i dont wantto giveup

hey all,,
hw ru?hw s ur life going on?
what about ur future plans?do any thala patient has any mate?
sometimes i feel where my life is going?
actuly i want to live my life positively'n i dnt have any problem with
thala.,i dont want to give up.
but sometimes I feel no one understands my problems..
do you also feel like this?
hope you all my friends will understand   
 ok bye friends
take care..

Hi Anie,

I don't claim to know exactly how you feel, but i can safely say i've been there?
Being thal major can get pretty lonely sometimes. Especially when i've no thal major friends around my age in Singapore.

At times, i wish i have someone to talk to and vent, someone who knows what i'm gg through. Most of the time i'm fine, i feel like a normal person. Only time i'm reminded of my condition is when i've got to do my injections and go for my blood transfusions, which is very often!! 2 weeks.

i've had depression a few years back, before.... it came with my eating disorders, so i was put on prozac. now i'm on a tablet of prozac daily to 'maintain' and to avoid slipping back into depression.

i started working last year. Was kinda hard initially, jjuggling transfusions, chelation and work. but i had support from my family and then bf. now i've kinda settled into a comfortable routine

i try not to think of my health probs most of the time. i think i'll go mad if i do. i mean like, i also have hep c, and my doc is pressuring me to undergo interferon treatment. i've been putting it off for like ages... years!! main reason being it's a very troublesome treatment, and the success rate is not very high. i dunno what i'll do if the treatment fails. currently im just monitoring my liver functions. had a biopsy done a few years ago.

i live one day at a time. life is really too short and unpredictable.

i've had boyfriends before, and i usually tell them about my thal before things get serious. i was previously in a long relationship with this guy. nearly 4 years. he's very supportive of my condition. he knows he can't do much but he tries to be there for me. like he rubs my back when i do my desferal, and nags at me to do them!! he's the only 'outsider' (not family members) i've allowed to see me having my blood trans. well, we broke up over other issues tho. and now i'm currently dating around. if i find a mate, great. nevertheless it won't be the end of the world if i don't hahahha. my mum is nagging at me to get hitched tho  she's scared i'll be left on the shelf 

it's great to be able to share on this forum. and to get support and advice from ppl who actually knows what's gg on.

here's a huge hug for you 
take care, i'm always around, should you need anyone to talk to

cheers

hi Anie :
sometimes i aslo feel like u mentioned ... i know it hurts but it doesnt mean to give up ...dont think to give up bcoze i have experienced doing this.. and i have paid for that....... when i decided not to fight i got realy tired ...bcoze of that sticked to wheelchair for a long time   .... it toke five yrs to get back into good health..  in short words i learned that no one can even die by wishing or by  giving up ,or by stop fighting for good health ....soo keep fighting .... n never losse hope ... czoe i heard that " Hope Die's in the end " or "Hope die's and The End " ............. take good care of ur self... and plz keep us informing abt ur health ................           

Anie,

To answer one of your questions, yes, thals do marry. Many thals marry. I personally know many married thals and even thals from places in Asia where it was once considered impossible, are now marrying. Maako and Akka have both married in the past couple years along with some others from Maldives, opening the door for all thals to feel that they can marry there. The stigma that thalassemia once carried is quickly disappearing around the world, as cultural barriers are broken down and advancements in treatment have made normal lives much easier for thals. I hope you can also look forward to this change in attitudes where you live.

Hi Anie,
As I was growing up, I sort of accepted that I would never find someone who could appreciate me as being special and so I never really felt that I could have a future with a special someone.
But at the age of 16, I met someone that I could talk to and a great friendship blossomed.
It was not easy for me to say what I had, so I virtually tossed it at him by pulling out all my needles and started setting up for my desferal. As you can imagine, the questions camed and it was easier for me to answer than trying to find a way to explain myself. He learnt pretty fast that I am normal and accept me as I am. That was 20 years ago and we are very much happily married and enjoying all the trials that life throws at us. Sometimes it is hard for him to understand what I am going through, but at the end of the day he is still there with a shoulder or an ear to lend.
Don't worry, if we keep aiming for the sky then soon we are hitting the stars.
 

hey friens,
hw ru?thanx 4 reply  share ur feeling wid me.
m very glad dat i found this site,
i have many thala frns here in my city
even me going on cousin is also suffering 4m dis
newaz hw s ur life going on?
alwaz  keep in touch
take care

Anie!!!

Could you please write in english...This new language your talking with I dont understand most of what your saying..I am sure that most probably are wondering what some of the words are...

Progress report on Me!!!

I am getting better for now... But as of next week I will be starting my interferon treatment again, I had to stop cause of the really bad side effects that hit me with it...It doesnt happen to all but some people are more sensitive than others...
This time round I am going to be having GCSF injections as well to keep up my white cells...This will stop me from getting neutropenic and sick..

I am still working as well cause standing doesnt make my back sore much...

As for my back we still dont know what the cause is..I am seeing a specialist next week some time and hopefully he will be able to tell me..

But for now all is good with me...Have been trying to be more active cause it has been frustrating not being able to move about as I would have...

Will keep you all posted some time next week...or sooner...I cant sit down for very long on my pc cause the pain in my back just starts up...

Andy if you see me on face book its my sister... I ask her to check my msgs for me, she comes here so often to see how I am going and I ask her to check them for me...I am in the process of getting a Laptop so hopefully will be able to lie down and chat with you...

Take care all
Theodora

Best wishes for you Theodora 

ZAINI.

Hi Anie,
I'm glad that you found this website too.  I am also glad that you aren't going to give up - and if you ever have a rough day we are here to cheer you on    

We all understand how you feel here - and we are happy to help you.  We are here to support you so don't ever let anything bring you down:)   Please continue to keep in touch and let us help you.  Good for you for making the effort to find help and support:)  

We all go through some very difficult times - and we celebrate the good ones together - I hope you will share with us too:)  This is a place to come when you need to escape judgement, ridicule and ignorance - welcome.  

Love Sharmin

Hi Smurfette,

I believe, English is not anie's primary language; so I think no matter how she types, but as long as we can understand what she is trying to say, then I think we should not be concerned about it.

You should have seen some of my classmates in our English class. They were my teacher's nightmare 

Wishing you all the best for your health.

Hi Anie,


Glad to know that you are doing good.

Feel free to tell us more about yourself. Tell us how you and your friends are managing Thalassemia in your city/country.

Tell them to join our family too. They are more than welcomed.

Hi anie :
its  realy good to hear that ur good.. b happy keep smiling  .. kickout  the worries to ur life.. and keep posting ..

Hi Smurfette,

Interferon can be a very harsh drug. I hope you can manage it.

Has the doctor said anything about the possibility of an extramedullary hematopoiesis being the reason for the back pain. I am finding that far more majors experience these than what has been previously thought, as it was more commonly seen in intermedias.

hi im newlly diagnose with thal minor.. and i feel helpless. its like  im a bomb waiting to explode.. it seems there is no chance for romance for me and i am coping with through learning my disease... and be inspired all the people in this community

this site is very helpfull
thank you

Hi carmi13 :
how  ru ?.. well your will not feel helpless anymore .. you are on right place to get help about understanding thalassemia ... WELCOME to the site Carmi .. feel free to ask everything you want to know about thalassemia  ... i hope you will find this community very helping, as i found it  ... i hope you will find answers of all your questions here on this site ... dont hesitate to ask watever you want to ask ... start asking and get knowing abt it .... keep posting

Best Regards
Take Care