I feel i have reached the end of my road.....

Umair,

I have now seen your posts in detail. What are you talking about? you said it by yourself: your health is  at its  best now. Isn't this a blessing? You achieved your goal and you'll succeed further on.
Maha is right, you should find something to occupy yourself instead of constantly thinking of thal. Get a job, go out, socialise, get new friends, new interests...DO SOMETHING! LIVE YOUR LIFE!

This is what you need right now. Everything else gets under control.

Lena.

brother umair,

please be strong....please find your inner strength.....
brother umair one thing we have absolute guarantee on when we are born......death.  we all have to die one day.....meanwhile we have to live.  in what ever condition we are in we must try to make the best of it. our health...we can improve it..our lives...we can't change the past but we can shape our future..our sicknesses..we have to learn to live with it..deal with it..manage it.
death is there....a 100% guarantee....everyone is fighting their fears...their inner demons...but move that demon out of the way...find that 'sakina'...find the sukoon..inner peace..and dear brother....live your life....

emby

1st of all i want to mention that i m not affraid ofdeath i m just worried about how to live the life ... i was thinking about the way  to spend life , i never been affraid of death in my whole life.  

@ lena, yeah,  its a blessing that  everything is fine now , yeah mayb i have alot time to think thats why this happened ...

Remember an idle mind is a devils workshop

i thnk it's the main reasonof all this ... i will start doing sumthing really soon .. Thanx alot for encouragement

@ Emby ,
as i mentioned abovie i never been affraid of death and  m not affraid of death now too , but never pray for that too bcoze that come's under the mourn'nes which  is not good  ,  so its not my prob .. probleme is to live until the time come's up   just kidiing , it was a bad patch , i was surrounded by bad thoughts and i behaved like a "dramay baaz " ...  Thanx alot sis, i dont know why i behave like a"dramay baaz" time to time, i m sure it wil happen again , but not in  soon future , you have to wait for a few months for the next story ( coming soon but not very soon :P ) .... Thanx for ur support sis , that made me feel better .... thanx alot for taking time to reply this weird thread  ... lots of Best Regards for your Kids ....
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i think i have to live the life as life want me to live it, i think i have to stop thinking and start living the life now, it will b better not to think and just to live it, i will try to live like i want, i will never think of give up again and cant think this as well, bcoze i have experienced the give up scene , that took me on wheelchair and that took my 2 years of my life, it took a long time to come back in life from that condition, i will live my life and will keep trying for good,  i dont wana see in my past that is  a harsh reality but i dont know what why and how that happened and won't to know as well ...

it define's this moment ver well
[bgcolor=#ffff00]Sometimes , God breaks our spirit to save our soul.[/bgcolor]
[bgcolor=#ffff00]Sometimes , He breaks our heart to make us whole.[/bgcolor]
Sometimes , He sends us pain so we can be stronger.
[bgcolor=#ffff00]Sometimes , He sends us failure so we can be humble.[/bgcolor]
Sometimes , He sends us illness so we can take better care of our selves.
[bgcolor=#ffff00]Sometimes , He takes everything away from us so we can learn the value of everything we have[/bgcolor]

i dont know why i didn't see the message of my own signature ...  dot wana say anything more. ...i dont know why i was thinking like that ....  i never been like that  NEVER , and i there r lots of people who canconfirm this that i neer been like that since i m here on  forum ... Thanx alot for bein there to make me feel fine and to help me get out of this , and to help me to be like old umair ...

i dont have any habbit of proof reading and reading post after writting and readin post bfore posting ..so , if you find sumthing upside down in this post or anything that is not good then dont hesitate to inform me , i will edit my post ....

Best Regards
Take CAre
Umair

Umair

I am happy that you feel much better now and i too agree that the lack of a goal in your life is behind all those negative thoughts. I am sure now it will be more easy to set a plan for your life since you  know what you need.

One more thing i want to mention. Don't ever get upset when doing mistakes, it is a way by which you learn the right way. We all make mistakes.
In the past, Thomas Edison  invented something after 8000 trails and after his achievemnts he didn'y say i did 8000 mistakes but rather said "Well, at least we know eight thousand things that don't work."


manal

Off topic:
I hope you don't mind I am posting this en public.
Umair, you are always positive. How do you do that? I mean you never really post here something that is written in a depression mood (like I do).  I can not really express this feeling into words. But I guess you know what I am trying to say.
I am curious about the way you do that.
Note: Other members from this community have this positive (or optimistic) way of life was well.

Look Dore , read the my posts of this thread i sent above ..
========================================
i was looking like an angel and more blessed thal than otherz thalz ..... llike i m one  who dont have any worries and facing nothing that can break confidence ,   i feel down too as other people, although it took long time to say that i face the worries probs and other this kind of things but i think its enough to prove, i dont wanted to post like i posteed above but i did to tell that i feel ups n downs but it doesn't matter, the thing that matter is if i can cop witht these ups n downs or not , that's wat this forum is for, to make you feel better when you feel down , to teach you how to get up and starting walking with life ... nobody is perfect and nobody is in-complete as well , its all about how finely we can discover our self our confidence our strangth and our abilities to survive , all wat we have to do is that we have to do is to find our inner self's strangth , we have to find wat else GOD has given us and wat kind of strength He blessed us with to survive in this world , all we need to have to find a solution instead off stop moving forward and crying that i dont know wat to do , thats wat i have learned ...  i had to proof that i expereince the ups and downs of life as well as others do m  not a superman like sumthing, all i do is to deal with it a smiley face   ... ii think m over-reeacting and all is fine now so NO more comment to my side ...

for the people who think that nice friend is a computer generated greeter who greet's people and always post something positive , nice friend  is a human like you , who always keep trying to not to say anything that cause de-moralisation for other members , but it was necessory to say this all to tell you people that nice friend is a human like you who is also facing lots of probleme he is not someone who is blessed more than you , all that he do is he controle posting anything that he think dis-couraging .... but this time he did this to show that he is going trough the samething things u people do , he's on same way with same probleme , my way of thinking is still the same  " dont think about the thing you cant change , and dont cry for anything if you cant fix that , live happy , stay happy, and always b happy in every condition you're livving " ... i think i have to keep making mistakes to assure new comers that m not computer m a human who is sending them greeting messages ....


@ Manal ,
Thanx Sis, for reallly encouraging quote, encouragement and support that you provide to help get out of this ...

@ all thalpalz
 i reallly appreciate all thalpals supporting messages who made me feel better and taught me not to feel bad and get up and get going , n start geting ride over bad patches ... Thanx alot you all , you're really good palz ...

i hope i didn't say anything again n again int his post and nothing that you can say wrong ... but if you find anything in this plz send me PM i will correct that , and plz when-ever you find anything in my any post then dont hesitate and feel free to inform me i will never mind, infact i will appreciate that if you help me finding out my mistakes bcoze i mm bad at proof reading and re-checking posts , i needd your help in this   , plz help

Best Regards
Take Care
Umair its a dificult task to Save ur reputation

 
 i dont  know wat i said and how i wrote that much long post  , its really dificult for me to read and understand my posts bcoze my posts r too long and too dificult to understand for me too ..

Umair,

All you need to do is get busy,look at Maryoom,she went bungee jumping,and i don't know why but i am really feeling excited for her,that proves that thals can do anything,you just have to have the will and belief in Allah 

Zaini.

Zaini,
yeah , i m seriously  llooking forward to start doing sumthing and add more activities to my life. i m looking for to not to sit infront of Monitor's screen all the day and use computer time to time a day , and start some physical and mental exercises and activities ... spending all the time on Pc is a boring activity and i have to avoid feeling bored to avoid thinking negatively , i think i have to keep my mind busy in a few more activities .. i will jjoin my family business, the only reason that left behind the delay of  start going there and joining my bro there is power load shedding that is more worsen at the site of comercial area where we have our shops than the area where our home is located ...  waiting for the right weather to go and join them bcoze load shedding probleme isn't gonna fixed till the end of this year and and the minister of this sector is unable to tell when it will b fixed .... i  m feeling excited to hear about maryoo's experiece bcoze it a new path way is open now for thals and happy to hear that thalz are challanging everything that people think they (thals) cant even think of that , now thalz are doing the things those even normal people cant chalange think of that ,, really glad to hear this .......  but i cant go for that bcoze my knees  ....  abt belief , its the belief bcoze of wat i m here , bcoze of wat i m still alive and in good shape , actuly back into good shape ..  m trying my best sis , won't to look back wat happened and how that happened but all the things that happened to has left there marks behind on me and my health , the mark's those will never fade up but i will try to forget looking at those marks and start loking on my aimz n goals to achieve them and to show all the thalz that they can get back in life to every kind of condition and all kind of damages can reverse if they comply with chelation and maintain their Hb level near normal range and to give them hope and to tell them   and encourage them to never think of give-up ... and i will proof this INSHA-ALLAH (GOD's willingly) ..

(again feeling to say : plz ignore if it sound bad and if u feel anything appropriate in it  then plz ignore bcoze i never mean/sound to b rude/harsh )

Best Regards
Take Care
Umair

hi how is everyone ?
update on master aysam
getting liver biopsy very soon
his iron is still very high 4000
never has his iron gotten down from last year untill today it has been over 2000
his doctor thinks he could alreday have liver damage and if his biosy shows 40 ml he ill stay in hostital for 1 year with a iv intrevein
can somene please explaine doctors telling me that they dont know why
maybe the exjade isnt working for him he is on 625ml
maybe its iron overload
maybe false reading all the time
maybe he always has infections wich cuses high iron lveles mmmm
maybe maybe maybe not good enough

results AST 230
          ALT 688
          BILIRUBIN TOTAL 8
CAN SOMENE EXPLAINE what is happeing
is it from exjade is it from to high iron for so long
is exjade not working
to much infections
and if his iron levels show 4000 and been high for 1 year over 2000 can it be liver damage alreday is it revesable
can he have like doctor said over 40 ml
i told doctor that hy we dont use desfral and exjade i read artical from dr ali taher and thats hat there doing if exjade dosnt work alone shhe siad it sounds like a good idea am i the doctor knw
oh yes i told u all about kids i have in my care b4 they are looking for new home for them
everytime i book to go to lebanon somthing bad  happens i am booked for 14 september
and today doctor said not advise to travel
she said if his liver biopsy shows 40 ml meens he needs 24 7 desfral
help me what should i do she said she thinks its noit that much but thinks its nearly there ?\
SHOULD I NOT DO THE LIVER BIPOSY AND JUST GO ON THE 14 SEP AND DO IT LEBOANON
or listen to her i am so confussed
help me is there another way getting rid of the iron like noit 24 7 in hostpital
please advise everyone
i was going to see professer ali taher
ive been saveing for so long for this and evertime something bad happens
should i do the test then leave do u think that the test can be bad with his iron over 2000 for one year
and no 4000
please

Mariam,

How much is Aysam transfusing,i mean how frequently? How much blood does he get in every transfusion,what amazes me is that he is very young to have that kind of iron over load,and how can his liver be damaged,it takes years to build up that much iron.

I don't know anything about Doctor Ali Taher,may be Manal can tell you anything about him.And why are you doing liver biopsy,is ferriscan or SQUID not available in Australia?

May God bless you and your family.

Zaini.

Ferriscan is actually based in Australia and is readily available but use on young children is limited because they have to lie still for awhile. It really depends on the child. Dr Taher is a world renown thalassemia specialist and has a very good reputation.

I do agree that Aysam should have 24/7 desferal to clean out his liver. It is hard to say if the high liver readings are solely due to Exjade or if the high liver iron is a factor. But right now, getting the iron down should be a priority.

I too agree that Dr. Taher should see him as soon as possible. Mariam did you rule out any other disorder that can aid in this iron overload. ?

manal

Mariam,

I hope that Aysam's iron levels decrease very soon.  I agree that under the supervision of a good doctor exjade/desferal combination can work wonders.  I hope that the docs have his levels under control very soon. 

Sharmin

we have ruled out every other illness nothing
its just his body and exjade cant fight and get rid of the iron like all others
he is a dificult case as they say
thankyou all for all ur support i am going to ali taher 17 sep ill be there and i will keep u posted
yes ali taher is adult but colegge dr suzzana kusa is there so same thing i suppose
its really scarey
i hope all gose welll
im afraid its too late for him.
he looks sick dark couler and just not like him active

Mariam,

He is young and with the right treatment he will recover.  My prayers and best wishes are with you.  Take good care,

Sharmin