Everyday I hope to be able to at least get out of bed. I'm on endless medications. The range of symptoms is endless & mind blowing. Dealing with hair loss, nose & mouth sores, nose bleeds, muscle & joint aches, cognitive issues, bleeding gums, dry eyes, excessive thirst & fatigue! Minor cuts that won't heal for months on end. In pain all the time. My quality of life has become almost no -existent.
I have lost my career, my marriage, my friends and have become isolated in my bedroom unable to escape. The excessive weight gain & occasional facial blemishes make it so I want no one to see me.
I use to work in Federal Law Enforcement. I went from taking down doors to being barely able to open them up. Best of all I have to keep battling with insurance companies & disability with what little energy I have on a good day that I'm ill instead of spending time with my 12 year old daughter who has had to grow up much faster than her peers because of my illness. She ends up providing me with care and help because I need it.
The guilt I feel is overwhelming !!
The shame I feel not being able to be the kind of mother I had envisioned is unimaginable. I always worked so hard all of my career. Put my life in danger to protect others to have my dignity & self respect trampled on when I'm in need.
Disgraceful.
When will the madness end? When will the doctors work together? The neuro does not speak with the ortho! The ortho does not speak with the infectious disease doctor! The infectious disease doctor does not speak with the cardiologist ?
People in substance abuse treatment are provided with case management why aren't people with chronic diseases that require several different doctor visits. ? Would this not prove to be more cost effective???