Re: {{{{ Sally}}}}
From: Belle (anonymous@obgyn.net)
Tue Oct 31 21:36:39 2000
Hi Sally,
{{{{ Hugs }}}} To You.Glad I could be of some help to you.
I must run now as its our Big Endo Information night(For Australian Endo
Awarenes Week) and my crew are filming it and I have to make sure my stall
for the documentary runs smoothly,which I am sure it will.I have a great
endo sister and team helpng me .Well I must run I will write more tomorrow
or maybe tonight if I can sleep again.
I hope you all are having a pain free evening .
Best Wishes,
Belle.
>----- Original Message -----
From: nsmitch <anonymous@obgyn.net>
To: Multiple recipients of list ENDO <anonymous@obgyn.net>
Sent: Wednesday, November 01, 2000 12:26 PM
Subject: Re: {{{{ angie }}}} and to everyone else....
> Thanks Belle for the Mendo site....Just read it and cried, cried a lot.
> I have done this for 22 + years ALL ALONE and have never had anyone who
> really
> understood. All doc appts. etc. have been alone. (As you know I am
> "permanently disabled" and have had to face some pretty serious talks
> regarding possible diseases and my own mortality) I get a ride to
surgeries
> but that's it. I have always been the caretaker and of course my old
> position as counselor helped foster the belief that I could handle
anything.
> I am beyond tired of hearing how strong I am!!
> For Angie and others, I apologize that yesterday's letter was not as
> supportive as some of the rest of yours. I had to step back and really see
> what's going on with me. Angie, you hit a nerve (as did all of the other
> mail). I think I came back here too early and maybe should have waited
until
> after Friday's surgery. I can tell you all now that I am worried. The
pain,
> etc. now is like that I had many years ago. I have always had severe pain
> and have learned to live with it but this is beyond what I have gotten
used
> to. I cannot tolerate most pain meds so Advil is mostly all I have.
Anyway,
> this Friday will have some repercussions that I am not quite ready for and
> what's worse is that I have to tell my guy over the phone and will not be
> able to truly gage his reaction. He is new to this disease and I have
tried
> to warn him off from talking to people who "know" because most often those
> "in the know" are still living in the dark ages with this disease. As I
> understand it, I am a rarity as I have had this for so long and have been
> able to avoid a hysterectomy and I still "may" be able to have children
> (none so far, but we'd like to try...if it is in the cards. Been preparing
> for the bad news since I was 17 though). Note of thanks to the docs who've
> kept me patched together, cried with me, held me, and made informative
> decisions WITH me regarding this disease.
> I appreciate the web site Belle and will pass it on to him. I grieve for
> those of you who have opted out of intimacy. It is very important in
> relationships. I still engage in sex although I am in pain more often than
> not. I still grieve that I have difficulty being "on top" like most women
> supposedly enjoy (too painful and my breathing probs don't help the
> situation) but I have been able to improvise and find other ways/positions
> of being on top, etc. Sometimes it is too painful to be touched at all and
> my guy is learning that gentle caressing and kissing all over and
especially
> where I hurt helps me redirect my focus and I can relax and enjoy our time
> together. I also have a rule: "I decide when it is TOO MUCH pain NOT
YOU!!"
> I know that seems unfair to him, but because my only other choice is no
> intercourse I will always choose some pain over nothing.
> As some of you know, I am also losing sensation all through my body and
also
> have additional nerve activity/pain. I have come to the conclusion that to
> feel pain is better than to feel nothing....Mon Dieu how it killed me the
> first time he held me and I thought he'd moved his hand off my thigh but
it
> was still there :'-( We cried together; I cry now because the loss is
> progressively increasing....as is the pain.
> How do you make anyone understand what this disease, or any
> disease/disability feels like? You can't fully, but you can hope for
> compassion and you can be compassionate yourself. I find myself
short-fused
> and scared and I have to retrace my steps and explain where everything is
> coming from. I owe him and myself that much. (Belle I will pass this site
on
> to him to read, thank you.)
> As for my family members, etc. I have learned that they will NEVER get it
> and I have stopped fighting that. The doc talks only to me post-op because
> my ride always gets the info. wrong. You see, people who care for us also
> NEED us to be okay especially when they feel helpless to "fix" the
problem.
> Again to Angie, I apologize for being too wrapped up yesterday to see what
> you really needed and I thank those of you who were able to give her the
> compassion and words necessary.
> Namaste to all,
> Sally
> If words could say all that we feel, there would be no need for an
embrace.
> But language has its limitations, and the heart has none. It expresses
> itself spontaneously in even the smallest things we do. -Robert Sexton
>> ----- Original Message -----
> From: "Belle" <TinkerBelles@bigpond.com>
> To: "Multiple recipients of list ENDO" <endo@mail.medispecialty.com>
> Sent: Tuesday, October 31, 2000 4:10 AM
> Subject: Re: {{{{ angie }}}}
>
> {{{{{{{ Angie}}}}}}}
>
> Vent honey it helps sooo much and alot of us understand exactly what you
are
> saying.
> I know what its like to have an uncaring partner.After having my first
> lap..I had my bowel knicked causing me to have PID and I was rushed back
> into hospital 80 pounds and dying..my then fiance was out drinking with
the"
> Boys" while the doctors where deciding whether they should rush me back in
> for an emergency laparotomy..
> I understand how you are feeling and it hurts so much when you can not
make
> them understand the extent of our pain & suffering.
> If you ever need a shoulder or an ear I am always here.
> Best Wishes and a Warm Welcome,
>
> Belle.
>
> P.S The site Mendo's is a Site for The Partners of Endo Sufferers.. Check
it
> out..... both their sites are Brilliant..
>
> John's page: MENDO - Men and Endometriosis:
> http://www.geocities.com/HotSprings/Spa/8449/
>
> Carey's Endo Window with Endo Sister's Survival Kit:
> http://www.geocities.com/HotSprings/Spa/8509/
>
>> ----- Original Message -----
> > From: "Angela" <angelaandthom@hotmail.com>
> > To: "Multiple recipients of list ENDO" <endo@forum.obgyn.net>
> > Sent: Monday, October 30, 2000 2:33 PM
> >
> > > Hello,
> > > I really need to vent right NOW!!! I really just need a really good
cry.
> I
> > > am so upset with my husband right now.
> > > Well I went to my Dr. appt. today! The doctor wants me to continue
> taking
> > > the bcp's for 2 more months so Dec. 7th and am going to see her and
she
> is
> > > going to decide whether to do another lap or not. Anyway I told my
> husband
> > > that and he said its hard for him to take time off so we will NEED to
> > > schedule it according to when he can take time off. Also 10 min. ago I
> > > talked to him and he wanted to go running with me tonight and I said I
> > dont
> > > know whether I am running tonight because I am not feeling well today
(
> > > nothing new ) and he says he doesnt have time for this. My husband
does
> > not
> > > know what I am going through and it really pisses me off. Its not a
> > *&&&*&&
> > > joke I need this DAMN surgery. I am sick of being tossed around by the
> > > doctor, oh take this pill, no take this pill oh if that dont work take
> > this
> > > pill, and it that doesnt work keep a damn log!!!! Shit!!! I dont have
> time
> > > for this I have a 7 1/2 month old that I like her to be happy 24 hours
a
> > > day!!! I can't be sick anymore. And I will not schedule the operation
> > around
> > > my husbands time, my parents will have to take care of my daughter. My
> > > husband doesnt want to believe that I have a disease. He is being very
> > > selfish. Who cares how I am feeling as long as he is happy, thats all
> that
> > > really matters. angie
> > >
> http://www.hotmail.com.
> > >
> >
>
> > >
> >
>
![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)