All about this strange disease described as one of the most baffling and rare conditions of this generation, this is my story. Through all the ups and downs of this disease I've maintained a stellar attitude envied by many. Even though this condition has plagued me my entire life it has yet to lick me. Now that I've been officially diagnosed I've managed to kick its pukey arse! This is how I did it. This is how I continue to do it.
Thursday, November 9, 2017
Learning To Live Like You’re Not Dying
I’ve spent the majority of my life thinking I would die. My entire life, I thought I had a weak immune system. I got these prolonged flus that lasted days. On top of that, when I was in college I was rear-ended by a semi and broke my neck and had a subdermal hematoma (blood clot) on my brain stem.
I remember having a cvs episode in a halo on the neurological floor. My disease had yet to be diagnosed. They thought I was having a traumatic brain reaction. With my neck broken, they couldn’t bring themselves to tell me that my MRI showed that I would never have children.
Well, I did have a child. Still, I did not know I had a disease and not a weak immune system. Until four years ago this last August.
I’ve learned to live with this syndrome and to abate the majority of my symptoms.
I called this journey my kobayashi maru or my no-win scenario. That is a Star Trek reference if you have never seen an episode.
Well, I know how to live with this disease. I’m still chronically ill, but I know how to manage it.
It’s another issue that I now face.
I’m now a single mother. A single mother who is chronically ill.
That means I have to figure out how to support and care and do this while managing my symptoms. This is my current no-win scenario. Remember, a few years ago I pondered disability. I did this while I was married.
This brings me to faith. That is something I do have. I have faith that I will overcome this current situation. I’ll do it while managing my cvs.
God Bless,
Tammy
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