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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 11 hours ago | Replies (591)Comment receiving replies
@jodyjazz
Yes, or they tell you how you don't really have a serious condition (like they KNOW) because it's not like cancer, and you can just take that HU, after all, they are on cholesterol meds for life, so that 's sort of the same....., like, what's the big deal. Etc.
So, yes, being able to talk about everything related to your disease/condition/experiences without being dismissed is huge. Learning how others managed this that and the other is huge. And no longer feeling alone with it is huge also! Glad you checked in here.
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@gigi05
Actually I don't talk to anyone about it. Friends and family know I have something weird and I take a chemo pill for it..............I'm sure that is all they could say.
I did not do my "go down the rabbit hole thing" I usually do-- about the HU. I just figured if I had to take it, I would just do so and not quibble. Although quibbled to my hematologist for months before agreeing to take it. After getting on here I see how debilitating the disease and/or the medicine can be. I thought I just had an age spurt!! Which I may well have had :-0)