Social Security Saga and other things...
‘So, what we are
saying is....
we don’t really
trust your doctor.
You will have to
come to OUR
‘special’ Doctor
(in TIMBUKTU)
who is better than a Pulmonologist...
and do the
SAME tests
that HE did,
to see if WE can find something different,
so we don’t have to
give you any benefits.’
(I know, my version
has an excessive
amount of snarkiness.
It’s my interpretation,
.......however,
I promise you.....
it’s not that far off.)
Never ending Social Security Saga.
In the meantime...we wait.
The boys are cleaning, getting rid of, etc...both the shed and the garage. And I am going through one drawer and closet at a time doing the same.
Whether we
have to move
or not,
we will be ready.
And if we don’t?
We got that spring cleaning in that we normally do starting January till March in preparation for Pesach.
I love spring cleaning.
It’s always more than
just cleaning and getting rid of things.
It is also a time to look
inward and
evaluate my life.
Where am I?
Where do I want to be?
Letting go of things
that are standing
in the way
of the road ahead;
and taking on
new things
to help me on the journey;
sweeping out the corners and the cobwebs,
and uncovering
that better version;
of both home
and heart.
I feel like
I should let go
of quite a lot of things
that are standing in the way
of moving forward.
Fear, worry, stress, etc.,
Or rather
‘MY RESPONSE’
to these things.
Since
fear,
worry,
stress, etc.,
are most likely
lifelong friends
of any normal person.
Sometimes I think in movies and songs.
On one hand,
I’m thinking of a scene from Blind Side
with Sandra Bullock.
Social worker:
‘Do you find it odd Michael,
your predicament?’
Michael:
(Rubbing his legs in an anxious way)
‘Can I go now?’
Social worker:
‘No, Michael, you can’t.’
It’s funny how I can hear the actual voices
and all the inflections in my head.
I’m like Michael, on one side...
‘Can I go now?’
And life says,
‘No, Michelle, you can’t.’
(Life calls me Michelle when I’m in trouble.)
And then
on the other side,
I hear that song by
Meghan Trainer
and
John Legend.
The one that says,
‘I’m gonna love you
like I’m gonna lose you
I’m gonna hold you
like I’m saying goodbye
So I’ll kiss you
longer baby,
any chance that I get,
I’ll make the most
of the minutes
and love with no regrets.
For full YouTube version:
Hannah: ‘Why are you listening to that song, mom?’ (With a look of stop listening to sad things!)
‘I’m trying to change my perspective, love.’
I handed her my writing and she was like,
‘Oh, ok. I get it.’
Our eyes lock together.
Without words,
we nod our heads;
shrug a little,
and protest a lot
on the inside.
But try not to.
But do anyway.
And so,
on we go,
spring cleaning
inside and out,
with a
‘better late than never’ attitude.
With that being said,
living with ARDS
is really no easy task.
<<<<<<<<<<<<
Post intensive care syndrome is really a thing.
Profound weakness
Shortness of breath
Limitations to his
quality of life.
With ARDS,
fluid leaks
into the lungs'
tiny air sacs,
called alveoli,
which are supposed to inflate with air.
As a result,
he has
an extremely hard time breathing
which causes
inadequate levels
of oxygen needed
to fuel organs.
Has hands and
feet have been
continually swollen
since being home,
despite our best efforts.
He can’t even wear his wedding ring
or old shoes.
Bouncing on an exercise ball to shake up the circulation/ lymphatic systems, exercise bike, herbal diuretics to help with water retention, Rx’s to help with that as well, water intake, none of which
have had much success
in bringing down the swelling.
His kidneys
are fighting
to stay healthy.
Which is why
the swelling.
Organs
NEED
oxygen.
He must lay on his back.
It squishes his lungs
to lay on his side.
So snuggling
is off the table.
I snuggle next to him
with my head
on his chest...
and his arm
keeping me close,
even though I protest.
He is so fragile,
I’m afraid
I am hurting him
despite HIS protest
that I’m not.
He has permanent
lung damage
and different degrees of physical,
cognitive, and mental health problems.
He is so weak
even after much
physical therapy.
His taste buds have changed
and he doesn’t like many
of his favorite things anymore.
(I know I am repeating myself on many things. It’s just an update of what still is.)
He had to sleep in the recliner last night because the last few nights
he has woken up coughing
and not being able
to catch his breath fully,
despite the help
from his oxygen compressor.
(fluid in the lungs;
an ongoing problem
because of the
extensive scarring
in both of his lungs.)
I have been
seconds away
from taking him
to the emergency room
the past few days.
And some days
we still cry;
a lot of days.
He still can’t laugh
out loud.
He does laugh though,
and makes jokes
about his ‘predicament.’
Always making us laugh
through our tears.
Best man ever!
Fear, stress, worry, etc.
Not enough time
in the day
to do everything.
There is always something to do daily
with what person
needs this
or that
to be faxed or mailed
and some creditors
that won’t wait
for our financial approval,
so we started paying them
five dollars a month.
Bills keep coming
and money doesn’t.
We have never been late
or missed payments;
but if something doesn’t give,
then we will have
no choice.
And so,
“I’ll kiss you longer baby,
any chance that I get,
I’ll make the most
of the minutes
and love with no regrets.”
My new motto.
So, please excuse my messy,
disorganized,
crazy,
overwhelming life,
house,
desk, etc...
The shtuff can wait.
It will still be there tomorrow.
It ain’t goin’ nowhere.
I got some lovin’ to do,
NOW.
XO
Shelli
Sent from my iPhone
Please know your family is always in our thoughts and prayers.
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