Re: Andrea -WHY B SO NEGATIVE? What are we the MEAN GIRLS?
From: Jess (anonymous@obgyn.net)
Wed Sep 5 19:37:01 2007
Andrea-
It is nice to know that I'm not the only one that feels that way. I
don't see why if the women here who is being negative doesn't agree with
what we have to say doesn't just ignore us. I could see her giving her
opinion about the matter and not trying to bash us while doing it. I
feel she wants to discredit us and make herself look like she knows
more. We shouldn't be competing here. We should be respecting the
opinions of others(because that's what they are) and if we have
something to add then adding it while not trying to prove the other
person wrong. If they may have there facts skewed than we can let them
know in a respectful way. We do not have to be mean and bitter about
it.
I too have had a bad experience with Lupron and think its a shame that
the Dr.s push it on women without giving them all the facts. I am
critisized on the forum for what they think is tyring to steer women
clear of this drug and not to use it ever. However I Never tell them
not to use it, or that it would never help. I let them know that it
left me with debilitating pain in the joints in my leg. When I do share
my experience there are women on here who bash on me for putting the
drug down. Like I said I never tell the women I'm sharing my experience
with that Lupron will too ruin their lives. I just share what it has
done to me and they should research the good and bad about the drug
before taking it. I might have a bias but I never say that Lupron
didn't help anyone. I just like to point them in the right direction so
they can research the drug themselves. Even doing that has gave me the
label of know it all and Lupron basher. I would love to have someone to
e-mail. I am actually going to a rheumatologist for the first time
tomorrow to figure out what the source of my joint pain is and if It
does actually have something to do with the Lupron I used. I would have
liked to seek advice and share my experience with this new Dr. here but
feel its easier to say nothing that to say something and be criticized
for it. It would be great to get your e-mail and then we could swap
stories, treatments and stuff :)
Thanks
Jess
--
jessicarozez@hotmail.com
At Wed, 5 Sep 2007, andrea wrote:
>
>Hi Jess,
>
>Boy, I know your frustration. I have posted a lot on here about what
>I've been through over that past 20 years with my endo, the doctors I've
>seen, medicines I've tried and someone on here keeps accusing me of
>portraying myself as a miss know it all. I am simply trying to help
>those who have just been diagnosed with this disease to save some time
>and money, and not make the same mistakes I made while trying to find
>help all these years. Even after 20 years of researching this disease
>and things to try, I am still learning about this disease. I wanted to
>give women some other options than just Lupron, since that's what all
>the doctors think we should take. I think there are healthier, safer
>ways to combat this disease that won't leave us with life-long problems
>or consequences.
>
>Jess, I want you to know you are more than welcome to e-mail me anytime.
>I have been communicating with about 8 women on here by e-mail and even
>one over the phone. It was nice. I try to be as positive and
>encouraging as I can, but I do tend to badmouth Lupron a lot, because I
>feel the company who makes it is extremely dishonest and doctors don't
>need to push it on everyone so incessantly.
>
>I think what the situation may be is that someone is so miserable with
>this disease, that they take out their frustrations and anger on us,
>which is not right. They need to go see a therapist!
>
>Sorry for any negativity that has been directed towards you. Know that
>there a many wome on here who do care about you and what you are going
>through.
>
>take care,
>Andrea :)
>
>At Wed, 5 Sep 2007, Jess wrote:
>>
>>Sorry to all of you who this doesn't concern. I know this is super long
>>and may not be read because of that. I jsut felt the need to vent. We
>>are going downhill and am afraid if I refer another women with endo
>>here, it will actually be doing here more harm than good. I'm looking
>>for another place to go to talk and another place to refer those who
>>come to me looking for women who can help them. Thank you for taking
>>time out to hear what I have to say. I really do love the women who
>>support me and who've been supporting me from the get go. I have an
>>amount of gratitude that cannot be explained through words. After
>>reading what I have to say you'll realise why I don't know If I can
>>continue to post here.
>>
>>I'm usually not the type to bring notice to something I disagree with on
>>the forum. However for the past few weeks I started to come here daily
>>and have took notice in the non supportive comments made by a poster or
>>posters. I kind of feel like we are back in high school and when
>>someone says something you react with negative comments instead of not
>>reacting to them at all. It just sucks to be have to be hesitant to
>>even ask for help anymore because I worry that if they don't have any
>>advice or anything supportive to say, instead of just not saying
>>anything at all they will post pretty much complaining that you are
>>asking them(or the women here) to help you find some info or give some
>>advice. I feel women come here for support whether that be in the form
>>of sharing your own story or maybe looking something up for them. You
>>might think it would be common sense to just Google in what your looking
>>for, but women come here when they are just starting out with this
>>disease and often need that helping hand because maybe they don't know
>>exactly what to search for. Also Some of these women starting out are
>>looking to know what website we find most credible and use most often.
>>They may not find those great websites unless we tell them what they
>>are. If they do a random search for endo they might not come up with
>>the websites with the best info and it may take them a long time to get
>>good information.
>>
>>When I first sought help here there were so many wonderful veterans here
>>to point me in the right direction. The way things have been going here
>>I can see why a lot of them left and Its just too bad that they were
>>replaced by women who themsleves were once new to the disease and know
>>how that feels but are not very compassionate to those who are just
>>starting out with it. Do any of the women here know of a supportive
>>site i can go to, and suggest to other women to go to that is like this
>>one use to be? I want to feel free to ask questions and answer questions
>>without having to be critisized for what i say. We have turned into
>>what I feel is like the Mean Girls clique in high school and are quick
>>to judge the women here who may no less about the disease. What some of
>>us seem to have forgotten is we were in their shoes once too. We all
>>didn't know everything the minute we were diagnosed. The forum here is
>>to educate and support. Not to criticize someones lack of knowledge or
>>the way they live their lives.
>>So if any of you ladies know of a good site for supporting are fellow
>>endo sisters let me know.
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