Our healthcare dollars at work

Before I begin, let me just say 1) I didn’t mean to leave you hanging on that last post, I swear, and 2) THANK YOU for all the nice comments and emails. February/March (Farch, as one commenter called it, which I shall use forevermore) is hard on a lot of us, huh? I’m really glad it’s almost April. Also I am (finally) feeling somewhat better, so do not fret.

But that is not why I am here today. OH HO HO HO, no. I am here today to tell you the story of why for-profit health insurance companies do not work and why when politicians start wringing their hands about how EXPENSIVE universal healthcare will be, I have vivid fantasies of setting living, breathing humans on fire. Also—in case you don’t live in Georgia or follow the news—I find it beyond ironic (like, we need a new word that means mega-ironic, please) that the state legislature here has just passed a so-called “heartbeat bill” aimed at criminalizing all abortion, because they care so damn much about LIFE, but in the meantime, everything I’m about to tell you is just fine and dandy by them because it’s not pertaining to a fetus, just my 20-year-old daughter.

Related: My favorite thing about me is how calm and collected and not at all hyberbole-prone I am in the face of dumbfuckery.

Before I go into the things I’m incensed about at this very moment, allow me to review a few related things in case 1) you’re new here, 2) you don’t remember absolutely everything I say all the time (imagine), and/or 3) you like your enraging stories to come with a full backdrop.

Background item 1: After years of small and perplexing health issues, Chickadee came home from her first year of college with a case of mono which landed her in the hospital for a week. And once the mono resolved, she just… never really got better. All of the small issues got worse and worse and new issues cropped up and thus began the Dance Of Diagnosis While On An HMO.

Background item 2: The geneticist our insurance finally allowed us to see declined to test Chickie for Ehlers-Danlos Syndrome because he could “tell just by looking at her” that she didn’t have it, which is of course how they teach diagnostics in medical school. While the most common form of EDS does not (yet) have a known genetic marker, there are 14 (ish? I think?) known types of EDS and counting, most of which can be confirmed via the genetic testing this doctor refused to order.

Background item 3: Our insurance then allowed Chickadee to see a rheumatologist who did some basic testing and then wanted to talk with her at length about how all college students are pretty stressed out, and had she considered meditation or yoga? Because we all know that stress can cause your hips to randomly partially dislocate!

Background item 4: We paid out-of-pocket to see a world-renowned geneticist who specializes in EDS and related disorders because our insurance refused to pay and we were tired of not getting proper diagnostics for our obviously sick kid. Our reasoning was that a confirmed diagnosis would be invaluable in terms of getting necessary treatment covered (hahahahahahaahaaaaaaa, I’m so silly!), and let’s just note here that I recognize how very privileged we are to be able to afford this option. Chickadee now has an only-slightly-squidgy Ehlers-Danlos diagnosis based on genetic testing which has proven not nearly as useful as we thought it would be, but whatever.

Okay. That brings us to the present, or close to it. Also, I try pretty hard not to brag on my kids because I don’t want to be That Mom, but this feels like an appropriate place to point out that in spite of the fact that this kid has been in and out of the hospital and seeing a bazillion specialists and dealing with some really hefty health complications for almost the entirety of her college career, she is now a senior in her college’s Honors program, deeply involved in multiple organizations on top of maintaining a near flawless academic record, and I am a little bit afraid the sheer weight of the various cords and decorations she’ll be wearing at her (early) graduation will dislocate one of her shoulders. Point being: This is not someone who’s chosen to lie down and wait for her health issues to resolve before seizing the world by the short hairs.

All of that said, here are a few 100% True Medical Stories I would dearly love to tell every anti-universal-healthcare-but-pro-health-regulations-made-by-non-medical-people politician while simultaneously punching them in the face.

Fun Story, The First: One of Chickadee’s EDS complications is POTS, which means her heart beats veryveryvery fast a lot of the time, but especially when she stands up. This is problematic for all kinds of reasons, including but not limited to: it makes you prone to passing out, it makes you feel like garbage, it can mess up your digestive and urinary systems (basically your fight-or-flight response is being constantly triggered, which tells your large intestine and bladder to shut down, because there are no potty stops while running from a hungry tiger), it can make regulating your body temperature very difficult, etc. IT IS BAD, is what I’m trying to tell you. So Chickadee sees a cardiologist because this is a heart issue, sort of (really it’s an autonomic nervous system issue), to try to get her heart to chill out.

The cardiologist explained that because her blood pressure is also very low while her heart rate is very fast, we would first have to increase her blood pressure (with meds) before bringing her heart rate down (with meds) because “meds which decrease heart rate also decrease blood pressure.” Thus began a fun stint on a hard-to-obtain med (often she would need to call several pharmacies to locate it) which, at the initial dosage, did absolutely nothing to increase her blood pressure, and at the increased dosage sparked a trifecta of side effects so horrible I spent a solid week on the phone, in the car, in various doctors’ offices, and even at the ER, quietly hissing at my beloved firstborn the entire time, “I love you and I have not invested all of this time and money into keeping you alive just to have THIS be the thing that kills you.” It was a special time. She has since successfully been weaned off that med.

BUT GUESS WHAT! There is a medication which is often used to lower a patient’s heart rate without affecting their blood pressure, and it’s considered by many to be the gold standard of medication treatment for POTS. We did not know about this medication when Chickie started with the cardiologist, and he never mentioned it. I found this very odd. So I brought it up at her next appointment after the whole med-trying-to-kill-her thing, and we had an interesting conversation about it. Turns out, he loves that med. It’s the best treatment for patients like my daughter. It apparently works great and has a low incidence of side effects. It’s also, to quote the MEDICAL PROFESSIONAL TREATING THE PATIENT IN QUESTION, “Just about impossible to get insurance to pay for it because it’s expensive.” Oh, WELL THEN. Cool. Chickadee is now ramping up on ANOTHER med designed to raise her blood pressure so that she can finally (hopefully) begin the Beta blockers which might lower her heart rate. That is, IF it works. Will it work? WHO KNOWS! What a fun mystery! The doc does say that if this doesn’t work, or if the blood-pressure-raising med works as it should but the Beta blockers don’t lower her heart rate (which is apparently a thing that sometimes happens), THEN we may have grounds to appeal the insurance to cover the SINGLE med which doesn’t mess with your blood pressure at all, which is arguably safer all around. Cool, cool.

Fun Story, The Second: I’m going to be vague about the details of this particular thing in the interest of privacy, but suffice it to say it involves a different medical issue which is, like POTS, a known comorbidity with Ehlers-Danlos, and (again, just like POTS), something which has a BIG impact on overall health and quality of life. Back in December—after multiple rounds of extremely unpleasant medical tests with a specialist and a failed stint on a sometimes-helpful medication which made everything worse—Chickadee had a small surgical procedure to connect a temporary device used as a treatment for her particular issue when other attempts at treatment have failed. If the device had proven successful (it did not, because this kid is also the queen of Failed Medical Interventions) (this is pretty common with EDS, actually), she would’ve had a second procedure to make it a permanent thing. Unfortunately, it was not a good solution for her, so after the trial period, the temporary device was removed.

[Sidebar: The first medical procedure Chickadee had involving anesthesia since we began the Endless Parade Of Medical Interventions was an endoscopy which ended with her waking up combative and angry, which was Not Fun for anyone involved. We now describe this to her doctors before any procedure, and I’ve learned this is called “emergence delirium” and is common in young adults, but it can sometimes be avoided if you let the anesthesiologist know the patient is prone to it. SO! Since then, my darling stubborn cactus of a girlchild has woken up from every single surgical procedure docile as a lamb and thoroughly DELIGHTED to see me. “Ohhhhh! Hi, Mama! Hi! I LOVE YOU!” she croons, even though sober-Chickie hasn’t called me Mama in years. Drunk-Chickie thinks I am the greatest thing since sliced bread, and I am here for it. It is literally the SINGLE silver lining to all of this crap.]

Where was I? Oh! Right. So the device was implanted over winter break, in December, and removed in January, before she went back to school. We tried, it didn’t work, on to the next thing.

And then we started receiving ominous bills. Because of course we did! Now, if you have managed care health insurance like we do, you likely know the routine: You receive a big bill that says something like, “This is not a bill, we’re just letting you know that this is what was charged and your insurance has been billed!” And if you are me you put said not-a-bill in a stack on your desk and hope that’s the end of it. But then we got another one, only this next one said the insurance had refused payment, and this was still not-a-bill because the claim was being appealed and they needed more information from the doctor. Um, okay. But then there was another one, saying the appeal had been denied and perhaps we should contact our insurance. And THEN I got a phone call from the doctor’s office from a VERY apologetic woman who explained that the appeal process had been exhausted and could we please call the insurance company to see if they would listen to us? And I laughed, I LAUGHED, because what could we possibly say that isn’t already, I don’t know, IN THE MEDICAL CHART? But she was serious.

The bill in question, by the way, for the 15-minute surgical procedure, is for $16,000. I mean, respect to the insurance company, I guess, because that’s a big number and I don’t want to pay it either.

So I called the insurance company yesterday, and I talked to Vicky. Vicky is GREAT, y’all. Seriously. Vicky for president, because Vicky honestly seems to want to help us get this resolved. I spent over an hour on the phone with Vicky, and while I guarantee you that the insurance company is not paying her enough, I do think they could save themselves a lot of money and time and employees by not being so INHERENTLY TERRIBLE in the first place, y’know?

The doctor’s office told me that the appeal was listed as denied because Chickadee didn’t take the recommended medication for a full 12 months. But… she took it for a month (maybe even two?) and it made her WORSE so it was discontinued. Trust me when I say a full year of that med would have—I AM NOT EXAGGERATING—caused major organ damage at the very LEAST, if not resulting in actual death. This is in her chart, of course, but the hope was that the actual patient (or, in this case, the patient’s angry mother) relaying this information might make a difference.

But Vicky told me that’s not what she was seeing on her end. On her end, she said, she was seeing that the doctor had failed to request a pre-authorization for the procedure. So she called the doctor’s office, and then came back to tell me that the office is claiming they called and were told they didn’t need one. There’s more, but suffice it to say that VICKY IS ON IT, she promises to call me back later this week after unraveling all of this, and we are very much hoping not to be on the hook for $16,000.

In the meantime, please take a moment to sit with the reality that my chronically-ill 20-year-old who is just trying to live her life was asked by the doctor’s office which has thus far been unable to resolve her medical issues (but at least has made her very uncomfortable in the process!) to please call her insurance company and beg for this bill to be paid. I hope this makes you as uncomfortable as it makes me, because WHAT THE WHAT, people.

Fun Story, The Third: While home doing the Winter Break Tour Of All The Doctors (not to be confused with last week, which was the Spring Break Tour Of All The Doctors), Chickadee went ahead and saw her primary care doctor, who is also my primary care doctor, to go over a few things, get new referrals, etc. Anyone on a managed care plan know that basically the ONLY thing you can do without a hassle on an HMO is see your primary care doctor, right? She saw the doctor. She paid her copay.

… and then we got a bill in the mail about a month later. Soooo I called the billing office for this particular doctor (conveniently located in Texas because Reasons™) and said, “Hello, we have this bill, but I don’t know why we have this bill.” I spoke with a very nice customer service representative who did a lot of clicking around on her computer for about half an hour, and eventually she told me that they had coded it wrong when they sent it to the insurance company; it was their error, they would resubmit.

Thank goodness that one was so easily resolved! HAHAHAHAHAHAHAHAAAAA!

Listen, I shouldn’t complain, because it’s not like this particular bill is for $16k like the other one, but when the SECOND bill arrived yesterday, this time covered in YOUR PAYMENT IS PAST DUE language, I was Not Pleased. I called the billing department in Texas (again) today and explained what I had been told the first time I’d called with the first bill. This rep clicked around a while and said, “Well, I’m going to need you to call your insurance company.” When I asked why, she said, “It says here that the doctor’s address needs to be updated and that must be done by the patient.”

First I made the same face you’ve seen on a hundred memes when someone is trying to process information that claims down is up and vice versa. Then I managed to sputter, “That… that cannot possibly be a thing. That makes no sense.” But the rep claimed that this was the only way to get it resolved.

So. I. Called. The. Insurance. AGAIN. As I was going through the seventeen required menus to reach an actual human, I wondered if I would reach a rep as kind and helpful as Vicky had been yesterday, because—while it’s all still a giant clusterfuck and I’m not sure it will be resolved in our favor, which is really the icing on the cake when you’re dealing with these sorts of medical issues in your loved ones—at least I’d felt like it was progress. I was connected to a rep, and that rep said, “Thank you for calling [Giant Evil Insurance Company], my name is Vicky, how may I assist you today?”

“Vicky!” I shrieked. “I just talked to you yesterday! What are the odds of getting you AGAIN? THIS MUST BE MY LUCKY DAY!” Poor Vicky. She should be very flattered but I think she was a little scared. Once I reminded her of why I was SO excited to talk to her again, she remembered me, and with Vicky-like ruthless efficiency, she began looking into this particular unpaid claim.

First, I told Vicky what happened when I called Billing, and she started laughing. If a provider address needs to be updated, that can never be handled by the patient, anyway, she said, so what the billing rep told me made zero sense. Next she told me the claim had never been resubmitted. AND THEN—I hope you’re sitting down—she told me that it appeared the bill hadn’t been paid because this doctor is out-of-network on our plan.

“Vicky,” I said, a small tear forming in my eye because I feel like Vicky and I are close now and this was not what I’ve come to expect from her, “That’s her PRIMARY CARE doctor. Also it’s MY primary care doctor. I’ve been seeing her for forever. YEARS. The one time we had a doctor that moved out of network y’all sent us no fewer than 10 letters warning us that this doctor would no longer be covered. I promise you this doctor is in-network. Seriously.”

Vicky had stumbled, for sure, but Vicky got right back up again. “Allow me to place you on hold for a moment please,” she said. When she came back, she apologized profusely, said that I was absolutely correct, and she was going to need to escalate this to get it taken care of but that was no problem whatsoever. ATTAGIRL, VICKY! Clickety-clickety-click, Vicky typed away for a bit, and then she said, “You know, you are always very kind to me when you call, and I appreciate that so much—” (I’m “always” so kind when I call, these two times I have called her, over the last two days; I mean, OBVIOUSLY, Vicky feels our connection too, amirite?) “—and I am going to tell you what I’m writing here so you understand. The problem is that sometimes when people are nice, escalation gets put aside, you know what I mean? So I am writing here that you are an ‘irate member’ because that word gets flagged for escalation. Is that okay? Because you’ve been so patient, and I am just embellishing a little to make sure this gets handled quickly.” Sooooo… Vicky told me that she appreciated my politeness but that polite people don’t get helped, so she was going to say I had been a jerk so that I would get help. That seems totally copasetic. Yep.

In the time it’s taken me to write this post, Vicky has already called me back to let me know that the (small) second bill has been resolved. She also said she’s still working on the (large) other one, and will be in touch later this week on that one. VICKY FOR PRESIDENT. She is too good for this world, and certainly too good for my insurance company.

In Conclusion
1) What if we didn’t have the knowledge or the resources to continue fighting for appropriate healthcare for my daughter after the insurance-approved geneticist refused to fully evaluate her?
2) What if we’d had the knowledge and support to locate the doc who DID end up diagnosing her but didn’t have the money to pay for it?
3) What if I didn’t have the time and flexibility and patience to help my kid with all of these appointments and phone calls and keeping track of meds and side effects and general management of a complicated health condition?
4) What if I wasn’t the kind of persistent squeaky wheel who will spend hours and hours on the phone dealing with this stuff?
5) What if I’d never remarried and we didn’t have a second family income to rely upon as my time is spent more in the service of my supposedly adult child’s care than on my own job?
6) What if everything I just told you was the tiniest fraction of the healthcare-related bullshit we’ve been wading through for the last few years? BECAUSE IT IS.

Healthcare in America, ladies and gentlemen. This is GOOD healthcare—a plan of comprehensive coverage, and our family so much more privileged than many. This is as good as it gets short of being independently wealthy, and I’m sorry, but it is not good enough. Not even close.

I do not have a tidy conclusion to this particular screed.

40 Responses to “Our healthcare dollars at work”

  1. 1
    Brenda March 26, 2019 at 2:45 pm #

    I work at a dental office, and while dental insurance isn’t as bad as medical, it’s still ridiculous and getting worse. I’ve had claims be denied because the plan only covers patients of that age on their parent’s plan if they are a full-time student. So I, the dental office, has to call the patient’s parent and ask them to mail in a thing saying their kid is allowed to be covered under the policy.

    I’ve also had one insurance company stop paying all claims from our office, and when I called them to find out why they said our address didn’t match the database. We had not moved. This had never been a problem before. I think I had to change “St. Paul” to “Saint Paul” and hope that fixed the problem, but then I also had to call our software management because you have to have a special password to change the practice info.

    Sometimes my boss makes me send in strongly worded appeal letters because politeness just doesn’t work when you’re trying to get basic procedures covered. Bless Vicky for working the system to get what you need. We need more people like Vicky running the whole dang company.

    • 1.1
      Jessica (tc) March 27, 2019 at 6:20 pm #

      I really hate how dental and medical (and optical) are all separate. Over the past year, I’ve been dealing with a problem that my doctors and I thought was medical, so I’ve been going from doctor to doctor. I finally get in to see an ENT who basically says, “This is a jaw problem. Go to your dentist.” Two weeks later, I get into my dentist and she says, “Oh, yeah. We treat this all the time. Here are some muscle relaxers, and let’s get you into treatment immediately.”

      I already fought with my medical insurance for not covering a splint last year, when my dentist put it through them. They were supposed to cover it, but there were all sorts of reasons why they wouldn’t. I just needed some relief, so I eventually just paid for it. (But, as Mir said, I’m lucky that my husband and I are both working at jobs that pay enough that we could do that. Even three years ago, that wouldn’t have been possible.)

      I think insurance in general is just getting worse and worse, and I feel for the people in the dental/medical offices who have to deal with the companies and irate patients. (It’s pretty obvious where I stand on insurance companies and the piecemealing of our bodies across multiple types of insurance and providers.)

  2. 2
    Kim March 26, 2019 at 2:55 pm #

    That’s because there’s isn’t one. Our healthcare system is an abomination, and this morning’s news is going to make it worse.
    I…got nothing, Mir. Not even an “I’m sorry” because I’m back to being so angry at the blindness, the greed, the lack of empathy that our country is going through right now.
    You know what, though? Yea you for getting on the phone and dealing with it, because I have to gird my loins for days to get myself to dial a 1-800 number. 2 days in a row? You are amazing and you have pretty hair.

  3. 3
    el-e-e March 26, 2019 at 3:00 pm #

    I WANT TO CRY RIGHT NOW. Am so sorry you have to deal with this!!

  4. 4
    KC March 26, 2019 at 3:20 pm #

    Screed on!

    Also, I wish our country had a massive fleet of, basically, social workers/counselors, to help all the people who need help *manage* all the things – sometimes there are resources people don’t know about! Sometimes people are just tired and overwhelmed and literally can’t spend the hours on the phone trying to detangle these messes. Sick people; old people; poor people; grieving people; kids who have aged out of the foster system; it would be great if anyone who needed help could just call in to one place and get a caseworker who would help them find solid ground again and who would have the detailed experience to know what good options are out there for their situation and such.

    More oversight for insurance companies and spuriously-denied claims would be nice, too; legal penalties for shenanigans would be good. I mean, legal penalties that do not require very-ill people to navigate a full-on lawsuit process. Also, it would be good if insurance companies had to repay the time and effort spent in getting wrongly-denied claims investigated; kind of like a grocery guarantee: if we ring it up the wrong price, you get the item free! That seems like it might reduce the motivation for fake-denying claims or just being veeery sloppy and “accidentally” resulting in denied claims; at present, it is in insurance companies’ financial interests to deny lots of claims that are legitimate, with odds being good that some people just won’t fight, or won’t fight hard enough, and I would like this motivation to *not* be weighted that direction. (but: Vicky for President! Not all the employees are evil/sloppy!)

    (My insurance company abruptly terminated coverage [no advance warning] to the medication you are probably talking about, after I had been on it for a couple of years. On re-appeal, they finally re-granted it three months later with a letter from a random cardiologist saying “why would you not give this patient this medication? did you even look at this?” except less coherent because it was obviously voice-transcribed. Fortunately I had already been tapering off it for a month before they cut it off, so I still had enough to complete the taper before I ran out. As the taper demonstrated, it turned out that it did not actually work on me and I did not need it, so that, by chance, I did *not* have to go cold-turkey from a tapering-is-necessary function-sustaining medication and then be off it for three months before the insurance company got slapped by their own cardiologist. But I could have, thanks to Brilliant Move By Insurance Company! Isn’t that lovely!) (With some of my medications, that would actually be *really* stupid of them, because putting an adequately-ill person into crisis tends to land them in the hospital, which would be more expensive to the insurance entity in total than the medication, but short-term gains in our department are sometimes the only thing visible through corporate glasses…) (I would also be fine with the length of the appeals process if they’d continue coverage of the prescription through the appeals process. But suddenly cutting off coverage to a medication and then dragging your feet through the appeals process? Nooope.)

    (also: sometimes there are Patient Assistance Programs available, especially for when insurance has refused to cover something. I’m on a phenomenally-helpful medication (it reduces vasodilation while also increasing RBC = more oxygen to the brain more consistently) that our current insurance refuses to cover, but a Patient Assistance Program does. It does take some paperwork and an annual hoop-jumping extravaganza (having to call three different entities to chase paperwork through, if they don’t manage to get around to it without being chased…), *but* it means I have access to the medication that keeps me able to not need home health aide assistance. And it’s free. Definitely worth the hoops.)

    Anyway. If we could get competent universal health care, that would be lovely. If we could care more about humans than corporations, that would be lovely. Until then, screeds.

    • 4.1
      Mir March 26, 2019 at 3:24 pm #

      Vicky for president, KC for Attorney General! I absolutely LOVE the idea of penalties for this stuff. It’s all predicated on the reality that very sick people often simply cannot manage the appeals process. It’s evil.

      • KC March 26, 2019 at 7:07 pm #

        Thank you! :-)

        I’m way too extreme to be acceptable as Attorney General, however; in addition to thinking that insurance companies should be legally slapped for weaseling, I also think that signing legal rights away, particularly the right to class action lawsuits, should not be allowed as a bulk default (as per agreeing to arbitration instead of legal courts in all sorts of work contracts, EULAs, Amazon terms-and-services, etc.).

        Partly that’s because honestly, what choice do you have as a low-income worker in an area where all employers have the same contract clauses? or at an ER? etc. – and partly that’s because if companies can bleed literally millions of people, illegally, of amounts that are small enough that it’s not worth individually fighting, I suspect invoice-inflation and new fraudulent “fees” and “surcharges” will slowly become even more common practice than they already are – even just $1/month over a cell phone or internet service provider’s entire customer base is a *lot* of money, as is the money they can get from selling customer details to interested parties (which should also be illegal without the customer’s active consent). I would like to demotivate scummy, illegal behavior.

        But yes. Betting on people being too sick (or poor, etc.) to fight for justice and profiting from that is just plain evil.

  5. 5
    Liz March 26, 2019 at 3:41 pm #

    May I share your post on Twitter and Facebook? Because HOLY GUACAMOLE.

  6. 6
    Mom24 March 26, 2019 at 3:50 pm #

    I am so sorry. And angry. And WTF??? And, sadly, not surprised. That all sucks. Hope she starts getting real help, and better, soon.

  7. 7
    Kelly March 26, 2019 at 3:59 pm #

    Man I’m sorry you guys are also going thru the gauntlet of mystery illnesses. My 14to has been battling some mystery issues since January and pretty much every Dr has washed their hands and say it’s in her head. Its frustrating for sure!! I hope you get things settled with insurance and continue to get the answers she needs!

  8. 8
    Karen R March 26, 2019 at 4:01 pm #

    Wow. I thought HMOs were supposed to prevent that nonsense. We’ve been with Kaiser for decades. Even when they sent us outside of Kaiser, we didn’t have these issues. The system is so messed up, and I’m so sorry you are stuck in the middle of it.

  9. 9
    Sara Ganey March 26, 2019 at 4:45 pm #

    The insurance situation in this country is, for lack of a better word, BONKERS. Our family is lucky to be on COBRA right now (HA! Who’da thunk I’d consider COBRA lucky?) and due to my husband’s work situation, we are okay with it. BUT. We are looking down the barrel of having to find our own insurance and that is a frightening prospect on all fronts.

    Also, I work in a counseling office with mental health providers. I cannot emphasize to you the lack of coverage for mental and behavioral health in this country. I am beyond angry, daily, at the healthcare situation in the United States.

    And please don’t get me started on Prior Authorizations. I have stories that would flip your hair back. *sigh* Now I want an adult beverage or ice cream.

    I hope things work out for you and your family and that things get easier from here. VICKY2020

  10. 10
    Veronica March 26, 2019 at 4:51 pm #

    I have been reading your blog for almost 12 years now, which. Wow. But I’d totally fallen off the blog-readjng wagon until you popped up on FB today.

    Which, hey, EDS. That’s my thing too. (Diagnosed at 20, after being ridiculously awfully sick for 7+ years). I so feel your pain. We have socialised medicine, which helps, but also doesn’t, because everything thinks everything should be someone else’s job.

    I really hope you can find some meds for the POTS. I asked my doctor about meds and got shrugged shoulders, baffled looks, and told to eat more salt. Noooot so helpful.

    Hang in there. There’s a huge community of EDSy peeps online sharing info and tips and solidarity, so I hope Chickie has lots of bendy friends to sympathise and share info with.

  11. 11
    Chris March 26, 2019 at 4:55 pm #

    May I suggest, if you haven’t already, let the doctor know that their billing service is inept or lying to patients? The person who said you had to call to update the doctor’s address either outright lied to you or has no idea what they are doing. The chiropractor I work for has just fired the billing service he used for 10+ years because they were purchased and the new company sends everything out of state to be processed. Honestly, even though I didn’t want to bring it in-house, doing so was the best thing he could have done. We have so much more control now and I have a marketable skill should I every want to leave this office.

  12. 12
    Karen Milano March 26, 2019 at 5:01 pm #

    Holy Fuck! That’s all I got.

    VICKY 2020

  13. 13
    Laura March 26, 2019 at 5:25 pm #

    You know what’s really ironic? POTS read backwards is STOP (the madness?).
    💓

  14. 14
    kellyg March 26, 2019 at 5:38 pm #

    The face punching is only to ensure that the anti-universal healthcare politician never, ever forgets what non-members of Congress go through. Listening to some of those politicians, you can tell they have never called their insurance company to argue about a denial or been caught between the medical provider & insurance company.

  15. 15
    hokgardner March 26, 2019 at 7:36 pm #

    I have years of similar horror stories about insurance companies. I have panic attacks when I see their envelopes in the mail.

    Last year I paid close to $6,000 out of pocket to make sure the mass in my breast wasn’t cancer because my insurance plan didn’t cover diagnostic testing.

    Health care is my number 1 voting issue.

  16. 16
    Niki March 26, 2019 at 8:25 pm #

    I am so sorry that you and she are going through all of this crap. We now have 3, count ‘em, 3 chronically ill folks in our household, so there are some insurance shenanigans going on pretty much all the time. We have the fortunately/unfortunately game going on right now – unfortunately hubby is out of work right now, so unfortunately we are paying huge money to have him on my insurance. Fortunately, part of my job is being the benefits coordinator for my employer, which gives me an in with our benefits broker, and a direct person to talk to at our insurance company when they get up to f’ery. It doesn’t fix all of the expensive stuff like deductibles and out of pockets, but at least I have someone to go to. I’m glad you have Vicky.

  17. 17
    Mena March 26, 2019 at 9:47 pm #

    Omg – this is my worst nightmare. Fingers and toes crossed for you and yours. Sending a lot of good vibes – also yay Vicky!

  18. 18
    Meh March 27, 2019 at 6:22 am #

    As someone who’s worked phone support before, I feel for Vicky and hope she doesn’t burn out. She sounds amazing and I’m glad you got to someone who actually cares.

    You know, I live in a country that has universal healthcare. It’s an imperfect system. There are waiting lists for procedures. The doctors are shittier than private practices, usually (of course there are amazing exceptions, as with anything). When you pay for services privately, you get a higher level of care and attention. And yet I would never, ever exchange it for the situation where you’re battling an illness or injury, and someone’s trying to nickel and dime you for it. Or you have to weigh whether your issues are bad enough to call the doctor, because you can’t afford it. At least here you have an option to get treated.

    There will be flaws in any man-made system because humans are fallible. I could tell you stories about the stuff I’ve personally encountered. But this system where money decides whether you get treated is awful and cruel.

  19. 19
    Mary K. In Rockport March 27, 2019 at 6:23 am #

    HMOs are the worst. “Managed Care” – ha! We were forced into an HMO when our insurance company terminated our former family policy. We were not eligible for a group rate, but clung to BC-BS because I had had that company from childhood through various jobs, and because of pre-existing conditions, knew I couldn’t switch companies. So we stuck with BC-BS even though monthly premiums were MORE THAN OUR RENT because we had kids and couldn’t be without it. The kids’ pediatrician complained that I only brought them in when they were sick and never for yearly check-ups. I had to explain to him that insurance didn’t pay for well child visits, and we couldn’t afford them. So he, being a very nice guy, would squeeze in a check-up “under the table.” Then, when our kids were college students, they got bounced from our plan, and we had to buy separate policies for each of them. Expensive! Our youngest turned 26 the year Obama came in – yes, a BFD as Biden said, but too late for us. We are now on Medicare with a supplemental BC-BS policy, and IT IS GREAT! Except for prescriptions which are spottily covered.
    If I could line up tRump, McConnell, and a few other Repugnants including Lindsey Graham in front of a firing squad, it would be a glorious day. And they would go straight to hell for gleefully intending to kill Obamacare.

  20. 20
    Mary K. in Rockport March 27, 2019 at 6:32 am #

    I forgot to add that I spent days and weeks of my life during the HMO years on the phone and filling out paperwork to get BC-BS to pay for the simplest things. Meanwhile, the insurance company CEOs make a zillion dollars. It was enraging. I used to address envelopes to “Blue Cross & Blood Suckers of Massachusetts.”

  21. 21
    melissa c March 27, 2019 at 7:01 am #

    I feel this post deeply.

    Seven years ago, I was pregnant with my second. I was a relatively healthy person, but had had my first kid via urgent c section because at 36 weeks with no leaking I had almost no amniotic fluid.

    At 20 weeks, they did the standard anatomy scan. Baby was healthy with plenty of fluid cushion and another girl.

    Mir, because they revealed the baby was a girl, the insurance rejected the claim. They said the procedure was EXPERIMENTAL. The standard 20 week u/s. It wasn’t 3D or 4D or anything fancy.

    I had a file 7″ thick by the time the appeals process was over. My husband’s company hired an insurance specialist to help us. They took it to our state’s insurance review board. Finally, the board sent us a letter saying “This scan has been a standard of care since before the patient (me) was born. It is crucial to determine the health of the fetus. There is nothing experimental and we order the insurance company to pay for this procedure.”

    We got that letter when the baby was 9 months old. It was almost a full year of appeals, phone calls, letters from my doctor, discussions with the billing department and tears from me.

    Also, because of the history of low fluid, I was ordered NSTs every week. Those were all denied as well, but then mysteriously paid once that letter was received.

    Utterly ridiculous. What if I didn’t have the knowledge or time to fight? We would probably still be paying for her prenatal care!

    • 21.1
      Mir March 27, 2019 at 8:31 am #

      !!!!

  22. 22
    Carrie On March 27, 2019 at 8:50 am #

    Hmmm, I guess we need to be an ahole with our insurance company. Got a 2000 bill for surgery a year ago. We were told to pay 20 of it because we had reached our OOP max for last year and that was it. Now insurance won’t pay it and the office wants us to pay for it and we’ve called and called and the reasons insurance won’t pay for it have changed at least 4 times and I just wanna cry because we had to pay the OOP max 2 years in a row for the issue to the tune of $12,000 and haven’t even recovered from that and I just don’t have $2,000 lying around to pay them and it makes me so, so, so angry at our Healthcare system.

    So you have my empathies. I’m glad you are able to help your daughter with this mess, and I’m grateful you recognize the privilege inherent in being able to handle it all and are extra pissed for people who can’t.

  23. 23
    Melissa March 27, 2019 at 10:38 am #

    This makes me so, so angry. I’m glad you found someone who cares and is helping because that seems to be a rarity. People should not have to be choosing whether to have their health cared for properly or, you know, eat.
    Vicky 2020

  24. 24
    Charlie March 27, 2019 at 12:57 pm #

    Wow! I’m in the UK so no problems with admin and payments, but we wait a lot longer for appointments. I’m thinking that mostly the wait is the easier option. The US medical insurance system sounds like madness!

  25. 25
    ccr in MA March 27, 2019 at 1:22 pm #

    How insanely maddeningly frustrating. Basically, batshit insane. Thank heavens for the silver lining of Vicky, but good grief. Way to make an awful situation worse, “health” insurance.

  26. 26
    Brigitte March 27, 2019 at 3:12 pm #

    My eyes actually became damp reading this, and our health insurance issues ate but a drop in the bucket compared to yours. Though I can concur on the All Hail to all the “Vickys” out there. One claim we had went in circles for over two years and my file on that single claim was an inch thick, before I got my own Vicky who was just like “What’s been wrong with all these people!?” and instantly fixed everything.

  27. 27
    Tracey March 27, 2019 at 3:15 pm #

    Ugghhhhh this makes me so mad for you, for us, for everyone in this country, even the misguided (I said stupid at first but that seemed aggressive) people who are against universal health care on principle. Those that are privileged enough (yes, it’s a privilege, because people like your daughter or my son did NOTHING to be born with their respective diseases) to not realize how these kinds of things send a message that people with complicated, expensive health issues don’t deserve to live. Maybe I’m prone to hyperbole too, but I’m not sure what other message to take. It’s so maddening.

    On a related note, we had a week-long PICU stay about a month ago. Looking at the EOB, the charges just for the hospital services were north of 85k. With our insurance “contracted discount,” the charges were brought down to around 19k. Like….how can a hospital stay in business if they are getting paid for a fraction of their services? Something is fishy. And if we didn’t have (pretty good) insurance, would we be on the hook for all 85k?? It’s a mess and it can’t go on the way it has. How can people not understand this.

    Anyway-sorry you guys are going through all this. My long rant was pretty much to say that.

  28. 28
    Meg March 28, 2019 at 9:44 am #

    As always, your writing adds humor and interest to an infuriating situation. The effort it takes to get covered services paid for is outrageous. it is unconsionable that even with high cost health insurance service is so poor. Glad to read your words again here.

  29. 29
    Diana March 28, 2019 at 1:34 pm #

    Dear Mir,
    I’m so sorry about this insanity. The same “what-if” thoughts and questions run through my mind on a daily basis, as I am currently dealing with my daughter’s mental health struggles. I have also been on the hamster wheel that is a genetic disease in an HMO–including private pay providers, private genetic testing, push, push, push, etc., etc.

    I just want to thank you for the Chickadee Chronicles from several years ago. I have been going through your archived blog posts and have found: warnings, comfort, confirmation that I’m doing the right thing, heads-up on what could be next and some emotional reinforcements for the journey of being the one she simultaneously hates and needs right now. Thank you for keeping those moments available and for writing them in the first place.

  30. 30
    Chuck March 29, 2019 at 6:44 am #

    Your post is giving me flashbacks of my “fun with cellulitis” tour from 2015/2016, specifically the time I was in a rehab hospital, had a (recommended) surgical procedure done at another hospital, which they couldn’t perform at the rehab hospital due to a lack of facilities, and the insurance company refused to pay for the ambulance ride to and from that hospital. After calling them they finally paid for the trip there, but not the trip back. Perhaps they felt I should hail an Uber or something? After many, many, months of calling, appealing, and working with the ambulance company I finally got a rep like Vicky on the phone at the insurance company, and they paid for the second trip. I’m really sorry you’re having to deal with this with Chickadee, it totally sucks and I’m not sure what the answer is, but good luck with everything and I hope things get favorably resolved for you, soon.

  31. 31
    Jena March 29, 2019 at 2:25 pm #

    I have Medicaid and I entirely understand the jumping through hoops. I ust had hip surgery, arthroscopic, and while I haven’t gotten anything from the Powers That Be, trying to get an appointment with physical therapy is proving to be difficult. I can imagine how frustrating this must be for you. We REALLY need universal health care. STAT!

  32. 32
    JMH April 1, 2019 at 1:55 pm #

    Totally ridiculous! My very healthy daughter had ACL and meniscus surgery on her knee last September. This was due to a volleyball injury. Obviously, she needed Physical Therapy after surgery. Well, our lovely insurance has a HARD LIMIT of 20 PT visits per year. Well, as a 17-year-old with many years of needed a healthy knee in front of her, we asked for more PT sessions since it would take her up to a year to fully heal (per her surgeon). Joke was on us. My favorite part was when the Denial of Appeal letter stated “We know the physical therapy sessions are medically necessary, we are denying your appeal” W.T.F ?!?! Even her surgeon was disgusted with the response. Oh, and the letter was signed “Deb J.” So, you can’t /won’t even sign your name to the letter?? UGH

  33. 33
    Jan April 1, 2019 at 1:59 pm #

    I learned a new word today from one of those Word of the Day things: kakistocracy.

    It means “government by the least suitable or competent citizens of a state.”

    At least we have a label for it now.

  34. 34
    elizabeth April 3, 2019 at 6:25 pm #

    I occasionally help our nurses get prior authorization for procedures.

    I am very nice but I insist upon speaking to the doctor who reviews appeals (every plan has one). Before I ever present the case I ask for their full name and license number so I can put it in the chart (“in case the family needs it”). I’ve gotten a “yes” every single time. EVERY single time.

    Amazing how being personably liable for health outcomes leads to better choices.

    Hope Vicky has the best life ever!

  35. 35
    Joan April 6, 2019 at 12:24 pm #

    It’s depressing/infuriating how many people, including me and 3/4 of the the people I know, have stories like yours. I have found most of the customer service people at my mom’s healthcare company to be quite helpful. But why should we have spend so much of our time talking to them/waiting to talk to them? If the insurance just paid for what they should in the first place, the insurance companies could save enough on customer service people that they could use it for other things, paying for medical expenses, for example.

    • 35.1
      Joan April 6, 2019 at 12:26 pm #

      And I also live in Georgia. And dumbfuckery is the perfect word for just everything our legislature does.

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