It’s seems only in my Dreams how one day again I will be lying on a beautiful beach, with my toes in the soft sand, my aching body floating in warm soothing water, my eyes staring at the wonderful sky. I Dream this Dream each and every day. I dream and dream . While I stare at all these walls, all i want to believe is this is not real , not walls. Life , I want to live life . To see beautiful nature , sleep in it , eat good food, beautiful food i see in many pictures, in my world it is hard to grasp but i still dream of it all. ” I don’t want to just survive . I want to live. I want a break . I want a cure. If not for me -for other’s.” Personally i missed this past November all the way unitl this April, and many days months, for years. So many procedures, surgeries, illnesses , done with one go right onto the next.. I hope one day no one will have to endure a body that needs a specialist for every body part. It is too much, then trying to survive all the other aspects of life, when nothing is left. is a battle that will never go away. Unless a miracle comes. -cjp 4-30-15

VERY ALONE IS HOW I FEEL I TRY TO PRETEND EVERYDAY SO PEOPLE DO NOT BE BOTHERED WITH ME I TRY AND TRY IT TAKES ALL MY MENTAL MIGHT TO DO ANYTHING.  TO GET DRESSED IF I DO I A 2 HOUR EVENT AND THEN I HAVE TO REST AFTER TO EVEN LEAVE.

I WISH I KNEW HOW TO SHARE LINKS BUT “THE SPOON THEORY” PERFECTLY EXPRESS HOW DIFFICULT THINGS ARE AND IM IN A SEVERE, AND GUARDED SITUATION . I FEEL I DO VERY WELL FOR WHAT IS HAPPENING WITH ME. BUT PEOPLE DO NOT UNDERSTAND I DO NOT EXPECT THEM TO BUT WHAT I HOPE FOR IS FOR THEM TO JUST BELIEVE ME AND AT LEAST HAVE COMPASSION , TOLERANCE, AND DIGNITY.

One of those nights can not sleep but need. i dream of so many things that people take for granted daily. it is difficult to see all the life just pass by , when to me it is just dreams , so much time passes and i dream of all these things people are fortunate to do ,see, eat, i can not anymore

My immune system is so weak ,i have literally been fighting this new thing for 2 months from the first er visit of this new things i am trying to beat added to all of the chronic up and downs.  I want a break , Feel like I am missing out on so much life going on in the world around me . On antibiotics for 2 full weeks starting christmas eve and spent everyday to ill to do anything for pleasure in any way, still ill . Ended the coarse and got worse with in a couple days.   Now started a new medication and I just hope and pray every night before i sleep please give me some relief and please let me see a sunset , a beach something peaceful and relaxing before another months slips by.

I CAN NOT DO THIS ANYMORE I NEED TREATMENT I AM NOT ABLE TO GET IT BEEN NON STOP DOWN WARD SPRIL I HAVE BEEN AT THE ER /URGENT CARE ALOT AND I M ON MEDICINE I NEED CHEMO AND CANT DO THAT DUE TO MY IMMUNOGLOBLINS SO THE NEXT CHOICE IS IVIG BUT I LIVE IN A PLACE THAT THERE IS NOT REST PEOPLE DO NTO RESPECT OR JUST GIVE YOU DIGNIGTY PRIVACY AND REST. HOW CAN I DO THESE THINGS WITH OUT ANY SUPPORT . IM JUST TRYING TO STILL GET BETTER FOR MY LAST TO ER VISITS FOR SERIOUS ISSUES AND NEED TO TAKE MY MEDICNE AND REST. I GIVE UP WHERE I LIVE IS TERRIBLE I HAVE NEURO ISSUES WHEN I HAVE EMERGENCIES LIKE LAST NIGHT WHEN I LITERALLY LOST MY VISION FOR 2 HOURS NO ONE CAN EASILY GET TO METHEY COULD NOT FIT IN WHEN THERE IS NO OVERNIGHT PARIKING WHER I LIVE .  NO ONE CARES . IM SO TIRED UNPREDICATIBLE  COME UP UNEXPECTED JUST LIKE 2 TIME NOW IN A FEW WEEKS MY POSTASSIUM DROPPED I HAD TO CALL FOR HELP I DID NOT KNOW WHY I WAS SO ILL ONE FACITILTY SENT ME MY AMBULANCE TO ANOIGHTER AND THEN I GET BACK I AM NOT TO BE ALONE. BUT NO NO WHERE TO PARK . GIVE UP. ASSHOLES WON IM TO WEAK TO KEEP FIGHTHING

I HAVE NOT FAMILY MY FATHER DIED AT 38 I HAVE ONE BEAUTIFUL DAUGHTER BUT I CAN NOT BE USEFULL.I HAVE NOT ENOUGH TO LIVE A HEALTHY LIFE AND I NEED TO DO SERIOUS MECICAL TREATMENT JUST TO HAVE A CHANCE. PEOPLE JUDGE AND HAVE NO IDEA I WORKED FULL TIME FULLTIME SINCE 15 8 HOUR DAY ONE THE BOOKS , WORKED ALOT WNET TO SCHOOL HAD DREAMS AND GOALS BIG ONES . TOOK RESPONSIBLITY OF MY GRANDMAOTHER UNTIL SHE PASSED OF COMPLICATIONS OF RHEUMATOID ARTHRITIS.  I HAD MANY RESPONSPILITIES AND DID THEM ALL UNTIL I ALMOST DIED OF A HEART CONDITINON AND CNS LUPUS IN SIX MONTH IS ENDURED CHEMO AND A HEART SURGERY I HAVE BEEN FIGHTING EVERY SINCE IT IS HARD TO FIGHT WHEN PEOPLE KEEP TREATING YOU LIKE YOU ARE NOTHGING AND THING YOU ARE A BUM WHEN THEY HAVE NOT IDEA HOW MUCH YOU HAVE REALLY DONE IN LIFE. AND EVERY DAY YOU ARE TRYING TO SURVIVE INA LIFE THREATENING ILLNESS THAT IS LITERALLY TRYING TO KILL YOU.;

BEHIND MY CLOSED DOOR

THROUGH ALL MY BATTLES TO SURVIVE

THERE WERE MANY DAYS I LAID AND CRIED

BEHIND MY CLOSED DOOR I CRIED AND CRIED

WHEN IT OPENED, OH HOW I LIED

FILLED WITH FEAR OF THE REJECTION I’D ENDURE

IT SEEMED EASIER TO MAKE BELIEVE I WAS OK

WHEN REALLY I WAS JUST WASTING AWAY

BUT, OH HOW IT WOULD HURT TO LEARN PEOPLE

KNEW I WAS ILL AND STILL BE LEFT BEHIND THE CLOSED DOOR

This is something one of my Doctor’s expressed to me:

My question was… I have told people many time’s I am not well , I have asked when are they going to see me and come over , that i am in need of help here and there.  The more i have to bring it up the sadder i get. The longer I am alone  and tell ,the more alone I feel .

Doctor’s Response:

You are Sick ,your job  is to get by each day and although you can never get better , your job is to do what you need to help your body.

You do not have the time or energy to make friendships right now. The one’s who are your friends will be there .  They need to pull together for you. You have already told them you are sick.  If they are your friends , they will come and see you without you telling them to, and help you. No one should expect you to do the work while you are ill. ?

This is post is inspired by a kind lady i meet this evening.

-Thank you

“AFTER A WHILE I REALIZED…WOW AFTER ALL THESE HURTS, SCARS, BRUISES. AFTER ALL THESE TRIALS. I REALLY MADE IT. I DID IT , I’M STILL DOING IT , I SURVIVED THAT WHICH WAS SUPPOSSED TO KILL ME. I’M STILL FIGHTING, TIRED BUT STILL…

I  REALIZED HOW NO MANY GRASP THE MEDICAL SITUATION I AM IN IT IS UNIQUE, UNCOMMON AND HARD TO GET IT , IF YOUR NOT IN IT.  ONE PERSON SAID THEY KNOW HOW IT IS THERE IS A TIME WHEN THEY HAD TO SEE LIKE 3 DOCTORS IN A MONTH AND I WAS LIKE THAT IS A NORMAL WEEK FOR ME . I ACTUALLY SEE MORE .

-RHEUMATOLOGIST

-NEUROLOGIST

-HEMATOLOGIST

-GENERAL MD

-ENT

-NUERO UROLOGIST

-NUEROGASTROINTEROLOGIST

-CARDIOLOGIST

-HERIDETARY CARDIOLOGIST FOR FH

-DERMATOLOGIST

-ENDROCRONOLOGIST

-NEURO SURGEON

-SPINE DOCTOR

-IMMUNOLOGIST

OK IM TIRED OF LOOKING AT THIS YOU GET IT

-Part is from author unknown. the rest is me

After seeing my Rheumatologist, neurologist, hematoligist, primary, another specialist all in 3 days with lots of more blood test now we find the treatment for my condition is Cytoxan which is chemo therapy. Even though a person may need a therapy their body may not be strong enough or a canidate of the treatment now They are considering IVIG as my next step . It all changes like a light switch, or blink of an eye my head is just spinning.   Anyway whatever treatment I end up doing is a life long challenge it is not something in my cards to do once it is an ongoing thing for the rest of my living live.  Gotta get some sleep back to UCLA now tommorrow for a long day full of specialists for all these multi system malfunction. I guess i am afraid to really tell people the fault in my stars. I hope someone truly cares . I am feeling very sad. When i go outside i smile and pretend and no ones truly knows and i am also tired of pretending.