2019 Update…Anyone Out There? — Update

Its January, where does the time go? Its been quite some time since I took a peek at my site. I knew I posted the full text of the ACA awhile back. Of course, I need to research the medical and humane rights the ACA gives those of us with a chronic illness. Especially, this time of year. Insurance changes, special pharmacy changes, and I am at a stand-still with the red-tape so glorified by the scum that chose profit over patient.

((rant follows))

I have fought and presented facts for years. It sickened me as to the reality of what the US is about. In its entirety, regarding the whole subject matter of my site. I guess that is why I don’t visit or write on the site that I have self funded for quite some time.

I have been in denial, I guess I still am. I detest the label, “chronic illness”, having to explain why and what I have. Heck, I don’t even like the ‘zebra’ for that matter.

At one time, right after diagnosis, and meeting others like me; I felt like I finally had a community that I could relate to. Heck, after a lifetime of being different, it was a long-awaited belonging. Until the inevitable happened. My “dignified-righteousness” screwed that up to. I made the conscious decision that I would not, and could not, support or befriend others who put profit over human life. That was two years ago.

Here I am, alone. This year, has been another hard year on my health. I wont bore anyone with that.

Have you ever just stopped caring about your ‘condition’? Deny it to everyone? Downplay it to those closest to you? Just plain don’t care anymore? I deny to myself that I have CVID. Heck, according to specific mutations, I guess I can justify that, too. Just add SCIDs to the mix. I just don’t say that out loud. No matter how I cut it, when I do not get the meds (IGg) my levels plummet.

I am to the point where I am tired of not being able to live any type of life that I want. Tired of being held back by this so-called diagnosis that is a battle just to get the meds., This is a serious money making business for big pharma and on down the pipes. Confuzzled, as my kids say.

Oh well, no matter how one views another, always remember everyone has their own battles. I just happened to put my “at the moment + 2 years” for the world to see. No one reads this blog, so I am okay with that. I just wonder how abnormal I am, hah! Pretty abnormal that’s for sure. That is why I am a ebra.
Until next time and I hope its not a year 😉

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