love-hate relationship with pump!

Hi everyone! just wanted to start off by saying i admire all of you so much for your individual gifts and specialness!  your really helping eachother on this site and that is so touching to me   it actually helps me alot to see such troopers!  cuz.........right now.......i'm not so much one myself
i dont really wanna talk about my life right now..cuz i wont even know how to start...(not to be cynical or anything..its just too involved)....but if any of you have questions PLEASE feel free to ask cuz itll actually help me more!!!
anyhow..i'm kinda struggling with issues of family/boyfriend stuff..especially with the boyfriend and the pump stuff..cuz i keep thinking how funny it would be to walk around my boyfriend with this wire coming out of my leg! HAH! (i would find myself too silly)
uhhhhhhmm...i'm thinking ALOT about how i wanna get rid of all my upsetness about thal and the pump and everything (although all my negativity comes from me believing that this can be easily cured..and seeing so many kids having to go through this still and adults in their adult life makes me furious).......
well anyway..not to get off track...i wanna get rid of all my negativity towards it and i've tried every trick in the book..from thinking people have so much more worse than me orrrr maybe its meant to be orr even i could 'go' tomorrow from an elephant stampede or something i dont know..
but its like ...loved ones can see through you you know..and i just want to learn how to deal with this for me when it comes to future family/boyfriend..cuz..i have BIG issues with vulneribilty and not knowing what to respond!
sorry for the novel..hope i made sense
p.s-this is the 1st time i'm opening up to thal patients in my entire 24 years of life!
I WISH HEALTH AND HAPPINESS FOR YOU ALLL!!

Hi Red,

to the family!

I think you should really tell your B.F everything about Thal. Hopefully he will be very supportive and you wouldn't feel any hesitation with dealing Thal. by him on your side.

If possible and available you can always switch to Exjade or Deferiprone/Ferriprox but still you should tell him about your Thal.

I hope that everything goes out well.

Wishing you all the best

Hi Red,

Welcome to the family,i know it's very hard struggling with thal, even my six years old sometimes shocks me with her questions,i feel for you 

ZAINI.

Hi Red.
Its a pleasure to read from you.this is your first step at sorting out your feeling ,you are reaching out for assistance.
Every members of this forum has been in the same or close to the same situation you are currently experiences, at some stage our lives.
Its not easy  to suffer from a chronic illness because its takes all the strength one has to keep going. Sharing your worries is one way of getting some release.
I suggest its always good to take one day at time.
 Have hope that tomorrow something better will come your way
count your blessing,minute as it may be.
sort your self by priorities your worries one by one from the most important to the inconsequential.
I suggest you do pay attention to yourself first and for most, then you will be in a better position to answer everyelse question.
"When one is drowning one need to save one life at all costs"
My concern and kindness to you,Please stay with us and continue to post with your progress
good luck and may you be bless with peace of mind and acceptance.
Kathy.

Hi Red.
Also you need to know that nobody can do anyharm to you, unless you give them the opportunity.It is said that," we continue to make the same mistake untill we learn our lesson".
We are all vulnerable  especially when we are in pain, life has many lesson to teach us.
I know you will be alright that is because you have insight of your feelings.

Kathy

Hello red and welcome to the site

Kathy, AS USUAL, you said it perfectly

Manal

AW THANKS EVERYONE! for your feelings and kind words!
i really appreciate it!  it makes me feel so much better to see how all of you are so strong and that you wont let the thal shake you down!  really, i thank you all.

i really want to (not to be repetitive) add though:
when i open up to a guy about my thal..everything changes, i can feel it. i wrote something on it awhile ago, maybe itll better express my feelings <3

October 8th 2006 (Full Moon)                                                     what i want
                                                                                                   to feel...
                                                                                                 if this is right
                                                                                             I pray for the way <3

Do you know what I do at night?  You see me bare before you yet so unkown, to which you proceed to think beyond what you know... yet is it enough for you to feel just what you want forever?  Even if I told you, what happens when we're not together?  There's a part of me that you cannot see, for that would change what you see in me.  Maybe not for reasons that are deemed vile, but surely a part of you must feel infintile, for you see there is nothing that can be done for me, I started to realize this when I was three, and even if there was pure love for me, yet never taken forgranted, surely you could understand that something in you changed when this came into your plan.  Because everything that could lead me to being seen under a sorrow-filled light, you would catch onto no matter - how much we both tried with all our might to make it right.  Finally being cheerful everyday caught up to me in the worst way, for all that I had suppressed came into my life to face me, this I confess, that then it was known to myself that there was no hiding it, not even from myself, no matter how hard I tried, that there was something that mattered.  And what it was, was not myself, but that people had changed.  Even the sound of my name wasnt the same.  At some times it was called in the most saddest way, and I cried inside wanting to know why?  Why did everyone say that they were fine when I knew it was a lie.  You want my happiness, you want my smiles?  Well, I want yours for more than awhile.  Why cant this be forgotten.... But it never can.  But I let it happen.  I can do that cant you understand that?  But see, then the reason is that this will persist.  And so there is no choice but to deal with what cant be missed.  So you see, there is no bliss with you in sharing this, for nothing will come to us but what we could have done without.  Let me be who you first saw, without the surrender so raw to arms that hold me down today, untill the unkown to my dismay.  So please dont ask why you didn't share this with me, this is my plee to thee, let me not feel as if soemthing that you felt about me changed because of something I dont want to feel when I'm with you.  Because we will never know then, eachothers true feelings.  For then there will be hidden sorrow we wont bare to share.  Not in love, not in what we want our untouched love to be.

Hi ReD!
 welcome to the website! hope you find this community helpful and educational, may you find it easy to open up more about your feelings and concern about  being a thal patient and may you find answers to all your concerns and worries about thalassemia and being a patient.... again welcome!!!!

Hi Red,
Welcome to this site,im sure you will find important info and good friends on here,
as we all have.
I can understand your deliema,i too myself growing up (and im now 28) have
gone thru similar issues.Where my previous boyfriends took it very negatively and
it does take a battering to your soul & impact on you as a person.But what i have come
to learn the older i got that people who are like that are not worth it and its there lost.
I am now married and my husband accepted me for who i was and he wasnt fazed or put off
by me having blood or the pump,and i automacticlly when i told him thought he would as that was
my previous experinces,so enough of my boring story but my point is if your bf loves you enough he
will stand by and support you emotionally & physcially with thal & the issues that come with it.
Also which country are you from? best wishes   

Hi Red,
I know that you tried everything to make it better which included acknowledging that there are people worse off than you. You are right!!! There are. Everytime something happens negatively, and I will tell you it can be frequent, I too react that way thinking whats the point...

my mother has a way of dealing with this as there are times that she would have a story on hand where someone talks about their experience and you have to believe me when I tell you that our situation is a lot better than some of the stories I have read.

I also believe that relationships are best built on trust and honesty and if the persons cannot deal with our situation then they were just not good enough in the first place. I think that it is worse to actually get to know and feel for someone and then to be shunned for something you have no control over!

With regards to the pump, I have been using combination therapy for the alst four years- ferriprox and desferal- and my levels are almost normal now (would have been sooner but I also fell off the wagon a couple of times). I expect to be taken off the desferal soon though and would only be on  ferriprox, so I am sure that you would agree that its something to look forward to.

While there are other options available, this was my choice as it seemed to be the best option, so I dont know what country you're from but you should also do your research.
Keep your chin up though, we are after all a SPECIAL group.

God Bless

Hi Red,

That was really touching,i know it's very hard to live with a chronic illness,sometimes i think about my daughter's future,and i feel like i am not sure what will she do or what would i do for her,but other friends said it right, if your boy friend loves you enough he'll stand with you and accept you as you are, otherwise he is not good for you in the first place.

ZAINI.

Red, that was very moving. Thank you.

Red:

Thank you for your post because it really helps me as a parent to understand the emotions that my daughters may feel as they get older.  I know it is not all going to be rosy and I am glad to be more prepared by hearing from people who have grown up with Thal.

I have to thank YOU all once again for even accepting me!  I only hope to shed some light on anything for anyone!  Aside from all the 'negativity' I do feel that deep in a thal's soul is not really thal..thal's just a physical attribute like noses and organs...I feel we are all connected with our souls anyway..and that puts all ailments aside ..so for all you awsome mom's out there of thal kids..just know that your son's or daughter's will know the value of every human and that will be one of their best attributes 
I'm from the U.S