Hi, my name is Mana.
I've got Dress Syndrome, and I'm deaf. That's just my reality. It's not always easy, but I'm making it work.
My immune system goes into overdrive when I take most medications, including pills.
It's like my body is constantly on high alert, ready to fight off anything it perceives as a threat. This means I have to be very careful about what medications I take, and I often have to find alternative treatments because I always get a bad reaction to most medications.Being deaf is also a big part of my life. I've learned to adapt and find ways to communicate with others. I also wear a hearing aid, which helps me hear the sounds around me; it's amazing how much of a difference it makes.
One of the hardest things about living with Dress Syndrome and being deaf is the feeling of being disconnected from the world around me. Simple things like ordering food at a restaurant can be really challenging. I always have to be careful about what I eat so I can avoid getting sick. To make things even tougher, my body often rejects the medicine I need. But I've learned to be patient and advocate for myself.
Despite the challenges, I've learned to navigate the world in my own way. I've found ways to manage my symptoms and live a fulfilling life. I'm sharing my story because I think it's helpful to be open about what we're going through. We've all got our own stuff to deal with, and talking about it can really help support each other.
That's my story. It's not always easy, but it's mine, and I'm learning to live with it.
Sincerely,
Mana W Rothstein
Comments