Saturday, December 12, 2009
First of all I want to say sorry for not posting anything for awhile, I don't even know where I left off. The good news is I'm getting a mini laptop which will enable me to do my blog on a regular hopefully daily basis. See my computer is a desktop and in the coldest room of my place with no music, TV or a place for my dog to lay. By the time I'm done with my orders, quotes, advertising.. ect I don't have time to answer even my personal emails. The only way I would have time is if I spent all day and evening in my computer room. So for x-mas I'm getting my netbook which will allow me to relax on the couch and write as much as I want, and write hopefully daily when I'm in the "moment" not trying to play catch up. I want me readers to see me on my good and bad days mentally along with physical. Yes, I stay pretty positive but I am human and do have those days that I want to share here, the days I'm in tears because the pain and fatigue is so bad. I can handle the pain but when I get hit with both is when I'm the most vulnerable, depressed and well, it's pure hell. I'm looking forward to turning this into a real blog, just not a diary about my UCSF tests and appointments. Talking about UCSF, lol I had those heart test a few weeks back and those through me into a huge flare-up. Anything that gets done to this body now has a bad reaction and makes me worse no matter how small or big. No matter what they do things keep on going wrong and no one there knows why yet. I don't get the results back till Feb, my doctor is gone till mid January and he's only there once a week. After that hopefully I'll pretty much done with cardio, vision, GI and hopefully can concentrate next year on rheumatology for that's where the answers lay. Oh, the new glass's did help with my double visions but only in one lense so I got back in a few weeks to get the other corrected. There is nothing they can do to stop the progression of the eyes but the glass's will give me more freedom back and actually they have seem to stop getting worse so that's a good thing. They did put me on Lipator and will high blood pressure medication since for some reason those 2 are now through the roof. I'm telling ya, it's effecting everything. Before it was mainly the joints and nerve pain, now it's the top of my head down to my toes. Something scary did happen the other night that I haven't shared with anyone, I threw up blood. It wasn't a lot, otherwise I would have gone to the ER but enough to concern me since my pancreas isn't working properly. Time to end this but I am so looking forward to starting the New Year and creating the blog I originally wanted. Happy Holidays to you all and I will most likely see you in 2010:)
Tuesday, November 17, 2009
It's been awhile since I've made any health updates so here it is:) I don't know where I left off so I might miss some conditions. I saw the eye specialist to see if glass's can help and he too found many things wrong with the eyes. Things the other 2 eye doctors didn't find, along with the problems I already mentioned my eye's are like pigeon toes. They don't always stay centered which is causing the double vision. Then I have more stigmatism then originally thought which is also causing the double vision. The main cause is muscle related, once again the same thing that's causing most of everything else. Well, UCSF still can't find the underlining cause of all these new disorders. The auto-immune is Lupus but the muscle disorder they still cant pinpoint and in the meantime they keep giving me band-aids to help and slow down the progression or damage. The special glass's they made did help but only on one side so I have to go back so they can adjust them and believe me they weren't cheap. Last week I had 2 long and hard heart tests along with a 48 hour heart monitor I had to wear. My follow-up appointment got pushed back till Feb so I wont find out till then the results, yes Feb 2010. That's one thing about UCSF, it takes a long time to get an appointment due to each doctor is only there 1 day a week. One of the test they injected something to speed up my heart while doing an ultrasound and yep, I got chest pains which isn't a good sign. During the test though it seemed they couldn't see what was causing the pain. I have a feeling it's going to be my heart muscles, my gut has been right with everything else. That and my last 2 EC G'S showed problems with the muscles but not severe enough to be conclusive on what was the cause. My mouth isn't getting any better, if anything it's getting worse. It's so dry any sugar or acid is attacking my teeth and causing cavities for the first time in my life. Now I'm on 2 special toothpastes and 3 mouthwash's none that help the dryness but will provide my teeth fluoride, etc. My neck is not in a 24/7 flare-up, the glands are sore everyday which needs to be checked out soon. The glands isn't a muscle problem so I really need to start following up on that. It's hard keeping up with everything since so much is going on at once and so many doctors are involved. The times when I have a week off from going to UCSF are the best, I love the breaks. They are very draining on both me and my folks who drive me to each visit. Thank god for them....they are my support system and will do anything they can. I have to say though I've never been to a hospital or Dr's that had as nice as people as UCSF's. Every department, nurse, student in training and doctor have been very nice and supportive, down to the x-ray tech and helpers. I think that's why I'm doing so good mentally, I finally have the support from a huge team of doctors. Someone asked me if they are giving me "hope" and that's why I'm doing good mentally & I said no but they give me "support" and "they care". All of them say they wont give up till they find out whats wrong but I know they might not or when they do I'm still going to be stuck with the body I have. I'm at peace with that now and that's a wonderful gift. Yes i wish it could have stopped with the nerve & joint damage and not go into the rest of the body but life is too short for what ifs. I Look forward to meeting someone someday when I have time, lol and living life to the fullest that I can. I've been to children's hospital and seen much worse, little kids dying or struggling with cancer. That's a picture I'll never forget nor get out of my head nor do I want to. It's a reminder that things could be worse and I'd live like this if it meant saving just one of them.
Sunday, November 1, 2009
WHEN IT ALL STARTED, PAST INFO...Here is some info about my past. Besides being born with my bad knees and having many surgery's on them and my thyroid by 18 I was also told when I was 20 I had some kind of auto Immune disorder. Way back then a specialist saw it but told me it would take years for it to manifest enough for it to be diagnosed. So I continued on with my life, I was a workaholic, worked out at the gym as much as I could (got pretty buffed), in and out of relations, met my 1 true love but had to say goodbye, basically lived life. I was very attractive and turned heads where ever I went, was good with money and was a very strong independent woman.I got sober at a young age, 24 but had started drinking when I was 12. I had known for a few years before getting sober that I had a problem but the bottle had it's hold over me plus it helped with my 24/7 pain. The day came when even after getting a DUI I was drinking and driving again, it was then a friend asked if I was ready to get help. That was May 7th 1989 & the last time I had a drink. I've been blessed that through out these hardest years of my life that I've had no desire to drink or mis-use any medications my doctors have or have tried me on.Stopping drinking was the easy part, the first few years of being sober is the hardest, you have to find out who you are inside. Many go through phases and finding other "things" to fix us but eventually you will be left with yourself. I purposely spent many years single finding out who I was and it happened around the same time I got carpel Tunnel in both hands. So not only was I working on "me" I couldnt go to work either for the next year I had 5 failed surgery's on my hands. No work, no gym just me.....and it was the best thing that could have happened. I went nto a deep depression, got help and spent time with a therapist that helped me dig through the layers of protection I kept around myself my whole life.I also had to learn it was O.K. to take pain medication while being sober. My first few years I wouldnt touch it and a friend who had 20 years sober told me I needed to work on it and listenn to the doctors. a few years later I couldnt handle the physical pain anymore and god bless to this day I havent had problems with pain medications and abusing them. If anything I dont take the amount I'm allowed. Very few people can do this, can take meds and not start drinking and using again. Mine goes right to the pain, I dont feel a "mental" high and only take enough to keep the edge off.After the CTS surgery's the nerve damage in my hands slowly progressed to my elbows and shoulders and had 2-3 failed surgerys on my shoulder. so as you can see, it keeps progessing and getting worse no matter what part of my body. Around a few years aftyer my hands I was walking and bang my right ankle started killing me. I figured I sprained it but after a month it didnt go away. Two months later the same thing happened to the left and after going to the doctors I found out both ankles had nerve damage. The doctors at this time thought maybe I had fibromyalgia but one doctor didnt beleive so nor did I anymore. FM doesnt cause the nerve damage my body was creating. More coming soon, still need to spell check, sorry:)
Sunday, October 4, 2009
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.
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.
Monday, August 17, 2009
Well this last few days have been hard ones, my breathing, chest pains and weakness have been severe. As long as I stay still it calms down, I'm hoping in a few days it will pass. I went to UCSF on Thursday and they took 9 vials of blood, lol, they don't mess around. I now have 3 more appointments scheduled and waiting to hear back regarding the other specialist I've been sent to. This week I go in for a Esophageal Manometry/Impendence which is a camera is put through my nose to/around my upper GI to see how my muscles are working. It's stays in for 24 hours so the next day another trip to the city to have it removed. It takes 1-2 hours for it to be put in, which I am awake for. They already ruled out any kind of acid or any problems in that nature being the cause of these chest pains. This will tell us how my muscles in that whole area are working. Then the following Monday is my brain MRI (was requested from a doctor outside of UCSF ) so this next week will be another busy one. I'm very happy with all of the UCSF doctors & teams I've met and know in my gut they will find the answers, that's the first time in 20 plus years I've felt that. Even though my body is totally exhausted and my brain in a fog my spirit is happy & relieved. Yes, I'm scared with these new chest pains, dizziness, breathing, ect...but know if I just hold on they will find the cause. The bad news is the Cardio dept is busy till Oct and they cant see me till then. If anyone is reading this at first I write as if it's a journal and then come back and clean it up. My goal is still to go back to the beginning to whats going on today. Until then, I've basically been getting slowly sick since I was around 20-25 years. I was born with bad knee caps and lived with pain with that from the 5th grade and on, so I've been in 24/7 pain my whole life with some part of my body. In my 20's it was small signs but I didn't let it get in the way.
Wednesday, August 5, 2009
My 24 year journey of living with Lupus, other disorders & 24/7 pain . I wanted to create this blog to share with others who are disabled, healthy, family member of a disabled, ect what life is like for me. I've been ill for around 24 years, the past 5 very bad and the last 1-2 years have gone through things I never thought I would. I have a "Lupus" like auto-immune disorder, the doctors cant determine yet exactly which one so it's classified as a "Undefined Autoimmune/muscle skelton" & "Mixed Connective Tissue" disease/disorder. Thats only 2 of the many health problems but it's the underlining trigger to most of them. My blog will share about pain medication, good pain managment, new disorders I have, my good & bad days, outlook on life, how I run my business, being sober for 20 years and how I've choosen to fight and not give up. I've always wanted to create something like this and after Michael Jacksons death it pushed me to start it. Many people have no idea what affects certain health conditions can have on the body. What a good pain doctor can do for you and should do and how the medications work. I'm hoping to make this a weekly entry once I get it up to date to where my life is today. I'll make a short summary of the last 25 years and what my life was like before the pain/disorder took over. Facts about how 40% of lupus patients test false negative, 60% of Lymes disease test false negative & the diffuculties of struggling to find the right doctors to help. In the meantime I'm also going to try and make this into my own website, a place everyone can read it if they like. Entry for July 24, 2009 Good news, yesterday I went to UC in SF to one of their departments to see why my mouth reacted the way it did to a lip biopsy. During the visit they asked many questions and since it's a well known teaching hospital they are really on top of things. My intentions was to keep the visit focused on my mouth since in past experiences if I brought up all my problems it would "overload" the doctors. Well, not here:) They did all the asking and questions I never expected from this visit. When the teaching doctor came in after his "team" had collected the info he also brought more people in. He then asked questions about my old job and detailed questions concerning the enviroment of it. Since my old job was around a lot of ground metals & toxic liquids he wanted to know everything. He tehn asked about my current doctors, what they are or are not doing, ect.He then looked at my mouth and gave me the medication needed, ect. Then came the unexpected, he said YOU NEED TO BE SEEN HERE, YOU NEED TO BE HERE. GO REGISTER AT UC AS A PATIENT NOW. WE NEED TO FIND OUT WHAT IS CAUSING ALL OF THIS AND THIS IS THE PLACE FOR YOU TO FIND OUT, WE CAN HELP YOU. I cannot tell you how many years I've been waiting to hear those words, how many old doctors told me only a place like UC could help me but I never had a way in, until now. Due to recent chest pains he was concernedI havent been sent to a heart dr yet and didnt like my current Rhruem doctors treatment. I will be seeing all types of specialist there and many "teams" looking over my case. Since this is skipping from my last posting to yesterday I know some of this wont make sence since I havent written "my story" as planned. Yet I'm so happy I had to share this:)My goal is to get as current with my story as fast as I can and let you know where my body/health is today. I'ts not good nor easy but mentally I'm very strong and good natured person and that's the parts I want to share. I run a small business which on some days is so very hard but I keep going. Hopefully soon this will be done so each entry is current.