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Post by Shannon Elizabeth on Sept 10, 2010 17:43:38 GMT -5
I know none of us like to deal with endo...but I'm just really extra exasperated today. Things haven't been too bad this week...better than last week at least...but I'm sick of feeling like I'd rather crawl under a rock like Patrick on Spongebob than be out with my friends, or doing much of anything for that matter. I don't even like to drive into town by myself because I hate driving and going places and getting sick. Its easier to just stay in bed. But I don't want to be like that. My friends call me a hermit and a homebody...but its like, what do you do?
Yesterday I was talking with my friends about doing something before I leave next Friday and I mentioned our local dairy just in conversation. How, since its fall, they have their fall only ice cream, the wonderful, Caramel Apple. And how much I'd love some. So they were all like "LETS GO FOR ICE CREAM" And I'm like wait wait! I can't. That's way off my diet. And my best friend says "Well you can cheat once in a while can't you? Its not like its going to kill you." And right there shows how little they understand. I know she's not trying to be hurtful, but I explained that its not that I won't cheat, its that I don't want to get sick and be in pain, and if I eat a whole thing of ice cream, I WILL BE IN PAIN. Agh. So we ended up deciding on going to lunch and bowling...of course I'll have to be picky at lunch, but at least theres always a salad right?
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Post by hellsbells on Sept 10, 2010 17:57:24 GMT -5
Friends don't always get it, and for the most part I think they just want to see have a bit of fun and live normally. I have lots of cheats that might cause a bit of pain/discomfort, but one or two thinfs are actually worth it! Caramel Apple ice cream sounds amaaayzing! But yup, salads can be quite delicious too! Go enjoy what you're comfortable with xx
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Post by pretty on Sept 10, 2010 17:57:59 GMT -5
and if I eat a whole thing of ice cream, I WILL BE IN PAIN. Agh. So we ended up deciding on going to lunch and bowling...of course I'll have to be picky at lunch, but at least theres always a salad right? and honey there's your answer. you have expressed your feelings, looked at the situation and the options, and made a good compromise. I'm proud of you and I must say I'm sure a lot of the women on here are sort of gunning for you, you being so young and yet handling it so well and so pro-actively. You're in the right place, you're not giving up, and we're here for you. Keep it up. And me personally I don't miss ice cream since i have found COCONUT SORBET mmmmm mmmmm mmmmm! ha ha! way too sugary, totally bad, but dairy free. yay!
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Post by Karen on Sept 10, 2010 18:00:42 GMT -5
I feel you... When I was at my worst and friends one by one stopped asking me to do things because I always said no, I convinced a good friend of mine not to stop asking. She seemed shocked that I'd even imply that I'd want to hang out in the future, she seemed to take it personally that I just didn't want to hang out, not because I didn't want to hang out with her because I was drugged up and felt like crap. Once we talked about it and I explained it all, she was really cool about it and continued to ask me to do things and was understanding when I didn't. But some other friends? Yeah, they dropped down on my list of good friends during that time, and it became crystal clear who my good friends were and who weren't.
And I hear you about the pain. A bunch of us get together every month for dinner and we each rotate picking a restaurant. And of course, the one friend that insists all the gluten in the world isn't bad for you and looks at me like I'm crazy when I decline certain food picked a pasta place. Sometimes I think it's just to spite (she's one of the ones that's low on my friend list per the above paragraph)...
My point is, some friends will get it and others might not, but at least know that you're not the only one that's felt that way!
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Post by Shannon Elizabeth on Sept 10, 2010 18:22:01 GMT -5
Oh sure, I do have my cheats, and most actually I do okay with. But lots of dairy is a big no no, and wheat and soy seem to be manifesting themselves to be the same. The other thing is, usually anything any of them ever opt to do, involves sports. Living in northern Wisconsin, everyone loves football, skiing, running, and most of my friends are quite athletic. And one thing I've found is that running around just makes my pain worse. They all think they seem to know that exercise is going to be my miracle drug. And I admit, exercise does help some people. But I can't do what they do, and they just think I'm a party pooper. And when I try to explain, my friend says that she used to have bad periods but they go away if you try. Aghhhh
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Post by Karen on Sept 10, 2010 18:41:13 GMT -5
And when I try to explain, my friend says that she used to have bad periods but they go away if you try. Aghhhh Ahhhhh, yes, we're all just not trying hard enough, that's our problem! I know at one point, one of our members was thinking about writing a book about what it's like to live with endo. I think a lot of people would be surprised what it entails. After all, most of us don't *look* sick. Hang in there. Focus on getting yourself better first, then worry about others!
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Post by Shannon Elizabeth on Sept 10, 2010 18:52:15 GMT -5
You know, I just read an interesting book about black domestics and their employers in the south in like the 40's-60's. And it was all their personal interviews, which finally helped you to see how it really was for THEM. Well I think that would be a great idea for women with Endo. Interview us on what our typical day is like; how much it changes our life and its not just having a bad period...its an actual disease that we have to contend with every single day.
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Post by Karen on Sept 10, 2010 19:53:33 GMT -5
The Help? Is that the book you read? Read it for book club a few months ago, I know what you mean!
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Post by Shannon Elizabeth on Sept 10, 2010 19:59:14 GMT -5
Well I did read the Help. I work at the library and for the almost two years its been out its been a constant success. But this was the book that the Help was based on, Telling Memories Among Southern Women by Susan Tucker. Its nonfiction and actual interviews of the domestics and employers. It was cool to read that after reading the Help and you really saw where the inspiration came from. But I think it would be cool to take that same idea but make it a book about women with Endo.
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Post by Karen on Sept 10, 2010 20:05:57 GMT -5
Ah, that makes sense. And, yes, I see what you're getting at! I believe this member (she shall remain nameless until she's ready to) had a similar idea!
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Post by Shannon Elizabeth on Sept 10, 2010 20:19:42 GMT -5
That's very cool. Its hard to explain to anyone what Endo is really like, but it would be nice just to show those that really do care like our parents, husbands, close friends etc. what we go thru and why we are the way we are sometimes. And show that it isn't just me or you or the next girl...that there are thousands of women out there who are dealing with this. And it might bring to light some things to the doctors out there as well; they can't deny it, there is a need for women who are dealing with Endo
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Post by omaklackey on Sept 10, 2010 23:08:41 GMT -5
This is an amazing idea that I have thought of several times (being a wannabe writer) I just wish that we could find someone to write it that not only had endo but was also an authority. (ie a gynecologist with endo) That would finally sell the idea that this is a life altering horrible disease if it had a 'name' behind it, also a book would help get out the things that do help like diet, PPT and other alternatives that people on the board have had succes with!!
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Post by Shannon Elizabeth on Sept 11, 2010 8:26:03 GMT -5
Mmmm yes that is a problem isn't it. If just you or I wrote the book it would need some pretty hot publicity before it saw readers other than more desperate women with Endo (altho that its becoming a more and more increasing part of the population). Hmmmmm...this is something worth thinking about tho... And I love writing myself.
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Post by Shannon Elizabeth on Sept 12, 2010 15:27:10 GMT -5
Okay so today I did go out with my friends for lunch. Was able to order something nearly wheat, soy, dairy, and meat free...so I didn't get sick afterwards. But then, my friends just INSISTED on going to the diary cuz one had never been. And there was the caramel apple ice cream...taunting me... I didn't get any, but I wanted some so bad And it made me kinda upset because I kept saying over and over and they just downgrade me...agh.
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Post by pretty on Sept 12, 2010 16:02:54 GMT -5
well, you should grin and bear it, and later use it on them like "oh, remember when I went to the dairy with you even though I don't eat ice cream.... well, now YOU'RE GOING WITH ME! to... (wherever) because you want to be my friend etc. etc. lol we know it sometimes works right girl? good luck, it aint easy bein a friend lol
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