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Smokeater42

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Posts: 1,597
Reply with quote  #1 

I am CVS

 

Most likely you don't know me, unless you are one of hundreds and maybe thousands that suffer everyday because of me.

 

 

I affect thousands not only the ones I attack But the ones that are the Caregivers, i disrupt life, I destroy social lives, i don't kill, i do something much worse.

 

I make people vomit uncontrollably for hours and even days, leaving people gasping for air between vomiting.

 

I hide in the darkness, attacking in the early morning hours.

 

You can't find me, no test can find me, and only my past tells you who I am.

 

I don't care who i attack; i attack infants, children, and adults.

 

I tear apart families; I control people’s lives, many times to the point where they have to be taken to the hospital.

 

I disrupt children’s schooling, i can last for hours or days and sometimes weeks at a time, i put people through cycles maybe once a year, maybe 4 times a year, sometimes once a month even to the point of 2 or 3 times a week.

 

Doctors don't know me, but I have been around since the late 1800's

 

i am called rare, But people find out about me daily.

 

I’ am normally not found for 4 or 5 years and its not uncommon for a person i attack not to find out who i am for 10 or 15 years.

 

I am Evil, for i don't kill but torture people for years on end.

 

I may leave for a while, but i normally find my way back to you.

 

You most likely don't know me, but chances are you know someone i attack

 

I cost thousands of dollars in medical care and testing every year.

 

The people i control fear me, they know that in the darkness i will come again.

 

I am an invisible disorder that is a disability just as much as the visible disabilities.

 

Maybe you do know me, I am Cyclic Vomiting Syndrome or CVS.

 I don’t kill i do worse, I may stay with you the rest of your life

 

Smoke


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When you have CVS life is one puke after another
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Kerriemcconnell

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Reply with quote  #2 
Made me cry no better way to sum up this cvs xx
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Smokeater42

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Reply with quote  #3 
Glad you liked it
Heave hooo
It's Smoke

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bdlogan

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Reply with quote  #4 
Smoke. Been trying to call you. If you see a 760 number its me. Wanted to ask you a few things.
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Sick and tired of being sick and tired.
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Smokeater42

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Reply with quote  #5 
Sorry Bro, I was at a Minister meeting then the FD's meeting
Heave hooooo folks
Smoke

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When you have CVS life is one puke after another
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Layla

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Reply with quote  #6 
That just brought tears to my eyes. Haven a rough time at the mo, and sooooo true
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Smokeater42

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Reply with quote  #7 
Glad you liked it, hugsss hope the tough time ends fast
Heave hooo
Smoke

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When you have CVS life is one puke after another
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Layla

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Reply with quote  #8 
Being able to tk to people who also suffer has changed my look on life.. And my little girls the one who get me through every day. I try talking to friends but they really don't understand, they just know I go into hospital a lot then bk out in a week or so, then no sooner have I gone back. Thank u
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Smokeater42

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Reply with quote  #9 
Well just remember you have family here on CVSA, I use to have attacks ( won't call it a cycle,, its a guy thing grins ) once a week, but since last Dec, its been everyday and in the ER 2 to 3 times a month, I know I wouldn't make it with out my Wife Jo and my Service Dog Rocky, he's my best friend
here's hoping the illness from hell leaves ya alone over the holidays  HAPPY THANKSGIVING
Heave hooooo
Smoke

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Layla

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Reply with quote  #10 
Thank so much it's just taking six years to b told what it was and its now 12 years later and I just take each day as it come. I have a lot of family support who if it wasn't for them my baby girl I wudnt of been able to cope with alone . I really feel for you. I've managed to keep out of hospital for nearly two months now but have had episodes at home and my doctor come to my house and give me anti sickness injections and pain relief and last two I've got through at home .. Keep smiling: )
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Smokeater42

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Reply with quote  #11 
Hi  Congrats on staying out of the ER & Hosp,, I am not so lucky, and WOW you have a Doc that comes to the house, Cherish him, I haven't heard of a Doc doing that since I was little in the early 60's, Yea I am not o sure I'd make it without my family plus one VERY IMPORTANT person, my ESA-Service Dog Rocky, he has been a God send for me
Remember we are The Few ,, The Proud,,The Pukers so puke with pride
Heavooooo  hoooo
Smoke

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When you have CVS life is one puke after another
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Star

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Reply with quote  #12 
Hi ya, Smoke. It's good to see you posting here. Been thinking of you and hoping you are doing as well as possible. My son has been doing well in regards to CVS, but he does have an all together weird GI system, so he does have other troubles...but it's livable. Really glad to hear about Rocky. We hope you, Rocky, and your family have a wonderful Christmas!! Just wanted to say hi. [smile]
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Star

Mom to an 18 year old son who has CVS/abdominal migraine, hiatal hernia, connective tissue dysplasias with joint hypermobility, and possible dysautonomia and mitochondrial disorder.
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MannionUSMC

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Posts: 137
Reply with quote  #13 

Hey Smoke,

It appears CVS hacked your Message Board password and is posting as you.  hehe.  Glad to see you are still kickin'.  Same out here, care is not going great but at least I am used to getting my ducks in order.  Thanks for sharing.  I am hoping to post another CVS awareness essay for awareness day, but I always find it hard to relive an attack to write about it.  Sending you good vibes. 

 

Mannion

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MannionUSMC

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Posts: 137
Reply with quote  #14 

Also a service animal sounds so nice.  I have a cat but he is more trouble then he is helpful (just a lot of work, so I couldn't take on another animal, nor could I always be sure I could walk down the steps to take him out).  A service dog would really help with my seizures and syncope and if you could take them to the hospital with you they would help me there as well.  Right now I get 18 hours of meowing and running under my feet when I can hardly walk. 

Be well

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Smokeater42

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Posts: 1,597
Reply with quote  #15 
Hey ya Mannion, I am orry I never got that you posted something, yea I had a cat, he was a big dink, I am so lucky to have Rocky he has been such a blessing, he has been a major help with CVS expecally at 3 am when you don't want to wake anyone up, I have Rocky to talk to
Hope your doing good and had a good Christmas and it was CVS free
Heave hooooo
Smoke

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When you have CVS life is one puke after another
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