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RSD is 24 hours a day, 7 days a week.

LINK: http://princessinthetower.org/a-letter-to-those-who-do-not-have-crpsrsd/

I found this extremely interesting to read.
My husband has CRPS along with Peripheral Neuropathy, Distal Neuropathy and Small Fiber Neuropathy. It is from his severe grade II ankle sprain with ligament tear that caused it that never healed properly.

Everything this woman wrote is exactly how my husband copes with his everyday.

He is on no pain meds. None of the pain med treatments works. The pain management doctor we went to does not believe in Narcotics. Since regular medication did not work the only option was a SCS.

So he deals with the nerve diseases and the chronic everyday migraines without medication. In many ways it tells his body when it needs to take it easy,
or he should just rest. When it's a bad day. The triggers of what causes
specific pain in his body. The other side is that he won't have any longterm issues with his liver or kidney's.

I encourage you to read the entire letter. It is worth you time.

This is my favorite part of the letter:

Maybe the person sitting next to you at dinner touches your RSD arm, or your foot gets accidentally kicked at the pew at Church, or your leg gets bumped into at school; all these things seem harmless to the average person and they may not understand how they could ever cause pain to an RSD patient, but trust me, they can and do.

Some people can even have a light breeze cause them excrutiating pain. I know what you are thinking, “that is crazy”. No. That is RSD. If you think it’s crazy, and I am telling you from a knowledge background, think how a patient who knows nothing about the disease feels when they start forgetting things, especially when their pain is high?

Or when the slightest touch, even the caress of a loved one, the kiss from a spouse, the touch of the sheet on the foot, the tightness of a sock, sometimes even the very breeze itself blowing over the body, can cause such pain to the patient it will bring tears to their eyes. Think of the confusion and terror that brings into their lives.

And when their friend and loved ones sit there, make fun of them and disbelieve them when they try to explain how it causes pain, well, that hurts them even more. When a disconnected Doctor doesn’t believe you that is bad enough but when a loved one doesn’t believe you it hurts almost as much as the pain. And let me set the record straight here on the pain, there is no pain like the pain of RSD/CRPS.

That isn’t just from a patient or an advocate, it is documented. RSD pain is ranked higher than any other form of chronic pain known today. RSD is ranked on the McGill Pain Index as the MOST PAINFUL FORM OF CHRONIC PAIN THAT EXISTS TODAY!



( 2 comments — Leave a comment )
Feb. 11th, 2015 02:50 am (UTC)
Feb. 16th, 2015 10:54 pm (UTC)
It's bad enough when people know what causes the pain, but when even the doctors don't understand, it's so much worse. I find it's very hard to find even a pain management specialist who has any idea how to deal with chronic pain. It took me years to find a pain management specialist who would even prescribe something to take the edge off of the pain enough to make it livable. Most doctors don't understand pain unless they experience it themselves!
( 2 comments — Leave a comment )

Mai-Ling :: Pioneering Alternative-Classical Pianist

Frances Mai-Ling is pioneering the genre of Alternative-Classical music; taking classical piano to new level giving it a fresh sound of the traditional and the current trend of rock, pop, alternative. Creating a new genre that is powerful, for people of all ages can enjoy. Since 2001, she has taken her creation of Alternative-Classical merging the sparkling qualities of classical music with the emotional melodic style of many generes, all within an intimate setting of Mai-Ling and her music. She got her first start in show business with her parents magic show , but chosed music over magic. Mai-Ling is a trained classical pianist, with only having two years of piano lessons under her belt. Performing a program of original music. Mai-Ling is co-founder of EastWestNow Records. The first record label & collective that promotes artists of Asian Ethnicity. Focusing on artists who are half-Asian. Mai-Ling is HAPAnese (a term she coined being 1/2 Chinese & 1/2 Polish). She is also one-third of "The Shake n' Poe Project", where she write music to the text of Shakespeare. Founder of the creative artists group "Notes & Poets: Bringing the Creative Artist to the Stage." She has scored music for theatre and film, along with a various amount of side projects to her credit. Besides being a published composer, she is also a published writer and visual artist. Mai-Ling is an independent artist.

In addition to her creative arts efforts, Mai-Ling works with the American Heart Association and its division the American Stroke Assocition. As an Go Red For Women ambassador and American Stroke Association ambassador. Mai-Ling formed the "Take Heart Awareness Cause" in 2005 to help bring her personal crusade of helping create more awareness of heart disease and stroke to the public forefront.. She has been recognized regionally and nationally with the "Heart & Stroke" Hero Award for her "outstanding efforts to create a healthier community, safe from the devastation of heart disease and stroke." She help's create awareness of the #1 and #3 killers among men and women in the United States. A portion of every CD she sells includes information and a portion is donated to the AHA for research and eduction programs. One of the first pioneers in merchandising her CDs for a specific cause.

She is currently working on a new release for the winter, a book project for next summer, and continuing her line of hand painted purses and jackets.

For more information about Mai-Ling please download her complete 40 page press kit at her website.


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