articles

Dear 12-Year-Old Me

Wed, 14 Dec 2011 05:52:45 +0100

This is a wonderful letter written by Alisa Lipscombe who is Fellow Advocate,and RSD Angel.

Dear twelve-year-old me,

Right now, life is pretty good for you. You've just started High School. You're the Form Captain for your class. You got into the audition-only choir at school. You're in concert band and orchestra playing tenor saxophone, and you were just selected to be the solo singer at the School Easter service. If I remember rightly, your favorite show is The O.C currently and every morning you head to the gym with Mum before walking up to school. Every day is hectic - you're running around from one rehearsal to the next, texting your friends frantically as you hurry around the school. Yeah, right now, life is great.

But on April 15th that's about to change. You're going to fall over at the school bus stop and hurt your ankle. Yep, in front of EVERYBODY. But don't be embarrassed. Everyone is really nice to you and they look after you as you wait for the ambulance. The next few months are going to be pretty tough. You'll go to lots of appointments, where most doctors aren't going to believe you when you say how much pain you are in. But the pain is real. So don't let anybody tell you otherwise. You will be diagnosed with CRPS (Complex Regional Pain Syndrome) 8 months later, which is an incurable nerve condition that leaves you in excruciating pain 24/7.

From now on you're going to rely on crutches and a wheelchair to get around. At first, it will be hard because everyone stares at you, but keep your chin up - people stop staring so much after awhile. School stops being as fun as it was at the beginning. Your friends are going to leave you now that you're "weird" and sick. But next year, you're going to meet some amazing people who will still be your friends for years to come. I know it's cliche to say "it gets better" but it truly does. So please, don't give up hope. Just keep studying and never stop singing. Music will save your life countless times in the coming years.

In 2007, you're going to fall into a coma and nearly die. It's going to be one of the scariest experiences for you and your family, but don't worry. You're going to wake up and you'll be ok. From here on in, you're going to spend a lot of time in hospital, and you'll get to know the nurses really well. Make the most of it - befriend the other patients, and try your hardest to bring a smile to someone Else's face every day. You can't change where you are, but you can change how you deal with the situation. You'll be sick of hospital food by your 6th week as an inpatient, but Eryn will come in and swap "real" food for your hospital meals. Remember to thank her. Rehab is going to suck. You're going to hate the phrase "No pain, no gain" and want to scream every time a physio or doctor says it to you. Please don't get too mad. They are just trying to help.

When your CRPS starts to spread, you're going to be scared. That's ok. You're allowed to be scared, and crying is not a sign of weakness. It's a sign that you've been strong for too long. So cry. Let it out. And remember you're not alone. You're going to meet some of the most amazing people because of this disease. You'll make friends with other patients here in New Zealand, as well as those living in California, New Jersey, Canada, Israel, Australia, to name but a few. These people are going to help you survive each day. They understand what you're going through and when it feels like nobody else "gets" this pain, they do. So never forget that.

If I had any advice for you, it's enjoy these last few months of normality. Enjoy playing your saxophone. In 2008 when you stop being able to play it, you're going to miss it more than words can say. Appreciate every step you take without pain, and please try to remember this feeling. I can't. Every time you see something beautiful, stop and soak it up. In 2009 when your CRPS moves into your eyes and you start to lose your vision, you'll miss not seeing the ocean sparkle or your cat rolling about in the sun. When you get that Merit next year in your exams, don't cry. Hold onto the fact that you got 25 other Excellence's. Remember that it's OK to say you're not OK. So ask for help when you need it.

When you're diagnosed it's going to seem like the end of your life. But it's not. It's just the start of a new life you didn't imagine you'd be living. But trust in God, trust yourself and your own strength, and keep on keeping on. You'll be ok. Trust me.

Love,

Your Future Self.

~IMPORTANT~ ALL RSD ANGELS PLEASE READ!~

Tue, 15 Nov 2011 18:31:31 +0100

My dearest of RSD Angels.

It has come to our attention that yet again there is an abundance of argument, slander, gossip, and general hate against each other within the RSD Angel Community.

We wrote a note similar to this one back in Feb. of 2010 and again a couple years later we are having to write the same exact thing.

When we made this Awareness Group and Fan Page we never would have believed we would hear that our wonderful Angels were fighting among themselves.

We deal with horrific pain everyday. Wouldn't we want happiness in our life? You are the only one that can control what you say and do!

We hoped not to have to write a note about this topic, again. But apparently some people need to be reminded that WE ARE ALL in horrid gut wrenching searing pain 24/7.

When you are an RSD Angel you need to think of all of the RSD Angels. We are fighting for each and every one of us to someday have a cure. Not just one!

This isn't a one person fight or dream. It takes team work, and who can work as a team when we are divided?

If we are allowing ourselves to be catty or go around spreading lies that is making our fight for a cure and awareness of RSD/CRPS that much harder. Instead of taking that much needed 2 steps forward we have brought ourselves 10 feet back.

I don't care who started any of the gossiping, slander, or hate, I want it to end here and now.

We are equal, not one of us is more important then the other and we all deserve one thing, respect. We are not children, so please let us not act like one. We need to build each other up and remember that we are hear to put a real face to RSD/CRPS and make people aware how it really effects us. That we are not some crazy crack pots that are looking for a hand out or narcotics or sympathy.

Prove to them that we are real patients, suffering from a, currently incurable, disease. If we continue down this path of self destruction to ourselves and our fellow RSD Angels then what will that bring us? Nothing but more pain and anguish.

As for me I choose to build up the RSD Angel Community. Please help us do that, and support a fellow RSD Angel today and stop fighting, please?

Let us stand up and say we are RSD Angels we walk through fire, hell, and brimstone everyday and we still are here. We still are smiling. We are victorious and we will overcome RSD/CRPS! Now Who is going to join me and put aside everything else and fight against our only common foe..........RSD/CRPS!

HUGS and Low Pain Wishes!

The RSD/CRPS Doesn't Own Me Staff

Living unwell in a well world - Coming to terms with RSD - By Kylee Black

Wed, 09 Nov 2011 18:58:00 +0100

RSD spreads in up to 80 percent of cases with only 8 percent of these cases being full body or systemic. (Lucky me being in the 8% huh?? Jokes!)

I've been working and pondering over this for a while now...Well, it was more just thought, but I thought I'd share it none the less since I say I'm all about being real and honest and since this is my space for chatting and getting my thoughts and pondering's out I thought I would....... Hopefully it makes sense..

See this is a strange journey filled with many twists and turns and ups and downs... Of course really I've just described life for each one of us in a nutshell.... Sometimes though.... It appears... Different... In some form.... Somehow lines aren't as clear cut anymore, like when you start dealing in chronic illness, which is, lets face it, is exactly what RSD is... To add to that point its INVISIBLE ILLNESS!!!!!!!!!!!! Which can be so much harder to deal.....

And here's my delima.... How do you deal?? How do you figure it out? When sick doesn't equal flu, function doesn't equal wellness and a smile doesn't mean I'm pain free?? Where are those lines that have somehow been etched away? Where does one start and the next begin?? How do I present myself? How do I fit into the worlds ideals and concepts? Or do I even bother??? How do I learn to function in a well world??

I sent this email to a friend who has suffered CRPS/RSD for quite a long time and with permission wanted to share some of her thoughts with you too ...... Her responses to my struggles and pondering's... Shes sooo darn right! Maybe it will shed light for others too....... Bring some understanding to how you deal with this stupid disease............. (Written in colour so you know which is which)

"How do we learn to function in a well world… How do you function in an unwell world in a manner that others will understand… If I had the answer to that life would be infinitely easier. Personally I function by being purely and simply bloody minded and pig headed and by laughing at myself and the bizarre world I now live in. Why do I bother?? Because it makes me feel ‘normal’, or at least what I think normal should be…. What I vaguely remember normal to have been but its been so long that my view may be a little skewed now. I smile because I can and if I don't I'm afraid I never will again. I laugh because I can and sometimes it’s all I can do to stop from crying. The absurdity of it all can be overwhelming and sometime you just got to laugh.I cry when no one is watching, so they don’t know how much of an act I put up. Sometimes I cry with others who actually know, because they are crying too.I cry tears of pain, anguish, grief for what I’ve lost and desperation. Tears are healing… snot nose ministry. How do I function in a well world…. Some days I don’t!""

People look at you and see a smile and a clear face (covered in acne but that's a side issue) and think things are well not knowing you spend hours before and after to prepare yourself in a manner that shows you somewhat decent... That you put on a mask as soon as someone enters the room to show you are OK, and it happens without you even realizing it, yet they leave and you fall back into a deep breath to pick yourself up again.......

RSD has I think five different fingers to the disease... Function, pain, brain, autonomic symptoms, and sympathetic nervous symptoms...... They are all connected to each other yet at the same time also all very separate... Improvement on one level doesn't equal improvement on another just as set back in one doesn't necessarily equal set back in another... Of course sometimes you get thrown a tail spin and you fall flat back in every area... But I digress...

See... There is a level on which I find myself struggling... And I'm being very honest here because its in no way reflective to anyone - its just the world we live in - its me coming to terms with RSD in the world I'm trying to re adapt to... In a normal world, in normal settings as people understand things to be function = improvement, and in fact it is! One I'm truly thankful for but function would also appear to mean I'm getting better and this is where the hiccup happens...... This is where all of a sudden the lines in ease of understanding disappear in RSD.... Its so far from the truth.. And yet it spins even my head out to understand this........ How can I be regaining function on some level when I'm not doing well in others?? When I am struggling with my body?? When its soo flipping complicated? And here's what it boiled down to.... Here's where I'm stuck........

How do I respond to people when they tell me I'm looking soo well or getting soo much better all the time - that I'm on the up and narrow now when I feel like I do?? Smile politely and say thank-you? Nod my head and agree? Cant you see how Ill I feel??", "Cant you see my legs burning like flames???", "Don't you know how hard I work to put a smile on and appear like I'm normal??" , "Don't you see the price I pay for this chance encounter?" Why do I look sooo well when I feel so crap inside or I know what the price will be that once I stop I will crash hard............

Of course this isn't about sympathy, and it isn't about vying for attention either.... Its simply getting my head round adapting to an invisible illness that's barely heard of let alone understood..... I'm crazy lucky to have supportive friends and family who have been willing to learn, read and try to understand... But its still an insanely ridiculous ride! Being bed ridden or caregiver dependant is one thing.... I think easier for people to "get it", but the more function I fight back for the harder I realize in other areas it will be....... What do you do when function is only a co part of RSD??

Do you know most RSD sufferers are able to fight for most of their function back yet they are all still fighting no less of a journey? Your body learns to adapt and it also come to terms with the high level of pain... You learn to push on stubbornly in spite of..... You learn to put on a mask as you walk (hobble or roll) out the door that hides the suffering and how you really feel... You surprise yourself at how well you can present yourself given enough time, preparation and make up... You learn to adapt to the feeling of walking or standing on broken bones, you learn to hide the pain, you know when to leave and hide away and yet you crave and cry for more of a chance to live life as easily as others........ To go out without a second thought and not have to worry about concern for pay back..... You know you will have good days, better days and bad days, your better months and worse... There will be days you can not get out of bed of lift your head and days you function with the ability to get out and about... I liked what my friend said...

"Function is what you make it! Today it is movement, tomorrow it may be the ability to roll over in bed, next week it might be the pool, the week later, the ability to smile and lift a finger… And I never know day to day or hour to hour what it will be… that’s the guessing game that is RSD.

Pain.

It never leaves me.

Sorry to burst your bubble.

I know people in remission, it has never been me. … The cause of depression, anger and envy.
I’ve had good months but its always there, nagging away, grinding at your will, but its always there in some form or another and it is EXHAUSTING.

Unless you’ve been there you will never understand so don’t expect others to. They might think they do, but they can’t even begin to grasp how all encompassing it is.They see pain as a scrape or a muscle strain. They can’t understand being on fire, touch equalling pain, movement, no matter how minor being agony. They can’t. Save yourself the torment and accept that they can’t understand.

Brain…

Well mine checked out years ago, its one of the more frustrating things to deal with. Why can’t I do today that which I found easy yesterday. Why can’t I even remember yesterday?

Autonomic response...
I can’t fathom, I want to know more, but when the best in the world can’t explain it how am I to understand how surgery to my left ankle now affects my temperature regulation in my ENTIRE body? I’ve studied neurobiology and I still don’t get it. I just don’t. I understand the theory but not how that converts to what I experience. There is so much I want to understand, so much I want to know, but short of a massive research grant and some PhD students to do the work for me, I will have to rely on the work of others…

And when they (all the different fingers of RSD) all crash at once it feels like you are dying, here and now. (Seriously true!). Some days its ok to admit I DON’T GET THIS, and roll over, pull the covers up over your head and admit defeat. Metaphorically just walk away. You don’t have to understand it to know its really happening to you.

I remember in the first couple of years thinking that if I just pinched myself hard enough I would wake up to find its all just a bad nightmare. Yes, it’s a nightmare all right, but I’m not going to wake up anytime soon. I might as well accept that this is what it is and I CAN FIGHT, I will never be the same, but God willing, I will come out the other side a bigger and better model and, by God, I’ll have one hell of a testimony."

Does it matter what people think?? Probably not.... But comments hurt and sting all the same don't they?.... Maybe I'm to vulnerable? Maybe its still to raw? Maybe I'll learn to brush things off without a second thought...Those both said in love and in spite.......... I don't want to be a sick person... I don't want to have this as my deal.... Yet at the same time there's a level of acceptance I have to come to before I can really move on but with still a sense of hope and deep belief for healing........................

Sooo lucky to have others that actually get it and understand! People that are further down this track then me... It sure is a mind full........ I am seeing benefits of Ketamine and can nearly take a hobble step... One step at a time while I continue to get my head around everything and do what I can to keep making steps forward ---- And that's without any help or support through PT, OT, rehab........ I think that's pretty cool!

Love Kylee xx

"Excuse me? Can you Move?" A Hilarious List of Answers from a Disabled Person

Tue, 08 Nov 2011 18:53:27 +0100

So a while back my mom and I went to see a movie! This was a big deal for me and caused a great deal of pain. We found good seats in the first row with the railing in front so i could prop up my leg and I have an extra seat so I can stretch my leg out when it spasms. My mother was on my bad side a seat over and I had left a seat open and I put my RSD Leg up on it so it doesn't get hit. This man came in late and wanted mom to move over so he and his wife could sit down. I perked up and told him why this wasn't able to happen. "I have Chronic Pain," I said, "and I need the extra seat so I don't get hit and cause more pain then I am already in." He gave me a funny look and somewhat sarcastically said, "Excuse me, I am so sorry." He then walked back to his wife and said loudly, "We can't sit there, she has Chronic Pain...." I got to talking with my mom on this topic and we decided to write up a list of other things to say, since "Chronic Pain" is apparently a foreign Phrase in the English Dialect.

1.)"This seat is reserved for my Imaginary Friend. I'll move but she's gonna be pissed!"

2.)"I have a communicable disease and you would not be safe."

3.)"The Little Man who lives in my toe is a trained Killer and will bite on command!"

4.)"As long as you don't mind if I cuddle. One of my multiple personalities is a tramp."

5.)"You'll have to ask my master, she keeps me on a short leash and has an itchy trigger finger."

6.)"I am afraid this seat is taken as is every other seat, by my bum leg."

7.)" You can't have this seat, because the British are coming!"

8.)"I'm sorry! I licked it and it's MINE!"

9.)"As long as you don't mind a wet bottom. My friend pee'd before leaving."

10.) "The last man who sat here turned to stone, wanna try?"

11.)"See this cane? Its actually a cattle prod! Wanna ask again?"

12.)"I always save a seat for Hulk Hogan. I invited him to the movies, and he said we should do that sometime."

13.)"You could sit here but that would be against my restraining order."

14.)" Are you blind? The white rabbits own everything!"

15.)(Put hands over ears and rock back and forth) "Doctor said if you ignore the voices, they will go away!"

16.)"Have we been formally introduced? I never oblige complete strangers."

17.)"Wanna see my death glare? Just ask again!"

18.)" I don't understand but anyone who sits next to me suddenly becomes suicidal."

19.)"Would you mind dying a slow and ignominious death?"

20.)"I duck-taped a troll under this seat and he already looks angry!"

21.)" The Who's are on a speck of dust on this chair. A Persons a Person No Matter How Small!"

22.)"You are going to embarrass and offend my son, he is already sitting there!"

23.)"That spot is reserved for my seeing eye dog, should I ever go blind."

24.)"NO! NO NO NO NO! I'VE ALREADY MOVED TWICE!"

25.)"I'll move down as soon as you develop a debilitating neurological disease that causes you to swell and burn with each touch or movement. Oh! Wait.....that's me!"

I hope this list made you smile but also made you think about how some people need to be educated on the importance on the subject of chronic pain and RSD/CRPS and how it effects those that have it.

Share and Link this on your facebook and let your friends have a laugh and them encourage them to learn more about RSD/CRPS

A Letter To Those That Don't Believe

Tue, 08 Nov 2011 06:40:29 +0100

Some members have asked me to re-post this.

I wrote this for a member and friend of mine because someone was harassing them because they didn't believe in RSD/CRPS.

You can use this and take out my experience and add in your own. Never let someone make your feel bad for something that you cannot help. Do not hate yourself just because you have RSD/CRPS, you are a wonderful person and deserve love.

If you need to talk to someone or feel lonely, and like no one understands please email us at rsdcrps@gmail.com

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

To whom it may concern,

I am the Founder and Creator of RSD/CRPS Doesn't Own Me Online and on Facebook. I found out today that you both do not believe that RSD and other Chronic Pain are true conditions. There are Millions of people who have rightfully been diagnosed with RSD/CRPS. Why? Because they are in horrid grueling pain 24/7. Now I understand you think that we say we are in pain because all we want is a disability check. That is not true. Imagine not only being in pain but having to hire a lawyer to handle your case. For me mine is a workman's comp case. Your life is no longer your own. I was extremely young, 19, when I was working and a 1/2 ton metal cart ran into the back of my left ankle causing a major injury. Soon after I started having burning pain that was more extreme than the pain I would associate with a severed ligament. No one could touch my leg and ankle. I couldn't walk, I couldn't sleep, nothing would cease this horrid burning within my own body. I wished it would stop. Soon I had to start the Workman's Comp process. This has been the worst and most humiliating thing I have ever dealt with in my life. I did not choose to be a part of it. I had to because my employer paid for my medical visit. Once they do that you cannot get out till your condition is better. Well it didn't it got worse. My ankle kept swelling and swelling. I had major Allodynia and major Edema. I lost all of my hopes and dreams in front of me. Doctors gave me no hope. The worst thing was the people I had always counted on. The ones I thought cared about me or any part of my family started calling me a liar. I wish I knew why people are compelled to call us liars just because they cannot see, touch, or feel what we are going through. You cannot see, touch, or feel the sun at night but because it reflects off the moon you still know that it is there. Why is this any different. Just because you can't see, touch, or feel our pain doesn't make the swelling, the color changes, the abnormal hair growth and nail growth go away. To belittle someone because you yourself are not going through these trails does NOT give you the right to call them a liar.

Till you have had to sit in your room in the dark, crying, not able to breath because the slightest movement will cause your pain to flare higher then it already is. You cannot say you truly understand Chronic Pain. To have your body lie to you and say that your veins have been drained of blood, refilled with Lighter Fluid, lit on fire, wrapped in barbed wire, and then placed on a BBQ Grill you will never empathize. Until you put aside your own pride that is causing you emotional pain you will never be close enough to an RSD Angel to help them. We don't need judgements, hateful stares, and words said harshly under one's breath. We NEED Love, compassion, understanding, support! If you aren't doing those things you are nothing but another branding iron upon the millions that are already piercing our skin. So I would like you to look into your heart. Seriously think, in the future when someone asks you, "Why didn't you believe in their RSD/CRPS?" You better know that you are not only hurting the person with RSD/CRPS, you are also causing a world of hurt to yourself. You never know how your not believing can effect the person with it. If you have a shred of decency inside you, you would swallow your pride and apologize and then educate yourself on RSD/CRPS and help us in our venture to find a cure. So that we can help someone's future daughter or son from living the rest of their life with 24/7 360 degree pain.

Thank you for you time.

Review of "Choosing to Choose" by Dr. Tony Robbins

Sun, 06 Nov 2011 02:59:00 +0100

We do not usually do reviews on non-RSD/CRPS related books but this is one exception I could not pass up.

This book moved me to write a review and also tie it into RSD/CRPS as well. So please bear with me.

The title of the book is Choosing to Choose by Dr. Tony Robbins.
Everything we do boils down to choice. We choose to be happy, sad, angry, and everything in between. In fact in the Declaration of Independence it is mentioned twice.
The pursuit of happiness. People give up so much just so they are happy. Only to find out that they are depressed and lost. As the book states, “ We leave our Spouse, our jobs, our churches, and abort babies all in the pursuit of happiness."
But what happens when things don’t go right. What happens when everything in our life seems to go pear-shaped.
These are called storms.
In one of the chapters which became my favorite the Author speaks of three different types of storms.

The first type of storm the author uses the example of the Bible Story of Jonah. God told Jonah to go and preach to the people of Nineveh. Now here is a bit of back ground about these people. The people of Nineveh and Jonah’s people were sworn enemies. They thought they were hateful, mean, and down right nasty people. Jonah probably thought, “Why should I do this? These people aren’t worth my time. They aren’t going to listen. It’s just too hard.” So instead of listening to God, Jonah ran away, and ran straight into a storm.

This goes together not only sharing the Gospel with your Fellow RSD Angels but also spreading RSD/CRPS Awareness with people that don’t understand what RSD/CRPS is. You probably have said something like this, “Why should I do it? These person isn’t worth my time. They aren’t going to Listen. It’s just too hard,” and the ever popular, “It will just cause me to flare. I am just as guilty as the next person. Sometimes I wonder if it makes a difference if I share the Gospel to others or spread awareness about RSD/CRPS. It does. The future holds so much more then we can imagine someday we will understand it all but instead of running away we must face what is in front of us. How can we help not only our fellow man but our fellow RSD Angel.

The Second type of storm used is the type that brings us closer to God.
I am going to give a bit of my Testimony for a minute, please bear with me.
I was raised in a Christian Family, went to Church almost every Sunday and almost every Wednesday, I graduated from a Christian High School, and even went to a Christian College before my accident. Did that make me a Christian? Actually no.
It wasn’t till after I got RSD/CRPS that I began to seek God. Yes for a time I sat there and asked “Why Me?” but after the rage and the anger melted I began to learn who I was again. Where I stood in the world. It truly was like being reborn in a sense. I realized how self-obsessed I had been and how I did nothing to benefit my fellow man. I just walked through the world head down but all the while saying, “What can I get out of this?” I began seeking Him and finding my life getting better. Not only because I was now truly a Christian for the first time in my life but because I had true happiness.
I was worth something in His eyes. Therefore I picked myself up and after 5 months of being bedridden began to learn how to walk again. At one year I was in and out of a wheelchair and using a walker in the house. Now here at almost 4 years later, I am walking sometimes with the assistance of a cane but most of the time without. I went from being able to do nothing but sit and cry in pain to now working, and being married to the most amazing man I have ever met.
Yes, I am in the same amount of pain that I was in 4 years ago. It is how I allow it to effect me that makes the difference. It is all about choice.

The last and final type of storm they give is that of the “Example Storm.” This, sometimes, in my opinion is tied with the 2nd type.
Sometimes we have storms in our lives so that other people may see that life is still worth living. I always say and if you have been a member of RSD/CRPS Doesn’t Own Me long enough I have said “There is life after diagnosis.”
How are you going to live your life? Is it going to be a good example and show not only the world but other RSD Angels that there is hope? Or are you going to go home and say “Woe is me, have pity on my life because it sucks.” Which do you think people are going to not only react positively to but also might change someone’s life. The simple act of praying with a RSD Angel friend or sharing your story with a friend who doesn’t know about RSD/CRPS. These are the things that make the storm pass easier.

There are so many blessings in your life. Check out this book to read more in depth.
It surely changed my view on a few things. The whole book is filled with amazing stories, and it makes you think, laugh, and being the silly woman I am sometimes cry when it hit home.

If you find this to not be your style that is fine and that is your choice. We wanted to share it because we felt it was something we stood for and were happy to share with others.

I leave you with this.

“God has given each of us the power to overcome the world and the power is choice. How we use that power is determines our path in life. The responsibility is ours and ours alone. We must be willing to make the choices that transform our lives. We must choose to see life as an opportunity for service and not just an existence. We must stop barely surviving and learn to grow by choosing to choose.” -Dr Tony Robbins.

Choosing to Choose is available for purchase:

Dustjacker Publishing:
www.dustjacketshop.com/Choosing-to-Choose-Author-Dr-Tony-Robbins-choosing.htm -Book

www.dustjacketshop.com/Choosing-to-Choose-eBook-Author-Dr-Tony-Robbins-choosingebook.htm
E-book

Amazon:
http://www.amazon.com/Choosing-Choose-Practical-Living-Christian/dp/0983664846/ref=sr_1_1?ie=UTF8&qid=1320547731&sr=8-1

For Kindle- http://www.amazon.com/Choosing-Choose-Practical-Christian-ebook/dp/B005XQDJDQ/ref=sr_1_2?ie=UTF8&qid=1320547731&sr=8-2

RSD/CRPS Awareness Month

Mon, 31 Oct 2011 02:38:31 +0100

Hello RSD Angels!

Tuesday November 1st is the beginning of RSD/CRPS Awareness Month.

This month is very important.

You may be asking yourself why is it important and why does it matter?

Remember back when you first found out you had RSD?

For a lot of you it it probably went a little like this:

Doctor/Medical Professional: "You have RSD...."

You: RSD? What is the World is that?"

Imagine if just by spreading awareness this wouldn't happen to someone in the future. Imagine if they had found out day one that they had it? Imagine if the Doctor's were aware of the early actions that help progress into remission?

Imagine one day having a cure!

How can you spread awareness?

This month we will be sharing RSD/CRPS Facts and Articles that help spread awareness. You can share these article and talk to your family and friends which is a great place to start. Ignorance isn't bliss, and yes it will be the hardest thing you will ever had to do, but trust me it is worth the hard work even if it doesn't work.

Also we are asking everyone to please post a picture that is related to RSD/CRPS such as these.....

One Idea we also had was each day of the month of November as your status, post 5 things about yourself that you are proud of. It can be anything. Little or small. Even if it is sitting up to get on the computer, that is amazing cause it allowed you to join us here today!

Another Idea that we had was this.....

Our Founder has been seeing people doing these "We are the 99%" posters. It sparked an idea to post pictures next to poster boards of things who make us...Us. The world may label us "Disabled","Handicapped","Insane", "Needy", or a number of different stamps that the world makes. Let us show the world the things we are made of and what is about us that we are proud of. State the facts and do not hide it.

The Picture is by one of our Founders, Christa Whightsel and it states as follows....

"I am Christa Whightsel.

I live with pain 24/7 365.

I am a Wife, Daughter, Sister, Aunt, Cousin, Caretaker, Founder, Friend, Dreamer, Artist, Baker, Creative, Outgoing, Loving, Hopeful, A Christian, Generous, Funny, Joyful, Loving, Confident, and Talented!

I am an RSD Angel!

Ask About Reflex Sympathetic Dystrophy Today!

RSD/CRPS Awareness Month www.rsdcrpsdoesntownme.com"

We now challenge each and everyone of you to not be afraid. Spread Awareness World Wide. You have nothing to lose. If people want to judge and choose not to understand, then move on. Find the people that do care. It may be hard but you deserve love. You are an amazing, courageous Human Being, and don't allow yourself to believe you are anything less then amazing.

Now I end with this. If you got nothing till now walk away with this. There is life after Diagnosis, and this is only the beginning of an amazing new journey. You only have to start it!

Love and Gentle Hugs,

The RSD/CRPS Doesn't Own Me Staff.

SSD/SSI

Sat, 09 Jul 2011 04:24:30 +0100

Hi to all of you as I am going to do my best in giving you information on various insurance help and information. Please feel free to ask questions and I will do my best to answer them and/or research it for you. I worked many years as a Medical Insurance Specialist and for a variety of doctors including Pain Management which became my specialty as I was diagnosed with RSD in 1995. I will start with some clarifications of different insurance and money help for the various companies. I will also do my best to give you web sites you can go to for further information to each statement I make. Please note this is just information and it is your decision how to follow up or do which you chose is best for you.

Social Security Disability, SSD is for those of you who have worked and paid into the system. You must meet qualifications of certain amounts of time paid into the system to obtain SSD. You must file first on your own. Most of you especially of younger ages will more than likely be denied the first go around and especially with our governments financial situation. My recommendation is after you get that denial to get an attorney right away! It is your right to obtain an attorney and they are the ones that will help you get your SSD. Look for a local attorney who will only accept payment if you win. They will get a portion of your lump sum which when you win you are paid back to the date of original file which is a large sum usually. It also helps you to have and keep all records and radiology or other testing for your records and can save you some time and money to take them with you to your first appointment with an attorney as this can save you time and money. If you chose to do this without an attorney you are more likely to be denied. There is a time limit of 1 year to file for SSD and you must not work during this time. I know it can be hard as I myself had to fight for 1 year for my SSD benefits. You can also apply for SSD after your Workers Compensation starts paying you or is settled. After you are approved for SSD it takes 2 years for Medicare to kick in. Also apply for SSI at the same time things to depend on how much you made during your work time and payment they will pay out. I myself make too much from my SSD to qualify for SSI. http://socialsecurity.gov/pgm/disability.htm

Social Security Income, SSI is for those who have NOT worked or receive such a small amount from SSD that you may qualify for SSI also. SSI does vary according to the State you live in. Different states pay more others less. You may qualify for this help for a child you have under your care when you do not have enough funds to help pay for everything. It all depends on income coming into your household as a whole. If you need medical help you should qualify for State Medicaid/Medical. http://socialsecurity.gov/pgm/ssi.htm

Social Services, SS is another line of help in all states. This is for immediate help only. You can get medical help indefinitely depending on household income as a whole but is free insurance and medication help. Most states use this through their county facilities. To find the information type in your URL for Social Services and the state you live in. For example I would type Social Services Nevada. They also have other help for you like help with your rent and utilities. SS works off of government grants which come in frequently and you must ask about when they will receive more funds if they say there are none available as they will not offer the information.

I hope this is a start to help for some of you and will be working on additional Insurance information and help. Please remember I am doing this for information to help you and in the end it is your decision how and what help you obtain.

Glial Cells & Pain

Wed, 25 May 2011 05:07:06 +0100

What are Glial cells?

According to About.com "Glial cells are non-neural cells that perform "housekeeper" functions such as clearing out debris and excess materials. Glial cells support neurons by providing support and nutrition. There are several different types of glial cells: astrocytes, oligodendrocytes, microglia, ependymal cells, radial glial, satellite cells and schwann cells. It is estimated that there are 10 to 50 times more glial cells than there are neurons in the brain."

According to Dr. Linda R. Watkins in her speech from 50th Annual Scientific Meeting of the American Headache Society she states that Glial Cells are very important in the creation and maintenance of pathological pain states.

What is Pathological Pain?

Chapman and Stillman (1996) defined pathological pain as "severe persisting pain or moderate pain of long duration that disrupts sleep and normal living, ceases to serve a protective function, and instead degrades health and functional capability.."

Sounds a lot like RSD doesn't it? Wouldn't it make sense that something is wrong with our Glial cells if they are the ones that maintain our State of Pain?
The Glial cells are the Immune system of our brain. If our brain is not healthy then how is it supposed to support the rest of our body.

When there is something wrong with our brain, say an infection or an injury even on the small scale, our brain's immune response is triggered. The Glial cells rush to the site of the infection or injury and release a chemical called Cytokines. These Cytokines cause the Neurons to become so excited and in some cases are a direct cause of some seizures

Currently drugs are available on the market that suppress the immune system temporarily. Even more promising are drugs currently under Food and Drug Administration trials for human use that cross the blood-brain barrier, which in simple terms means patients can take a pill which will effectively suppress the glial cells and stop them from reacting.

Although these medicines are meant to stop patients from getting Chronic Epilepsy, it would make sense that if taken within the first 3-4 months of having RSD/CRPS it could stop the over reaction of the Glial cells causing a unending loop of pain.

This is only a uneducated theory. Yet there are new research and studies coming out all the time, such as LONDON (Reuters) which says "Researchers from the University of Liverpool said a dose of a blood product called intravenous immunoglobin (IVIG) significantly reduced pain in almost half of patients with Complex Regional Pain Syndrome (CPRS)"

If they are treating the main immune system which is attached to the Glial Cells and the brain's Immune system it makes sense that this is no coincidence. Something is wrong with the system that is suppose to reprogram, fix, and maintain the neurons and nerves that are causing us to be in pain.

I for one would like to see these new medicines to stop chronic epilepsy used on people with chronic pain. Maybe it will allow the Glial cells to regroup, heal, and stop causing more chronic and widespread panic within our neurons.

There is always hope for the future. Never give up and always research your options.

*Disclaimer* We do not claim to be medical professionals. Always consult a medical professional before starting or going off any kind of medicine. This is an article written by a fellow chronic pain patient after hours of pain-staken research.

Bibliography

Kendra Cherry May 25th, 2011
http://psychology.about.com/od/gindex/g/glialcells.htm

MAURY M. BREECHER
Glial Cells and Pain Control
50th Annual Meeting of the American Headache Society Boston, Massachusetts June 26-29, 2008
http://www.clinicalneurologynewsnetwork.com/conferences/ahs/Watkins_AHS_7_15_08.html

Greg Swenson, CU-Boulder media relations,
CU-Boulder Study Finds Brain's Immune System May Cause Chronic Seizures (July 6, 2009)
http://www.colorado.edu/news/r/077cb274bc382be280c52279a810aec0.html

Author Unknown Last Updated: 2010-02-02 8:00:41 -0400 (Reuters Health)
Immune treatment helps chronic pain patients
http://www.readinghospital.org/wtn/Page.asp?PageID=WTN002844

Calmare Treatments Questions Answered Straight from the Doctor's Mouth.

Fri, 30 Sep 2011 04:37:53 +0100

Recently we had the honor of meeting a doctor who is currently doing Calmare. Dr. Robert Chalmers was kind enough to take his time and answer some questions we had about the Treatment so we could make an educated decision on trying it.

We hope you enjoy!

Dr.Robert Chalmers

Q-First off, Other then the Spinal Cord Stimulator, what medical devices are incompatible with Calmare?

Any other implantable electric device such as Heart Pacemakers/Defibrillators or Interstim Device.

Q-How do you do Calmare , Exactly?

The treatment is actually quite simple. It involved the machine, wires and surface electrodes that deliver the electrical waveforms. The surface electrodes are the same used in heart monitoring such as an EKG. The patients sits or lies comfortable during each 45 minute treatment session. The electrodes are placed OUTSIDE the area of pain so they will not increase the pain in patients with allodynia from CRPS

Q-How does it work?

The mechanism is completely unique. The primary issue with CPRS is the so called physiologic "wind-up" in the brain. This is a complicated change in the nervous system and can be traced at least in part to changes in NMDA receptors in the brain. We need to get to the brain to help with this disease. The use of electricity for the management of pain is not unique to the Calmare system and I am sure many RSD sufferers have tried traditional TENS therapy. However, the Calmare system is not anything like a TENS unit. Injury or other noxious stimulus in the body creates pain chemicals. These chemicals in turn get converted into electrical impulses by your nerves which get transmitted to the brain and get INTERPRETED by the brain. When we use the Calmare system we "control" the electrical impulses that the brain is recieving. By manipulating the input into the brain we "convince" the brain that the area of the body where pain was present is now normal. We know that the brain can be taught, in medicine we refer to thoses changes as Neuroplasticity and there is quite a bit of interesting reading on that topic on the internet if you have the time. I was the worlds biggest cynic prior to actually treating patients with the machine. I thought it was TENS or Placebo but nearly every patient I have treated has already tried TENS therapy and they can tell you this is nothing like TENS.It works!

Q-Should the patient be weaned off of any Narcotics or Pain Medication before getting treatment?

I don't recommend that patient change there narcotics prior to the treatment. Narcotics need to be weaned slowly and that can happen once the pain is reduced. There are issues with using Lyrica and Neurontin with the therapy. The biggest problem is that we want to "speak" to the brain and then we want the brain to change. Lyrica and Neurontin are seizure medicines which quiet down nerve impulses and they impede the Calmare system from talking to the brain and stimulating thoses changes. I have seen success in patient on Lyrica and Neurontin but it doesn't seem to last as long as other patients. I usually recommend tapering the doses of these medications if possible prior to treatment even if it means more narcotics.

Q-How many treatments do you have to have before you see results?

We will know if we can "find" and reduce you pain 15-30 minutes into the first treatment. YOu should be almost completely pain free during the treatments. Each time we treat you you will get a little longer duration of pain relief. Most people are feeling minimal pain by treatment 3 or 4.

Q-Why did it take so long for Calmare to come over from Europe and get approved by the FDA?

I think this issue comes down to dollars and cents. How much money can be made off a machine that insurance will not pay for treatment and scentific studies are lacking. The studies published in Europe are case reports and case series. There are no randomized trials and no blinded studies so the scientific evidence was of pretty poor quality The only U.S. study that is published is also a case series and most physicians are skeptical prior to seeing some "good" scientific data. Fortunately someone at Competitive Technologies saw the place for this therapy and started the process to get FAD clearance.

Q-As of right now how much does Calmare cause per treatment?

$1500 for 10 treatments. I have not been charging people who need to be retreated in less than 3 months.

Q-When do you think it will be covered by insurance?

The one thing we know about RSD is it is an expensive disease between procedures, medications not to mention time-off work and pain and suffering. A single SCS will pay for many, many Calmare treatments. I do believe insurance will pay for this therapy simply as a cost saving measure. The challenge is convincing them that it works. The more patients that get treated, the easier this will be to prove. The company that manufactures Calmare has applied for a CPT or produce code, that is the first step. I would predict 18 months before we start to get some coverage.

Q- What caused you to add Calmare to your practice?

I originally started investigating the therapy as a favor to a family member who has severe sciatica. I read the research and although I didn't believe it would work initially I was intrigued. I did a 30 day trial of the device and treated only the most complicated pain patients. In the initial group they ALL got better. They had tried every therapy imaginable from surgery, meds, acupunture and even traveling overseas for chelation therapy. I thought about all of the gynecologic pain patients I had treated over the years and the sense of frustration I would feel in someone in severe pain that we couldn't help without invasive procedures and addictive medications. I love my primary occupation and I will never stop delivering babies but someone needed to champion this Calmare system in the West and after the trial with the machine I did not feel like I could send the machine back. I think this will be in every pain clinic in the U..S within the next 2-3 years but someone needed to get things started. I am currently amazed by the therapy and find it incredibly rewarding to see people get relief their pain.

Q- Without breaking Doctor Patient confidentiality, have you had any RSD/CRPS patients who you treated with Calmare? Did it relieve their pain and how much?

I have only had the device since June, 2010 and I have treated a total of 4 CRPS patients and all have seen some improvement. The average pain score was 7-8 prior to treatment and 2-3 after treatment. I am hoping to get a large case series of about 20-30 patients so I can give you more concrete data and get it published in the medical literature. Most physicians will not be convinced until they see it published in a Peer reviewed journal.

Q- Do you recommend any Chronic Pain Patient or RSD/CRPS Patient to get Calmare? If so Why? If Not Why?

Calmare is indicated for Neuropathic or Nerve pain. It is not meant for regular body pains like sore muscles or arthritis. I have also had only minimal success with fibromyalgia patients. It is best used when the pain is in a discrete area of the body. The larger the area that is in pain the less likely we are to have success. This is the struggle with fibromyalgia, often the pain spans large areas and we cannot isolate or eliminate the pain.

Q-What are the side effects of Calmare?

I had one patient have a mild skin irritation under the electrodes. I have had a few patients complain about fatigue and headache after the treatment. I have not had a single person have even a slight increase in pain. Most patiets experience a soothing feeling during their treatments. The "old" name of RSD/CPRS is Causalgia which as you know essentially means burning pain. Patient reports the burning fades away during the treatments.

Q-What do you think of RSD/CRPS in general?

My first exposure to RSD/CRPS was during my residency training. I took care of 2 patients who were pregnant and also had the disease. I will fully admit I did not understand the disease during that time since I was in the beginning of my training but I have never seen a disease in which the patient endures more suffering than those with CRPS. We want to help you!

Q-Do you think that this is the beginning of bigger and better treatments for Chronic pain?

I hope so. We need to do better. Chronic pain is an epidemic in the United States.

Q-Is there anything that you would like to add related about Calmare or RSD/CRPS that I didn't ask?

I thank you for your interest in this new therapy. I am happy to respond to any questions through Facebook mail or traditional e-mail at rob.chalmers@sperotherapy.com