A few days ago I had a massive panic attack. Trying to think of something that would help me snap out of it, I asked Dan to “tell me you love me.”
The “I love you” I got back was so begrudgingly given that even in the midst of a panic attack I couldn’t help but roll my eyes and wonder how I could ever get back to bed.
Sensing that he made things worse, he tried again. It was slightly better, but not much.
This hurts so deeply, I can’t. I’ve written before about how I can’t cry, and I’m 99% sure it’s anxiety trying to protect me from myself, from my fear of abandonment.
When you’re disabled and your cancer caregiver is your spouse, it’s so hard. When your spouse thinks he knows best and you have a sordid medical history of people poo-pooing your every goddamn choice, it’s even harder.
Just had a panic attack so I think I’m hitting on something here.
These few short paragraphs have already taken me days to write.
Unwinding Anxiety in practice is something I do when the opportunity presents itself. There’s no cramming for this life test. I resolved the anger and anxious fear triggered by my primary doctor’s recent scolding—and in record time, because of this book.
I have a new primary doctor. I realized I had a choice, and I chose not to accept the added burden of dealing with a doctor who thought I deserved an added burden.
Like usual, I wondered for too long whether I was the problem, but in examining my other doctor-patient relationships, it became obvious that no one else was sending me paternalistic messages in my patient portal.
I had to keep reminding myself, I’m not her enemy; I’m job security. But once that truth took hold…
Once I internalized the truth instead of the fear, I was able to place a phone call to a patient advocate and get things sorted out right away.
Now I have a doctor that is physically closer, afiliated with the same hospital system as my oncologist and uses the same patient portal, AND offers me appointment waitlist options by text.
Honestly, this would be better for me even if my old primary doctor was perfect.
I spent a fair amount of time writing and revising a reply to Dr Scold that I’ve opted not to send. In my experience this kind of self-defense usually carries with it the potential for another interaction. Not really looking for that, to be honest. I prefer to set firmer boundaries.
So I’m publishing my reply here as closure and therapy without including the doctor’s real name.
Might as well get a couple of ad impressions for my trouble, right?
Also—and maybe this is pessimistic—but I think I have a better chance of improving experiences if I post a review for patients than if I explain myself to Dr. Scold. I revised my initially glowing review of her online to one that also reflects my newfound discovery.
I feel good about putting this behind me and moving past the anxiety of it all. I feel good for being able to find my way out of this fear of abandonment.
Because that’s how my lizard brain interprets these things post-2014. That unless I crack the code and conform to unspoken rules or expectations, I won’t be believed by the only people who can help.
Man, fuck that noise.
The reply:
I am not new to disability, but I am new to this level of disability.
I don’t know what information didn’t get communicated on your side, but I imagine it was significant after discovering how much was missing on my side.
Your message was the first time any of the handful of people I’d communicated with at AMG had relayed any information regarding 3 to 6 month office visits for levothyroxine. In addition to being on this medication for over 25 years without such requirements, I have limits. Ignoring them comes with physical and mental consequences.
The difference between the thyroid labs ordered by you versus those ordered by my oncologist were not communicated until your paternalistic scolding.
A couple of months ago, I waited by my phone for a telehealth appointment that never happened. I considered it a forgivable oversight then but wonder now how frequently things are missed or lost in translation and then blamed on the patient.
No one ever offered even an unexplained “no” to my refill requests. Retrospectively, it feels like I was expected to intuit what everyone else was thinking.
It was insulting to have my life reduced to a “situation.” I didn’t need favors or “leniency.” I needed feasible solutions to specific needs.
Wondering where I stand with a physician requires energy I simply don’t possess. My medical anxiety, which I work to minimize, becomes overwhelming when I have to guess what other people need.
I wish you well. I will not be returning to your office for care.
I took an ADA shower today. I haven’t talked about it much, but I’ve been scared to take a shower for a while. In an attempt to make it easier on myself, I’ve tried to figure out why. The hope was that if I could figure out why, I could work on not being scared of it.
My theories are 1.) I am afraid of falling*, and 2.) I’m put off by the sensory overload. The water hurts, the room is cold and loud, and for 12-24 hours post-shower I have shivers and extreme body temp dysregulation. Like I’m in shock.
The reasons I don’t think the muscle spasms and paralysis that make me unsteady are tumor-related are: MRIs show my tumor is unchanged, and I can move more fluidly in the mornings after I wake up. But the improvement only lasts until I’m fully awake.
(I’ve tried Xanax and weed, they make me weaker and dizzier.)
Working with my anxiety has made things better, but almost imperceptibly so. It doesn’t help that I feel like this is all my fault. See, I thought I knew what I wanted when the bathroom was finished, and my brother specified an ADA-compliant fixture that fit my request exactly.
But it doesn’t work for me anymore, and we’ve only been here about two years. I wanted something that would accommodate me if I needed a wheelchair. And, I don’t know, maybe I need one, but I don’t use one in the house. So getting in and out of the shower is terrifying, even with grab bars.
Anxious Me wonders if I was planning too far ahead again, by thinking I needed this shower. Dan hates it, and understandably so, but his stress adds to my own self-loathing, I cringe and tense just hearing the water turned on now.
Mom would let me bathe upstairs in a heartbeat, but I don’t think it’ll do my mental health any good to list the reasons why even with one of those swivel chairs, her fixtures are a physical impossibility in my current state.
I daydream sometimes about getting one of those walk-in tubs, but I don’t have money. And the contractor basically told us back in the day the current shower wasn’t coming out in one piece. (Not maliciously; it came up in conversation.)
So in addition to not having the money, I’d feel guilty about having to destroy the very expensive existing one (which I fundraised for) to install a different model.
Plus, I can’t help but wonder if I’m still just clueless about what I need. Nothing like having a second ADA fixture put in only to realize that’s not helping me either.
I make do with bath cloths and spread out the showers until I feel disgusted with myself, but I don’t think that’s helping me relax.
I dunno. I’m not expecting someone to trundle a long with a solution. I just wanted to write about what’s on my mind.
* It’s been a while since I’ve fallen, but my anxiety is convinced that’s because I only get out of bed when I need to and don’t risk anything otherwise. Some of the falls I have taken were severely traumatic.
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.
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?
