ShatteredButStillWhole

Our Government’s Prognosis

I was awarded Social Security Disability Insurance (SSDI) recently. “Awarded” is their term, as if I have won the award of being chosen out of the malingers to be a real, true, crip. Only 30% of applicants are as lucky as me to be approved on the first application, the rest must either appeal the decision and work harder to prove their cripdom, and eventually win, or otherwise are never approved.

 

I got a letter in the mail today from the Social Security Administration (SSA) explaining my benefits and my “rights and responsibilities.” There’s a section called “Things To Remember For The Future.” This is how it begins: “Because we expect your health to improve, we will review your case in June 2013.”

 

Wow, SSA! Thanks for the vote of confidence! By what calcuation, cold and hard I imagine, did you conclude that expectation? I spend restless nights, sleepless nightmares, disrupted moments of quiet, wondering whether I will get better. Will my gastroparesis continue to improve with my gastric neurostimulator? Will my flare up’s become more or less frequent? Will I be able to work? Will work stress make my gastroparesis worse, or will it provide a much needed distraction? I asked my gastroenterologist – the one who set me up with the gastric stimulator. He’s world renown for his work with gastroparesis. He told me with this disease, it’s too hard to tell. “It waxes and wanes, I couldn’t say, make sure you keep you disability claim on file,” were his words.

 

They expect my health to improve. Does that mean they can plan for it? They can stop worrying about maintaining a savings safety net for the next period of high medical bills and unemployment? They can think about children and a future without worrying, “will I live to see them through high school, at least?” They can talk to employers and feel confident about their responses, because they can count on their bodies to carry out what their vocal cords are proclaiming? They can reassure their upset emotions that “time will heal all, just wait, it will get better,” with all the confidence of their omniscience?

 

If so, I do look forward to June, 2013, with the gusto and energy of an able-bodied person who does not burden her government.

Playing Patient

My body needed fluid
There wasn’t any left I was dehydrated
Dangerously dehydrated
But my own actions were futile
Useless
I drank and I vomited
Vomited everything water came up
Water the traditonal route via hand to cup to
Mouth to
Body
Failed.
IV fluids intravenous fluids were the only
Option I had not choice to
Live I needed IV fluids
Doctors tried to insert the tube in my
Vein but
Failed.
Collapsed vein.
Overused vein.
Too many needles for
Too many IVs
Over months of dehydration and vomiting from
Gastroparesis. What’s that? I’ll google it says
Admitting nurse at the
Emergency room of NYU hospital.
We could try her neck, jungluar
vein always works. She needs a
PICC line, central line, but it depends how
Often she needs IV fluids will she
Continue these bi-weekly
Dehydration vomiting emergencies? Will she get the
Gastric neurostimulator? Will she get in to see the
Specialist? Will her
Insurance foot the bill? Approve her
Need? Will she meet the
Criteria for the FDA
humanitarian use? Will it
Work? Sixty percent
Success rate,
Odds are good. How long till it
Kicks in? Could be a week, months,
Never. Hard to know. Let’s do the
PiCC. Meanwhile, my
Body still needs external nutrition and liquids, I
Wait, hands to cup to mouth to body
Fails so I can wait,
Patient is the name of the game. I
Like to win games so I wait. But my
Body is too much for the doctor? You’re back again! Yeah, not much we
can do for gastroparesis, you have refractory gastroparesis. I
Google, it means none of the meds work for me.
Family? Haven’t showed to the hospital its been
Months of frequent trips.
Refractory body feels too hard for me, too, but I
Like to win games. Once I
Forfeited, I gave up on my body via
Oxycodone to hand to mouth to body. It was a
Close call but it
Failed. I’m grateful now. I
Like to win games. Don’t call me refractory. I’m
Still here.