I AM FRUSTRATED!

I just got out from the hospital a few days ago after my blood transfusion.  My baby is doing okay and I am grateful that my transfusion went well.  I've got so much to thank God for.  But sometimes I still have my angst deep inside.  There are times I just want to shout and cry. 

I don't know, but why do I feel so alone with no one to turn to except my family in facing my Thal condition in this country!  It is as if no one else cares except perfect strangers from the internet.   

How I wish Filipino's are more concerned and are more willing to share information about our Thal condition.  It is already frustrating that it is rare around here in this country where people are so ignorant of the condition, and I feel worst that there are Thal Filipinos who are not willing to open up.  There are people who know about it here, but they are too selfish to share or too dumb to keep silent about it.  If there are more of us who speak up about it here, then it will be better understood in our country.  If there are more of us who would brave to face the label then Thalassemia would not be something taken in like cancer, a disease, an abnormality  in this country.   

Hi Lei,

it's nice to hear that your baby is doing well,and about shouting and crying, it happens with all of us,at times we feel really helpless that we want to cry ,but please at least u have a family, there are people in the world who have no family,so cheer up  and please we are not perfect strangers from the internet,we are one big happy family  aren't we we care for each other nd we love each other,bcoz we are facing the same insanity and injustice from the world,it's same here in Pakistan as Phillipines,people are not willing to share,they treat thals like some freaks,something to be ashamed of, and IT IS NOT SOMEHING TO BE ASHAMED OF ,but people here behave like morons,they don't know a bit about thals,they won't even bother to research,they just keep passing comments,when my daughter was diagnosed ,i had to keep it silent, bcoz people here don't know much about it, they'll just treat my daughter as a sick person,,staring at her,,passing pathetic comments,,and who need their stares??,so please cheer up,you are going to have a miracle from GOD,and i am seeing my daughter in you, thal moms like u gave me the inspiration and strength that my daughter will become a mom one day making me grand mother  :winky

LOVE YOU, :hug
ZAINI.

Hi, Lei.  I'm so glad to hear that your baby is doing well, and your transfusion went well, also.  You have every right to feel angry, and want to shout and cry.  We all feel that way at times.  You can always talk to us here.  I know that it's not the same as being able to talk to others face to face that know what you are going through, but it's definitely better than not having anyone at all.  We are your friends, no matter how far away we are.  We are here for you.   

Thanks Danielle and Zaini for the comforting words. 

I am due to give birth in 30 days, and the highest my blood reached after my transfusion is 9.8 grams.  Anyway, I might deliver before the May 16 due date, because my ob-gyn is opting for a c-section if my blood level won't improve after my next pending transfusion prior to my baby's due date. 

Please include us (my baby and I) in your prayers.  I am hoping that he won't inherit my thalassemia and that he will remain healthy.  I also want to take care of my baby after I give birth.  I actually even want to breastfeed him.  I just hope that I will manage well during his delivery and not go into any more complications.