My doctors think I'm crazy, but I think they're inhuman.

I never thought I'd actually want my medical tests to come back abnormal, but that's what I find myself wishing for. I want something that my doctors will take seriously, because my word about my symptoms isn't good enough for them. Doctors won't treat what they won't diagnose.

I had a nerve conduction test last month that I thought would finally put some of their doubts at bay. The neurologist said the results came back normal. Upon looking at the results myself, I realized that they didn't even test for myasthenia. Ugh. I knew there was something wrong when the doctor performing the test said he was done after less than half an hour. I was told it would be a two hour test. And I thought the whole purpose of the test was to check for myasthenia, but apparently not. And the faint smirk he had on his face as I limped out of the room with my walker. It was the same look other doctors give me before they tell me I just "need to exercise", or "go out and live my life", and to stop being in the "role of being sick".

I also had to postpone my lip biopsy because that doctor wants $485 up front. There's no way I can afford that.

I did email my neurologist and request a blood test. I am so praying that those results come back abnormal. :/

I really had no idea that the healthcare system was like this. Since starting this journey, I have heard countless stories on my internet support groups about people being told that their symptoms are psychological by their doctors and being refused treatment. There are so many of these stories that I believe this attitude of health providers is the rule rather than the exception, when faced with a patient experiencing symptoms of certain autoimmune, autonomic, or rare diseases.

I genuinely thought I'd be better by now. And as crappy as I feel everyday, I sometimes think that navigating the healthcare system is the worst part of being sick. My self-esteem suffers a little every time I go to the doctor. 

Thoughts on a Tuesday morning

 Another day
...of waiting.
I am strong
...but I must wait.

They don't care,
but it's okay.
If this was fatal,
I'd be dead already.
But I'm alive
...and waiting.

(Is this what it feels like to be forgotten?)

August 3, 2014

I am strong...
but I am being pulled
from so many directions.
I want to ask
if it's okay
for me to break
just this one time...
But I know
I don't have that luxury.
And I know better
than to ask things
of someone I no longer believe in.

Only one time...

There's only one time
I wish I could rewind.
With all my mistakes,
the one thing I'd erase
is my knowledge
of something unkind.

Best friend,
I wish you were a stranger
because then I could hate you
or look at you with anger
But as it stands,
my heart tries to understand
what my mind says is unthinkable.

If my body could forget,
maybe I wouldn't feel so sick...
But my muscles remember
My bones remember
What it was that you did.

And my heart with it's grief
It wants to believe
That this rain will someday cease.

July 6, 2014

It's true.

Nothing you do
will ever be good enough,
unless it's respect
that you give me.

The things you say...
The things you do...

It boggles my mind
that you are capable of such things.

To think that you
could be my friend
was wishful thinking.

I don't want to talk to you anymore.
The truth is overwhelming.

I saw light...

I saw light
through the webs
and glass
and dust.
Past the shadows,
I saw the sun.
Oh me, who is never myself,
I saw light.

The vision pulled
my eyes to the sky;
It scattered my body
into broken color.
Through a window,
I emerged...
as naturally
as the stars shine
in the moonless night.

I saw my reflection
when I gazed at the sky;
I saw
not the dark
but the day
before my eyes.
And I felt you.

Oh me, who is made of light,
I felt you pull me near.
From the deepest shadow
to the zenith of my being,
your presence pervaded.
In revels of color and creation,
the universe blossomed.
And I found you,
Oh you, who is made of stardust.

Intro

This blog is where I will attempt to give form to the shapeless thoughts that permeate my being. I am doing so publicly, because I refuse to be ashamed of the experiences that characterize my existence.