I don’t look sick, sound sick or act sick does that mean I’m in remission?

The question was asked this week in my Support Group-

What do you consider “remission“? 100% back to normal or being able to manage your pain around 2-3 (on the McGill pain scale)…Just curious.

The question was asked because a good friend of mine has a radio show and people are always asking her if she’s in remission because she sounds happy on the air. She often is. Her symptoms aren’t as nearly as bad as they once were but she continues to have issues all the same.

She’s not in remission but has found a way to cope. Namely it is her radio show that has given her back her life. The interviews, research, interaction and all that goes with it has given her purpose and reason to go on. The radio show is her medication. She is wrapped up in so much information that she learns by personally speaking to doctors, other health care personal, authors, herbalists, social workers, therapists and so many more that she is better able to cope with her pain at the time due to the Distraction!

It has nothing to do with remission.

Which begs the question— Just because we don’t look sick, sound sick or act sick does this mean we’re in remission? Answer? Not at all!

So many people have preconceived notions of what sick should be and often times those who make judgements however subtle are the same who become offended if another questioned them at all.

We shouldn’t have to put on a sad face, drag our leg, clench our fist, limp or show pain behaviors just for someone else to believe we’re in pain.

I am not sure h0w anyone could presume or assume one must be in remission if they are able to cope with their pain or because they do not show it.

The same could be said for me. To many it’s seems as though I am active. I have an online support group, I’m a chronic pain advocate, I’ve had an RSD/CRPS website since 2005, I’ve appeared on the radio show I mentioned above both as guest speaker and co host, I’m the California Ambassador for the Power of Pain Foundation, I represented the Power of Pain Foundation at the NAF (Neuropathy Action Foundation) with Barby Ingle earlier this year, I did the same at the Convoy of Hope in September, I worked as Leader for another Support Group for 3 years and so forth, I have this blog and I work hard to promote RSD/CRPS awareness, promote others and support their efforts to do the same.

All the while being in pain each and every day. Many days I cannot even get up. So many days and hours a week wasted because I can’t pull myself out of bed or wake enough to be coherent.

People don’t see this.

Offline I’m barely out in the public. My most often trips are to pain management once a month or to other doctor appointments. Some people assume because I have these titles or because I try so hard I’m better off than they are. Or that my pain isn’t half as bad. If only they knew!

Sadly, pain seems to be a competition. You must be better of than me, or I hurt more than you. If you can do that you must not be in that much pain, you’re smiling today, you must not hurt, you went on a trip? You must be in remission!

I went to the lake this summer with my husband, daughter, grandson, and close family friends whom I call daughters, would this mean I must not hurt or that I must be in remission?

Naww, all it meant was that I was invited and wanted to spend a day with my family. No one saw that I spent the day laying on a blanket. I couldn’t even enjoy the water because it was too cold and my legs wouldn’t carry me back and forth to test it out again.

Another good friend of mine, best selling author, executive director, who travels several times a year advocating, spreading awareness, speaking on behalf of RSD/CRPS also has received negative comments. And while she has been in remission due to in patient Ketamine treatments, what many don’t know is that during these trips and appearances (yes I do mean “during”) or immediately after, she has to check herself into the hospital for a Ketamine booster in order to go on.

No one likes to be judged or ridiculed..

But remember…

Remission is Possible – (-Barby Ingle, Remission Possible)

RSD itself is forever.

—–

 

A Review with Photos of Convoy of Hope Sept 15, 2012

Having represented the Power of Pain Foundation as California Ambassador at the Convoy of Hope held at Cal Expo September 15th, 2012 in Sacramento California I’d like to thank the Power of Pain Foundation (POPF), Barby Ingle, Ken Taylor, POPF Board of Directors, Trudy Thomas, Chris Greulich, Convoy of Hope, Susan Gosselin, Jackie Jurek Miss Folsom Cali USA, Kurtis VanFleet POPF Jr. Ambassador and Volunteers of the day Erik, Kharisma and Erykah VanFleet for all their hard work and commitment.

I was and still am thrilled to have been able to promote awareness, distribute information, and answer questions related to Reflex Sympathetic Dystrophy Syndrome, Complex Regional Pain Syndrome/Causalgia and other neuropathic conditions. I also did a balloon release in the name of the Power of Pain Foundation, RSD/CRPS/Causalgia/Neuro Inflammatory Disease, Cure and Hope!

Cure is barely heard on the video as someone was hugging me at the time, but all other words are heard clearly even though I stuttered some. I’m putting together a slide show video of the event and hope to have it ready this month. It will consist of more photos an information of the event not just of the Power of Pain Foundation but of the entire day. All photos were taken by POPF Jr. Ambassador Kurtis VanFleet. A video of the balloon release will also be uploaded soon.

It was such a wonderful day, so many people were given free groceries, clothing, shoes, vision, dental and medical screenings, hair cuts, portraits, breakfast, lunch and so much more. This years turn out of a bit over 5,000 attendees was much lower than the previous years. The economy hurt this event from being even greater. Not enough donations to the Convoy of Hope, people couldn’t afford gas or public transportation to get there. People come from areas outside of Sacramento and weren’t able to this year.

People were camped out the night before the event to get in early, so gates were opened early, but also closed an hour early to accommodate for timing.

Total Guest Attendance- 5,832

Total Family Portraits- 955

Total Guests Prayed with- 4,698

Total Haircuts- 1,000

Total Women Served- (NBCF Tent)- 678

Total Shoes- 800+

Total Participating Organizations- 30

Total Volunteers- 1,763

1,400 Guests Served in the Clothing Tent

95 Dental Exams

50 Vision Exams

300 Received $500 Gift Certificates for follow-Up Vision Care

24 Pregnancy Exams

400 Served in the Job Tent

All these services were Free!

In addition thousands of pounds of food, water, and juice was distributed.

Medical, dental and vision supplies are costly.

Power of Pain foundation Table at Convoy of Hope

Jackie Jurek Miss Folsom Cali USA and Power and Pain CA Ambassador Twinkle VanFleet

Yesterday we received a Thank You Card from the Convoy of Hope. While the card was sent to me it very much belongs to the Power of Pain Foundation as a whole.


It is a shame that our economy is in such bad shape that even a good thing, an all free collaborative event was cut in half by those who were able to attend when we know the 1000’s who couldn’t be there needed the free groceries, medical exams and freebies that were offered and given away.

I pray for all those faces I seen. Those I spoke to and those I didn’t.

Let us all pray… for one another..

and let us TURN PAIN TO POWER… (powerofpain.org)

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Jackie Jurek Appearing with the Power of Pain Foundation at Convoy of Hope Sept 15, 2012

Introducing Jacqueline Jurek, a contestant in the nationally televised “Miss CALIFORNIA USA” Pageant, Jackie will be representing Folsom Cali USA and has joined the team at the Power of Pain Foundation.

Jacqueline Jurek is an aspiring neuropsychologist from Sacramento, California. She graduated High School in 2007 with honors at El Camino Fundamental and went on to SDSU where she recently graduated in May of 2012 with a Bachelors of Art in Psychology. She is currently in the process of applying for Clinical Psychology Grad School at Sac State While taking EMT classes at a Local Community College and interning with the Sacramento Country Coronors office in the Invesigative Department. In her spare time Jackie enjoys the outdoors, staying fit, and spending time with family and friends. Swimming, hiking, country concerts, and being involved with her church are among the activities she enjoys the most. She’s all for standing up for what you believe in, striving for your goals, and making sure not to take life too seriously that you forget to enjoy it.

As a contestant in the the nationally televised “Miss CALIFORNIA USA” Pageant, Jackie will be representing Folsom Cali USA and is excited to join the team at the Power of Pain Foundation with her passion in neuropsychology and is ready to help make a difference in her community and her fellow neighbors.Jackie will be making a special appearance at this years Convoy of Hope being held at the Cal Expo on September 15, 2012 where we will be distributing valuable and informative pamphlets, books and materials on Reflex Sympathetic Dystrophy, Complex Regional Pain Syndrome/Causalgia and Neuropathies, raising RSD/CRPS awareness, answering questions, having a photo book of RSD/CRPS limbs available for viewing, a free raffle and more.
Reflex Sympathetic Dystrophy Type 1, Complex Regional Pain Syndrome Type 2/Causalgia is a painful, debilitating, neuropathic and auto immune disorder. Reflex Sympathetic Dystrophy Syndrome (RSD) also known as Complex Regional Pain Syndrome (CRPS)/Causalgia is an illness first discovered by Weir Mitchel during the Civil War. Over 10 million people have been diagnosed in the U.S. Alone. The McGill Pain Index rates RSD a 42 out of 50 and is listed as the most painful chronic disease that is known. While it seems as if it is a rare disease it’s not, yet not many know about it. It’s our goal to change that.
RSD/CRPS is a physical condition. Any depression or psychological manifestations are secondary do to the illness and due to the fact it is so painful to live with.
Practical Management of Complex Regional Pain Syndrome
Eric S. Hsu, MD*
Abstract:  Complex regional pain syndrome (CRPS) describes a diversity of painful conditions following trauma, coupled with abnormal regulation of blood flow and sweating, trophic changes, and edema of skin. The excruciating pain and diverse autonomic dysfunctions in CRPS are disproportionate to any inciting and recovering event. CRPS type I is formerly identified as ‘‘reflex sympathetic dystrophy.’’ CRPS type II is the new term for ‘‘causalgia’’ that always coexists with documented nerve injury. The present diagnostic criteria of CRPS I and II depend solely on meticulous history and physical examination without any confirmation by specific test procedure (or gold standard). There are only few clinical studies with large-scale randomized trials of pharmacologic agents on the treatment of CRPS. Bisphosphonates have been studied in multiple controlled trials, based on theoretical benefit of bone resorption, to offer pain relief and functional improvement in patients with CRPS.Many current rationales in treatment of CRPS (such as topical agents, antiepileptic drugs, tricyclic antidepressants, and opioids) are mainly dependent on efficacy originate in other common conditions of neuropathic pain. There are additional innovative therapies on CRPS that are still in infancy. No wonder all the treatment of individual CRPS case nowadays is pragmatic at best. Although the interventional therapies in CRPS (such as nerve blockade, sympathetic block, spinal cord and peripheral nerve stimulation, implantable spinal medication pumps, and chemical and surgical sympathectomy) may offer more rapid response, yet it is still controversial with unpredictable outcome. Nevertheless, we need to start pain management immediately with the ambition to restore function in every probable case of CRPS. An interdisciplinary setting with comprehensive approach (pharmacologic, interventional, and psychological in conjunction with rehabilitation pathway) has been proposed as protocol in the practical management of CRPS. It is crucial to have a high sensitivity value combined with a fair specificity in revising diagnostic criteria of CRPS. The validation and consensus for new rationalized diagnostic criteria of CRPS could facilitate further research to enhance clinical outcome including quality of life. These endeavors to minimize suffering from CRPS would certainly be appreciated by many patients and their loved ones.
keywords: complex regional pain syndrome, reflex sympathetic dystrophy, causalgia, pharmacologic
More recently we have learned that RSD/CRPS is a Neuro Inflammatory and Neuroautoimmune disorder. It can effect any part of the body. It can spread from a single limb to several and it can involve the internal body as well. This does not happen in all patients, but it can happen.
Not only will Jackie be representing the Power of Pain Foundation with me, but she will be available to take photos and sign autographs with the guests that come to our booth. Come support Jackie, the Power of Pain Foundation and the Convoy of Hope at this spectacular event! We hope to see you there! September is Pain Awareness Month!
If you have any questions or for further information
Contact: Twinkle VanFleet
CAAmbassador@powerofpain.org
916.850-0RSD(0773)
(This #  is not for personal use)
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