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

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.

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.

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.

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?

Ambareen,

I am new to this message board and I have never spoke to you before but my heart goes out to you.

I don't know what it is like to lose a sibling and I am terrified that there will be a day when I have to find out. My 15 year old brother is living with type 1 diabetes and I was employeed with the American Diabetes Association for 2 years. If there are any questions you have about diabetes I have a lot of resources and Endocrine's that I ask questions of all the time for my family.

Diabetes can really mess with your hormones and could very well be a part of your depression. 280 is a very high bg to have for an extended period of time.  Are you on an insulin therapy? What type of insulin are you using?

Andy mentioned that you may be able to reduce the steroids that you are using...steroid use can cause hyperglycemia so if you there is a possible way to reduce your steroid use you may be able to help bring down your blood glucose also.

I had to leave the American Diabetes Association for some of the same reasons you have had to move away from your involvement in the Thal Center. I found that I care so much about people with diabetes and I want so badly for them to be healthy and happy that I felt I could never get a good grip on all that needed to be done. Still being away has been just as hard! 

I hope things get better for you and if there is anything I can do to help I would love to!

Ambareen, i totally agree with Andy that inside you you don't want to give up and i am sure you won't too. Remember your brother and how he will be happy seeing you a strong person.  From time to time all of us pass through those depression phases, but hope is the only thing that gets us back to track again and sometimes the many problems at atime defeat us,.. so i suggest you start with only one at a time. Start with changing the endocrinologist and see what he can offer to control the diabits . After this i am sure you will feel much better.

Reading your previous posts always gave me strength so please remember that knowing that your are fine and well is so imprtant to us all.

And truly from my heart Ambareen we are all much (with the severe complications any of us suffer)  better than many people suffering from other diseases.

Ambareen, i believe that one's will can do miracles, am i right Ambareen?

Please know that we are all always here for you anytime

Much love to you
Manal

Ambareen,

Reading your post left me speechless,still i felt like i want to say something,though i am not sure what that something would be,i can't say that i understand your condition,coz i do understand it in words, but i am not really going through it,but believe me whenever i look at people like you,you grown up thals ,i feel hopeful for my daughter,bcoz i know that i always say that thal is not a fatal disease and it's a mnageable disorder and blah blah blah,but deep down i know, that if something will go wrong ,(GOD FORBID) i won't be able to reverse it,like everytime my daughter recieves her transfusion,i wonder if the blood is screened enough not to pass her any disease,she is getting her transfusions from the most authentic hospital in the city,but you can't fight fate,so what should i do? you tell me, help me here plz,should i stop doing everything which is currently with in my reach? should i consider my daughter a hopeless case? i don't think your answer would be yes to this question.

I know you've been through a lot,fighting for every day of your life must be tiresome,i can't even imagin your problems,but let me assure you,i am a mother of a thal patient,and you know what's special about parents,they always see,want to see everything for their kids in the positive perspective,they never loose hope,so just think about your parents,what would they feel if they'll know that you are loosing hope.

I am sure you must have heard that Hadith " Dua is a momin's weapon".I know it's hard to seek solace even in religion when you are depressed,but i've found that eventually it helps you.

You'll always be in my prayers,i request you not to loose hope.

ZAINI.

Dear Ambareen,
Yes life can be hard and at times and we do feel that we can't cope anymore,because our pain is so much to bare,It is good that you are able to share your feelings with us ,that in it's own, is a way of copping.you are always welcome because we all hurt sometimes
Tomorrow is another day as long as you are breathing, dont lose hope.believe that there must be a better outcome for your already fragile health,
I am sad to hear that you are currently having a terrible time,we are all pulling together for you and that doesnt seem much but it has to be of some comfort to you.
best of luck my friend and may our prayers see you through your worries .
with love from Kathy.

Ambareen, please look at this post at http://www.thalassemiapatientsandfriends.com/index.php?topic=1184.0  The study quoted in the post was done in the UAE.

If you are not getting adequate amounts of vitamin D your body cannot absorb enough calcium to maintain your bones. Vitamin D deficiency can also cause depression. If you are not already taking a high dose of vitamin D daily, show the study to your doctors and ask if they will prescribe high dose vitamin D2 for you.

Ambareen, I hope that brighter days are ahead for you.  Only you can understand what you are going through, I hope you find the strength and will to get through this seemingly impossible situation.  I send my love and prayers to get you through this situation when you feel too exhausted to pray and go on - I know that the prayers of your friends here will help you get through this.

Love,
Sharmin

Hi,  Ambreen has written something that would crush the heart of any parent. Firstly I would say to you that all our prayers are with you to help you in this phase of life. I am not good at giving out advice but I will do so here – because I think people like me need to reassure themselves that what they believe is right? every now and then.

    Hope, is all we humans have. First thing that I learned at a very young age was this. It was something that time didn’t teach me easily. I lost my mom at a very young age , I can totally feel how you feel- my world came crashing down too. I didn’t knew what to do, who to talk to as I belong to a very conservative family-  I blamed God for this, thought about killing myself too .  But that wasn’t enough – there was something missing…  I Sat down - thought about what was the most important thing in my life – I was surprised to realize that it was a Hope to see my mom again, to fall asleep in her lap again- talk to her…. So started thinking what was necessary to do that. I found closure in religion- other wise there is nothing available on which you can believe and hope to see your loved ones again.  What would we do if there is no religion to support your thought that one day if you are righteous , you would see your loved ones and stay with them forever.  Such a beautiful thought.

    It was difficult for me to believe on this in the start as I was a so so believer of God. But as time passed I realized this was the only thread  (hope) that I was hanging on to.  God is infact someone that gave us this life and frankly speaking we people who live In a better place of the world as compared to people in war torn countries like Somalia and Palestine take our lives for granted. I know I used to do this when I was living in UAE , spent 20 years of my life there. I know the artificial life that exists there the routine makes you believe that everyone will live for ever. Do you know that the water we flush down the drain in a day is the amount that a Somalian kid gets to drink for a month.

    My sister we all are nothing but humans and mortal ones. There are a lot many kids who didn’t even see the world and die. You and me should be thankful that we have been given a chance to know why we are here – to know our creator, to know that creator of this balanced life of the universe is just in his decisions and has put everything in its place for a reason. just as you and me have a reason to live.

   You guys are what we see our kids tomorrow. You have a greater responsibility on your selves. What you say, is what our children will say tomorrow. You will have to live for all the parents, for your parents who have such miracles in their laps and hope that one day they will be living their lives normally.

  Please, understand your place in this life and hope that everything will turn out fine. It always does…. It requires great courage to speak about your problems it takes a lesserr amount to follow the right path. May God guide you and all of us in this test of life.


 I hope , I haven’t offended you in anyway. Take a lot of care – do what andy is telling you , his advices always work. And live happy and contented with what you get. What you don’t – you will.   

Hi and Salaam to all you so so so kaind ppl,

  I really dont know where to start, when i read all the replies that i got for my letter i couldnt stop crying and i still am with tears of happiness, you all are so nice i felt like i was..... i dont know what to say i just cant find words,
  Sometimes i find myself standing all alone in the dark and no one to reach to, but all you ppl are like that light in the darkness, im feel so lucky to have you as my friends whom i can open up to in the time of ...... i dont know how to thank you all.
  I will surely talk to the doctors able my insuine and about the vitamin D, Thanks a lot Andy all all of you for taking out your so praicious times for being there for me.
  I will surely let all of you know about me when i completely come out of it, Im really not that kind of a person to get depressed about something, specially regarding thalassemia, i always used to be the one who would say to this positive in life and look at the brighter side, i still am so surprised by the way i was feeling.... insha allah hu taala i will recover i try my best to never give up....

Who said that death will be better?

What about the little boy with no hands or legs and cancer all over the body? Should he give up 2?

I know you, and I know that you know that this is only a stage in life.

If there is no rain, how would you then appriciate the sun?

Giving up/Dying never helped anyone, so start fighting soldier!

Dont make me come to Dubai and yell at you

Ambreen,

  I will surely let all of you know about me when i completely come out of it, Im really not that kind of a person to get depressed about something, specially regarding thalassemia, i always used to be the one who would say to this positive in life and look at the brighter side, i still am so surprised by the way i was feeling.... insha allah hu taala i will recover i try my best to never give up....

I saw your latest post and very happy that you are coming over those feelings. We all have a share of good and bad feelings in our lifetime so don't be surprised. Looking at your post I realized you are an optimist, all you need is a little encouragement and help.

Please keep us in the loop because you are among friends.

Regards.