I was diagnosed with ET Last year after testing positive for CalR mutation ..
I have always suffered from dizziness and constant fatigues and horrible menstrual cramps but I never knew it was because of my condition.
I had some ups and downs since I was diagnosed but currently am on hydroxyurea and clopidogrel but my platletes count is 900 (even though in the past couple of months hydroxy urea was effective and lowered it to 200 so I don't know why the sudden change)
My life is very difficult right now. I am always in pain and last week I experienced awful episodes of nasuea plus dizziness that I couldn't even concentrate at work and my doctors doesnt seem to have a clue about what is causing them
I have gained around 40 pounds and I can't even stand looking at myself in the mirror and it's hard for me to go on a diet and I can't even exercise because I have degenration in my knee joint. I have gained weight in the past before I was diagnosed but I always managed to diet and lose the extra weight although it was very hard with my constant fatigue.
I am only 24 and I just graduated and started a new job. sometimes I think about giving up on having a career due to the awful pain and discomfort am always in.
I am afraid that I will be considered a weak person who is using his not serious condition as an excuse to be lazy and fat.
My friends and family are very supportive but they always say stuff like "u should be gratefull u don't have a serious cancer and stop being negative and live" which I tried to do but some days are just too hard.
sorry for the long post