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Guilt
Nov 29, 2011 22:37:29 GMT -5
Post by samiam on Nov 29, 2011 22:37:29 GMT -5
Hey ladies- I've been having a hard time lately dealing and preparing for yet another surgery. So so many thoughts swirling around in my head. Will this time be worse than last time? Will the doctor finally tell me hysterectomy is inevitable? Will we be able to conceive later if we should choose to? I don't want to let everyone know how utterly freaked out I am. I just feel like screaming at the top of my lungs! When my mom found out I had to have another surgery, her eyes welled up with tears. My husband looked equally upset and it just breaks my heart. I mean, I am truly blessed. I have a wonderful support system, but I just absolutely hate that I'm putting the ones I love more than anyone else on this earth through so much stress. I know in my heart that I have absolutely no control over what is happening. I can't change my genetics or the cards I've been dealt. And I am really trying to keep a positive attitude about it. My faith is really helping me through. I know things could be much worse! But there are just some days when I feel so guilty for being sick. I think as women we always feel we have to be the strong ones, and I've always felt I've had to take care of everyone else. Now, I'm the one that needs help, and it's hard. Has anyone else ever felt this sort of guilt, and if so, how do you deal with it?
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Guilt
Nov 30, 2011 7:14:45 GMT -5
Post by semicolon on Nov 30, 2011 7:14:45 GMT -5
I have had three surgeries this year, and I found telling people I was having another surgery the hardest thing to do- it's made me cry (usually after the fact). Some people who really care about you take it to heart and worry for you, and it breaks your heart. Fortunately my husband and I try to approach everything with humor and roll with whatever comes. We named my colon Vito before my resection so we could make many Godfather references (then named my endo Michael when I got diagnosed and my husband's pancreas Fredo), and I won I $5 bet with one of my surgeons about my endo on my diaphragm! I try to share these things with my friends and family as a way of letting them know that we are doing ok (my husband had some health stuff too and we live a very healthy lifestyle, so we really made people worry this year!). You don't want people to think you're making light of the situation, since surgery is a big deal, but if you are still trying to live your life as normally as you can they will recognize that.
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Guilt
Nov 30, 2011 7:48:08 GMT -5
Post by JC on Nov 30, 2011 7:48:08 GMT -5
I'm so sorry you feel so bad! I actually very much understand how this feels because I felt terrible telling my family about all my health problems too. I hated making everyone worry over me. Sometimes I think it's harder to be the family member of a sick person than to actually be the sick person. It does feel good to have people that care about you so much though and I think that's a blessing. I like what "semicolon" said about finding humor in it. When I was diagnosed with the tumor on my pancreas I named it George. Giving it a silly name helps people talk about it and cope with it better. So instead of saying, ohh surgery for my tumor (downer), we'd say things like "f**k George! He's an a**hole!" and then we'd all laugh about it. It definitely helped ease the stress and seemed to work extremely well with my guilt toward making my family worry. I hope that this surgery gives you good news and I'm sorry you're so stressed!
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Guilt
Nov 30, 2011 12:38:29 GMT -5
Post by samiam on Nov 30, 2011 12:38:29 GMT -5
That's great about how you guys give different ailments names! ROFL! I love your attitudes! It sucks a whole lot having to go through all this crap, but you might as well make the most of it. And you're both right, it does help your family deal with it come to think of it...My brother came home during the holiday the other day, and was getting ready to go home. He wanted to say bye to me and give me a hug before I went to the general surgeon. Well, lately I've been spending more time on my appearance. It makes me feel better. (My grandmother always said, when you're feeling bad about yourself, put on a pair of dangly earrings and red lipstick, even if you're in your housecoat! lol She said it always makes anything better, and she was so right!)
When I went over to my parents to say bye to him, everyone commented that I looked nice. I said, "well, if a I have to go get my rear probed by a perfect stranger yet again, I might as well look fabulous!" They all laughed and laughed. It really helped to stop the nerves. So, now I have to think of a name for my endo and another for my pcos....hmmm so many possibilities! lol What a fantastic way to deal with it, rather than being down in the dumps! Thanks again! ;D
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Guilt
Nov 30, 2011 14:09:05 GMT -5
Post by JC on Nov 30, 2011 14:09:05 GMT -5
HAHA yeah being violated again! UGHH!!! I like old people names like Eunice and Martha. LOL!!!
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Guilt
Nov 30, 2011 16:49:44 GMT -5
Post by samiam on Nov 30, 2011 16:49:44 GMT -5
LOL! Those are good ones! My husband suggested Luke and Lea, LOL after Star Wars, we're both geeks at heart I guess!
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Guilt
Nov 30, 2011 17:08:31 GMT -5
Post by 1234 on Nov 30, 2011 17:08:31 GMT -5
I struggle with this too--it's so hard to have people worry about you and want to fix things. I think many of us get to a point where we realize only so much is fixable, and the rest we have to live with, so the best we can do is keep trying to be as healthy/painfree as possible and accept the rest with a resiliency, humor, and a real love of life. But it makes sense our friends/family don't get to this same point, right away--they aren't the ones dealing with the daily experience of pain and other symptoms, and (at least in my experience) reinterpret the acceptance as giving up, or think we haven't made all the choices we could have... The thing is, even when it's our health, everyone connected to us has his or her own journey to make in dealing with it.
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Guilt
Nov 30, 2011 17:49:11 GMT -5
Post by semicolon on Nov 30, 2011 17:49:11 GMT -5
We made Vito (the colon) an offer he couldn't refuse (a resection), then discovered Michael Corleone (the endo) was really in charge. My husband got diagnosed with type I diabetes so his pancreas will eventually stop working, aka Fredo will be off'ed in that ill fated fishing trip. There was a Godfather marathon on right before my surgery, then a Rocky marathon for one of my recoveries, it was meant to be!!
We do make a lot of jokes, but it's still hard when people ask how I am and if I am done with sugeries, and I can't tell them "yes, I'm totally fixed!". Instead I say "I'm better than I was" but I think it disappoints them.
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Guilt
Nov 30, 2011 18:15:16 GMT -5
Post by samiam on Nov 30, 2011 18:15:16 GMT -5
HAHA, gotta love AMC movie marathons, semicolon! I love the line in one of the Rockey movies when Mickey says "GET UP you SOB, cause mickey loves you, okay!" ;D
Yeah, I saw on one of the other posts about things that you "don't say to a girl with endo" (I'm paraphrasing here) and someone said they hate it when people say "I thought you'd fixed that!" or my personal favorite is..." Isn't there SOMETHING THEY can do to fix you?" But when loved ones say things like that, it's guess it's like you say rustmyrtle, it's just their journey in dealing with the stress of the illness and it's their way of showing their love for me. And, I guess the best we can do is keep our chin up as much as possible and make the most of good days. And too, I remember what everyone in my family has done to help me through and I always tell them, I won't forget it. I will do my very best to be there come h*ll or high water for them if they ever get sick.
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Guilt
Nov 30, 2011 18:56:11 GMT -5
Post by Karen on Nov 30, 2011 18:56:11 GMT -5
I think one of the hardest things for me about endo and other health issues is that people don't understand it's not just cut and dry. I have to be honest, before I had seemingly perfect health and have to admit I thought one of my good friend's problems were all in her head because that's what we're trained as a society to think when doctors tell someone 'everything is fine'. But now I know that's not true (and am super supportive of my friend and helping her uncover her issues). But, man, having to admit to someone else that a surgery/med/etc. didn't fix things and you're going back for another try is hard news to deliver.
I guess what I'm trying to say is that I can sympathize, but I don't know if I'd quite label it as guilt. For me, I think it's more disappointment, both by me and by others. And for some reason, disappointment to me always correlates to shame of some sort - shame that I didn't do __ to prevent it, shame that I'm not able to take control of things, etc.
Sorry, I'm rambling!
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Guilt
Dec 2, 2011 19:34:59 GMT -5
Post by samiam on Dec 2, 2011 19:34:59 GMT -5
Sorry it took me a bit to answer back to the last reply, but I've had a couple of doctors appointments the past couple days. I just wanted to say thanks again for the support of everyone, and laughs!
And Karen, you're not rambling at all! I understand what you mean about being disappointed. It is disappointing. In fact, that's what my doctor recently said is the worst part of this disease is grasping at straws for any relief we can find, and then some doctor promises us the moon and the endo comes back full force. That's why he's says he's reluctant when any doctor claims he can "cure" endo, even with excision surgery. He says the best he can do is get all the endo he can with excision, and the help of a general surgeon and then hope for the best outcome possiblewith continued treatment and diet. He says we all have some sort of limitations, either emotionally or physically, and that's ok. He's sort of a gyno/shrink lol, but I am very grateful to him for his insight. His wife has dealt with infertility for years and it has given him a real compassion. But he's right though, we all expect so much of ourselves, especially as women. Our heads are always swirling around with all kinds of worries and anxiety. But, after all, we are only human, I just have to remind myself of that sometimes.
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