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Post by Karen on May 20, 2011 18:23:31 GMT -5
Oh, dear! Sometimes I think those people don't know what they're in for when they ask for details like that! But good answer - suggesting a badge appears to be a good way to shut him up!
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lisac
New Member
Posts: 16
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Post by lisac on Jun 3, 2011 6:21:04 GMT -5
This thread is so bitter sweet. I laughed and cried as I read it. To read about other people relaying similar conversations is so powerful. After my second surgery at work I was told rather than asked so you'll be better now. I feel like I have to do twice the job to compensate. I also used to run and train a lot with my work colleagues. I ran long distance and triathlons. Now whenever they talk about the training, seems to be most lunches I feel crap. It sounds so poor me to say that and I hate being like that but I feel I can say it here. I don't talk about the endo except with close friends and I told my main boss the big picture but not details. I think my colleagues must just think I'm lazy now and cant be bothered any more. So for me I tend to keep it on a need to know basis. But I feel like screaming about it from the roof tops!
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Post by hellsbells on Jun 3, 2011 16:41:40 GMT -5
I've said this so many times - but just because this is a gynaecological disease does not mean we should be embarrassed or hide away in shame. Our pain and fatigue and other symptoms are very real and we deserve to be heard and accepted and understood.
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Post by 1234 on Jul 19, 2011 18:47:04 GMT -5
I'm reviving this from a little bit ago to ask yall's advice. I've realized that with a couple of close friends, and one in particular, I have sort of pulled back and become MIA, since my surgery. This one in particular is a very dear friend, but she is also pushy--all from the best intentions. She also asks lots of personal questions that I'm not always comfortable answering. Again from the best intentions, and so I feel bad that I am more private about answering.
This has really hurt our friendship, since my surgery, because she has kept calling and calling me, and I never had the answer she wanted to "how are you feeling?". It seems that she doesn't quite believe me that the surgery hasn't fixed the problem--and I've finally had to admit that it hasn't. I just had a full cycle with no mirena or other obstruction, and it was really hard; I'm in a lot of pain--even new/more pain--about 70% of the time. I'm trying to work out the whys of that, but it's a process I need to go through. I don't want to make any more snap decisions, even though teh snap decision to get a lap from teh first doctor that took me seriously was a good decision I think--just sorry that the mirena set me back and that I didn't know to push for an adhesion-prevention thing to be put in or to ask for the surgery to be later in my cycle or other things. But I have learned so much here, so I feel better equipped to make my own decisions going forward.
Anyway, I'm rambling, but the point is I've pulled back from this friend because she seems to think that I'm somehow not making the right decisions and if I were, I woudln't be in pain still. She also keeps pressuring me to go back on hormonal bc and doesn't accept my reasons for not wanting too. She knows about the failed pregnancies, but keeps pushing me to get pregnant, reminding me that I "don't ahve much time left" and that "You know Shane loves kids; I'm sure he wants them; you should give him a baby now before it's too late for you." It's painful, and I've pulled back from her. She's in town right now, and I'm meeting her tonight briefly (she moved from DC to Indiana a few years back), but I'm sort of dreading it.
Any advice?
ps. so glad I have this forum to be able to say these things and know I'll be understood.
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Post by pretty on Jul 19, 2011 18:51:57 GMT -5
yikes. I have the same friend. love her and hate her. I just blow it off. I own this healing, and I control access to it. You dont HAVEto share with her. You don't have to convince her she is wrong. If it was me, I'd change the subject to HER and what SHE is doing/dealing with/experienceing - I might even push too hard, act insensitive, etc! haha no but you can have this friend if you accept her as she is. Who knows with time and patience, and not letting her bulldoze you, she could be one of your rocks someday! she probly just misses the pre-endo you, maybe she's grieving. Just give it time. I have learned lately not to shut the door... leave it cracked, but on YOUR terms, lovely! x
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Post by 1234 on Jul 19, 2011 19:31:37 GMT -5
Thanks so much, Pretty! I really appreciate your response, so much. I'm getting on my bike to go see her, so I'll be putting your advice to work in 4 miles. It won't be a long meeting--I'm pretty pooped and have been very busy at work and need my mind to work tomorrow (lots of writing). thanks again--Kristin
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Post by Karen on Jul 19, 2011 20:10:17 GMT -5
I had a similar friend - after my lap, she got a lot more distant and a lot less interested in how I was feeling once she realized I wasn't 'fixed'. Eventually, we had a really stupid fall-out over something dumb that she dropped the ball on and I didn't bother to chase her. Another good friend keeps pestering me about having kids some day, and finally I asked her to stop commenting about it because I had no clue if that would be a possibility and it upset me when she mentioned it. She's since backed off a bit, though I suspect she'll need a reminder in the future.
I know people mean well, but they don't understand that it's NOT a lack of effort. I think the next time I encounter someone like that, I'd be more open to telling her that I really hope she's never in the same situation some day, but if she were, I'd do whatever I could to encourage her to trust her instincts, listen to her body, and be sensitive of her needs.
Good luck!
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Post by 1234 on Jul 20, 2011 8:03:05 GMT -5
Thanks you all. It actually went ok. I followed Pretty's advice and kept her focused on her life (she has a 19 month old kid, so not difficult). She did pressure me on my health and pushed several of my decisions, but I was able to defend them and she let it go. And fortunately, she did not bring up the child thing. There was a little too much of "you must not have done everything--this is fixable", but she did let it go and we moved on to other things. So, all in all, it was positive. I value this friendship, and don't want to let it go, I just do need my decisions and process to be respected!
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Post by pretty on Jul 20, 2011 11:15:41 GMT -5
I'm glad it was ok. Hey we can't ask for more than that! never know when you'll need that one friend, why throw them away, when they can grow just like we can.
ps I love that you ride your darn bike everywhere! you are a superrockstarbikeprincess! I can't really describe why, but chicks on bikes in traffic is just so brave and free and awesome. lol I am too tippy, no balance... you'll find me rollin in my ford ranger... ps does your jack russell ride in your backpack sometimes?
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Post by hellsbells on Jul 20, 2011 13:07:17 GMT -5
Glad it went well. My take these days is 'You may nut understand it but for the sake of our relationship please just accept it for how it is'.
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Post by 1234 on Jul 20, 2011 14:36:43 GMT -5
All of this is really helpful. I was so sure that you all would understand this and have advice! I'm going through this now in different ways with a couple of folks, most difficult with my mom. My poor mom would like me so much better if I had married the aspiring preacher that proposed to me when I was 21 and settled down to serving a small town congregation like she did, rather than marrying a bike advocacy man and being a tomboy/bike mechanic/intl dev program manager. Her not agreeing with my decisions about endo/not understanding has put an additional wrench in the relationship.
and Pretty, the picture gets even worse. Because I'm sensitive about my height, or lack thereof, I often bike around in 3+ inch heels, wearing a skirt, on a man's bar bike. It's quite a sight. And our dog refuses to be carried in a backpack, but he LOVES to ride on the bikes. He sometimes tries to stowaway in the grocery panniers when we are going to work. But we carry him by putting him in a small crate and tying that on the rear rack with ratchet ties. He's way too crazy not to be COMPLETELY CONTROLLED on a bike. but this is how he comes on longer rides, or if we go bike camping.
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Post by Karen on Jul 20, 2011 17:50:56 GMT -5
RM, super glad things went well. As for your mom, I hope she comes around. I think showing to her how you're able to control the things that you can may help to slowly open your eyes to how you're dealing with endo. As for the other stuff, well, not sure there's much you can do about it than be the super rock star you are! I mean, if you're going to do the tomboy stuff, it at least sounds like you're doing it the kick-ass way! Love it!
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Post by 1234 on Jul 21, 2011 16:38:48 GMT -5
Thanks, Karen! I'll try to put up a picture sometime, of me in the skirt and stiletto heels. For some reason, this costume makes me feel so in control and empowered. no idea why. It makes me feel feminine, but powerful. Just watch out world, you may think I'm a small wimpy woman, but I have a u-lock and I'm not afraid to use it.
I think my mother might come round, at least on the endo, not the tomboy & heels w. bike! It will just take a lot of work I think, and a lot of my making sure I don't react when she says something thoughtless. I really appreciate all of you all's advice, and understanding.
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sharleigh
New Member
Life is full of ups and downs, so up the music and down the vodka ")
Posts: 25
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Post by sharleigh on Aug 8, 2011 19:00:04 GMT -5
I think soetimes being too honest can be too much for somepeople. As i was typing up my introduction to all you lovely gals, i had one nosey little busy body classmate of mine who read what i was writing out to the whole class because she didnt understand what the website ment so i quietly explained ot her what endo was and out loud she screams eww thats gross get away from me i dont want to catch that, a couple of days later she tries to buy me something from the cafeteria and i hate poeple buying me stuff if i want something ill get it myself a then nicely rejected her offer and the F***** B**** punches me in the stomach and wonders why i ripped al hell out of her in front of like 20 people standing in line she then turns around and said oh i forgot you had a f**ked up vagina disease? WTH is wrong with some people!@!!!
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jaye
Full Member
Posts: 165
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Post by jaye on Aug 21, 2011 11:51:14 GMT -5
I love this question! When I finally found out I had endo, I was a little uncomfortable talking about it, especially at work (I work in a male-dominated field). I was pretty open with girlfriends because I knew that I started figuring out my own situation through girlfriend conversations where I realized my level of pain was not normal. I feel that if I am open about my endo, maybe other women might realize what they have sooner.
The more I read about endo, though, the more open I became. I feel that endo girls like us are canaries in the coalmine. I just can't believe that there is much endo in hunter-gatherer societies or even in developing countries. Western diet, sedentary lifestyle, pollution seem to be the culprits. Those things effect everyone, especially kids.
So now when I mention my diet or mention that I'm not feeling well and someone asks about it, I tell them about my endo and explain what that is, if they don't know. If people act noticeably embarassed or their eyes glaze over, I don't go too far. But, most people don't do that. It helps to talk about the bigger picture. So many people are on gluten-free diets these days or know someone who has an autoimmune disease so generally people are interested in the common links.
Sharleigh - that is seriously messed up. She sounds really immature. She should be reported for punching you.
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