Thursday, March 15, 2012

my post traumatic stress...

post traumatic stress and compartmentalizing.
compartmentalizing is the sorting,separating and organizing of the events of your life into compartments of the brain so that there is a place for everything and everything is in it's place. it;s a coping technique to help find and restore order. kind of like a closet full of memories categorized by intensity of joy or pain. however,post traumatic stress has triggers which cause a physical and emotional reaction sometimes equal to the original event/s. meaning a similar event,a smell,a sound,a likeness to a person or place from the original emotional and or physical injury can bring back the original actions reaction as anything from an uncomfortable feeling, all the way to reliving the original trauma. if 1 or more compartments is too full and is triggered by one or more of these senses,the pressure must escape. releasing some or all contents of said compartment/s.

some triggers happen right in front of your minds eye stopping you in your tracks and taking your breath away, sending you into a silent slow motion as moments and or years of your life fall to the ground or come straight at you sticking to you as if you are a caterpillar in their cocoon or a bound and gagged captive. sometimes erupting to incredible heights above you and while knowing the destruction has just begun and it's not until they start to descend that you learn what form they have taken in the atmosphere  ...fire,ice,written pages,living memories on shards of glass,a word or words, a face or faces,a voice or voices, 1 set of hands or many,(yes these are metaphors and thoughts not delusions or hallucinations) some quite as a mouse in the farthest recesses of your mind, only showing themselves as illusions in distorted dreams and nightmares,until your brain recognizes 1 or more and finds the trigger thus finally remembering where it fits into this puzzle of chaos and destruction that is your life.

recognizing and knowing as many of your triggers as you can, may help ease the reaction and over time as you gain more understanding of your triggers and your reactions the more space you can put between them the better. however it's important to remember that at anytime, without warning something  can happen in your life that can close that gap in an instant and you have to practice coping techniques even when you have no symptoms in an effort to retrain your brain and body to respond to a new event as a single event thus dismantling the triggers to previous traumas so as to better understand the reality of the level of a new trauma.

ok,it's 3am and i awoke from a strange dream with all of this swirling inside me about 11:30 pm... i can no longer tell if i'm making any kind of sense right now due to the exhaustion of my brain and the need for more sleep. even so i am posting this now,though i may change it another day.

THANK YOU FOR YOUR TIME AND UNDERSTANDING!!! <3

Wednesday, March 14, 2012

to president BARACK OBAMA this is just 1 life affected by 1 rare disease


A rare disease in the smallest of patients

By Madison Park, CNN
updated 7:45 AM EDT, Wed March 14, 2012
Brantley Jacobs has been diagnosed with Klippel-Trenaunay syndrome.
Brantley Jacobs has been diagnosed with Klippel-Trenaunay syndrome.

STORY HIGHLIGHTS
  • Brantley was born with 25% of his birth weight coming from a malformed leg
  • Young parents are usually the people who have to deal with rare diseases
  • In cases like these, parents often feel frustrated and helpless
(CNN) -- Haleigh Jacobs and her husband, David, have spent the last two months in the hospital, hovering over their 8-pound newborn, Brantley. He has yet to spend a day outside the incubator, smell fresh air or go home to meet his siblings.
Brantley's right leg juts out like a reddish brown lump of flesh that is thicker than his torso. His toes, indistinguishable from each other, look like dimples. The leg is studded with damaged blood vessels, veins and capillaries that look like raisins. Another lump protrudes from his abdomen.
"It is frustrating," his mother said. "For one, being a parent, you feel helpless, and then, you've got a baby that's hurting."
But this is an improvement from what Brantley has endured. He had a rectal tear that spontaneously gushed blood and fluids. That has been healing.
For families dealing with rare diseases, the road to a diagnosis is a long, winding one, riddled with confusion, complications and expenses. Although pop culture has left an impression that there is a genius doctor somewhere, like the fictional Dr. House who can identify and cure rare diseases, the reality is far different.
After the diagnosis, the lack of answers or effective treatment can be completely unsatisfying.
"Two-thirds of the people with rare diseases are children, because these are genetic diseases," said Mary Dunkle, the vice president for communications at the National Organization for Rare Disorders. "It's very often young parents with a new baby and they're very, very worried and very much in unfamiliar territory."
On December 28, the Jacobses, who are from Blanchard,Oklahoma, welcomed their second son. Brantley Lane Jacobs was born eight weeks early.
"I didn't get to see him," Haleigh Jacobs said, about after the birth. "But I saw his leg. It was hard not to see his leg. ... I started bawling."
Brantley weighed 4 pounds, 3 ounces. His leg weighed 1 pound.
Haleigh Jacobs cuddles her 2-month-old son, Brantley, who has severe medical problems.
Haleigh Jacobs cuddles her 2-month-old son, Brantley, who has severe medical problems.
The leg had puffed up because of a buildup of blood vessels, called hermangioma. Theskin of his legs had stretched thin to encase the increasing swelling and had become fragile like a burn patient's. The leg required constant wrapping and moisturizing to prevent chapping and bleeding.
Jacobs had learned before giving birth there was something unusual about her third baby. Twenty-one weeks into her pregnancy, she and her husband went to get an ultrasound to find out whether the baby was a boy or a girl. The specialists noticed an unusual lump on the fetus.
When he was delivered, Brantley's physical state was perplexing.
The doctors were baffled, Jacobs said. The swelling on Brantley's leg kept growing. Every time Brantley was moved or his leg touched, he would wince or scream.
The hole near his rectum would bleed whenever someone tried to wipe him during a diaper change.
Brantley has never been breastfed, because he's too fragile. His mother gingerly feeds him with a bottle, worried that any jerks or sudden movements could bother his skin.
His doctors in Oklahoma called specialists and sent images and test results to other pediatricians and specialists around the country. Maybe, one of the doctor speculated, Brantley had Klippel-Trenaunay syndrome, a rare childhood genetic disease.
Another doctor suggested it could be CLOVES Syndrome, another rare vascular disease that causes malformations and has only been found in 80 people. Another doctor thought it could be a combination of both diseases, possibly a new condition.
There are almost 7,000 rare diseases in the United States, according to the National Organization for Rare Disorders.
The swelling in Brantley\'s leg increased after birth.
The swelling in Brantley's leg increased after birth.
These tend to be complex diseases," said Dunkle. "It's really not in any way bashing the professional medical community. People have a hard time getting a diagnosis, it's obviously distressing and difficult for families and patients."
The parents wanted to find someone who could help their son. Haleigh Jacobs e-mailed doctors and worked with doctors in Oklahoma to get referrals to other hospitals.
In mid-February, Brantley was referred to Arkansas Children's Hospital in Little Rock. Jacobs took a leave from her job as a dispatcher for the police department and so did her husband, who works for a company that locates and marks underground gas and electric lines.
Families are often encouraged to go to teaching hospitals on the theory that they will have a better chance there of interacting with medical professionals who may have seen something similar to their situations.
When Brantley arrived in Arkansas, the diagnosis was Klippel-Trenaunay syndrome, a rare disorder that appears in one in 100,000 children, said Dr. Gresham Richter, associate professor at the University of Arkansas for medical sciences.
Richter sees about 30 cases a year at the hospital. The way Brantley presented with the disease was so unusual Richter said he has only seen it in two other patients.
Some Klippel-Trenaunay patients have internal bleeding because of the malformation of blood vessels in organs such as the liver, heart, lungs and rectum. They usually have port wine marks on the skin and the growth of masses of blood vessels and varicose veins.
"It's usually a cutaneous birthmark that is red and inflamed. It becomes bigger and bigger," Richter said. "It usually does not appear at birth like Brantley's does. It's a rare form of KTS, and the one that is most dangerous because it grows very quickly."
The swelling in Brantley's leg is caused by accumulating lymphatic fluids collecting in his leg. The muscles, tendons and bones in Brantley's right leg are being infiltrated, Richter said.
There is no cure for the disease. This happens often in orphan and rare diseases.
"The worst thing is to get a diagnosis and find out there's no treatment, no support group," Dunkle said. Sometimes that's how patient advocacy groups are formed, she added.
Although the appearance of Klippel-Trenaunay syndrome is shocking, Richter said patients can have a normal life expectancy.
Brantley will need laser surgery continually to remove the damaged blood vessels in his leg. The surgery does not address the underlying cause of the disease, which is believed to be genetic.
His leg will have to be amputated at some point, Richter said.
Brantley's parents are seeking a second opinion and another hospital as they contemplate their next step. They brought Brantley home for the first time this week. But the homecoming has been overshadowed by a looming medical decision.
"We have been going back and forth," she said. "Do we tell them to take the leg? Is he going to be mad at us when he gets older?"
Her husband added that when they first learned of the malformation during pregnancy, they were given two options: abort Brantley or give birth and see what happens.
"That was an easy decision on our part," he said. "This whole leg amputation, it has been left up to us. That's a tough decision because the decisions we have to make have nothing to do with us. It's for the betterment of him. Do we leave the leg and hope someone can fix it three or four years down the line?"

Monday, March 12, 2012

2nd LETTER TO PRESIDENT OF THE UNITED STATES BARACK OBAMA continued...

GOD GRANT ME THE SERENITY TO ACCEPT THE THINGS I CANNOT CHANGE, THE COURAGE TO CHANGE THE THINGS I CAN AND THE WISDOM TO KNOW THE DIFFERENCE ...


                                                                        PLEASE!!!!


i came onto twitter and then started this blog to try to raise awareness of MOYAMOYA DISEASE in hopes that others would not go through the same things i have for almost twenty years. especially infants and children. http://www.mendeley.com/research/moyamoya-disease-early-infancy-case-report-literature-review/#page-1  one of the authors of this paper,OSAMA O ZAIDAT is my neurology specialist at THE WISCONSIN MEDICAL COLLEGE AND FROEDTERT HOSPITAL MILWAUKEE.


i am at least forth generation of strokes and brain aneurysms and there is no way of knowing if any of those before me had  MOYAMOYA DISEASE. from 1993 to 2008 i was misdiagnosed.


there was not much information about MOYAMOYA when i was diagnosed, then in april of 2009 that started to change when medical researchers in texas found a single gene defect http://www.health.am/ab/more/single-gene-defect-can-lead-to-stroke/  http://www.bio-medicine.org/biology-news-1/Single-gene-defect-can-cause-stroke--other-artery-diseases-8267-1/

since that time (to the best of MY knowledge) researchers have found 2 more genes associated with MOYAMOYA and several other diseases sometimes associated with MOYAMOYA  http://emedicine.medscape.com/article/1180952-overview#aw2aab6b2b2aa  http://www.mendeley.com/research/seckel-syndrome-and-moyamoya/  http://www.ncbi.nlm.nih.gov/pubmed/20358609  http://www.pr-inside.com/print813606.htm  http://content.karger.com/produktedb/produkte.asp?typ=fulltext&file=000204907  http://www.brain-aneurysm.com/mmd.html

I DO NOT UNDERSTAND HOW STATISTICS CAN MEASURE WHICH DISEASES ARE RARE WHEN THE MAJORITY OF DOCTORS HAVE NEVER HEARD OF THEM AND THEREFORE NOT BEING QUALIFIED TO TEST FOR, TREAT OR EVEN RECOGNIZE THESE DISEASES !!!!!!!!


ALSO ALL PATIENTS OF  THESE 7,000 (  http://rareproject.org/RARElist/  ) RARE DISEASES COLLECTIVELY ADDS UP  TO A LARGE GROUP OF VOTERS!!!!!


please feel free to send a comment anytime,i would appreciate your  opinions!!!!!! ;)

Saturday, March 10, 2012

A LETTER TO PRESIDENT BARACK OBAMA

dear  mr. president,i learned in 2008 that i have MOYAMOYA DISEASE, in 2009 it was decided i would have brain surgery, 2010 it was decided i would NOT be having brain surgery after one report from 1996 was finally found in my medical records comparing  an MRI in 1996 to an MRI in 1994.the report from 1996 perfectly described my having moyamoya disease as far back as the MRI done in 1994. i was never told i had blockages forming in my right internal carotid artery (or that surgery was suggested) or that i had blockage forming in my right mid cerebral artery or that i had tangled blood vessels. somehow all of this along with a brain bleed in 1993 was considered a one time vascular event. i am dyslexic with half a brain and even i can see the math does not add up.
 it was suggested to me that i should pursue a medical malpractice suit as this was definitely more than simple misdiagnosis. i spoke on the phone with several top medical malpractice attorneys and the all said the same thing. WISCONSIN MEDICAL MALPRACTICE STATUTE OF LIMITATIONS IS 3 TO 5 YEARS AFTER THE EVENT AND HAD NOTHING TO DO WITH WHEN THE PATIENT FINDS OUT ABOUT IT. THEY ALL SAID IT'S AN UNFAIR LAW BUT IT'S STILL THE LAW.IN MY OPINION AN UNFAIR LAW AS SUCH IS UNCONSTITUTIONAL.
ALSO,I BELIEVE THERE SHOULD BE NO STATUTE OF LIMITATIONS ON MEDICAL MALPRACTICE. THEY PAY INSURANCE FOR IT, THEY TAKE AN OATH TO DUE NO HARM...THEY SHOULD BE HELD RESPONSIBLE FOR THERE ACTIONS.
THE ONLY ONES WHO BENEFIT FROM THESE LAWS ARE THE INSURANCE COMPANIES AND THE DRs. WHO KEEP PRACTICING AS LONG AS THEY ARE NOT CAUGHT IN TIME,WHO KNOW'S HOW MANY ARE REPEAT OFFENDERS?

FEB 2011 i volunteered for clinical testing because my case is so different from other cases,i have basically blown all statistics for adult MOYAMOYA DISEASE out of the water.both my specialist and i were very excited about doing clinical tests on me,hoping  i may hold some answers they have not yet seen. i also signed legal papers a few months ago to donate my body (when i'm done with it,lol) for further research of MOYAMOYA DISEASE,STROKE AND OTHER RELATED VASCULAR DISEASES. http://emedicine.medscape.com/article/1180952-overview#aw2aab6b2b2aa this is just one article about MOYAMOYA DISEASE and other diseases found to be in association with MOYAMOYA!!!!!!

I AM ANGRY!! I AM HURT!! I AM DEVASTATED TO THINK IF MY BODY HOLDS EVEN ONE ANSWER TO HELP TREAT ONE OTHER PERSON OR TO SAVE ONE LIFE THAT ANSWER MAY BASICALLY BE THROWN AWAY!!

7,000 rare diseases list 2012 THERE IS NOTHING YOU OR ANYONE ELSE CAN SAY TO ME THAT COULD JUSTIFY CUTTING RESEARCH FUNDING FOR RARE DISEASES,WITH IT YOU TAKE AWAY ALL HOPE NOT JUST FOR US BUT FOR EACH PERSON AFTER US. YOU ARE DENYING MEDICAL TREATMENT TO MEDICAL MINORITIES !! WHERE ARE OUR RIGHTS?????
http://www.prnewswire.com/news-releases/the-rare-list---you-must-see-it-to-believe-it-138468089.html THIS IS DISCRIMINATION OF MEDICAL MINORITIES AND PEOPLE WITH DISABILITIES!!!

and the meek shall inherit the earth...revised

       seems the world is turning backwards,the oceans are flowing inland, 
droughts are lasting longer,growing larger only to be followed by floods that wash away anything and anyone left in their path. earthquakes in unusual places. tsunamis, tornado outbreaks, hurricanes all bringing more mass destruction, with death tolls as we ourselves have never seen before,
the climate is changing we must adapt.
       war, genocide, greed, hate, fear and petty bickering bring more destruction and devastation devouring more time, energy, money and lives. all while it could be put to better use saving lives! no one is winning here,everyone is losing! violence begets violence, hate begets hate. has history taught us nothing? with all our planning for the future we forget the past and ignore today...
       but NOW is the time for a meeting of the minds that what we have been doing is not working. before it is too late we must live and let live, learn to work together to make what SEEMS impossible,possible!
         we must lay our weapons down, set aside our differences ...we must pick up our tools and clean up,rebuilding and replenish what has been lost.i'm not talking bigger's better or who has the most wins. ...i'm talking,saving the most lives,while creating the best quality of living for everyone everywhere!! not with the most expensive,not with the most elaborate...but,the most humble...most basic necessities for all first and foremost.
           we must have equality,honesty and acceptance in health care,nutrition, housing, education and medical research for all. we must have acceptance,respect and equality of race, age, gender,disability,religion, sexual orientation, same sex marriage and so much more!!!!! 
ALSO:what good comes from spending money to find more planets, as we self destruct?