A bad day physically...

WELL ALL HERE IS ANOTHER SOBERING POST, FOR THOSE WHO WRITE THANKING ME FOR INSPIRING YOU, YOU MIGHT WANT TO MISS THIS ONE :) I HAVE NEW AND SCARY SYMPTOM'S HAPPENING, AT FIRST I THOUGHT IT WAS A ONE TIME THING BUT IT'S NOT GOING AWAY. EACH FEW MONTHS TO A YEAR SOMETHING "BIG" CHANGES IN MY HEALTH AND I'M PRAYING THIS ONE WILL PASS. FIRST I WANT TO SAY I FEEL SAFE WRITING HERE FOR NONE OF MY FAMILY READS IT SO I DONT NEED TO BE CONCERNED ABOUT THEM WORRYING ABOUT MY "EMOTIONAL" STATUS, HECK THEY ALREADY ARE AMAZED AT HOW I HANDLE MY LIFE AS IT IS. STILL, I DON'T LIKE SCARING THEM. TODAY IS A BAD DAY, FOR ME TO CRY AND TO WRITE HERE LIKE THIS, WELL IT'S A BAD DAY. I CANT BEND MY ARMS AT THE ELBOW OR ANYWHERE FROM MY HANDS TO MY SHOULDERS WITHOUT MY FINGERS WRINKLING UP, TURNING BLUE, MUSCLES TURN HARD AS A ROCK AND PAINS SHOOTING DOWN MY ARMS. SAME THINGS GOES WITH MY LEFT LEG FROM THE HIP BONE DOWN. MY MUSCLES FEEL LIKE THEY ARE ALL IN A CRAMP BUT THEY LAY THERE FLAT AND IF I TRY AND FLEX THEM THE PAIN IS UNBEARABLE AND THE MUSCLES DON'T MOVE. THIS IS DIFFERENT FROM MY CARPEL TUNNEL, NORMAL LUPUS STUFF, NERVE IMPINGEMENT'S IN MY SHOULDERS & RAYNAUDS...IT'S LIKE I'M CUTTING OFF MY CIRCULATION AND MY MUSCLES ARE DYING. IT'S HAPPENING WITH MY NECK UP INTO MY FACE AND HEAD TOO. I GET THESE SHARP SHOOTING PAINS IN MY HEAD, RIGHT SIDE OF FACE GOES NUMB, EYE'S HURT, CANT SEE WELL AND MY THOUGHT PROCESS GOES SOMEWHAT HAYWIRE. DURING THE PAST 20 YEARS AS I WATCHED MY BODY CHANGE I ALWAYS STILL HAD MY BRAIN, MY MENTAL & EMOTIONAL STRENGTH BUT NOW I FEEL LIKE I'M LOSING CONTROL OF THAT TOO. I HAD TO RE-READ THIS MANY TIMES FOR I'D WRITE A WORD THAT MADE NO SENCE AT ALL. I'LL BE TALKING TO SOMEONE AND A WORD COMES OUT THAT HAS NOTHING TO DO WITH WHAT I'M SAYING. FOR THOSE WHO ARE SAYING "WHY DO YOU GO TO THE HOSPITAL" YES, I COULD BUT THEY WOULD BE LOSS & OVERWHELMED AND ALL EVASIVE TESTS JUST GETS ME WORSE. I WANT TO GET A FULL BODY SCAN WHEN I CAN AFFORD IT THAT IS. THE MIDDLE PART OF MY DAY TODAY WASN'T BAD, I TOOK MY DOG FOR A GOOD SIZE WALK BUT ONCE I STARTED WORKING ON MY HOBBIES ANOTHER EPISODE HAPPENED. THIS MIGHT SOUND DRAMATIC BUT IT'S LIKE I'M OUTSIDE OF MY BODY WATCHING MYSELF DYING. YES, I'VE BEEN TOLD MY LIFE WILL BE CUT SHORT DUE TO MY HEALTH BUT WHAT EVER IS GOING ON IS SOMETHING THE DOCTORS DON'T KNOW WHAT IT IS. MY FEAR & GUT TELLS ME BY THE TIME THEY DO IT WILL BE TO LATE...I ACTUALLY FEEL LIKE I'M SLIPPING AWAY & MUCH SOONER THEN I THOUGHT. I'VE PRIDE MYSELF ON STAYING INDEPENDENT BUT I DON'T KNOW HOW MUCH LONGER I'LL BE ABLE TO. GOING DOWN FROM GOOD & BAD DAYS TO GOOD AND BAD HOURS IS REAL TOUGH AND IT'S NOT THE PHYSICAL PAIN IT'S THE EMOTIONAL. AT THE MOMENT I'M SO SCARED ...I HAVE NO IDEA WHAT VASCULITIS CAN DO TO THE BODY IN WHOLE. IT'S NOT JUST IN MY LEGS, IT'S EVERYWHERE. MAYBE IT'S NOT THE LUPUS OR VASCULITIS OR ONE OF THE OTHER DISORDERS . SEE I KNOW WHAT THOSE ARE LIKE AND WHAT THEY CAN DO BUT THIS IS UNKNOWN.... I MISS ME, I MISS MY MIND BEING STRONG AND THINKING CLEARLY AND PUSHING THROUGH THE PAIN AND STILL LIVING LIFE. NOW WHAT EVER IS GOING ON IS TAKING THAT AWAY FROM ME AND THAT PISS'S ME AND SCARES THE HELL OUT OF ME. MY FOLKS KNOW WHATS GOING ON PHYSICALLY AND WE ALL WONDERED WHICH "SPECIALIST" TO GO SEE FOR THIS, BUT WHY??? I'VE BEEN TOLD BY SO MANY DOCTORS THAT THEY NEVER MET SOMEONE WHO KNEW THERE BODY AS WELL AS I. SOMETHING INSIDE IS TELLING ME TO DO NOTHING AND WHEN MY TIME IS UP IT'S UP UNLESS I HAVE A SITUATION LIKE A HEART ATTACK THEN GO TO THE HOSPITAL. THAT OR SOMETHING THAT WILL MAKE THE SITUATION CLEARER FOR THE DOCTORS TO SEE AND NAIL DOWN. I'VE BEEN WONDERING A LOT LATELY, IF IT WASN'T FOR MY PAIN CONTROL MEDICATION AND PREDISONE WHAT SHAPE I'M REALLY IN?? FOR THOSE WHO WATCH THE SHOW "HOUSE" OR "MYSTERY DIAGNOSIS" WELL THOSE PATIENTS ARE ME. AS YOU KNOW OUR GENETICS ARE MADE UP OF SO MANY THOUSANDS OF DIFFERENT THINGS, TO FIND THE 1 WRONG ONE WOULD TAKE FOREVER (as my doctor puts it)I HAVE SO MANY DISORDERS BUT THEY DON'T KNOW WHATS THE CAUSE OF THEM ALL. I FIGURE WHEN I'M BED RIDDED LIKE THE CHARACTERS ON "HOUSE" THEN I'LL LET THEM POKE AND PRODE AGAIN. YOU HEAR PEOPLE SAY "DON'T GIVE UP, KEEP GOING TILL YOU FIND THAT 1 DOCTOR THAT CAN HELP. WELL THAT'S GOOD AND WELL FOR SOME PEOPLE AND AGREE FOR MOST PEOPLE BUT WHEN YOU'VE ALREADY SPENT MANY YEARS OF YOUR LIFE DOING THAT IT COMES TO A POINT WHERE IT'S TIME TO STOP AND LIVE LIFE. SO FOR THOSE OF YOU READING THIS THAT'S WHAT I'M DOING...LIVING LIFE TO THE DEGREE THAT I CAN. FOR THOSE THAT KNOW ME, YOU ALSO KNOW I USUALLY LIVE LIFE WITH A POSITIVE ATTITUDE AND DON'T COMPLAIN. ON ANOTHER NOTE, I'M GOING TO WRITE AN ENTRY ABOUT MICAS, THE REAL MANUFACTURER'S AND THE DIFFERENCE BETWEEN THEM AND COMPANIES THAT PROVIDE MICA'S. I'M NOT GOING TO SAY NAMES OR AT LEAST TRY NOT TO:) NOR AM I SAYING ANYTHING BAD ABOUT THEM SO DON'T GET ME WRONG, BUT THERE IS INFORMATION PEOPLE NEED TO KNOW ABOUT "MICAS" AND A "FINISHED" LOOSE MINERAL SHADOW. THIS IS THE PART OF ME I'M HOLDING ONTO, THE PART THAT LIKES HELPING PEOPLE. I HATE SEEING PEOPLE GET RIPPED OFF, BEING ABLE TO HELP PEOPLE UNDERSTAND HOW COMPANIES LIKE THIS WORK IS SOMETHING I ENJOY AND FEEL SHOULD DO. THEY ALL BUY FROM THE SAME MAIN MANUFACTURERS BUT GIVE THERE UNFINISHED MICAS DIFFERENT NAMES AND THAT'S WHERE MY PERSONAL ISSUE IS. I LIKE THESE COMPANIES AND AM GLAD WE HAVE A PLACE TO BUY IN BULK IF NEEDED BUT INFORMATION WILL SAVE YOU A LOT OF TIME AND MONEY. JUST LIKE THE FAKE MAC PIGMENTS, I HELPED MANY PEOPLE WITH LEARNING HOW TO SPOT THEM. I FEEL I WAS PUT HERE TO HELP PEOPLE AND THAT'S GETTING HARDER SINCE I NEED MY BODY TO WORK TO BE ABLE TO DO THAT. I'M VERY SORRY FOR MY SPELLING AND USING A WRONG WORD WITHOUT KNOWING IT ALONG WITH THE ALL CAPS, THE CAPS MAKES IT MUCH EASIER TO TYPE SINCE I ONLY USE 2 FINGERS. BY THE WAY INCASE MY BUYERS ARE READING THIS, I ONLY FILL ORDERS DURING MY GOOD HOURS OF THE DAY SO PLEASE DONT LET WHAT I WRITE HERE DOUBT MY ABILITY. I STILL GIVE EACH AND EVERY ORDER 100% AND IF I CAN'T THAT DAY THEN I DONT WORK. I KNOW IT'S HARD BUT TRY AND KEEP "THIS ME" HERE SEPERATE FROM THE BUSINESS ME.

You'd think they'd get it.....venting

WELL TODAY I'M HERE TO VENT...MY MOM CALLED THIS MORNING AND SAID SOMETHING THAT I NEED TO GET OFF MY CHEST. MY MOM AND I ARE VERY CLOSE AND KNOW EACH OTHER VERY WELL, I CAN TELL WHEN SHE'S TELLING A "WHITE LIE" AND VISA VERSA AND WE TALK ABOUT ALMOST EVERYTHING. SHE CALLED TWICE YESTERDAY, ONCE WHEN I WAS OUT WITH MY DOG AND THEN AGAIN LATER THAT NIGHT. SHE DIDN'T SOUND WORRIED, SICK, OR ANYTHING THAT WOULD MAKE ME CONCERNED TO FEEL I HAD TO CALL BACK RIGHT AWAY. I WAS IN A LOT OF PAIN DUE TO THE HEATWAVE HERE AND WASN'T IN THE MOOD TO TALK. SO ANYWAY, LOL, SHE CALLS THIS MORNING AND SAYS "WE ALMOST CALLED 911, WHY DIDN'T YOU CALL ME BACK YESTERDAY". I KNEW DANG WELL SHE WASN'T WORRIED BECAUSE WHEN SHE IS SHE WILL LEAVE A MESSAGE AND SAY "I'M WORRIED PLEASE PICK-UP OR CALL BACK". THE TRUTH IS SHE WAS USING MY HEALTH AS AN EXCUSE TO BE UPSET FOR ME NOT PICKING UP THE PHONE. THE DAY PRIOR SHE HAD A TOOTH REMOVED AND I GUESS IT GOT A INFECTION AND THAT'S WHAT SHE WANTED TO TALK ABOUT WHICH IS FINE BUT DON'T PUT YOUR STUFF ONTO ME. SHE EVEN ADMITTED SHE SAID SHE WENT TO THE "DOCTORS" INSTEAD OF GETTING HER TEETH CLEANED AT THE DENTIST IN HOPES THAT WOULD MAKE ME CALL HER. WELL I KNOW HER AND KNEW WHEN SHE SAID THE WORD "DOCTOR" SHE WAS PLAYING A LITTLE MIND GAME. I CAN TELL BY HER VOICE WHEN SHE'S NOT TELLING THE TRUTH & PLAYING SMALL GAMES LIKE THIS. I DON'T MIND THAT STUFF CAUSE KNOW ONE IS PERFECT BUT WHAT DOES BOTHER ME IS USING MY HEALTH & 911, TRYING TO MAKE ME FEEL BAD. DON'T GET ME WRONG, I KNOW MY FOLKS WORRY AND I CAN TELL BY THERE VOICE WHEN THEY ARE AND THEY HAVE EVERY REASON TO WORRY. I WISH I COULD TAKE SOME OF IT AWAY FROM THEM FOR IT HAS AFFECTED THERE LIFE, RETIREMENT AND HOW THEY SPEND IT. THAT'S ANOTHER STORY THOUGH, THEY ARE ALWAYS THERE FOR ME AND HELP ME WITH SO MUCH:) I'M BLESSED TO HAVE THEM FOR MY PARENTS AND MORE THEN THAT THEY ARE MY BEST FRIENDS. BY THE END OF THE DAY MY PAIN IS SO SEVERE WALKING TO THE BATHROOM, TO THE PHONE, TAKING MY DOG OUT BACK, ECT IS HELL ON ME. THE MOST PAINFUL PART OF MY BODY IS THE NERVE PAIN IN MY ANKLES/FEET. I HAVE ALSO IT IN BOTH HANDS AND SHOULDERS BUT THE FEET ARE THE WORSE PLACE. MY MEDICATIONS HELP JUST ENOUGH TO KEEP ME OUT OF A WHEEL CHAIR SO BY NIGHT TIME THE PAIN LEVEL IS 10 FOLD. I TALK TO MY MOM EVERY MORNING, MORNING TIME IS THE BEST SINCE MENTALLY I CAN LISTEN AND HAVE A BETTER CONVERSATION. BY THE EVENING SHE KNOWS I'M IN BAD SHAPE AND DON'T ANSWER THE PHONE...SHE KNOWS THAT, HECK EVERYONE KNOWS I DON'T ANSWER MY PHONE AT NIGHT. SO BACK TO MY ORIGINAL QUESTION IN THE TITLE OF THIS ENTRY...WHY CANT SHE/THEY GET IT? THEY "WORRY" BUT FORGET ME HAVING TO TAKE A FEW STEPS ARE PURE HELL, THAT 3-4 DAYS OUT OF 7 I HAVE A BAD MIGRAINE, MY EDEMA IN MY LEGS ARE SO BAD I CANT DO ANYTHING BUT KEEP THEM ELEVATED. THE LIST GOES ON AND ON MY WHOLE BODY IS AFFECTED...I'VE LEARNED TO LIVE WITH THIS, IT'S MY LIFE. SO WHY AFTER ALL THESE YEARS HASN'T SHE? IF SOMEONE CALLS AND SAY "PICK-UP, I'M WORRIED" THEN ACOURSE I PICK UP THE PHONE AND LET THEM KNOW I'M OK. I KNOW THIS SOUNDS PETTY AND I'LL PROBABLY POST IT AND DELETE IT TOMORROW. SHE DOES THIS SMALL STUFF AND IT BUGS ME, USUALLY I'M ABLE TO LET IT GO BUT I THINK BECAUSE SHE USED "ME & MY HEALTH" AS HER EXCUSE & IS WHY IT'S STUCK WITH ME TODAY. IF SHE WANTED TO TALK ABOUT "HER DAY" AND NEEDED ME THAT'S ALL SHE WOULD HAVE HAD TO SAY AND I WOULD HAVE ANSWERED THE PHONE. SHE ONLY DOES THIS HERE AND THERE, USING MY HEALTH AS AN "EXCUSE" WHEN IN FACT SHE JUST WANTS TO TALK. I KNOW SHE MISS'S ME AT TIMES, HECK I MISS THE OLD ME TOO. TO BE LIKE I WAS A FEW YEARS AGO WOULD BE GREAT AND BACK THEN I THOUGHT THINGS COULDN'T GET WORSE, I WAS WRONG. FOR ME TO STAY MENTALLY SANE ON A DAILY BASIS I CAN ONLY DO SO MUCH AND HAVE MY QUITE TIME. FOR PEOPLE WHO LIVE IN 24/7 PAIN WITH ONLY A FEW HOURS BREAK WHILE THEY SLEEP HERE AND THERE DURING THE NIGHT IT'S A HARD LIFE. SOMETIMES I BREAK DOWN IN TEARS LIKE 3 DAYS AGO BECAUSE A "EPISODE" OF NERVE PAIN IN MY HEAD, DOWN MY ARM AND INTO MY CHEST WAS SO BAD I WAS SCREAMING. I DON'T KNOW WHEN THESE THINGS HAPPEN IF I'M DYING OR WHAT AND TO STAY AS POSITIVE AS I AM TAKES A LOT. THE MORE I WRITE THE MORE I SEE WHAT'S REALLY BOTHERING ME ABOUT MY MOM. TO USE SOMETHING AS SERIOUS AS MY HEALTH AS A FRONT HURTS. A PERSON SHOULDN'T PLAY GAMES ABOUT THAT, IT'S LIKE THE BOY WHO CRIED WOLF. NOW I WON'T BELIEVE IT WHEN SHE CALLS SAYING SHE'S WORRIED EXPECT BY THE TONE OF HER VOICE. THAT HAS TO BE A SEPARATE AND A LINE THAT CANT BE CROSSED, IT'S LIFE AND DEATH FOR ME AT ANYTIME. WE HAVE A AGREEMENT FOR ME NOT TO GO 2 DAYS WITHOUT TALKING TO THEM, AFTER THAT TIME PERIOD THEY WONDER IF I'M LAYING THERE NEEDING HELP OR EVEN WORSE. THAT'S UNDERSTANDABLE AND SOMETHING WE ALL AGREE IS THE BEST & SAFEST THING. MY FOLKS LIVE CLOSE TO ME AND SEE WHAT I GO THROUGH PHYSICALLY AND GO TO MOST OF MY DR'S APPOINTMENTS SO THEY KNOW EVERYTHING. I DON'T TELL THEM MY DAILY STRUGGLES OR COMPLAIN ABOUT THE PAIN AND ONLY MENTION SOMETHING IF THEY ASK OR IF A NEW SYMPTOM HAS COME UP. I DON'T TELL THEM MY DAILY "PAINS" BECAUSE THEY WORRY ENOUGH AS IT IS, AND THEY ALREADY KNOW. THEY'VE SEEN DAYS WHERE I CANT WALK, MOVE, ARTERY PROBLEMS, DOUBLE VISION SO BAD CANT SEE, EVERYTHING. THEY KNOW IT ALL SO WHEN IT'S AN ON-GOING CONDITION THEY CANT HELP WITH I LIKE TO GIVE THEM A BREAK FROM WORRYING OR HAVING THERE MINDS FOCUSED ON ME ALL DAY. THEY HAVE A LIFE TOO WHICH I WANT THEM TO ENJOY AS MUCH AS THEY CAN. SO WHY IS HONESTY SO HARD AT TIMES FOR THE SMALLEST SITUATIONS LIKE THIS?? OR IS MY PAIN GETTING THE BEST TO ME TODAY, I'D LOVE TO HEAR BACK FROM SOMEONE IF I DON'T DELETE THIS TOMORROW:)