Reflections Of…

Posted by twinklev

The last week has been a bit overwhelming and my previous post somewhat confrontational. That is not the image I want left etched in the minds of my readers, followers or the communities in which I’m involved. I do not belong to a single community, but several. Contrary to what has suddenly become popular belief I am not hateful, bitter or spiteful. I have never in my lifetime been out to hurt anyone, I have only ever helped others. Before the injury which led to my CRPS I took care of children that weren’t my own, one had no blood relation to me or my children, other’s were by blood and did not include my own. I breast-fed a child that wasn’t mine because her own mother couldn’t and the baby couldn’t take any type of formula. I saved that baby’s life. I had happened to just give birth to my second daughter 2 weeks before and so was able to be a surrogate for her.

I cared for 2 dying people. I literally closed one of their eyes upon passing. I was not even old enough to really be put in the position to, but I was and I did.

I’ve lived a life of service.

Before I entered the CRPS Community, I was a controversial writer, reporter, small time. Published in various areas of writing, soft erotica, dance, poetry, I owned a small publishing business for a time on top of a 60 hour work week working for someone else and I was still busy doing for other’s.

I’m not here to sugar coat anything. And especially not from the last few days.

I’ve had attempts to add me to friends lists with names such Nancy Drew (Hardy Boy’s Nancy Drew Mysteries, remember those days?) I had a Mary Mack on my list that I didn’t realize was there (Mary Mack Mack Mack all dressed in black black black with silver buttons buttons buttons all down her back back back, remember the old kids clapping game?) and several other fictitious play names have tried to add me My support group has an influx of people attempting to join. I’ve had pages go up about me, one taken down, I’ve been called awful names, I’ve been told I’m going to be sued, I’ve been apologized to, and told if the person knew my name they would address me by it. I didn’t understand this all day yesterday because the person was messaging me to my name. Then I realized she must think I’m using a nick name. So many of them do. It was assumed I was also.

I’ve been kicked out of what I will call a group to give it anonymity., I will not mention the name and if asked I will not tell you. I honestly do not know if it’s common knowledge or not. All those involved were removed from what I understand. It did seem a little odd for me as I had not posted there at all. I cannot let it hurt me, anymore. I admit that it did! Very much so! I have no animosity toward the administration for their decision.

While many are very upset with me, I do not have any regrets in regards to letting everyone know that the information I posted in the comment section of the previous post was truthful and accurate.

My only regret if it’s even a regret at all is that when push came to shove I shoved back with a vengeance.

Would I do what I did again? I’m not sorry to say, yes! Yes I would! I don’t need popular to survive, I only need to survive. I am not just a CRPS survivor, no….

I am simply a survivor!

My life has shown me that from the very beginning in all it’s let me see and feel for myself.

I wish you all pain eased days and nights,

Proof of my name is included.

~Twinkle VanFleet

A New Beginning: My Life with RSD

Posted by twinklev

A New Beginning: My Life with RSD.

The above blog belongs to featured Blog Talk Radio Host Trudy Thomas.

The Living with HOPE Radio Show is Sponsored by the Power of Pain Foundation.

Living with HOPE began in 2007 under the original title Living with RSD. It was Trudy’s hope to learn more information about her own health issue, the debilitating and painful illness RSD/Reflex Sympathetic Dystrophy and with that a show was born. Trudy interviews doctors, therapists, caregivers, and patients; both traditional and alternative practitioners with expertise that runs from prevention to cutting edge technology.

Trudy empowers, informs and educates her listeners with information that may not be readily available in their local area. Through the power of the internet she has the ability to communicate with and speak to some of the most knowledgeable doctors and researchers in the world.

Some Topics have included: Meditation, Biofeedback, Guided imagery, Relaxation techniques, Breathing exercises, Holistic healing, Coping strategies, Distraction, Depression, Spinal Cord Stimulation (SCS), Pain Management, Medications, Chronic Pain Treatments, Ketamine, Calmare (Scrambler Therapy), Cortical Integrative Therapy (CIT®), Mirror therapy (Mirror Box), DMSO, Low Light Laser Treatment Therapy (LLLT), Functional Restoration, IVIG, Neuropathies, RSD/CRPS, Neuro Inflammatory Disease (NID) and much more.

For more information on how you can listen or even call in please click HERE.

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Listeners are encouraged to call in to ask questions of the guests during the show 1-347-884-9691, and if you miss the show you can listen later by clicking on the play button or downloading the shows archive. If you are on the go, you can call into the show through your home phone or cell phone at the above number and listen live. To speak with the host or ask the guest a question press 1, you can still listen to the show while waiting to go on the air, don’t hang up! Your questions and comments are important! A chat room is also available during the live show.

Living With Hope is broadcast live on Monday’s 4:00 p.m pacific and Friday’s 9:oo a.m pacific.

You can post your questions in the chat room to be answered on air. If the time is not convenient to stop by the live shows, you can listen to the archives at any time on the radio page.

Savy Seniors, Trudy’s newest show is live on Wednesdays 3:00 p.m PST. with co-host, Sharon Rowell covering all the latest news about health, medicine, safety, care taking and programs that are available to help seniors live a fun, productive and long life.

And, for fun of course Trudy does a Saturday show, 3:00 p.m PST, with readings from spirit given by Seers of the Soul and lots of fun music from the 50′s-80′s. Oldies but goodies.

If you are interested in being a guest on any of these shows, please email Trudy at goldfield_nv@hotmail.com.

FAQ: Reflex Sympathetic Dystrophy | The Dr. Oz Show

Posted by twinklev

FAQ: Reflex Sympathetic Dystrophy | The Dr. Oz Show.

Philip Getson, D.O. • Yesterday (July 25, 2013) “I was given the honor of having a post on RSD featured on droz.com Please feel free to comment on it”
“I am delighted to get the disease the exposure it so deserves”. “Here is the link for the RSD post” These above are the personal words of Dr. Getson, I have quoted.
http://www.doctoroz.com/videos/faq-reflex-sympathetic-dystrophy

I am delighted that Q & A’s regarding CRPS/RSD (Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy) made it back to Dr. Oz. via Dr. Getson.

In addition, the differences between CRPS/RSD and Fibromyalgia were touched on.

Paula Abdul tried to do her part in sharing the debilitating outcome this illness causes, but as some of us know television editing can leave a lot out.

Even so I think Paula made her point. There were some people that tried to convince me of how terrible she did, I re watched that segment I can’t tell you how many times and the bottom line is she did great! How much can you do in so little time. It wasn’t an RSD specific show in the first place it was to showcase a vitamin line of healthier living. So yep, good job for what she had to work with.

For Dr. Philip Getson who has been educating and treating CRPS/RSD for decades, I am honored to have spoken to him briefly via email and look forward to again. I also look forward to the P.A.I.N. SUMMIT hosted by the Power of Pain Foundation during Pain Awareness month where he will be Guest Lecturing. I would love to meet him in person and attend the conference in Arizona but if not, I will still be attending via UStream and have already registered.

~Twinkle V.

Gall Bladder Fiasco Continued and hopefully the Final Chapter!

Posted by twinklev

The first part of this story can be found here https://rsdadvisory.com/2013/05/18/endoscopic-retrograde-cholangiopancreatography-52113-due-to-gall-bladder-removal-fiasco/ shared May 18th. I had my ERCP that showed I had Gall Stones hanging out over by the piece of Gall Bladder that was adhered to my liver since March of 2012 when I originally had it removed. The test also showed the lining of my stomach and surrounding areas were severely inflamed. I was given another diagnosis of Gastritis. So of course I waited to see the surgeon again and get my surgery date scheduled. It was scheduled for July 10th, 2013. 1 week ago today!

The surgeon told me that he would try to remove it first like the last time. I would have 4 small incisions. If he couldn’t get it he would have to do a larger cut. I was scheduled for a Laparoscopic Completion, Cholecystectomy, Possible Open, Possible Cholangiagrams. I signed the forms! I had to arrive at Mercy General Hospital at 5:30 a.m that morning for 7:30 a.m surgery. The surgeon told my husband to give him 4 hours, but that he could be done in an hour and a half, but not to worry until the 4th hour. I headed into the OR.

Now I have to laugh about this because I felt my hand zing and then zing again. They were putting me to sleep! But I didn’t go to sleep. So the Anesthesiologist ask me what I did for a living and I went on to babble about RSD/CRPS awareness, educating, working for the Power of Pain, I just chatted them right up and I know they were waiting for me to go down, even gave me more a few seconds or so before, I felt it. I remember looking off and thinking I’m going to go to sleep now and started to say it, but then I woke up in recovery with worse pain than the first time.

I still have swelling, a lump above my top incision that hasn’t gone down yet. When my doc called me the day after my surgery to check up on me, I told him about it, he said it was because that’s where he beat me up the worse. Funny! I laughed! That is where he had to use the tools and manipulate inside me to peel that piece off my liver, he said it should go down in a few days. I hasn’t yet though. I tried to drop the pain medication yesterday and switch to OTC NSAIDS but when I woke this morning I was hurting so bad from the top incision/lump to the side ones. A feeling of being inner bruised. Understandable really. So I’ve switching back and forth from Norco 10/325 to 4 OTC Ibuprofen. The Ibuprofen will help the inflammatory more than Norco will. Tylenol doesn’t touch that type of pain for me.

I was also mentioned to me that I have Crohn’s Disease. It’s a lot to process. My Gastrointestinal problems have become so bad that it seems the likelihood of internal CRPS is more my situation. I’m not going to mention all the symptoms right now, I’ve mentioned some of them in my group, on my facebook timeline, I just really need to find a doctor, a GI or Internal Medicine that is educated in RSD/CRPS, not one who has only heard of it. That was my experience with this surgery, a few heard of it, no one “knew” about it. My own primary doesn’t know “about” it. I had to educated him with just pieces as there is never enough time for it all.

I’m lucky to keep food down, even things to drink, I have to pick and choose carefully, the doc did also send me home with the generic for Prilosec to take a half hour before I eat anything first time each day. I either have diarrhea or can’t potty at all for weeks.

It seems the surgery has eased the pain over under my ribs on the right, but so far the mid back pain and other pain is still here. I had my SCS checked 2 days before my surgery by my Medtronic Specialist. It’s fine!

When the surgeon removed that piece of Gall Bladder it was full of fluid and was growing new tissue. He was able to remove several stones from that same area. The pathology is already back and it was negative for any cancerous cells.

On Monday when I had a follow up to my OBGYN due to inflammation found on my Uterus and the cyst(s) found on my right ovary which is larger than my left side and includes scar tissue as does my lower belly from left side to the entire right from an ectopic and exploratory surgery many moons ago. I opted for what I believe is called Nexplanon. I could have also tried the Depo or an IUD. Never again to an IUD for that is how I conceived my Ectopic twins. And I’ve tried Depo Provera and didn’t believe since these were my only options it was right for me. Normally the implant with is a small flexible tube is used as a form of birth control which can last up to 3 years and it stops the menstrual cycle. Yay! It was implanted beneath my inner left arm. The reason I opted for this was that my other option was a full Hysterectomy. This option buys me some time. I am not ready for more surgery yet. If at all. First of all it’s not safe for those of us with RSD/CRPS and secondly repetitive surgeries just aren’t safe for any of us. We always have to decide in the end what is best for us by weighing the pros and cons to it all.

If your doctors aren’t aware of your RSD/CRPS, please educate them. I do in pieces and portions but we only have so much time in each appointment. If need be take information and have it put in your file. In fact, that is exactly what I’m doing for my 24th follow-up with my surgeon and when I see the other’s next, same for them. My surgeon seems really great and caring. To call my husband at home to check on me and then asked to speak with me for a few moments even though I was resting, I respect that. You don’t get that much now a days. I think he will be appreciative, not upset or offended. Not the people should be, yet sometimes they are, especially when the info comes from no medical degree persons like myself. Some become quite offensive, also. They assume we think we’re know it all’s! Farthest from the truth! So I’ll hand off the info which will include more than 1 source and see which one actually has a broader perspective the next time I see him.

While I’m sure it’s happened before, no one from my surgical team had heard of it and no one from my doctor’s offices had heard of it…

Nor from my own communities online and off, family or friends.

I actually gave birth to a Gall Bladder twice! Just different sizes!

So glad it’s over and I’m on the path to healing again.

One down!

~Twinkle VanFleet

CRPS Survivor

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

Posted by twinklev

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

Cortical Integrative Therapy with Dr. Victor M. Pedro on Living with HOPE Radio Show with Featured Host Trudy Thomas

Posted by twinklev

The following information has been taken from notes as a listener to the show and research, nearly all the words themselves belong to Dr. Victor M. Pedro. I take no credit for these. My goal is to get this non invasive seemingly promising information out so that other’s may find it a hopeful treatment program in their journey with CRPS/RSD, Chronic Pain, TBI’s and other illnesses and conditions.

Yesterday on the Living with Hope Radio show with Featured Host Trudy Thomas and Co Host Barby Ingle . Dr. Victor M. Pedro discussed Cortical Integrative Therapy (CIT®) a technique he uses and developed.

The entire show can be listened to here: http://www.blogtalkradio.com/thebodymindandspiritnetwork/2013/05/29/living-with-hope-with-host-trudy-thomas The Living with HOPE Show is Sponsored by the Power of Pain Foundation.

Dr. Victor M. Pedro’s career began as a Chiropractor and continued on with a Post Graduate in Functional Neurology. He says ” it was a very good starting point for brain function and innovative treatments that could begin to make a difference in peoples lives. He was fortunate enough to receive grant funding from the Rhode Island Legislature which permitted him to do a variety of studies and to study with significant people to get a more in depth and cutting edge picture of what was available in Neurology and how the brain functioned.

Trudy asked ” Does this therapy work for other conditions other than RSD? Dr. Pedro stated Yes! What he wanted his contribution to be is the person credited with creating an algorithm for understanding where in the nervous system to intervene.”

There are plenty of resources that will explain what a brain dysfunction is or pathology is, disease process or diagnostic procedure to figure out what folks are complaining about.

The rehabilitative model is where the challenge for the future lies.

Barby ask’s “Does every patient have a different algorithm? Or do you find they are similar with the same condition? The doctors answer’s ” By algorithm I mean a process we go about to evaluate what the affliction is or what’s wrong with the patient.”

Reflex Sympathetic Dystrophy or Dysautonomias in general are a condition Dr. Pedro has a particular interest in. With this condition he tries to find out how the autonomic system is dis-regulated or not working well and then his team tries to decipher in the patients does this person have Reflex Sympathetic Dystrophy (RSD) because the Sympathetic Nervous System is too high and not being inhibited or is it the Parasympathetic System that’s undergone demise and not effective.

“The treatment is actually different and makes all the difference in the world to the patients outcome, Dr. Pedro say’s.”

Barby ask’s ” Similar to Traumatic Brain Injuries (TBI’s) Would there be a different protocol for that?

Dr. Pedro answer’s “A different protocol in terms of how we’re going to add on different diagnostic pieces to the evaluation. Then we begin to identify precisely which modalities the patient needs. A TBI patient may have a similar pathology of an RSD/CRPS patient, may have similar findings, however we may go about the treatment process slightly differently.”

One of Dr. Pedro’s patients and a good friend of Barby Ingle’s just did an interview which will be released in this Saturday’s (June 1, 2013) edition of Pain Pathway’s Magazine. Please look for it!

Physical, emotional and nutritional needs are also taught this during treatment.

The autonomic nervous system delivers fuel to the body and brain. The autonomic nervous system is the automatic part of the nervous system that controls your heart rate, size of arteries delivering blood or fuel to the body and into our brain itself. This part of the body can be evaluated through a series of tests.

Someone with a compromise in their sympathetic nervous system may not have as much profusion as should be present. The long term consequences are considered regarding how this is effecting the tissue and that’s why the trophic changes present in this pathology.

Barby ask’s “Is maintenance treatment required or is this a one time process?”

Dr. Pedro states “The evaluation process takes 2 to 4 hours depending on the patient.” Based not only on tests, but the patients ability to participate.”

At the end of the evaluation we attempt to draw for them what we believe is wrong in the nervous system and make an educated hypothesis as to where the dysfunction is and what can potentially be done to correct it. A series of windows of observation, sympathetic, autonomic windows of observation more appropriately. We identify these at the end of the initial observation and we give the patient a treatment to see if their pain level comes down significantly or at least appreciatively.

That signals to us they are a good candidate for our program.

Dr. Victor M. Pedro is founder and president of Rhode Island Integrated Medicine, located in Cranston, RI. An accomplished, Board Certified Chiropractic Neurologist, Dr. Pedro pioneered the development of Cortical Integrative Therapy (CIT®)—a breakthrough, research-based treatment designed to address brain and neurological dysfunction in both children and adults.

After remarkable success using CIT® to treat school-age students diagnosed with speech, attention and learning disabilities, Dr. Pedro applied the treatment for use in patients with Reflex Sympathetic Dystrophy or CRPS, dysautonomias, and traumatic brain injury (TBI).

Over the years, Dr. Pedro has lectured extensively on CIT® as a non-invasive, cost-effective treatment for TBI, pain syndromes, dysautonomias, and other brain-related disorders.

Cortical Integrative Therapy (CIT®) has been successful in treating a wide range of painful and debilitating conditions including: ADD/ADHD; apraxia; ataxia; chronic pain; dystonia; dysautonomias; hypotonia; memory difficulties; movement disorders; Parkinson’s disease; Reflex Sympathetic Dystrophy (RSD)/Chronic Regional Pain Syndrome (CRPS); RLS; sciatica; traumatic brain injury; tremors; and vertigo, balance, and gait problems. ©Rhode Island Integrated Medicine

Other keywords in the interview- Inhibitory system, Renshaw cells, Autonomics, Small diameter fibers, Dysautonomias, Limbic system, Antonio DeMazio

http://corticalintegrativetherapy.com/ Cortical Integrative Therapy Rhode Island Integrated Medicine- The Brain Rehabilitative Specialists

http://corticalintegrativetherapy.com/blog/ NBC 10 Health Check Special Report: TBI & CIT® March 04, 2013

~Twinkle VanFleet, California State Ambassador Power of Pain Foundation

If I have mis stated any facts or quotes please contact me at: caambassador@powerofpain.org I will make any corrections immediately. Thank you!

Endoscopic Retrograde Cholangiopancreatography 5/21/13 Due to Gall Bladder Removal Fiasco

Posted by twinklev

This entire ordeal began with my emergency Gall Bladder removal 14 months ago at UC Davis Medical Center in Sacramento California. When I awoke from surgery I learned I had a small internal bleed and that was why a JP drain (Jackson Pratt) was inside my side by a long tube. I also learned that a small piece of Gall Bladder was not removed but no one went into details why. I asked if it would cause me any future problems and I was told it would not. I was sent home days later with the JP drain still attached to my body. At home I was required to measure the blood that had accumulated in the drain bulb, measure it, record it in a log for the doctor and discard the blood into the toilet. I had to do this 3 times a day for 8 days. I could only sponge bathe and stayed in the hospital gowns even at home. I had to pin the JP drain to the gown otherwise it would pull out of my body.

All year long I continued to have pain in the same area right beneath my chest, under the right breast, behind the chest wall, an opening and closing feeling and as it opened and closed a feeling of a fire place poker being shoved in and out.

Everyone thought I was crazy. It couldn’t be my Gall Bladder, I didn’t have one!

Late February of this year I began to have severe pain where the Gall Bladder use to be, I could hardly breathe, I deal with CRPS pain and average a 7 daily, but this pain shot strait to a 10. I thought I was dying! My husband took me to the ER. They didn’t believe it to have anything to do with my upper belly, Gall Bladder either, Xrays showed 2 clips from that Gall Bladder surgery, my Spinal Cord Stimulator (SCS) and it was dismissed as constipation. I’m sure I was constipated too with the meds I take, specifically Suboxone at that time which I took for CRPS pain management the last 3 years, but that’s not what the pain was from. I was sent home with the suggestion to follow up with my primary asap. I did!

He ordered an ultrasound right away. The ultrasound showed I still had stones which was believed to have been inside me since the original Gall Bladder surgery. It also showed inflammation and re growth of tissue as the posterior wall of the Gall Bladder is adhered to my liver.

I was sent to a surgeon. I told him how everyone thought I was nuts when I mentioned the pain being so similar to the original Gall Bladder pain, he said “Well you might be nuts, but it IS your Gall Bladder!” He had a great sense of humor and finally some validation.

In order for him to fix me he will have to cut part of my liver away.

He first opted for an MRI, but since I have an SCS (Spinal Cord Stimulator) I am unable to have one.

Instead he ordered a ERCP.

On Tuesday May 21, 2013 I am having 2 procedures done. The ERCP (Endoscopic Retrograde Cholangiopancreatography). I will be under full anesthesia while the camera is inserted down my throat and for the removal of the stones from my bile duct. If there are no stones found, but they were there, he will still cut the bile duct clean it out and leave a stent or tube behind.

If I end up with Pancreatitis as a result of the procedure I will be admitted to Mercy General Hospital in Sacramento for a few days, if not, I will get to come home the same day if no complications. I also learned that one of the 2 procedures may be rescheduled due to time. I hope not.

This has been going on since late February and the pain while it comes and goes can be so overwhelming even a second trip to the ER 3 weeks ago with an injection of both Toradol and Morphine then Morphine again an hour later didn’t help for 2 hours after I got home.

This needs to be done for me to go on for the actual surgery on my liver. While the stones cause pain, so does the that piece inflamed on my liver. It’s growing new tissue. It feels like back labor. My right side beneath my ribs throb in a way hard to describe.

I feel like that surgery in weeks or months down the line.

One thing that does bother me a bit is that in my xrays at UC Davis ER in February the clips were seen. In the ultrasound less than a month later they weren’t.

I hope I didn’t spring a clip or two. Kinda funny the way I said it, but not really.

This story will have a continuation…

~Twinkle V.

RSD Patient Seeks Community Support

Posted by twinklev

In a telephone interview yesterday May 14, 2013 a Reflex Sympathetic Dystrophy patient stated she has temporarily lost custody of her 16 year old son to Department of Services for Children, Youth and Their Families (DSCYF) and they are trying to remove her 9 year old daughter. The patient from Delaware shared that the vibrations and sensitivity to her hearing has been documented by her doctor and that children services believes she has a mental disorder. Apparently a case worker for the State did a search for CRPS/RSD and found an article which included “Emotional Disturbance” as part of the condition and is using this against her.

Let me try to be more specific while CRPS/RSD can cause a number of secondary symptoms it absolutely does not mean everyone will have them. Unless your doctor has diagnosed you with a mental disorder I do not think this type of state worker is qualified to do so this way. And certainly not by Google search.

Jim Moret, Host of Inside Edition, Attorney and Author of The Last Day of My Life describes his own journey with his son’s CRPS diagnosis in When Pain Becomes the New Normal.

Many of us already face the stigma involved with Complex Regional Pain Syndrome formerly known as Reflex Sympathetic Dystrophy first discovered during the civil war by Silas Weir Mitchell. It is not a mental disease or disorder. It is a physical condition which begins with physical characteristics and symptoms. www.powerofpain.org www.rsds.org

Because this illness is so misunderstood and because there are still so many that are uneducated regarding it’s existence patients face anything from “but you don’t look sick” to “you must be a drug seeker”. This disease does not discriminate! Even children can develop it.

A very high percentage of us, I don’t have the exact statistics, yet I’d guess it to be in the high 90 percentile were active members of society, we worked, raised children, were active in our lives, if single parents raised children alone, some of us had everything, others like myself had enough to just be happy.

Now let me ask you this…

Why would we give all that up for this?

I admit I worry about the single mothers out there with CRPS/RSD who lack family support. Especially when the family does not believe in the illness and when the patient is on disability and the family thinks the patient should be working. Again no education and understanding.

Many don’t even want to know. Do you know how many times I have listened to patients tell me how they tried to reach out to their families, spouses, children with educational material, videos etc, just to learn those people were not interested?

To me it’s no different than learning about Parkinson’s, Heart Disease, Diabetes or any other illness. Would you be interested in that?

This is why ongoing awareness for Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy is so very important and why the power of community is just as important.

There are many disabled parents out there in the world caring for their children.

Each CRPS/RSD patient should be treated on a case by case basis, we should not all be clumped together, one size does not fit all, but the diagnosis is the same.

Autumn asks for your help. She asks that anyone who can come forward to write a letter on her behalf, make a phone call or support her in any way to email her at: Autumn Stevens

~Twinkle VanFleet

I will be attending the RSDSA’s Integrated Solutions to CRPS Conference on Behalf of the Power of Pain Foundation May 10, 2013

Posted by twinklev

I am really excited to announce that in 4 days I will be attending the Reflex Sympathetic Dystrophy Assocation’s (RSDSA) Integrated Solutions to CRPS Conference at San Francisco California’s Airport and Double Tree Hotel.

I will be attending on behalf of the Power of Pain Foundation.

I am eager to learn all that I can while there so that my knowledge regarding CRPS/RSD continues to expand.

I am very much looking forward to meeting the RSDSA team, listening to Guest Speaker’s, and meeting those attending from various Reflex Sympathetic Dystrophy (RSD) and Complex Regional Pain Syndrome (CRPS) Communities both online and offline.

I look forward to writing all about it after the conference.

Thank you Ken Taylor, Barby Ingle and the Executive Board of the Power of Pain Foundation.

~Twinkle Wood-VanFleet

California State Ambassador- Power of Pain Foundation

Now I Lay Me Down… (An RSD/CRPS Poem)

Posted by twinklev

This poem is dedicated to all my RSD/CRPS brothers and sisters. It was written only a few months ago. For many years I had a popular poetry site called Golden Rainbow Poetry and became Golden Rainbow Poetry Creations as it evolved. I had a small business license back then under the same name.

Many of my poems have been lost, some have been found and others are hopefully backed up on a drive I have not located yet. From my earlier years of writing there is a journal type book somewhere that has dozens hand written in. I am hoping it is in the garage in a box.

Soon I will begin to share the ones I do have available. Some have been published in both hard print and audio, in hard bound compilations of 100’s of poets together in 1 book, 4 of my poems live inside those, others on various internet sites. I wrote a poem for 911 that is on audio. The project was published as both hard bound book with an audio CD, mine made it to the audio part.

Each of my poems have a mood, some in imagery that leaves the reader to wonder the meaning and also to connect with the words themselves.

Some of these poems could come from the reader themselves. It could be anyone, anywhere and at anytime.

It is still Nervember (November) National RSD/CRPS Awareness Month. I hope the poem above brings a bit of awareness to those who can’t seem to grasp the meaning of RSD/CRPS. Or… What it feels like.

A special thanks to Barby Ingle, Trudy Thomas, Chris Greulich, and the Power of Pain Foundation.

Thanksgiving is less than 2 days away. I have much thanks to celebrate. Especially for the having the very best husband in the world, my children, grandson and the fire in my flesh and bones I survive however hard.

I am thankful for those friends mentioned above. I am thankful for my mom, sister and extended family. I am thankful for being here to help others, I am thankful for those who help me.

Happy Thanksgiving!

Always be as well as you can be

Wishing each of you pain eased days and nights…