A Disappointing Lack of Candy Coffee

A Disappointing Lack of Candy Coffee

I didn’t order a candy coffee with my breakfast this morning. (“Candy coffee” is what my dad called coffee with anything in it that actually made it taste good. He wanted his plain.) I contemplated it, but I slept so well last night, I couldn’t sabotage myself with caffeine today.

Now, if insomnia visits me tonight anyway, I will truly be pissed.

It’s funny because when I was younger, I’d drink caffeine all day long and still sleep so well. But I inadvertently got off the sauce during treatment when everything tasted awful, and now I’m hypersensitive to the stuff.

As the kids say, fuck cancer.

I’ve been tweaking the website and trying to find more affiliate partners the past couple of days, but it’s a pretty slow process. None of these sites are optimized for mobile devices, and it’s a real headache trying to use them on my phone.

Aside: If you’re reading this, ShareASale and Commission Junction, make a mobile app. Pronto. Us disableds deserve easier navigation.

Anyhoo, I realized it has already been two weeks since I sent those e-mail queries for Who You Gonna Believe. I sent about 7 emails total, and so far I’ve just heard back from the one. I have no expectations, though, I’m just reporting in for anyone who’s curious where that stands.

With my new health insurance allowance for OTC stuff, I have ordered compression socks. I got the seamstress tape out and measured my calves and everything. I don’t know if it will help my muscle fatigue or not, but I’m always a little hopeful about these things. I have to be.

Speaking of health insurance, Dan’s old coverage is still in effect. So the appointment we were worried about was covered. At least until the insurance company recognizes their mistake. But I’m not telling those jerks anything. They can figure it out themselves. I figure they owe him a lot more for their previous coverage denials than that one appointment could possibly cost.

Related: the stress of the coverage conundrum had his blood pressure all over the place to the befuddlement of his primary care physician. (The one he likes that he can’t see anymore because he has new insurance.) “This is what anger and uncertainty does. I’ve been stressing about this for a week.”

Put that shit on a bumper sticker.

Say it louder for the people in the back.

One hundred percent.

Meryl Streep standing ovation dot GIF.

Health Insurance, Trump Memes, and Car Doctors

Health Insurance, Trump Memes, and Car Doctors

This week wasn’t terrible. I got Dan’s insurance sorted out, I read some fantastic stuff about Trump being forced to look at the memes created about him, and the Corolla is being fixed after the maintenance light came on.

It would be an understatement to say I wasn’t looking forward to sorting out Dan’s health insurance since he lost Medicaid last month, but yesterday’s phone call went so well—despite it taking an exhausting 90 minutes.

I was doing something wrong when I tried to sign up on the website by myself and a subsidy wasn’t being applied, so long story short? Dan’s ACA premiums went from a hypothetical $700/month to an actual $25/month.

I’m so relieved.

While I was talking to the agent, he got me something better than plain ol’ Medicare too. Without me having to pay any additional monthly premium. It’s weird being young-ish and on Medicare because of disability and not age. Everything is marketed to people 65+.

But 44 year olds with brain cancer exist. Ask me how I know.

So, folks, I have dental insurance for the first time in almost 7 years. If I wasn’t dehydrated today, I’d cry actual tears.

The local agent also understood YouTube monetization and knew what Zentangle was, so I didn’t have to spend extra energy trying to explain my non-SSDI income like I usually do.

So yeah, it was 90 draining minutes, but it was worth it. Then Mom got us Blizzards, and we all know that ice cream heals.

***

Trump. OMG. Have you seen the potential juror who was recently granted citizenship? She was dismissed because she admitted she couldn’t be impartial, but added that she thought Trump would be orange but he was actually more yellow.

I just. My sides hurt from laughing, y’all.

Setting aside the press feeling entitled to out and endanger jurors, the process of voir dire has been a hoot to watch because Trump has to look at memes posted by potential jurors.

Oh, oh! And I read that one guy (who wasn’t selected for obvious reasons) posted an AI fake of Trump saying “I’m dumb as fuck.” 

Donald Trump meme. He has his eyes closed. Text, in Godfather font, says: the Nodfather

I’m petty, and I’m here for it all, including the jokes mocking Trump—the man who made it his personal mission to brand Biden as “Sleepy Joe”—for falling asleep in court.

And if a split second of self-awareness is the only consequence he ever sees for all the laws he’s broken in plain sight, I’d kick myself for not making the most of it.

***

As for the car. We’re taking it to the shop my dad trusted and my mom still goes to. It needs some Toyota-recommended maintenance, but also new brakes. And other things I’m too tired to list. And you probably don’t care about anyway.

Happy weekend.

I Hate Making Phone Calls

I Hate Making Phone Calls

I need to make some health insurance phone calls this week, and I am dreading it. To the point I doubt whether I can do it. I sat down for an interview with myself to find out why I hate making phone calls so much.

Me: Is it because you hate the phone?

Also me: Partly. I have loathed it since my days at the city hall switchboard.

Me: Is it because it’s tedious health insurance stuff? Again?

Also me: I really would like a break.

Me: Is it because it’s physically difficult to speak?

Also me: Definitely. It’s exhausting trying to make these pipes pipe. My words are hard to understand because even my face muscles and tongue are tired. I often have to repeat myself, and it’s just physically and emotionally exhausting to be reminded how sick I am.

Me: Is it because you have brain fog and the situation and system are complex?

Also me: Fuck yes.

Me: Is it because you’ve internalized the messages that say you’re not just responsible for your health and financial situation but also to blame for it?

Also me: Also yes.

Me: Is it because you have to waste your limited energy being sick, thinking about being sick, and then you are rewarded with only the profound sense of your own mortality and an almost guaranteed promise there will be no solution, just more phone calls?

Also me: [weeping]

PayPal | GoFundMe | Wishlist

Healthcare for My Enemies

Chances are if you’re friends with me on Facebook, you saw some drama go down on my page this weekend.

It started with me posting a few updates about my husband being denied the meds he needs. That post led to a woman telling me to “shut it.”

It was her opinion that because I wasn’t working, I had no justification for lamenting our situation (which is that I have brain cancer and my caregiver has a chronic illness that is going untreated, not because the condition is untreatable, but because our insurance–Medicaid–claims there is “insufficient medical necessity” for the medicine prescribed by his doctor).

That he doesn’t need the Humira for his psoriatic arthritis is an outright lie, however. Just look at this. Look. At. It.

Anyway, in discussing that we have been on Medicaid and SSDI openly online, countless trolls and bots have suggested, like this woman, that patients like me don’t deserve the health care we do get and have no right to complain about the health care we don’t get.

‘Mer’ka. Yeah!

This weekend was the first time, though, that someone I knew had told me that I specifically am unworthy of care or of demanding a certain standard of coverage for my husband.

***

At first I was seething with rage. Today that rage has given way to hurt and a complete disillusionment in all of humanity.

I spent two hours at the hospital getting IV fluids this afternoon. Alone with my thoughts for all of that time, I just kept wondering how many other people thought I shouldn’t be allowed to have the infusion. It was a depressing couple of hours for sure, and I haven’t yet completely pulled myself out of the funk. (I will in my own time, don’t worry.)

I used to think that people who cried “freeloader!” just couldn’t empathize with a nameless, faceless group of people they’d been told to hate. That if they knew someone who was sick, they would change their tune. Step up and demand humanity from their family, friends, neighbors, and political representatives.

Good night was I ever wrong.

***

When a friend of mine suggested I come up with something nice to say about this woman to help me shake off the dust and dirt, all I could think of was this:

“Well, if you’re looking for a friend who doesn’t coddle you with positivity just because you have brain cancer, Brenda’s* definitely your gal.”

I just want to say that everyone deserves good, affordable health care. Even Brenda. And words can’t express how begrudgingly I say that.

* Not her real name.

Inclined to Recline

Inclined to Recline

On Wednesday, a new recliner arrived at our home via UPS. Believe it or not, I have not had a recliner in my home since something like 2003. That was three cities and a whole state ago. Sheesh.

For weeks, I’d been spending too many waking hours in bed or trying to get comfortable and see the TV from the living room couch. My neck and shoulder pain was only increasing, and I was depressed. Spending hours upon hours in bed made me feel sad and incapable.

Power ReclinerSo, I used some money from my YouCaring campaign to purchase this power recliner from one of those online stores always being advertised on HGTV.

I didn’t have to leave the house to shop for it. (Going out in public is hard—harder than it was when I was getting daily radiation treatments, but I’m also a little skittish about the possibility of getting “normal” sick because the dexamethasone “may lower my body’s ability to fight of infection.” So I stay home except for the odd trip to the ER.)

The chair basically just snapped together. And it’s comfortable. And my cat Izzy likes to join me for afternoon naps.

Now I can sit by the picture window in the living room and watch the birds and squirrels at the feeder and bath. When I lie back, I can look up and watch clouds float by. And when we’re binge watching Orange is the New Black, I can watch relatively pain free.

It’s nice.

***

Speaking of the dexamethasone, I’ve been back on it for about a week now. I generally feel better, but I’m not thrilled about regrowing unnatural facial hair. (If I’m honest, probably another reason I stay home these days.) They might be wispy and blond chin hairs, but they light up like the sun glistening on Lake Michigan when exposed to daylight.

The more important thing, though, is that I am eating and drinking again like a normal person. Everything tastes delicious on dexamethasone. Everything.

***

Thursday night I signed us up for health insurance through the ACA exchange. We still don’t officially have health insurance. They have my money, but BCBS of Illinois has things “under review.” It really, really sucks losing your job because you’re sick with brain cancer and losing your health insurance at the same time.

I know that, at least for now, I’m not supposed to be declined insurance for a pre-existing condition, but I don’t trust insurance companies. They’ve got ways of wriggling out of their responsibilities. And I am quite aware that should something not go in my favor, I have next to no resources to fight them.

What bearing should a person’s employment have on their ability to access healthcare? Why should someone with so much health-related stress be forced to navigate a ridiculous bureaucracy in addition to fretting about paying the mortgage without stable income?

I have to stop thinking about it or I stress too much for my own good.

***

While there’s plenty for me to worry about, I do want you to know that I’m more optimistic than this post lets on. I can’t stand the thought of people worrying about me too much.

Thanks to all who have donated and promoted my fundraiser, sent cheerful gifts, messaged me with words of encouragement, and who check in on me when I get a little quiet.

Enjoy your weekend!

 

Pin It on Pinterest