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As for not bringing up fibromyalgia with your doctors sooner, I believe people deal with what they can when they can.

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How have you been doing? Have you had a chance to find that Edward Gorey book?

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IBS-wise I'm doing well - my tummy is settling back into stability, thank goodness. Unfortunately, I've done "something" to my leg, so I've been somewhat house-bound. Finally saw a specialist about it today - he thinks it's just a pulled/strained/generally cranky muscle, so it's going to be mega-Motrin and physical therapy for a while. Anyhow, long explanation for why I haven't been out book-shopping. Although it's funny - I found myself thinking about the Gorey book this afternoon. Perhaps there's something about X-rays that makes me think of Gorey.

Thanks for asking.

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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]

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I really need to do this too, Maria. I think I'm just not mentally ready for another syndrome either. I'm still working on the IBS one!

Good for you for being brave enough to do it! I hope you don't have it, though. But if you do, there are many intelligent folks on here to help you cope!

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Nothing is wrong with me except I feel bad and my doctors look at me and say, "You're perfectly healthy." I know a lot of you understand.

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I don't know what I need right now or what I should do. I'm afraid I'll have to quit my job if I continue on this path and I'm already feeling like a failure. Sorry to be such a drag. I'll make sure to post on the "What I'm Thankful For" thread to balance this out.

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Thank you, Nelly, for this great response. I read it last night and it was something I really needed to hear. If you had told me that in person I would have given you a big kiss on the forehead.

Instead, I managed a stiff little jig of joy. I just was so happy to hear that I have support, that you're finally finding what you need, that you and Mel get to share such a marvelous doctor, and that you have a good feeling about me and getting a diagnosis.

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What's terrifying is that I might get well and have to live out the rest of my life as a different person. Getting well is actually an option for my future now. Getting the diagnosis is so far behind me, and it was yesterday. It's so weird.

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Terrifying yet exciting! It blows my mind trying to imagine what life would be like without these disorders/conditions.

I'll be sure to update once I see my doc!


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I think you explained your feelings very well and if I'm understanding you correctly, I think what you're feeling is pretty common. People with serious or debilitating illnesses often seem to feel they have failed in some way, either by getting sick in the first place or by being unable to carry on as normal once they are sick. When I was diagnosed with breast cancer, I apologized for not taking better care of myself. Insane in retrospect, but I've since read that such an apology is not uncommon. I wasn't aware that you had breast cancer. I'm not sure how much you are comfortable talking about it, but I hope you're doing well now. I understand that need to apologize, take responsibility for being sick, and you're right - it is a strange reaction and I wonder why we do that?

I imagine the problem would be exacerbated by not having a diagnosis. Yep. This past week, just letting myself think that I might have fibro, I've felt a lot better, more at peace with myself. Again, this is something else I don't understand, except that it gives me some control back. Instead of saying, "I don't know," I might actually be able to give an answer when asked why I'm tired/sore/stiff, etc.

Beyond my wrong actions, of course, there were always my wrong thoughts and feelings. When I was undergoing treatment, there was still some reference in alternative treatment approaches to negative thoughts or repressed feelings causing cancer, but the main emphasis was on thinking and feeling correctly to get better. Reading about this approach caused me a fair amount of guilt and anguish even with a firm diagnosis; an array of great doctors; and a clear understanding of the disease process, the standard treatment, and the probable prognosis. With none of those, I imagine the suggestion that illness is a result of bad thinking and worse feeling would have even more power to induce guilt. I'm constantly told to think positively. I don't feel guilty when I have negative thoughts, but I feel disappointed and foolish when I'm being positive and upbeat and still feel bad. I believe placing so much importance on such things is mostly superstition and is mostly done so people around you don't feel bad/guilty.

I'm not sure why this happens for other people, but for me it was a control issue. If I had somehow done something to make myself sick, then I was still in control of my life. On the other hand, if my illness "just happened", then I wasn't at fault, but I also wasn't in control. Oh, control is definitely an issue for me too! Lol. I always want to find an answer/cause and solve the problem. I always want evidence, logical conclusions, etc, which is pretty obvious when you see some of my replies on the IBS Diet board.

Realizing the importance of the control issue was helpful in learning not to beat myself up. Another helpful realization was that if my experiences had happened to someone else, to a friend, I would never have thought she was a failure. And if she told me that's how she was thinking about herself, I'd tell her she was way off base. Sand, you're brilliant! Thank you for your answer and for reminding me that I need to be treating myself as I would a friend. I do need to relax when it comes to issues of control, expectations, and acceptance. I really appreciate having you on the boards and respect what you have to say. "With all the rubbish people keep sticking in my head, it's a wonder that there's room for my brain." (Spike, Lies My Parents Told Me)

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I wasn't aware that you had breast cancer. I'm not sure how much you are comfortable talking about it, but I hope you're doing well now. I understand that need to apologize, take responsibility for being sick, and you're right - it is a strange reaction and I wonder why we do that? I'm doing very well now, thank you - Memorial Day Weekend this year will be 7 years since my last round of mainstream treatment. Heather or no Heather, we open a bottle of champagne every year.

I imagine the problem would be exacerbated by not having a diagnosis. Yep. This past week, just letting myself think that I might have fibro, I've felt a lot better, more at peace with myself. Again, this is something else I don't understand, except that it gives me some control back. Instead of saying, "I don't know," I might actually be able to give an answer when asked why I'm tired/sore/stiff, etc. It will be good for you to have a diagnosis. And, in the best of all possible worlds, I hope that diagnosis turns out to be something easily fixable - say, a rare condition resulting from a shortage of Vitamin Q3.

I'm constantly told to think positively. Easier said than done when you feel so ill. I don't feel guilty when I have negative thoughts, but I feel disappointed and foolish when I'm being positive and upbeat and still feel bad. I believe placing so much importance on such things is mostly superstition and is mostly done so people around you don't feel bad/guilty. Superstition. Want an interesting word/concept. I'd never thought about it that way. As for not wanting others around you to feel bad/guilty, oh, yeah, I understand that.

Oh, control is definitely an issue for me too! Lol. I always want to find an answer/cause and solve the problem. I always want evidence, logical conclusions, etc, which is pretty obvious when you see some of my replies on the IBS Diet board. Yes, I do see that in your Diet Board replies and I think it's a great trait, especially when combined with compassion as it it in you. Being somewhat (ahem) that way myself, it's hard to accept that sometimes there's no answer and sometimes even when there is an answer, it doesn't lead to a problem being fixed. I'm not terribly religious, but I remember reading something once that has always stuck with me: God always answers our prayers. It's just that, sometimes, the answer is "No".

Realizing the importance of the control issue was helpful in learning not to beat myself up. Another helpful realization was that if my experiences had happened to someone else, to a friend, I would never have thought she was a failure. And if she told me that's how she was thinking about herself, I'd tell her she was way off base. Sand, you're brilliant! Well, I've told people repeatedly that Maria will always give people the straight story, so, if you insist... Thank you for your answer and for reminding me that I need to be treating myself as I would a friend. I do need to relax when it comes to issues of control, expectations, and acceptance. Something else that's easier said than done, but definitely worth attempting, in my opinion. I really appreciate having you on the boards and respect what you have to say. Thanks, Maria. I feel exactly the same way about you. "With all the rubbish people keep sticking in my head, it's a wonder that there's room for my brain." (Spike, Lies My Parents Told Me) Great quote!

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