Watch “My life with Ehlers-Danlos, Chiari, and POTS” on YouTube Ehlers~Danlos, Chiari, POTS SISTER AWARENESS❣❣❣


I wanted to share with you all because see January Loddeke’s video here speaking on Ehlers Danlos Disease well it’s associated with chiari and POTS and some people has all them together and yes life is painful with these because I live it everyday I wake up lordly how mercy we sometimes wish that we wasn’t so sick but we are and see how easy it is for to get distracted during the video and see our moods can change in a spilt second and we have no control over it and that’s why stay to myself and not making to many comments on social media sites because we don’t have no control over things that is happening to our bodies please understand that before judging us or calling crazy because the lower portion of our brains are sitting so close to our brain stems and wish we had control over it but sadly we don’t and see with our sickness we are more likely to be referred to as TNT waiting to explode because our brains are normal like regular people’s brains are AND SEE IN 2009 MY NEUROLOGIST AND NEUROSURGEON TOLD ME AND MY HUSBAND FOR ME TO LIVE MY LIFE THE BEST I COULD BECAUSE THEY COULD NOT DO ANYMORE JUST KEEPING ME COMFORTABLE SOME WHAT WITH THE PAINFUL SICKNESS THAT LIVES INSIDE OF ME BUT WE AREN’T​WILLING TO SETTLE FOR THAT WE KEEP ON SEARCHING FOR THAT DOCTOR TO TELL US HE CAN HELP ME UNTIL THEN THIS WHAT I WAS DEALT AND LIVING WITH EVERYDAY UNTIL THAT DOCTOR CAN HELP ME❣❣❣❣ BECAUSE ME AND MY HUSBAND WE ARE NOT WILLING TO ACCEPT A DEATH SENTENCE FOR ME THAT’S REASON WHY WE ARE FIGHTING TO FIND A CURE OR FIND A DOCTOR THAT CAN HELP ME ❣❣❣

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This entry was posted in awareness, chronic illnesses, Cure Chiari, Cure Me, hurt, anger, miss understood, life, love, motivation, music video, poetry on by .

About Southern Thang Now Jeff~Tina's Blog

HELLO I'M JEFF HER HUSBAND MY WIFE DOESN'T GET ON THIS SITE ANYMORE BECAUSE OF HER HEALTH AND RARE BRAIN DISEASE WILL NOT ALLOW HER TO DO YES I AM AND HAVE BEEN DOING THE POSTING AND COMMENTING BACK AND ON HER BLOG SO DON'T BE THINKING YOU ARE COMMUNICATING WITH HER BECAUSE YOU HAVE NOT BECAUSE IT'S BEEN NO ONE BUT ME OR OUR CHILDREN~~~~~~~~~~~~~ I am me and the best person I can be and also I love to write poetry and have published a book...But most importantly I am chiarian with a rare brain disease called Arnold Chiari Malformation Disease and it has no cure as of yet for more information on chiari visit link I'm providing you (www.conquerchiari.org) and each day is a struggle and battle with my chiari malformation disease but someone who has the guidance of God I will make it through to another day and another tomorrow and just remember that God loves you to and regardless be happy being you and don't change yourself for no one because you cannot please everyone so don't die trying to... And I love to write and share my works with y'all but sometimes my brain becomes confused and I make some mistakes but I surely will correct them and have a blessed day... {THIS BLOG HOLD'S PIECES THAT'S HUMOUROUS, FUNNY, SILLY, KILLER, MURDEROUS, LOVE ANIMALS, PICTURES, SENSE OF HUMOR PIECES, RED~NECK, CONFEDERACY STUFF, COUNTRY, DOWN HOME SOUTHERN GOODNESS, NATIVE AMERICANS STUFF AND CULTURE, ART WORK, LOVE, LIFE, CURE, INCURABLE DISEASES CHRONIC, ILLNESSES, INVISIBLE ILLNESSES, QUOTES, POEMS, POETRY} ~~~~{NO NON~SENSE WILL NOT BE TOLERATED OR FLIRTING AROUND WITH PEOPLE ON THIS SITE WILL NOT WORK BECAUSE I AM HAPPILY MARRIED AND SAME GOES FOR MY HUSBAND WHOM WRITES ON MY BLOG SO KEEP THE TONGUE CONCEALED AND KEEP THE DIRTY NASTY THINGS PICTURES WHATEVER CAN YOU SELF CUZ I DON'T WANT TO SEE THAT EITHER SO DON'T BE SENDING THAT TO MY PERSONAL EMAIL BECAUSE YOU'RE TOO MANY CRAZY PSYCHO PEOPLE OUT HERE THE DON'T MIND HARASSING AND THREATENING YOU OR YOUR FAMILY BECAUSE THESE SITES YOU CAN REPORT THEM BUT THEY'RE STILL KEEP COMING BACK YOU CAN'T EVEN BLOCK THEM SO THAT'S THE REASON WHY I'M ADDING THIS AGAIN AS MY ABOUT ME SO PLEASE DO UNDERSTAND I'M NOT TRYING TO OFFEND ANYONE}~~~~{BUT LET ME ADD ALSO THAT THE SEPTEMBER IS AWARENESS MONTH FOR CHIARI THE COLOR IS PURPLE FOR RIBBON AND CLOTHING WE HOLD WALKS ACROSS AMERICA EACH YEAR TO TRY TO RAISE MONEY UP FOR FINDING TO FURTHER THE RESEARCH ON FOR CURE BECAUSE THERE'S TOO MANY PEOPLE WITH CHIARI OR STUFF THAT IS RELATED TO CHIARI THAT IS DYING WITHOUT THE DOCTORS KNOWING WHY THEY JUST RULE IT OUT AS CHIARI SO PLEASE FEEL FREE AND LEARN ABOUT CHIARI BECAUSE IT'S A DAMAGING THING THAT MOST PEOPLE HAVE BUT THEY DON'T KNOW THEY HAVE IT THEY CAN BE A CARRIER THEIR WHOLE LIFE AND NOT SHOW NO SYMPTOMS OR SIGNS BUT NOT CONTRACT AND ON THE WAY THEY CAN FIND IT IS BY CT SCAN OR MRI SCAN BUT THERE'D HAVE TO BE SPECIFICALLY LOOKING FOR CHIARI NOT UNLESS IT WAS YOU KNOW THAT BAD AND IT SHOWS UP BUT THERE'S I THINK FOUR TYPES OF CHIARI TYPE 1, 2, 3, 4 JUST REMEMBER THAT A CHIARI AND LIFE IS NEVER THE SAME WE DON'T FEEL THE SAME SYMPTOMS WE DON'T FEEL THE SAME PAINS OR PAINS OR DIFFERENT OR SICKNESSES DIFFERENT EVEN THOUGH IT'S THE SAME DISEASE IT AFFECTS EVERYBODY IN DIFFERENT WAYS AS WE ALL RAISE AWARENESS THROUGHOUT THE YEAR NOT ONLY IN SEPTEMBER BUT THE WHOLE YEAR BECAUSE WE NEED TO CURE JUST LIKE OTHER DISEASES THEY NEED CURES SO THAT'S MY QUEST IN MY THING THAT I'M TRYING TO CONQUER IS TRYING TO HELP FIND A CURE FOR CHIARI SO HOPEFULLY MAYBE ONE DAY THAT THAT WILL HAPPEN BECAUSE IT IS HEREDITARY AND FAMILIES THEY JUST RELEASED A FEW YEARS AGO FROM THE MAYO CLINIC AND DUKE UNIVERSITY FROM WHERE THEY WAS DOING RESEARCH AND IT PROVIDES THE RESEARCH THAT IT IS HEREDITARY AND FAMILIES BECAUSE CHIARI WHEN YOU GET IT YOU GET IT FROM THE WOMB WHEN YOUR MOTHER IS PREGNANT WITH YOU INSIDE THE WOMB AND THEN THIS PASSED ON TO THE UNBORN FETUS THAT'S A LITTLE BIT ABOUT CHIARI AND ABOUT ME...... BAD OR NEGATIVE COMMENTS WILL NOT BE ALLOWED BECAUSE IT CAN CAUSE UNNEEDED STRESS CAUSING LOWER PART OF MY BRAIN TO SWELL AND COULD CAUSE IT TO IMPACT WITH MY BRAIN STEM KILLING ME DO PLEASE KEEP COMMENTS NICE THAT'S NOT TO MUCH TO ASK OF Y'ALL IT'S A SHAME THAT THIS SITE LETS SCAMMERS AND SEXUAL HARASSER PEOPLE STAY UP ON THIS SITE AND NOT DO ANYTHING AND YOU CAN'T EVEN BLOCK THE DEAL HOLES YOU HAVE TO PUT UP WITH IT ON THING TO DO IS PROJECTOR COMMENTS WHAT IS WRONG WITH THIS SITE AND THEN NOW HE'S INVADING MY LIFE AND EVADED MY WIFE'S PERSONAL LIFE AND THEN HE WANTS APOLOGETIC VIDEO FROM ME BECAUSE HE WANTS TO SAY IT SEE ME SAYING SORRY FOR YOU CUZ MY WIFE TO HAVE A MINI STROKE BECAUSE OF YOUR MESS BECAUSE YOU DIDN'T ASK WHO YOU WAS TALKING TO I PUT MY WIFE'S WRITING UP ON THIS BLOG BECAUSE SHE'S TOO SICK TO GET UP EACH DAY AND POST IT BUT SHE LOVES TO WRITE BUT SHE CAN'T WRITE AND FEELING LIKE SHE HER LIFE IS BEING INVADED AND SO WAS MINE AND THIS SITE NOT DOING ANYTHING ABOUT IT WE DON'T EVEN FEEL COMFORTABLE TO GET ONLINE ANYMORE WITHOUT THIS DOUCHEBAG INVADING OUR PERSONAL LIVES AND STEALING PICTURES OF MY WIFE AND THEN WANTING PICTURES OF ME WHAT KIND OF SICK PERSON IS SOCIETY WANTS A PICTURE OF YOUR WIFE'S HUSBAND WANTED NEEDS TO SEEK MENTAL EVALUATION HELP IT THROUGH A PSYCHIATRIST

4 thoughts on “Watch “My life with Ehlers-Danlos, Chiari, and POTS” on YouTube Ehlers~Danlos, Chiari, POTS SISTER AWARENESS❣❣❣

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