LabradorsRule
Member
- Joined
- Sep 29, 2017
- Messages
- 12
- Reason
- Other
- Diagnosis
- 09/2017
- Country
- US
- State
- MD
- City
- Small Town
Neurology is a very fine field of diagnosis. My respects to the those in the field. My actual diagnosis is HIV Associated Vacuolar Myelopathy. It runs nearly the same course of ALS, but is a bit faster. It's been over three decades of being HIV positive. I held fast and hard in keeping my health together. I was blindsided by this diagnosis. It was confirmed.
It's been a crazy ride, but I had a good life. Being so rare and so fast, I don't really feel I have any support (not to mention the sociological). I'm fortunate to be a veteran and do have benefits that may help me. I'm working on that now through the Paralyzed Veterans of America. It's not over until it's over. I'm trying hard to keep a positive attitude.
My speech, swallowing, urination and other issue are the worst. I don't have neuropathy, but I do have significant neurological manifestations. Pain consumes me.
I feel very alone, but I can only imagine how many people feel the same.
Being a typecast person is very hard. I not only have to work through the system of medicine, but I have to work through the systemic hatred of simply being HIV positive. People with ALS get empathy, I get judged. It's a different world altogether. I'm not allowed to talk about it. It bottles me up.
I didn't choose any of this. I'll be hated no matter what and will struggle twice as hard to get things handled. All I want is to die peacefully. I have empathy and sympathy for anyone going through what we do.
Sometimes I feel I will have to kill myself before someone else does. I don't know what to do. Somehow others feel it is their duly responsibility to make my life harder because they prejudge me. I don't know what I am going to do. I don't want to suffer any more.
I want to go home. I just want to die.
It's been a crazy ride, but I had a good life. Being so rare and so fast, I don't really feel I have any support (not to mention the sociological). I'm fortunate to be a veteran and do have benefits that may help me. I'm working on that now through the Paralyzed Veterans of America. It's not over until it's over. I'm trying hard to keep a positive attitude.
My speech, swallowing, urination and other issue are the worst. I don't have neuropathy, but I do have significant neurological manifestations. Pain consumes me.
I feel very alone, but I can only imagine how many people feel the same.
Being a typecast person is very hard. I not only have to work through the system of medicine, but I have to work through the systemic hatred of simply being HIV positive. People with ALS get empathy, I get judged. It's a different world altogether. I'm not allowed to talk about it. It bottles me up.
I didn't choose any of this. I'll be hated no matter what and will struggle twice as hard to get things handled. All I want is to die peacefully. I have empathy and sympathy for anyone going through what we do.
Sometimes I feel I will have to kill myself before someone else does. I don't know what to do. Somehow others feel it is their duly responsibility to make my life harder because they prejudge me. I don't know what I am going to do. I don't want to suffer any more.
I want to go home. I just want to die.