Why is this whole illness such a nightmare from beyond? It’s like some of us have to stave off demons from every direction whilst already battling for our lives alone.
So, I have a few things that are approaching medical intervention, if I want to stay alive that is. On days like today, I close my eyes because it’s all too much.
So, I may be getting new insurance in January. If that’s so, I could long last travel 6 hours somehow and get to Mayo Clinic. No one knows how this happens. Not happening we are getting 4 volunteers to help with this for a week? Two? No one even knows.
My husband came to talk to me (rare) and said although this dr ‘challenged’ me, he wants me to consider going back to him bc he’s my only option.
Im quite aware my options are limited, but why, in the f*** of why’s, would I put myself through torture I can no longer bare? I’ve worked so hard to get this strong. To just give that guy the keys to take it all from me in weeks, sounds purely asinine.
My husband reminded me I can’t lay here like this forever. Which, I understand. Believe me, I do. But these people want me to exist in a form I’m not capable of. To say it’s triggering is a massive understatement.
Being reminded, I’m not wanted like this, unless I get better I have to find a better way. My family is not very supportive. Understatement. They are still fixed on that I say I can’t tolerate covid vaccines and haven’t had an annual Pap smear. These people are so detached from the reality of my situation and how I just brought myself back to life.
It’s all so disorienting how invisible my plight is.
I’m constantly buying time. From this illness. From my husband putting me in a nursing home. From being forced into physical therapy I can’t do. From getting the proper testing I need.
I just looked at my medical doctors notes on Friday from past 6 years. Cardiologist wanted evaluation for Addison’s disease. Never done. Psychiatrist ruled this is not conversion disorder snd wants me tested for pheocromocytoma. A PSYCHIATRIST requested this. Never done. Cardiologist requested neurologist test me for guillian barre syndrome. Never done.
The rage…. That boils through my veins at my stolen life from my daughter…my son. Is so high, that I do not have the capability of energy to express it right now. The rage at SIX years later of dealing with these f***** again. Currently in my chart, it says if my blood work and tilt table test are fine, I’m being referred to psychiatrist. Again. Keep in mind, cardiologist in 2017 said I wasn’t even strong enough for tilt table test. I’m so much worse now. Severe pain in organs and hypoxia at times. This seems like a medieval torture chamber they want me to casually walk through with what’s that psychotic doctors name?
I mean. I’m running out of options folks. This isn’t good. I have tried extensive avenues to get help. Even a whole page story in newspaper has crickets. A few volunteers. No medical help.
This seems like such a nightmare it’s hard to understand its reality at times. Every minute. Of every hour. Of my life.
I guess as of right now, my best bet is, if my husband will allow me to, go to Mayo Clinic in January. Not ideal. Need helpers. Need o2 machine. Would cost him money.
I’m about out of options in my state for actual diagnostic physicians. Which my family wants.
They are tired of taking care of me.
But I like life. I love raising my little girl and my son and I would like to keep doing so even in the form I’m in. Yet, it seems a war is a brewing again. I’m getting ready for yet another fight I don’t have the cellular capacity to navigate.
So, I’m on my knees today.
Oh, except I can’t even really get on my knees.
No reflexes under knees quietly recorded on my file 3 weeks ago.
Praying a way will be made.
For the invisible woman.
Oh, and my daughter has many of the early symptoms I did of Lyme disease. And it’s a nightmare to experience and witness. And these professionals are f****** insane to think that this is not being passed in utero. It’s honestly beyond insane. And no one believes her. Just like me. So, it’s basically me ….treating us because my family does not believe in Lyme doctors etc. I’m determined to not let her end up like me.
I’m strong but…
I need help 💔🙏
“Hope is not always soft and lovely
She is not always cascading rivers
And sunlit skies, dancing. Hope knows
There is work to be done. There are roads
To be traveled. Turns to be made.
She is bare bones and deep waters.
She is weary and weak. She is
Barely a glimmer. She shakes when she speaks. This is where hope lives. Smothered
In sweat. Full of war. And on the verge
Of crumbling into the sea.
Yet there she is, quietly breathing.”
~ ullie Kaye