My Accessible Shower

My Accessible Shower

The accessible shower is in! If you get updates on GoFundMe, you likely already know this. But. I. Am. So. Excited. I had to post about it again.

The framing is—as far as I can tell from the pictures Mom sent—complete for the rest of the living space too.

I know this may not look like much now, but I look at it and all I see is the ability to take a shower again without fearing for my life. It took a brain tumor for me to understand what disability and accessibility really meant. But there’s a reason I posted about just the drain a little while ago. And it’s because now I know.

That’s why I talk about it so much. You don’t realize how abled the world is unless you are disabled or you know someone who is. And not, like, “Oh, my co-worker needs to use the elevator.” More like, “Holy shit. The plan is for wheelchair users just to park on the stairwell landing during a fire? People are OK with that? Seriously!?”

Related: I was watching a renovation on HGTV where the new homeowners wanted Chip and Jo to remove one of those walk-in bathtubs and I was screaming internally. “Those are so expensive! How do they know they won’t need that next week?!”

I don’t remember if the fixture got trashed or what. But I hope like hell it could be salvaged and donated to someone who needed it. Because the irony of disability is how little money you’re allowed to have and how much more everything you need costs. I’ve needed one for OVER. FIVE. YEARS. And that’s just counting from my official diagnosis.

(We all know diagnosis was an entire other thing. Unless you’re new here. In which case, welcome. Let me introduce you to my medical baggage.)

Finally, I just want to say I know what a privilege it is to have an accessible shower like this. And I am so grateful. If you have an opportunity to advocate for people like me, I hope you will. The upside is that what disabled people need is usually extra convenient for the abled world. (Ramps, ready-made meals, pre-sliced fruit. You get the idea.)

That’s all for now. Happy Wednesday. And thanks for being a part of this wild ride.

About My Disability Case Against Lincoln Financial Group

About My Disability Case Against Lincoln Financial Group

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.

Oh, SNAP! Signing up for Food Assistance Benefits

Oh, SNAP! Signing up for Food Assistance Benefits

I applied for SNAP food assistance benefits this week. For those of you who don’t know the joys of being disabled and impoverished just on their own, let me tell you how thrilled I am to have had the opportunity to jump through these hoops while working my way up to the second-worst migraine I’ve ever had in my entire life the past ten days.

Actually, let’s skip the part about my migraine. Unless you have them, you won’t understand, and I’ll give myself another trying to explain it.

In order to qualify for nutritional assistance benefits, you have to verify that you have no money. (Which seems weird, doesn’t it? Prove a negative! Demonstrate you’re begging for food assistance because you need to eat and NOT because you enjoy defrauding government agencies! Peasant!)

Oh! I should clarify, the individuals working at the Illinois Department of Human Services who helped me this week. They were lovely people, working to make sure humans get things they need to live. (Well, except for the security guard, but I think every government facility needs an antagonist, don’t you?) The people who treat you like trash are typically “pro-lifers”, libertarians, friends, and family.

Anyway, our case involved submitting 24 pages of supporting documents in addition to the benefit application itself. There were four ways I could submit those documents according to the letter: drop them off at the IDHS office, fax them, mail them, or upload them to the case management thing-a-ma-jig.

Uploading them seemed like the best option, except it wasn’t actually possible. So then I was like, “Well, I’ve got one stamp left.” But have you ever tried to tri-fold 24 pieces of printer paper and stuff them in a business reply envelope? Then I figured, “Well, I don’t have a landline, but I could do one of those free fax services online. But turns out it costs money to send faxes exceeding three pages with those things.

“Dan! You’re taking me to IDHS today!” He was gearing up for a trip to the pharmacy. “Don’t leave without me!”

Can I just say that parking at IDHS in Champaign County is absurdly inadequate? Even with my accessible parking placard, there wasn’t anywhere to put the car. “Can I drop you off?” Dan hesitated. You could tell he didn’t really like the idea.

“Yeah, do it,” I said. “I’m not coming back here later.” I didn’t bring my mobility aid because in that particular building it’s easier to grab Dan’s arm. But without Dan’s arm? We were taking a bit of a risk.

I didn’t fall though, I just felt like I was going to fall for a solid 15 minutes. (You can’t just leave sensitive documents in a box somewhere, you have to stand in line and physically hand them to the guy sitting behind the Plexiglas.)

Anyway, here’s hoping we get approved soon. Dan and I can really eat well on this SNAP stuff. If it’s anything like 2017’s season of medical bankruptcy, we could get $15* a month. TO SPLIT BETWEEN TWO PEOPLE.

It’s a really good thing Dan and I have this social safety net here, since I didn’t bother to buy a long-term disability insurance policy in case something like a brain tumor ever happened to me one day

…oh, wait!

*Don’t buy toilet paper with SNAP benefits. I’ve never seen it happen, but legend has it conservatives and libertarians will sacrifice a kitten if you try.

On Being Disabled

On Being Disabled

This list on being disabled was originally published on my Facebook page, but I don’t Facebook anymore and I wanted to preserve and update it.

Inspired by the disability community on Twitter who have compiled similar threads, I wanted something to point to the next time someone says to me “you could work if you wanted to” or “you’re asking for special treatment.”

Okay then. Here we go.

Being disabled is being forced to perform your disability for doubters and then immediately being accused of acting. Abled logic can be summarized as: I can fake being disabled, therefore your disability doesn’t exist.

Being disabled is rationing your asks for help, because you’re scared people will get tired of you and abandon you completely. (Because they have, and they do.)

Being disabled is being charged a surplus (sometimes called a disability tax) on the things you need to survive, by people who don’t need the extra money, and then being accused of being a taker.

Being disabled is being called dramatic when you lash out at people who are doing things that will kill you.

Being disabled is being called rude because talking about your disability makes abled people feel uncomfortable.

Being disabled is being shamed for collecting benefits on an insurance policy you paid for, then having those benefits taken from you, then listening to someone bitch about their car insurance rates going up “just because they made a claim.”

Being disabled is having an insurance company tell you the date you became disabled was the day your doctor diagnosed you, even though you couldn’t get a doctor to listen for more than two years.

Being disabled is hearing, “you just want to be disabled” so ableds can pretend it can’t happen to them.

Being disabled is being called a complainer for mentioning you need accommodations then being asked why you never said anything when you can’t participate.

Being disabled is telling abled people what it’s like to be disabled and then being labeled an attention-seeker.

Being disabled is telling other people they’re harming you, and instead of stopping and apologizing, they come at you with a defensive attack.

Being disabled is operating on a battery that only charges to 30% and then being told that because you emptied your own dishwasher last week you could do dishes at Ponderosa 40 hours a week.

Being disabled is smiling at abled people who say they know what it’s like to not sleep for weeks because sometimes they drink coffee before bed and getting up for work the next day is just the worst.

Being disabled is researching and diagnosing yourself because your care team can’t or won’t and then being scoffed at by a nurse practitioner for using big, fancy words like “seronegative.”

Being disabled is having abled people say these problems are not systemic—that you’ve just encountered a couple of bad doctors or you’re a difficult patient—because they’ve never had a similar experience. Ableds won’t admit it’s because they rarely see a doctor.

Being disabled is saying these things over and over every day and then watching it all unfold again, just like before, day after day after day after day.

Being disabled is understanding completely that you don’t know what it’s like to be somebody else while somebody else pretends they know what it’s *actually* like to be you.

Being disabled is being told how lucky you are to have the ADA now and then being told it’s on you to file a lawsuit to enforce it.

Being disabled is being stuck inside or outside a hospital bathroom labeled “accessible” because the door is too heavy to push.

Being disabled is being bombarded with inspiration porn about how some disabled people have done extraordinary things most abled people can’t do and then being expected to do something similarly monumental or else be ashamed of yourself. (But it’s OK if an abled person claims a mental health day because she wants to go shopping. She can’t be expected to perform all the time.)

Being disabled is contributing to the social safety net for decades, being paid less than a dude who didn’t work as hard as you, having a smaller 401(k) and savings account as a result, receiving less in disability benefits based on past earnings, and then being called lazy by a Young Republican whose parents are currently buying his C-average college education.

Being disabled is taking the time to compile a list like this knowing that the people who need to be educated won’t actually read it.

Lincoln Financial Group Denies Disability Benefits to  Brain Cancer Patient

Lincoln Financial Group Denies Disability Benefits to Brain Cancer Patient

Turns out being denied disability benefits is a lot like being married to a narcissistic, philandering jerk. Who knew!


“It’s not that you aren’t entitled to have multiple partners if that’s what you want. It is your life after all. And I didn’t force you to propose; I wasn’t even the one to bring up marriage. But my beef with you now is that YOU promised to do this whole monogamous thing, and that it was a lie. I never would have consented to this and you knew that.

If you’d have been up front from the start about your unwillingness to keep your dick in your pants, I could have said, ‘Nah, that shit ain’t for me,’ and you’d be someone else’s problem.

Instead, you’re having a mantrumbecause you’re being held to account for your wedding vows.

–Me to my ex-husband, 2008


This might be a weird parallel to draw, but I feel much the same way about Lincoln Financial Group today as I did about my ex-husband over a decade ago. I’m not mad that Lincoln Financial Group doesn’t want to pay disability benefits, I’m mad that they got me to buy a policy based on their industry-standard pie-crust promises to provide a modest monthly income if the unimaginable happened.

Well, the unimaginable did happen, but instead of honoring the policy, they hired strangers to gaslight me and stopped paying my claim.

And so now I’m over here like, “Look, LFG, no one’s making you sell disability policies, and no one’s making you call disabled people liars. If what you really want to sell is a junk policy that doesn’t pay, fine. Knock yourself out. Just, you know, present it as the trash it is so that I can say, ‘Nah, that shit ain’t for me,’ and you can be someone else’s problem.”


One thing I learned from being married to a compulsive liar for four and a half years is that being gaslit is psychological torture. I mean, sure you hear stories and read about the damage it causes, but when you live it. Jesus H. Christ on a bike. It’s really something.

Survival for me during my marriage to Husband X was only possible by repeatedly and publicly sharing the truth, because people like him count on their marks to be too scared and too ashamed to go public. It’s the same for companies like LFG.

I tell you all this because I’m about to share some very sensitive and very private information in a very public manner. Those of you who have never endured a situation like this might even wonder what in the world is wrong with me. All I can say is this: I’m not doing anything wrong; Lincoln Financial Group is.

I’ve been spinning my wheels trying to explain my story to people for a couple of months now, but I think it would be more effective for you to see exactly what Lincoln Financial Group knows about me. Once you read that, and then read their response, you can make an informed decision about this whole mess. Maybe you have a policy with them, maybe you don’t. Maybe you’ll continue to give them money, or maybe you won’t. Maybe you’ll look at an insurance plan or investment plan offered through HR at your new employer by Lincoln Financial Group and say, “Nah, that shit ain’t for me.”

Anyway, unlike the folks at LFG, I’m going to be totally up front: There’s only a small part of me that’s doing this to keep you from becoming their next mark. But there’s a HUGE part of me that’s doing this because I want to have even the slightest impact on their earnings report next quarter. (Also, if people started faxing Xeroxes of their hairy butts to 402-361-1460, that’d cheer me up too.)

So here we go, I give you an ever-so-lightly redacted report written by my primary physician and submitted as part of my first appeal to Lincoln Financial Group:

View PDF

Of all the people unfortunate enough to be involved in this clusterfuck of Lincoln Financial Group’s making, my primary physician has known me the longest. She was my doctor back when the men of the medical world still thought I was whiny and just had fibromyalgia, the debilitating condition they pooh-poohed as the self-inflicted curse of the 30-something fat woman.

After I submitted the detailed note above (given to me by my primary physician to use as part of my appeal) Lincoln Financial Group’s claim rep responded* sharing their paid consultant’s report. They’re basically saying my primary is full of shit and that they plan to deny my appeal, but because they’re so kind I get an additional 21 days to submit more stuff they’ll probably just ignore. Here’s that correspondence and report:

View PDF

Finally, an addendum written by my oncologist, which I recently requested in writing because LFG’s consultants claimed my oncologist said things that my oncologist’s office denies saying:

View PDF

It should be noted that I have not yet sent this addendum from my oncologist to LFG, as I’m still composing a letter and waiting on a couple of additional documents to send along with it before the June 19 deadline.


Right now it feels like LFG wants to drag this thing out. The way their policies are written, a claimant who is denied disability benefits has to go through a first and second appeal before she can file suit. From my perspective, I can’t see how that’s more cost effective for them than just honoring the damn policy. But who knows. Since it’s all just a numbers game for them, maybe they’re betting on me to die before they ever have to pay another penny.

If I do die before this matter is settled, please know that my last wish was for you to help me spread the truth of their horribleness far and wide.

EDIT 6/9/19: You can send a fax to Lincoln Financial Group for free from your computer using It doesn’t necessarily have to be a Xerox of your butt for it to get their attention about my denied disability benefits.

* It should also be noted that aside from basic things like my name, age, and diagnosis, LFG’s consultant is wrong about pretty much everything. He, like their first consultant, has never met me but made money off of my being denied disability benefits.

Falling Out of Chairs is My New Superpower

Falling Out of Chairs is My New Superpower

The plan is to start editing the memoir today, but I hurt myself cleaning my office on Saturday, so we’ll see how much I get done. Let me tell you about my injuries. It should be entertaining. But first, a little backstory before the whole falling out of chairs thing.

I’m not a neat freak. I like organization and I have my pet issues, but if I’m the only one to do the work of cleaning and organizing a room? Things can go long periods without being tidied up or sorted. The one exception is my work space. If I’m going to use my office and desk, they absolutely cannot be cluttered. Seeing that sort of mess (or just knowing it exists, if I’m honest) powers down my left parietal lobe.

Fun Fact: Back in the days when I could work 9 to 5, I would usually stop what I was doing every day at 4:55 to clean and organize my desk for the following morning. Because chaos on my desk always translated to chaos in my mind.

Well, as you may know, I spent a large part of January fighting bronchitis. During that time the office wasn’t just neglected, it became the de facto foster home for any object displaced by Christmas decorations or otherwise existing without spatial designation. That meant if I wanted to start using my office for writing and editing again (and I did) I would have to clean first.

Things were going okay until it was time to vacuum tumbleweeds of pet hair and traces of cat litter. I became fatigued (as I am wont to do) and decided that it would be easier to sit in my office chair and scoot around while I vacuumed Cat Box Corner . I’ve done this many, many times before.

Thing is, this time I leaned a little too far forward in the chair. As my weight shifted to the front of the chair, I pushed it out from under me sending it across the room behind me. I screamed, dropped the vacuum hose, and lay supine while the Shark blew hot, dusty exhaust in my face.

Yes, that’s right. I fell out of a chair. Vacuuming.

There were three cracks on the hardwood. My tailbone, my elbow, and the back of my head. No serious damage, nothing broken. Just a couple of bruises and one of those nausea headaches brought on by a minor concussion and head-to-toe muscle tightness. All exacerbated by the fact that my brain tumor already tells my nerves to record a response of PAIN to any and all stimuli.

Good times.

Anyway, I still hurt more than usual, but I’m excited to get back to work on my untitled memoir. (I actually had a working title for it, and then found out — after Google searching potential domains — that that title was already taken, and so now I’m back to untitled again.)

Uh, Why Can’t You Work Again?

Uh, Why Can’t You Work Again?

I had a new message in my patient portal at Barnes-Jewish Hospital / Siteman Cancer Center today, and since I hadn’t recently completed any tests or had any doctor’s visits, I was curious. I opened it to find this message:

Hi Emily

I have been working on your paperwork for [REDACTED], long term disability paperwork and had a couple questions for you. From reading your chart, it appears the last time we saw you, you were doing well and are not currently in treatment. What kind of work do you do? What kind of symptoms are you having that are causing you difficulty at work? Do you have any limitations to your daily activities? Also, do you have a new phone number? Both the number we had for you and for your emergency contact are not working.



So, I rambled a reply:

I don’t know what doing well means. I can walk on my own, but the brain tumor can’t be removed and it limits my balance and mobility. I have frequent migraines, am unable to drive due to permanent dizziness/vertigo/nystagmus, and have chronic fatigue because where the tumor sits on my brain stem it interferes with autonomic functions. I am not dying, so that’s good. But I’m permanently disabled because the tumor cannot be surgically removed due to its location. My chemo therapy and radiation are done, but they didn’t cure me. I used to be a technical writer for a mathematics software company. Fatigue limits me greatly from doing the physical labor required just to get to a job. If I did do a job, I would literally not have the energy left to do basic things like load the dishwasher, cook a meal, take a shower, etc. I often have to pick one or two activities I can accomplish for the day and rely on my husband to pick up the slack. This is just what the doctors call my “new normal”. So, I’m not declining, but I haven’t gained back all of the abilities that the tumor deprived me of. Our phone numbers haven’t changed. Not sure what the issue is there.

My cell phone: [REDACTED]. My husband’s (Dan [REDACTED]) cell phone: [REDACTED].

Hope this is helpful, sorry if the response seems terse. I’ve talked to
[REDACTED] about this already. They only have like 5 months left to pay on the policy, and it’s an inoperable brain tumor. It kind of stresses me out. They don’t even have to pay the policy’s full 60% (or whatever the number is) of my former income because they subtract what I get from SSDI. Gah, sorry. I know this is not on you. Insurance stuff just makes my blood boil.

It probably doesn’t help my mood any that I am still recovering from more than two weeks of being muggle sick on top of the brain cancer. The antibiotics are helping, but they are strong and my gut is weak. I’ve been spending a lot of time in the bathroom despite downing multiple glasses of Tropicana probiotic juice several times a day. It also doesn’t help that losing this income in May weighs heavily on me. So much so that last night I dreamed we had to give up our house and move to a freaking dump.

I just want the insurer, WHO I FREAKIN’ PAID FOR THE POLICY, to fulfill their end of the agreement for what little time is left on it.

Silly me, plans are for healthy people

Silly me, plans are for healthy people

I had big plans for the start of 2019 involving Zentangle videos, regular website content, and editing my manuscript. But on New Year’s Eve I came down with a horrible bug that turned into a pretty serious infection and a diagnosis of sinobronchitis. Plans are for healthy people, not the chronically ill.

In total, about 7 of us that spent the holidays together at my Mom & Dad’s ended up sick. Initially, my plan was to wait it out, because I was less sick of the bacteria swimming around in various parts of my respiratory system than I was of seeing doctors. But then Dan came down with it–and when he could no longer hear, he said, “That’s it, woman. We’re going to Convenient Care.” It was Day 5 for him, day 11 for me.

Because we both had coughs, we were asked to sport those fancy paper masks. I got some pretty potent antibiotics (that are currently tearing up my digestive tract, yay!) and have been taking them since Thursday. I think I am feeling better, but it’s hard to tell. Recovery is not linear.

So that’s 15 days of being sick, which, sadly, is several years shy of my record. But terrible nonetheless.

Anyway, I will get back to posting videos and my #FaceADay stuff on Instagram again. I swear. I just have no idea when, because plans are for healthy people. Hope your 2019 is off to a much better start!

I Really Love Markers

I Really Love Markers

It’s getting easier and easier to pedal for 90 minutes a day in 30-minute increments. Next goal: adding some new exercise that requires me to use muscles in my torso, back, and shoulders.

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