What I have been up to

[caraiti]

On Friday gone, I was asked to do a short interview on Thalassaemia.
 Because Friday was Blood World Day, the interview was an opportunity to thank donors for keeping me alive and also to ask people to donote blood. Those were my plans, hehe but I forgot all statistics, and just kept repeating my thanks. At least I remembered that.

http://www.maoritelevision.com/Default.aspx?tabid=278&pid=151&epid=1388

Under Te Kaea

[caraiti]

Hi guys.
Today was the last day of term so I'm on school holidays.
Can't say that I will be lying down as I have transfusion this Friday coming and the following Friday I have teacher only day then hearing test straight after.
In between I will be preparing school work for next term as well as spending time with my nieces.
Have no time to rest. haha
Would love to know how my regulars are doing. Please post so I know that everything is good.
Also don't forget to post questions.
I will answer as best I can.
Take care

[Admin]

Oh caraiti, you did not tell me you are a teacher! Have you receive my PM? 

[caraiti]

Yes I got your PM and I will do my best.
I am a teacher aide based in the special needs unit at an intermediate school.
I love it as I am able to teach skills with computers and this and that, but the children and I learn off one another. They know what I go through and together we find ways to cope with life while having fun as we learn.

[amanda]

You inspires me. I know that chelation is the most painful treatment to remove iron from the body. And If you receive blood transfusions, you should not take iron supplements. and doing so can cause a high amount of iron to build up in the body, which can be harmful to those patient who have thalassemia. Keep it up. Our prayers with you.God bless.

[caraiti]

Thank you It is also people like you who inspire me to continue doing what I do.
God bless.

[jennart]

Caraiti I have only recently found your posts but you are truly an inspiration! It is great of you to share your story and your positivity is awesome I used to give blood and platelets all the time but I've fallen off lately. I am going to make an appointment soon and I encourage everyone else to give blood too (and platelets if you can spare the extra time).

[caraiti]

Thank you Jennart for your comments but it is people like you that I am grateful to.
As you say it is about finding time to donate blood.

Sometimes when family and friends complain about always being too busy to donate,

I remind them that if I had a choice, I would rather donate than spend my life relying on other people's generosity.
Whats 4 times a year compared to monthly visits being transfused. Even then with blood levels donated being low..... makes you wonder.
Again people like you, I truly applaud.
Cherie

[caraiti]

Hi guys
I have been in hospital following an accident I had at work.
Never one to do things by half, I managed to injure my right wrist, cause a haematoma on my left lower buttock as well as drop the container on my left knee which caused a haematoma and infection.
Had an op to drain both haematomas and flush out. Now I am home with the district nurse who comes daily to change my dressings. Slowly getting the use of my hand but need to keep on stretching the ligaments as well as bending my knee. Been told let my pain be the guide.
Have another fortnight of staying home before reviewed by bone doctor. Want to go back to work but have to take it slow.
Hope all is well with you all.
Take care

[tony1111]

OMG! I hopw you are fine. I have been enjoying your posts so far. Thanks for sharing! I hope the accident won't affect your treatment for your condition.

Take care. Hear from you soon!

[caraiti]

Hahaha. I am fine, just my body not as fast as I like.
Really want to go back to work, but I have to stay off my leg.
Have this week and next week to get through before specialist review.
At least the district nurses and my family are having a good laugh as I humour myself through this.
Hate having to rely on people driving me to appointments and not being as independent, but my humour is helping. Work is telling me to rest but I need stimuli for my brain so I have brought home some work that I can do on the computer. hehe should keep me out of trouble.
You take care tony
Caraiti

[caraiti]

Hi guys. The last time you heard from me was when I was recovering from the accident at work.
That was a very slow process of healing which finally saw the closure of my wounds in April this year.
Physio for the knee stopped last month, so at least that chapter is complete.
The last three months have seen me dealing with the pains in my hands which involve locking of the fingers as well as dropping things.  As always I am too stubborn to give up so have continued with work but adapted how work is produced. There are no clear answers for why  have this except it could be because of the diabetes, iron overload......
They have given me the option to operate where they cut the tendons so that the locking can stop. At the moment I am not keen to operate but just plod through life adapting until I can adapt no more.
Right now I have a port a cath infection so I am pretty tired alot, especially in the afternoon.
Refused to be admitted so I am self administering my meds through the port myself.
My haematologist is happy for me to do this as we have been following this plan for over 20 years now and if things get worse then I go in. Fingers crossed that the meds work.

[spulliah]

I know that chelation is the most painful treatment to remove iron from the body. And If you receive blood transfusions, you should not take iron supplements. and doing so can cause a high amount of iron to build up in the body, which can be harmful to those patient who have thalassemia. Keep it up. Our prayers with you.

[caraiti]

It has it's moments. At the moment we are still fighting to get access to the tablet EXJADE. Unfortuanately we have been turned down.
I haven't been on lately as work committments have been heavy as well as my haematologist and I coming up with ideas to make my issues with desferal known. At this stage we are waiting for a reply from the health minister regarding access to the drug exjade after I wrote a letter to our Prime Minister. Fingers and everything else is crossed.

[Admin]

It has it's moments. At the moment we are still fighting to get access to the tablet EXJADE. Unfortuanately we have been turned down.
I haven't been on lately as work committments have been heavy as well as my haematologist and I coming up with ideas to make my issues with desferal known. At this stage we are waiting for a reply from the health minister regarding access to the drug exjade after I wrote a letter to our Prime Minister. Fingers and everything else is crossed.

Nice hearing from you! Just for others' information, EXJADE (deferasirox) is an iron chelator. Is EXJADE so expensive that it needs special approval in your country?