Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: red on December 06, 2007, 08:29:22 AM
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Hi everyone!
So......does anyone have a pump that is NOT the size of a toaster?
seriously...first i got this steel box that totally freaked me out, although soon i came to regard it as my friend alien.
then..just when we had formed this close friendship..they take alien away from me..
and made this big deal about this "new and improved pump" that i was gonna have...
it was a little smaller than alien, well it was alot lighter than alien..
but no matter how hard i tried to make friends with it..new and improved pump was like a favored child..totally unaware to my existence yet wanting my attention whenever it deemed!
n. & i. pump was kinda prissy too..
anyway....i couldnt keep up with this high maintenance attitude..no sir..not while on my skin tissue!...
and sure enough..n. & i. pump took revenge, and made sure that i was completely aware of its existence all the time. ...
i fell through..
i had now looked at new and improved pump like a tag -along younger sibling..i cared about it..if anyone messed with n & i. they messed with me!
but i knew..that in the end if it was a choice between diamonds or me.. n. & i. would choose the diamonds...
and for that reason....
I NEED A NEW PUMP GUYS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
i want a small pump like a little mouse, so it can be my little mouse friend and i can carry it around everywhere!
i'll name it Algernon!
aww..yeah..Algernon!
so if anyone knows how i can get Algernon, please let me know!
i've talked to my med.provider and hosp.staff and they are all so oblivious its soo annoying!
i know you guys will throw some good suggestions at me!
THANKS AGAIN FRIENDS!
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Sorry red i am not familiar with pumps, but just want to tell you that i really love your sense of humor :rotfl
Manal
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Hi Manal! THANKS!
always here to get a laugh outta ya!
:party
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Hi Red,
Have you ever tried those Chrono pumps?
It is small and you can hide it into your pocket.
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yay!
i just looked up the chrono pump and i think i'm going to order it!
FINALLY!!!!!!!!!!!!!!!!!!!!!!!
:yahoo :woot :boogie :clap :veil :heartpink :jumping :pray :letsgo :shh :wave :party :sweetdreams
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Oops,
Sorry, I forgot to paste the link http://www.intrapump.com/ambulatory/index.htm (http://www.intrapump.com/ambulatory/index.htm)
They also supply the syringes for it if you can't find them locally.
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Sajid! i cant even describe how great of you it is to help me with all this!
wow, for real..people need to know how lucky they are
to have a friend like you.
:happyyes
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Gee thanks :blush
I'm nothing compared to other knowlegable people on the site. Hats off to each and every member.
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have you looked at some of the companies that make insulin pumps - medtronic minimed, animas, kozmo etc... I know medtronic minimed is developing pumps for MS so they might be developing them to deliver other meds too. Just a thought.
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Red, your post had me cracking up. :rotfl
I own a Crono pump, and I love it. I've had the other "alien-like" pumps and this one (Crono) is the best by far. :happyyes
I'm nothing compared to other knowlegable people on the site.
Sajid, you are extremely intelligent and we are very lucky to have you here with us! :hugfriend
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:grin
Thanks; feels great to be a part of this family :grouphug
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:smileblue :smileblue
Indeed we have a very close relation building between us.
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Hi sajid!
Chrono pumps (ThalSet) looks like a really nice deal... do we get this in pakistan?? or is it to be ordered from the site?? By the way can you recommend the best pump in pakistan.. i read it a year ago from one of your posts but i couldn't find it again... will appreciate if you can guide me again on what kind of pump should i buy for my 2 year old and another thing i might be needing..
Thanks
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Hello Mr. Tariq,
ThalaSet are the thumbtack type needles that can be used with any syringe instead of the traditional butterflies. The Crono Pumps are small infusion pumps which uses a special type of syringe. You will have to order these from the site or somewhere else like U.S or U.K. Crono will prove expensive as you can't buy the syringe that it uses from the local market.
I suggest you get a standard pump from Jamila Sultana Foundation. They got a shipment of new pumps a few weeks back.
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Thanks again... thalset was something really nice though (if we can get it here) :rolleyes
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I think ThalaSet needles were available through the Thal. center that was once at Liaquat Abad. I don't know much about them but Asim told me that they were available for a short time and were pretty expensive. :-\
If you know it's current location then maybe you can contact them and ask if they are still available.
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@mrtariqkhan hello thalaset is availiblle is pakistan and in rwp they can be bought from thalassemia center and i used them but only for 3-4days because i couldn't afford to buy them on a regular basis or for even a month because they were VERY expensive they cost 250rs (for each butterfly) so i only got them for trying them out and believe me those are the best butterfly's i ever had i called them "magic butterfly's" as they didn't gave pain and didn't irritated or swelled my skin and no irritating skin rashes i just wish they were cheaper and in normal butterfly price :wah
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Dear Asim_aziz,
I have a request for you. Please do not use the photo with "tied for life". Even though it is true that my daughter and all Thal majors, including you have to have the transfusion every month to live, the picture makes the reality too harsh to cope with. I am soo disturbed and feeling extremely depressed seeing the photo. Please use an encouraging picture or anything that gives strength not depression.
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Hi Hope,
I aplaude :clap, your honesty, you are right we don't need graphic that reminds us of the negative side of being affected with this blood disorder, we all ,already live with it .
We need to take into consideration of children that visit our forum. message of hope and encouragement, is much better,to empower ourselves and our youth,
I'm certain that Asim_aziz didnot think of the implication that , this photo might have on others.
Please ,kindly, change the pic ture ,thank-you ,sometimes the reality is too harsh.
I do not like it either.
:tantrum :tantrum :tantrum :tantrum :tantrum :tantrum :tantrum :tantrum( Laugh out loud)
Concern
Kathy
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I know Asim personally. He is really a nice kid, optimistically bold as he loves to ride around with his Diesel addicted buddies. He is very helpful and supportive! I can assure you that :biggrin as he is the one who guided me to JSF that provided me an opportunity to live a better life. Had it not been for Asim I would have been in serious health issues!
Asim is going through a hard time and is struggling with his Hb. and Platelets. He is suffering the consequences of Thal. and probably the picture is depicting his current state of mind w.r.t his health and hopefully he doesn't mean this for everyone else.
Asim, Bro! I wish you get well soon and be back to the lively self that you were. We need Spidey back! Ups and down are a part of life. Please cheer up.
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hi Sajid ,
I'm sorry, if I came across incensitive towards your good friend ,Especially when he is not doing so well currently.
I can amphatize with him ,because, I, myself, at times do silly thing without thinking, that is because at these particular times , I'm incapable of thinking rationally.
again i'm sorry for jumpimg head first which can be damaging,
I hope azim get better soon.
Kathy
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Hi Kathy,
Don't worry a bit. He's just going through a phase and does not mean it for everyone else. I know I was upset a lot during my "Down days"
I had a chat with him yesterday and he was refusing to go to a doctor just because she tells him to do something that he thinks, he can't manage; although he can.
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Hey Asim,
I hope you are doing well,my prayers are with you. :hugfriend
ZAINI.
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Get well Soon Asim.
You are in my prayer.
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I realize that the tied for life may offend some people but it has long been the symbol of the UK thalassemia society. http://www.ukts.org/
I admit when I first saw one of my thal friends use that pic on MSN, that I was a bit shocked, but knowing thals and what they endure, I will not criticize anyone who feels tied for life. It has been the stark reality for thals and I await the day when no thal is tied to transfusions to survive. That day is coming. It is no longer if, but when.
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@hope and Kathy i have removed the pic theres no need to get offended or emotional :yum and please do check what andy said thanks. @canadian_familly, sajid and zaini thank you for your wishes @andy and sajid thank you for clearing that out for me @all i am very sorry if the pic offended anyone or hurt anyone
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dear asim_aziz,
I hope you feel better soon. I was not offended by the pic but became very emotional and could not handle the reality it depicts. So, I requested you to take it down. So Thank you for listening to me. As Andy said, I am eagrley waiting and praying for the day when Thal patients will no longer need transfusion to survive. I want it to happen in my daughter's lifetime. That is my prayer and hope.
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Hi Asim-aziz.
Rest asure that I was not offended and I dont waste my emotion on none important thing, like a little picture.
However I do get annoyed when I get redicule with sarcastism and innuendoes .At times people can be very mean in a subtle way.
Thank-you for taking the picture down ,I hope you do get better soon.
Kathy
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Sigh. I have read these posts a dozen times trying to find any ridicule or sarcasm and have found none. Asim's display pic was one of the most recognized symbols of thalassemia in the world and I am sorry he felt pressured to remove it. I doubt the UK thalassemia society would be so quick to remove this pic from their main page.
Thal is tough and the patients are the ones who have to live with it each day of their life. Imagine being under 5 feet tall and weighing 90 pounds and having a body that just can't tolerate more than one unit of blood at a time, as many of my Maldivian friends experience in life. Weekly transfusions are often required and the feeling of being "tied for life" is very real for them. As Shilpa as said in words that cannot make it any clearer to me, "a thal never knows what it is to live a single day not being a thal." Until you can walk a mile in their shoes, please try to understand the reality that thal is for those who live every single day of their life as transfusion-dependent, iron-chelating individuals, with a host of health issues. I have spent years talking with thals all over the world so that I can better empathize with their lives but I cannot put myself in their shoes and feel we should always do our best to accept how they feel, without criticism.
I also understand that there are communication barriers here with all the different languages that they speak and I hope all will try to understand that some terms and characterizations may be used that inadvertently offend another. Please realize that there is not usually a bad intent.
Hope, I understand the proverb, but it does infer that some of our members are acting as scavenging flies, and I am absolutely sure that it is not what you intended to infer. You are a very good mom who is trying very hard to do the best for your child and I hope we can help you find the constant strength to deal with the harsh realities of thal. I am hoping we can get someone from the UK thal society to give their perspective on why this pic is used on their main page.
Everyone, please give the benefit of the doubt when interpreting what you read here. I don't see any ill intent in a single post in this thread and am sure none has been intended. And furthermore, I feel that it has distracted people from the fact that Asim is facing some serious issues and can use our support.
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Andy,
Thanks for your post and making me understand that it may infer something which I did not intend to say. So, I deleted the post.
Let's all gather togather to help Asim_aziz in his fight against the health issues he is facing.
Asim_aziz, I want to see you well, healthy and happy....
This is a prayer from a mom...
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So I tracked down Chris, who is a member of our group and also active in UKTS to get a little perspective. As it turns out, Chris took this photo years ago and helped design the poster. This is what Chris had to say
its message is clear we r tied for life and untill someone or something frees us from being tied then the message remains ageless
I hope that I can help change the connotation of this pic in people's minds. Chris is a thal major. Chris will turn 50 this summer. Chris is in good health and has been an inspiration especially to the Maldivian kids who didn't believe any thal could survive to even 30. I will never again look at this pic without thinking of my buddy, Chris, and what a testament he is to what can be accomplished with full compliance. What I see in "tied for life" is hope, for it has been this tied relationship that has given thals life.
How you view things in life goes a long way to deciding your own perspective. View compliance as what can give one a normal life and not as a harsh reminder. Because of transfusions and chelation, thalassemia has become the only genetic illness where huge gains have been made and even more huge gains are coming. As harsh as the reality of thal is, it is what gives thals life and hope and when I see compliant thals marrying and having kids, having careers and even going to medical school, I see a reality that offers true hope. Parents, please realize that you have much more help with your kids than Chris' parents did when he was a child. Your own attitude will be a key factor in your children's view of their lives. Make it a positive, hopeful attitude with a view that your children should not find limits in life, but should reach for the sky and become everything they can be. Your reaction to your child's thal and how you deal with it is so important. It's very difficult to be a parent of a thal but how you react can make so much difference to your children. Listen to what Miaki has said about how her mom raised her and the great perspective it gave to Miaki who has never let anything hold her back in life.
I hope each parent can see that the way they handle thal will make a big difference to their children's future. Look inside and find the strength you will need to give your children a good life. Look to our group for support and information. Look to your children as the future.
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Very well said Andy :yes :yes as always
I always tell my daughter that only sky is the limit,thal or no thal you can achieve every goal through determination and hard work.
But one thing more important is parent's support,i am a thal minor,about which i didn't know until my daughter was diagnosed,it was my dream to become a doctor since my childhood,but my parents never let me,they had their own views and they imposed theirs on mine,my point is you are thal or no thal whatever you do in your life your parents support is also very crucial,so plz let your kids do whatever they want to do,whatever they wanna become in their life, be there for them.
ZAINI.
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:grouphug
We all are tied to each other's heart
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Hi all,
Well said Sajid, despite the fact that many of our members have never met face to face, we have all met via our challenges our accomplishments, and what we all go through in our day to day life. We are all one huge family that cares for ones well being and that has been shown time after time on this forum and that is why i personally am fond of u all.
We have to all face the reality that being tied to life as depicted in the picture being tied to a transfusion pole is true even as a harsh reality to many. Think about it , if we dont have blood transfusions where would we be?
If we didnt have chelation therapy , where would we be? That is the hardest harshest reality to face.
We have to be blessed and thankful for all we have that have assisted us to get to were we are NOW and to keep us getting to were we will be in 10 - 20 yrs time. WE ARE TIED TO THALASSEMIA FOR LIFE and personally I wouldnt have it any other way!
Love u all dearly and I hope I am not to harsh when I speak but I dont like to cotton wool any post, this is reality.
Miaki :kissy
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Ps I forgot to say that I would like for Azis_asim to please feel free to put whatever picture he wishes to do so as his forum picture. And personally I would like to see the tied to life picture back up because when i see it it reminds me of what was me and what i have become and also for the fact that Chris took that photo and his talent should be rewarded
Miaki
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PSS Me again
sorry to be bringing this up again but i have just spoken to my uk contingent and they notified me that not only as Andy mentioned that Chris took the photo which was 16 yrs ago the child in the photo is now 17 yrs old.
Harsh reality people but a great outcome .....HOOK ME FOR LIFE THATS FOR SURE
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Miaki,
I don't think we can ask for any better perspective adjustment than knowing that boy is now 17 because he has been "tied for life." Perhaps we need to remember it also means "tied TO life."
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Ps I forgot to say that I would like for Azis_asim to please feel free to put whatever picture he wishes to do so as his forum picture. And personally I would like to see the tied to life picture back up because when i see it it reminds me of what was me and what i have become and also for the fact that Chris took that photo and his talent should be rewarded
Miaki
:agree
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Ps I forgot to say that I would like for Azis_asim to please feel free to put whatever picture he wishes to do so as his forum picture. And personally I would like to see the tied to life picture back up because when i see it it reminds me of what was me and what i have become and also for the fact that Chris took that photo and his talent should be rewarded
Miaki
:agree
:yeahthat
I agree with Miaki & Canadian_Family! I cannot believe that Azis_asim was asked to remove the photo. Transfusions are our lifeline, without transfusions the baby in the picture would not be a teenager today.
Asim, Get well soon!!
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@andy thanks and i feel i am tied for now but someday i will get free.. and yes this is still the image for the uk thalassemia society homepage @all thank you for your wishes i am feeling better now and my HB is finally normal now
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Asim,
It's good to hear your Hb is normal again. I hope you continue to improve. I know sometimes thal gets people down but rely on your inner strength. And remember that they guy who took that tied for life photo is almost 50 years old now. Everything is possible with compliance.
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@andy i agree and the past two months was really tough for me my hb was 5.8 and platelets were 68 but now finally i am improving and i kept my moral high and kept saying to myself i must fight with thalassemia and i will win it was a battle between me and my disease so either i will win or thalassemia will win and i am proud to say I WON :biggrin
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Bravo Asim , :high5
ZAINI.
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Since this thread was originally started by red,i hope she is doing well,it's been long she posted here,wishing you the best red :hugfriend
ZAINI.