10/04/09 ENTRY

HI ALL, THINGS ARE MENTALLY BACK TO NORMAL. ONCE AGAIN TO MY READERS I'M SORRY ABOUT THE ALL CAPS BUT IT'S EASIER TO TYPE THIS WAY. I HAVE A FEW MORE TEST RESULTS TO SHARE AND WANT TO WRITE ABOUT HOW I'M DOING MENTALLY, EMOTIONALLY AND ABOUT MY BUSINESS. FIRST THE TEST RESULTS: I GOT MY BRAIN MRI BACK WHICH I NEW WOULD COME OUT OK, WHICH MOST OF IT DID. I WAS SURPRISED BY THE DIAG. OF A " PROGRESSION OF THE PATIENTS CHRONIC SINUS DISEASE". WHAT SINUS DISEASE???, I NEVER KNEW I HAD ONE, LOL BUT THAT EXPLAINS WHY MY NOSE IS ALWAYS DRY, LOL. IT ALSO SHOWED A "HYPERSENSITIVITY IN THE WHITE MATTER IN THE BRAIN", ONCE AGAIN WHAT IN HECK DOES THAT MEAN? THE EYE DR IN NEURO SAID NOTHING IS WRONG WITH THE NERVES IN MY EYES, WHICH IS GOOD AND I ALREADY KNEW. AT LEAST THAT'S ONE DOCTOR I WON'T HAVE TO SEE AGAIN OUT OF COUNTLESS THERE. TUESDAY I SEE THE UCSF EYE DOCTOR TO SEE IF ANY GLASS'S CAN HELP AND THE FOLLOWING WEEK IS THE CARDIO. HOPEFULLY I CAN START GETTING RID OF THE SPECIALTY DEPARTMENTS AND STAY IN JUST A FEW. SINCE THE PROBLEMS ARE WIDE SPREAD THAT MIGHT NOT BE POSSIBLE VERY SOON. ABOUT MY MENTAL & EMOTIONAL STATE. I'M DOING PRETTY GOOD, I EXCEPT THIS IS THE LIFE I'VE BEEN GIVEN AND KNOW IT'S FOR A REASON. INSTEAD OF FIGHTING IT & WISHING THIS OR THAT, I'D RATHER SPEND MY TIME JUST LIVING LIFE AS IT COMES. YES I HAVE LIMITATIONS BUT WHATEVER HAPPENS I'D RATHER BE SPENDING MY TIME WITH MY FRIENDS AND FAMILY. THAT'S WHY I'M GIVING MYSELF A YEAR AT UCSF FOR THEM TO FIND/HELP AND IF THEY CANT THEN I'M GOING TO STOP GOING. I'M NOT GIVING UP BUT I WOULD RATHER BE SPENDING WHATEVER TIME I HAVE LEFT DOING THINGS I WANT. LIFE ENDS TOO SHORT FOR EVERYONE, HECK I COULD BE HIT BY A CAR TOMORROW. I'M NOT SAYING I'M DYING SOON, I HAVE NO IDEA WHAT MY LIFE SPAN IS. THIS HAS BEEN A 24 YEAR JOURNEY AND THAT'S NOT COUNTING HEALTH ISSUE'S BEFORE THE CHRONIC ONES. COMING TO THIS CONCLUSION/DECISION HAS BEEN A RELIEF, I'M AT PEACE WITHIN AND THAT'S THE MOST IMPORTANT THING. BEING HAPPY IS SO IMPORTANT AND I'M HAPPY WITH WHO I AM, SPENDING TIME WITH OTHERS, LOVE MY BUSINESS AND WOULD LIKE TO FINALLY HAVE TIME TO DATE AGAIN. A LITTLE ABOUT MY BUSINESS, I LOVE DOING WHAT I DO. YEAH THERE ARE DAYS WHERE I'M SO TIRED OR IN PAIN IT'S HARD BUT I DO IT ANYWAY. THERE ARE OTHER DAYS WERE I GO NON STOP FILLING ORDERS AND FEEL GOOD. EITHER WAY WHEN I READ MY BUYERS HAPPY EMAILS IT PUTS A SMILE ON MY FACE, SEEING THEM SO PLEASED REMINDS ME WHY I KEEP DOING IT. ONCE AGAIN IT'S ABOUT BEING HAPPY IN LIFE AND SEEING THEM HAPPY MAKES ME HAPPY. MOST SELLERS ARE IN IT FOR THE MONEY BUT NOT ME, I DO THIS FOR MY MENTAL HEALTH, I ENJOY IT AND TAKE PRIDE IN GIVING PEOPLE A SAFE PLACE TO BUY AN AUTHENTIC PRODUCT AT A GOOD PRICE. I GIVE GREAT SERVICE, FAST SHIPPING, GREAT PRICES AND A GREAT AMOUNT OF PRODUCT, MORE THEN I ADVERTISE. I ALSO MAKE MY OWN LINE OF SHIMMERS AND LOVE CREATING NEW COLORS. I RECENTLY MAKE 3 MORE BUT I'M SO BAD AT TAKING PICTURES THAT I HAVEN'T LISTED THEM YET, ANYONE OUT THERE WITH TIPS ON HOW TO TAKE A GOOD PICTURE? PART OF ME WAS WORRIED ABOUT WRITING THIS BLOG AND LOSING BUYERS BUT KNOWING MY REGULAR BUYERS IT WON'T MAKE A DIFFERENCE. MOST PEOPLE KNOW THAT LUPUS, SECONDARY PROBLEMS FROM LUPUS, ARTHRITIS, CARPEL TUNNEL, MISC NERVE DAMAGE, ECT ISN'T CONTAGIOUS OTHERWISE MY WHOLE FAMILY WOULD BE SICK, LOL. COURSE IF I GET THE FLU OR A COLD I DON'T FILL ORDERS LIKE ALL SELLERS IN MY LINE OF BUSINESS SHOULDN'T. I HOPE IT WON'T HURT ANY FUTURE NEW BUYERS FROM PURCHASING FROM ME, I DON'T THINK IT WILL BUT IF IT DOES, WELL IT'S WORTH IT IF MY BLOG HELPS JUST ONE PERSON OUT THERE SUFFERING OR WHO CAN RELATE. ENOUGH FOR ONE DAY. I'M HOPING MY NEXT ENTRY WILL BE FILLING IN SOME OF THE HOLES OF THE YEARS BETWEEN WHEN IT STARTED TO TODAY. 10/8/09 I SAW THE 3RD EYE SPECIALIST AT UCSF AND LIKE THE FIRST ONE HE FOUND PLENTY WRONG. HE THOUGHT AS I DID IT'S THE MUSCLES IN MY EYES AND AS THE TEST WENT ON THAT'S WHAT HE CONCLUDED. ONE OF MY EYE'S DOESN'T STAY STILL OR IS NOT EN LINED WITH THE OTHER WHICH IS CAUSING HOPEFULLY MOST OF THE DOUBLE VISION. BOTH EYE'S HAVE STIGMATISMS, NOT JUST ONE LIKE THE LAST DR MENTIONED. IF I WAS SMART I'D LIST ALL THE EYE INFO TOGETHER FOR PEOPLE READING THIS BUT SINCE THIS IS A ON GOING STORY ABOUT MY LIFE I GUESS THIS IS OK. THE DR SAID MANY OF WHAT THE FIRST EYE DR SAID BUT THIS GUY IS MAINLY TO HELP WITH THE DOUBLE VISION AND GIVE ME GLASS'S IF THEY COULD HELP. HE DID GIVE ME GLASS'S, 2 PAIRS WHICH WILL HELP WITH THE DOUBLE VISION BUT NOT SO MUCH WITH MY UNKNOWN CAUSE OF POOR VISION. HE SAID "WHAT EVER I HAVE" IS WHATS CAUSING ALL OF THIS TO HAPPEN TO MY EYES. ONCE AGAIN, UNTIL WE CAN GET TO THE OVERALL BOTTOM OF MY DISEASE THERE IS NOTHING PEOPLE CAN DO EXCEPT GIVE ME "BAND AIDS". NOW I'M GRATEFUL FOR THE GLASS'S, I DON'T GET THEM FOR A WEEK OR SO AND AM PRAYING THEY WILL HELP:) WHEN IT COMES TO THE LIGHT SENSITIVITY WELL I'M STUCK ALONG WITH THE PROGRESSION OF THEY EYES GETTING WORSE. FOR NOW THOUGH I'M HAPPY WITH THE VISIT, HE WAS ALSO VERY HANDSOME, MY MOM ALMOST DIED, LOL AND HE WAS VERY NICE. THAT'S ONE THING ABOUT UCSF, OUT OF ALL OF THE DR'S, NURSES AND OFFICE STAFF I'VE ONLY HAD 1 DOCTOR THAT WAS RUDE AND 2 RUDE OFFICE GALS THE REST ARE THE NICEST AND MOST CARING/HELPFUL PEOPLE YOU'LL EVER MEET IN THE MEDICAL FIELD. THEY REALLY CARE FOR YOU WHICH HELPS ME CONTINUE DOING THESE LONG DRIVES AND VISITS. ANOTHER UPDATE, THE MEDICATION FOR MY LEAKING LIVER/PANCREAS DIDN'T HELP, ALL IT DID WAS GET ME SICK. SO FOR NOW THAT'S UP IN THE AIR UNTIL I SEE MY GI DOCTOR AGAIN.

10/01/09 ENTRY..UCSF UPDATE & TEST RESULTS

THIS IS WHAT I WROTE TO MY FAMILY SO I FIGURED I'D PASTE IT HERE. I WANT MY BLOG TO BE AS OPEN & HONEST AS POSSIBLE SO OTHERS KNOW THEY ARE NOT ALONE... HI ALL, HERE IS A UPDATE FROM THE LAST HANDFUL OF TEST, RESULTS & UCSF VISITS. I FIGURED I'D WAIT TILL I HAVE A FEW INSTEAD OF SENDING OUT A EMAIL AFTER EACH VISIT. THIS LAST VISIT AT THE EYE DEPT GOT ME PRETTY DOWN WHICH IS WHY IT'S TAKEN A FEW DAYS TO WRITE. I'M STILL UPSET/WORRIED BUT SNAPPING . THAT ALONG WITH MY EYES WORSENING MAKES IT HARDER AND MORE PAINFUL TO SPEND A LOT OF TIME ON THE COMPUTER WHICH IS WHY I'M SENDING THIS OUT IN A GROUP EMAIL. START WITH THEY EYE VISIT, THE DR WAS GREAT AND DID MANY TEST. HE MAINLY DEALS WITH MEDICATIONS DAMAGING THE EYES AND SINCE I'M ON "PLAQUINEL" THEY WANTED TO RULE THAT OUT FIRST. HE FOUND IT WASN'T CAUSING ANY DAMAGE BUT FOUND MANY OTHER THINGS. HE SAID WHEN HE POINTED OUT THE EYE CHART THAT HE COULD SAY SOMETHING ABOUT EVERY PART OF THE EYES WHEN IT CAME TO ME AND MY RESULTS. HE TOLD MOM AND I 4-5 THINGS, LEFT THE ROOM SO WE COULD THINK AND PROCESS IT AND WHEN CAME BACK INSTEAD OF CONTINUING HE ANSWERED THE QUESTIONS WE HAD. I THINK HE COULD TELL I HAD HEARD ALL I COULD AT THAT MOMENT AND STOPPED WITH SHOWING/EXPLAINING THE REST WHICH WAS OK WITH ME. HE IS SENDING ME TO 2 OTHER EYE SPECIALIST FOR THEM TO DO WHAT THEY CAN IN THERE AREA OF SPECIALTY OF THE EYE. THIS IS WHAT HE FOUND THAT WE KNOW SO FAR: BOTH EYES HAVE CATARACTS AND IN THE BEGINNING STAGES OF IT. WHEN THEY GET WORSE I CANT HAVE SURGERY, MY BODY MAKES TO MUCH SCAR TISSUE. MY 3 LAYERS AROUND MY EYES ARE NOT UNIFORM & DO NOT MAKE FLUID NOR TEARS. THE MAIN BACK PART OF THE EYES ARE INFLAMED WHICH THE PREDISONE IS HELPING KEEP DOWN HE SAID. I HAVE VACULES & CLIEFS WHAT EVER THOSE ARE. THE ONLY THING HE SAID THAT WASN'T WRONG WITH THEM WAS THE OPTIC NERVE, THAT'S FINE. FOR A WEEK I HAVE TO PUT DROPS IN MY EYES EVERY HOUR, CLOSE THEM FOR 5 MINUTES WITH A COLD ICY RAG OVER THEM IN HOPES IT WILL PUT BACK IN BALANCE THE 3 LAYERS. ONE OF THE SPECIALIST HE SENT ME TO MAIN THING IS DOUBLE VISION SO I'LL BE SEEING HIM FOR THAT. THEN THE OTHER WILL SEE IF GLASS'S CAN BE MADE TO HELP ANY OF THE PROBLEMS. A YEAR AGO THE TEST ALSO SHOWED MY VISION BOTH CLOSE AND DISTANCE ALONG WITH PHERIAL WAS WORSENING ALONG WITH "BLIND SPOTS" ONCE AGAIN I'M LEFT WITHOUT A CURE SINCE THE CAUSE IS MY UNSPECIFIED AUTO IMMUNE/MUSCLESKELTON" DISEASE. UNTIL THEY FIND THAT WE CANT STOP ANY OF THIS. MOM AND I WENT DOWN TO THE RHEUM DEPT AFTER THE EYE VISIT TO FIND OUT WHAT THE HOLD UP WAS AND WAS TOLD MY DR'S REQUEST FOR ME TO BE SEEN THERE WAS DENIED! YEAH, IT WASN'T A GOOD DAY. I HAVE TO CALL MY PRIMARY THERE AND HE NEEDS TO WRITE RHEUM A LETTER SINCE I HAVE 6 UCSF DR'S WAITING/REQUESTING I BEEN SEEN IN RHEUM. THE REQUEST WAS ORIGINALLY WRITTEN BY THE 1ST DR I SAW AT UCSF, NOT THE PRIMARY I HAVE NOW THAT KNOWS ME AND MY CASE MUCH BETTER. I HAVEN'T CALLED YET CAUSE I NEEDED A BREAK...I WAS DOING SO GOOD MENTALLY WITH THIS EXHAUSTING BUT HOPEFUL UCSF SCHEDULE BUT WHEN THAT HAPPENED AND THE EYE RESULTS I BROKE. NOW FOR THE ESOPHAGEAL MANOMETRY & IMPENDANCE RESULTS. THIS IS WHERE THE TUBE WAS STUCK DOWN MY NOSE TO STOMACH FOR 1/2 HOUR AND MADE ME SWALLOW & THE ANOTHER DOWN FOR 24 HOURS HOOKED TO A SMALL DEVICE. ACTUALLY IT CAME OUT 3 HOURS EARLY DUE TO I GOT A FEVER AND THEY HAD TO REMOVE IT. I WAS TOLD THE LUPUS ATTACKED IT AS A FOREIGN OBJECT. THEY GOT ENOUGH RECORDING TIME IN THOUGH FOR THE RESULTS. HERE THEY ARE; 1/2 HOUR TEST SHOWED "MANOMETRY INDICATES A NON-SPECIFIC ESOPHAGEAL MOTOR DISORDER". ONCE AGAIN, THEY DON'T KNOW THE CAUSE SO NO CURE. BUT IT DIDN'T SHOW ACID SO IT RULED OUT CHEST PAINS CAUSED BY REFLUX (2ND TEST DONE THAT HAS RULED THAT OUT). 24 HOUR TEST RESULTS; "ABNORMAL NON ACID REFLUX" THIS IS BILE/SECRETIONS THAT IS LEAKING FROM MY LIVER/PANCREAS, IT'S NOT PROCESSING LIKE IT SUPPOSE TO. I'LL LEARN MORE WHEN I SEE MY GI DR NEXT WEEK. IT ALSO SHOWED "INCREASED TRANSIET LES RELAXATIONS" WHAT EVER THAT IS. I'M NOW ON ANOTHER MEDICATION 3 TIMES A DAY FOR 2 WEEKS TO SEE IF IT HELPS. IT'S A VERY DANGEROUS MEDICATION SO I CANT BE ON IT LONG. SO INSTEAD OF RULING THINGS OUT WE ARE FINDING MORE. THE GOOD THING IS THE MORE THAT'S WRONG THE EASIER IT WILL BE FOR UCSF TO FIGURE OUT WHAT'S AUTO-IMMUNE/BLOOD DISORDER IS CAUSING ALL OF THIS. THE BAD THING IS, WELL, LOL I DON'T HAVE TO SAY. LIFE HASN'T BEEN FUN NOR GETTING BETTER PHYSICALLY FOR SOMETIME NOW. I CANT THINK OF ANY PART OF MY BODY NOT AFFECTED OR NOT IN 24/7 PAIN BUT AFTER A FEW MORE DAYS OF BEING SAD, MAD, SCARED, ECT I'LL GET BACK UP, WIPE THE DIRT OFF MY ASS AND BE STRONG AGAIN FOR THIS IS HOW GOD MADE ME, STRONG.(EXCUSE THE SWEARING) AFTER SEEING HOW LONG THIS TURNED OUT MAYBE I SHOULD WRITE AFTER EACH VISIT, LOL. I GUESS THIS ISN'T BAD CONSIDERING HOW MANY TEST & VISITS IT COVERED. MY NEXT ONE WILL BE AFTER I SEE THE CARDIO, 2 GASTRO DR'S, BRAIN MRI RESULTS & MAYBE 1 EYE SPECIALIST. I LOVE YOU ALL & PLEASE KEEP YOUR PRAYERS COMING I ALSO PRAY ALL IS GOING WELL FOR ALL OF YOU:))) CHERYL WE ALL NEED HELP, I GAVE TO JERRY'S FUND LAST WEEK, THERE ARE SO MANY PEOPLE/DISEASES OUT THERE AND VERY LITTLE MEDICAL RESEARCH. LITTLE CHILDREN...I THINK OF THEM AND AM REMINDED I AM BLESSED.