Now I Lay Me Down… (An RSD/CRPS Poem)

Poem Now I Lay Me Down by Twinkle Wood VanFleetThis 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 ThomasChris 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…

 

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Surviving the Fire

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…

 

Surviving the Fire by rsdcrpsfire

and I  hope you are too!

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

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?

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.

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!

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

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!