Thalassemia Patients and Friends
Discussion Forums => Living with Thalassemia => Topic started by: cherieann on August 07, 2008, 07:04:53 AM
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Just posted this on another site to help inform people and when I went to proof read it
I couldn't help but have a smile. Although this is our life and that it isn't always funny, I think the way I wrote it helped me to laugh at myself and not get so down so I wanted to share it with you all. :biggrin
For awhile I have been using a slightly longer thumb type needle in my leg.
Kind donation from Thalpal.
Although the needle is slightly longer it is pretty much the same as it does the same job.
I have noticed however that my legs aren't as swollen as with the other needle which I quite like.
Last night however I got abit of my muscle. I knew this as soon as I stood up...it hurt. Yeowh!
That was my first mistake...
the second was deciding to leave it and not change the site.
Yeah I was pretty tired and just thought nope... I'm going to bed.
This morning I was limping but went to work anyway.
I was okay most of the day except when I had to walk and bend down.
I am at home now and I will be putting a tepid face cloth on the site to cool it down.
My leg feels ultra hot.
Then I will be putting hirudoid cream on the site.
After my self maintenace... The needle will be hitting the other leg.
Some of you might be suggesting other sites but from experience...
one night in my arm...made that arm hard to use for a minimum of three days,
legs are no good only thighs as it needs to go subcut. (If there is no meat, like a foot...then it really hurts).
Backside... only in the weekends (I need to sit with the students) hahaha
Stomach.... reserved for insulin
So its back to my thights.
I'm not using my port for this at the moment as I have a virus and I don't want my port contaminated.
Not to mention it needs a rest as the desferal irritates that as well.
Hahaha.. What a life!... but at least I'm alive
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hi cherie :
if u read the full instruction printed on te packing of needle so u will get to know that these needles are not to use on thighs and arm and other bone areas ... these needles r to b used ony on abdominal .....yes here r the complete instructinons to use the neddle :
for abdominal use only . see the directionn sheet for use
steerile nonpyrogennic .do not use if package has been opened and damaged .
use aseptic technique .
peel adhesive protecter from disc .grasp fold of cleansed abdominal skin , avoid area over bone and wastband .
insert the needle to fulll lenght . do not bend the needle .single use only .do not resteriilize , replace at least every 48 hours.
caution : federal (usa) law restrict this device to sale by or on order of a physician ..
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Nice friend...
I have used the thumbtacks on my arms and legs, but never did I once get any reaction from them being in there...
Who reads all the instructions and abides by them...Some yes,, But some you try and do things what you think is best...
I have used the thumbtacks for some time before I stopped using desferal..
Cheers all
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Hi Cherie,
Laughing at our sufferings makes the pain feel less. Our lives are full of pain and if we forget to laugh amidst our pain then our lives will become miserable.
Life is cruel! and if we give up then it hurts even more.
I applaud your attitude :clap as I myself follow the same tactics to keep myself above whenever Thal. tries to take me down.
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Sajid,
I never let my thal put me down, no matter how sick I am... Even now with what I have gone through with interferon, I was still smiling all the way... My gastro doctor and the team were in awe of how I looked at the situation....
I am smiling all the time...
Laughter is the best medicine anyone can have...
:wink
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yeah its a better way to laugh at pain ... when u got to able to laugh on pain u will get to able face the pains ... pain will no more disturb u .... i use to laugh when i feel something bad .. u can't take u self away to pain by crying or weeping .... but if u can face the pain with smile that will make a good experience of pain instead of a bad painfull experience ...... its a superb idea thanx cherie and thanx to all of u who replied on this topic .....
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Laughter is the best medicine anyone can have...
:exactly :agree
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Wow I didn't expect a mixed response :o
Umair thank you for your concern but like smurfette said... we need to adapt certain ways if it makes things less stressful. Doctors follow text, we follow experiences :biggrin
But thank you to you all for your comments and advice.
I just wanted to share something that sounded funny and because I am sort of waddling/limping at the moment it is even more funny. :rotfl
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it's called Laughter Therapy
www.laughteryoga.ca/what.htm
The worldwide laughter movement started in India in 1995 when Dr. Madan Kataria, a Mumbai physician, discovered the physical and psychological benefits ...
What is Laughter (Hasya) Yoga?
Did you know that the average child laughs between 300 and 400 times per day? By the time we reach adulthood we are reduced to laughing, on average, only 12 times a day! Laughter has been proven to reduce stress, pain, and depression while improving creativity, physical vitality and a sense of well being.
these links are realy to read ... plz check these links about laughter therapy yoga
http://www.laughaway.com/moreinfo.htm
http://www.amazinghealing.com/aiyana.php?nav=6&article_id=19
http://www.laughteryoga.ca/what.htm
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thanks for the quotes urmair.
Sajid I agree with your attitude.. its too easy to get down :dunno but if I can counteract with oh well thoughts.. then I can cope
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Hi Everyone.
It has been a while.as usual I've been under the weather,
There for, I thought i will pay a visit to an old friend that i didn't see, for the past four past years.
ok, the drama started when I decided that, the new fees that my current gp has just introduce is too much for me to pay',
After I made an appointment waited for one hour in the surgery for my turn to see the doctor whom is a lady.
Doctor< Kathy
Kathy ,> walk up to the doctor enter her therapy room
Doctor< she looked on her computor and said ,these days we charge $50 for consultation and
we do not bulk bill anymore,
Kathy said<it is ok I will pay because I need a consultation.
Doctor said <,you haven't been here for a while could it be possible that no one wanted to deal with you that is why you are back here.I remember you where having problem with one of my receptionist and I believe you were not happy with me either that is why you went to another doctor.
Kathy was lost she just stared at the doctor she was lost for words never expected to be treated like that
Kathy said< no you are wrong I shifted house and it was too far to drive here, therefor i went there and saw the other doctor because it was better for me.I thought you being a doctor you would have compassion and understood that I was unwell then.
Kathy, then walked out of the surgery.
Then Kathy realised she was dealing with an unstable doctor and it was true,she left her because she was a cow and after four years she is still a cow.
It is so sadand unfortunate, that some of us has to put up with such treatment from derange doctors,
Lucky for Kathy she knew better she went to another medical centre and met with a nice young doctor that treated her with dignity.
I will keep you all posted with next chapter, yes my visits to the doctors, I can say it is classified as a comedy if it was not, I would kill myself from depression because some doctors are so bad they shouldnt be doctors.
God give me the strength to accept the things I cann't change.
I have a lot of story to tell when I get to heaven :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl
Always here Kathy
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Then Kathy realised she was dealing with an unstable doctor and it was true,she left her because she was a cow and after four years she is still a cow
Kathy,
:rotfl :rotfl :rotfl :rotfl :rotfl :rotfl
I'll type some words once i stop rolling on the floor :rotfl :rotfl :rotfl.
Zaini.
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a cow is always a cow LOL!
Zaini you must be having sum experience with zainab's heamo, right ;)? LOL!
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Ayesha,
She was a lot changed in our last visit,i posted about it here some where,don't remember in which thread :) .
Zaini.
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Kathy, i can't believe how a doctor dare to treat her patients in that rude way, Kathy i was so nervous when i read this :mad :mad, isn;t there any place where you can report her bad attitude??
Sorry Kathy for what you had to face ,but you acted perfectly :hugfriend
manal
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Thanks Manal. :hugfriend :hugfriend :hugfriend
Yes I can write to the" AMA" which is the Australian Medical Association.
I am considering what action I should take
I have evidence that this particular doctor has been stroppy and abrupt towards other patients
I also think that she is going through the change of life. she has lost her sense of compassion and kindness, that is if, she ever possess any.
So, would it be right for me to add to her trouble or should I let her hang herself.
I know that she won't get away of belittling me, because eventually, no one get away with hurting others intentionally ,It is sad that she is not aware of the consequences of her arrogance
Her turn will come and I hope it won't be me that report her.
I believe in all thing that is good/,
I thank god for blessing me with compassion and goodness and I will wait and see "what goes up usually comes down,
Kathy
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Hi Zaini.
It was funny how, I thought of you laughing when I was typing the post,
You have got a wicked sense of humour
You an I laugh at most things :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl
Zainab look very pretty in the picture.you must be very proud.
Kathy
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as it is said: what goes around comes around, all we need to do it Wait ;d a little bit wait and see the magic!!!! :>
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Thanks Kathy :hugfriend
That was the way you wrote,you got me imagining a cow wearing a stethoscope :rotfl :rotfl :rotfl.
Zaini.
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LoL Zaini & kathy , you both are hilarious ... your conversation made me happy and smiling like :happydance :happydance :happydance ....... :crackup :crackup :crackup
:rotfl :rotfl :crackup
Umair
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Thank Zaini :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend
Umair I can see you on the side line :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl\\
I'm happy you can laugh.
I promise to be on the straight and narrow :wink :wink :wink
Kathy
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My thought of the Day,
I busy scheming Christmas is around the corner.
My letter to santa.
Dear Santa this year I would like a new Brain, :rolleyes :rolleyes a pair of knees ??? ??? ??? :biggrin :biggrin some specially made chocolates that taste good with no sugar and no fat in it.Ok , if it's too much, maybe a new body altogether.
Have a laugh
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Kathy, can you ask Santa to bring me some new knees too? :biggrin
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I hope Santa is able to bring me a new right shoulder and a personal assistant to do my christmas shopping (I haven't even started yet!!) :biggrin
Sharmin
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Hi Kathy,
Why don't you ask for a new brain for your doctor, a human one :rotfl :rotfl :rotfl.
Zaini.
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Good one Zaini :rotfl :rotfl :rotfl :rotfl
manal
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Zaini,
What away for me to wake up, with a laugh, thank-you girl :hi5girls you are awesome :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl
Kathy
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:blush
Zaini.
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Zaini,
You're hilarious :)
If there were a registry for human brains - I would like to put a few doctors and nurses on the list.... I'm sure we've met all met our share of ignorant "medical professional". Thank god for the good ones!!!
In the past year I have taken little A to visit a doctor for a simple cold and cough. When I told him about the thalssemia, he asked me "Did you know before having him about the risk?" , I told him yes. After this he shook his head and gave me darting and angry looks. To be honest, before my son was born I was told that there was some risk but several doctors told me that the risks were next to nothing and that I should leave it alone because I would do more harm to myself worrying and researching duirng my pregnancy. Of course I would not cause my child harm on purpose, or wish this disease on him. I was hurt, because he was acting as though my son never should have existed. In the end, I let the doctor assess my son - because that is why I was there. I politely thanked him for his help and feeling sorry for his ignorance and closed mindedness I took my son home.
This summer, little A decided to tell an extended family member about his thalassemia. She happens to be a nurse so we thought she would handle it well. Instead she looked at my son - then she pointed at my husband and myself and began saying - "This is your fault -both of you - look what you have done to him!!" My son looked at her in shock and when she left he looked at us, wondering what she meant. It took a lot of reassuring to help him understand that he is no accident and how fortunate we are to have him.
Again, we are going to come accross people like this all of the time all we can do is feel sorry for these type of people
OR
You can put them on the registry for brain transplants!!! :rotfl :rotfl
Sharmin
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Hi Everyone,
Today I woke up more confused than usual,
I was taking comfort in knowing, that "life is not" what is suppose to be but what" it is,"
Then, yesterday, I went to see the movie Australia, there, I heard a new line
The actress said "just because it is ,Why can it be changed
Of course this got me thinking , that is why some of us, or let say, myself, get into confrontation at times because , I have the great desire, to change how "it is", for a better tomorrow for all.
Now that I've manage to confuse you all :biggrin :biggrin
Have a great day :hugfriend
kathy ??? ??? ??? ??? ???
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That is what we need Kathy - courage to bring about change. You are so right, just because ignorance exists about thal and sickle, it doesn't mean we should allow it to continue. I admire your strength my friend, and your determination to bring about change.
Certainly, these doctors must learn to treat the 'whole person' and they should treat us with dignity. A patients psychological and emotional health is just as important as their physical health. Some doctors are wonderful, like the one who is now treating you - and others are like the one who mistreated you and myself. I also think that it is wrong for doctors to not take the time to explain things to patients and their families. Doctors should address our concerns and take into account our wishes. You are right Kathy, things need to change and I hope that as a group we can influence that positive change in the way that thal/sickle cell patients are treated.
In the meantime, I am going to go ask that doctor if his mother knew when she was carrying him that he did not have a human brain :rotfl :rotfl.
Sharmin
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Australia!!i am waiting to watch this one,hugh jackman and nicole kidman :wink
Zaini,
You're hilarious :)
If there were a registry for human brains - I would like to put a few doctors and nurses on the list.... I'm sure we've met all met our share of ignorant "medical professional". Thank god for the good ones!!!
In the past year I have taken little A to visit a doctor for a simple cold and cough. When I told him about the thalssemia, he asked me "Did you know before having him about the risk?" , I told him yes. After this he shook his head and gave me darting and angry looks. To be honest, before my son was born I was told that there was some risk but several doctors told me that the risks were next to nothing and that I should leave it alone because I would do more harm to myself worrying and researching duirng my pregnancy. Of course I would not cause my child harm on purpose, or wish this disease on him. I was hurt, because he was acting as though my son never should have existed. In the end, I let the doctor assess my son - because that is why I was there. I politely thanked him for his help and feeling sorry for his ignorance and closed mindedness I took my son home.
This summer, little A decided to tell an extended family member about his thalassemia. She happens to be a nurse so we thought she would handle it well. Instead she looked at my son - then she pointed at my husband and myself and began saying - "This is your fault -both of you - look what you have done to him!!" My son looked at her in shock and when she left he looked at us, wondering what she meant. It took a lot of reassuring to help him understand that he is no accident and how fortunate we are to have him.
Again, we are going to come accross people like this all of the time all we can do is feel sorry for these type of people
OR
You can put them on the registry for brain transplants!!! :rotfl :rotfl
Sharmin
What annoys me the most is who the hell are these people to determine whose fault was it?they don't know what circumstances were,plus if parents are happy to have this child,who are they to tell the other wise :mad.
Zaini.
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I want to watch the movie as well :)
What annoys me the most is who the hell are these people to determine whose fault was it?they don't know what circumstances were,plus if parents are happy to have this child,who are they to tell the other wise
Can you imagine being a 10 year old - and being told twice within a few months that you should never have existed? These words are very very hurtful and it is unbelieveable that they sometimes come from doctors and nurses. I could not say anything at the time because my son was with me and I could not predict what the next words would be and if they would cause my son more harm. I do think that if I were alone it was my duty to say something so that other people would not experience what we did.
It is a good thing that we have a place to vent :)
Sharmin
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Can you imagine being a 10 year old - and being told twice within a few months that you should never have existed? These words are very very hurtful and it is unbelieveable that they sometimes come from doctors and nurses.
well i never have eperienced or faced the situation like this ... all the docs i met in my life if they want to say somthing that is hard for me they prefered and sent me out ( by sayin ,you are feeling bored by sitting to a long time here??? .. you must walk a little bit ... and then rang the bell and told the staff to take him (me) to thhe play area :dunno :innocent smiley ) .... when i was in very critical and feeling a litle consiousness , a doctor who was running beside my strature continously answering my question and saying ,, "tujhay kuch nahi hoga beta" (nothing bad will happen to you son ) .. .hhehheeh :grin ..... almost 95% of doctors i met were to nice sincere and kind hearted , i m very lucky na ??... yeh i m ...
Another Fact ...
soo i must say that Pakistani Doctors are very kind by behavior and most of girls and boys aimed to be a doctor in their childhood bcoze they want to serve the nation .. i hope zaini will explain this fact...
umair
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Hi Sharmin,
yes indeed
It is a good thing that we have a place to vent
Being able to voice ones' opinions and to be undestood ,gives an individual emotional power within,To often people whom suffer with thal or other illness have no voice
This is why the forum like this one is so important ,it a place where, we all can Vent our feelings in regard to the care and treatment recieved in a safe manner without repercussion.
Emotional stability is important for any one to be able to manage thier illness,
When I mentioned "a soft place to fall" I meant a place where everyone feel listen to and accepted without judgement and prejudice,
This is why I'm so proud of this forum We are a team and we all try to achieve this goal. :clap :clap :clap :clap :clap :clap :clap :clap :clap
Thank-you to everyone and let us continue to move forward.
It is not a coincedence that no matter how far or how incognito or how little we share we are all valuable because we are all here and we all listen or read from each other
I hope I make sense
Kathy
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Just cross my mind and I started to laugh :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl
I would like to think this forum to be like the grandma or grandpa that is so "bias" towards thier grandchildren. They love them so much that in thier eyes the grandchildren can do no wrong :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl.
something to laugh about.
Police knocks on the door.
Grandma opens the door"hello officer"
Police, Mrs smith your grandson was driving without a licence
Grandma, excuse me officer , you are wrong .my grandson is only a little boy and he does no wrong
Police madame he is 30yrs old ,he had a banned on his liscence because he was, drinking and driving.
Grandma but this is my little boy, are you certain :huh :huh it was him .Because I know it couldn't be him
So they continue to argue :tantrum :tantrum :tantrum :tantrum :tantrum :tantrum
untill the police had to arrest the old lady too. :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl
Kathy