Yep, I am a newbie, to this site. We don't have enough support in this. In my life no one wants to talk about it and if they do listen they say "oh, your ok as long as you do as the drs say or you can get up and do things for yourself' umm, I know all that. I get scared sometimes and need support not tell like that. I know they are trying to be helpful.
I have had ET since 2005 since the dx, most likely longer had it. I went thru blood work to where the nurse said oh don't worry about it. What!!!!! anyone who says that raises red flags now with me. I had a bone marrow, x-rays etc. Now since 2005 I have been going every month for blood work n Dr. My platelet count goes up and down. I take hydrea 500mg 2twice a day. Side affect, nauseas a lot, I forget a lot lately. Its a what I call" the loner " meaning you can feel so alone in this ET.Maybe some of you are fortunate to have someone in your lives that give support and that is awesome. I had a hubby who passed away 5yrs ago and 3 children (adults) 1 who is mentally chanllenged who is at a 3 yrs old level. I am a fighter but its been hard of late and really need support. Nothing here where I live or the hospital has any support group for this ET. Oh yea I am double nickel age lol..55 yrs old..thanks for listening
a fellow ET
y247y y247y
4 Responses Jan 10, 2013

I live in california..i am 56yrs old :) I used to get lightheaded..not no more..I do the healthy things too..but i am just so freakn tired..i am thankfully i am here and able body..i just need support..

What state do you live in? I have had similar experiences, but have been diagnosed for a few months. I try to do yoga daily and take vitamin supplements to keep my body as healthy as possible. I also get up each day (if I forget I do it at night) and do a gratitude journal. I think of 12 things or so to be grateful about. Walking my dog. A good book. Music to listen to. A comfortable bed., and so on. I also agree that it is important to get support. Do you get light headed. I am a young 65 Years old woman :).

My brother is a doctor and claims he has had many patients with ET. I try to stay positive and find as much joy as I can. Exercise and healthy eating helps. I do yoga daily and walk my dog. I remind myself that appreciating beautiful plants, the sun rising each day and my family helps.

ooh i have done that n off n on do that..but when no one can relate..its freakn hard..I have no family but my 3 kids an they dont want to really hear me due to their dads passing (unknown the what really happened on his passing) i do therapy etc..but rite now i am at a low flow..fightin but i feel so alone..an thats whats making it hard..my heart n feelings as a human hurt to the extreme. but it feels like iam losing but still fighting..its is freakn draining me..purpose..i dont know..just want to be happy..an just cant..i cry so much inside..an such a actress on the outside..i just dont know..................................................................................

ty for the ones that do post..it helps some...i am just so tired...

My doctor says he has had many patients with ET also, yet it is a supposedly uncommon disorder. I am 65, and was diagnosed in July of 2013.

hi i feel the same people say keep going to checkups and you will be fine but i dont feel that way.i try and put it out my mind as some days can be very hard .im on hydroxyurea as well hope you are feeling better x