Why is a cat the featured image on a post titled “It’s not a tumor”? Because I do what I want. Say hi to Oliver.
I’m here to write my obligatory “it’s been a while” post. Not wanting to bury the lede, I’ll let you know I’m still here. Just miserably so.
I’ve had a LOT of doctor appointments the last few months trying to figure out why one of my jaw lymph nodes is inflamed to 3.5 cm.
It started maybe two years ago. There were antibiotics, a biopsy, more antibiotics. Nothing helped long term, and nothing was diagnosably wrong.
Over time I have become fatigued to the point I have to calculate if I can do a thing and still get myself to the toilet in time. (Sometimes I can’t.) I spend most of my time in bed.
My pain is off the charts too. Weed is my one respite, but I only take it before bed because it tends to dehydrate me–even with all the Gatorade and Liquid IV and DripDrop SSDI can buy.
Anyway, with the first biopsy saying it wasn’t more cancer, my oncologist referred me to an ENT who suggested removing it surgically was an option, but I had time to think about it. If it was still bothering me in the Fall, I would call to schedule the procedure.
Well, Fall arrived and I was so fatigued and the pain was worse and I went from reluctant to be cut open again to “get this fucking thing out of me” overnight.
But, naturally, the worsening of symptoms concerned people who know more about such things. I’ve had a CT, a PET scan, and a biopsy in the last month or so. It’s no longer a single lymph node. There was some mention of lymphoma, but it’s not that.
Of course, I got that information long after the anxiety had taken over. Last night the oncologist’s office called after hours and I spiraled again. It was just an appointment reminder for January 2nd. My mind was reasonable, but my gut was not.
It’s my opinion that I have some kind of infection or a bunch of reactive lymph nodes, but I guess I’ll see what the doctor says after the first of the year. Doctor Google didn’t have anything conclusive to say about the lab and biopsy results, which is why I’m “like this.” Some deep, dark part of me remembers what happens to the undiagnosed.
The good news is I got a stair lift out of the deal. Lol. It really has helped me so much, now that I have to leave for medical appointments all the damned time.
I’ve also been listening repeatedly to Tara Brach‘s podcasts, especially the episode titled “Awakening from Trance – Embracing Unlived Life.” It hits home enough that listening is a good distraction and it has given me tools to cope when I can’t listen. I’m not without anxiety, but my more intense episodes don’t last as long as they used to. I’ll take it.
I’m going to leave off with an ask that you visit my YouTube channel and share a video with someone. (I’ve got bills, they’re multiplyin’.) I’ve also got an updated Amazon wishlist. Know that things are not dire now. I’m just financially anxious about what’s ahead.
I hope you have a celebratory December, what’s left of it now, and a wonderful New Year.
I hesitate to say today was OK, because what counts as OK for me requires a lot of expectation management on the part of everyone else. But you know what? That’s not my problem. I don’t know why I continue to feel like I need to be understood by people. It’s definitely a fault of mine, because even the people I interact with IRL daily don’t—can’t—know what it’s like to be me.
So I’m letting that shit go. Think whatever you want about me living my life with brain cancer; it’s not my job to make sure your estimation of my disability is accurate. That’s a habit I picked up from back in the day when Lincoln Financial Group was pretending I was in remission. And fuck them all the way to Jupiter. Gaslighting motherfuckers.
I’m not mad right now. I just really don’t like people who are willing to work for them.
Today was OK for me because I feel somewhat accomplished. First thing this morning, Dan and I had our labs done together. And both of us had to remember to fast, so that’s kind of a big deal. Also? One stick! Welcome back from the brink of chemo hell, junky veins!
For lunch, I made some pizza rolls in the air fryer—ALL BY MYSELF. And then I took a shower.
Getting all of this done in a single day (and then blogging about it) is freaking huge. Huge!
Mom is helping me get some pictures of Dan and his family framed, so we went through some boxes of old photos. I might be slightly biased, but Dan was one of the cutest triangle-mouthed babies to ever exist. Here he is at 6 months with his twin brother.
There are more pictures to come, but not in this blog post. Happy Thursday, y’all.
Just popping in briefly to share some good news with you all. Though I shared already on Facebook and Twitter a couple of days ago, I just realized I forgot to make an announcement on my blog! I won my long-term disability appeal against Lincoln Financial Group!
My attorney called me last week to let me know that after a
full year without paying my benefit, Lincoln Financial Group finally reinstated
claim. Of course, with all that’s going on right now, that news was VERY
welcome.
Over the course of…well, however long it takes me, I will be endeavoring to post and compile resources for everyone else out there still fighting or about to fight an unjust cancellation of benefits. The best way I can think to help others is to share what I’ve learned. To keep telling my story.
In that vein, I have posted a couple of resources already—12
Tips for Long-Term Disability Insurance Recipients and Long-Term
Disability Appeal Timeline. But this is just the start. As you can probably
imagine, I have quite a bit to say on the matter.
In the meantime though, I hope you will reach out to me if you
have questions. DM me on Twitter, use my contact form, whatever.
I know I can’t realistically fix this system that was
designed to rip off of vulnerable people, but by empowering individuals,
perhaps I can help shorten the long arc of justice and make it bend a little
more sharply toward justice.
So, help me celebrate the fact I won my long-term disability appeal against Lincoln Financial Group by telling someone you know that sometimes the bad guys are actually forced to suck it. Sometimes the good guys win. If you know someone right now that could use a friend who’s been through it, point them in my direction. If you don’t know anyone fighting this batter, tuck my info away in the back of your mind for later. Because you never know when you or a friend or a family member might end up fighting a similar battle one day.
Wash your hands, stay home, and please don’t take medical advice from Trump. Even if I don’t like you, I don’t want you to die.
The legal assistant assigned to my disability case against Lincoln Financial Group called me at the end of last week. She said they just needed a couple of signatures from Dan and me and a copy of my SSDI award letter. Then they’d be ready to ship off the entire appeal. This month is the deadline.
She gave me a quick rundown of everything they are submitting with my file, and—whatever LFG decides on this second appeal—I feel better just knowing there are people out there to push back against the insurance company’s lies and the lies of the doctors, like Samuels and Hartner, who shill for them.
It’s also been really nice not getting any emails or phone calls from the claims specialists that work for LFG since I found legal representation. I don’t know how employees like Ann and Sherry can do what they do to people in my situation. HR at Lincoln Financial must offer certified empathy extraction benefits along with vision and dental.
One thing the disability attorney managed to nail down was a sworn statement from my neuro-oncologist at Barnes-Jewish. “It’s going to be submitted as additional documentation after the deadline,” the legal assistant explained. “But he’s been out of the country for a while, so our hands were kind of tied.”
I’m stunned. Absolutely stunned that they are getting this from Dr. A. He’s good at the cancer stuff, but kind of impossible to pin down. I’d say 95% of my interactions with his office, including treatment and follow-up visits, at the cancer center have been with his NP, his nurses, and his office coordinator. I know that’s normal, but it’s far from ideal—even when you’re not fighting insurance.
Anyway, I asked the legal assistant how much time Lincoln Financial had to reach a decision on the appeal. I couldn’t remember. The answer is 45 days from the date of submission, but with a caveat. Since the sworn statement from Dr. A will be arriving later, LFG may request more time to review the additional evidence and it could be up to 90 days before I hear anything.
“Lincoln isn’t bad for missing deadlines—some other companies we deal with are terrible—but we’ll file a formal ERISA complaint if we don’t hear from them by their deadline,” the legal assistant said.
Do I think LFG will take another 45 days just to review one statement from my doctor? Yes. Yes, I do. Every day they don’t pay a claimant is another day they can earn interest on the stockpiles of cash they make from hoarding money that is supposed to be disbursed to disabled policyholders but isn’t.
My dad, who has always been really good at money, doesn’t pay his bills too soon before the due date for this same reason. “It’s silly to pay the bill as soon as I get it when that money could be making me more money,” he says.
The huge difference of course being that Dad isn’t holding someone else’s money. If he were doing what LFG is doing, we’d all be calling it theft.
Something to keep in mind, because the process for appealing cancelled disability claims is so stinking confusing, is that the appeals process is not anything at all like an actual lawsuit. There’s no independent third party, like a judge, weighing the evidence yet.
Both of my appeals of LFG’s egregious decision (the first one I made on my own, and now this one with my attorney) are appeals to the company itself. It’s nothing more than me saying, “Hey, you guys are wrong. Here’s why. Change your mind or be sued.”
LFG’s employees use language to try and make us all think the appeals process is about reviewing facts and making the right call. They’re spraying Febreeze on a pile of bullshit, guys. Being disabled as defined by your policy isn’t enough to win a disability appeal. You also have to convince them it’ll cost them more in the long run not to pay you.
I knew this in my gut from the day LFG cancelled on me, but I was so blinded by rage in the early stages that it was hard for me to wrap my brain around it. With a little more mental clarity, I see the appeals process for what it really is. Me saying, “Hey, bitches. Look at all this stuff I’ll be taking to the judge when it’s time to sue. Sure will cost a lot of money for you to prepare your defense and then lose anyway.”
Knowing Lincoln Financial will be holding my money hostage for at least another three months, seems like a good time to plug my serial memoir, Who You Gonna Believe.
Last Saturday there was another writeup on my continuing saga with Lincoln Financial Group. This time the article was published on Relation State, a blog run by a good, progressive-leaning friend of mine who wanted to assist me in my mission to warn people away from LFG and its products. Today I remind you: don’t be like Bob.
In a goodwill effort to reach a larger crowd, my friend shared the post on the Relation State Facebook page. For the most part, people were sympathetic. But there’s always that one guy, isn’t there? This time, the guy’s name was Bob.
Bob, bless his heart, seems to think he’s immune to the havoc a billion-dollar company like Lincoln Financial can wreak. He commented, probably without knowing I was in the audience, that whatever the insurance company had done, the fault was with me. “I got what I paid for,” and “I should’ve read the fine print,” he said.
It’s almost cute how Bob believes Lincoln Financial discloses their misdeeds in writing at all, let alone before a customer pays her premiums.
But some people, and I think it’s safe to assume Bob is one of them, cling to an oversimplified, conservative notion of capital-P, capital-R Personal Responsibility. They prefer believing they’re better and smarter than the rest of us over acknowledging that shit can happen to them too. Lincoln Financial Group counts on people like Bob to keep their secrets safe.
Bob’s comments reveal the crux of his personal philosophy:
his fortune isn’t fortune at all—it’s superior intelligence. By his logic, I’m just
gullible or stupid or both, and that’s the real crime here.
Despite the insults we attract from people who don’t get it,
it’s important for me and people like me to keep telling our stories. Why? Because
when we talk in generalities, the information doesn’t stick. The world stays
complacent. Someone else gets brain cancer and instead of accessing the safety
net she paid for, an insurance company records an immorally large profit, profiteering
doctors like Brian
Samuels and Lee Hartner
line their wallets, and a disabled woman with a brain tumor forgoes medicine
and racks up additional debt just to keep the lights on.
We can throw a wrench in the works, slow—maybe even halt—the
conveyor belt carrying our money to liars and racketeers.
But not if we’re content to be like Bob. Don’t be like Bob.
I don’t have anything new to report for my October update, but I thought I should check in. I didn’t want you guys assuming the worst about my absence.
The Fight Against Lincoln Financial Group
The legal junk with Lincoln Financial Group continues. I have nothing new to report, just another reminder that they are awful and you should tell your family and friends to never do business with them. If your employer offers disability insurance benefits through Lincoln Financial Group, you might even want to mention why you won’t be taking those benefits and ask them to reconsider even offering such an insulting “benefit” to the people who give up 40 hours or more of their lives for The Man every week.
This Here Blog
I won’t be updating here much for a while. I don’t have the money to keep up my WordPress subscription, so it’ll revert to the free offering when my current subscription runs out next month. You might not even notice a difference if you stop by the site after that, but just in case you do—you’ll know why.
In an ideal world, I’d be able to scrape some money together and go back to a self-hosting situation—take back full control of things at emilysuess.com again—like back in the day. But as you know, this is not an ideal world. I’m not giving up on that dream altogether, though I have accepted that it won’t be happening real soon.
So, bottom line is: just expect me to post around here super infrequently until I get other parts of my life sorted and have some time and energy to weigh my website/blog options. I promise if anything major happens, I’ll slap something up and let you know.
The Twitters
Jesus, that site is a cesspool these days. I haven’t been on there much lately either, which is where I was sure I was going to land when I quit doing Facebook because Mark Zuckerburg is an unscrupulous taint on society. But I seem to be losing control over the content showing up in my feed there too, and Trump and the bots have just ruined what used to be a good, fun thing for me. So fuck Jack. I turned off my notifications.
I still make the occasional appearance there, but mostly to self-promote or watch the videos of baby goats jumping on beds that Dan drops in my DMs. I try my damnedest to avoid the depression that accompanies the 24/7 inanity of what Twitter presumes I want to see day in and day out. I tried to tweak my feed to my liking there for a while, but either I’m not as adept at those things as I once was or Twitter has just trashed The Damn Algorithms.
I will respond to your DMs and don’t mind getting them there, but if you need a response quickly it’s best just to text or email me. If you don’t have my number or my email address, ask—or use the contact form on this site. It goes straight to my gmail account.
Patreon and My Memoir
This is the one thing I am determined not to let slide. I promise to forge ahead with my serial memoir on Patreon once a month. (In fact, Chapter 8: Good Luck with That just dropped yesterday.)
It’s simultaneously the least and the most I can do right now. I’d like to be able to post new chapters maybe a couple times a month, but I can’t handle it. People who write memoirs about their life’s traumas are beating themselves up, and I—a depressed woman with no money and a brain tumor—am no exception. Reliving certain hells is even harder when you’re chronically sick.
But I need the money.
Don’t get me wrong, though. It’s not a 100% awful endeavor. I am rewarded by accomplishing things. Even if it’s only writing 1800 words a month. And I really get a boost when a patron comments or messages me that they relate to Who You Gonna Believe? in some way. I know it’s just small-time, but I hope to find a wider audience for it someday. And hopefully not posthumously!
Around the holidays or maybe for the new year, I’m pondering running a limited-time offer of some sort to get more people to join my little Patreon community. We’ll see.
Anywho, if you want to read the sordid details of how my first marriage fell apart right flipping now, you can do it for a buck. You can read the preface and all eight existing chapters in a day if you want, then unsubscribe when you’re done. You can come back eight chapters later and do the same thing if you want. In fact, I encourage it. I mean, that’d be $2 I wouldn’t have otherwise!
In Summation
That’s all I can think of for now, and this weather we’re having is giving me all the aches. Bed is calling.
Things are changing around here, and I’ve been meaning to update you all on my Lincoln Financial Group appeal for a while now. Better late than never, right?
The first thing I have to report is that last week I signed a retainer agreement with a law firm, and I now have legal representation in my fight against the jerks at LFG. It took me a good long while to find an attorney. I’m too tired to explain why lawyer shopping feels like such an insurmountable burden, but just trust me: it is. Having brain cancer doesn’t help, but that’s not even the only reason why it’s so hard.
The important thing is that now there’s someone else out there to deal with the Anns and the Sherris of the world. Those loyal, dutiful insurance company employees who (I assume) must pretend every day that they wouldn’t be scapegoated in a heartbeat by their corporate overlords.
Ahem, sorry. Promised myself I wasn’t going to give in too much to the anger today.
In the meantime, I’m going to try to enjoy the fact that I no longer have to restrain myself from signing off every email to Ann or Sherri (or whoever the hell it is this week) with, “Thank you for your kind attention to this matter. Now get diarrhea, you miserable cow.”
(I probably don’t need to say this if you’ve been reading my blog for a while, but if you’re new here you should know that my Lincoln Financial Group appeal doesn’t exactly bring out the best in me.)
OK. So. I think I’ve mentioned it before, but I’m not actually able to sue LFG yet. I have to complete a second appeal before that can happen. (But I got an email with the subject line “Suess, Emily v. The Lincoln National Life Ins Co” and thought it would make a nice blog title.
Anyway, if they win the appeal for me, my benefits will be reinstated, and the law firm will deal with LFG representatives from here on out. I never have to talk to them again. (Sounds nice, right?)
However, if this appeal is denied too, then I can sue. (That’s the way my long-term disability policy is written.) At that stage these kinds of things typically get settled out of court. I’m no expert on why that is, but having been around the block now a time or two, I’m reasonably confident they settle because 1.) it’s cheaper, and 2.) THEY FUCKING KNOW THEY’RE WRONG.
But this isn’t really about right and wrong for the insurance company, is it? It’s about shareholders and CEOs and making easy money off the backs of the sick, poor, and disabled.
Quick aside: This is your daily reminder not to give your money to Lincoln Financial Group.
Moving on to thing two: I have a new oncologist. She is local to me here in Champaign-Urbana and part of the same health system (Carle Foundation Hospital and Physician Group) that employs my primary physician.
I’m not so much dropping my first oncologist as I am just adding a new one. I will get MRIs and the results here locally, but she will confer with the guy who, at this point, knows my tumor better—you know, if the need arises.
Although the drive to St. Louis wasn’t impossible—and everyone I’ve dealt with at Barnes-Jewish was pretty amazing—it was hard to make that routine trek to Missouri. Plus, finding the money for traveling even just a few hours is a problem when you’re unable to work and the disability benefits you’re owed are revoked by insurance company clowns and the profiteering MDs they find to make false claims about your health, MDs like Samuels and Hartner.
So Dan and I met with my new oncologist, Dr. P, on Monday, and although I was a little nervous about it (I have anxiety issues when it comes to doctors as a result of some terrible experiences) I really liked her. Dan did too. As a result of the consult with her, I’m picking up yet ANOTHER doctor.
Tomorrow morning, at Dr. P’s suggestion, I will be meeting with a palliative care doctor. When Dr. P first said the world “palliative” I was like, Ack! No! But it was because I was mistaken about what it meant. I thought it was terminal care, but it’s actually getting help with managing the symptoms of a serious and complicated illness like cancer.
On the drive home, I wondered out loud to Dan why my other oncologist had never mentioned this to me before. But, you know, maybe he did and I just was so overwhelmed I couldn’t or wouldn’t consider it? Or maybe they assumed I was already getting something like that at home? I honestly don’t know. But maybe the palliative care doctor will have some ideas about helping me with the laundry list of chronic symptoms I’m always dealing with. I’d kind of given up on that sort of thing. Most of the time when I tell a doctor that I’m in chronic pain or my nerves don’t work right or I have migraines, I just get shrugs. Maybe this will be different.
Fingers crossed.
Did you go through a Lincoln Financial Group appeal? How did it go?
If the paycheck was fat enough, would you attest to a lie that stripped a disabled person of the long-term disability insurance benefits she paid for?
Would you?
At least one of your Penn Medicine colleagues would. Shoot, he’d probably even say you don’t know how sick or disabled your patient is if the gig paid enough. I mean, it’s so easy for him to do when he never has to look anyone—doctor or patient—in the eye. He just fills out a report et voila! Robs another cancer patient of her financial security, pads his own wallet.
I wonder if, when typing up his misleading report about me in May, Dr. Lee Hartner figured I’d be too timid or weak to hold him accountable for his profiteering side hustle.
(He should’ve Googled me first. I’ve been writing open letters, blogging about cancer, and just generally sticking up for myself for years.)
Anyway, because individual bad actors like Hartner make it possible for Lincoln Financial Group to rip off disabled consumers and besmirch the good name of do-no-harmers everywhere, I asked Dean J. Larry Jameson to comment on the issue. The way I see it, this is a matter of public interest. If this sort of behavior is the kind of thing Perelman School of Medicine looks for when hiring faculty, maybe patients and med students ought to know.
Unfortunately, Jameson won’t even acknowledge I exist. I guess he can’t be bothered to comment on how Hartner’s lies reflect on Penn, on the Perelman School of Medicine, and on the profession.
Crazy, right? I mean, if Dean Jameson thinks Hartner’s behavior is above-board and medically ethical, why wouldn’t he just say so? And if he thinks it’s unethical, why wouldn’t he release a statement quickly, before the Hartner Stink™ had a chance to get all over the rest of you?
Sorry for the tangent. Back to the original question, which is: Would you do it too?
Sincerely,
Emily Suess
P.S. Maybe you can help me out with another question I have: Why is it only insurance fraud if the patient lies?
As the news of my brain cancer and Lincoln Financial Group horror story garners interest, more people are asking how they can help—even complete strangers. I’m really grateful, but not always sure what to suggest. I figured if I created a list, people could pick what works best.
Subscribe to this blog using the form in the sidebar
Share this blog with someone
Follow me on Patreon (You can follow my page even if you can’t make a pledge)
Take Action
Contact me if you or someone you know has also been harmed by Lincoln Financial Group, Dr. Brian L. Samuels, Dr. Lee P. Hartner, Professional Disability Associates, or Reliable Review Services.
If your employer offers Lincoln Financial Group insurance policies and/or financial products, ask them to switch. Tell them you don’t want to be ripped off.
Ask a journalist to cover the long-term disability industry.
Share Your Stories
If you work for (or used to work for) Lincoln Financial Group, Professional Disability Associates, or Reliable Review Services and have first-hand knowledge of business practices, contact me or reach out to ProPublica.org.
If you have a related story you would like me to share, whether you have brain cancer or another disability or illness, send me the link.
If you or someone you know has a story that needs to be told but need a place to publish it, contact me.
This week I had a phone conversation with an attorney that left me feeling really depressed, like nothing gets better. Ever.
While we talked about the circumstances of my long-term disability denial from Lincoln Financial Group, the attorney asked if I was permanently disabled. She wanted to know: was I going to get better?
“It’s permanent. It’s inoperable,” I told her, “to just be totally frank, things are only going to get worse for me.” Which, you know, barring some miracle is just the truth.
If you don’t have an inoperable brain tumor, you might not know how uttering something like that out loud can settle in your bones while your marrow and your bed team up like opposite-ended magnets to keep you trapped there.
But back to the phone call.
I had spoken with the same attorney in April, and I remember liking her then. I mean, sure her contingency fees were high, but aren’t they all? This call though, it had an entirely different vibe. I pulled the cell phone from my ear, stared at her name and phone number on the display, and made my most incredulous “bitch, please” face while she talked.
“Well, normally I charge a third,” she explained how much of my benefit she would take if she won my appeal, “but your benefit is so small. That’d only be, like, $300 [a month for the rest of your life]. For your contract I’d have to do…probably 50%.”
I was staring at my notes from my conversation with her in April. I’d scribbled “40%” down in three different places. I mumbled something polite, while trying to stifle my ego, but I was immediately offended that the numbers kept changing. Not only did her rate go up since our last chat, but she’d just explained I’d basically be paying a poor penalty.
Then she said, “I have to make some money, you know.”
And that’s where she lost me. For good.
I paid for the long-term disability policy in question to protect me in the event I became disabled and two doctors—and now potentially a lawyer—are trying to pad their wallets?
