Thursday, March 5, 2009

Who are they, those that ride the dragon??

As cirrhosis progresses and liver function gets poorer, other problems can develop which may include:
• A rise in blood pressure in the veins coming from the intestines to the liver.
Blood tries to get back to the heart by bypassing the liver through
connecting veins, which are not normally open. These veins are found in the gullet (oesophagus), stomach and lower bowel. Increased pressure can lead to rupture and life-threatening bleeding.
• Increased fluid retention in your abdomen - a condition called ascites.
Ankle swelling can also occur. This results from increased blood pressure plus a reduction in blood protein levels normally produced by the liver.
• Easy bruising and bleeding because clotting factor levels in the liver platelets are also reduced.
• The liver may no longer be able to clear drugs from the bloodstream, causing some people to become more sensitive
to the effects of pharmaceutical and illicit drugs.
• The liver may lose the ability to clear waste products from the blood. One of the effects of this can be confusion or coma when such wastes affect the brain. This is called encephalopathy. Jaundice is the name given to the yellow pigmentation of the skin and eyes, which occurs when the liver cannot clear bilirubin from the body.
A typical sufferer's experience:
“I get a lot of liver spots on my arms.
Sometimes I get a number of them and feel
quite embarrassed. I’ve had one about
eight centimetres in size that appeared like
a dark birthmark. Unfortunately, when I
knock them, they bleed easily and I have to
be very careful with bleeding because my
blood doesn’t clot properly…I also bruise
easily, I have bruises all over me.”
“I experience … almost obsessively itchy
skin at times, and all over my body. I also
seem to bruise easily. I’ll wake up in the
morning with superficial bruising on my
skin. My skin gets quite dehydrated [dry],
especially on my face.”


They describe it as fighting the dragon. But the dragon isn't the Hepatitis virus. It is that what makes us human.
The dragon is life and how you live it with the virus and how you have a fight on your hands ,daily, just to get by . It is the fight to put food on your plates . clothes on your back and a roof over your head. The battle to get treated and find someone to tell you how the treatment works and may affect you. It is with the depression and fear which clings to you like sweat. It is in the uncertainty of it all. In the feeling of not having a purposeful life any more. It is with the lack of respect which is given to you by those who should know better.  It is with the itching and scratching , the headaches, the nausea, the boredom of being trapped energy less in the four walls of your rooms. It is with the raised blood pressure, the blood sugars , the monthly blood tests , the fear of not responding to treatment. It is the fight to remain optimistic, to put up with the constant blood tests . It is in the battle to keep sane , not to fly into unreasonable rages. The war is feeling alone and not loved or fit to be loved. It is the guilt of having this illness and maybe passing it on. Fighting not to get worried when your legs swell or you find blood in your urine or stools. It is in the pain which seems to have no focus. The dragon isn't the virus. We ride the dragon and it is what our lives have become.
I relapsed after all my treatments and have found that all forums are mainly for those who have yet to receive treatment or are doing treatment or have successfully cleared.  Little is mentioned or very little support is out there for those who cannot do or failed treatment. My reading of  the web pages I go surfing through ,is, that there is a higher proportion of failed and relapsed treatment patients  than credit is given for. Apart from brief mentions ,nothing else is said .As if the failure to achieve a sustained viral response is CONTAGIOUS and that in that failing will be rubbed off onto others. Yet we tend to be the first to give support and help to those who are in need of it . In our treatments  we are the ones with the experience. Often the ones who had the hardest passages through treatment  we still feel the need to be included. Do we become the lepers of those who feel that Hcv is social leprosy? I am a dragon rider. My shield is scorched and dented. my armour is in tatters. But I ride the beast and it will answer to me. I am and always have been the Rypere.


my morph

The stealer of dreams, he who lives in the souls of others.

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