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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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10-19-2023, 01:52 AM
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So moments of honesty finally with Daughter. As I am balled up in pain from Pleurisy and even cried begging her to use her Voice with Doctors to MOVE my case along. She replied if you promise you won’t get angry at me. I said but don’t you see that I am scared when my breathing is so bad. And yes it can come out as Anger. It is so hard to keep my self safe when my body is failing in new ways regularly. I had my Paster tell me once he never saw someone so patient after he watched me not miss a beat as my young daughter broke my watch clasp and I caught it before it fell to the floor while we were talking to him. Actually I have become scared of my daughters and it feels awful. I think some of their anger is fear too. Fear of losing their last living parent. So daughter did call and Mychart a message to my pulmonologist and the calls came early the next morning. Sculptor 44
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| "Thanks for this!" says: | Lara (10-21-2023) |
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10-21-2023, 05:03 PM
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It's a few days later so I'm hoping you're feeling a little better today???
These are really important feelings that you've written here Sculptor. I too notice people see anger or frustration instead of the pain or other reasons behind it. It happens all the time. Scared can look like anger. Pain can make us angry and pain can make us scared. I also think that a lot of our feeling scared and sounding "angry" to others is because it's such a very difficult place to be when we lose our independence and now need to rely on others more who perhaps may not always have the force or skills to move ahead the same as we would have. All these years, to me, you have seemed such a strong person. When your daughters see you in pain and unable to navigate the system as you could in the past, then they probably get scared too. I know my daughter tries to help, but there's a fine line. She's intuitive, so knows when to just let me be but sometimes she forgets and comes across a little "bossy" and you know, it's hard being older now and sick when you were always the one who held everyone together. It truly is hard and I feel for you and understand. I just hope that someone gets you some medical attention as you need it. I know my daughter is scared of losing me and we've done everything together now for so long ever since she came back home after university and living in the world for a while. It's BIG worries for her. Bigger than big. Bigger than her world can bear but most of the time she keeps it all tempered and balanced so I don't worry too much and get sicker. I must say though that I wouldn't be here today without her, she's such a blessing. |
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10-25-2023, 09:55 AM
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I am alone too much so thank you for kind words. Seems I may have been assigned new Neurologist which my Pulmonologist suggested in recent Televisit. And a friend is trying to get to ER. ALOT Going on. Can share more later. Sculptor 44
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