Discussion Forums > Thalassemia Major

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

(1/21) > >>

Ambareen:
Hi and salaam......
     I used to work at the Thalassemia Centre for quite a long time,but i had to quit it for some reason, i was a very positive  thinker always hoping for the best, and fighting to keep myself to be in the best of my health, but now i feel as if whatever i do is always felt as not enough, what ever i do is not good enough even when i work very very hard to really make it work well, without wishing for anything in return but just make someone happy or bring smiles over their faces, I guess giving away smiles have made my hands left out with nothing at all in the end, I never lost hope in myself even when i lost my beloved brother Mohd Affan from heart failure. But now i feel as though i am also gonna seal on the same boat as he had a year ago, As soon as he passed away i got diebatics my ferittin is going high now adays even when im so regular with my medication, when mine was the lowest of all in the centre in the seniors group with only 400, now i have the weakest of bones and the doctors have told me not to lift anything nor walk for long, n to take extra extra extra care about my bones as i have developed ostioporosis since i have been taking steriods for a very long time as 12 years, my sugar level is always high (minimum being 280) even when i control my diet alot and stay depressed all the time and i just dont feel like a normal person any more, im feel really fed up of ppl telling me how sick or weak i am all the time, and making me fel like a handicaped so i  thought of giving my life up so many times, and i know that is not a good thing to do at all, So i thought why dont i go for bone marrow so that i can have a  normal life with no thalassemia or have no life at all instead of ppl killing me with slow poison all the time by telling me such thing day and out.

    I have also taken up some classes so that it could help me forget things but even that isnt helping me, i feel as if i have no place to go to any more and no one with me to whom i can talk to as a friend. I had never felt so broken as i feel rite now

howard:
Hi Ambareen,

I could understand how you are feeling at this moment. Everyone of us here is going through a long battle and I could even say a battle till our last breathe.

I have been living with Thal major for the past 30+ yrs and is also a diabetic myself for the past 10yrs. Sometimes i was wondering when can I actually relax and feel like a normal person but I dont think I'll live to that stage.

Some friends actually told me they are debt-ridden, poor etc? But at times I wish I could exchange my life to be theirs and live healthy but poor. I told them that for you people with such setbacks you can easily work hard and gain new life but for people like myself my battle will only cease when the day I lie on my coffin.

I been through a period where my sugar was unable to control high and low anytime of the day and I was in coma for quite a few times. Luckily my doctor managed to get another new drugs to replace my existing insulin which help me a great deal. I believe the current depressing mood that you had is greatly due to your sugar control. I would strongly suggest that you consult your diabetic or endrocine doc to get it treated well.

I don't deny the fact that our life is really a battle but I felt having gone through all these have help me to mature and more sensible in life and how a single life is so precious. My motto has always been Make the best out of my life.

I greatly encourage you to carry on the battle and dealt it carefully, even though we cant lead a normal life throughout but we can at time lead a life better than others.

§ãJ¡Ð ساجد:
Hi Ambreen,

I can't believe I am reading this posted from a senior member who everyone (including me) looks up to. Andy talks about your efforts and service to all Thals. and that has inspired me too. I myself try to offer my services to my Thal. center whether it is making funny faces for the kids during the needle fixing or doing something on the computer or taking part in the blood camps. I just want them to serve Thals. in the best possible way they can and I can be a part of it.

It is in the tough times that tests us the most. You have to feel strong to be strong. Please don't give up hope. Always give your best.

Andy Battaglia:
Ambareen,

It saddens me greatly to read about the problems you are having. I have to agree with Howard that the depression may be hormonal in origin and related to your diabetes. I think you should follow Howard's advice about talking to you doctor about changing your diabetes meds. I would also suggest trying the supplement, IP6 (phytic acid) as it has shown some ability to lower blood glucose levels, in addition to being a natural iron chelator that can supplement your iron chelator. You mentioned the long term steroid use affecting your bones. Are you on the steroids because of antibody reactions in your blood? If so, it may be possible to moderate the way you are taking the steroid to reduce the dose. I would also like to know what you are taking for your bones. Are you on any meds? Are you taking calcium along with vitamin D? A study I saw recently showed that the vast majority of women who cover, have vitamin D deficiencies even when they live in hot sunny climates, because their skin gets so little exposure to sunlight. Please make sure you are taking a minimum of 1000 iu of D each day. Vitamin D deficiency will add to depression (this is something I constantly battle in my cold northern climate. I have had serious bouts of depression in the past but these have been greatly reduced by taking 1000 iu D daily during the cold months).

Ambareen, you are one of my favorite people and I hope you can count me as your friend. Seeing you and your family is a must every time I travel through Dubai, and I know your parents and sisters love you dearly. I too, have had a hard time reconciling the sudden loss of Affan, and often think about talking to him in your home. At times I can't believe that he is really gone, but I know he would never accept you giving up. You know deep down that this is not you. It is the voice of depression speaking and you must find your way out of this depression, that I am sure is medical in its causes. Please remind yourself of how you have been and the beautiful spirit that is inside you and inspires you to be such a creative artist. Every day I look at the painting you gave me and smile when I think of this lovely young woman that God has blessed with such talent.

Ambareen, I hope you will remember that I am your friend and that I am here anytime you want to talk about anything. I have missed seeing you online and hope to see you on MSN again soon. I talk to your sis frequently and she knows I'm her buddy. I hope you do too. I am hoping so much that I can find myself in Dubai at some point this year and will expect to see you and your family when I am there. Please don't give up. I think we can get some more input from the older thals about how to deal with your physical problems. Your reaching out here shows that inside you don't want to give up and that you do want to find help. You are a beautiful woman with a creative soul and you have been given an artistic gift to share with others. I feel blessed to know you.

red:
hi!
i know i dont know you..
but i just want to say,
i know what you're going through..
and just know..
that you have an emotional connection
with someone in another land,
far away..
and that should mean something, right?
:wub

Navigation

[0] Message Index

[#] Next page