Complex health

Hi all. New here as a listener and introducing myself to this forum as it is one near, if not dear, to me.

I have a complicated health history with multiple issues that have been with me my whole life and are getting worse as I get older. I am a patient of the Undiagnosed Disease Network through the NIH and have been found to have several novel mutations likely contributing to my issues, but no all-encompassing diagnosis.

I do have classic type Ehlers Danlos, which is probably complicit in multiple compression syndromes-- avt bilateral Thoracic Outlet Syndrome, bilateral cubital tunnel syndrome, bilateral carpal tunnel syndrome, Shoulder impingement syndrome... You get the picture. I have had multiple surgeries to try to keep ahead of things.

I also have multi factor hearing loss with far advanced otosclerosis and Superior Canal Dehiscence Syndrome-- both bilaterally. I have been told that the otosclerosis is the type expected with Osteogenesis Imperfecta, for which I have genetic mutations. My hearing loss is profound and I was just told I will need cochlear implants sooner rather than later. Complicated.

I have complications in literally every body system too numerous to go into here, but it often feels like I attempt to put out a fire in one place just to have it spark in another. I know some of you can probably relate to that feeling.

Despite these things, I move forward and carve out meaning in my life where these are "just things", and not even the most interesting things about me. If you feel challenged and want to talk to someone who also struggles with balancing life in a body that seems unwilling, I'm happy to talk. 😍