Thread: i have a rare illness called CVS
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Old 04-03-2008, 01:57   #6
tweetypie/8
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Re: i have a rare illness called CVS
Quote:
Originally Posted by keriene View Post
i was Diagnosed with a rare illness called CVS (cyclical vomiting syndrome).
basically what happenes is you get bouts of vomiting that last anything from 1 hour to 2 weeks.
when i have a attack i usually vomit 50+ times in a hour, it can start at any time in the day/night. My attacks usually last 1 week and i usually go to hospital 1 day into the attack due to dehydration. For the past 3 years i have been in Hospital more than 100 times and have had more than 100 canulers in 1 year.
The reason for this is because with people that have IV fluids alot it causes the canuler to tissue and another one has to be put in, the only bad thing is that where the canulers Tissue one after the other (my canulers usually last 1 day maybe 2 if im lucky) it leaves the Veines hard and Clotted which means they cant find anywhere to put another canuler.
I have had canulers put in my arm,elbow,fingers,palm,foot and leg and now the only places left is my knees,neck,head or chest!
There is no cure or no known cause for this illness but it is believed to be related to migraines.
CVS affects your everyday life because if you are like me and go to school you cant attend school because you are always ill or in hospital, the same for work. There are some Products and foods that may trigger a attack, usually find it hard associating with the outside world because of the illness,loose friends sometimes even family because they are so sure it is self inflicted and you usually have a hard time getting a diagnosis because tests come back Normal and some people just assume it is more mental than physical.

You may be wondering why i am telling you this but the reason is i want to know what you would do if you was Diagnosed with this illness and how you would deal with it!

I was diagnosed 3-4 years ago but have had it since i was 7-8 years old.
Nobody seems to know much about this illness and nobody seems to understand how we feel!

Thanks in advance for the replys i may get

Keriene
i am really sorry to read about your problems ker,but take heed of the good honest advice pea is giving you and above all dont give up.
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