Thalassemia Patients and Friends
Discussion Forums => Living with Thalassemia => Topic started by: Annie on June 12, 2008, 06:29:55 PM
-
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.. :cloud9 :cloud9
-
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 :rotfl she's scared i'll be left on the shelf :rotfl
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 :hugfriend
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.
:biggrin :biggrin :biggrin :biggrin :biggrin :biggrin :biggrin :biggrin :biggrin :biggrin :biggrin :biggrin
-
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 :hugfriend :flowers
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 :cheer
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 :teehee
Wishing you all the best for your health. :getwell
-
Hi Anie,
:hithere
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. :wah its like im a bomb waiting to explode.. :mad 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 :wink
-
Hi carmi13 :
how ru ?.. well your will not feel helpless anymore .. you are on right place to get help about understanding thalassemia ... WELCOME :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 :thumbsup
Best Regards
Take Care
-
Welcome to the site Carmi! just ask away you question feel at home and are here to answer your questions and be of help when you need support.... :hugfriend :biggrin :wink
-
Hi Carmi,
There is no reason at all for you to think that you can never have romance in your life. Being thal minor won't keep you getting married, in fact many majors have married and even had children. Minors really only need to make sure their mate is tested for thal before having kids, so you can be aware of the risks. There are literally hundreds of millions of thal minors on earth and most of them are unaware that they carry the thal gene and most of them find romance in their lives, and you can too. :heartred
-
Hi friend,
hw ru all?m fyn
thanx for reading my posts.
ya its true that sometimes i feel so hopeless but m not going to give up.
thanx a lot for ur support actually I m not affraid of my thala n physical pain.bt what about mental pain.it hurts more,you know what i m saying.right?
but thank God i found this site
now i can share my feelings with my friends.
plz be in touch.
bye bye
take care
-
hi there nice friend,
everyone here has been nice to me and giving me good information.. its just that as i go through all of the post i feel that there is more reason not to worry.. this diease or state as i may call it is managable....right?!!!!!
thanks you so much
-
Yes, it's totally manageable and with thal minor(Thal minima) all you need to do is stay happy and have a healthy lifestyle.
:thumbsup
-
dear andy, :hugfriend :hugfriend
the first 2nd reason that I criend when i was diagnosed for thal minor was I may n ot have kids..I grew up with 4 siblings and to some none will be haert breaking...But to read stories of other thal minors who concieved...my heart leaped for the chance I will have...
in the philippines I'm sure genetic counceling is present but not very popular but i bet i surely need it ...
im a little bit ashame to post anything here to say what im going through as compare to those with the major type... they are suffering I am not.... needles piercing my skin once in a while is no compared to kids helpless cries and parents endless prayers for their love ones...but everyone seems to be accomodating and nice to me here....
I just cant help to thank you all :wink :wink :wink :wink :wink :wink
bless you andy and the rest of my new found angels.....
alll of you are contributing in my acceptance and understanding :wink
-
Dear Carmi,
Thalassemia should not limit your ability to have children at all! You only need genetic councelling if you want to have a child with another thal.
My mom is a thal minor and she had 3 children. One of your parents is thal minor and they had 4 children! I am thal minor and I had a baby boy soon after my first anniversary! :biggrin Thal minor will not affect your ability to conceive children.
My husband was a tri athlete and played on every sports team you could imagine. We only found out he had thal minor in a blood test when we were going to have my son. Thal minor had never affected him before and it has not affected him since.
Nor has he ever had an ache or pain (thank god!!!). In fact, thal does not have any significance in our life other than how it affects our son.
I am glad that you are asking these questions, I hope we are reassuring you that you are okay and that you really don't have a disease to manage. The slight anemia, which some women have anyway can be helped with supplements; and having a good diet & excercise will keep you energized.
Please feel free to ask anything that may concern you,
Sharmin :hugfriend
-
Dear Carmi, your questions are just as important as anyone else's. We all have varying degrees of problems and they are all important. Good for you for being proactive and trying to find information, if anything you will get reassurance.
Thalassemia is prevalent in certain parts of the world, thought to be preventative against malaria. In it's minor form thalassemia is usually quite harmless. My son is thal major, which has been a battle for us. My daughter on the other hand does not have any thal at all, but it would not have concerned me at all if she had thal minor because I consider someone with thal minor to be healthy. I hope this helps you:)
Remember every question and concern is important - if it is making you sad and depressed you are better off talking to us about it so we can address your concerns:)
I have posted messages, whining and crying because my son's iron was 2800 (as it was in June). There are others here who have ferritin levels of 10, 000. Unfortunately, there are people who do not have the same access to medical care as my son does and they are in much more difficult situations - but these same people still listen to me and offer me support when I go through what I consider to be a hard time.
My hope is that we can help all of our friends receive as much care and advice as possible wherever they may be. One possible way that we can all make a difference is by purchasing the Pat Girondi's CD (only $13) and encouraging everyone we know to do so. Also, we can contribute to thalassemia charities in different parts of the world so that people there can get better care.
We are all here to help each other:)
Sharmin :hugfriend
-
Hi Carmie,
Excessive bruising is usually a sign of vitamin C deficiency. Thal minors can take C freely, so you might want to try a supplement. I would suggest at least 1000 mg (1 gram) twice daily. C washes from the system quickly so it needs to be replenished frequently. I take 6 grams daily in two doses. When I travel and forget my vitamin C, I start getting bruises all over my legs.
-
Hi Carmi :
hi there nice friend,
everyone here has been nice to me and giving me good information.. its just that as i go through all of the post i feel that there is more reason not to worry.. this diease or state as i may call it is managable....right?!!!!!
absolutely right ! ... its very true that this diseas is manageable .... even thalassemia maj is manageale as well .... All you have to do is, good care of your self , and you may live a normal life , good care, that is wat every normal person also have to do , otherwise he/she may suffer to sickness ... its nothing new ...
i m a thal major , i suffered a bit when i wasn't interested to take care of my self .. but when i start caring my self i m back in the life again you can witness the change in my posts .. and my pic as well ( galllery ).... one of this site member told me that i dont look like a thal .... ( if you forget about my age for a while :grin ) .....
http://www.simplymarry.com/marry-zine/body-soul/article4.html
Thalassemia Minor is not a disease. Over four crore people in India are diagnosed with this form, but they enjoy a normal and happy life. According to sources, Amitabh Bachchan, Amisha Patel, Zinedine Zidane and Pete Sampras have been known to be diagnosed with it. So, you can jump, hop, dance, kick and smash without any hue and cry
soo .. you're 100% normal , you have to take good care of your self and you will live normal life ...
concentrate on andy's advice .....
As Andy mentioned said ....
Andy There are literally hundreds of millions of thal minors on earth and most of them are unaware that they carry the thal gene
Best Regards
Take Care
-
Hey Carmi,
It is so manageable! Just as long as you are compliant and always take the advice of your hema :wink & you will never go wrong. :hugfriend
-
Hey carmi,
welcome..
I m also a new member..but i feel very comfortable with these people.
feel free to share with us
i m thala major and still i think i can do every thing..
i blv that dont give up before try..
ya sometimes i feel very bad too as i said before but this is a part of life.
so dont worry and n joy your life be poitive and be in touch
God bles you
-
Hi anie , thals do get married I had more than four proposals but I wanted to finish my education first so no worries dear :wink you'll have a special someone one its the right person on the right time :biggrin
-
Thanx Maryoom..
-
you're most welcome :biggrin
-
Hie Annie!!!!!!!
Like others, my msg would start by saying yes we have encountered few cases where thals are getting married...........but its true also that not all thals get married at right age.........I, myself had faced two break ups in recent times.......just because they were unable to convince their parents that i am thal major and they can stand by me in future...........as caring partner. They asked me to back out from relationship.........same thing happening to me twice within short span of one year once broke me so badly that i could hardly digest my food..........i lost 10kgs of my weight during two months...........then i analysed that during the search of perfect partner the only person who got hurt was me............i collected my self.........and now i am again most happy person.........though sometimes i feel need of a partner specially wen i move out socially and all my friends are married and they accompany with their spouses, it feels bad..........but i am a happier person now..........coz i have good freinds around me. Rest left on GOD.....
I just pray to GOD as I trust this unseen force so much that u and other friends get their perfect partners.
-
Neeti, that is a wonderful attitude you have adopted. By the way, I hope you know who I am, as we first met in Dubai.
-
Hie Andy!!!!!!
Yup I certainly remeber you, You were introduced to me by Shilpa (form Pune).........but I am amazed to see your rememberance power..........aur its my aura that i have left strong impact on every body :winkblue. Its been quite long i was out of touch from thal.........and thal group. Got myself involved so much with my professional life and also personal life.......but was always wanted to interact with most imp counter part of my life...........
-
Hi Neeti,
Is Pranav your brother?
-
Hello Neeti,
thanx for the post..you are a brave Girl i must say..
you are right why should we worry about it.GOD is thinking for us
i just try to avoid to think about it, but as you said sometimes it feels bad.
newaz i try to be more busy to avoid some stupid thoughts..
Thank you so much..
can i ask where are you from?
-
Dear Anie.........
Most of the brave people are from India..........I am one of them
Dear Andy........
Pranav is no one near related to me..............
-
I Agree Neeti,
m also from India..
where do you live in India?
-
i am in delhi..........wat abt u?
-
hi neeti
m from Rajasthan..
-
Hi Annie ,
is it the same Rajasthan about what Shah-rukh said in his movie that , " hum rajasthan kay betay hein narang , hum ko nahi lagta..a.a....a.a...a.aaa.... " when narang was beating him on top floor of the hotel of narang. just before the end of the movie ??... hehhehe :biggrin :rotfl :rotfl
( :grin Just :grin kidding :grin )... :biggrin
Take Care
Umair
-
Hello Umair,
hw ru doing?
I don't know the movie you talking about..
anywaz what is your ferritin level now?
-
Annie ,
Well !.... the movie name is " Chahat " , which were a superhit movie , ... hahaha :rotfl
according to my last ferritin report the level was 3600 but i dont think that results was acucurate bcoze i was having fever at the time i gave blood sample to lab ... soo, :dunno .. in report of my 2nd last S.F test which was done 2 months before my last ferritin my S.F was 2902ng ... to my last ferritin test i m complied with my chelation plan which is , 3 vials of desferal 500mg twice or thrice a week ( my doc reduced the desferal therapy plan to 5 days a week to 2-3 days a week )... and ferriprox 8 a day ... here is a thread in which you can see my progress abt chelation ... its a lil long thread but , i hope you will like to read it completely to get the complete pic of progress :grin ....
http://www.thalassemiapatientsandfriends.com/index.php?topic=1689.0
Best Regards
Take Care
Umair
-
hi annie i am new to this forum and i am also thal major. one of my thal friend also had the bad time like you but he was lucky that some of his friends were there to help him out although none of them were thal major but they still were able to under stand him.what i have assesed iz that its just your begining and you can get out of it if you have yourself surrounded by some good friends and dont let your self bother by other matter sooner or later you would find your life partner