I feel i have reached the end of my road.....

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Offline howard

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Re: I feel i have reached the end of my road.....
« Reply #15 on: January 01, 2008, 08:31:52 AM »
Hi Ambreen,

Firstly lets welcome the New Year 2008 together and embrace that our health will improve. I'm glad that we can touch your heart and I believe everyone of us here is willing to fight the battle with you together.

Cheers...

Re: I feel i have reached the end of my road.....
« Reply #16 on: January 17, 2008, 11:23:57 PM »
oi!! I found you!! you know what .. you've got mesmerizing smile .. guess karo who might I be :P

Re: I feel i have reached the end of my road.....
« Reply #17 on: January 17, 2008, 11:31:57 PM »
let me give you few hints
I once said to you , "don't worry imma manage it"
the place wasn't nice
nor the crowd was
but ofcourse I was unaware of it, being a nostalgic :P
a complete stranger in your city

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Offline Alia

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Re: I feel i have reached the end of my road.....
« Reply #18 on: January 20, 2008, 06:22:44 AM »
dear Ambreen
please dont lose your hope,reading your post have made me very sad i got a daughter who also got thalassimia major,i worry about her all the time, as how would she cop with this battle of thallasimia. One thing makes me hopful is knowing that there are pple like you out there ,who  battle so much with this sickness and still you have high sprit. so please dont think that u are alone , we are all here if you need to talk.lots of love
alia

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Offline Ambareen

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Re: I feel i have reached the end of my road.....
« Reply #19 on: January 20, 2008, 10:05:13 AM »
    Salaam to all my dear dear friendz......... it makes me feel so happy being around so wonderful ppl, and insha allah i will cop up with it....... i dont know why i got all this weird thoughts when i got so loving and caring ppl around me... you all are my inspiration and i will cherish it all my life.... Thank  you is a very small word to say......   
    Can somebody tell me something about cupping ? Which i have heard about and i guess it may help us to an extent to atleast prolong our transfusion time..!!! May Allahs blessing be showered on all of us insha allah.... ameen
Ambareen... :)

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Offline Andy Battaglia

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Re: I feel i have reached the end of my road.....
« Reply #20 on: January 21, 2008, 03:07:03 AM »
Hi Ambareen,

I'm glad your spirits are higher now, and you are right that you do have many friends here. I hope you saw a couple posts from someone (DeMoGoRgOn) looking for you. I know you've helped a lot of people at the thal center and I hope you will feel that you can do that again. Serving others can be thankless and at times quite difficult to continue but every once in awhile, someone says something to you that reminds you just how much good you do, and I am speaking from my own personal experience here. For me, losing friends is the hardest part of doing what I do here and at times I just don't know how I can continue, but the people here always seem to know when I need to hear something positive, and it sets me back on my path. Serving others is a humble path but nothing is more noble. I hope you always will know how much others benefit from your actions. Your smile alone has an incredible effect. Your selfless giving is a truly wonderful thing.

One bit of advice I want to give you, as the more I think about it, the more I realize how serious this issue is. Whatever it takes, you must defeat hepatitis. If herbal medicines can control it, do so. if they are not enough, you may have to use interferon to treat it. I would suggest you talk to Shikha Mitra about her daughter's experience and what she did to fight hepatitis. What happens in your liver affects how all your other meds will work and I suspect the reason your ferritin rose is related to hepatitis. It must be taken very seriously as its effect will aggravate every other condition, If Lisa's hepatitis had been controlled, I have full faith that she would still be with us. Interferon will not work well when the ferritin is high and I am positive this is the reason that interferon therapy failed to control her hepatitis after her early success with the drug. Her inability to take sufficient amounts of desferal led to a ferritin level high enough to interfere with the effect of interferon and also insulin. Please do whatever it takes to control this.

I had never heard of cupping until your post,  so I did some searching. From

http://www.japanesehealingarts.com/japanesehealingarts/cupping.html

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Cupping

In China, archaeologists have found evidence of cupping dating back to 1,000 B.C. And, the Ebers Papyrus, one of the oldest medical textbooks in the world, describes the systematic use of cupping by the early Egyptians, as far back as 1,550 B.C.

Typically, cups are round vessels, 1" to 3" in diameter, and are applied to the body with vacuum suction. The vacuum is created either by means of heating the air inside the cup or by a mechanical pump. The result is that the cup creates an area of low pressure, causing the blood to gather under the cup near the surface of the body. Through this process, the circulation is dramatically increased around and below the surface of the skin where the cups are applied.

Traditionally, cupping has been used to improve blood circulation in the underlying tissues and to stimulate the internal organs. As a result, cupping is indicated for a wide range of digestive, respiratory or gynecological problems where stagnation of "qi" energy or blood is indicated.

During a cupping treatment, the patient experiences a mild pulling sensation which calms the sympathetic nerves and allows a deep relaxation to move through the whole body. It is not unusual for someone to fall asleep during the treatment, waking up afterwards feeling relaxed and refreshed.

For more information about cupping, read "The Ancient Art of Cupping" in the Articles section.

I would also suggest looking at the article about shiatsu on the same site at

http://www.japanesehealingarts.com/japanesehealingarts/shiatsu.html  as shiatsu claims many of the same benefits as cupping.

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Shiatsu

Shiatsu is the Japanese art of finger pressure. Most people associate shiatsu with massage, but actually it is quite different. Shiatsu consists of rhythmic, single point finger pressure applied along the "qi" energy channels or meridians of the body. Shiatsu is simple, safe, non-invasive and at the same time, very effective in the treatment of many acute and chronic disorders.

Based on research in Japan, it has been documented that shiatsu is very effective in calming the sympathetic nervous system and improving the tone and function of the muscles, nerves, blood vessels, lymph nodes, endocrine glands and internal organs. In addition, it has been shown that shiatsu assists the body in eliminating toxins and metabolic waste. As a result, shiatsu is effective for a wide range of problems, including hypertension, headaches, dizziness, irritable bowel syndrome, muscular or skeletal pain, insomnia, nausea, diarrhea and other gastro-intestinal disorders.

After a shiatsu treatment, one feels lightness in the limbs, renewed energy, and an overall sense of well being. In addition, most people experience improved digestion and deeper sleep. This is why I recommend routine shiatsu treatments as the basis of a health maintenance program.

For more information about shiatsu, read "Shiatsu for Stress and Health Maintenance"in the Articles section.

You can see a video of cupping technique at http://www.youtube.com/watch?v=aCCCq1jJY-w

Can this help extend the time between transfusions? I often talk about optimizing the ability of the body to deliver oxygen to the cells. Why does thalassemia damage and eventually kill? It can be explained in very simple terms.  Not enough oxygen is delivered to the body's cells for them to survive. Transfusion temporarily increases the amount of oxygen carrying capability of the blood, but can anything else be done to improve the efficiency of oxygen in the body? The answer is yes. We talk a lot about increasing fetal hemoglobin levels with wheatgrass, resveratrol, folic acid, and drugs like hydroxyurea, but there are things you can do to extend the life and improve the efficiency of red blood cells. Vitamin E can help improve circulation and is also a strong antioxidant, which can help extend the life of RBC's. IP6 is also a good antioxidant and has been proven to protect cells from the damage done by iron and is also a natural iron chelator that is also the subject of research into its effect on lowering blood sugar levels in diabetics. L-Carnitine can help extend the life of RBC's. These are things done internally. Cupping, shiatsu, massage and other manipulating techniques can all have a positive effect on circulation and may have some effect on how long you can go between transfusions. They can definitely help your circulation which will help your blood to be more efficient in delivering oxygen to your cells. Cupping may also remove some toxins so there may be an added effect. These methods can all aid relaxation and help clear the head, so there may also be some therapeutic value.




Andy

All we are saying is give thals a chance.

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Offline Ambareen

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Re: I feel i have reached the end of my road.....
« Reply #21 on: January 21, 2008, 02:07:26 PM »
Hi and Salaamz to all,

   Thankyou Andy for the info about cupping and shiatsu. i really appreciate for all that you do to make our lifes easier and things you do to bring smiles over our faces.

   Another good thing that i switched my insuline from Lantus to Humulin R, But still i cant understand why my Sugar goes up when i dont even eat anything sugary or stuff that would increase my sugar levels, now itz reached to 300 but it goes down when i take Humulin R. And for my bone dencity they give me calcium 600 and a yearly med through IV called Zulidronate, but i mostly keep getting crackling sounds from my bones when i wake up , sitting down or do any movement.  :dunno
Ambareen... :)

Re: I feel i have reached the end of my road.....
« Reply #22 on: January 21, 2008, 04:46:39 PM »
Hi Ambareen
Gald to see that you are in better spirits. I normally come to this forum for support as you are right...its hard at times to hope that things will get better, especially when something else happens to you. I just wanted you to know that I have included you in my prayers as well asking that God gives special strength to you.

Roanna

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Offline Ambareen

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Re: I feel i have reached the end of my road.....
« Reply #23 on: January 21, 2008, 05:08:49 PM »
You know what.... you all are those special ppl who God have send down for us....... i really feel very blessed to have you all around me...... always keep me ur prayers
Ambareen... :)

Re: I feel i have reached the end of my road.....
« Reply #24 on: January 21, 2008, 10:37:58 PM »
Ambreen .. remember that guy you handed over some syringes and all stuff :/ in dubai .. weird hotel .. weird crowd .. ???
bahhhhhhhhh don't think so ...!! :/

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Offline Andy Battaglia

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Re: I feel i have reached the end of my road.....
« Reply #25 on: January 21, 2008, 10:52:48 PM »
DeMoGoRgOn,

Was this the recent needle exchange that sent needles to our friends in Pakistan?   :biggrin
Andy

All we are saying is give thals a chance.

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Offline §ãJ¡Ð ساجد

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Re: I feel i have reached the end of my road.....
« Reply #26 on: January 22, 2008, 08:22:09 AM »
Needles? Pakistan? :huh
اَسّلامُ علیکم Peace be Upon you
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Re: I feel i have reached the end of my road.....
« Reply #27 on: January 22, 2008, 11:56:32 AM »
you should have seen the look on me face when I first arrived there, but I was too tired to go elsewhere and literally fedup cause I didn't like dubai one bit .. the cabbie was a cheater took, 40 riyals/darham wahtever the currency is, from me.
And all the hotels were fully booked, been to many hotels and everywhere it was like Sorry habibi! we are fully booked..  that didnt' leave me much choice.. you see, so I finally settled there without knowing WHAT WAS GOING ON THERE, but as soon as I entered the elevator I got to know things were gonna get a bit too kinky :P, but Alhamdulilah jitna suthra andar gaya tha waisa hee saaf suthra dubai say lauta hoon and I never plan to go back, its a bad bad bad place and I have this amazing quality of catching up bad STUFF quickly but Alhamdulilah FULL BACHAT .. alright I wasn't really expecting to see any FEMALE GUESTS, so pardon that dumbfounded look on me face, and I wasn't rude .. that straight face was to hide the embarrassment I felt then, hope that explains everything ;)

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Offline Andy Battaglia

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Re: I feel i have reached the end of my road.....
« Reply #28 on: January 22, 2008, 08:35:48 PM »
Hehe.....I think I know what you mean about some of the hotels. I was a bit surprised on my first trip there to see so much "activity" in what is a fairly conservative place. My second trip it was a shock because there was some big convention in town and the hotel I was planning on staying at was suddenly overrun with workers from the world's oldest profession. Yikes! I did end up elsewhere.
Andy

All we are saying is give thals a chance.

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Offline Danielle

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Re: I feel i have reached the end of my road.....
« Reply #29 on: January 23, 2008, 10:02:40 PM »
Ambareen, I'm so sorry that you weren't feeling well, but I'm glad you are doing better.  :hugfriend

I'm sure that all of us feel that we are at the end of our road and feel like giving up at times (I know I do), but we have to keep going and not let this disorder win.  I'm so glad that you came here to vent, because we are all here for each other, and no one knows the trials and tribulations of Thalassemia best than others with Thalassemia.  Please keep your spirits up.  I know it's hard, but please try.

I feel the same way about my ferritin.  I keep using my Desferal, and the numbers keep rising.  It's so frustrating.  When I went to get blood yesterday, I was actually excited to find out my ferritin level, thinking that I was doing really well with my  medicine, and that the number would be lower.  Well, to my surprise, it was higher ... a LOT higher.  Now, I know that some experts say that the level in the blood sometimes increases before it falls, because it's pulling from the organs, but I just think that I'm never going to get ahead, because of all the blood that I receive.   :-\

I'm sorry, this post wasn't mean to be about me.  I just wanted you to know that I feel for you, and we are always here for you.   :bighug

 

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