Sunday, October 4, 2009

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.

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