Newly diagnosed with MGUS

This is beautiful. You guys are just so well spoken and add calmness to my ever crazy mind! I thank you so much!!!

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I have to go in and check or get alerts through email. Be good to hear how others get alerts?

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Hi @Clovy14, my husband goes round with his head in the sand and won’t discuss my CLL and definitely not feelings, that is just how he is, I don’t think I will change him now.
I have also found some people who will say it will be fine, you will be OK or the one that really gets to me is ‘oh, you do look well’ when I feel really yukky emotionally and physically inside. I think it makes them feel better.
That is why I need people that I know will understand my crazy thoughts on our forum.
@Nichola75, I have to come in to this site to see posts or I get alerts in my emails too.

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I must say - my husbands pretty good. He doesn’t talk about it much at all, but he did attend a counselling session with me which really made me understand a little more about how he copes with it all and how he feels. He is also really good at calming me down when I’m in panic mode!
I think people feel that they are saying the right thing @Erica. Being anything other than positive - however unrealistic that is - would be difficult for them. However, it is sometimes the conversations we need to help us.

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@Clovy14 and @Nichola75 just to answer your questions around alerts to conversations - it may have something to do with your preferences towards the end of the page. Scroll down to just below Add comment and you’ll see a drop down list saying Muted/Normal/Tracking/Watching. Hope that helps!

Hope you’re feeling okay @Clovy14!

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Yes thanks! That did help lol… I always see a bunch of replies and they are always days old … trying to keep on track! I look forward to reading these. I (technically) feel ok- other than anxiety.

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Ya I get it. People ARE trying to be nice and I get it. I just know people DO get shitty diagnosis everyday so just because I’m a friend or to them it seems unlikely due to age etc- it DOES happen. It’s all very frustrating. Hard to go thru in ones own head.

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Glad that helped! It can be quite tricky to get your head around forums at first I always think. There’s never any rush or pressure at all to respond though!! :slight_smile: Really glad you’re feeling ok.

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Great! Changed preferences x

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