So. Yeah. I’m in the hospital with a brain thing. That’s #1; #2 is that I’m one of those effing poor people we all keep reading about.
First, apologies for the old photo above and lack of HTMLs and illustrations in this diary, as I’m pecking away on my iPhone from the Bubble Boy Hazmat Plague Ward of my local hospital today. And also for not being able to tend this diary very well. And I’ll warn you that there are a ton of typos and suchnot headed your way; some of them are the fault of effing iPhone autocorrect, some are just plain typos, but most are my own damn fault.
STUFF ABOUT ME YOU DON’T REALLY HAVE TO READ
I have an inoperable pituitary tumor in conjunction with empty sella syndrome. I’m too tired to type it all out and it’s too boring for you to read that whole sitch right now, but basically my superb and internationally renowned neurosurgeon (who is awesome) thinks maaaaaybe, poooooossibly he has a solution that involves taking tissue from one of my abdominal organs, cracking open the base of my skull, wrapping the sella tursica in that abdominal tissue to keep cerebral spinal fluid (CSF) from filling the sella tursica (CSF is what’s putting pressure on the tumor and putting me in the hospy right now). After that heals, he can remove the tumor without concerns that CSF leakage would impede healing.
Geez, how could I possibly make this more complicated? Oh! I know!! I could also have chronic leukemia and a beaten-down immune system that’s had me on in-home quarantine a lot. This causes my neuro to estimate I have about an 80% chance of developing a postsurgical infection with the abdominal surgery and about an 85% chance of bacterian meningitis by the time he’s done with the second brain op.
Anyhoo, all this is made more challenging by the fact that I am, as so many of us are, poor. Really, really poor. Like last week I went to the grocery store to spend my entire $5.36 bank account on some fresh produce and asked the produce guy if he’d let me have a pack of 3 peppers for free because one of them was clearly spoiled, and—oh! by the way!—could I get some nice discount on this bag of onions with one or maybe two moldy ones in it? So I got the veggies I needed and paid in dimes and pennies, with enough to spare for “manager’s special” packet of dried milk. Whoo hoo! MsSpentyouth, eatin’ high off the moldy hog!
Also so poor that I can’t afford most of my medications.
So when my pituitary adenoma decided last November that it wanted to crank us up to full-on diabetes in no uncertain terms, it was super-hard to figure out how to pay for that. But, you know, healthcare costs have made me a grifter—the type of grifter who can come home from the grocery store with $5.36 in produce and dried milk to make a huge pot of a really delicious stew when combined with the chicken I received at my weekly foodbank stop.
So. Yeah. I’m a grifter.
But I was just a wee, infant, baby grifter until this week, when my adenoma let it be known that the blood-glucose reading of 594 wasn’t going to be an anomaly; it was going to be my new normal.
YOU CAN SKIP THIS PART, TOO. I AM NOTHING IF NOT VERBOSE.
No bueno. Anyone who knows these things understands the term “ketoacidosis” and probably understands why my endocrinologist was … um … alarmed that I wasn’t dead when I called her Tuesday afternoon with concerns. She was even more shocked and awed that I wasn’t even *slightly* comatose when I arrived at the Emergency Department (yes, we are supposed to call them EDs instead of ERs despite the fact that the acronym ED makes us snicker).
The hero here? That pituitary adenoma!! It, not my pancreas, is the reason for the crazy-high blood glucose levels, and apparently that’s caused some strange tolerance or transubstantiation or somesuch.
THIS IS KINDA RELEVANT BECAUSE … WELL … FRANCE
my neuro guy thinks I should take a vacay in France, where healthcare decisions aren’t made by our finances. This is significant because … remember last spring when Congress wanted to gut Obamacare and possibly Medicare and a bunch of other healthcare thingies? Well, my Medicare Advantage company thought it should suspend most preauthorizations for its patients until Congress got off the fence to kill us all or let us live our meager existences. So they refused to authorize all of the MRI preauthorizations for most of their brain-tumor patients.
My neurosurgeon can operate in a cattle car stuck in a broken track in the middle of a South Dakota track in a blizzard. He’s good, and he’s got people all over the world who’ll work for him for nothing more than a pack of Juicyfruit and half a dozen jujubes.
So he had a group of his glioma and other brain-tumor patients go to France, where there’s a Center of Excellent for this type of thing. They went in October. Dagnabbit, I knew I should have gone with them.
Go to France and get healthy, Dr. F has been saying. Get your MRIs, spend some time getting proper meds and doc visits whenever you need them. Life the high life! Go crazy and order the *non*-irregular albuterol inhalers!! In France, you can see *actual* doctors and not just that wall-eyed guy on the freeway off-ramp who calls himself a shaman and will read chicken intestines for you for $3. (I could even eat peppers that have absolutely no mold on them whatsoever!! O the utopia!!)
Then, he says, maybe we can get rid of that tumor without meningitis and a bad headache.
So. Argle-bargle blahblahblah about that.
Back to that grifter thing.
Now, I thought I was on the road to becoming a terrific grifter. Srsly. I was high on pride over my free peppers and moldy onions for $.50 …
But I am *NOTHING AND NOBODY* compared to the U.S. health insurance system. Great limpin’ Jehosephat on a Segway, I had no idea.
My Medicare Advantage company isn’t really helpful with people who are both poor and in need of medical services. (duh) But, whoa, catch this:
MY NOTES FROM A MEDICAID OFFICIAL WHO TOOK A REFERRAL FROM MY MEDICARE ADVANTAGE CASE MANAGER. BOTH OF THEM ARE VERY KIND AND COMPASSIONATE PEOPLE.
These are just my notes and aren’t verbatim quotations from the Medicaid application processing person. But they’re good notes.
I am so sorry you’re facing all this and that you are not finding options that work for you to afford your medications. Based on what your doctor and the nurses here have told me, I do recommend that you listen to their advice to go immediately to the ER. I’m very sorry that your financial circumstances have kept you from going already. If you were my sister, I would drive you there personally, because you must hold on. You have things to live for.
I’ve thought about this a great deal and did a bit of research when I had you on hold. And I know it’s unorthodox, but both you and I know that our healthcare system is no longer very orthodox when it comes to actual patient care.
Let’s withdraw your application for a special Medicaid term of coverage, because if we move forward with your application at this time, we’d have to take into account your medical bills (not what you’ve paid but what you owe) for the past 90 days, and you’ve already told me you stopped going to see doctors and refilling some of your prescriptions because of your financial situation. We’ll start over right now. Perhaps you could go to the hospital tonight and get immediate treatment. Then speak with their accounting office and ask for a printed estimate of how much would be your responsibility after Medicare Advantage pays its share.
The reason for this is, for me, heartbreaking. Because after I run everything, I see that you will have to demonstrate a “retromonth” accumulation of $2,300 a month in medical bills that you cannot pay. [INSERT MY GASP HERE, as I’d already told this wonderful, caring woman that my entire 2017 ANNUAL income was $9,486.] I know. I know. But this is our system, and we have to work with it.
So don’t pay the bill when it arrives; send me that estimate from the hospital. Send me all the estimates from your doctors and your pharmacy. I’ll send you a letter you can give your doctors stating you’re in application for Medicaid supplemental assistance, so they can be assured the bills will be addressed.
This will be hard work, but because the pharmaceutical patient-assistance programs now require a “spenddown” of usually $1,000 out of your pocket before they’ll help with medication assistance, I suggest that you approach 15-20 pharmacists and ask them whether they will invoice you rather than ask for a copay for your most expensive medication. It’s not highly likely, but one of them might say yes. Then you can submit those invoices to the pharmaceutical patient-assistance programs to demonstrate that $1,000 spenddown amount.
So. Yeah. I have two “best options” here: 1) go the fuck to France; 2) grift the hospital, my doctors, and pharmacy into giving me sketchy paperwork so that I can con my way into receiving SIX MONTHS’ WORTH of Medicaid coverage so I won’t go into a ketoacidosis coma, suffer a stroke, or become medically impaired to do all of this craziness whenever some other semi-apocalyptic medical event comes along.
I know I’m preaching to the choir here.
But I also know that while I’m here in the Bubble Boy Hazmat Plague Ward, I’ll be writing postcards to new voters in my N.C. House district and my N.C. Senate district, possibly doing some phonebanking, or at least cranking out some Hustling texts (ha! irony from a grifter!) for my gun-violence-prevention organizations, and putting the guilt trip on local friends to cover for me at events I’m supposed to be at tomorrow and this weekend. Cuz we grifters do that.
When I’m not challenging the yellow-hazmat-suited lab teches to wheeled IV-stand Kentucky Derby races around my room, I’ll be spending every waking hour letting nothing—NOTHING!--stop our #BlueWave. And this is not simply cheerleading; I am serious as a brain attack.
It’s kinda too late to save my millennial children from healthcare that has nothing to do with 1) health, or 2) care. But damned if my grandchildren are going to have to grift the system to keep themselves alive.
Stand up, speak out, don’t back down from getting voters out to stop this Bizarro World steamroller. Or whatever other mangled metaphor is at least slightly appropriate.
I love you. I love you. Please hug a grifter today, and DO NOT STOP THE #BLUEWAVE.
P.S. Can I guilt-trip you into adding tags to this diary? I’m exhausted. (See how I did that?)