Residual Funtional Capacity...

Residual

functional 

capacity

These words are LOUD in my head. 

I gave the Doctor the RFC form to fill out 

before he was discharged. 

Residual 

Functional

Capacity...

The words finally hit me. 

It didn’t when I was in 

‘need the doc to fill out’ 

mode. 

But now... 

it is loud and clear. 

What hateful words. 

Residual 

Functional 

Capacity 

Residual. 

c : an internal after effect of experience

or activity 

that influences 

later behavior; 

especially : a disability remaining from 

a disease or operation.

Functional.

performing 

or 

able to perform 

a regular function

EX. The flashlight 

was still functional 

after I had dropped it.

Capacity.

an individual's 

mental 

or 

physical ability

This is what 

the Doctor filled out 

before he was discharged,

so we could submit  It to 

social security. 

And so this is just 

the heavy reality. 

He calls us to him, 

through the day, 

just to get a hug. 

Take nothing for granted. 

Ya. 

That’s what we are 

trying to learn. 

I think he has 

embraced it fully. 

And we are 

right behind him...

Trying to embrace that,

but unwilling to;

worried that

if we do,

we will lose him

And so we fight...

every inch of the way. 

Not that we 

do not want to 

embrace it,

but that we are 

unwilling

to let him go. 

Because we love him

So much

and aren’t ready to

live life without him,

whatever that life

may look like. 

Heavy sigh...

Shell 

Kitty

finally loves him again...

White Noise

White noise

At night, David comes
to our room. (Yay!)

My new spot
is in the middle.
Although my old spot
has an indention of me.
It was comfortable
and cozy.

The middle
will soon have
indentions of me;
I am breaking it in.

David is on oxygen through the night. The machine has its own song. It sings us to sleep.

White noise.

I am almost always
not tired when he is,
but I try to be.
And the ‘white noise’
helps.

Today I moved the humidifier into our room, because he uses the most oxygen at night. 

It is very drying to the nasal cavity. 

And a humidifier 

brings a little more humidity to the air.

There is a small door on the outside 

that can hold a cotton ball soaked 

in essential oils. 

So he gets ‘healing humidity.’

We are all so tired still, 

despite a full nights sleep.

The house is a little upended in several places, but we are slowly finding a rhythm.

We are getting there.

I spoke with David’s pulmonary doctor yesterday. He had looked over the recent

 X-rays, and wanted to let us know that there are a few air pockets in the right lung.

Nothing to necessarily be alarmed about, 

but we will most assuredly 

have to get consistent X-rays
to make sure things
are at least the same
and not worse.

He has been
more tired than usual.
And we all encourage him to 

close his eyes throughout the day.

Rest equals recovery.
And we are 

great fans
of rest.

More to say. No time to say it.

However, 

thank you ‘person’ 

who gives consistently to the
‘go fund me’ once a month.
Every time I see your name, 

I cry and think... 

thank you for taking a little pressure off; 

it helps more than you know. 

And I haven’t seen you in so long 

but when I think of you I smile. 

And I think, wow... you love us.
THANK YOU!

To the ones who consistently comment, email or text... thank you so very much. It lifts us up every time; no joke!

To the one who gives twice a month...

Flat out beyond thankful. 

The temporary disability was supposed to continue for ninety days, 

however it stopped at thirty days. 

We have been trying to deal with that. 

You pay for insurance 

and then when push comes to shove, 

as my mom says, 

you can’t suck blood out of a turnip. 

As I write that I’m thinking 

it’s so graphic 

and commands a second look. 

It certainly lives up to that!

(She said, whaaat???)

Hopefully they will make good

on their part, SOON. 

Four weeks without a check 

from temporary disability. 

And waiting on SSDI approval. 

Every little bit helps 

and we want to make sure you know

how very grateful we are. 

To the ones
who are quiet
and in the background, wishing us good?
Thank you.
I am always surprised when someone says
‘we are reading the blog everyday.’

I’m like, how did you even know?!?!

And it gives me breath...

I am missing something,
I know.

Please don’t feel overlooked.
My brain is full
and it’s hard to remember all the kindness,
but in the moment of kindness?
I am so overwhelmed
and thankful.

XO
Shelli





Sent from my iPhone

Baby Steps

David is doing pretty well. Today I was able to see many positive steps forward. 
It was refreshing.

Getting up by himself,
as we stand by to assist,
if needed.
Sitting at the table to eat his meals.

Oxygen is a large part of his day; even more so while sleeping.

Will this be a
forever thing? 
Maybe.
It is undetermined
at this time.
Realistically speaking.

Can things change?
And surprise us?
Most definitely!
But now is all we have,
for the moment.

He does tire out easily,
but it is to be expected.

He has not used
EVERY MUSCLE
OF HIS BODY
for 90 days...

And every time he walks,
He aches.
Every time he exercises,
He aches.;
to be expected.

His body is also still ‘purging’
the paralytic
he was given
while in a coma. 

Baby steps and strides.
To us?
Baby steps
ARE
Strides.

They are nothing to be
taken lightly.
Every step forward
is more than a step.
It’s a leap. (to us...)

Today  he told me
he hoped
I wouldn't get tired
of helping him...
And I  just
cried and cried.
‘I will not! EVER!
I am all in.'
And many other words... that he feels like
he can't do
anything
for me.
And i reassure him
that he most certainly can and does!
I'm honest;
I cry;
he lends his 'bony' shoulder for me to cry on. And he says
 'I got you.' 
That is everything!

And so we are growing and crying
and learning
and accepting
and living today.
And a turning point today is that
this is what we have.
A new chapter.
Another new beginning.
A grieving from what was and a learning
of what is and is to come. And a new life
that can be
just as beautiful. However...
we must learn the ropes. We cry.
We laugh.
We worry.
We grow.
Hopefully we settle in
and find peace.

New thoughts.
Still stretching.
I'm just
bouncing off words
your way
in hopes that they
bounce back to me
so I can see
something new.

And thank you, kind friend, for sharing hard but truthful thoughts that helped me arrive in this moment. I can breathe.

We are patiently waiting for SSDI (disability)
to be approved.
We are THANKFUL
for legal advice concerning bills owed.
Again, we can breathe.

Now to just make it through another month.

If anyone has any advice about financial assistance for disabled people besides SSDI, we would greatly appreciate your thoughts. 

I will, at some point, find employment to contribute;  as soon as he is able to manage on his own.
Until then,
we are all he has got,
and I will stay by his side until I know he will be safe.

Thank you so much
for hanging in there
with us!

I think I’m drawn to continue writing the blog just as a reminder
that you are there
and somebody cares.
It helps me move forward.

XO
Shelli