Hi everyone!

  • 11 Replies
  • 11721 Views
*

Offline Danielle

  • Beta Thal Major
  • *****
  • 848
  • Gender: Female
Hi everyone!
« on: February 11, 2006, 07:45:50 AM »
I'm so glad that we opened the forum, and you guys are registering.  I wasn't able to post over at MSN the last few months (MSN wasn't letting me :mad), so I was feeling really left out!   :rotfl

Anyway, some of you may remember/know me, some of you may not, so here is my little (but long lol) introduction!  :biggrin

I'm 29 years old, and live in New York.  I was diagnosed with Cooley's Anemia at 9 months old, and started to receive blood transfusions at that time, and have been ever since.  I receive 2 units of packed washed cells, every 2 weeks, and use Desferal every night (try to, anyway  :( ).

I've had lots of stuff happen to me over the years, and lost a few organs lol, but I'm doing ok right now.   ;D  I'm sure you'll be hearing a lot about my unfortunate mishaps, but if at any time, you'd like to know something about me, please do not hesitate to ask me!  I'm a very open person, and will tell you pretty much anything.  I love helping people, and also love using my horrible experiences to my advantage by helping others who may end up in (or have been in) the same situations.  I also have a huge sense of humor, so you will never offend me with your questions.   :wink

When I was 22 years old, I became really fed up with doctors and nurses treating me and others like pieces of junk, so I started taking classes toward my nursing degree.  I figured that if I became an RN, I would be able to treat patients better than I had ever been treated.  I also figured I'd learn more about things, so I can manage my own health better, by understanding illnesses, and how doctors speak (their medical language), and also maybe get some respect by the medical staff for once, which I have now.  I was sick of being treated like a baby who didn't know what I was talking about, so now when I come in contact with any type of medical staff, they know that I'm educated and know that they cannot fool me.  It's really sad, the things you need to do in this world to take matters into your own hands, when doctors won't listen or treat you for something.    :rolleyes

So anyway, I continued on, and got accepted to nursing school.  In 2004, I obtained my LPN (License Practical Nursing) license, and then when I graduated nursing school in May 2005, I sat for my RN (Registered Nursing) state boards and received my RN license in July 05.  I'm now taking classes toward my Forensic Nursing certification, which I am almost done with (one more class), and I'm also taking classes for my Masters degree in Nursing.  I'm not sure whether I want to be a Forensic Nurse Practitioner, or a Pediatric Nurse Practitioner yet, but I still have time to decide while I'm taking my classes.  I've always loved Forensics, since I was a little girl, and when I found out they opened up the field of "Forensic Nursing" I couldn't wait to get my RN license so I could apply for the program.

I'm having a lot of insurance problems right now, so I actually have my job on hold, until I fix them.  I have the position for pediatric home care, but the coverage that they want to give me will not cover the expenses of my blood transfusions and desferal, so I am trying to get things under control.  I cannot stand the government we have.   :(  I took this particular job, because it wouldn't have me standing on my feet for 14 hours a day, and would be really flexible, so I'm really trying to get this insurance problem under control.

I'm also very involved with the Cooley's Anemia Foundation in New York, and became the Suffolk Chapter's Patient Services Coordinator in 2001.  I'm strictly on a volunteer basis, because I refused to have the Foundation that works hard to help people with the disorder that I have, pay me money that people have donated for us.  I work for them from home, but I go into the office if needed.  So, I should probably tell you guys, that if you happen to call the Foundation and ask for me, I won't be there.   :rotfl  If you need to contact me for something, you can do so by private message or email, and I'll point you in the right direction.  The best people to contact would be National Cooley's Anemia Foundation, though, because they help Thals all over the world, and our Chapter here in Suffolk only handles Suffolk's patients.  I am always in contact with National, though, so I will always try to help somehow if you cannot get it from them yourself.  :)

I knew Lisa personally, and know what a wonderful person she was, so I am extremely happy to be able to help Andy carry on her legacy.  I also want to see our members happy, as does Andy, so we have been trying to perfect this site for all of you, to give us all a way to communicate better.  I'm very happy with the way things turned out, and I hope that we can eventually get everyone here, so we can make this place our home.  Andy and I are still perfecting things, and we'll be adding things as we go along.  If any of you have any suggestions about the forum or anything, please do not hesitate to contact us and let us know.  You are just as much part of this forum as Andy and I are, and without you guys, this forum would be non-existent.  So please, voice your opinions.   :happyyes

I'm looking forward to posting with you all, and getting to know you all better.   :veil


By the way, if you see a guy named "Richard" running around here, that is my boyfriend of almost 5 years.  We have known each other for 12 years now, and he's an awesome guy.  I'm sure you guys will like him.   :wink


Sorry this post was so long.  :blush
« Last Edit: February 28, 2006, 07:43:17 AM by Danielle »

*

Offline Ayesha

  • ***
  • 174
  • Gender: Female
    • Ayesha's Blog!
Re: Hi everyone!
« Reply #1 on: February 11, 2006, 05:11:35 PM »
Quote
By the way, if you see a guy named "Richard" running around here, that is my boyfriend of almost 5 years.  We have known each other for 12 years now, and he's an awesome guy.  I'm sure you guys will like him.

LOL! you will be in trouble if girls started liking him  :rotfl :rotfl :rotfl

You sure you want girls to like Richard :P I know Richard would love it  :rotfl :rotfl

It was great knowing you Dianelle :)

Thanks alot Andy to share the website with all the friends here :)!

Take Good Care of yourself everyone
Bye.
-Ayesha
-Ayesha

*

Offline Danielle

  • Beta Thal Major
  • *****
  • 848
  • Gender: Female
Re: Hi everyone!
« Reply #2 on: February 12, 2006, 02:27:19 AM »
Hi Ayesha!   :wave

It's ok if the girls here start to like him, because they can't have him!  :nana

 :rotfl

Great knowing you too, Ayesha!  I hope you continue to post here with us!   :biggrin

*

Offline Richard

  • *
  • 11
  • Gender: Male
Re: Hi everyone!
« Reply #3 on: February 12, 2006, 02:59:11 AM »
Little do you know i am locked up in a tiny room that Danielle has set up for me.   She calls on me when i am needed for anything... Someone free me!!!  :rotfl

Yeah sorry ladies.. I am taking by Danielle.  She is my guardian angel, and all you guys need to remember that eh..   :catfight

*

Offline Danielle

  • Beta Thal Major
  • *****
  • 848
  • Gender: Female
Re: Hi everyone!
« Reply #4 on: February 12, 2006, 03:42:53 AM »
Little do you know i am locked up in a tiny room that Danielle has set up for me.   She calls on me when i am needed for anything... Someone free me!!!  :rotfl

Very funny. :great

Yeah sorry ladies.. I am taking by Danielle.  She is my guardian angel, and all you guys need to remember that eh..   :catfight

Awww  :wub

*

Offline Ayesha

  • ***
  • 174
  • Gender: Female
    • Ayesha's Blog!
Re: Hi everyone!
« Reply #5 on: February 12, 2006, 09:46:14 AM »
LoL! thats sweet :)!
-Ayesha

*

Offline SK

  • *
  • 1
Re: Hi Danielle
« Reply #6 on: March 30, 2006, 11:57:33 AM »
My names Shuma and stumbled across this site! Im from London and i dont have thals but my boyfriend does and I want to help him in every way I can. I read ur message and its nice to know that people are there to help.

Personally I dont know ne1 else with Thals and alot people i know are ignorant of the topic. The only way i have been getting information is through sites on the net but i would very much prefer if it you could tell me abit more about it.

My boyfriend is very reluctant to discuss it with me. He has thals major.Could you tell me in wahich way i could help him.

Websites have information but not about the lifestyle etc. I couldnt help but notice that you dont look as if u have thals- is there anything specific u took/ were treated with.

i look forward to ur reply

thanx shuma xxxx

*

Offline §ãJ¡Ð ساجد

  • Beta Thal Major
  • *****
  • 1991
  • Gender: Male
  • اَسّلامُ علیکم Peace be Upon you
    • Islamic Resources
Re: Hi everyone!
« Reply #7 on: March 31, 2006, 11:58:55 AM »
Hi,
    Not all of us here are Thals(Well, I am) and anyone can join us for education and awareness. It would be best if you can forward your significant other here so he can disscuss everything that might be useful for himself. I think he would feel better to ask us freely anything rather than telling you and then you ask us. Tell him not to be shy as this is a matter of healthy and happy future!

Sajid
اَسّلامُ علیکم Peace be Upon you
§ãJ¡Ð ®âµƒ
Web Site

*

Offline Andy Battaglia

  • *****
  • 8750
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Hi everyone!
« Reply #8 on: April 01, 2006, 04:25:36 AM »
Hi Shuma,

There are a couple of good websites where you can learn the basics about thalassemia.

Northern Comprehensive Thalassemia Center
http://www.thalassemia.com/


Cooley's Anemia Foundation
http://www.thalassemia.org/sections.php?sec=1&cooleys_sess=acb5ffe0b74fdef2b47125297a396d7f


What you can do to help your boyfriend is learn about thal and be as supportive as possible. Let him know you understand about thal and what is involved in treatment. He may be reluctant to talk about it but assure him you will be supportive any time he does want to talk about it. Go with him when he transfuses if possible and keep him company. But mostly, remember that he is a person just like you with all the same needs as anyone else. Concentrate on him as a person and not as a thal.

We will be happy to try and answer any questions you may have about thal or treatment.
Andy

All we are saying is give thals a chance.

*

Offline Danielle

  • Beta Thal Major
  • *****
  • 848
  • Gender: Female
Re: Hi Danielle
« Reply #9 on: April 09, 2006, 09:58:30 AM »
I couldnt help but notice that you dont look as if u have thals- is there anything specific u took/ were treated with.

Hi Shuma!   :wavey

I think the key to looking healthy is getting the proper treatment.  Getting blood transfusions on a regular basis (if you're *Major* like me) and using an iron chelator to get rid of the iron-overload is very important.  I also began treatment at a very young age (9 months old), so that could also be why I look fairly healthy.   :dunno

As long as Thals do what they are supposed to do, they have the ability to lead a fairly normal and healthy life, for a long time.  We just have to keep up with the protocol, or the illness will catch up with us and take over.

The way to help your boyfriend is to just be there for him.  Don't make him talk about things if he doesn't want to, and when he does, be there to listen.  There really isn't much you can do for him if he's the independent type and doesn't want any help.  If you pressure him into talking about it, he may become even more reluctant to discuss things with you.  Give him time, and he will come to you when he is ready.  Just continue to give him your love and friendship, and he will let you know if he needs your help with anything.  :)

If you have any specific questions about Thalassemia, don't hesitate to ask.   :hug

*

Offline dancam1

  • *
  • 10
  • Gender: Male
  • Me in vegas What a happy time it was!!
Re: Hi everyone!
« Reply #10 on: April 10, 2006, 06:18:10 AM »
HI there, it is very nice to meet you.  PLease read my post.  I hope that you will be able to shine some light on it.  I am glad you have been able to get your life together.  Right now,  I feel like I am going upstream against the niagara falls!
thanks
Dan

*

Offline Danielle

  • Beta Thal Major
  • *****
  • 848
  • Gender: Female
Re: Hi everyone!
« Reply #11 on: April 26, 2006, 12:56:39 PM »
Hi Dan!  It's very nice to meet you, also.  I'm glad to see you posting with us.   :biggrin

I'm sorry you feel like you are going against the current right now.  I feel that way many times myself, as I've had some pretty bad experiences over the years with my health.  It may seem like my life is together, but it's mainly the education part, and not the health part quite yet.   :(

I cannot seem to stay healthy for long periods of time.  There is always something wrong with something.  I'm sorry that you are going through this in your life, and I hope you can get things under control.  We are here if you need people to talk to, or to get advice from.  If you have any questions, or need help with something, don't hesitate to ask us.   :hug

 

SMF spam blocked by CleanTalk