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Although I am very good at this time, when I was dx and when I was very sick it was a relief to finally have a dx. For the first couple of days it was hard, then I thought of our son. Better me than him. Also I never forget that although what I have isn't great, we can get a disease/condition that is so much worse. I think of the woman I know of that at 28 yrs of age, married with two little ones (2 & 3) started getting headaches a week before Christmas. She died 3 weeks later of a brain tumor. She didn't have a fighting chance, her disease took her and quickly. I know that they are making huge strides forward in treatment, drugs, research and hopefully in the near future being able to at least put our marrow failures into a chronic stage for many of us. So many people are now living much longer and with a high quality of life than just a few years ago.
As for being an advocate, becoming as educated as you can be about your disease and treatments is best, imo. Being able to question your doctor and demand detailed answers along with getting a second or third opionion if you need too.
That is what works for me.
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