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Post by chicagogal2 on Feb 4, 2011 23:28:18 GMT -5
I guess that there is so much information out there and just because there isn't a cure doesn't mean that there aren't things that you can do to help the situation and that you can live a full and fulfilling life with endo, it's not a death sentence.
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Post by painttheseconds on Feb 4, 2011 23:37:13 GMT -5
I wish doctors would have told me right after diagnosis that I had options and that overall I'm healthy. My old OBGYN who did my surgery made it sound like I had endo everywhere and that it was a total death sentence. She was so negative that it really overwhelmed me. I was misinformed and that still makes me angry. Reading my surgery report and googling the things I didn't understand really helped me understand where my endo was located.
I would tell someone who has just been diagnosed to do research about endo and learn as much as you can. I'm a firm believer in knowledge is power. I would also tell them that they aren't alone and that it is possible to live a full life like chicagogal said.
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Post by KSA on Feb 18, 2011 7:12:15 GMT -5
My husband wants this all over and I get that but the fact is endo is for life we don't get rid of it. The mis information by docs and what people thinks is if we look good we are fine. I can look fine and my makeup collection has gotten bigger since I have been diagnosed so I can hide the lack of sleep or pain in my face.I smile and laugh to cover it all up that is the way I cope.
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Post by Karen on Feb 18, 2011 7:18:52 GMT -5
Um, I think we'd ALL want this to be over with! Fact is, we can't just wave a magic wand.
Keri, your coping skills are phenomenal and I hope your husband at least recognizes that!
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Post by KSA on Feb 18, 2011 7:45:06 GMT -5
Thanks Karen he is back to old Seth...Didn't go to Mri or to Cleveland Clinic with me it hurt and when I mentioned all the stuff about celiac and lack of testing he said nothing like sat there and pretended he didn't hear me. Oh well I'm doing well with it but when I hear you look good I want to scream well I don't feel good!
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Post by Karen on Feb 18, 2011 7:53:05 GMT -5
That makes me sad, Keri. Being sick is stressful for the ones we love, I get that, but sometimes it can make us feel like they're being selfish because WE'RE the ones feeling it every day. I hope he comes around!
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Post by KSA on Feb 18, 2011 8:15:39 GMT -5
I would scream with a smile of course:) lol
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Post by Shannon Elizabeth on Feb 18, 2011 17:19:15 GMT -5
Ugh guys...I had a guy who was an almost boyfriend....like we were getting there (to the commitment of real bf/gf) and then today he jus dropped me cuz I'm a sick girl. I hate this. Last night was absolutely miserable. My parents went out and came home to me screaming in the fetal position. It took 3 hours for mom to calm me down. My dad just came home with some Rainbow Light women's vitamins that are sposed to be easy on the stomach too. And the lady that owns the healthfood store, I used to work there, so she's like a grandma to me. So she sent him home with some organic baby rice cereal fortified with iron to help with my fatigue from blood loss. But I'm so miserable and sick of being this way. So many people don't understand because I don't look sick. Like this guy...he knows I'm sick but he thinks I'm not that sick you know? And says I'm like giving up too easy because I could push thru this if I really wanted to.
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Post by JC on Feb 18, 2011 17:25:48 GMT -5
Oh wow I'm so sorry! How awful! I think that you may be better off without him. If he can't handle you being sick then you deserve someone who can! It's not your fault and it's not fair he did that to you. A$shole.
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Post by Karen on Feb 18, 2011 17:34:34 GMT -5
Shannon, so sorry, some people just don't get it and never will. I agree, sounds like you're better off without without him, doesn't matter how great he is if he's not emotionally capable of dealing with what you're going through. That being said, rejection SUCKS, particularly when stacked on top of tons of pain! But, it's also an opportunity to get a handle on your health, focus all that energy, anger, sadness into finding something that will help your body cope with what's going on. Big hugs, I wouldn't wish what you're going through on anyone!
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Post by gemstone on Feb 18, 2011 18:00:20 GMT -5
Shannon, so sorry you're having to deal with this. I really hope you can find some relief - and a better boyfriend!! Hugs xxxx
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Post by JC on Apr 12, 2011 12:57:09 GMT -5
"But you don't look sick" question of the day:
How long did it take you to get your diagnosis?
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Post by uncomfortable on Apr 12, 2011 13:41:38 GMT -5
Diagnosis??? What's that??
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Post by JC on Apr 12, 2011 14:01:42 GMT -5
HAHA damn. So true.
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Post by JC on Mar 24, 2012 14:45:26 GMT -5
I figured I would revive this thread for anyone who doesn't know the spoon theory or the website butyoudontlooksick.com. The facebook page posts a "Spoonie question of the day" that I found interesting and maybe we can all share input on this topic: "How many of us answer the question "How are you?" with "fine." Tell me how you really are. #spoonie" Attachments:
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