I was really hesitant about writing this story here because I didn't wanna depress anyone and also because the only two posts I have posted here weren't really that motivational. They were mostly about how my meds are not working so to anyone who is not in a good place right now please don't ready this story.
So I have been diagnosed with ET (CalR) about 3 years ago shortly after I graduated from college. During this phase I was in a start of a wonderful relationship with the man I can safely call now the love of my life. He was very supportive and loving all the time I was struggling with the exessive fatigue and the frustration from the side effects or from the meds not working. Also, during these 3 years I started a good job that is suitable for me and was really successful at it and managed to not let ET interfere with it for the most part. The most hard part was me gaining a lot of weight that I can't lose till now because I have anemia so any training makes me kind of weak and dizzy and it has been hard to go on a diet and also, I am kind of lazy.
About a couple of months ago my boyfriend and I wanted to get married and we are both Egyptians who live in Egypt and the tradition here is that the only way we can be together and live together is through marriage and the process of marriage heavily involves our families and we must get their approval and support to be able to take this step. My boyfriend's father has always been critical of me even though he only met me once and doesn't really know anything about me. When we decided that he will finally tell him that he wants to marry me he firmly said no and he listed his reasons which were that am to ugly and fat that he can't stand to look at me or be seen in public with me (he said those exact words), I am the same age as him and finally that I am ill and I will make his life miserable being always sick in the future and drag him around in hospitals and I won't be able to have children.
He is having a hard time convincing him that it's his own life he should marry the one suitable for him not his father and it's been hell for both of us going through all of this abuse from him. When he finally agreed to negotiate he said that he will forget the first 2 reasons but he can't with the third one and that we have to prove to him that am totally healthy and cured not managed and if there's a 1% chance that I will get seriously ill in the future he is out and of course we can't give him that because there is no cure for MPN.
The cherry on top was that his father told him a couple of days ago that he asked a doctor about my condition and told him there is a chance she will develop leukemia in the future and now he doesn't want to argue anymore and gave his final no.
I can barely leave the bed right now. I cry all the time and I am distracted at work and it feels like my life is falling apart knowing that I will lose the one I love the most because a condition I have no control over and didn't ask for and life feels really unfair right now.
Sorry for the depressing long post. I really needed to share it since I can't talk about all of this with my family but I saved some good news for last; my condition actually is kind of stable right now and my platlets went down to 596 and my Hemoglobin up to 10.
All the love to everyone.