To take the medicines or not to take the medicines ?

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Patients Lupus

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TO ALL OF US WHO HAVE A DISEASE, THAT NOT MANY PEOPLE, DO NOT KNOW ABOUT!!!  (SYSTEMIC LUPUS) MANY PEOPLE GET A HARSH QUICK AWARENESS IF, THEY HAVE LUPUS OR SOMEONE IN THEIR FAMILY HAS LUPUS.!! NOT MUCH MONEY IS GOING INTO AWARENESS. I ALWAYS THOUGHT THAT AWARENESS IS AS IMPORTANT AS RESEARCH. WHY,

NOT MANY PEOPLE WLL DONATE FOR RESEARCH IF THEY NEVER HEARD OF LUPUS. YES, OVER THE YEARS MANY PEOPLE AND SOME PUBLIC AWARENESS HAS HAPPENED. IF IS UNFORTUNATE, IT IS NOT A MEMBER OF THE "DISEASE OF THE MONTH CLUB, I CALL IT"..... THEY SAY: "DO YOU KNOW SOMEONE WITH LUPUS, OR LUPUS THE PART OF ARTHRITIC PAIN.

IMAGE, IF YOU KNOW SOMEONE THAT HAS LUPUS, THEY ARE TOO SICK TO HELP IN THE PUBLIC AWARENESS SECTION OF PUBLICITY.

I HAVE DONE AS MUCH AS I POSSIBLY CAN IN SOUTHERN CALIFORNIA AND IT IS STILL NOT ENOUGH. IN MY NECK OF THE WOODS, I ALWAYS MEET SOMEONE THAT SAYS " I HEARD OF IT BUT, I DO NOT KNOW ABOUT IT"!!!!!!! THAT KILLS ME WHEN I HEAR THAT STATEMENT. I HAD SHARED A HOSPITAL ROOM WITH AN ITALIAN LADY  WHO SPOKE NO ENGLISH.(1990'S) I ATTEMPTED TO TRANSLATE TO ENGLISH FOR THE NURSES. I BRUSHED UP ON MY ITALIAN QUICKLY!!! THAN THE LADY PASSED AWAY AND HER SON CAME INTO THE ROOM.. HE SAID "THANK YOU FOR MAKING MY MOTHER;S LAST DAYS MORE COMFORTABLE, CAN I DO ANYTHING FOR YOU. CAN I PAY YOU.   HE SAID IN WORKED AS A PRODUCER FOR CHANNEL 2 AND 11 IN CA. I SAID YES, PLEASE CAN YOU PLACE A COMMERCIAL FOR LUPUS AWARENESS?? HE SAID "YES"!!

I WAS THRILLED!!! HE HAD MINNIE PEARL DO A 1 MINUTE COMMERICAL ON "DO YOU KNOW SOMEONE WITH LUPUS?" IT WENT SO QUICKLY!! I WONDERED IF ANYONE HEARD IT OR KNOWLEDGE GAINED FROM THE PUBLIC.. WELL, MY NAME WAS EXPOSED, IF ANYONE CALLED THE TV STATIONS. I GUESS THAT WAS BETTER THAN NOTHING. VERY RARE THESE DAYS YOU HEAR ABOUT SYSTEMIC LUPUS ON ANY PUBLIC TV OR RADIO. I THOUGHT THIS WAS BETTER THAN NOTHING. NOW, TODAY 2019, I HAVE BEEN SO SICK. I HAD TO STOP ALL LUPUS SUPPORT GROUP MEETINGS. I TOOK RESPONSIBILITY FOR AWARENESS IN ONTARIO, ALTA LOMA AND THE LOCAL AREAS. THE HELP WAS VERY LITTLE WITH THE ARTHRITIC FOUNDATION. IT WAS BETTER THAN NOTHING. I ONLY WISH THAT SOME PEOPLE THAT WERE IN HOLLYWOOD WOULD COME FORWARD. EXAMPLE

RICHARD DRYESS, HIS WIFE HAS LUPUS, AND SOME OTHER PEOPLE IN THE LIME LIGHT.  SO, HERE I AM LIVING IN A PLACE I NEVER THOUGHT I WOULD BE. RANCHO CUCAMONGA, CA . I USE TO VIEW A CARTOON ON TV WITH A COWBOY NAMED SAM ON A RAILWAY SAYING "NEXT STOP IS 

RANCHO CUCAMONGA"!! WHO WOULD KNOW I AM NOW A RESIDENT OF THIS CITY.  I HAVE ATTEMPTED TO ASSIST AS MANY PEOPLE AS POSSIBLE. MY THOUGHTS WERE " I HAVE BEEN BLESSED TO GET SOME LAW SCHOOL UNDER MY BELT. NOW HOW AM I GOING TO USE IT"?  I HAD MEETINGS IN THE AREA, AT HOSPITALS UNTIL WE HAD NO ROOM FOR THE PEOPLE TO SIT. SEATING WAS LIMITED AND PEOPLE WERE IN THE HALLWAYS OF THE HOSPITAL CAFETERIA.  THAN IT HAPPENED, I GOT SO SICK AND I HAD TO STOP ALL THE MEETINGS. THE PERSON THAT HELPED ME, ALSO HAD LUPUS ALONG WITH HER SON--2 PEOPLE IN THE SAME FAMILY, MOTHER AND SON WITH SLE, LUPUS.  WOW, I LEARNED AS MUCH AS I COULD FROM THEM AND THEY DID NOT MIND. IT IS JUST NOT SO SIMPLE TO RELY THE EXPERIENCE ESPECIALLY WHEN YOU ARE SICK YOURSELF. I DID THE BEST I COULD AND I NOW THINK MY BEST WAS NOT GOOD ENOUGH. I PRAYED!!THAT EVENTUALLY , SOMEONE WOULD PICK UP WHAT I STARTED AND RUN WITH IT. NO WAY, NO LUCK!!!!!!!! I DID AROUSE SOME PUBLIC AWARENESS BUT, NOT ENOUGH. MANY PEOPLE CONTACTED THE NEWSPAPER BUT, THEY COULD NOT TAKE NAMES NOR WOULD THEY GIVE MY PHONE NUMBER. THAN I SAID TO MYSELF, WHAT GOOD WAS THE ATTEMPT OF PUBLIC AWARENESS. NOT MANY PEOPLE, SAW THE COMMERCIAL NOR READ THE NEWSPAPER. THAT IS WHEN I REALIZED EVERYONE WAS TOO SICK!! SO, HERE I AM TRYING AGAIN TO REACH THE PUBLIC. CARENITY, HAS BEEN GREAT JUST TO PRINT  THIS SMALL  ARTICLE FOR ME.... I PRAY IT REACHES THOSE WHO WANT TO HELP  THOSE WITH LUPUS AND LUPUS PATIENTS ALL OVER THE USA. HERE IT IS PLEASE FEEL FREE TO WRITE ME:

MICKEY AKA M. MCNEILL   *** **** ***** //R.C., CA 91737

THANKS IN ADVANCE FOR WRITING CARENITY AND GIVE THEM THUMBS UP FOR TRYING TO HELP THOSE WITH LUPUS OR KNOW SOMEONE WITH LUPUS!!!

MQM

Beginning of the discussion - 1/15/19

To take the medicines or not to take the medicines ?


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@mickey‍ I agree with you... I wish more people knew about lupus... However, I have noticed more and more people having some type of awareness of it, like they know it is a disease affecting the body systemically, but just are not sure what it exactly does or is... So I commend you on really trying to focus on that!

I sometimes feel as if I do not have enough energy to expend trying to explain people about it! Do you ever feel like that?

I wish I was in CA, I am jealous!

To take the medicines or not to take the medicines ?


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@mickey‍ I am interested in knowing what you meant by the subject of your post, to take the medicines or not? 

To take the medicines or not to take the medicines ?


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DEAR MVN481,

THE MEDICINES HAVE SIDE EFFECTS. SOMETIMES, WE HAVE TO THINK --ARE THE SIDE EFFECTS WORTH THE PRICE?? EVERY MEDICINE, HAS A DARK SIDE...MANY OF THE DOCTORS, WANT TO MAKE US COMFORTABLE. WE NEED TO ASK--WHAT ARE THE SIDE EFFECTS?? ARE WE GETTING THE OPTION, TO CHOOSE,THE MEDICINES?  IS IT WORTH BEING PAIN FREE?/. SHOULD I ASK?? IS IT GOING TO GIVE ME ANOTHER PROBLEM.  THE PHYSICAL AND MENTAL ALTERATIONS, AM I PREPARED?? THIS DECISION IS YOURS AND YOURS ALONG. DO NOT LET THE DOCTOR, MAKE THIS DECISION FOR YOU!!! EACH PERSON NEEDS THIS OPTION....

I HAVE FOUND THAT YOUR FAMILY DOCTOR HAS MORE COMPASSION THAN ANY OTHER DOCTORS!!   THE OTHERS DOCTORS LISTEN TO OUR COMPLAINTS AND WRITES A PRESCRIPTION ACCORDINGLY. NEVER, TELLING US THE DIRTY TRUTH OF WHAT HAPPENS TO THE BODY WHEN WE TAKE THEIR PRESCRIPTION. PLUS --HAVE YOU EVER HEARD THAT "IT WILL MAKE YOU PAIN FREE!!!"  BUT, DON'T YOU WANT TO SEE THE SIDE EFFECTS, BEFORE YOU TAKE THE MEDS??WE FAIL TO ASK THAT QUESTION BEFORE WE TAKE WHAT THE DOCTORS RECOMMENDATIONS.. BECAUSE WE ARE SUFFERING. IF YOU SUFFER ENOUGH, YOU WILL TAKE ANYTHING THAT WOULD TAKE THE PAIN AWAY!!!!! HAVE YOU EVER FELT LIKE THAT?? I HAVE!!!

NOW, I AM OVERWEIGHT, MY BONES ARE BRITTLE AND WORSE OF ALL, MY EYESIGHT HAS BEEN DAMAGED. I NEVER HAD DRY EYES, NOR NEEDED GLASSES UNTIL I TOOK CERTAIN MEDICINES. I NEVER WAS GIVEN THE OPTION OF KNOWING--- THE SIDE EFFECTS...DON'T LET THAT HAPPEN TO YOU!!!!! THAT IS THE PURPOSE OF THIS PARAGRAPH.  TO MAKE YOU AWARE OF THINGS THAT --NO ONE MENTIONS...SO, THINK BEFORE YOU POP THE NEXT PILL DOWN YOUR THROAT. OK?? ASK YOUR DOCTOR WHAT THE SIDE EFFECTS ARE FIRST!!!!!

THAT IS ALL FOR NOW!! I AM EXHAUSTED BUT, I HOPE I HELPED YOU SO YOU CAN HELP YOURSELF.

ALWAYS MICKEY AKA MICHELE (Wishing for more PAIN FREE DAYS, FOR ALL OF US)!!

PS: JUST TO LET YOU KNOW, I HAVE WRITTEN MANY THINGS IN MY POST. I HOPE IT MAKES SENSE TO ALL OF YOU!! I HAVE BEEN WRITING THIS AND IN PAIN SOMETIMES!! I APOLOGIZE!! I WONDER, IF I HAVE REACHED ANYONE WHO IS SUFFERING AND DO THEY UNDERSTAND WHAT I WROTE. PLEASE FEEL FREE TO CONTACT ME!!  THE INFORMATION PROVIDED ARE MY OPINION AND MY SITUATION. THAT MY EXPERIENCES AND PEOPLE I HAVE MET ON THE WAY!! I WANTED TO GIVE SOME OF YOU HOPE FOR A BETTER TOMORROW. PLEASE PRAY FOR ME, I AM JUST AS WEAK AS YOU ARE, OR MAYBE WORSE.

mickeyitaly3@aol.com

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