Be your own advocate!

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MY NAME IS JENNIFER. I'M 39 YEARS OLD AND AM FINALLY IN LOVE AND FEEL LIKE I FOUND SOMEONE I WANT TO SPEND MY LIFE WITH. THE ONLY PROBLEM IS I HAVE CHIARI. I ALSO RECENTLY FOUND I MOST LIKELY HAVE EDS, POTS, MCAS, AND IC. THESE ARE A LOT OF ABBREVIATIONS BUT IF YOU GOOGLE THEM YOU WITH FIND WHAT IT IS I'M TALKING ABOUT. MY CHIARI DIAGNOSIS IS WHAT LED ME ON THE PATH OF KNOWLEDGE THOUGH. I KNEW SOMETHING WAS WRONG WITH ME PRETTY MUCH MY WHOLE LIFE. I COMPLAINED A LOT AND WAS CONSIDERED A HYPOCHONDRIAC. THAT'S WHY I STOPPED COMPLAINING. IT MAY BE WHY I'M FINALLY BEING DIAGNOSED AT 39. I WENT TO MY DOCTOR IN 2013 WHEN I FINALLY HAD ENOUGH. LET ME JUST TELL YOU IT IS HARD. DOCTORS ARE UNEDUCATED IN MANY OF THESE CONDITIONS. AND SOME THAT YOU THINK WOULD BE BECAUSE THEY HAVE THE NAME CHIARI ON THIER SIGN ARE NOT SPECIALISTS. MY ADVICE IS TO JOIN A FORUM AND SOAK IN THE INFORMATION. BE PREPARED TO HEAR MANY OPINIONS. SOME ARE VERY STRONGLY OPINIONATED AND IT MAY SEEM AS IF YOUR BEING ATTACKED IT YOU DON'T GO WITH THIER OPINIONS. MY ADVICE UTILIZE YOUR BLOCK BOTTOM ON FACEBOOK. ALSO UNDERSTAND THAT ALOT OF THESE PEOPLE ARE RIGHT. THEY HAVE BEEN HURT BY DOCTORS AND ARE VERY PASSIONATE ABOUT IT SO THEY MAY COME OFF AS MEAN AND NASTY. I ASSURE YOU, MOST OF THEM JUST WANT YOU TO RECEIVE THE RIGHT HELP FROM THE RIGHT PEOPLE. IF I TELL MY WHOLE STORY THIS WOULD BE A BOOK SO I'LL TELL YOU THIS DON'T BACK DOWN. KEEP GOING STRONG. IF IT SEEMS LIKE YOUR GETTING NO WHERE FAST BECAUSE YOU HAVE TO KEEP 'FIRING' DOCTORS TO GET TO THE ONE THAT KNOWS WHAT YOU HAVE THEN SO BE IT. IT'S NOT FUN BUT BE SURE TO GET YOUR PAIN SOMEWHAT UNDER CONTROL THE BEST YOU CAN. WHETHER IT BE NARCOTICS OR ACUPUNCTURE. OILS OR MEDITATION. WHATEVER IT IS GET IT. THEN BUCKLE DOWN AND GET IN THE GAME. IT'S A LONG ONE BUT IT'S WORTH IT OR AT LEAST I'M SURE IT WILL BE. SEE I FOUND OUT 9 MONTHS AGO AND AM STILL LOOKING FOR ANSWERS. HOPEFULLY I WILL HAVE SURGERY 4 MONTHS FROM NOW. HAVING MCAS HAS DELAYED MY TREATMENT. IT ALSO GAVE ME A CLEAR UNDERSTANDING OF WHAT MY OTHER ISSUES WHERE ATTRIBUTED TO. I'LL HAVE CHANGED MY ENTIRE DIET AND WILL BE THROWING OUT MANY PRODUCTS IN MY HOME MAKING ME SICK. THIS IS A LIFE MAKEOVER BUT ONE I NEED AS WELL AS WANT. THANK YOU FOR READING. I INTEND TO STAY IN THE FORUMS AS LONG AS I FEEL THERE IS A NEED. EVEN ONCE MY NEEDS ARE MET TO HELP OTHERS. MAYBE I'LL SEE YA AROUND ONE DAY! GOD BLESS!