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Rachelle1
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Member Since May 2019
Location: Europe
Posts: 26
4
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Default Jun 02, 2019 at 12:38 PM
  #29
I received some very unfortunate news with regard to my disease the past week, twice. I can not say too much about this out of fear to be recognized, but usually bad news means drastic life changing developments in my disease.
I told family about this news: just very brief without much words.. The only response I get is "Why do you tell me this? What can I do with this? You should be telling your doctor, I can do nothing with this. I don't know why you tell me this. You should be doing something about this yourself, but there is nothing you want to do about this." (NB: I'm under the care of my doctors/specialists that I see regularly).
On the other hand: the moment their first grandchild lets a burb my mother is jumping from joy and showing it to the world. And the moment she fears he may experience some discomfort because he cries, she is surfing over the internet in panic, advising what doctors to see, and can't stop talking about it.
Don't get me wrong: I am happy they love their first grandchild. I am happy he will be growing up surrounded by love, also from his grandparents. He is small and vulnerable, and deserves and needs to be surrounded by much love and care.

But I can't help but feel so incredibly hurt at the same time. I hate how my body is breaking down. I hate I can't turn my back to my family and disappear for good out of their lives because of this disease. I hate my life. And these are the moments I miss my specialist/doctor the most. I would do anything for a hug from him now. I have him on a social media platform that we once used to communicate. And sometimes I just take a look only to see when he was last online. Just to know he is somewhere out there, when I feel so isolated. How can I think with how I attached to him (as I did to these other male authoritarian figures in the past) that he is the one to blame?
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