Newsletter
Cindy's Speech - Oct. 8, 2006
More Jamm - Tahlequah, Oklahoma
I'm not comfortable with public speaking so, in preparation of this speech, I enlisted the help of many dear friends. The encouragement element came from my husband, Chas Holman and one very enlightened pediatrician, Dr. Greg Smith. The substance, of my speech, is divided by input from some of the real heroes in my life.
And I would like to thank you...! Not only to you here today, but to everybody..! It is ALL of you that fuel my determination to get Morgellons Disease recognized. Every Morgellons patient that ever emailed me or called me... each and every one of you is what gave me the strength, and continues to strengthen me, to overcome MY fears... so that I could, can and will fight for this cause.
We have been given a wonderful opportunity. We have the power to make a change in the practice of medicine. This change will affect millions. We should be thankful for this opportunity.
My first contributor is a fellow nurse, Stephanie Vaccarro, RN, BSN, CCRN. I have known and worked with Stephanie for 14 years. She is a 'nurses' nurse' - hearts, livers, kidneys... didn't matter to Steph she handled all of it with ease. She fell and broke a leg a year ago, got some bad hardware and had to redo the entire operation within six months. She has an internal fixator with 9 pins sticking out of her lower leg and hasn't been able to walk for almost a year. A few months after the second operation, she fell again and in trying to protect the precious hardware healing her leg, she winds up breaking her arm.
In light of all of that she'd been through, Steph told me recently, "We have two choices, one is to be the victim, the other is to be victorious." I am fixated on the latter.
My second inspiration is Nurse Practitioner, Ginger Savely, RN, NP. Who wrote in the October issue of Public Health Alert, the following summation of this Morgellons conundrum...
"To confer a hasty psychiatric diagnosis when a patient’s symptoms seem too unusual to categorize is as much a transgression against humanity as it is medical malpractice. There are many more “orphan diseases,” as they’ve come to be known, with “orphan patients” abandoned because they didn’t have the good fortune to come down with a known and socially acceptable condition. Throughout the history of medicine we have seen this patient mistreatment due to ignorance on the part of the medical team, patients with tertiary syphilis locked away and put in straightjackets, epileptics believed to be possessed by the devil, gastric ulcer patients advised to learn relaxation techniques because they were inflicting their ailment upon themselves.
As practitioners, let us never forsake our patients. Let us take the time to really listen and look. May we never abandon a patient by discarding him into a lonely, bleak existence of despair. May we not disregard his concerns, ignore his feelings, nor discount his suffering. That is not the way that we would want to be treated nor would we want that kind of disrespect for the ones we love."
Ginger is one of few practitioners who understands what "Evidence Based Medicine" really IS. She actually 'LOOKS' at the 'EVIDENCE'. The evidence that her patients bring in, or produce right in front of her, even the stuff they ask her to look at 'on-line'. Is it too much to ask a doctor to 'look'..?
And my third hero is not just one person..... my third hero is an institute of higher learning, just to the west of here. A Medical School where EVIDENCE is the base of medicine and where Doctors are not afraid to go beyond medicine in order to provide the best possible outcomes. Oklahoma State University is INDEED an institute of HIGHER LEARNING. Dr. Rhonda Casey and Dr. Steve Eddy have both asked me "Why don't the MD's see this stuff..?" to which I always reply, "They never looked."
And of course Dr. Fernandez, without whom, the research funding would not be happening. Lee, what a wonderful person and Jen, handling the calls and emails, God bless you both. Last and certainly not least, Dr. Randy Wymore, who is ultimately responsible for all this... simply because he listened, learned and looked.
My last contributor was also a Ph.D., who wrote one of my favorite speeches. And I've taken some of that speech to help me put into words some of my personal frustration.
There are those who are asking the devotees of Patients rights, "When will you be satisfied?"
We can never be satisfied as long as the Patient is the victim of the unspeakable horrors of medical brutality.
We can never be satisfied as long as our bodies, heavy with the fatigue of travel, cannot gain treatment in the ER's of the hospitals and the Dermatology clinics of the cities.
We cannot be satisfied as long as the Morgellons Patient's basic mobility is from an ER to a Psych consult.
We cannot be satisfied as long as a Morgellons Patient in Missouri cannot work and a Morgellons Patient in Virginia believes he has nothing for which to live.
No, no, we are not satisfied, and we will not be satisfied until "justice rolls down like waters, and righteousness like a mighty stream."