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Starting 17th year with ET. What's ahead?

Blood Cancers & Disorders | Last Active: Jan 19 4:08pm | Replies (52)
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@nohrt4me

Thanks for staying on topic, anyway. Lots of folks on these threads who have been dealing with ET for only a short time, and either want reassurance that everything is fine or to talk about how well they're doing.

Yes, I do feel I am losing ground with my health overall, but clearly this is the wrong forum for airing it.

So going to take a break from here and look for other ways to address my issues.

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Replies to "Thanks for staying on topic, anyway. Lots of folks on these threads who have been dealing..."
janemc | @janemc | Jan 14 7:26am

THANK YOU for the help you gave me when I was in shock from the diagnosis.

You're right, that is the crisis that brings most of us here.

But then comes the next challenge -- OK, I've got this AND I have to live with it until I die?

I haven't been really happy about anything since I was diagnosed in October 2024. I get through my chores and don't have any spark left for fun.

I'm just a few months into this! You have been carrying the burden for 17 years.

Please find something that gives you joy. Know your posts have meant the world to lots of us.

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Lori, Volunteer Mentor | @loribmt | Jan 14 9:18am

Good morning, @nohrt4me I hope you won’t take too long of a break! ☺️ I think I can speak for all of us in the group with how much we truly value you sharing your life experiences with ET and well, just life!

I’ve said it before here in Connect, but I like to think of us all sitting around a kitchen table having our morning beverages, snacking on coffee cake, hashing out the good, the bad and the ugly of whatever life is tossing at us. I grew up with my mom, auntie and grammy talking about everything under the sun around that table... Some days it was nothing but whining and blue smoke. LOL. Other days, there’d be resolution or commiseration or a 3 tissue box discussion over loss. And just like the kitchen table the conversations in some of the discussions do veer off topic.

I know you are hoping to get responses from other ‘members who have ET with the CALR mutations and the impact long term. To get a better understanding on the potential progression of the disease. Give it time, they will find you.
In the meantime, this discussion, even though it zigs and zags, is valuable to the other members who maybe are new to the site or to ET and will appreciate the openness, honesty and vulnerability of the conversations here.

I hope you’ll rejoin the table soon…I’ll bring the coffee cake. ☺️

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