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An Insiders View Of Calmare

Mon, 22 Apr 2013 22:39:35 +0100

The Following Is A Q&A with Norman J. Black, the Clinic Manager of SPERO Pain Relief Therapy of Illinois & Gracie Gean, a RSD/CRPS Angel from Illinois.

This article is here to help those with Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome, and many others to understand more fully what Calmare is truly like.

Christa:

Norman, what made you start administering Calmare and what kind of training did you receive?

Norman:

First Christa, thank You for reaching out to Gracie and Me. Those suffering from CRPS/RSD are fortunate to have advocates like you, who offer hope and guidance in dealing with this life altering ailment.

My interest in Calmare was a bit unconventional. My formal training is in accounting and finance where I’ve spent the last 30+ years running businesses in the commodity futures industry in downtown Chicago. My older brother Len approached me about 4 years ago to make introductions for him to my friends in Chicago who were physicians. He had become a sales contractor for Competitive Technologies (the company which owns the intellectual property and marketing rights to Calmare) and was trying to sell this new medical device that “non-invasively relieves chronic neuropathic pain”. After reading the literature about how the device worked and what types of pain it could relieve, I decided to do some of my own research to determine if Calmare could be commercially viable. That’s where my business background came in handy. One of my first priorities was to contact Dr. Robert Chalmers of SPERO Pain Relief Therapy in St. George, Utah. I flew to his clinic, met with him for a few hours and subsequently we worked out an arrangement where I could use the SPERO name and consult with him on our patients cases when needed. For Dr. Chalmers , having a SPERO clinic in Chicago was a way for the Utah clinic to gain more visibility.

To make a long story short, I finally opened Spero Pain Relief Therapy of Illinois, PC in August of 2012. We have a Medical Director, Mitchell Weisberg MD, MP who is an Internist with a certification in Psycho-pharmacology. Dr. Weisberg’s psychiatric background is an important benefit for our patients, especially those with CRPS. Almost all of our patients are taking some form of anti-depressant and it’s important to understand the effects these medications have on their emotional and physiological wellbeing.

Our clinic also employs three technicians who have been trained by Competitive Technologies in the use of the Calmare medical device. We should be receiving our Calmare Certification shortly. All of our technicians are licensed in the state of Illinois in their respective medical specialties. Although I also participated in the training, my purpose was to understand the treatment as best possible so I could thoroughly explain to prospective patients what they could expect during a Calmare treatment. I’m sure Gracie will tell you that she’d much rather have our technicians treat her than me!

Christa:

Gracie, How did you find out about Calmare? Why did you feel it was right for you? Also, How did you find Norman?

Gracie:

I am a 39 year old mother of two beautiful teenage girls. I took up kickboxing because it is a wonderful full-body sport and a great stress reliever!

I injured both of my wrists kickboxing at the gym. I had successful surgeries on both of my wrists, but a less than successful pre-surgical nerve block in my left brachial plexus. This triggered the RSD. I have been battling the beast for the last three years. I have tried aggressive OT, Stellate Ganglion Blocks, nerve stabilizing drugs, anti-depressant drugs (used for nerve pain), and a mountain of narcotics. Nothing cut the pain. I eventually just threw the drugs away and decided to go at it on my own. In desperation, I turned to the internet for help. I actually discovered Calmare Therapy on THIS site, RSD/CRPS Doesn’t Own Me! This site featured an interview with Dr. Rob Chalmers of SPERO Therapy, where he discussed his views on Calmare Therapy. I was intrigued to learn that there was a drug free treatment available! After doing my own research on this treatment, I just knew that I had to try it. There were no negative side effects that I could see. I discovered that there was a facility in Chicago, which is only a 3 hour drive from my home. I met Norman when I called the clinic to learn more, and we quickly became friends.

Christa:

What made you, Norman, want to help those with Chronic Pain diseases like RSD/CRPS?

Norman:

As I’ve mentioned in the first question, my interest in treating chronic pain was motivated by the business opportunities Calmare offered. Having no previous medical background (other than my mother and first wife being RN’s,) I now understand and have experienced the altruistic side of medicine. You cannot put a price on the type of hug I received from Gracie when we drastically reduced her pain from RSD during her initial treatment with Calmare. When you see mothers’ shed tears of joy instead of tears of sadness because their teenage daughter is finally getting some relief, especially since I have two children of my own, you appreciate the fact that you’re making a difference in someone’s quality of life. Yes, we have bills and the device is not inexpensive, but at some point I plan on treating patients that don’t have insurance and can’t afford the treatment.

Christa:

What did getting Calmare mean to you as a RSD/CRPS patient, Gracie?

Gracie:

Calmare Therapy has changed my life! Before the treatments, my pain was unmanageable. While I am actually connected to the machine, I have absolutely NO pain. After the treatment ends, I have experienced up to 24 hours pain free. Beyond that, I usually stay at a pain level of 3-4 for periods of about 4-5 weeks. .I make sure to get plenty of rest, soak my RSD arm in hot water with Epsom salts, and get Calmare boosters if needed. I do not take any medications for pain. This all allows me to have a relatively normal life, depending on the weather patterns and the amount of stress in my personal life of course.

Christa:

Is there a type of patient that responds best to Calmare and why did you believe Gracie was perfect to receive this treatment?

What is Calmare’s success rating?

Norman:

Patients who respond best to Calmare are those who have been diagnosed with chronic neuropathic pain. In addition, patients who have neuropathic pain that is localized, ie., limited to one or two areas of their body generally respond better than patients where the pain is widespread. The electrodes are placed on healthy nerve tissue that surrounds the area of pain. If the pain is widespread, then it’s often harder to find skin areas where we can place the electrodes. With Calmare we’re not trying to block or inhibit the pain, we’re trying to change the brain’s perception of what’s happening in the periphery by introducing non-pain stimuli. If the avenue by which we’re sending the stimuli is damaged or suppressed, then we can’t be assured that the message is getting through. That’s the primary reason we need healthy nerve tissue. Additionally, patients who are taking neuroleptic medications such as Lyrica or Neurontin may not have the best response to Calmare. As I noted above, if the nerve pathways are suppressed, then it’s more difficult for the non-pain message to get to the central nervous system and subsequently to the brain. Ideally patients should try to wean themselves off these medications (under the supervision of the prescribing physician) before undergoing Calmare treatments.

Gracie was an excellent candidate for several reasons. First, she was not taking any medications for her pain that would inhibit the device. And second, her pain was restricted to her wrist and hand so electrode placement was straight forward.

Answering any questions that address the “success rating” of Calmare is difficult. How do we measure success? If in some way we ease the pain from what was intolerable to something that’s tolerable, well that’s successful. If we increase the quality of life in some way, then that’s a success. If a patient is pain free for a day, a week, a month, then for them the treatment was a success. What I will say is that over 90% of our patients have had enough reduction in pain during their initial treatment for them to want to continue with the initial 10 treatment protocol. I would say that’s an impressive success rating.

Christa:

What were your fears if any about the procedure, Gracie? How did it, on the anxiety scale, compare to other treatments that you have done. Did you have any side effects mentally or physically?

Gracie:

My only fear about this procedure was that it may not benefit me. I already knew that it would not negatively affect me because I had done my research ahead of time. I had no anxiety about it at all. I had no negative physical side effects from the Calmare, other than a little redness where the electrodes were stuck onto my skin. I have extremely sensitive skin, so this was to be expected. There were no blisters or anything; just redness that went away within minutes. I must admit that it was a bit of a mental challenge during my first week of treatment. After being subjected to intense pain for such a long period of time, having a brief reprieve from that pain seemed like a cruel joke. The rebound pain almost felt more intense. It left me craving more and more Calmare Therapy sessions until the pain leveled out during my second week of treatment. One thing I cannot stress enough about Calmare Therapy is that you really need to give it time to work. The more treatments that you have, the better results you will experience!

I had PLENTY of anxiety prior to the Stellate Ganglion Block! How was I supposed to mentally prepare myself to have a huge needle stuck through the front of my neck, into my spine, while I am not sedated and being told not to breathe? That is not an easy task!

Christa:

As of right now Calmare isn't approved by many insurance companies.

How did you help in this aspect to make this treatment more available to the general population?

Norman:

We’ve actually received favorable responses from quite a few of the private insurers. So far we’ve received reimbursement from United Healthcare (including one of their regionally owned affiliates), Farmer’s Bureau Insurance of Michigan, and Blue Cross Blue Shield of Minnesota. I’m also aware of other clinics using Calmare that have received private insurance reimbursement. In cases where the coverage has been denied we will assist our patients in appealing the claim. It’s important for the patient to be diligent in their appeal. The more cases the insurance companies are presented with, the greater the likelihood that Calmare will receive insurance coverage. The success of clinical trials presently complete and in progress should also make a big difference in whether private insurance will pay for Calmare.

In Gracie’s case her insurance carrier not only covered the “out of network” expense of the treatment, but Gracie applied for a GAP exception (for procedures that are not available within a certain mileage range) which was approved and resulted in our receiving 100% of what was billed. This established a strong precedent for future patients with the same carrier.

I’ve also spoken with Carl O’Connell the new CEO of Competitive Technologies (CTTC)) and he mentioned that getting in front of the larger private insurance companies is a top priority. CTTC is working on aggregating all the positive insurance responses received by Calmare clinics to strengthen the case for reimbursement.

Christa:

How did your insurance cover Calmare, expand upon what Norman mentioned? What advice can you give to others trying to fight their insurance and/or workman's comp?

Gracie:

I have private insurance through my employer. I am fortunate that this is actually a covered procedure. SPERO Pain Relief Therapy was out of my network, so my insurance company only wanted to pay 80% of the charges. I filed a Gap Exception to prove that no one within my network could provide this service, and the Gap Exception was approved. My insurance company now pays 100% of the charges for all of my treatments. I am the first person in the US to have a private insurance company pay 100% for this treatment. Since that time, Renee Hanson, the Clinic Administrator at SPERO, has been able to reference my case and has gotten several other cases covered also. I have taken very detailed notes about my journey and successes through Calmare Therapy, and I have provided those notes to several friends that are fighting Workman’s Comp. Calmare Therapy is less invasive and much cheaper than many alternatives. Hopefully we can continue to share these success stories and maybe Workman’s Comp and the insurance companies will take notice!

Christa:

What are the long term results of Calmare? Does it need to be redone?

Norman:

The long term results of Calmare are varied. You have to evaluate each patient differently, especially those with CRPS. In cases where the pain has not started to spread our expectations are for longer periods of relief. We’ve had patients experience relief from several weeks to 3 to 6 months. Our goal is to zero out the pain for as long as possible. Short of that, we’ll treat a patient until their pain relief has plateaued. With CRPS we’re finding that it takes a greater number of treatments to achieve the same amount of relief as those patients with other neuropathies. What’s been promising is that most CRPS patients get enough relief to impact their quality of life. It often means being able to continue with physical therapy that had to be discontinued because of elevated pain levels. Increased range of motion has also been noticed.

If the pain starts to elevate after the initial treatment protocol, we encourage the patient to come in for “booster” treatments. This usually consists of 2 to 4 consecutive daily treatments or enough treatments to get the pain to plateau again.

Christa:

How many treatments have you done? How are you currently feeling physically? Mentally? Have these treatments affected your family life?

Gracie:

I completed three separate 10 day rounds of treatments. Now I just go in for boosters as needed. The boosters are 3 or 4 treatments. It is important to note that Calmare Therapy is not a cure. We all know that RSD is incurable. It is a treatment. It attempts to treat the symptoms of an incurable disease for unknown periods of time. Just as RSD manifests itself differently in everyone, it also reacts to the treatment differently in everyone. It is impossible to say how long it will last. Right now I feel really good, mentally and physically! These treatments have helped my girls also. Watching their mother in constant pain takes a toll on them too. They may not admit it, but I can see it in their beautiful faces. Seeing mom happier makes them happier.

~~~~~

Thank You Norman & Gracie for your time and courage helping those around the world learn more about Calmare and how it could possibly help those with RSD/CRPS!

If you would like to learn more about Calmare.

Please Read our Interview with Dr. Robert Chalmers, who is affiliated with this Clinic.
http://www.rsdcrpsdoesntownme.com/articles/calmare-treatments-questions-answered-straight-from-the-doctor-s-mouth-

To Learn More about SPERO Pain Relief Therapy of Illinois:
http://www.sperotherapyillinois.com/

More Information about Competitive Technologies:
http://www.competitivetech.net/

*This interview is informational only and we do not endorse this clinic.*

* http://www.rsdcrpsdoesntownme.com/disclaimer.php*

United We Stand, Divided We Fall

Sat, 21 Jul 2012 20:16:39 +0100

Even Advocates Lose Their Spirit.

This statement may come as a shock to many. People see advocates for RSD/CRPS and those that fight so valiantly against it as heroes with armor as thick as lead. Nothing can touch them, or pull them down. Sadly this isn’t always the case. We are just as vulnerable to the clashes and the arrows of misfortune, depression, and circumstance as anyone else. We may sometimes give words of encouragement but sometimes it is us who need to hear those words the most.

We aren’t alone in this world. We are not invincible but we are stronger than we know. It is when we are in the pit that we see the light. Hoping to, one day, be free of the bonds that hold us back. The words from those around us saying others have tried and failed. To see the fear of failure hold us tight and keep us from success.

It is when we shrug off that fear embrace it and accept it for what it is, and overcome it that we truly crawl into the light.

Now am I saying I am totally there? No. I am still a climber. I strive to one day overcome being a Chronic Pain Patient and stand free and without worry of what the day might bring. To be able to do what my mind tells my body to do and not have to sit there thinking about the consequences.

You may say, “What is the point of continuing to fight against a battle some say is un-winnable?”

Do not allow despair to overtake and wrack your brain and body. Despair will tell you that the simplest thing isn’t winnable. How can we overcome the larger obstacles if we are sitting in the fetal position about the small ones?

I once dreamt of a fable. I was taking these stairs and from where I was it looked easy enough to walk down. But when I took a step down and turned around the step I had just taken was far above my head. I sat there wondering how in the world I could get back up. It is too tall and I cannot climb. My arms are too weak and there aren’t even foot or hand holds. So I turned around and began to climb further and further down the staircase. If I couldn’t go up, I might as well go down. As I walked the colder and the scarier it got. I walked till I came upon a man in tattered and worn clothes. He looked up at me and smiled. “Finally! My Salvation!” He screamed. He told me that he had been trapped there, with no way out. He scrambled to his feet and knocked me to the ground and stood on me and he finally was able to reach the top of the step above. He scrambled up the ledge looked down and laughed. He turned and walked away and not but a minute later I heard a loud cry of sadness come from the step above me. He had forgotten that the other steps were as high as the last. Even though he had gotten this far he was still no further than before.

The moral of this fable is, only together can we overcome these hurdles. I have tried going it alone, thinking that life was fine and dandy, only to realize that I was walking further and further down those steps. Ignoring the warning signs, and not getting help. Together, through support and psychological intervention, we can continue to be strong enough to overcome these obstacles. Instead of climbing one over the other we can support and lift each other up and over these steps and back into a healthy state of being. We all need this. This is not just for people in pain, like RSD/CRPS, but every person who has ever breathed the air or stood on this earth. We all need to pull together and support each other through each and every obstacle that stands in our way.

Only together we can make it. For if we divide and put ourselves before others, we may get to that next step and find no one left.

Christa Whightsel
Creator and Co-Founder of RSD/CRPS Doesn't Own Me

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.

articles

An Insiders View Of Calmare

United We Stand, Divided We Fall

Dear 12-Year-Old Me

~*IMPORTANT*~ ALL RSD ANGELS PLEASE READ!~

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

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

A Letter To Those That Don't Believe

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

RSD/CRPS Awareness Month

SSD/SSI

~IMPORTANT~ ALL RSD ANGELS PLEASE READ!~