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:)

OCT 2010 Life choices & changes.....

HI ALL, I WANT TO THANK THE PEOPLE THAT HAVE BEEN SENDING ME EMAILS AFTER READING MY BLOG, YOU ALL HELP ME SO MUCH AND THANKS SO VERY MUCH FOR WRITING:) THESE PAST FEW MONTHS HAVENT BEEN EASY, MY HEALTH GOT WORSE. BETWEEN THE LUPUS & OTHER DISORDERS I ALREADY HAD MY NEW PROBLEMS WITH THE CORONARY ARTERY SPASMS, BLOOD PRESSURE DROPS AND VASCULITIS GOT SO BAD I WAS PUT IN A POSTION TO MAKE SOME HARD CHOICES. EITHER I COULD KEEP DOING WHAT I WAS DOING WITH MY BUSINESS, ECT AND END UP IN THE HOSPITAL AGAIN OR CLOSE DOWN MY MAC BUSINESS. I ACTAULLY WENT THROUGH THE 5 STAGES OF GRIEF, I BARGINED AND TRIED CUTTING DOWN THE HOURS I WORKED, I GOT ANGRY AND SAID "IT'S NOT FAIR", I DIDNT BELEIVE IT AND TRIED WORKING MY NORMAL HOURS AGAIN AND FINALLY GOT SAD AND STARTED SELLING OFF MY STOCK. NOW I'M AT ACCEPTANCE AND AM LOOKING FORWARD TO WHEN IT'S ALL DONE, I HAVE PLENTY OF STOCK TO SELL SO IT WILL TAKE AWHILE. I'LL BE KEEPING MY LINE I CREATE OPEN SINCE IT'S LESS DEMANDING & LESS STRESSFUL....IT'S ACTUALLY RELAXING CREATING THE COLORS. AT FIRST THE THOUGHT OF NOT BEING THERE FOR MY BUYERS WAS SO UPSETTING...GIVING PEOPLE A SAFE PLACE TO BUY THE REAL THING AND BE TREATED AS A HUMAN AND NOT A NUMBER IS WHY I LOVED DOING WHAT I DO. AFTER GOING THROUGH THE STAGES I REALIZED A NEW CHAPTER OF MY LIFE IS ABOUT TO START AND IF I DIDNT CLOSE MY "MAC' PART I WOULDNT LIVE LONG TO SEE IT. SPENDING TIME WITH MY FAMILY & FRIENDS IS WHATS IMPORTANT AND I'M ALWAYS TOO TIRED AND IN PAIN TO DO ONCE I'M DONE FILLING MY ORDERS. YES, THE BUSINESS MADE ME HAPPY BUT NOW WITH MY HEALTH WHERE IT IS THERE ARE PEOPLE IN MY LIFE THAT I LOVE DEARLY AND IT'S TIME I SPEND MY LIFE WITH THEM. WHEN A DOCTOR SAYS YOUR LIFE SPAN WILL BE SHORT AND YOUR ONLY 45 IT CHANGES YOU AND THINGS THAT YOU NEVER WORRIED ABOUT OR THOUGHT ABOUT BEFORE COME CRASHING DOWN INSIDE YOUR THOUGHTS. AT THE MOMENT I'M SELLING MY MAC FULL JARS FIRST SINCE SELLING OFF MY STOCK IN SAMPLES IS TOO MUCH WORKING AND WOULD TAKE FOREVER. I ACTUALLY TRIED IT AND GOT SO BUSY AGAIN THAT I ENDED BACK UP IN THE HOSPITAL. LIFE THROWS EVERYONE CURVES, HECK LAST NIGHT SOMEONE TRIED BREAKING IN, I HAD TO CALL THE POLICE...IT WAS AWFUL. I COULD BE DEAD RIGHT NOW, THANKFULLY MY DOG HAS A HUGE BARK. LAST WEEK MY DAD FELL OFF A MAKE SHIFT LADDER ONTO ME, I WANTED TO BREAK HIS FALL CAUSE HIS HEAD AND SPINE WERE GOING TO HIT A HARD WOOD TABLE.I POSTIONED MYSELF SO HE WOULDNT GET HURT IN A WAY THAT WOULD HURT ME THE LEAST ALSO. STUFF HAPPENS TO EVERYONE, DISABLED, ILL OR NOT .... IT'S HOW WE HANDLE THOSE CURVES THAT MAKES US WHO WE REALLY ARE. SOMEONE RECENTLY ASKED ME "WHAT HAS BEEN YOUR HARDEST LIFE LESSON" AND MY ANSWER WAS "BEING ABLE TO LOOK IN THE MIRROR AND REALLY LOVE AND KNOW WHO I AM ON THE INSIDE AND OUT". I CAN DO THAT BUT IT TOOK A LOT OF WORK IN MY YOUNGER YEARS TO GET TO THAT PLACE. LOVING AND LIKING WHO WE ARE TO ME IS THE KEY TO SURVIVING IN LIFE FOR AS MANY OF US KNOW THE WORLD WE LIVE IN ISNT ALWAYS A EASY PLACE.

June 28th...life update

I've been wanting to come here and write for quite awhile now, this feels so good! Good news the tumor on my thyroid isn't cancer, yay! Bad news is my coronary heart spams are worse as is my overall pain & health. I'm all done with UCSF, it was taking too much out of me. Doing weekly trips and each test would make my body worse so I decided to stop and take a break. My pain doctor is trying to control my pain level better and once that's done then it's time for me to start seeing my friends and family more. I met this gal recently who is in the same boat as I, has multiple serious health problems and on basically the same medications as I. She's a little younger then I and out of the blue her organs shut down and her doctors said she wasn't going to make it. She hung on for weeks with all her organs shutting down, drifting in and out and eventually came out of it and now she's OK.The Dr's said it was a miracle, she should have been dead. Like me she was going in for regular blood tests to make sure her liver & kidneys where OK but this still happened. This really made me stop and think, I always thought I wasn't afraid of dying but have realized I am. The thought of leaving my family and not knowing "what happens next" scares the heck out of me which isn't like me at all. I'm a very spiritual person and this is the first time I've had this fear. Maybe because life is going by so fast and 10 or 20 years can come and go in a flash. It's so different when we where young, time went by so much slower. If anyone in their teens or 20's is reading this, your parents are not lying when they say life goes by faster the older you get.It starts in your late 20's but in your 40's it goes by faster then you thought possible and I think that's why I now have this fear. I see how short life is and mine will be shorter due to my health and don't want to spend it just going to doctors and filling my business orders. I love my business, don't get me wrong but there is more to life then filling orders 7 days a week and seeing doctors. I need to make some changes besides not going to the Dr's anymore. My business wears me out so my pain level is higher and have zero energy so I have to find a balance. If any of my buyers are reading this don't worry :) I just need to find a balance and to spend time with the people in my life that are important to me for no one knows when there number is up. I'm at a turning point in my life, maybe my mid life crisis, lol. All I know is something has to change for me to be able to enjoy the life I've been handed better then I have been. What was ok before no longer makes me happy and complete......

Cardio results 2/22/2010 visit

Well folks, I thought the tests I had last November showed I had nothing wrong. What they did end up showing is I have a condition called "Coronary Artery Spasms". There is no cure but is treatment. Since m,y chest pains have calmed down I have to take nitro when it happens. If they start becoming a daily problem then I'll be put on another medication. The heart itself is fine, it's just the artery & muscle to it. He also "officially" diagnosed the high blood pressure and started me on medication for that and my cholesterol medication has brought my levels back to normal which is great. Why this is all happening at once we still don't know. The good news is the heart condition could be much worse and it will be a pleasure seeing my new primary be put back in his place:) Also the glass's are helping so I will be getting bifocals so I can drive again as soon as I can afford it. The biopsy on my thyroid mass is set for the end of March. Enough about the medical stuff:) Business is going real good and my own line of mineral eyeshadow is really picking up along with the sales of my main product. I love and respect the other brand I sell so hopefully I'll always be able to offer that to my buyers. Recently 2 gals made videos on youtube about my line, I cant tell you how good it felt. They did a great job, heck it could have been a commercial it was so good. Knowing people are that happy with my stuff makes all my hard work worth it. I'm blessed that I love what I do so many people don't. I don't make a lot doing it basically enough to cover my cost and supplies. It's more like a full time hobby which enables me to take part in the work world. How am I mentally????Besides having low energy I'm doing pretty good, much better then last time I wrote. I've been trying to make more time to see friends and it's been good for me. I want more of a life then UCSF and my business, yes I love my business my there is more to life:) My resolution is to start spending times with my friends and once UCSF is done get out there and meet new people and maybe try dating:) First time in 4-5 years, lol, yes it's been that long...not even a kiss! That's a good subject, relationships...how to have one with chronic pain & illness's. It's very hard which is why I've been single so long. I've never had anyone end it because of my health, if anything it's harder on m,e then them. No one has minded my health problems or limitations but I do cause I know I cant give them what they deserve. There is only so much of myself I can give, only so much energy left each day and only so many activities I can do without having to "pay for it" the next day. I've stayed single for I do feel I have enough to give, I have plenty of love but we all know love isn't always enough. Plus after being single so long I cant picture myself being in a 24/7 relationship but I could be wrong, people do change, even me:) When the times comes when I am ready to date I will most likely try and date people who live like I do, who understands and we can help each other. The saying about living in another shoes is very true, we don't know what others go through unless we have been there ourselves.

Ultrasound report...

This week I got my ultrasound report and once again I have a document to back up an ailment. The report showed my mass has doubled this past year and the smaller mass is still there. It said it couldnt remark about the salvatory glands due to an MRI is needed to get good pictures/views of those. The reason for that is many of the salvatory glands are around & behind your jar line so the ultrasound cannot pick up the glands. We have hundreds of little glands and it did show that some in the front are inlarged/inflammed.

I'll be going in for a biopsy and depending on the results will determine the next step. The thing is though the thyroid gland & mass isnt causing my dry mouth and swelling of other glands and thise are the things that physically bother me the most.

The therpistt called again and he's rather confused....if i have records stating my many diagnosis why is the doctor sending me there. I told him I offered to mail a set to him but the dr refused them and said "if I need your help I'll ask". He mentioned if these results show I have a mass then basically I will be going to that session to pasify the doctor for it is clear my health is poor and these physical issues/diagnosis do exsist. I found out I have to pay 55.00 for this session....so I'm waking up at 4:30 in the morning, spending 4 hours at UCSF for a problem I dont have and have to pay for it, this really ticks me off. If I didnt have to pay for it and it was later in the day I'd be happy to go and show the docotr it's all in his head, not mine. Thats not the case though, I'm broke and am saving for bfocals so hopefully I can drive soon again, I dont fall asleep till midnight to one so waking up at 4:30 is very hard for me and my folks who have to drive me.

I see the doctor (who started all of this) on the 2nd and I'm going to tell him exactly how I feel and bring him copies of my old records showing everything.

I've written a lot about UCSF and latley it hasnt been good things. I must say 99% of the doctors and staff are the nicest and most caring people you will meet. My eye dr's stuck by me when they had no idea what was causing my double vision and because they beleived in me they eventually found the cause. People with chronic illness's and pain need doctors that supoort them emotionaly and physically. I know there are issues I'm stuck living with, I'll always have lupus, they will never find the "gene" causing havic in my body orl conditions like the pherial neuropathy.  On the other hand they should be trying harder to atleast stop the progression and try like the eye doctors did.

For people out there dont ever give up or give all your power to a dr your not hapoy with. Keep on searching until you found the "one" that will help you.  My Primary doctor outside of UCSF  is great and after another 9 months I'm going back to him and the dr's he wants me to see, I'm waiting the 9 months to give UCSF more time & to get into their rhuem department which is one of the best in the U.S.

For me because I've been dealing with pain my whole life I'm looking forward to not going to the doctors anymore wether or not they have helped me or not. I'm giving it another year and then I'm stopping. It gets to the point where it's causing more stress then what it's worth. My body has too much damage done and it cant be fixed, whats done is done. Yes, they might be able to stop further things from happening but thats only if they find the root cause and as my good primary has said I'm at the point where they need to concentrate on keeping me comfortable. I love my business and want to spend more time expanding that and living life to the degree I can so after this year is up thast what I'm going to do.

I'm happier when I dont have the stress of going here and there and to be honest I really dont think there is anything they can do, my bidy is too far gone....this is the life I was given. I accept that and want to soend the rest of it doing things that make me happy.  Seeing my buyers happy brings me a lot of joy. I am at peace within except when things like the recent bs at UCSF happens. Who needs that?? People that live like I do sure dont. For those who read this I'm sorry if I repeat my thoughts, feelings or information. I don't re-read each entry before making another. Between that and my memory, well, I often will repeat myself. This is it for todays entry...try and be happy, take control over your life and live it the way you want and accept the things we cannot change. Just in this past month another problem popped up with my thumbs, now along with my CTS I have arthritis in both thumb joints that is causing a lot of pain. I have no control over it but I do have control on how I handle it. I choose to accept it and stay away from self pity and thinking "not another thing" or "why me". Yes, I do have days when I feel like that but it might be an hour here and there. Once I write about it or share my feelings with someone else then it's gone. We all need to vent, just try not to sit in it too long.

A crazy doctor...what can a person do

I had this awful visit with a doc I've seen only twice at UCSF, the 1st time he was great & the 2nd acted like we never met. Because my diagnosis have been outside of there (besides my eyes, gland mass's) he wants me tested to see if it's all in my head. I told him I could mail him copies of my diagnosis and test results from my other doctors and he said "if I need your help I will ask". Well fine then!!! I was sent to UCSF and they are the one's telling me who to see and so far have been sending me to department to rule out conditions. The shrink called and believes me since I have physical proof from my scars from surgery's and copies from my Doctor and past test results. Even still I have to play this game to pacify this doctor who is leaving by the way in June. Now since it's in my file I have to go to prove him wrong which means waking up at 5:00 am in the morning to be there by 8:00 oh and it's a 3 hour process.

Wow, that was a lot of venting, lol. I almost said sorry but this is what my blog is about, my life, my real life. I wish my family would accept my health and stop hoping and wishing for a cure. All I want is to spend my life doing things I want and only go to the dr as needed as things come up. I really feel they wont find the cause until it's too late. That's how many chronically ill people live.

Many of my followers are MAC pigment buyers and many have been asking if I'm going to stay in business since MAC changed the jars. YES:) I have plenty of stock with the old jars and when I have to start buying the new jars stock then I'll be raising my price's around .25 per sample. This wont be for around a year so for now I don't have to worry about it.

People ask me how I cope....well my dog helps, my business and acceptance. Is it fair, no but breat cancer and all other diseases are not fair. Spending 95% of my life in pain isn't a way for a person to live but it's taught me to deal with pain and see the good in life. Not to take things for granted. I've been sober almost 21 years, I stopped going to AA meetings after around 10. I found myself judging others when they would get into all the drama about having a flat tire or something while I was living with this body and 24/7 pain. So I found another place to go to which helped me deal with life. In many ways this has made me a better person now if only the progression could stop i'd be grateful, lol.

I had my ultra sound last week on the mass on my thyroid and other gland problems, I get the results Thursday. I'll try and write more soon after that.

Time to rest and then go to bed. Thank you all who read and follow this.

it's been a long time....

First I don't even know where I left off and feel bad that I havent kept this caught up. A part of me has been busy with UCSF, another part is in a small depression and the rest of me busy with sales.  I'm getting REAL tired of going to UCSF 1-2 times a week, it's no way to spend life but I keep telling myself to give it to the end of this year. They have been able to find the cause of my double vision and have glass's now to help. They cant stop the progression of it but thats a one day at a time deal.

I found most doctors there are the most kind and supportive but there are a few that dont care. If they cant see whats wrong then they rather send you to someone else and not deal with you. Meeting one of those recently caused my depression and brought me down to reality that UCSF might not be able to help. Each invasive test they do just gets me worse. They keep finding things wrong but not the underlining cause of all of them. One of my old doctors told me this week that along with the autoimmune/muscle skelton that I most likely have a gentic & and enviormental gentical problems in my overall cells, genes and all those things that make up our body. Something in mine didnt form correctly, didnt form at all or I'm missing some important working genes and whatever that "stuff" is. He said I've been dealt a bad hand and may never find out whats wrong. That the doctors need to concentrate on making me as comfortable as possible and let me go on with my life. It was nice having a doctor be honest about my life span. He said it will be shortened which I already knew inside but hearing a doctor say it opening felt good. Finally someone who's honest and upfront. It's kinda like my dog, she has problems, on medications and I know she wont live till she's 15 but will to around 10. Thats how my body/health is.

I'm so tired of my life being all about my health, yes it's always going to be there but doing all these trips to the city and tests is causing more stress...when is it time to stop?  If I stop to early I might miss out on them finding something to stop the progression, i know me and will know within when that time is here.

I want to date, meet people and continue with my business that I love. Thank god for that, my buyers bring me so much joy. Yes, I wear myself out sometimes working to much but it really helps me stay in balance which is what I need.

Talking about business as many people know MAC has changed there jars, thankfully I made sure to get a couple of each of 90% of my stock before they sold out. To this date the only colors in the new jars are the 2 new one recently released. For now nothing will change:)

It's getting late so sorry for any spelling errors, I'm going to do a spell check later, lol...cant keep my eyes opened:)