I would call this the silent suffering
page. Why? Because most doctors and
people in general heave no idea how these
diseases actually affect your day to day
living! don't
get me wrong, we all have our problems but
when you cant get doctors to take you
serious it's even more frustrating.
These diseases although not usually life
threatening can be life altering! So
many time we go on suffering in silence
with anything from extreme fatigue(not
able to even get out of
bed),insomnia,shortness of breath,swollen
lymph nodes, aches in joints, sores,
extreme skin problems, weight gain/loss,
metabolism...On and on and usually all at
the same time. So any doctors out there
or people who know someone with an
autoimmune disease shoe some compassion
and understanding and don't treat us as if
we are not affected by these diseases!
ps always ask your
doctor questions as not to get
misdiagnosed! Paula please take time to
respond
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san54
Experienced User , Rather EHEALTHy
Joined: 28 Dec 2003 Posts: 227 Location: Virginia
New Forum Topics Posted: 01-16-04 15:53pm
Amen to that we are the only
ones that can tell what is going on in our
bodies we don't look ill,
so we are not
we don't look disabled so we are not it is not in our
heads. We are not making it up.
|
purple333
Extremely EHEALTHy
Joined: 01 Dec 2003 Posts: 1420 Location: Sydney
Amen Posted: 03-20-04 00:32am
My daughter was diagnosed at age 4 with
irritable bowel syndrme but we weren't
told much aside from no acidic
foods/drinks & that was it, until
she went
to italy for a student exchange thereby
changing her diet & lifestyle
drastically & she lost weight, but
drs
diagnosed her as having anorexia nervosa
(after all female, 15 weight loss - what
else could it be) no matter how much we
suggested other possibilities, including
ibs, parasitic infections (she'd been on
farms) carbohydarte intolerance etc - no
we were idiots & wrong, & we were
imagining the huge amounts of food she was
forcing down her throat every day.
They had her on food supplements (which
made kids mum's throw up!!) & then
complained that she was eating too much
& they ewre going to restrict her food
intake!! I removed her instantly &
got her other treatment from a
psychiatrist as by this time she was not
only seriously ill due to eight loss she
was also traumatised by the drs & I
was afraid she would suicide!! (at 15)
the new dr is wonderful, a real godsend,
even typing this i'm almost crying with
relief as she is now back to a healthy
weight & although still traumatised by
what was done to her last year, she
searched the net & found ibs & the
diet for it as well as recipes & she
went on that & is getting better every
second.
Drs do not listen to patients or to
parnets or other family members trhey have
god complexes & should be made to go
through what they put their patients
through & feel what they suffer &
what their families suffer - the drs
reported us to child welfare (thank god
the new dr knows the others are morons -
despite having a world class
reputation).
My daughter at 15 is a f/t
univresity(college) student with an sat1
verbal score of 96th precentile - scored
while at her sickest!! But according to
the drs that wasn't possible since the
anorexia would seriously affect her
academic ability - well that's fine I can
only assume she's get 100 percentile
now!!
Drs have to learn to listen & test
before just deciding & closing their
minds to any other altrnatives.
don't
get me wrong, we all have our problems but
when you cant get doctors to take you
serious it's even more frustrating.
These diseases although not usually life
threatening can be life altering! So
many time we go on suffering in silence
with anything from extreme fatigue(not
able to even get out of
bed),insomnia,shortness of breath,swollen
lymph nodes, aches in joints, sores,
extreme skin problems, weight gain/loss,
metabolism...On and on and usually all at
the same time. So any doctors out there
or people who know someone with an
autoimmune disease shoe some compassion
and understanding and don't treat us as if
we are not affected by these diseases!
ps always ask your
doctor questions as not to get
misdiagnosed! Paula 
please take time to
respond 
we are the only
ones that can tell what is going on in our
bodies 
we don't look ill,
so we are not 
we don't look disabled so we are not 
she went
to italy for a student exchange thereby
changing her diet & lifestyle
drastically & she lost weight, but
