Susan, so sorry to hear that your son has been through
so much. it is very hard to live with this when no one
seems to be able to help you. wish we all were closer
in areas so that we could meet from time to time as
some friends & family just don't understand what we
all go through. thanks for your reply it means alot to
be able to share & learn from others. i have seen a
chat on this site but no one is ever there, do u know
if people ever go there. maybe i am not doing
something correct. would welcome any info on this.
--- Susan Rosmann <srosmann@...> wrote:

> Renee,
>
> I am always amazed (although I shouldn't be anymore)
> that people would have to suffer without any help
> for
> this illness for so many years. I still remember how
> awful my son's episodes were without any medication.
> I
> simply can not imagine that you and others have gone
> so long without any relief.
>
> I just wanted to thank you for sharing your story
> with
> us. Sounds like some help will be coming your way
> soon.
> Good luck to you.
>
> Susan
> Mom to Remy 5 ASD and CVS
> & Miranda 7 typical kid
>
>
>
> --- wildstarr2004 <wildstarr2004@...> wrote:
>
> >
> > Hi, my name is Renee & I am 43 yrs. old. I am a
> new
> > member & new @
> > this but I would like to share my life's story so
> > that others can see
> > that they aren't crazy & there are others that are
> > going through the
> > same thing that they are.I have been made to think
> > that I am crazy &
> > my illness is mostly in my head.I have just this
> > week found this site
> > & learned about cvs.I have been suffering with
> this
> > illness for 31
> > yrs.I have read numerous stories this week that
> are
> > like my own & I
> > am so glad to know that I am not the only person
> > that has this
> > illness because there is no doctor that knows what
> > exactly is wrong
> > with me.This is my story & it is a long one. The
> > first time that I
> > got sick was @ the age of 12. I became very
> > nauseated & immediatly
> > began vomiting. For the next yr. this would happen
> > off & on when I
> > got worried about something. I had no other
> systoms.
> > Between the age
> > of 13 to 14 it became much worse with unbearable
> > abdominal pain,
> > severe nausea, vomiting, diarrhea, sweaty then the
> > severe chills. I
> > would be taken to the ER where they would run
> every
> > test they could
> > come up with, all with negetive results. Sometimes
> I
> > would be
> > hospitalized for 2 to 5 days. I would be given IV
> > drips, pain &
> > nausea meds, gastric tube down my nose & throat
> with
> > no relief. It
> > always has to run it's course. I would have
> nothing
> > to vomit but
> > green & yellow bile. The retching is unbearable.At
> > 16 I was sent to
> > UAB Hospital in Birmingham,Alabama to a specalist
> &
> > of course more
> > tests were done all with negative results. After
> > about a wk. or
> > longer I was diagnosed with Irritable Bowel
> > Syndrome. I was
> > hospilized so many times throughtout my teenage
> yrs.
> > to early
> > twenties that it seemed like a normal part of life
> > for me but was
> > always told that it was a ?virus?,
> flu
> > or that they just didn't know.
> > My bouts come mostly during my periods but not
> > always. It almost
> > always starts in the early morning hrs. I wake up
> > very nauseated,
> > severe abdominal pain, diarrhea & then the
> vomiting
> > starts. About
> > every 3 to 5 min.I am vomiting, after about 1 hr.
> > the retching
> > begins. After 3 to 5 hrs. of this I have to start
> > sticking my finger
> > down my throat to try & get relief. I try to hide
> > this fact from
> > family & nurses because they get very upset with
> me
> > saying that I am
> > only making it worse. I have to do this trying to
> > get whatever I can
> > up. I have smoked pot off & on over the yrs. as
> this
> > seems to relax
> > me & helps with the mild nausea but once the
> severe
> > part takes over
> > even pot doesn't help. I lay in a fetal postion
> most
> > of the time when
> > it gets full blown as I can't stand to move. I
> > become very dis-
> > oriented & weak. The last 2 yrs. have been very
> bad
> > for me, I had to
> > give up my job & move in with my mother because I
> > was was so sick
> > daily that I couldn't function. My ER & hopital
> > stays bacame so
> > numerous that I could go to the ER & have to
> return
> > the next day.
> > Hospital stays could be 2 to 3 times in a month.
> > Since nausea &
> > vomiting aren't a systom of IBS the doctors never
> > know what to do for
> > me. My family has become fed up with my illness &
> > keep saying that I
> > can over come this. When I am having a full blown
> > bout I aways think
> > that it would be better to be dead. I live in
> daily
> > fear of when the
> > next attack will happen because I know that the
> > doctors & their meds
> > won't help me. I have read that very young
> children
> > have this illness
> > & I can't stand the thought of them suffering the
> > way that I have.
> > It's sad to know that there are others like myself
> > but it is
> > comforting for me because I now know that there is
> a
> > name for what
> > is happening to me.I am gathering as much in-fo as
> I
> > can for my
> > doctor in hope that he will see that I do an
> illness
> > called cvs &
> > prescribe the correct meds for me including
> marinol.
> > I hope that one
> > day there is a cure & we can all get our lives &
> > sanity back.I live
> > in daily fear of this illness. Good luck to us
> all.
> >
> >
> >
> >
> >
>
>
>
>
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