Update: in which I don't know how to deal with good news any more. · 2:31pm Mar 6th, 2019
I really don't.
I can't even see this as something real. I'm very patiently waiting for the world to take it back, or find some way of corrupting it. Part of me believes that just telling everyone here will be what makes it all go wrong -- and given that, it's best to just get it out of the way.
So...
I never resolved the last situation, so let's do that first.
To start with, unless the exact potential future incident is their specialty, I am never taking her back to that hospital again. I've seen corporate spokespeople make more sincere attempts to communicate. I asked for forms to sign so they could speak with her primary facility and physicians, I asked for updates, I asked for anyone to tell me anything... and I never got the forms, Update #1, or a diagnosis until the last day. I left that building swearing that when the bill came in, I was going to write Screw You across it and mail it back postage due.
(But for tags and edit cleanups, all of The Captain Of The Fridge Guard was written in the hospital cafeteria. There are exactly two power outlets available for well over a thousand employees. Nice planning.)
Were there good people there? One. Her assigned doctor (met twice, maybe ten minutes total) wasn't bad. But the ward desk wouldn't talk, and when you get medical professionals who refuse to let you know what they're thinking... that's the end of it. She only went there because at the time, one possibility was stroke and they're the accredited treatment center in this region. If she has a stroke, she'll go there. Otherwise? It's not worth the shorter drive.
So what was the final diagnosis?
I've been researching it. All she displayed for symptoms was difficulty swallowing (which the myasthenia already causes) and fatigue (brought on by some of the medications). Nicely camouflaged until the moment everything crashed.
So now there's one more thing to watch for: given her typical swallowing issues, this has a good chance to recur. (I've been lightly panicking because the last two mornings have seen two more urinary incontinence incidents -- but she's also been drastically oversleeping and given the number of antibiotics she just wrapped up, it almost can't be a urinary tract infection.) And we still aren't heading back to the less murky parts of the forest, because the colonoscopy results came back.
No cancer. Let's get that out of the way: no cancer. But she has a forest of polyps, and some of them have been classified as premalignant: they can't be left alone for long. Others are 'flat polyps' and will require special equipment to remove. So that's the 21st of this month (set up yesterday), and I'm still waiting to hear from the spinal specialist about getting the second cement injection back on the schedule. But before we can get to that? Another cleanse. I directly asked if she could be admitted the day before the procedure and have it professionally conducted: they said they'd call me back. I just want her to have medical supervision this time: I don't feel I did a very good job on the first one -- and another forty-two hours awake may wreck me.
Juggling procedures. Trying to keep doctors straight. There's still a right calf blood clot to deal with at some point, and the dementia is never going away. (Yesterday's Bad Day highlight was being asked for the same information on where we were going and why multiple times, with one coming less than thirty minutes after the most recent reminder.) But I promised you good news, so...
Medicaid accepted her.
It's been a while.
The first part of the application (sent by her social worker at the hospital) was submitted at the end of October. I personally dropped off the major paperwork (copies of documents plus bank records) at the processing office in mid-November. The social interview was a couple of weeks later. And then we had just a little government shutdown, I heard nothing at all, things started back up and it was still dead silence, I went into the office in early February, was promised an answer for nine days later and that date passed without contact, I was gearing up to actually Visit My Congressional Representative... and the acceptance letter just came in.
(Predicted application processing time on the website: six weeks.)
Understand: all I have is the acceptance letter. No card: that'll arrive under separate cover, and it may take a few weeks to do so. No details on the exact branch she's been taken into, or what that plan ultimately offers. Plus I'm still waiting for an Accepted By Mistake: Oops! followup, and will be for some time.
There are also older medical bills which are still being paid off, and I spent some money which, if I'd known what was coming, I shouldn't have spent at all. Why? Because the acceptance was backdated, and so has a chance to provide a degree of coverage to several bills from that point forward. I already paid some of those. How much? Four digits' worth, and still more will eventually go to invoices which appeared before the backdate. (Also four digits still outgoing there.) So this is not home and dry, and I can't even claim Home And Vigorously Toweling Myself Off. But...
...I've been told that having a hearing aid covered is a near-certainty. I've been longing to get her one for a long time, if only to keep a maxed-out television from deafening me. And... she's been missing a lot.
Dental and vision may be within reach now. She needs both.
Any additional percentage of medical bills paid for helps. Costs for rent, gas, electric, food, and transportation still exist.
(I realize that she's effectively with an HMO now. There are doctors I will not switch away from. If they say 'We won't pay for this neurologist,' then I will. She needs to stay with the one who knows her best, and that applies to multiple categories.)
Home health aides could be available (limited hours per week), but she would need to consent and -- she's resistant to a lot. Still. It's well below freezing here, I spent an hour begging her to put the heaviest jacket on because the car currently has no heat (I ordered the parts: one is in, the other arrives tomorrow, and the vehicle has also been semi-randomly stalling out at idling speeds) and guess how far I got?
Beyond that... I have to see the paperwork. The actual card, and the documentation which tells me what she will and won't receive. And -- she has to reapply every year, right? So this could be very short term.
...listen to me. Legitimate issues all, but -- right for the negative. Because I don't know how to deal with good news. Every rope handed out can be yanked away. All supports break. Something has to go wrong. I'm just waiting to find out how.
This is why I still think this is a mirage.
Remember when I told you about the social interview? That they mentioned what I would get?
Her social worker at the hospital mentioned a new Medicaid-connected program: personal preference care. This would legally designate me as her caregiver and in doing so, provide limited resources. Partial fuel cost reimbursement would be nice. But she also said there were a lot of hoops to jump through and most people didn't make it, so -- not anticipating anything there. And I don't think I'm a very good caregiver. A good caregiver would be someone she listened to.
But there's something else. Thirty days per year of respite time, which can be divided up as needed. I just... contact a local physical rehabilitation center (and not the one where she had the incident) and book in advance. Thirty days where someone else is taking care of her, and doing so around the clock.
I already know that if this is real, if the rug isn't pulled out -- I still can't use them all. I'll be lucky to use any, because she resists. "I need a day off: please go over there for a while." No. That won't go over well and without medical power of attorney, I can't exactly force her in. And I'm pretty sure unused days won't roll over.
Even if this sticks, if Medicaid doesn't revoke the approval... I can't get thirty days.
No cancer + Medicaid are good news!
Is there any way you could get the medical power of attorney? Because of the dementia, sooner or later you will need it.
In any case, continued vibes and best of luck to you!
I've had AHCCCS (Access), which is what the GOP blessed us with in Az.
Much depends on which drugs your mother gets.
Some are covered 100 cents on the dollar, no copay for the destitute.
Some are partial pay w monthly copay & it depends on the drug
You will just have to wait & see.
Ain't you glad that DJT & the GOP saved us from the horrors of socialized medicine?
Why, you would have gotten everything for free & that would be a Very Bad Thing
Holy shit, that is good news.
And I know you've got little reason to trust, but Medicaid is not so bad, re: making sure her doctors are covered. Though, if they aren't right now, you might need to wait until November and open enrollment to switch networks. (This might also vary state to state, what do I know really?) Whatever you do, don't trust the health care provider's website; call your doctors and ask if they take it instead.
Woo!
Here's hoping the rest of the documentation shows up soon.
I can say I’ve never had trouble getting the specialist I need with Medicaid. Since I have a rare as fuck diagnosis (vascular Ehlers-Danlos syndrome), it’s not uncommon for doctors to want the genetic test as well as the differential (Medicaid doesn’t pay for genetic testing), and refuse to believe the dx without it. I can’t work with those doctors. It’s dangerous. (My heart defect is obvious on any scan you might like to use, but that must be fake, too.)
My yearly reviews are pretty painless, but I’m also pretty disabled. When you’re seeing 3-5 doctors everywhere from every 2 weeks to every 3 months (none go longer, not even the dentist, and that’s the one with the expensive co-pay), well. There’s plenty of paperwork backing you up.
Fingers crossed that something gies you way, which is, as always, about all I can do.
It's been said that the nice thing about being a pessimist is that no matter what happens, you're either right or pleasantly surprised. Here's hoping for the latter. I know the former is cold enough comfort to freeze nitrogen.
Medicaid is FANTASTIC. I haven't run into a doctor who won't take it. Ever. It's the kind of insurance they can make up a number to bill and actually GET that number, so why would they say no?
I hope your good news continues to grow. I'm so happy that something has finally gone right for you and your mom after all this trouble.
Yay!
And backdated acceptance is even better.
Thank goodness that something finally went right for you. Here's hoping that you'll be out of the woods before much longer.
Karma finally turned around or all the prayers worked. I am glad that you got good news.
wonderful!
Sometimes the light at the end of a tunnel isn't a train. Admittedly, if you're standing on train tracks, that can still be fairly improbable, but still...
Thank goodness for good news.
You’re good.
You care.
You give.
I’m not entirely sure what more you want as qualifications.
5023895
We had MassHealth in Massachusetts(obv), implemented by Mitt Romney. It took care of my gram's specialist visits and most of her medications, and her hospice care towards the end totally at-cost.
Good luck, Estee; I'm glad that there's been at least some good news.
(Also, if you do get those four days, the hotel room I've booked (Hilton, July 31st-August 5th) has a second bed I haven't found someone for yet. I was/am hoping to find someone or some bed-sharing group covering a bit over half the average per-night cost* (since I'm dealing with the hotel and assuming the risk that the other bed's occupant(s) won't pay after all, and I'm not in the best financial state myself), but if you do manage to get time, transportation, and registration available and just need a place to sleep (and don't have anything better), feel free to PM me, and if I've not already gotten someone for the room, I expect we could work something out.
At the very least (that I could do, that is, not the lowest I'd potentially go), I could match the lowest rate listed on the Bronycon website (129 USD currently, probably not counting tax, and I don't know what days that's available for or how long it will be available; that's also for a pair of hotels both less convenient to the convention center (looks like the distance might actually be less, looking at the website, but the Hilton has an enclosed elevated walkway connection directly linking the hotel and convention center; the Hilton rate is 158 USD, not counting tax, and the default version doesn't cover all the nights of the convention)).)
"gives you the biggest HUG ever, Pinkie Pie-level tightness"
Estee, one thing. You might be able to get "Non Emergency Medical Transport".
It depends on your HMO & it is just what it sounds like. Someone drives you to your doctor appointments.
The $ savings are obviously substantial
5024161
I'm on Medicare now, which is a * of a lot more generous
The DAY that I was eligible, I got a phone call. "We need to set up an appointment."
Scared the Hell out of me. They came to my house, talked me through the paperwork, got it all set up,
explained everything & gave me their card.
Now, I've dealt with the gummint for 50 years & their attitude has ALWAYS been
"You need our help? You can crawl naked through a mile of busted glass & fire to get it OR
you can die in a ditch without it, we don't give a damn which. Fill out the paperwork & wait
until we feel like thinking about it" I was totally freaked -until I found out that they WEREN'T
from the government they were from the HMO
(which I suppose has a financial interest in signing as many as possible)
Contact any hospital you paid for stuff done during the backdating, and tell them to *rebill tbat motherfucker*.
They should process a refund for the excess. That is WHY they backdate.
5024358
Definitely look into this. Medical billing is weird, especially once Medicaid gets involved.
That is great news. Now let's hope she starts getting better, too.
5023895
I come from a place with socialized medicine (which is actually just compulsory health insurance, paid by either your employer or yourself if you're long term unemployed or self-employed) - no, you wouldn't. If you prove to be too costly a case, they'll do the bare minimum to keep you alive, but nothing beyond that. As terrifying as the prospect of the US medical system and its insane medical bills seem to me, I've paid a very hefty sum to the state so far over the course of my productive life, and I still have to pay cash if I want a better treatment. Or paperwork. Or standard treatment, sometimes.
PLEASE COME TO BRONYCON OMGOSH PLEASE
Crossing my fingers that it's possible!
And hurray~
5024447
In honor of Paul Harvey, The Rest of the Story
WAY back in the early 1990s, I started having to piss more & more often.
Suspecting prostate problems, I scraped up the cash for a doctor's visit
(being one of the Working Poor, I was one of the tens of millions of uninsured Americans
& had to pay for doctor visits) I was prescribed Hytrin.
Pregeneric, they wanted about $100 a month.
It might as well have been $1 million, I couldn't afford that either. I was told "It's not life threatening,
no help. "(It's been 25 years & I ain't dead, so I guess that they were right. Having to wake up to piss
every 2-3 hours ISN'T life threatening). Now that I'm on Medicare, I was given Tamsulosin every day
for about 9 months before they stuck a probe up there & decided I needed prostate surgery, also
not life threatening but I get it free anyways. But, I look forward to sleeping all night again.
In short, "Pay as you go" is excellent -IF you can afford it. Otherwise, not so much.
I've seen a friend destroy their lives to the literal point of breakdown taking care of a relative who needed 24/7 care. I hope that you end up in a better position than that; the 30 days, if you can get them, may help.
The friend's story ended up about as well as it could have: when they eventually resurfaced, their relative finally had a placement in a care facility, and they themselves had been treated for their breakdown, prescribed antidepressants, and as a result had horrible memory problems but were much happier and at greatly reduced risk of another breakdown.
I hope that your mother is accepted into long-term care before it gets that bad for you, but your posts over the last year have me concerned about your own health.
If there's anything any of us can do that would help, just say the word.
Wait a minute... How in Luna's beard do you not have power of attorney? If even a fraction of what you've described is true, she is without a doubt incompetent. Is there no way you can get that legally recognized? I mean, I hate people loosing their rights, but this is exactly why the concept of legal incompetence exists.