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Essential Thrombocythemia: Looking for information and support

Blood Cancers & Disorders | Last Active: Nov 4 11:06am | Replies (597)
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@mlmk0601

Totally agree! The lack of empathy is unreal. We look ok so they just to not understand that even though I’m making the best and moving with my life, I do have a chronic gremlin hanging over me. I hear more about their day to day ailments like headaches, muscles aches, etc. when I say something I get oh be happy the hydroxyurea (that I just started taking ) is slowly moving my platelets down. I’m not a complainer but just basic acknowledgement that I’m going thru something bigger than a bread box would be nice just not being dismissed 🤪.

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Replies to "Totally agree! The lack of empathy is unreal. We look ok so they just to not..."
janemc | @janemc | Apr 5 9:07am

This is the only place I feel understood.

Alas, our "chronic gremlin" is invisible to everyone else.

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nohrt4me | @nohrt4me | Apr 5 10:43am

Haha, I love the "you don't look sick" line. People seem to think that because I seem perky and normal at 1 pm, I can last until midnight. Nope, I'll give you until 6 pm, max, and then I'm going home to crash because my brain is exhausted, I've got the chills or sweats, and I have to will myself just to get out of a chair.

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kik1 | @kik1 | Apr 5 12:51pm

I totally agree! As long as you are moving around people forgot your disease. I’m 56 and people think all is well since I do not complain. I only been on the Droxia 400 mg. The doctor said everyday but everything was dropping. He mention 200 mg so that why I am taking the 400 mg every other day. I work remote and take my medicine at 6pm. I found I’m not as sleepy through out the day.
I go back for my check up on the 18th of April. I will let the doctor now what I’m doing.
I don’t recommend anyone to make up their own schedule like me. I just have a different process for myself. I discuss it with my husband and 3 grown children after my research.
Just try to affirm yourself daily and do something that gives your heart joy!!!

I found out I had ET with J mutation by doing my yearly physical exam. No proof but it was always around 300 until the COVID shoots.

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