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The Bliss Blog

Terri-Levine

Last week I met a courageous woman named Terri Levine. She doesn’t jump out of perfectly good airplanes or leap tall buildings in a single bound, but she is somewhat of a super-s/hero in my book. Every day, she faces the kind of pain that I shudder to even contemplate and yet, she keeps on keepin’ on in her work as a conscious entrepreneur and business coach. She was a speaker at a marketing conference I had attended and not only was I was deeply moved by her passion, her creative business savvy and impeccable integrity, but also devotion to a cause that is both personal and universal for her.

 

What is RSD?

Reflex Sympathetic Dystrophy (RSD) also known as Complex Regional Pain Syndrome (CRPS), is a chronic pain, neurological syndrome.  RSD is a malfunction of the central nervous systems, which causes pain and additional symptoms. RSD effects millions of people in the United States.  This is not a new disease. RSD has been documented all the way back to the Civil War.  If not treated aggressively and correctly RSD spreads rapidly.

When and how were you diagnosed?

I was diagnosed when I tore my achilles tendon about 6 years ago.  Even though my leg was set in a full cast I was screaming 6 hours a day with pain and went to over 13 doctors until I found a doctor who diagnosed me.
What keeps you going in the face of the horrific pain you experience?
I can either have a pity party or I can do good work in the world. I prefer to do good work.  Focusing on others takes the focus off me and allows me to make a difference in the world.
What is the Terri Levine Foundation For Children with RSD?
I developed this foundation because I hate to think of the pain that a child suffers from each day with this disease. Imagine pain so severe the breeze of someone walking by causing excruciating pain so intense it’s as if someone just lit you on fire, the vibration of a vacuum cleaner shooting through you like knives, or muscle spasms so strong your body shakes uncontrollably. Imagine not being able to roll yourself over or sit up without help, not being able to swallow, waking up blind, or trying not to breathe because it causes too much pain. Being stuck in bed, feeling so isolated and alone, while life passes by and everyone you once knew moving with it, leaving you behind.  Ketamine infusions (the only thing that takes away some of the pain) are $500 each day and to start you need to have 10 of them back to back. Insurance won’t cover this because it is an “experimental” drug.  So I developed the foundation to raise funds to help children with RSD get the medical care they need. All funds raised by The Terri Levine Foundation for Children with RSD go directly to helping these children.

 

 

Besides the obvious physical implications of having the condition, what emotional toll does it take on those with the diagnosis?

RSD may have profound psychological effects on patients and their families. Many with RSD suffer from depression, anxiety or post-traumatic stress disorder. The psychological impact of chronic pain from  RSD/CRPS and the impact on coping can be serious. Chronic pain is often associated with  depression and anxiety. This can include not enjoying the usual pleasures of life, crying spells, a lack of drive or a-motivation, decreased ability to cope with even minor stressors and frustrations, irritability, a diminished sexual drive, social withdrawal from others, and a loss of self-esteem. Intrusive rumination or tendency to worry and think about sad or distressing things or problems without resolution can become problematic. In addition, with the development of a chronic health problem, one can become increasingly preoccupied with health concerns and pay too much attention to some minor complaint that previously would have been ignored, but now may be seen as indicating something potentially serious. 

 RSD pain is ranked 45 on the McGill pain index, which means it is rated as the most painful chronic pain disease that exists. It is above cancer(non-terminal), and both medicated and non-medicated labor/delivery.
 
RSD/CRPS is often called the “Suicide Disease,” because it causes so much pain that the patients are in greater risk of taking their own life.
In addition to mainstream medical intervention, are there integrative modalities that can be helpful?
Two major approaches to the medical treatment of early RSD exist: sympathetic blockade and anti-inflammatory therapy. Although these are not mutually exclusive, the order of usage is generally specialty-dependent, with anesthesiologists/surgeons starting with the former and internists/rheumatologists starting with the latter.
* Anti-inflammatory medications (corticosteroids, calcitonin)

 

* Although nonsteroidal anti-inflammatory drugs (NSAIDs) may provide some symptomatic pain relief in patients with RSD, they are not effective in altering the skin changes or natural history of the process and thus play only a supportive role.

 

* Spinal cord stimulation: typically works 3 months or less

 

* Ketamine infusions: works to temporarily alleviate some pain in some patients but does not stop the disease process

How can people get involved?
Help a child today by making a donation at: www.TerriLevineFoundationforChildrenwithRSD.org  and/or host a speaking event/fundraiser
 Is there anything else you would like folks to know?
Because currently there is no cure for RSD, the goals of treatment include: 1) controlling and minimizing pain to the greatest extent possible; 2) restoring function to the RSD-affected limb; 3) preventing progression of the disease process to the late stage; and 4) improving the patient’s quality of life and psychological functioning.”

And we want to help children have the greatest joy in life as possible.

Ever take time to consider how blessed you are? When I experience spiritual amnesia, I too forget. At the moment, I have my left leg propped up on a pillow, since it has been crying out for my attention over the past few days. I had knee surgery a few decades ago following a torn meniscus and still feel tweaks and twinges. I walk a lot and work out on the elliptical, cybex and bicycle at Planet Fitness. According to Louise Hay, knee issues are about fear of moving forward. I consider that on target for my life circumstances at the moment. There are so many opportunities that are presenting themselves for my perusal and I honor them all. I know that I want to progress, and take my creative work to the next level, AND there are times when I feel myself frozen and distracted. It occurred to me that knees are about ‘needs’ as well and I have for too long, been ignoring my own needs, believing erroneously that I am so self sufficient that I don’t need support from anyone. Lately, I have been asking for support from the Universe and the people in it and the response has been a resounding YES! So, what keeps me from asking more often?  Again, erroneous belief that I don’t want to inconvenience other people (heaven forbid!) and yet, I sometimes feel as if I have a swinging door (think Western saloon) that people move through with regularity that has me dancing too fast to keep up with the expectations.

Perhaps another metaphor is the idea of getting down on my knees in gratitude for what IS working in my life and things that are as I would have them be. I have a huge list and just this weekend, was playing the “How much more blessed could I be?” game.  At every turn, I found myself attracting perfect parking spots, prizes, and ‘chance’ meetings with new friends. I have continued it today and at the moment, am sending that energy to my knee.

I am feeling exceptionally blessed that I can stand, walk, dance, stretch, do yoga even in the midst of the ouchies. I am grateful for an abundance of love, family, friends,  as well as work that I love that sustains me every which way imaginable.

I will listen to my knee and follow its guidance about ‘kneeds’ that are going unmet in my life.

http://youtu.be/PV90Ef7yqYk Blessed by Brent Dennen

 

Facebook being the microcosm of the world that it is, I was fascinated this morning while perusing it long about 6 a.m. In a span of about 10 minutes, I noticed celebration and sorrow, fear and fun, anger and awesome appreciation being expressed in people’s postings. One friend was announcing her daughter’s scholarship, while another shared about a close call with a drunk driver. Others were asking for prayers for ill loved ones while some folks were offering their perception of the world around them. All of these things were happening in their ‘worlds’ simultaneously. I am here engaging in my Saturday morning ritual of listening to Sleepy Hollow on WXPN (88.5 fm in Philly), slight sleep deprivation headache with the whirlwind of activity in my life lately. Enjoying kale, flax milk, celery, carrot, blueberry, raspberry smoothie. Anticipating a few days at the XPoNential Music Festival today and tomorrow (an annual highlight of my summer) where I know that in addition to amazing music, I will spend time with dear friends and make new connections with other life and music lovers.

Yesterday, I was in creative business mode while attending “Unleash Your Hidden Influence: Harness Your Marketing To Catapult Growth”.   A mouthful and a day-full of ideas, insights, inspiration, opportunity and connectivity. The facilitators were Shawne Duperon, Terri Levine and Teresa de Grosbois, each a powerhouse in her own right. They gave us the best of what they knew about relationship in biz. My always-on-the-look-out-for -new-ideas friend Ruth Anne Wood had invited me to join her and early yesterday, we trekked down from our Bucks County area homes to the Philly area airport hotel that housed the day long event. I was delighted upon arriving when the first familiar face I spied was that of my friend Donna Meyer.  I had just been thinking about her on the way there, when remembering that she had brought the high energy force of nature, Lisa Nichols in to speak in New Jersey and I was bringing to mind some messages Lisa had to share that would likely connect with what we were about to experience. Donna and I heart-stormed about a workshop I will be teaching at her center in the Fall. At one point, I had turned to look in the back of the room and was glad to see Luisa Rasiej  (The Inner Contessa)  smiling back at me.

The rest of the whirlwind day was filled to the brim with ideas that I immediately began to compartmentalize in my brain, sorting out how and where I will put them to use. I was gratified to hear that one of the takeaway messages is something that I already do easily and it is that of being a connector and influencer who supports and endorses people’s work and becomes a yenta (Yiddish for matchmaker) who brings them together for mutual benefit. While there, I was having such a good time with my mind whirling over who in the world outside that hotel conference room I could match with those in the room. It seems that my fellow attendees were happy to do that for me too.

I had the opportunity to work individually with Terri and Shawne as a ‘demo model’ for concepts they were presenting. I figured that since I had invested a day to learn all I could on the subject, I was going to put my heart and soul into the experience and slurp all of the juice out of the glass. As much as I have been a journalist and speaker for more than 25 years, I found myself feeling like a newbie in so many ways. Not as smooth and polished as I am accustomed to being, I could hear the monkey mind chattering “You should know this stuff.  How come you feel like an inarticulate teenager on a first date?” They were all gracious and supportive and their feedback was helpful. Needing to integrate the ideas and put them into practice.

Looping back around to the original idea, I revisited Facebook and see that my friends are now sharing inspiration, wisdom, photos, as well as inviting their friends and their friends and their friends to experience the dance of life where everything is happening all at once.

 

Billyfingersmeme

Tonight, I had the joy of interviewing Annie Kagan, who wrote the book The Afterlife of Billy Fingers:  How My Bad Boy Brother Proved To Me That There Is Life After Death on my show It’s All About Relationships and she shared the messages that came from her brother who died after being hit by a car, while on drugs. With a  long term history of addiction, he found peace in death and offered words as comforting information to his sister and then she passed it on to grateful readers. A grounded woman, with a degree in Chiropractic, a musician and yogini as well, this  experience came as a surprise to her and initially, she questioned her sanity and stability, since she was grieving. When it became apparent that he was sharing information that he would have no other way of knowing.

Death is a mystery for many of us. It is part of the flow of life and yet, it carries with it a sense of fear of the unknown. If  we believe in life after death and/or reincarnation (I do), then we may have forgotten that there is something more than this day to day existence. Imagine if you will, that somewhere in the ‘heavenly nursery’, you are floating in awesome amniotic fluid, awaiting a slide down the birth canal. Would you be frightened or exhilarated?   I have been present at the death of friends, family members and residents in nursing homes where I had been employed as a social worker and had thought of it as being like a mid-wife on the other end of the life spectrum. When my mom was on her hospice journey back in 2010, she told me about a dream she had. She was about to climb onto a water slide with a little boy and girl; one behind her and one in front of her. She shared in a child’s voice,when at the top of the slide “I was really scared, but by the time I got to the bottom, I was having such a good time! What do you think it means?”  I laughed and asked “What do YOU think it means, Mom?” She got a knowing look, but couldn’t voice her interpretation. At that point, she was still in the ‘just don’t know’ mode, while I was certain that it was a beckoning to her next incarnation. As the time of her passing got closer, she too became certain that my father would come for her (“He told me he would.”) and that it was safe to go down the slide.  Wheeee~

www.theafterlifeofbillyfingers.com

www.vividlife.me

 

http://youtu.be/ebtC3ORg9fU All Things Must Pass by George Harrison