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Glad to be here

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Offline Meme3800

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Glad to be here
« on: August 15, 2007, 06:59:03 PM »
Hello All,

Just a note to say that ...lastnite I was having bad right side chest pain and again starting looking aroud on line.  Wow!! I accidentially found you guys and stayed up last nite very late reading post.  I have included each of you in my prayers and will always appreciate your kind words and shared experience.  I have been told that I have sickle beta thal and doctors difference in diagnois/treatment is really pushing me to the end.  It seems to be all about your insurance vs insuring you a good long life. 

Anyway, i did post some results under test results but am also waiting on more newer results.  Feeling really bad today but I have decided no- more doctors no more being talked to as a drug seeker I'm just tierd.  So I can suffer at home and contiune to pray.


Thanks to all of you for only a higher power knows why I was inadvertly directed here last nite but I love you all.  Andy with Tears I sincerely thank you for responding  I really love you guys/girls don't really know what I have all I know is I suffer a lot.


A GIVING HEART KNOWS ONLY TEARS OF LAUGHTER........MEme
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Offline Andy Battaglia

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Re: Glad to be here
« Reply #1 on: August 15, 2007, 07:06:49 PM »
Hi Meme,

Your problems sound so similar to those of Kathy, who also has sickle and beta thal genes and who has been through so much with the doctors not doing anything for her. I'll look at your results tonight.
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Andy

All we are saying is give thals a chance.
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Kathy11

Re: Glad to be here
« Reply #2 on: August 16, 2007, 12:58:28 AM »
Hi MeMe.
I'm Kathy and I feel for you , I have a fair idea of what you are going through.
When you finish with your crying, wipe your tears and start fighting for your life, you are worth it.
you need to help yourself as much as possible,because my experience tell me that the doctor i have met don't have a clue or they are in denial.Dont give up there are good doctors out there keep looking.Meanwhile,
I suggest you start by
Learning as much about the disorder as you possibily can.look on how you can improve  you diet ,by having the proper nutrient.
Reduce stress and allow youself time to rest .drink plenty of water to rehydrate your body and improve your eclectrolytes ,and try to do some exercise as much as you can tolerate, when you can
I would also suggest you access the help of friends and shares your worries with them.
Sometimes in life we have to accept the things we cant change and change the thing we can
I found this website to be of great support to me and I do pray that you will stay with us and enjoy our company.
We all contributes and care for one another its a lovely place to be .It makes our pain bearable
Good luck and take good care of yourself :grouphug
Kathy
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Kathy11

Re: Glad to be here
« Reply #3 on: August 16, 2007, 01:08:35 AM »
MEME
It is also fair to tell you that I'm on prescribe medications from my Gp ,this has improve my general well-being too.
I stress, you need to seek a good doctor you will no be able to do it on your own.
good luck.
Kathy
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Offline Meme3800

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Re: Glad to be here
« Reply #4 on: August 16, 2007, 01:14:02 AM »
Thank you Kathy,  I just lost the mom who raised me on 4/30/2007 and it's so very hard.  I have done so much research untill I can barely read.  I think I am going to sacrifice and go to Georgia to see a sickle cell specialist.  Don't really know what else to do as I am suppose to be sickle beta thal.

Thanks  so much....Meme
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Kathy11

Re: Glad to be here
« Reply #5 on: August 16, 2007, 01:24:56 AM »
MeMe
I really sorry to hear of your grief .It sound like you are having a reall tough times and having this disorder to top it all.
It no sacrifice , you need to get the best health care you can if you wish to stay alive there are no way around it.
The stress of loosing your mum is agraveting your already fragile Auto-Immune condition
Take care :goodluck :goodluck :flowers :flowers :flowers :flowers :flowers
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Offline jzd24

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Re: Glad to be here
« Reply #6 on: August 16, 2007, 02:26:17 AM »
Hi Meme,
     I am so glad you found this site because it is such a life-saver to have the support of this group. I am so sorry you are suffering so much, for the loss of your mother, and the bad health care you are getting. I agree with Kathy that you should go where you can get better care. Go to the specialists because they are really interested, and they see people with it, unlike other doctors. Have you been to a thal center yet? Good luck and keep your spirits up. Keep posting on this site for info. and support.  Jean :welcome
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Offline Sharmin

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Re: Glad to be here
« Reply #7 on: August 16, 2007, 05:50:13 AM »
Hi Meme,
I hope we can help you on this site.  You will learn so much and find so many friends.

Sharmin :hugfriend
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Sharmin
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Offline Meme3800

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Re: Glad to be here
« Reply #8 on: August 16, 2007, 06:02:34 AM »
Thank each of you so...very much.  You know when we lose loved ones its a good day a bad day.  I'm pretty strong but do get tierd.  Kathy please let me know what you are suffering from, Andy said I remind him of you in regards to conditions.  I will keep trying and I believe i won't find an answer untill I see the specialist in Georgia.  So again thanks to each of you.  This was a very bad day b/c I am in a crisis so I'm going to try and sleep now.

THANK YOU ALL SO VERY VERY MUCH  WILL KEEP YOU INFORMED AS WE CAN LEARN AND GROW FROM EACH OTHER.  Gotta get better as I teach school as a sub and it's almost that time.



TO LOVE IS TO LEARN.....MEme
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Offline vic

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Re: Glad to be here
« Reply #9 on: August 16, 2007, 12:44:26 PM »
Meme,
welcome to the site.
i have found it to be a godsend as my 5 year old was doagnosed with sickle beta thal 3 years ago.  after endless hospital stays and chronic pain that was unbearable to watch him go through, we have started on the journey of blood transfusions.  christian has not had a painful crisis in 1.5 years but the blood transfusions pose other problems for him such as the iron overload.

we thought we were doing everything righ pre transfusion.  we gave him heaps to drink, made sure he was not too hot or not too cold, made sure he did not over exert himself, but he was constantly in the emergency wards on morphine to ease the pain.

even though, he is sickle beta thal, we have been told that the disease manifests itself as sickle cell disease.  i am free to answer any questions.  good luck in finding a haemotologist that you trust and that can help you.  there are new drugs we are hearing about like hemoxide, that seem to oxygenate the blood and stops sickle cells blocking blood flow, hence stopping a crisis.

cheers vic
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Offline Manal

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Re: Glad to be here
« Reply #10 on: August 16, 2007, 12:47:02 PM »
Hi Meme :urwelcome

I am so sorry to know how tired you feel, but i am sure that everything will be much better. Please feel free toask whatever you want any time. We are here to offer you our support and love

Take care and update us :hugfriend
Manal
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Kathy11

Re: Glad to be here
« Reply #11 on: August 17, 2007, 12:31:53 AM »
MeMe.
I have sickle cell and beta thal  and all kind of aches and pain.because of the long term chronic illness I suffer from bout of depression can
be severe  occasionally,
As a result of my untreated sickle cells .My organs are deterioating I now have an enlarge liver.Diabetes.
(hg colestrol) Very high blood pressure.I have two lumps in my clavicles which was not there when i was born(LOL) Basically I'm a wreck almost a recluse.still I'm grate I'm alive and have very good friends and a loving sons.
Good luck MeMe
Kathy
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Offline sydneygirl

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Re: Glad to be here
« Reply #12 on: August 17, 2007, 04:09:00 AM »
Hi Meme,
welcome to the site,i too actually found this site while browsing online one day,
i have thal major but its been a godsend! everyone is fab on here!
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Offline Lyanne

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Re: Glad to be here
« Reply #13 on: August 17, 2007, 12:19:36 PM »

 Hi Meme,
  Welcome! You have come to the right place, I agree with sdyney..... ppl here are so great! Especially Andy and Danielle. You will learn so much from this site......Take care and Godspeed!
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LYANNE :yahoo
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Offline Meme3800

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Re: Glad to be here
« Reply #14 on: August 21, 2007, 08:16:49 AM »
 :heartred :heartred 

Greeting All,

I have never felt so much support in my life.  Just a line to say THANKS SO VERY MUCH.  Each of you have brought tears to my eyes reading your responses...  I am so glad to be here.  Still waiting on results from last test and have been unable to walk this weekend due to severe pain on top of right foot and leg pain.  Woke up this mornng with swollen hands.  So right now just trying to feel beter but had to say.......
                                             THANK YOU ALL SO VERY MUCH.

SENDING A LOT OF LOVE TO EACH OF YOU.......MEme


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