Living with HOPE Radio Show Now A “Featured Host” On BlogTalk

Posted by twinklev

I am absolutely thrilled to announce that The Body, Mind and Spirit Network is now a Featured Host on Blogtalk Radio! This includes the popular Living with HOPE Radio Show 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. She interviews doctors, therapists and patients; both traditional and more recently alternative practitioners with expertise that runs from prevention to cutting edge technology.

Trudy strives to empower, inform and educate 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.

Guests/Interviewee’s have included: Physicians, Counselors, Spiritual Healers, Psychologists, Alternative and Homeopathic Healers, Medical Authors, Biographers Researchers, Clinical Trial Physicians, and many more.

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), Mirror therapy (Mirror Box), DMSO, Low Light Laser Treatment Therapy (LLLT), Functional Restoration, IVIG, Neuropathies, RSD/CRPS, Neuro Inflammatory Disease (NID) and much more.

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, caretaking 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.

Living with HOPE is Sponsored by the Power of Pain Foundation

We hope to see you there!

Our Journey from Coronary Heart Disease to Quad Bypass Open Heart Surgery

Posted by twinklev

My husband Erik was scheduled for an Angiogram of his heart on December 10th, 2012. He’s had 2 stents in his heart since his first heart attack only weeks before his 38th Birthday. In 2011 he had a second smaller heart attack when he was 43. The first heart attack was a 100% blockage of the lower artery. We made it to the hospital just in time. Mercy General Hospital in Sacramento took him straight in, no wait, they noted the signs. That saved his life that day! We all know there are times we wait hours upon hours in the Emergency room. I did myself when I was having a severe Gall Bladder attack at another local Emergency room, only to find nearly 10 hours later I need emergency Gall Bladder removal surgery. These things happen. If it had happened the day of my husbands first heart attack, he probably wouldn’t be alive today.

After his first heart attack he was diagnosed with Coronary Heart Disease. This first heart attack caused damage to the lower part of the heart. I prayed and prayed that they could make him a new man. I hoped that after healing he would feel so much better again. He’s had 2 stents in his heart since the first heart attack. After the second heart attack he was taken back into surgery where it was found 1 of the stents was faulty and the other was put in wrong. 1 was fully replaced and the other repaired. He still has those stents inside his heart to this day.

As I wait in the Cath Lab waiting area while he was in surgery for the Angiogram, the wait seemed like forever. When he came out, he was beyond emotional, he just learned he needed the bypass which also meant the job he was just hired for at $27 an hour for 8 weeks he would no longer be able to take.

Dr. Ochoa came out to speak with me as they continued to roll my husband to recovery and told me about the vessels being constricted, showed me photos of his arteries and how very thin they were causing lack of blood flow to the heart. At that time we thought it would be a double bypass.

We met with the surgeon, Dr. Dein explained the pros and cons of the surgery, laid it all on the line, possibility of infection, death etc.

He then showed us the actual video of my husbands heart. The doctor said it would be at least a triple bypass but that he would not know for certain until he got inside.

On December 19th we spend the day doing Pre OP tests, tons of blood tests, he was shaved, arms, legs, chest, matching his blood to a blood bank it he needed blood during surgery, etc. They fed us both a meal since we were there at dinner time.

Surgery was scheduled the next morning. We were to arrive at 5:00 a.m

We arrived. He was prepped, IV’d, gave him 2 Ativan to relax him, we talked, told each other how much we loved each other and he went into surgery approx 6:30 a.m.

Hated waiting, the unknown, just me, myself and my thoughts. Thinking positive, chanting positive phrases, over and over again.

Waiting, resting, dozing, alert, I finally went down to the van to rest again, our niece Renata was on her way, showed up for support, with food, water, fruit, so that we would have something to eat. She had only been there just a bit, I came back up about 8:10 a.m and then I received a call on my cell phone. It was a nurse, my heart thumped, I learned an emergency with another patient had come up and they had just wheeled my husband back to the Cardiac Support Unit. Surgery Cancelled.

We would have to start all over the next A.M.

Our son Kurtis drove us home. He had just got his drivers permit only days before. The night seemed to go by slow, everyone was exhausted. My husband had to re fast again at 10:00 p.m.

I didn’t get but a wink of sleep. At 2:00 a.m. I showered, braided my hair, put my wrap around it (like a head band, tied to the side) and laid back down. Fell asleep for a few minutes or so and woke up and dressed at 4:00 a.m.

We were off again. My husband was going into Open Heart Surgery 6 days after turning 45 years old.

We went through the process again, IV’ing him, Ativan again, there was a bit of a delay do his patient number changing the prior day, ugh, finally it was all figured out. Resigned authorizations etc.

And off we were as they wheeled him into the OR for the second time.

January 21st, the day the world was suppose to end. As he was being wheeled in, the sky lit up orange and a rainbow appeared. I missed it since I was walking behind him. Our daughter Kharisma who couldn’t get the day off work to be with her dad because her boss didn’t have anyone to cover her captured the image on her cell phone as she was walking to work. It was like God and the Heavens above saying… It will be alright! I still hadn’t seen it until hours had passed in the waiting room.

Renata, our niece, my husbands sister’s daughter arrived once again. Renata’s mom passed away years ago. She had also had bypass, survived but passed away later. She was only in her 40’s. My husbands sister Tanya, her husband Chris and their daughter Katrina also came. Renata’s husband Tom arrived also.

Our daughter Erykah and son Kurtis were also there both days.

At noontime Kurtis asked one of the nurses how much longer for husbands surgery and we were told at least 2 more hours. It seemed like forever already. At about 2:50 p.m. the nurse came out to say it was going well. A bit later the surgeon came out to speak to us. He came out of the OR and into the first recovery at exactly 3:40 p.m.

I was so relieved. The day seemed so long.
I would get to see him soon!

They said in a half hour I could see him. I waited 40 minutes and tried but had to go back out and wait another 15 minutes. More waiting….

I waited another very long 30 minutes to be sure I could see him. I picked up the phone outside the ICU and asked to come back in. I was allowed but only for a few minutes. I went back and seen him. I had prepared myself for what I had been told by the surgeon and this is that the first time I would see him after surgery that he may look deceased. (deep breath) this is because of the heart being stopped and the lungs being collapsed and well technically he was dead during the time the bypass machine and so forth kept him alive while they operated. Oh how nervous I was.

I went back alone. (exhale) he did not look deceased thank God. He did not look well of course but he wasn’t as white and cold as was described to me. Probably because they had already began the warming process of slowly bringing his body temperature back.

The nurse asked if there was other family there, I said yes. She asked if they would all like to come in for a few minutes to hear an update on him. I went to get them. At that point I had only spent but a moment with him.

I left to get the family.

We returned. It was myself, our daughter Erykah, our son Kurtis, his sister Tanya and her husband Chris.

While the nurse was updating us, I asked if I could touch him. She said that I could. I gently brushed my finger tips across his cheek and then forehead. He was cool, but not cold. We weren’t allowed to stay but a few moments but I could return at 10:00 p.m. It was approx 4:00-4:15 pm at that time. I gave my husband a finger kiss…

Kissed my own fingers and placed the kiss to his cheek.

Everyone left to go home after seeing him except for Kurtis and I. We left to go down to the van to get some rest and wait to see Erik again at 10:00 pm.

Fell asleep and woke to go see him, he was still in the original ICU on the 3rd floor. He was still intibated with tubes breathing for him. He had 4 large tubes draining blood from his lungs and main incision to the heart.

When we went back up to see him I was told he would likely not know of my presence. I talked to him and rubbed his head and told him he did good and how much I loved him. He moved his leg. Our son and the nurse said that was probably just a twitch so I continued to talk to him, I told him again how good he did and that he made it, he lifted his chin and then the nurse realized he was acknowledging me. I stopped talking to him as not to excite him in any way… just an I Love You until the next morning when I would be back to see him.

Erik VanFleet Removal of artery from left arm for Quad Bypass Open Heart Surgery Dec 21, 2012

They had taken an artery from his left arm. 12 inch scar. And a vein from his right leg, 8 inch scar. The leg is still stapled together as is the 12 inch heart incision as I write this. Staples come out in bit less than 2 weeks now. They stay in for a month post surgery. The arm is stitched on the inside.

He was taken off intibation first thing the next morning of December 22nd.

Kharisma came up the next day, as did my husbands brother Jim and wife Susanne. Each arrived from different parts of town at about the same town. Jim and Susanne live in Sunol CA toward the Bay Area and came through a hard storm. Our daughter Kharisma came from West Sacramento.

The third day his heart rate was so high there was cause to worry, but it came down by that night. His Diabetes played a factor in recovery also and will continue to do so. Sugar and Sodium are the biggest No No’s now.

Lifestyle maintenance is a must. For all of us.

We spent Christmas Day in the hospital too. By this time it was 4 days after surgery and I was finally able to stay with him in his room.

He spent time in recover, 2 separate ICU units and then another recovery unit.

The day before we came home, he was moved to yet another room down the hall on the 4th floor due to smoke smells of fireplaces coming in through the air vents. We’re hyper sensitive to the smell of smoke, especially Erik, ever since the fire that destroyed the home we were living in back in 2000. We lost absolutely everything. Even the walls and roof burned down. Erik saved our baby boy’s life by tossing him out the bedroom window the only room in the house that hadn’t fully burned at the time. They were both sleeping in it.

We didn’t have renters insurance. Hard lesson learned. Erik was burned pretty bad, smoke inhalation, but our son after being checked out was okay enough to come home with me. Erik spent the night in the hospital. 2 days before Thanksgiving, spent the holidays in a motel, went to a friends for Thanksgiving and spent Christmas of that year together and alone.

We’ve been there for one another through so much. January 26th will be the 12 year anniversary of the work injury that caused my CRPS. Tearing the tendons and ligiments off the bones of my right foot led to one thing after another after another.

I’m taking care of him now, as he’s taken care of me. A man takes care of his women and the woman takes care of her man. I don’t consider it an equal partnership, I am subservient. I always have been. I also have a good man to care for me, who’s never abused me, who encourages me to fulfill my goals while I encourage and support him. Heading on 27 years together. We renewed our 25th wedding vows over the summer time.

I brought him home on December 28, 2012. He’s been home a week yesterday.

We spent a quiet New Year at home together. Just us.

I (We) were given the best Christmas gift ever…

… The Gift of Life.

There could never be a better or more valuable gift than that!

He has a long road to recovery ahead and I have a long road to travel with him..

My heart keeps telling me …

… This too shall come to pass….

The world didn’t end that day after all…

Instead, a brand new beginning began!

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…

Surviving the Fire

Posted by twinklev

One of the hardest parts of living with CRPS is the not knowing. Not knowing when the fire will ease down, or the icy cold to run warm. Not knowing when the ache will settle or quality sleep will come. Not knowing if you’ll doze off, even when everyone else thinks you’re still awake because you appear to be. Not knowing why you’re being sent to a new doctor, or how the bills will get paid. Not knowing how to support your spouse the way you use to because you can’t work anymore.

Feelings of inadequacies and worthlessness often override feelings of joy and hopefulness.

Yet you still smile… try to make other’s laugh, you laugh yourself.

The title of this blog is just about right for this post. When chronic pain and depression collide we’re left with pain and despair crashing into one another. And a vicious cycle that if we don’t pull ourselves out of either by self or with help will just keep bouncing back and forth. There’s nowhere to go. Chronic pain often causes depression and in turn the depression causes even more pain. Stress will just exasperate the two. What might come of all this? A horrible Flare-up. What can we do? We have to break the cycle. Intervene!

My RSD CRPS fire burns steadily, when I have a Flare-up it becomes a raging inferno, so hot, like a steam burn. There have been times this fire has become visible to the eye. My skin has appeared to burn from the inside out leaving discoloration that very much looks like steam or hot water burns. My bones ache so deeply they are screaming.

An excerpt of an article/essay I first wrote in 2009 (Flare-ups and Flare up Protocol)

“I’ve learned to help myself during these times. Duration, frequency and intensity is something that I have to take control of. We all have to. We truly have to. The tools I use during these times are called my “Flare-up Protocol”. My flare up protocol includes the 3, 20’s.

The 3, 20’s are:

Exercise (ie, Yoga, stretching, walking, if able, light weights, activity, etc)

Modalities (ie, anything that can be placed on the body for pain relief, such as a tens, heat, hands, etc)

Distraction (ie, Memory master system, games, meditation, relaxation, fun, etc.

These can also be considered coping strategies.

My favorite is laughing.

The 3, 20’s mean 20 minutes of exercise, 20 minutes using modalities and 20 minutes of distraction.

These should be done whether or not one is experiencing a flare, but especially during. And up to 3 times a day.

While it’s easier said than done, the worse thing to do for a flare-up is to do nothing at all. Bringing us back to the use it or lose it theory which is quite accurate. Doing nothing can cripple us just as much as the pain itself.

I imagine a few of you might be thinking “You’ve got to be kidding me?! You want me to exercise when I’m hurting this bad? You must not understand” Oh but I do, I’ve said it and thought it a hundred times over myself.

While some will not want to take this to heart, we have to take responsibility for our own pain, everyone has to learn to and implement their own Flare-up protocols to get through these extra overwhelming, overbearing, debilitating flares.

As people we expect our doctors to take our pain away and we become discouraged when there aren’t any answers to satisfy our questions. We become depressed and insecure, yet We have to remember that RSD/CRPS is an incurable illness. Classified incurable because there isn’t a cure to it. There really isn’t anything the doctors can do to fix it. If the injury is correctable, it probably isn’t RSD. Our health care professionals can help us with medications and procedures, and that’s it really… just help us along.

We’re usually directed to pain management when our other doctors are at a loss. Pain management is just that, management. Again, not a cure. An area of practice that helps us manage our pain, not make it disappear. They are intended to help us live some sort of fulfilling life when nothing else can be done. Pain management is usually a last resort and the rest is up to us.

We might not like it but we have to take primary responsibility for managing our own pain because there isn’t enough knowledge or medical and scientific certainties out there to do it for us.

Flare ups are apart of having RSD/CRPS or a chronic pain condition. They’ll never go away, we have to learn to accept this. But, with practice, we can better learn to control them.”

http://crpsadvisory.com/rsdcrps_flareups_and_flareup_protocol.html

There have been many times I have used muscle relaxation, progressive muscle relaxation in place for exercise laying down. I do simple Yoga stretches. My right calf has had atrophy for 11 years now and continues to worsen. It’s important to help our bodies not waste away. My exercise is also listening to music and moving my body to it the best that I can even while sitting upon my bed.

So how do you survive it? Relax! Try removing worry from your life. Again easier said than done. I know, I continue to struggle with the same issues. The not knowing, the unknown. What will tomorrow bring. For one thing it’s best not to tell ourselves tomorrow will be an awful day. Why? How do we know yet? Tomorrow isn’t here. Positive self talk is helpful. I should practice more of what I preach. Learn how to get Freedom from Pain and Discover Your Body’s Power to Overcome Physical Pain.

I use my imaginary baskets. In my mind I have 3 baskets. 1 for important things, tasks, people, places, issues, etc, 1 for the moderate and 1 for it can wait a bit.

Everything is important to me. So this is difficult. I care so much about people. I often times care too much which causes me to carry much on my shoulders. I don’t know any other way to be. I serve, I give, I care and I love to.

I have to decide what is most important to put into the important basket. I need to learn to put more in the 3rd basket. By putting everything into my first basket I get behind, my moderate basket rarely has enough in it. I end up in a crash and burn. If it’s used right it really can work. Even with kids.

When we’re happy, everyone around us is happy. We all know that saying.

Deep breathing is helpful, meditation, relaxation, guided imagery, progressive muscle relaxation, distraction, modalities, I’ll leave out exercise 🙂 , support groups, not carrying the world on your shoulders alone, aroma therapy, bubble baths and soothing music, practicing appreciation, being thankful.

I’ve been scheduled to see a Pulmonary Specialist based on my sleep study results. No one has given me any specifics… “not knowing”. I admit I’m nervous as I don’t know why. All I was told is that it didn’t seem to show Sleep Apnea which I was tested for.

I do know one thing, regardless of how hard it all is..

I am, so far, surviving the fire…

and I hope you are too!

Help Make It Happen! Aunt Barby Hurts – A Children’s Book about Chronic Pain

Posted by twinklev

Please, Help fund this project in NERVEmber! 2012

Aunt Barby Hurts – A Children’s Book about Chronic Pain
A full-color story book that will improve the daily lives of families that deal with the struggles associated with Chronic Pain.

To understand the importance of this book, Watch the Video!

Go to http://www.indiegogo.com/aunt-barby-hurts to make a contribution to this great project.

Please make a contribution no matter how small, every dollar helps us reach the goal. This is a unique and worthy project to help our young population understand how to interact with those who experience some kind of chronic pain. Contributions can be as small as $1.00 and gifts will be given to the higher donations starting at only $10.00. Click on the image and see what its all about.

What we’re hoping to do, with your help, is create a children’s story book that deals with the topic of chronic pain. It will be a fully illustrated story; not merely an instructional handbook. And the goals of the book will be to introduce the idea of chronic pain, comfort children who know someone with chronic pain, and to help them learn ways of playing with, showing affection for and caring for that person.

What?

Why?

I was watching my son and his cousins interacting with their aunt Barby, who suffers with chronic pain. It was difficult for them to understand why they couldn’t give her hugs, or make loud noises. Looking at her, she doesn’t seem hurt; she doesn’t have a cast or even a band-aid. Chronic pain is often invisible, which makes it difficult for children to understand.

They would forget and sometimes play too rough with her. Sometimes that would hurt her and she would cry out; then they would feel guilty, as if they are the one that caused her to be in pain. They even started to think the best thing was to leave her alone and play somewhere out of her way. But Barby wanted to play with them, talk with them and show them how much she loved them.

Seeing this, I wondered how this might be playing out in other homes with family members who suffer from chronic pain. Over 116 million people in America have chronic pain. I thought there must be a good way to teach the children in these families all about it, how to help the family member cope, and how to play and have a great time with them: to have a normal full relationship. In talking with Barby, we agreed that a children’s story book would be the best way of dealing with this type of need.

How?

Tim and Barby will work together to create an engaging story that directly addresses many of the daily challenges of living with Chronic pain and presents them to children in a gentle and natural way. Once the story is complete, Tim will develop the artwork to bring the story to life. Tim is a fully digital artist, who works in Photoshop with a Wacom tablet.

After the story and art are complete, they will be laid out for high-quality printing as well as developed into a digital app for phones and tablets.

November is “NERVEmber!”

We’d like to dedicate this project in honor of NERVEmber 2012, the month for Neuropathy Awareness.

Tim Ingle- Co Author and Illustrator

Barby Ingle- Co Author

www.powerofpain.org

www.facebook.com/powerofpain

www.twitter.com/powerofpain

www.linkedin.com/powerofpain

Fixed Funding campaign

This campaign will only receive funds if at least $13,999 is raised by Fri Nov 30 at 11:59PM PT.

It’s crucial that this project receives it’s funding by the deadline in order to proceed.

Most people don’t realize how far a dollar with go. If all of my friends, Barby Ingle’s friends, the Power of Pain Foundation’s friends, supporter’s of the Power of Pain Foundation, supporters of chronic pain and RSD/CRPS awareness can give a gift of $2 we could reach our goal.

I say “we” and “our’ because this project has the potential of changing lives. Making happier lives. Teaching children how to interact with those of us in pain and helping us care for them while hurting.

If you are a group, an organization, a business, please start a donation jar and donate no later than November 30th.

Please go to http://www.indiegogo.com/aunt-barby-hurts

I gave, will you give with me?

It all starts with us!

NERVEmber (November) is National RSD/CRPS Awareness Month!

Posted by twinklev

November is our nationwide Reflex Sympathetic Dystrophy (RSD), Complex Regional Pain Syndrome (CRPS) Awareness Month!

The Power of Pain Foundation calls this Nervember. There’s 2 meaning’s behind it and I hope that I’m explaining it properly. Nerve of course would be for nerves, and the nerve pain and/or damage we experience and ember, coals, fire, what our pain feels like. Barby Ingle Executive Director of the POPF explains during her hour long interview on the Living with HOPE Radio show Monday October 29th, 2012.

You should be able to find that episode here: Living with HOPE with Guest Barby Ingle http://www.blogtalkradio.com/thebodymindandspiritnetwork/2012/10/29/living-with-hope

The episode is still availabe in the archives to either be listened to from Blog Talk Radio or by download. Barby also discusses several upcoming events for Nervember. Including a full day 6th Annual Arizona State Management Conference Webinar November 3rd, 2012.

For a really great blog, don’t forget to visit: Patient Awareness by the Power of Pain Foundation at www.PatientAwareness.org featuring writer and editor Chris Greulich. Still in it’s infancy, born only a few months back, you won’t want to miss this one. It’s growing by leaps and bounds. So much more pain and patient related information to come.

I can’t wait!

Patience Grasshopper…

Please support a loved one, friend, colleage, or even an acquaintance that you know who may be suffering from and attempting to survive this painful and debilitating neuro inflammatory auto immune disease. Even those you don’t know need your support.

We ask that you wear Orange as many times as possible throughout the month of November. Whether it be an awareness bracelet, clothing, anything. If you don’t have anything on hand, you can get into the spirit with us by making yourself an orange tag that say’s “I Support RSD/CRPS Awareness” or “I Hope for a Cure for RSD/CRPS”. Use your imagination, we’ll be thankful to you!

1000’s are getting together on November 5th, scattered throughout the world to wear orange in support of RSD/CRPS awareness day. The link to Rebecca Hale’s page is- https://www.facebook.com/events/251987344922784/

Don’t forget to tell everyone that you know to wear orange too and why. The more people you teach and who become educated in why we’re doing it can pass on what they’ve learned to the next person while wearing their orange and that person to the next..

and that person to the next..

If we all take part soon enough more and more people out there will become familiar with the words.. the letters..

R S D C R P S

Then we can rest easy and begin again.

What are you doing to this month in the name of RSD/CRPS awareness? Would love to hear from you!

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

Posted by twinklev

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.

—–

Learning Glia

Posted by twinklev

There’s been a lot of discussion lately about Glia, Micro Glia, Glial Cells and Glia Cell Activation. It’s been noted that these cells play a role in RSD/CRPS.

The Living with HOPE Radio Show http://www.blogtalkradio.com/thebodymindandspiritnetwork with Host Trudy Thomas ran a weekly live feature on the topic titled “Glia, what is it?” with Guest Chris Greulich Writer and Editor of the Patient Awareness Blog http://www.patientawareness.org hosted by the Power of Pain Foundation.

The episodes are now in the shows archives for listening to either directly from the site for by downloading.

I myself find this fascinating and continue to learn all that I can. I encourage each of you to research what you can too. Some key words are listed above, you can also add RSD/CRPS to it. Other articles are located in my pages section and there will be more to come. We all need to take an active role in our own illness, read, research, talk with others who understand, listen and learn.

Remove all to as many possible stresses and triggers from your lives as these only cause the pain to escalate with Flare-Ups. Practice calm and appreciation.

From what we’ve learned so far the closest thing to deactivating the glia cell activation is Ketamine. Low dose Naltraxone is working to minimize the pain of some of those who’ve had the opportunity to try it, but not to the point of remission that Ketamine offers many.

I myself am no longer taking Morphine, or any of the Vicodin family, but instead Suboxone. I take it as my main pain reducer not to fight addiction.

I could return to one of the others, but I choose not to. As long as the Suboxone continues to work well enough, I’ll remain on it. I got to the point that my other pain relievers failed to ease me or take the edge off.

Many suffer from Opioid Induced Hyperalgesia and don’t even realize it. Yet are fearful to wean off their medications to find out. Trust me, I would be scared too, but sometimes we have to take that hard step forward even if it’s no longer literal to find out what’s best for us.

Time to learn much more about Glia and what else shuts down it’s activation.

I pray that if a cure doesn’t make it to us in my lifetime it will for certain in my children’s for who knows how many more million will be affected by then.

Nervous tissue consists of neurons, which are the cells that conduct signals, and supporting neuroglial cells such as microglial cells, astrocytes and oligodendrocytes.

Nerve – Bundle of nerve fibers outside the central nervous system.

Neuron – Nerve cell that characteristically has three parts: dendrites, cell body, and axon.

Neuroglial Cell – One of several types of cells found in nervous tissue that supports, protects, and nourishes neurons.

Microglia- A Promising Target for Treating Neuropathic Pain

Posted by twinklev

Modulation of microglia can attenuate neuropathic pain symptoms and enhance morphine effectiveness.

Mika J.

Abstract

Microglia play a crucial role in the maintenance of neuronal homeostasis in the central nervous system, and microglia production of immune factors is believed to play an important role in nociceptive transmission. There is increasing evidence that uncontrolled activation of microglial cells under neuropathic pain conditions induces the release of proinflammatory cytokines (interleukin – IL-1beta, IL-6, tumor necrosis factor – TNF-alpha), complement components (C1q, C3, C4, C5, C5a) and other substances that facilitate pain transmission. Additionally, microglia activation can lead to altered activity of opioid systems and neuropathic pain is characterized by resistance to morphine. Pharmacological attenuation of glial activation represents a novel approach for controlling neuropathic pain. It has been found that propentofylline, pentoxifylline, fluorocitrate and minocycline decrease microglial activation and inhibit proinflammatory cytokines, thereby suppressing the development of neuropathic pain. The results of many studies support the idea that modulation of glial and neuroimmune activation may be a potential therapeutic mechanism for enhancement of morphine analgesia. Researchers and pharmacological companies have embarked on a new approach to the control of microglial activity, which is to search for substances that activate anti-inflammatory cytokines like IL-10. IL-10 is very interesting since it reduces allodynia and hyperalgesia by suppressing the production and activity of TNF-alpha, IL-1beta and IL-6. Some glial inhibitors, which are safe and clinically well tolerated, are potential useful agents for treatment of neuropathic pain and for the prevention of tolerance to morphine analgesia. Targeting glial activation is a clinically promising method for treatment of neuropathic pain.

Microglia: a promising target for treating neuropathic and postoperative pain, and morphine tolerance.

Wen YR, Tan PH, Cheng JK, Liu YC, Ji RR.

Source

Department of Anesthesiology, Brigham and Women’s Hospital and Harvard Medical School, Boston, MA, USA.

Abstract

Management of chronic pain, such as nerve-injury-induced neuropathic pain associated with diabetic neuropathy, viral infection, and cancer, is a real clinical challenge. Major surgeries, such as breast and thoracic surgery, leg amputation, and coronary artery bypass surgery, also lead to chronic pain in 10-50% of individuals after acute postoperative pain, partly due to surgery-induced nerve injury. Current treatments mainly focus on blocking neurotransmission in the pain pathway and have only resulted in limited success. Ironically, chronic opioid exposure might lead to paradoxical pain. Development of effective therapeutic strategies requires a better understanding of cellular mechanisms underlying the pathogenesis of neuropathic pain. Progress in pain research points to an important role of microglial cells in the development of chronic pain. Spinal cord microglia are strongly activated after nerve injury, surgical incision, and chronic opioid exposure. Increasing evidence suggests that, under all these conditions, the activated microglia not only exhibit increased expression of microglial markers CD 11 b and Iba 1, but also display elevated phosphorylation of p38 mitogen-activated protein kinase. Inhibition of spinal cord p38 has been shown to attenuate neuropathic and postoperative pain, as well as morphine-induced antinociceptive tolerance. Activation of p38 in spinal microglia results in increased synthesis and release of the neurotrophin brain-derived neurotrophic factor and the proinflammatory cytokines interleukin-1β, interleukin-6, and tumor necrosis factor-α. These microglia-released mediators can powerfully modulate spinal cord synaptic transmission, leading to increased excitability of dorsal horn neurons, that is, central sensitization, partly via suppressing inhibitory synaptic transmission. Here, we review studies that support the pronociceptive role of microglia in conditions of neuropathic and postoperative pain and opioid tolerance. We conclude that targeting microglial signaling might lead to more effective treatments for devastating chronic pain after diabetic neuropathy, viral infection, cancer, and major surgeries, partly via improving the analgesic efficacy of opioids.

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^{Original Articles- http://painsandiego.com/2012/01/29/gliopathic-pain-when-neuropathic-pain-treatment-fails/}

Action Alert: Physicians for Responsible Opioid Prescribing (PROP) We must stop this Petition!

Posted by twinklev

October 11, 2012

Greetings!The RSDSA would like to make you aware of a petition currently before the Food and Drug Administration (FDA) that requests labeling changes for opioid analgesics (narcotic pain medications). Since many individuals with CRPS rely on opioids as part of their medication regimen, we wanted to bring this petition to your attention.

The petition, submitted by Physicians for Responsible Opioid Prescribing (PROP), requests three specific changes to opioid analgesic labels:

1- That they no longer be prescribed for “moderate” noncancer pain, but only for “severe” noncancer pain

2- That the maximum allowable dosage per day be equivalent to 100 mg of morphine for noncancer pain

3- That this medication can only be used for a maximum duration of 90 DAYS.

What this petition appears to mandate is a “one size fits all” prescribing mentality which DOES NOT benefit the chronic pain patients in general and CRPS patients in particular.

The RSDSA has chosen to oppose the PROP petition on behalf of you, our members. On Wednesday, October 10th, The RSDSA sent this opposition letter to the FDA. Cick Here to read RSDSA letter .

For those of you who would like to send your own individual response regarding PROP to the FDA, we encourage you to stress the specific details that your medication enables you to do that without it you would be unable to do. We suggest you use the following language to keep the message clear: My name is _______. As a person who suffers with the chronic and yet incurable pain of CRPS, I ask the FDA to deny the PROP petition. I use opioids as prescribed by my physician allowing me to function better and partake in life in ways I would be unable to do without this prescribed care.

To send your comments to the FDA click here.
The category to use for your response is Individual Consumer.

Your immediate action to this issue will make a difference. To read the PROP petition,

click here.

Please forward this email along to your friends and loved ones.

Should you have any questions or would like to receive further information, please email or give me a call.

Sincerely,

Jim Broatch
Executive Vice President and Director
RSDSA
877-662-7737
203-877-3790

Original Article- http://myemail.constantcontact.com/Urgent-Action-Requested–CRPS-Treatment.html?soid=1101383336163&aid=UTz5u591sNA

RSD Advisory- Where Chronic Pain & Depression Collide

We have all been united by a single common denominator and that is… Pain.

Author: twinklev

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