"Why does every appointment eventually turn into questioning the only people who truly understand my illness, have sacrificed everything for me, & whom I feel incredibly lucky to have as my parents?” -
Today my daughter turned 18. I wrote this article with a sense of relief, while still carrying all the trauma on my back.
"When Doctors Suspect the Parent Instead of the Disease: Parents Silenced Under Threat"
open.substack.com/pub/neurolog...
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"Many chronically ill patients no longer fear only their disease. They fear the healthcare system itself after years of dismissal, disbelief, humiliation, & abandonment" -
@neurologistmom.bsky.social 🙏
open.substack.com/pub/neurolog...
I read @neurologistmom.bsky.social substack post this morning in my email and it made me feel so seen.
The cPTSD involved in seeking treatment is unacceptable.
Raise your hand if you have Iatrogenic PTSD. 🙋♀️
I now have to take Xanax to go to any medical appointment, or my blood pressure shoots up to stroke range and the doctors freak out. My BP is otherwise normal, but I take two BP meds due to this issue.
Thank you, Sarah. I think of you and dear Maeve often. 🙏🏻
Doc: “A kid can tell you, ‘I can’t breathe, I can’t breathe.’ How do I know she’s not having an anxiety attack?”
Kid: “Mom, it’s not anxiety.”
Mom: “I know, baby. I know.”
Beata did everything she could for her child, but she couldn’t make it. 😔
Please watch Take Care of Maya.
#MedicalHarm
Yesterday, during a conversation with my dentist friend she told me that one of her patients developed encephalitis after a routine dental procedure last month It was the first such case she had seen in her 30 years of practice I told her that our immune systems are not what they used to be anymore⬇️
Dormant herpes viruses seem increasingly prone to causing serious problems, and in some cases, it may be safer to start valacyclovir for a few days as a precaution. We are simply not what we used to be anymore.