Essential Thrombocythemia: Making treatment decisions

I also have et, ido take hydrea,my side effect is feeling very tired ,and slowly down in myself

The doctor said I was low risk. Even so I am terrified of having a stroke or any type of Cardiovascular event. I can’t be under the constant worry and stress. This was the first time I saw this doctor. The one I had seen prior had retired. But I remember him telling me that once my platelets were over 1 million I would need to come back in and get medication or if I had any type of cardiovascular event or stroke I don’t want to have to wait that long in order to be put on some kind of medication, I figured it’d be a lot worse because, I would have to take other medication as well

I felt down on myself too (and still do sometimes) but then I heard from Lori the mentor on this site about how while yes life is different now, it’s still going and we can embrace that. She went through leukemia and has come out strong. We can take our meds, eat healthy, try our best to stay active and ideally have a great supporting family/friend base. For me (what has worked) is I take ~30 minutes every day and lay down with headphones, listen to my favorite music and just “breathe” while focusing on being positive. this restorative time has helped keep my energy up the rest of the day. May not work for everyone but I was inspired by Lori’s advice.

Does anyone know if there is a correlation between ET and gluten sensitivity?

I do old lady chair yoga 30 minutes just about every day. Breathing exercises + mobility work helps reset my attitude. I try to sit outdoors on my porch for at least 30 minutes even in Michigan winter and just look around, no screens or distractions. My son bought me a little bird watching notebook, and that gives me a focus. (I have two kinds of woodpeckers and saw a bald eagle yesterday!) I also knit. Doing something with your hands that turns into something useful is helpful.

I do struggle with not being able to express sadness and frustration occasionally, and I do think that Americans are not particularly easy on people with chronic medical conditions. We'll rush in in a crisis, but we are not as empathetic to people who don't "get better." I get, "You don't look sick," and "You should be glad you don't have XYZ." The isolation that comes with "sucking it up" can be a bit hard.

PS, Not a music fan, but I read a lot! A friend is in a book club for stroke patients, and I always thought that would be great for those with chronic blood cancers.

I would say yes although I don’t know and no doctor would confirm but that is how I discovered I had ET. Dreadful stomach pains and nausea, many scans and tests and no one knew what was wrong. My homeopath tested me and told me I was gluten intolerant. So cut out gluten and felt great. But still no answer on high platelets had to pay private for a diagnosis. I am now also intolerant to dairy. I have read that having ET makes our bodies less able to process gluten and diary. Hope this helps.

I felt down on myself too (and still do sometimes) but then I heard from Lori the mentor on this site about how while yes life is different now, it’s still going and we can embrace that. She went through leukemia and has come out strong. We can take our meds, eat healthy, try our best to stay active and ideally have a great supporting family/friend base. For me (what has worked) is I take ~30 minutes every day and lay down with headphones, listen to my favorite music and just “breathe” while focusing on being positive. this restorative time has helped keep my energy up the rest of the day. May not work for everyone but I was inspired by Lori’s advice.