CRPS/RSD”

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People Striving to Make a Difference in the Lives of Those Suffering and Surviving CRPS/RSD.

Hi everyone!

I’m seeking Photos for a future video that will feature those of you who strive to make a difference in the lives of those with Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy.

Once all photos are in it will be fairly decided who will be featured in the video. Space will be shared with other’s who work just as hard yet has either never been or has rarely been recognized for their efforts. September is Pain Awareness Month and if all goes well this video will debut during that month.

Your photo can either be a head shot or a body shot. Send up to 2 photos, if you like!

Along with your photo, in the email body, please include:

1. Name, Foundation, Organization, Website Name, Blog Name, Radio Station, Etc. (You can also list all of the above)
2. City and State. (Or Province/ Country) (This video is not limited to the United States)
3. A brief bio on what you do (or have done) to make a difference in the lives of those suffering to survive CRPS/RSD. If the bio is too long it may be edited for space.

If you are a Mother or Father taking care of your CRPS/RSD diagnosed child, you are making a difference in the life of someone. If you are a child (adult or minor) of someone with CRPS/RSD and you are caring for your parent, you are making a difference, too.

In your email please add that you are giving me permission to use your photo and info. (I, (your name/organization), hereby give my permission to Twinkle VanFleet and RSD(S)-CRPS Advisory to use my photo and enclosed information for the Video Slide Show Presentation People Striving to Make a Difference in the Lives of Those Suffering to Survive CRPS/RSD that will be made public via YouTube.

I have personally invited a few people to be featured. If you do not get a personal invite from me this does not at all mean that I would not love to feature you. Please don’t feel shy or as if you aren’t good enough or haven’t done enough. You are just as important! This will be an annual project! No one will know from me if I’ve contacted you or if you sent on your own. That will be your business to disclose or not! ~smiles

Deadline– August 15, 2013. If you need a few day extension due to pain, please let me know before the deadline.

Please send to: submissions@crpsadvisory.com

If you have any questions, don’t hesitate to ask. 🙂

Thank you!
~Twinkle VanFleet

Independent RSD/CRPS Patient Advocate, Spokesperson, and Educator.

California Ambassador at the Power of Pain Foundation