Video

LUPUS LA I AM INVOLVED IN THIS VIDEO TO HELP OTHER’S IN NEED BY SHARING

LUPUS LA IS THE ONLY PLACE ON THE WEST COAST A LUPUS PATIENT CAN TURN TO IN A SITUATION WHEN YOU HAVE NO FUNDS IN ORDER TO MAKE WHAT YOU ARE IN NEED OF HAPPEN. THEY CAN ASSIST UP TO 500.OO DOLLARS . MANY PATIENTS GO WITHOUT VERY NEEDED NECESSITIES. YOU DO HAVE TO FILL OUT PRIVATE INFORMATION AND MEDICAL RELEASE BUT I WAS SO THANK FUL THEY CAN DO SOMETHING. I GOT SO USE TO BEING TURNED AWAY. THANK YOU LUPUS LA

POEM : WHO SHE WILL GROW TO BE

I AM A MOTHER WHO’S LOVE IN LIFE IS MY CHILD

I WONDER WHO SHE WILL GROW TO BE

I WONDER IF I WILL BE THERE TO SEE

I THINK A LOT ABOUT THE DIGITS EIGHTEEN

MY GOAL FOR NOW IS TO MAKE IT TILL THEN

HOPING THAT TWENTY ONE BECOMES THIRTY

AND MOTHER IS THERE TO SEE

TO SEE WHO SHE WILL GROW TO BE

-CJP

(THIS WAS WRITTEN BEFORE MY CHILD WAS 18 NOW 25 !!, THIS WEIGHS ON MY MIND ALL THE TIME, NOT BEING THERE TO SEE. ALSO GIVE ‘S US MORE FIGHT SO WE CAN SEE. OUR CHILDREN GIVE US MUCH MORE STRENGTH, I BELIEVE THAN BEING ALONE. I DO NOT KNOW IF I WOULD HAVE AS MUCH COURAGE WITHOUT HER. I WANT TO KNOW SHE IS HAPPY, HEALTHY, WISE , SUCCESSFUL ETC. AND KNOW SHE WILL BE OK. I KNOW ALL PARENTS FEEL THIS, I MAY THINK  THESE THOUGHTS  MUCH MORE OFTEN DUE TO MY DISEASE. BUT ANYTHING CAN HAPPEN ANYDAY EVEN IF WE THINK WE ARE FINE, SO CHERISH EVERY MOMENT THEY ARE ALL SPECIAL MOMENTS. I WANT TO SEE, SEE WHO SHE WILL GROW TO BE.

 Can I have children if I have lupus?

Twenty years ago the answer would have been “no.” But today, successful pregnancy and childbirth are possible. It is wise for lupus patients to be in the care of a high-risk ob/gyn.

I DO NOT WANT TO DO CHEMO THAT’S ALL I HAVE TO SAY RIGHT NOW IM HAVING AN EMOTIONAL TIME OF IT

MY COGNITION WORKS DIFFERENT .  TO EXPRESS IT I AM TOLD TO LET PEOPLE KNOW BASICALLY ONE THING SO THEY CAN TRY TO UNDERSTAND MY FILING CABINET IS FULL THERE IS NO MORE SPACE TO HOLD INFORMATION. WHAT EVER THOUGHT COMES TO MY MIND I NEED TO EXPRESS IT RIGHT AWAY OR IT LEAVES ME OR WRITE IT DOWN. THINK I AM STRANGE BUT THE BRAIN WORKS IN VERY INTERESTING WAYS. LAST NIGHT AS I WAS IN THE SHOWER I HAD A RANDOM SONG COME TO MY MIND I GUESS IM WAS FEELING SCARED AND ALONE BUT AT THE SAME TIME LAUGHING AND CRYING ABOUT IT ALL. AT RANDOM COME UP WITH RHYMING POEMS AND LAST NIGHT WAS:

 

” IT’S MY BIG 50 DOES ANYONE KNOW”

“NO I’M NOT A HOE”

I’M SITTIN HERE ALL HE-LONE

FAR FROM HOME

LALALALA LOL…….

THEN I REALIZED AT THE TIME OF DIAGNOSIS THE OUT LOOK WAS NOT GOOD I HAVE MADE IT TO MY 50TH YEAR, WELL ON MAY 26TH I WILL HAVE MADE IT , I BETTER ( I THOUGHT OF ALL THIS THEN I SAW A VIDEO TODAY OF ANOTHER WOMAN EXPRESSING THE SAME ) SO, FAR IT HAVE BEAT THE ODD’S AS MY PROGNOSIS IS NOT GOOD BUT I HOPE TO KEEP BEATING IT AS LONG AS I CAN , THOUGH I AM NOT GOING TO LIE IT IS HARD AND SOMETIMES I FEEL LIKE I JUST CAN NOT DO IT ANYMORE. I DON’T WANT TO GO TO ANY MORE DOCTORS . I FEEL LIKE A COW ON A MEAT HOOK ,THAT IS HOW I FEEL. AT THE SAME TIME I KEEP HOPE IN THAT I GET TO FEEL LIFE AGAIN. LIFE WITHOUT SUCH A SIMPLE THING AS ARISING FROM THE BED BECOMES ONE DAY A SIMPLE THING .

ALSO STATS ONLY TWENTY YEARS AGO BASICALLY STATED HAVING A CHILD WOULD MOST PROBABLY NOT HAPPEN I AM LUCKY TO HAVE THE MIRACLE OF A DAUGHTER ,WHO IS OF COURSE TO ME ,THE MOST SPECIAL GIRL IN THE WORLD.

 Can I have children if I have lupus?

Twenty years ago the answer would have been “no.” But today, successful pregnancy and childbirth are possible. It is wise for lupus patients to be in the care of a high-risk ob/gyn.

 

 

SCANNED OUT

SPECT SCAN DONE

PET SCAN DONE

MRI/MRA DONE 

WHOO HOOO HURRAY SO TIRED NOW MORE NEW OF MY BRAIN TRYING TO PIN DOWN TREATMENT PLAN BUT THIS INVOLVES MANY SPECIALISTS.  NEUROLOGIST, HEMATOLOGIST, RHEUMATOLOGIST, TO NAME A FEW. THERE ARE MORE SO MANY APPOINTMENTS AHHH . 

SCANNED AND TESTED OUT ENOUGH ALREADY TIRED

SPECT                               DONE

                          

PET                                       DONE

MRI/MRA WITH FLAIR          DONE

SSEP’S                                  DONE

EMG                                      DONE

ULTRASOUND                      DONE

 

MORE BLOOD , ANOTHER LUMBAR PUNCTURE, LOTS OF TEST’S ONGOING BUT ACCOMPLISHED MANY!!! YAY.