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From: Genie on 8 Jan 2008 17:04
Hi, all. I read about this group in Elizabeth Edward's book " Amazing
Graces". I don't know what took me so long to find you, but she spoke
so highly of you in her book. Surprisingly, I didn't feel comfortable
in Compassionate Friends as she did. Why it is a surprise is because I
am a people person. So, here I am and this is my story:

In February of 2006, I was diagnosed with Acute Mylogeneous Leukemia.
I did time at a wonderful hospital in Raleigh, NC, about 7 months to
be exact, receiving chemotherapy and IV antibiotics for the infections
I suffered inbetween and during the treatments. I am currently, thank
God, in remission.

As if that wasn't enough of a nightmare, nearly one year out of the
hospital, my 31 year old daughter suddenly died. She had been married
happily for four years, and the joy of my life.

But, let's go back to 1998. Our daughter was diagnosed with Crohn's
disease. From that point onward, her general health plummetted. It
was not the Crohn's disease that plagued her daily, but a spin-off of
the autoimmune disease called Gastroparesis. She felt morning sick
every day of her life from that point on. She had endometriosis, a
pilonydal cyst removed, an avascular malformation on her upper arm
removed, her gall bladder removed,a nearly fatal case of pneumonia, a
herniated disc between lumbar 4 and 5 removed, in between tests for
this, and tests for that unending. She saw five psychiatrists for her
pain, attended two pain clinics, oh and inbetween all of this,
finished college majoring in drama before getting married. The year
between college and her wedding she worked for a third party
parmaceutical insurance company. They hired her because of her
knowledge of drugs gotten from her Dad, a regisitered pharmacist, from
working with him Summers, and then with one of his best friends, also
a pharmacist in another drug store.

As you can imagine, our daughter saw many doctors in those ten years.
Her last Primary Care doctor had her figured for a mental case and had
sent her to Chapel Hill to a very fine outpatient pain clinic there
at the time of her death. She died...........you guessed
it..........from an accidental mixture of the wrong drugs. Her
pneumonia had begun to return and she was afraid of facing it again,
so she doctored herself incorrectly.

Last night I watched an episode of " Intervention", which ironically
was one of our daughter's favorite TV programs. We had discussed it as
a family while I was hospitalized; we knew our daughter needed one,
but her husband was not on board with our thinking. I began to feel
guilty all over again last night, even though the "shrink" in Chapel
Hill told us she suffered from somatization personality disorder, and
probably would not have responded to an intervention. He felt if he
could have treated her for at least two years, she might have come to
" manage" her disorder.

That's it in a very large nutshell. I am interested in anyone out
there who may have known someone with this hereditary personality
disorder, which renders a person with very real pain and for which
there is no cure. Please feel free to contact me,

Genie
From: donna on 9 Jan 2008 02:15
dear genie,

i am so glad to hear that your leukemia is in remission. my mother,
grandmother and grandfather all had acute mylogeneous leukemia so i
know the tough battle you've faced.

you also have my very deepest sympathy on the loss of your daughter.
i know of that too. at times words seem useless, how does one express
the blackness that parents go through when a child dies?

i'm sorry but i don't know anything at all about somatization
personality disorder. i read a few articles that said it was formerly
known as 'hysteria' and there was no physical cause for pain. in your
daughter's case it appears she had very real reason for her pain ...
and that made her self-medicate. i would have to have walked in her
shoes before i could say that i would not have done the same.

this probably isn't the reply you hoped for ... some one else here.may
have an understanding of this hereditary disorder. but welcome, there
are many truly wonderful people who regularly read and write here.
this is the place to be.

best,

donna

From: Cindy's Mom on 9 Jan 2008 11:15
On Jan 9, 12:15 am, donna <donnac...(a)hotmail.com> wrote:
> dear genie,
>
> i am so glad to hear that your leukemia is in remission.  my mother,
> grandmother and grandfather all had acute mylogeneous leukemia so i
> know the tough battle you've faced.
>
> you also have my very deepest sympathy on the loss of your daughter.
> i know of that too.  at times words seem useless, how does one express
> the blackness that parents go through when a child dies?
>
> i'm sorry but i don't know anything at all about somatization
> personality disorder.  i read a few articles that said it was formerly
> known as 'hysteria' and there was no physical cause for pain.  in your
> daughter's case it appears she had very real reason for her pain ...
> and that made her self-medicate.  i would have to have walked in her
> shoes before i could say that i would not have done the same.
>
> this probably isn't the reply you hoped for ... some one else here.may
> have an understanding of this hereditary disorder.  but welcome, there
> are many truly wonderful people who regularly read and write here.
> this is the place to be.
>
> best,
>
> donna

Hugs to you Genie..thinking of you and your loss this day. I too lost
my daughter to an accidental slef-medicated drug overdose and the
emotional pain of those left behind is devestating. She has been gone
for about 15 months and I miss her everday of her absence. I don't
know about your daughter's disorder either, but just wanted you to
know you are thought of and wished hugs this day..Judy, Cindy's Mom.
From: Genie on 9 Jan 2008 11:37
On Jan 9, 11:15 am, "Cindy's Mom" <jehedgec...(a)qwest.net> wrote:
> On Jan 9, 12:15 am, donna <donnac...(a)hotmail.com> wrote:
>
>
>
>
>
> > dear genie,
>
> > i am so glad to hear that your leukemia is in remission.  my mother,
> > grandmother and grandfather all had acute mylogeneous leukemia so i
> > know the tough battle you've faced.
>
> > you also have my very deepest sympathy on the loss of your daughter.
> > i know of that too.  at times words seem useless, how does one express
> > the blackness that parents go through when a child dies?
>
> > i'm sorry but i don't know anything at all about somatization
> > personality disorder.  i read a few articles that said it was formerly
> > known as 'hysteria' and there was no physical cause for pain.  in your
> > daughter's case it appears she had very real reason for her pain ...
> > and that made her self-medicate.  i would have to have walked in her
> > shoes before i could say that i would not have done the same.
>
> > this probably isn't the reply you hoped for ... some one else here.may
> > have an understanding of this hereditary disorder.  but welcome, there
> > are many truly wonderful people who regularly read and write here.
> > this is the place to be.
>
> > best,
>
> > donna
>
> Hugs to you Genie..thinking of you and your loss this day. I too lost
> my daughter to an accidental slef-medicated drug overdose and the
> emotional pain of those left behind is devestating. She has been gone
> for about 15 months and I miss her everday of her absence. I don't
> know about your daughter's disorder either, but just wanted you to
> know you are thought of and wished hugs this day..Judy, Cindy's Mom.- Hide quoted text -
>
> - Show quoted text -

Thanks to Judy and Donna for making me feel welcome. Do you frequently
feel some guilt having not been able to intervene before the overdose?
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