Saturday, November 29, 2008

Sorry I haven't posted in so long, but....

Hello everyone,

I have been so busy with moving to the country that I haven't had much time to post anything on here and I wanted to let you all know that I will be posting things again starting on Monday....things should be somewhat back to normal by then...hahahahaha.

Who knew moving could be such a hassle?? It totally wears you out...mind, body and spirit!! Especially when you are doing around a holiday (Thanksgiving) and family wanting to coming by to see the new house. Love the company, but wish they would wait a bit longer to come by....selfish isn't it?

Oh well, I better get back to putting things up so it will look a bit more presentable for when the family comes by again this evening. hahahahaha.

I wish you all a very Splendid day and I will chat with you later.

Much Love,
Coach Marla

Tuesday, November 11, 2008

Real Magic for us with RSD!

When disaster strikes, there are no magic words that will make everything all right. For if there were, life would necessarily have to be unbearably empty and shallow in order to accommodate them.

What there is, is the opportunity and the obligation to love as you never have before. What there is, is the stimulus to take life to a higher level.

In your moments of most profound challenge, you are left with only what truly matters. And that is a powerful place to be.

When you are forced to experience life at its worst, it compels you to be your best. You must call upon a level of strength you never before knew was there.

And then, you begin to work through it. As you choose to move forward, life takes on greater, more profound meaning.

Choose to love, and choose to live. That is what you can do, and that is where the real magic will happen.

Sunday, November 9, 2008

RSD Sunday Encouragement

Having It Good!

Do you fully realize how good you have it?
Or do you take all the good and valuable things for granted,focusing on the troubles and disappointments?

Sure,you have problems,and of course there are challenges and difficulties by staying connected to the real, enduring goodness in your life.

Stop for a moment and think of five things in your life for which you can be truly thankful. Then consider what you could do to build and nurture those things, to make them more influential in your thoughts and your actions.

It's easy for the pressing problems of the moment to overwhelm your thinking.
So it's up to you to provide a powerful, positive alternative.

When you have something to be thankful for, you have something real and valuable to go on. You have a solid foundation from which to build.

And no matter where you may be or what may have happened,you do indeed have many things for which you can be truly thankful. The more completely you stay connected to them,the more surely life will move in the direction you desire.

Things To Remember About RSD

RSD DOES spread!

RSD is NOT rare!

RSD WILL NOT burn itself out!

RSD can be caused by even a MINOR injury!


RSD CAN return after you are in remission!

Aggressive Physical Therapy or Activity is NOT in you best interest!

Treatment is NOT the same for each patient!

You CAN have RSD even with a Negative Bone Scan!

You CAN have RSD even if you don't look sick!

Friends and Family WILL have a hard time understanding our pain.

You CAN'T be forced to undergo any treatment you do not want!

There IS HOPE!!

Life might not be what it used to be for us but we can still enjoy it in other ways!

Now, go out there and have yourself the MOST Positive Scavenger Hunt EVER!!

Saturday, November 8, 2008

Another RSD Tip of The Day!

If You Have Had, You Now Have!!

If you have the ability to complain about something, you also have the ability to take the positive action that will make it better. And taking the positive action is infinitely more effective than merely complaining!

If you have cause to get angry, you also can turn the energy of that anger in a positive direction. You can then resolve it better for all concerned.

If you have reason to be frustrated, you also have the motivation necessary to get beyond it. No frustration ever has to continue troubling you!!

If you have experienced disappointment, you also have learned valuable lessons. Look ahead, apply what you have learned, and transform your disappointment into a positive turning point.

If you have known loss and sadness, you also have gained a profound understanding of how very precious life is. Take the opportunity, for which you've paid so dearly, to raise yourself to a whole new level of meaning and fulfillment.

If you face a difficult challenge, you also have the opportunity to grow stronger, more capable, wiser, experienced, and resilient. Embrace those opportunities, for in them you will find the sweet substance of life!!

Courage is not limited to the battlefield or the Indianapolis 500 or bravely catching a thief in your house. The real tests of courage are much quieter. They are the inner tests, like remaining faithful when nobody's looking, like enduring pain when the room is empty, like standing alone when you're misunderstood.

~Charles Swindoll

Friday, November 7, 2008

RSD Tip Of The Day!

Help 'YOU' Feel Better!

When you are feeling down, focus your thoughts on this question:

"What can I do that would help me feel better?"

Instead of filling your mind with doubt, self-pity, resentment, regret, and despair, fill it with thoughts and plans for moving positively forward. There is something that will take your focus off of whatever has already happened and direct your thoughts firmly towards the best of what can be.

Pay no attention to how you are suppose to feel or how you expected to feel. Decide for yourself how good you would like to feel, and then take the steps that will get you there.

It will likely be much easier than you think. Then once you choose to feel better, it quickly begins to happen. It sounds too simple to be true, I know, but it works with surprising and delightful effectiveness. When you decide to help yourself feel will!!

So, What can you do that will help you feel better? You are just moments away from making it happen!

"The very least you can do in your life is to figure out what you hope for. And the most you can do is live inside that hope. Not admire it from a distance but live right in it, under it's roof!"
~Barbara Kingsolver

Wednesday, November 5, 2008

When your pain has no name

Origins of chronic and debilitating pain remain unclear for many sufferers
ABCNews in Chicago By DAN CHILDS

-- Cynthia Toussaint was a ballerina. She was no stranger to the aches, pains and occasional injuries that came with the trade.

So when the pain from an injury to a right hamstring wouldn't subside, Toussaint, then 21, did what she could to endure it. After all, she had auditions to attend -- in particular, a promising role in the musical Fame.

When the burning, unrelenting pain was too much to bear, however, she sought a doctor's opinion.

"I was told that I wouldn't dance for eight weeks and I thought, 'No, they're wrong,'" she recalls.

But the pain would last for much longer than eight weeks. For months it persisted. A year and a half after the pain in her right leg started, she began to experience a similar pain in her left leg. Six and a half years after that, the pain had spread to both arms.

The spread of her condition was not always so gradual. One morning, she woke up to find that her left arm had bent itself into a state of permanent contracture.

"It was so shocking to wake up to find that one of my arms would not unfold anymore," she says.

Today the pain is everywhere. Toussaint describes it as a feeling as if she has "been doused with gasoline and lit on fire... burning from the inside out... It's pain like I never imagined."

The condition which ushered Toussaint into a life of chronic agony also gradually robbed her of her ability to dance, her ability to walk -- and, as it spread to her vocal cords, her ability to talk.

"Here I am 26 years later in a wheelchair," she says. "I had everything; my life was just starting. Suddenly I had this injury that never goes away."

Her voice would eventually return. But for years, Toussaint's battle with chronic pain and loss of function came spiked with the bitter reality that no matter how many doctors she saw, none could give her an accurate diagnosis of her condition.

Worse, without a solid diagnosis, she says many physicians refused to take her case seriously.

"I was told that I was crazy for 13 and a half years," Toussaint says. Once, one of her doctors told her to take a truth serum so she would admit that she was not truly in pain. Another suggested that she was fabricating her pain condition due to stage fright.

And a visit to yet another doctor was met with even greater insensitivity, she recalls.

"I said, 'What should I do?' and he said, 'Shoot yourself in the head.' He thought it was funny."

It was not until a year and a half ago that Toussaint found that she suffered from a mysterious condition known as complex regional pain syndrome (CRPS), alternatively known as reflex sympathetic dystrophy syndrome (RSD). The nature of the condition continues to baffle doctors, as does its exact cause.

But finally, her pain had a name.

"When I got my diagnosis, it couldn't have been worse," Toussaint says. "But it was the happiest day of my life. They could never say I was crazy again."

Patients Battle Pain, Stigma

Toussaint's struggle with her condition turned her into an activist against pain. She launched the nonprofit site For Grace, devoted to helping women find answers about their chronic pain. More recently, she has channeled her crusade against chronic pain conditions into the political realm, making it a centerpiece of her run for a California state congressional seat in 2006 and in other political efforts to bring more attention to these conditions.

It is a success story that stands in stark relief against the lives of those who are still searching for answers to their agony. Michael Smith, associate professor in psychiatry and behavioral sciences at Johns Hopkins University in Baltimore, says that there are a number of pain conditions for which the origins and exact causes are still unknown.

"We're supposed to be this wonderful medical system that can do anything, that can save lives," Smith says. "But we really don't know enough about pain."

"It is often difficult to come up with a diagnosis for a patient with chronic pain in particular," agrees Dr. Paul Christo, director of the Multidisciplinary Pain Fellowship at the Johns Hopkins School of Medicine. "Sometimes these types of pain do have names, but we still don't understand the exact mechanisms of the pain."

And because chronic pain is often misunderstood, many patients go without the treatment they need. This, in itself is a problem; untreated, chronic pain conditions can actually worsen, recruiting more nerves until the pain spreads throughout the body.

Dr. Doris Cope, director of the Pain Medicine Program at the University of Pittsburgh Medical Center, says that this spread is often ignored -- particularly in the absence of a proper diagnosis.

"Some doctors say, 'Oh, there's nothing wrong with you,'" she says. "Meanwhile there is pain."

Still, patients may find themselves swept into dismissing their conditions as well.

"First of all they begin to doubt it themselves," Cope says. "Secondly, they get the feeling of helplessness and hopelessness. They don't know what's happening."

Worse, for these sufferers chronic pain has not only a physical component but an emotional one as well. As the pain spreads, the same chemical signals involved in depression, anxiety and stress also come into play, commencing a symphony of physical and emotional misery for the chronic pain patient.

"For many people, their pain takes over their entire life. It affects their work life, their family life, their social life," Cope says.

It is a personal tragedy to which Toussaint can attest.

"It destroyed every relationship in my life except for my relationship with my partner, John," she says. "He stood by me, but my entire family left me behind.

"The emotional pain becomes more serious than the physical pain."

Chronic Pain, Depression Closely Linked

Little surprise, then, that chronic pain is regularly tied to depression.

"Imagine that you develop chronic pain and in time you are no longer able to work," Christo says. "That can be very disruptive and lead to a loss of self-esteem and self-worth. At the same time, it can change the nature of your relationship with your family and friends.

"If the patient has lost their sense of self-worth and become depressed, that in turn can lead to social isolation."

Smith agrees. "[Patients] get the feeling that they really can't control the pain; they feel helpless about it... In some cases these patients can go to full-blown clinical depression."

The roots of this depression even appear to transcend emotions alone. On Monday, scientists revealed additional biological clues as to why pain and depression may be so closely linked. A team of researchers led by Irina Strigo of the University of California San Diego compared brain scans of people with depression to those of 15 people who were not depressed while these subjects anticipated or experienced a painful sensation.

What the researchers found was that those with depression showed a higher level of activity in the areas of their brain that processed emotions. Moreover, the regions of the brain that are normally involved in mitigating pain were less active in the depressed subjects -- a hint that chronic pain may have a propensity to feedback on itself.

Toussaint says the depression that accompanied her chronic pain was nearly too much for her to bear.

"I suffered very, very extreme depression," she says. "All of us with pain do. We're being tortured 24/7, we're not believed, and our lives are upside-down.

"I had a plan of suicide -- not because of the physical pain but because everyone I knew had abandoned me."

Fighting the Pain

Fortunately, pain experts say, the majority of those battling mysterious chronic pain can find answers if they search long enough.

"Most pain does have a label," Cope says. "If you can find some general idea of what's causing your pain, you can tailor treatment toward that."

"A lot of people don't realize that there are treatments available," Christo says. "We do have some pretty reasonable treatments for people that can help control the pain and increase quality of life."

As for the best way to access these resources, Christo says pain sufferers can start with a simple Internet search, using their symptoms as search terms.

"What will usually come up is a description of the condition, and sometimes a directory of self-help groups," he says, adding that some support Web sites even have suggestions for doctor referrals.

For those who have found themselves being pinballed from one doctor to the next, finding a multidisciplinary pain management center may be the best step. Here, patients can afford themselves an entire spectrum of care services -- from pain physicians and physical therapists, to psychiatrists trained in helping those with chronic pain come to deal with their conditions.

"Medication, injections, physical therapy and pain psychology all can come together to significantly improve quality of life," Christo says.

For Toussaint, the medicine that worked best was the anti-seizure drug Neurontin. Today, this medication, combined with a physical therapy regimen that incorporates Eastern and Western healing techniques, allows her to control the pain brought about by her condition.

As is the case with some who face chronic pain, Toussaint may live with her condition for the rest of her life. But she says that those who face a similar struggle must take heart that an answer exists for their mysterious pain.

"Know that you're not alone," she says. "Know that you're pain is real. And know that you deserve the dignity of proper diagnosis and treatment."

To visit the For Grace website, click here.

(Copyright ©2008 ABC News Internet Ventures.)
11-05-08 Chicago News

Sunday, November 2, 2008

Kreativ Blogger Award

I was given this award by a Megan from "Free My Brain From Migraine Pain" Megan coaches migraineurs and people with chronic illness in living purposeful lives, as well as working with small business owners to grow their businesses. Everyone suffering with migraines would be missing an amazing lady if you didn't check out her website!

Now, according to the rules of accepting the Kreativ Blogger Award I am to list six things that make me happy and pass this award on to six others.

So with no further are six things that make me happy:

1. Spending time with God!
2. My loving husband and family!
3. Helping others find the beauty in life!
4. My Radio Show!
5. My Grandchildren ALWAYS makes me smile!
6. All those I get to connect online!!

Now, who am I passing this award onto?
Let me tell you:

1. Coach A. of Life Trekking Coach
2. Jeisea of CRPS/RSD A Better Life
3. Bonnie Mechelle of Healthy Living and Weight Loss
4. Marguerite of Mother Knows Best
5. Laura and Kate of Teach Me To Talk
6. Crystal of Laugh At Cancer

I wish each and every one of you the best of luck and continued success in your life! I appreciate you ALL!! I hope you all check out their websites....You'll be glad you did!!

Oh...I almost forgot to post the award, silly me.
Drum Roll Please......

Thank You Megan!!

RSD Awareness Month!!

Tomorrow I will start posting bits of information for those of us who are living with RSD (Reflex Sympathetic Dystrophy) and for those who are our caregivers to better understand some of what we go through every second, of every minute, of every hour, of every day!! Hopefully I won't scare too many people away, but if I do, I do apologize, is our daily life and needs to be heard!! We all have different stories to tell and we all deserve our VOICES TO BE HEARD!!

Speaking of being heard....I invite each and everyone of you every Tuesday at 1:00pm CST this month to my Live Radio Show where we will be sharing stories, tips, information, and our VOICES!! So, if you are a person living with RSD, please join us!! If you are a caregiver of someone living with RSD, please join us as well, because this is also National Caregivers Month!! How much better could it get?

I encourage each and every one of you to take some time out of your day on Tuesday's and let YOUR Voice be heard!!

Link to Show:
If you register for free, you will be able to chat with others in the chat room that is going on at the same time the show is live. There is also a call in number listed that you will be able to put YOUR Voice to the cause of RSD Awareness!!