Remember the iUniverse Scam?

Remember the iUniverse Scam?

Remember that iUniverse scam reporting I did in the tweens? Or should I say scams reporting? I’m bringing all of those posts back. Yes, they’re over a decade old, but it occurred to me that importing that work here might serve a few purposes.

First, it validates all the extensive research and writing I did on Author Solutions and iUniverse at the time. And there are a lot of articles. I know because I just spent a lot of time editing links on The Complete Index of iUniverse and Author Solutions Complaints.

Second, it helps me bridge the before-cancer and after-cancer identities I sometimes have difficulty connecting. I need a project, kids.

So tell your friends, because I’ve already been hit with bot traffic for this. I’m not sure if it’s a nefarious keyword war and Author Solutions is trying to take out what it sees as competition or if it’s a DDoS attack or what.

What I do know is how to block bad traffic.

Finally, as you know, I’ve been pondering how to make this site pay for itself (and maybe an MRI) and all of my old content should be helping me more. When I started over here, I saved my old stuff to a WordPress.com site. I lost a lot of the images from that time, but the text is here. And so am I.

Defund the Hammers

Defund the Hammers

Steve Tamari is a history professor at SIUE, a small college that is practically in my back yard now. While he was protesting the genocide of Palestinians with students and faculty at Washington University in St. Louis, he was beaten by cops. Defund the hammers.

They broke Tamari’s ribs. They broke his hand.

Three other officers stood in front of [witnesses] as [officers] worked to zip tie [Tamari’s] hands to block press and protestors from recording the scene.

Riverfront Times

The people who wonder what I have to hide apparently have something to hide.

The cops protect and serve their own while the “lucky” living pay in taxes, in trauma, and in grief.

Metro St. Louis has a cop problem. Add that to my own history (hear my story in this Tangled Talk episode) and in a “debate” about the usefulness of police, I will start speaking too quickly, at too high a pitch until I hyperventilate.

So when I say I was for defunding the police long before cops had Facebook apologists, I’m not riding some leftist hippie bandwagon. My distrust of cops is not hypothetical. They are the embodiment of the saying “when you’re a hammer, everything looks like a nail.”

It’s not a question I’m here to debate with anyone. I know what I lived. I know what others have lived. I know what people are right now living.

I didn’t mean to watch it or need to see it to believe it, but I saw the video of Mike Brown’s murder in 2014. Then I saw people clamoring to protect Darren Wilson after. It changed me irrevocably.

I don’t—can’t—spray paint bridges and overpasses with “ACAB,” but I nod when I see it.

Today I learned Steve Tamari is the neighbor of someone I know. The violence is not isolated.

Defund the hammers.

And if anyone asks why I’m like this, tell them the unvarnished truth. Tell them cops made me this way.

7 Signs of a Bad Doctor

7 Signs of a Bad Doctor

I’m sharing personal anecdotes with these 7 signs of a bad doctor for a few reasons:

First, I want you to know that if you’ve got a crummy doc, you’re not alone. So many people can relate. (The hashtag #DoctorsAreD*ckheads existed on Twitter for a reason!)

Second, it might help you see warning signs in your own care. Maybe you just don’t like your doctor; maybe your doctor is genuinely terrible.

Remember: doctors, like anyone else, are not good just because they chose a profession of prestige and authority. They still have to be competent at what they do—just like the rest of us.

So what are the 7 signs of a bad doctor?

  1. Your Doctor Doesn’t Listen
  2. Your Doctor Blames You
  3. Your Doctor Makes You Feel Rushed
  4. Your Doctor Doesn’t Ask Clarifying Questions
  5. Your Doctor Takes It Personally When Medications and Treatments Fail
  6. Your Doctor Isn’t Personable
  7. Your Doctor has Bad Patient Reviews

7 Signs of Your Doctor Sucks

1. A Bad Doctor Doesn’t Listen

The worst doctor I ever had—The Rheumatologist from Hell™—would barely make eye contact with me. He was always scribbling something in my chart, unengaged and uttering only the perfunctory mm-hmm. At a time when I felt afraid and unsure, this was definitely not helpful.

I let his board know it, too. (Please report bad doctors whose actions cause you actual harm.)

Was he a terrible diagnostician or just bad at relating to me? Either way, I paid a significant price as a chronic pain patient, and I wonder now how many others did too. It’s a big deal and harmful—sometimes life-threatening—to be ignored. Ask me how I know.

2. A Bad Doctor Blames You

There were only so many times I could be told that diet and exercise were my problem before I realized the doctor was making my problem worse by taking the easy out.

As it turns out, all these years later, I’ve still never read a single article confirming that I wouldn’t have brain cancer if I’d just managed to lose 15 pounds. It’s bullshit, but it was fed to me repeatedly.

Sometimes the doctor’s admonition is what it is—fear of fat. Sometimes the extra weight is a result of disability and immobility. Sometimes food is the only scrap of comfort available precisely because no one will listen.

Me, bloated and fat from the dexamethasone, on the last day of radiation for my brain tumor. I am surrounded by my family.

The why doesn’t change this truth:

A failure to see any other possibility or acknowledge an inability to diagnose your condition in spite of an “unideal” weight is a red flag. No one knows everything, and any doctor who can’t accept their imperfection is doing patients a huge disservice.

3. A Bad Doctor Makes You Feel Rushed

The worst doctors I’ve had made me feel like they had somewhere else—maybe even somewhere better—to be. 

It hasn’t happened to me a lot, mostly because I’ve been waiting so long in uncomfortable chairs that I’m the one who wants out of there, fast. But when it happens, it’s not subtle. It distracts me from outlining my numerous symptoms, which I have a hard time recounting due to health-related anxieties.

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4. A Bad Doctor Doesn’t Ask Clarifying Questions

While I’m relaying my symptoms, I expect my doctor to ask clarifying questions. If I could diagnose myself and knew exactly what was important to share, I would probably just ask for the right tests from the start and save myself a lot of money and a lot of heartache, right?

If I say something like “this hurts” and my doctor wants to know the whens and hows of the pain, I feel much more confident that vital information is being considered. And who doesn’t want a shorter trip to diagnosis because all the facts are being considered, not just the easy ones?

Me and my husband, Dan, celebrating his birthday in Milwaukee, Wisconsin.

5.  A Bad Doctor Takes It Personally When Medications and Treatments Fail

I write a lot about The Rheumatologist from Hell™, but it’s because he so effortlessly did so much emotional damage that I have to work to undo all these years later. Present me wants to scream, “This isn’t about you! Don’t bill me for this crap!”

When Cymbalta (duloxetine) didn’t make me feel better, my old rheumatologist didn’t pivot or refer me to someone he thought might be able to help, he doubled down. He told me I’d hurt more if I didn’t take what he prescribed, and essentially blamed me for non-compliance before I was non-compliant.

6. A Bad Doctor isn’t Personable

Sometimes doctors are emotionally cold and you leave feeling less than human. These are bad doctors, no question about it. 

There is a certain level of detachment that’s completely appropriate, but if you walk away feeling less than or othered, it’s not you. More than anything I want you to know it’s not you.

7. A Bad Doctor has Bad Patient Reviews

A single bad review isn’t necessarily a reason not to see a doctor. We all know a lot of complicated factors determine which offices we end up visiting.

Doctors and patients can have bad days, and patients might be more likely to leave complaints on review sites when that happens.

But if you find a lot of reviews addressing the same problems repeatedly, that’s a sign you’ve got a bad doctor. When I feel like I don’t have a choice but to see a physician with a lot of negative feedback, at least I know what I’m walking into. There’s some solace in that.

Reporting a bad doctor for me is a moral imperative. But it’s equally important to share my good experiences too. It takes me only a few minutes to let other patients know what they can expect.

Pro Tip: for reviews, search for your provider on websites like Healthgrades and Vitals.

Share You Experiences with Bad Doctors in the Comments

Those are my own personal 7 signs of a bad doctor. I’ve probably missed some helpful stuff though. Let us all know what warnings you would add to the list by leaving a comment, and read about my fantastic new primary doctor.

PS: if you’re stuck with a bad doctor and trying to make the best of a bad situation, maybe this article will help: How to Get Your Doctor to Listen

PPS: If you need help relaxing because your doctor is lousy, try making weed butter or learning how to Zentangle! (Wink, wink.)

Enough

Enough

When I was rolling around “enough” in my mind, the word association thing happened. And I remembered that Jennifer Lopez movie of the same title that my ex-husband didn’t like much. It made him visibly nervous.

Y’all. I’m a pacifist. It’s not funny that violence made “Rodney” uneasy. It’s funny he thought me capable of it. It’s sad he thought I thought he deserved it.

Full disclosure, I did once tell him while he was cheating that I wanted to push him down the stairs. But that threat was more real in his mind than mine. And when I realized he was clearly taking it all more seriously than intended, it seemed like a good time for me to choose my words more carefully.

Anyway, what I’m really here to say is that yesterday I looked at the screenshot of my hospital receipt several times, and I realized almost immediately that having enough money to pay medical bills is more than a relief; it’s empowering.

Part of my struggle with brain cancer isn’t the cancer at all. It’s this bullshit insurance system we have in the States. There’s a part of a person that absorbs the natural consequence of for-profit healthcare: people who don’t have enough money feel unworthy.

Forget fighting insurance companies for a minute. We fight ourselves because of the messages we internalize from BlueCross and Aetna and Humana.

What do you mean some of us can’t have life-affirming treatment because it doesn’t make some rich person richer? Sure, we can formally appeal the premise, but we have to do so inadequately treated. 

Man, that is so fucked up. 

Like J Lo, I think I’ve had enough. So as an act of resistance, I hope you have enough of whatever it is you need.

For Peace

For Peace

If you haven’t heard of Aaron Bushnell by now, please know that even the blurred video is disturbing. Google with caution.

I’m having a hard time reconciling US political rhetoric about the preciousness of life with the willingness of some to dismiss what’s happening in Gaza. 

And by “hard time,” I mean I can’t contort my brain—which is exceptionally good at rationalizing when it wants to be—into imagining a scenario where a single, non-fascist human being can hold both thoughts at the same time without necessarily imploding.

Yeah, I witness cognitive dissonance all the time. But living in a world where a group of overlapping people can condone the genocide of a people’s children while also giving preference to embryos, calling some children filth, and trying desperately to deny other kids food?

What strikes me about Airman Aaron Bushnell is the singular sense of purpose he had, a desire for the peace and freedom of the people he saw being oppressed.

But even NPR reported yesterday a bizarre recounting of the haunting news, suggesting they couldn’t be sure what Bushnell was on about, exactly.

NPR reported Sunday: “The Israeli embassy in DC said none of its staff were injured.”  And “The Metropolitan Police department has since declared [Bushnell’s] vehicle of any suspicious activity.”

The article has been updated since I first read it, but I still don’t understand what they’re hedging for without putting on some very cynically filtered shades. They added, “As of Monday morning, NPR was not able to independently verify the man’s motives.”

What?

There are Bushnell’s statements, social media posts. Graphic video that he streamed to Twitch.

Particularly harrowing and authenticating is how a cop pointed a gun at Bushnell while an EMT yelled that he needed more fire extinguishers, not guns.

The entirety of the internet knew exactly what happened within minutes.

I don’t have well composed thoughts about self-immolation as a form of protest and frankly my mind might not even be capable. But a Facebook post I saw attributed to the airman reiterates a common refrain:

“Many of us like to ask ourselves, ‘What would I do if I was alive during slavery? Or the Jim Crow South? Or apartheid? What would I do if my country was committing genocide?’ The answer is, you’re doing it. Right now.”

I am sorry Aaron Bushnell won’t get to see the peace he sacrificed himself for.

Kiss My Astrocytoma

Kiss My Astrocytoma

I had a phone visit with my palliative care PRN this morning. Long story short I’m going to take a short course of prednisone during CZT training to make sure I can do the thing. Because it’s only a week’s worth of generic ‘roids at a low dose, my Rx only costs about $4.

Which brings me to the whole “Medicare can negotiate drug prices” part of the Inflation Reduction Act. I’ve read in a few places that it will benefit seniors specifically, but I’m not sure if disabled people on Medicare are just casually being erased from the headlines again, or if I’m still extra screwed. I’m trying to find an answer.

This is just one reason why I’m still engaged politically when I should be “focusing on getting better.” My shingles vaccines, which I’ve mentioned before, cost $200 EACH, for example, and I’m not allowed to make enough money for our household to survive or they’ll cut my disability income completely and we’ll have even less than not enough.

Maybe if the “safety net” wasn’t an all or nothing proposition?

Bottom line, if anyone out there wants me to shut up about it already (and, yes, people do sometimes say it out loud) they can kiss my astrocytoma.

I’m relieved it’s only $4 for this prescription. The antibiotic ointment my oncologist prescribed a couple of weeks ago cost $35. Not exactly in the budget, and I prefer to put my creativity into Zentangling—not wondering how to afford medicine.

I know these posts aren’t fun for people to read. They are much less fun to write. But no one is going to do it for me. This is as boot-strappy as it gets for the girl who grew up in the most polluted county in Indiana. (In case someone tries to blame my cellphone usage for my brain cancer again instead of spending equal time wondering if our environmental regulations are too lax.)

I know, I know. Blaming me is so much easier.

Whatsoever a Country Soweth

Whatsoever a Country Soweth

“For whatsoever a country soweth, that shall it also reap.” —Emily Suess, paraphrasing Galations 6:7 and lifting it out of context to make a rhetorical point

Last night someone on CounterSocial said we should do our best to write about the FBI raid of Mar-a-Lago without being sardonic or sarcastic so that posterity might know how people felt about current events long after said events are no longer current.

Damn that’s a really big ask—to edit the snark I mean—but I do think there’s value in the exercise. So here goes nothing.

I was in bed watching some art videos on gesture and composition when Dan came into the room to tell me that the FBI executed a warrant and Trump was shitting proverbial bricks while crying about his safe.

Members of the GOP judiciary were wondering what the world had come to if warrants could be issued to search the homes of old, white men.

And Marjorie Taylor Green was confessing nothing would get her to stop calling the people sporting antisemitic sweatshirts and literally killing people and smearing poop on the walls of the Capitol on January 6th—all in the hopes of installing the literal loser of an election—Antifa.

“Really?” I cackled, somewhat inappropriately. “That’s awesome.”

A while later, my sister-in-law texted to see if we’d heard the news. We had a good laugh at Trump’s expense, and then I wondered aloud what kind of dirt Trump had on people for them to still be defending and financially supporting a man who, as one internet stranger so eloquently put it, “commits a felony as frequently as he takes a shit.”

These sentiments might seem to be steeped in overt, politically motivated schadenfreude. Especially when taken in light of my conservative contemporaries’ proclivity for projection. But I assure anyone reading this long after I’m dead that I only see Democrats as beacons when compared to the moral debauchery of the Trump Crime Syndicate, more colloquially known as the modern GOP.

If you need to juxtapose me with my historical context for clearer understanding, dear scholars of the future, know I loathe the two-party system. Know I loathe the Electoral College. Know I loathe the false binary of everything, but especially political discourse. But also know I do not loathe Democrats and Republicans equally.

Republicans wanted Trump after all.

Yes, someone is always eager to point to Liz Cheney or Adam Kinzinger and say to me “not all Republicans.” To which I say:

Trump was known to be the most corrupt, inept, and outwardly racist and misogynistic choice from a field of at least 10 candidates. He was chosen by Republicans to be the presidential nominee—the figurehead of the party and what it stood for—because of his ability to exploit anger and fear, not in spite of it.

Someone out there might be able to appreciate a soggy square of moralistic toilet paper among a bowl full of pearl-clutching turds, but it ain’t me, babe.

I don’t know if that qualifies as snark, but it’s not meant to be. I want future scholars of American history to understand how abhorrent I find political conservatism. In 100 years I want them to smell the inhumanity of the dumpster fire that stacked the courts, rolled back voting rights, and told us the only way to stop mass shootings was to make sure angry, radicalized assassins had an easy time procuring multi-round guns and plenty of ammunition.

For me, each glimpse of Trump’s legacy burning is satisfying on multiple levels. It’s not just watching an arrogant asshole get what’s coming to him. It’s also witnessing a depraved, wholly self-interested political party scatter when the lights are turned on.

Our glee is a confession. An inappropriate but entirely natural response. A way of acknowledging the truth that fascism didn’t tighten its grip on this democracy because we accidentally let The Bad Guy’s wife redesign the Rose Garden, but because too many people planted hate and fear instead of carefully tending social justice.

For whatsoever a country soweth, that shall it also reap.

For the Record

This is a living document which may (likely will) be supplemented as necessary. If you have received this link in response to a comment, it’s because I’m tired. Cancer fatigue necessitates I create more efficient methods of communication. Items are numbered to make referencing points easier, not necessarily by priority.

This document was not directed at anyone specifically or in response to any specific remark at the time I wrote it. I just found myself repeating a lot of things over and over to people and thought this would save me some time and heartache as I try to take care of myself.

It is not uncommon for me to be assumed rude, disrespectful, mentally unwell, or just a “bitch” for being unwilling to listen to “reason” when I bluntly disengage from “debates” with others. Mostly because people who don’t routinely set their own boundaries don’t recognize mine. Some of these boundaries have been set for ages. Others are relatively new, borne of necessity because of my presence on social media.

Comments are turned off. If you don’t understand why, I probably can’t explain it to you. So I won’t bother.

–Emily
1/9/2021


  1. Censorship by private companies is not comparable to censorship by the government.
  2. You cannot reasonably argue that your Aunt Betty shouldn’t have to sell a wedding cake to a gay couple but Simon and Schuster should have to publish a nazi’s book or TLC should have to keep Duck Dynasty on the air.
  3. If a sitting senator, such as Josh Hawley of Missouri, forced a book publisher to distribute ANY kind of writing, the United States would be guilty of the very things we have long accused countries like China, Russia, and North Korea of doing.
  4. The First Amendment protects citizens from retribution by the government for criticism of the government. It does not protect you or me from being grounded by our parents for saying fuck or guarantee you your own talk show.
  5. Also, SCOTUS has ruled there are limits to your right to free speech. If you cannot at a minimum explain to me in your own words the crux of Oliver Wendell Holmes’s SCOTUS opinion about shouting “fire!” in a crowded theater, I will not further entertain your First Amendment grievances on behalf of criminals.

  1. To deny the existence of white privilege is to further the cause of white supremacy. A person does not have to write or speak racist slurs, be a member of the Klan or the Proud Boys, or make people drink at separate water fountains to be a racist.
  2. A person does not have to be aware of their racism to be a racist in the same way that a person does not have to know that fishing without a license is against the law to break that law. Ignorance can be considered a cause of racism, but not an excuse for it.
  3. The United States is a racist nation for many reasons. Chief among them are the discrepancies in how Black and brown bodies are policed, denied equal justice under the law (bail, sentencing, use of solitary, juvenile jail, etc), disenfranchised, and systematically excluded from rights to life, liberty, and happiness.
  4. If you cannot at a minimum define the words sharecropping and redlining, I will not subject myself to your whining about “special rights” let alone your opposition to reparations for Black and indigenous people.

  1. The Confederate flag is the flag of white supremacy. The Civil War was fought because of slavery. It was only about “states’ rights” in that some states claimed that slaveholding was their Christian duty. If you cannot at a minimum, tell me from where the following quote originates, I will assume you want to defend the defenseless position of white supremacy and end the conversation.

    The quote: “Our position is thoroughly identified with the institution of slavery—the greatest material interest of the world.”
  1. “Heritage not hate” is a shibboleth for our racist contemporaries. It is not a catchphrase used by people who are just really into confederate history.

  1. Donald Trump is a white supremacist; white supremacism is terrorism. Therefore, people who support Donald Trump support white supremacist terrorism.
  2. Nothing you can argue will dissuade me from acknowledging this reality or excuse you for it. If I know you to be a Trump supporter, I will treat you as I would any white supremacist. To be welcome in my sphere, you must cease being a white supremacist. There is no workaround.

    We can disagree on many other political, religious, social, and philosophical things and still maintain a friendship or a loving familial relationship, but not this.

  1. I am not responsible for the version of me you have created in your mind, and it is not my responsibility to protect your delusion.

  1. I am not hiding who I am from you in order to deceive. If you are shocked to learn that I swear, speak my mind, publicly name doctors who have harmed me, bluntly respond to unwelcome comments on the internet, etc—it’s probably because you were assuming facts about me not in evidence.

  1. Insisting that I be positive about or simply “get over” any of my trauma is not welcome at anytime. If you minimize my trauma during a particularly stressful time, you should expect to hear what I think about your actions.

  1. I witnessed via real-time video a violent, deadly coup attempt—carried out by the President of the United States, members of the Republican party, members of law enforcement and white supremacist militias—in which people died.

    For four years I was treated by many as an alarmist for noting how Trump’s presidency would and did parallel the historical rise of fascism around the world. I was told that there was no difference between Hillary and Trump. I was told there was no difference between any Democrats or Trump.

    I was gaslit repeatedly about Trump and many other things. I have been traumatized by the constant gaslighting. In addition to those traumas I have spent four years wondering if I’d be denied healthcare, lose my house, die of cancer, continue to watch my Black, brown, immigrant, native, and Jewish friends and fellow humans endure hate crime after hate crime, all while my federal government let us die of and encouraged others to promote the spread of a deadly virus. I am not OK, and I will not likely be for a long time. I will not apologize for not being OK or attempt to make anyone else more comfortable with how not OK I am.
  1. My post-traumatic stress episodes bypass the parts of my brain concerned with your feelings and all processing resources are directed to protecting and deflecting harm. IMPORTANT: You do not have a say in what words and actions my brain deems harmful. Your good intentions cannot be factored into the equation until the episode ends, at the absolute earliest. Pressing for immediate reconciliation by insisting you didn’t “mean it like that” will make things worse 100% of the time.
12 Long-Term Disability Appeal Tips

12 Long-Term Disability Appeal Tips

I’m not a disability lawyer, and I’m not giving legal advice. I’m just a woman with brain cancer who’s got battle scars from fighting an LTD insurance company and some disability appeal tips.

I created this list of tips for disability insurance recipients by asking what I wish I’d known from the beginning.

Because, from what I’ve learned, cancellation is inevitable.

Don’t talk over the phone.

There are a couple of reasons I suggest this. First, it’s stressful to be put on the spot during an unscheduled phone call when your livelihood is at stake. Avoid phone conversations just for your own peace of mind.

Second, the call is likely to be summarized by the disability insurance claim specialist you talk to rather than transcribed verbatim. That leaves a lot of room for someone to “accidentally” leave out important information or conveniently interpret information in a way that can be used to weasel out of paying your claim.

(Ask me how I know.)

So how do you get your insurer to stop making periodic “check-in” calls and email or write you instead? Just tell them to. I emailed the claims specialist handling my case the following message after she tried to get me to switch back to phone communication:

I will not be speaking with any Lincoln Financial Group representative by phone at this time. All answers can be provided in writing via email and/or hardcopy on company letterhead.

February, 2020

Naturally, she wanted to respond to questions I had over the phone, presumably so there wouldn’t be a written record of her answers. Fortunately, I saw the maneuver for what it was and refused phone calls from that point forward, but I wish now that I would have set this boundary from day one.

Know disability policy terms.

Although I had the foresight to buy a long-term disability insurance policy, I didn’t seriously consider what I’d do if I needed it. So I never read the entire policy while I was still healthy.

(Honestly, I don’t even recall if my employer provided full-text of the policy when I signed up during new-hire orientation. I probably would have had to specifically request it.)

No shame if you haven’t read it closely yet either. Life’s short. But do read it now. If you’re not able, have your spouse or someone else close to you give you the Cliff’s Notes so you’ll know what your responsibilities are when it’s time to file the disability insurance appeal.

For instance, with Lincoln Financial Group policies, you’ll probably be required to complete two administrative appeals before you can sue them.

Yes, it’s as ridiculous as it sounds. My disability insurance company, Lincoln Financial, itself decided two more times if they were wrong about me.

Request your file.

My long-term disability (LTD) policy stipulated that my case would be up for re-evaluation after two years. At that time, I’d have to show that I couldn’t perform ANY occupation in order to continue receiving benefits instead of just my OWN occupation at the time I became disabled.

I wish I’d thought to ask for my file before Lincoln Financial Group started their review process.

By the time they cancelled my long-term disability insurance benefits, the file Lincoln Financial Group had on me was more than 700 pages long.

Trying to pin down errors and omissions in that clunker was a nightmare—all complicated by the stress of not knowing how I was going to pay the mortgage.

POV: Waiting at the doctor’s office. Still disabled.

The file your disability insurance carrier keeps is an unwieldy thing that can easily reach thousands of pages in a couple years’ time. (Not everything is relevant. They want it to be confusing.)

If you can identify even a couple of omissions in your record before you’re in financial crisis, you’ll be several steps ahead of where I was when the clock started ticking on my appeal.

In my case, Lincoln Financial Group didn’t even mail my file the first time I requested it. I had to email a claims specialist several times and finally demand she overnight the file and prove she did it by giving me a tracking number. By that time, almost two weeks had passed.

Important note: By law, we policyholders have a deadline for filing our appeal(s). This should go without saying, but always know what your deadlines are and ALWAYS submit on time! By not mailing my file, LFG was eating into my deadline, likely hoping they’d get me to miss it completely.

Review your file.

Once you get the file, dig in. Inaccuracies weren’t frequent, but there were some. The big thing was learning how much my oncologist’s office had left out.

Because I signed a medical records release, LFG requested documents directly from my doctor. And the doctor’s office sent them directly to LFG without my having a chance to give them a once over.

And that’s exactly want your insurer wants to happen. You can insist your doctor’s office provide you copies of the info they send, but you can’t count on them to follow through.

The incomplete records your doctor keeps will help the insurance company paint a picture that works to their advantage. I imagine there are a lot of cases where a patient’s disabilities are not noted in medical records.

A personal example: I suffer from disabling vertigo and am at a high risk of falling. I can’t walk more than a couple of steps without using a mobility device or grabbing something to stabilize me. I also suffer from extreme cancer-related fatigue and can’t walk or stand for extended periods.

But my doctor and the NP never documented this. They never even ask if I could. In fact, the doctor never saw me walk. He only ever saw me seated in an exam room chair.

There was so much information missing from my medical records that the forms he sent to the insurance company made it look like my tumor hardly affected me.

My primary physician’s records were significantly more thorough, so naturally the doctors hired to conduct a review of my case avoided talking to her and downplayed their relevance. The insurance company either didn’t request records from her as frequently or they didn’t include them in my file.

Request documentation from your doctors.

The remedy to the previously mentioned problem was for me to spell it all out for my physicians. And, I’ll be blunt, my oncologist was pretty good at treating cancer and reading lab results, but he was horrible when it came to the softer science of cancer treatment—identifying and documenting his patient’s needs. I’m not saying he’s entirely to blame for that; it’s just a fact.

When you find a physician can’t be bothered to do a thorough job, stop wasting your time on them. Focus on making it as easy as possible for the good ones to document your case.

The more thorough your file before disability appeal starts, the better. When you get an updated file, check to verify the supporting documents you and your doctors send are being added.

Selfie of a woman in a car with a dog behind her in the back seat
Me with my emotional support doggo, Boomer.

Hire an attorney.

The appeals process is essentially legalized torture. If you can find an attorney to mange your claim for a percentage of your benefit check AND you can afford it, it’s probably worth having one on retainer immediately.

Why? Because when the insurance company hires doctors halfway across the country to “independently review” your file and gaslight you, dealing with that additional stress while not having money will wreck your mental health. Trust me.

If you have an attorney intercepting all communication, you can keep the stress to a minimum. And, who knows, maybe even prevent cancellation in the first place.

Research the appeals process.

This tip is most relevant for people who are going to manage an appeal on their own, without any legal representation or guidance, like I did for my first administrative appeal.

The point is to learn as much as you can about how an administrative appeal works BEFORE the clock starts ticking. Forty-five days to write and submit your appeal might seem like plenty of time, but I promise you it’s not.

Not only will you be trying to gather documents, requesting supplemental records from your doctors, and making requests for information from a hostile insurance company, you will also still be living with whatever sickness or injury disabled you in the first place and the inherent barriers and obstacles associated with it.

Create a hard copy file.

Save everything, not just the stuff your LTD insurer sends you. You are likely going to need your most recent year’s taxes, your initial award letter and your amount of benefit letter from SSDI (if applicable) in addition to all the strictly medical stuff.

If your doctor filled out the form for you to get an accessible parking placard, keep that too. You get the idea.

These things will be asked for frequently as part of your appeal, but also? If you need to apply for food assistance or other financial support while your claim is going unpaid, you’ll have everything handy already.

If you have access to a scanner, scan your hard copies. Scan the envelope the documents came in (for a record of the postmark) and the documents themselves in the same file.

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Save files as a PDF and choose a detailed file name like “Lincoln Financial Group Notice of Cancellation 20JAN2019,” and consider it a gift to your future self.

Mark the date you receive documents.

If your disability insurance company is diabolical enough (ha ha—“if”), they will intentionally delay getting vital information to you, as Lincoln Financial Group did to me on several occasions.

Every physical letter they ever sent was dated about 5-7 days earlier than it was postmarked and 7-10 days earlier than I actually received it. They were either backdating correspondence or holding it before putting it in the mail.

If you should need to prove bad faith on the part of your disability insurance company, having this information will come in handy. Of course, if you’ve already scanned the postmarked envelope, you should be covered.

But in my house at least, empty envelopes have a way of getting separated from the documents they once contained. Writing the date received on the document itself just gives you a little extra insurance. Pardon the pun.

Create an electronic folder.

Again, being organized now will save you time and heartache later. If the documents you download from your web browser save to one folder and the documents you scan save to another folder, and the documents you view on mobile save to an entirely different device, finding what you need when you need it won’t be easy.

Create one central folder where everything goes, and create descriptive subfolders if (okay, when) things start to get unwieldy.

BONUS TIP: Apply labels or use folders in your email application to easily find messages again later. Gmail, for example, will automatically apply labels to messages received from specific email addresses.  

Create a digital back-up.

You know the drill. Make a backup of your files regularly and save them to Dropbox or Google Drive or whatever cloud storage account you have and/or save them to an external thumb or hard drive.

Devices fail, and you don’t want to risk losing all your documentation to a computer that dies on you at the worst possible moment. Even if you can recover the data on your device, you don’t want to lose precious time while the appeals clock is ticking.

Expect doctors you have never met to lie.

Even though I’ve had some harrowing experiences with doctors in years leading to my diagnosis, I still was not emotionally prepared for Lincoln Financial Group hiring “experts” to lie about my condition.

Title image for post "My New Primary Doctor" featuring faceless doctor holding a medical chart.

Doctors who take on this kind of work have cranked up their clinical detachment to 11—to the point they are no longer helpfully objective but harmfully biased.

They don’t think of you as a person when they’re writing up these opinions for the insurance overlords. At best they see you as an interesting set of diagnoses and vital statistics.

The impartial truth is secondary to their bank account balance and ability to land similar contract work in the future. Don’t let the bastards get you. Hell, if you’ve got the fight in you, name them.

That’s all I’ve got for now. Just remember that the overarching theme here is to anticipate filing an appeal. Unwarranted cancellations are the rule, not the exception. Your disability insurance company will always try to get out of making payments. Follow these disability appeal tips and be prepared.

How to Get Your Doctor to Listen

How to Get Your Doctor to Listen

As a patient with chronic pain who was undiagnosed and then misdiagnosed (they told me I had fibromyalgia but it was a brain tumor) for years, I learned a thing or two about how to get your doctor to listen to you.

Going through life with a misdiagnosis—or no diagnosis at all—is as hard to bear as whatever’s ailing you. Not everyone is born a self-advocate. It’s something we must learn and practice.

So here’s what I’ve learned. I sincerely hope it can help you too.

Why Your Doctor Isn’t Helping

It may be that your doctor, though well-intentioned, isn’t picking up on what you’re telling her. Or maybe you’re not communicating as clearly as is needed. Or, you know, maybe your doctor is just an asshole. (I’m telling you some of them are.) For me, it was a little bit of everything.

First, let me assure you that if you are currently facing this struggle, there’s a good chance it’s not your fault. There’s also a good chance you’re a woman. Doctors not listening to female patients is a thing, and the problem of sexism in health care is long-running and systemic.

According to Prevention, for example, women are 50% more likely than men to get a wrong diagnosis after experiencing a heart attack, and hysteria wasn’t removed from the DSM until 1980.

Nineteen-freaking-eighty!

But as the world can attest, cutting ridiculous junk from a manual doesn’t automagically remove stigma and prejudice from a profession or a populace. From psychology to surgery, health care is still plagued by crap assumptions that undermine the care of women.

And it’s not just the old white guys who are guilty of perpetuating harm—women doctors do it to women patients, families and friends do it to people they love.

We. Do. It. To. Ourselves.

My Chronic Illness Misdiagnosis

For me, the trouble started because I was a woman in my thirties presenting with chronic pain. It was generalized, meaning I hurt everywhere not just my elbow or my neck. And because the pain prevented me from being active, I was also gaining weight.

Before a single drop of blood was taken, a nurse practitioner told me I probably had fibromyalgia. I was tested for arthritis and a handful of autoimmune issues straight away, then referred to a rheumatologist the following week.

When the blood test results were wholly unremarkable, the rheumatologist presumed me to just be a pudgy, complaining woman in need of antidepressants.

Unsurprisingly, he officially diagnosed me with fibro, a condition with a unique and horrifying stigma all its own. And when his (mis)treatment plan failed to help me, he put the blame squarely on my shoulders. His demeanor toward me turned hostile, he communicated with me like I was an ignorant, troublemaking child, and he was outright belligerent when I asked him questions.

How dare a uterus-having technical writer ask if maybe Cymbalta wasn’t The Answer.

That’s when I knew without a doubt my rheumatologist was a lazy stinking misogynist, which brings me to my first bit of advice.

Tip 1: Fire All the Assholes

Yes, I know what I’m saying is very difficult to do in a lot of cases. Restrictive insurance networks, a limited number of doctors and specialists in your area, and sheer exhaustion from your chronic illness can make finding a new doctor all but impossible. But your health is the thing, and you can’t protect it if you keep leaving it in the hands of an asshole.

Cry because it’s hard and unfair. Absolutely do that. But then remember that you don’t have to solve the problem in one day. Promise yourself to look for a better option and jump at the opportunity when you find it.

Tip 2: Expect Struggles with Good Doctors Too

Not all my doctors were so lazy and horrible, but by the time I was ready to give another doctor a try, Dr. Asshole had already done his worst. The wrong diagnosis stuck to me like toilet paper to a shoe.

He was given the benefit of the doubt at every subsequent doctor appointment I had for the following two and half YEARS, and at least a dozen more MDs and PAs and NPs tried their best to persuade me I really did have fibromyalgia after his misdiagnosis.

It’s maddening if you think about it too long, but medical professionals—even fired ones—are always presumed to know more about being sick than the people who are sick. You’ll need to mentally prepare yourself for this reality before every appointment.

Tip 3: Take a Break

Meanwhile, I continued experiencing symptoms that didn’t really fit with fibro. The unexplained haunted me, and I got sicker. I surfed WebMD and Dr. Google and tried to diagnosis myself. When I asked doctors about the things I’d learned, it didn’t go well. If I wasn’t ridiculed on the exam table, I was politely ignored.

There were days when I felt like I just couldn’t do it anymore, so I didn’t. I took time off from going to appointments and even scheduling appointments until I recovered enough strength to deal with more heartache from doctors—people I was taught to trust with my life. I told myself I’d go again when I had the energy to communicate without bursting into tears.

And, yes, I did break down a few times. It’s inevitable, dear human. Don’t beat yourself up about it like I did.

Tip 4: Ask To Rule Out Diagnoses

I had infinitely more productive appointments when I stopped asking “Could it be X?” and started asking “Can we rule out X?” I don’t see why such a subtle change should matter so much, but it did.

Doctors were less likely to see me as a difficult, self-diagnoser and more likely to see me as a diagnostic partner when I asked if we could rule something out instead of confirm it. In fact, no one bothered to order a single MRI until I asked, “Can we rule out MS?”

Folks, that first MRI is how they found my brain tumor. Or, as I see it, how *I* found my brain tumor.

Tip 5: Recognize Internalized Bullshit

We can be our own worst enemy when we take in and internalize bad messages from external sources. Sexist and ableist ideals can ooze out of us without our realizing it. We can be gaslit by medical pros without seeing the harm because we’re taught to treat them as authority figures or saviors instead of trained diagnosticians paid to do a job.

Mull it over for a bit and see if you’ve fallen into traps that affect your ability to self-advocate.

  • Do you hear yourself as a reporter of facts or a complainer when you tell a doctor your symptoms?
  • Do you think all your problems would go away if you could just lose the weight?
  • Do you always think you’re sick because you’re depressed and not depressed because you’re sick?

That asshole rheumatologist I mentioned before? He’d only ever seen me fat and just assumed I was lazy and overeating. He had no idea that less than a year before I was running 5Ks on the treadmill or completing a Jillian Michaels’s Shred workout in my basement five times a week.

Still, I had to fight like hell not to let him gaslight me. He nearly had me convinced I was fat and lazy and my pain was imagined.

Tip 6: Take Someone with You

I’m as independent as the day is long, and I’ll tell you I hated bringing my husband to appointments with me at first. Not because I minded him being there, but because IT SHOULDN’T FUCKING BE NECESSARY. (Ahem, sorry. This will always be a sensitive subject for me.)

However, when I couldn’t put my own underwear on or get myself out of the bathtub anymore, I relented and asked him to join me at my next appointment. Being stubborn about it might’ve killed me, looking back on it. Anyway, having a man in the room changed the way all my doctors behaved. Some definitely more than others.

Turns out it would later become absolutely essential for Dan to attend my appointments. The point is that I probably should have asked sooner than I did, given how the world works.

Tip 7: Connect with Other Patients

I know there are patients out there with different perspectives who have learned things I haven’t. I encourage you to seek them out. There’s an entire community of doctors and patients online who are constantly sharing what they know. Seek them out.

And if all else fails—and sometimes it does—try weed.

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