One of My Favorite Things

One of My Favorite Things

One of my favorite things is people telling me how they need guns to feel safe this month while just last month they were mocking me for wearing a mask and getting a booster because I was a scaredy cat or a chicken or a sheeple or something.

Fundraiser Progress

I already have vertigo and nystagmus. I really don’t need more involuntary eye rolling. 

Also, can someone explain to me why it’s okay to tell someone to suck on a lemon but not okay to tell someone to suck on the barrel of a gun? 

If lemons don’t kill people and whole guns don’t kill people, surely just the barrel doesn’t kill people either. Why be offended? Please explain it to me like I have a brain tumor.

Okay, now that I’ve got the snark out of the way, I want you all to know a couple of things.

First, I voted. Early. By mail. Did you know you can get vote by mail ballots in Illinois for every primary and general election?

Here’s how to request a ballot by mail in Champaign County.

If you’re in another Illinois county, look up your county clerk’s website.

If you’re in a state with restrictive, outdated voting policies, I’m sorry. You deserve better. Even if I personally think your politics are terrible.

Second, Izzy was on the counter, and we opted to take a picture of her act of defiance rather than punish her, because in this house we encourage authoritarian resistance.

Izzy (one of my favorite things) sitting on the counter (not one of my favorite things).

Seriously, folks, vote every chance you get.* You might accidentally make something better.

* Don’t only vote, but at least vote.

Boomer’s Chronic Hepatitis Diagnosis

Boomer’s Chronic Hepatitis Diagnosis

Boomer’s medical story really began on Twitter. Since I don’t use that site anymore, though, I thought I’d post an update here on the blog regarding his chronic hepatitis diagnosis.

I had no idea dogs could get the disease. But my first dog had seizures, and I didn’t know canine epilepsy was a thing until that  diagnosis either.

I got a call from the U of I Veterinary Teaching Hospital yesterday with the final panel of results. The last test wasn’t for a diagnosis so much as to check for and rule out primary copper toxicity, which some dogs can get due to poorly regulated pet food here in the States.

But the vet concluded that copper toxicity is not the primary issue or the issue at all really; and so his diagnosis is chronic hepatitis.

Since Boomer is a rescue and we adopted him at a year old–give or take–we don’t know exactly how he got hepatitis. But the vet says the good news is that his liver is still functioning well.

With supportive meds, we hope to help protect him from inflammatory episodes like the one that prompted us to take him to the small animal ER last month.

I don’t really feel like talking about how much those meds are going to cost. But for the record I also don’t feel like I’m being ripped off, which is in stark contrast to how I feel about most human meds.

Anyway, Boomer is moving around like he never even had surgery for the liver biopsy. He is sporting an impressive scar on his abdomen though, and he is slowly regrowing fur where they shaved him for the operation.

He is the sweetest, goodest, handsomest boy. I can prove it too.

ADA Bathroom Plans!

ADA Bathroom Plans!

After spending last week with Mom, daydreaming about these ADA bathroom plans, and waiting out more tornadoes in her basement, she drove me back to Urbana and helped us remove the wood shutters from the exterior of our house.

We have new ones to install to spruce up the place in preparation to sell, and I’ll share the AFTER pictures in a couple of weeks when that exterior work on the house is done. But the picture above is how things looked while removal was in-progress this weekend.

By the way, if you’re local and want free wood shutters, they’re sitting at the end of our driveway. I put a notice up on NextDoor though, so I can’t promise how long they’ll be sitting there. (We just watched Karen from the Indianapolis-based HGTV show Good Bones make head- and footboards out of some she had stashed away. Did I mention they’re free? Just saying.)

Anyway, as promised I created a GoFundMe for the remodel at Mom’s place, and I also tried setting up an integrated donation option here on the website for those who prefer giving through PayPal instead. I think the minimum donation for GoFundMe is $5 and the minimum donation through my website form is $3.

Full disclosure: I’ve never used the WordPress widget linked below, so if you’ve got $3 and want to help me test it out AND get closer to having that ADA-compliant shower installed, get clicking (or tapping or whatever).

UPDATE 1:41pm: I’m having issues getting this out of test mode and connecting it to my PayPal account. It’s broken. Sigh.

UPDATE: 2:13 pm: It wants me to set up a business PayPal account, and I am not a business. So, I’m scrapping the original link and putting in a plain PayPal link. (Continue reading for more options.)

Here are the plans for the bathroom that my brother Ryan put together. Words cannot express how excited I am to take a shower without risking my life. Walking around with a brain tumor in my head is quite enough thrill-seeking adventure for me, thank you very much. I’d like to move on from our current 1963-built nightmare of a tub/shower and step (or roll, when necessary) into a zero-entry shower if it’s all the same to everyone else.

ADA bathroom plans printed out.

Anyway, happy Monday to you. Here’s a list of all the ways you can help out if you are so inclined. Some of them are totally free!

Watch a video on my YouTube channel.

Place your next Amazon order using this referral link.

Give to my GoFundMe campaign.

Give through Paypal.

Make a donation to @EmilySuess on Venmo.

Make a donation to $EmilySuess on CashApp.

Share this (or any of my links) with your friends on social media.

Packing and Decluttering for the Move

Packing and Decluttering for the Move

Last week Mom came up to Urbana to help us start packing and decluttering. The week before that, my brother and sister-in-law helped us make some repairs in our main bathroom. (That was after my SIL ran 13.1 miles. She is unstoppable.) We don’t have a move date yet, but we don’t want to feel pressured when the time comes either. We are hopeful to get it done sometime this year.

Mom and I started with the room that seemed the most overwhelming to me: the office slash studio slash just-put-it-there-for-now-and-we’ll-deal-with-it-later room.

This means we packed away the majority of my art supplies. It was the right decision to make. Because, yes, I always feel like I should be drawing or coloring or painting or recording or editing a new video, but, no, I should not be prioritizing any of those things right now. It’s been so long since I’ve posted anything new to my channel, but it’s just going to have to be a little bit longer.

Having things (at least in this room) packed away neatly reminds me that I am doing exactly what I should be doing in this moment: preparing for a life change. There will be time to do more art when the move is done.

Here’s what the office looks like now. Mom brought her shredder for me to borrow so I can sort through the papers that have accumulated since we moved here in 2015.

Everything else is stacked in the closet and the boxes are labeled. Having just this much done makes me think what we are about to do is actually possible. Before, when all I could do was think about how impossible everything felt, all I did was worry. And, frankly, without help it would be impossible. I’m so grateful for everyone who has chipped in since my brain tumor diagnosis in 2017! This is just the latest in a long line of things I have to be thankful for.

Mom also helped us get the Wedgewood that belonged to Dan’s mom safely packed away for moving, and she made the first (of likely many) donations to Salt & Light, our neighborhood grocery and thrift store. We even got a small desk out to the curb that was picked up by someone too. Now the office can just be the place where all the packed stuff goes until IT’S TIME.

At mom’s, the basement remodel is moving ahead. Ryan’s plans are amazing and they’ve already chalked in lines where the rooms will be. Because costs are pretty high, and no construction project is complete without a few unanticipated challenges, I will be setting up a GoFundMe shortly for this project, separate from my medical fundraiser. As always, no one is pressured to give anything, but just be prepared for me to promote it. I’ll share more about it later once I have time to get everything set up.

Anyway, that’s where things are at the moment. Happy Monday.

My Cancer Diet

My Cancer Diet

My cancer diet caveat:
I’m not telling you what to eat. I’m talking about what I eat. If you feel like you need to tell me what I eat is wrong, knock yourself out. But know that I don’t care, particularly if you’re not my doctor.

Before I knew I had brain cancer, I spent A LOT of time with my local gastroenterologist. I was medically tested for ALL the food sensitivities, intolerances, and allergies. I have none.

For years, I tried elimination diets hoping to find out what I was doing to cause so much harm to my GI tract. And all the answers were always, “Girl, nothing. It’s not your diet.”

In hindsight, having my brain cancer diagnosis, I’m like, if my diet gave me this rare brain tumor? Well, it wouldn’t be a rare tumor would it? And people all over the Midwest would be breaking out in tumors in their mid-thirties.

Despite what the world would have me believe, my dietary choices were not the cause of my problems.

I mean, the GI distress was very real. But I was not lacking self control. I would have gladly given up anything to feel better–sugar, gluten, dairy, meat. And for different phases of my great dietary experiment, I did.

The problem was that the problem wasn’t food. In all the giving up* though, I accepted that whatever illness I had was not going away simply because I swore off eating food I liked.

That’s not to say I didn’t learn something in all that time. In fact I learned to listen to my gut, literally and figuratively.
Some foods are harder for me to digest and require more energy to process, so I avoid them. I don’t cut them out 100% because 1.) I’m both too laid back and too tired for that, 2.) chemo means craving foods that you only see once (if you know, you know), and 3.) disability and socioeconomic status mean not being hungry gets top priority.

And when I’m taking chemo, I am all about getting through the day without an emesis bag.

Anyway, this post is for two audiences. First, my fellow cancer patients and poors. Your diet doesn’t define you, and it’s healthy to eat what you like. Diet culture is the poison.

Second, internet randos with all the answers. It’s okay for other people to eat differently than you. Let it go. And if you just have to give unsolicited advice, don’t be surprised when we get pissed off.

*The freaking irony of not giving up on giving up. It burns!

Emily Writes a Bullshit

Emily Writes a Bullshit

On Thursday night I started deleting more than 77,000 tweets and 91,000 favorites from my Twitter timeline. 

“I regret all that time I wasted making content for someone else,” I told Dan while TweetEraser chugged away for several hours.

If you don’t really use Twitter, you may not know the latest drama. But long story short, its profit-centered model coupled with the potential Elon Musk buyout made it mis-er-a-ble to be there, especially if all you want to do is hangout with your globally distributed friends.

The almighty algorithm, not unlike the one on Facebook, rewards people who are abrasive and abusive. So I finally noped out of there.

(I don’t know if y’all know this, but I have brain cancer. The old saw “life is too short” means something extra to me.)

People have asked a couple of times what I used to delete my posts. TweetEraser was mentioned to me by a Twitter friend who knows her shit. So I didn’t hesitate. I paid a one-time fee of $7 to strip the account, but that’s because I had way more tweets than patience. You can also do some deleting for free, but there are limits.

Of course, first I downloaded my data and tweet archive. I spent 12 years there after all. While your hardcore anti-Elon types went for the nuclear option, I chose to keep my now-naked account live for a few reasons:

  • I use Resistbot a lot to communicate with my elected representatives;
  • I wasn’t sure if someone else could grab my username if I completely deleted the account; and
  • I don’t know why, but some companies absolutely refuse to provide customer service unless you publicly shame them on social media first.

I’ve settled at CounterSocial for the most part. It feels a lot like Twitter did in the early days. When it was fun.

When CoSo tanks and we’re all waiting to sign back on, it reminds me so much of Twitter in the days of the Fail Whale. Before trolls searching for any and all mentions of Dean Cain’s name showed up in my mentions and accused me of “writing a bullshit.” (You probably had to be there.)

I stand by my joke that Dean Cain’s face caused my cancer though. Also, Dean Cain is a jackass. (Google it. I’m not linking to that crap here.)

Anyway, that’s that. I know I told people to look for updates from me on Twitter, but I’m not doing that now. Sorry, not sorry.

Your options are: Put my blog in your RSS reader, subscribe by email using the sign-up in the sidebar (or below if you’re on a mobile device), stalk my CounterSocial profile, subscribe to my YouTube channel, or just wonder what the hell ever happened to me.

Are you still on Twitter? No judging here, just wondering what y’all are up to. There are as many reasons to stay as there are to leave.

Brain Tumor, Social Media, and WYGB

Brain Tumor, Social Media, and WYGB

Brain Tumor: Today’s visit with my oncologist

“Did you see your results?!” That’s the first thing my oncologist said to me at my appointment this morning. It must be as fantastic to give good news as it is to receive it. Especially if your patient has a brain tumor.

I’m really glad the lymph node stuff isn’t cancer. It wasn’t the most stressful what-if situation I’ve ever faced, but it was up there. Because one of the side-effects of temozolomide (the chemo I’m on) is lymphoma. Cancer patients are always worrying about something, including more cancer.

For now, I’m going back into my holding pattern. Letting my body rest and hoping the Very Angry Lymph Node continues to decrease in size. As my doctor said, it can be removed if it becomes unbearably painful or whatever, but nobody wants another medical procedure for me. Least of all me.

We talked a little bit about my plans to move to be closer to family, and then she told me there really wasn’t any reason to suffer through an MRI right now unless I felt some change in symptoms. Then she’d put an order in for one right away. Though my BP and pulse were kind of high, I was feeling pretty good. My pain is more tolerable, my fatigue is less debilitating, and I’m not as depressed as I was during yet another long, pandemic winter.

Social Media: CounterSocial is better than Twitter

That’s my opinion, and I’m sticking to it. I realize that not everyone will feel the same way. I’m just saying that CounterSocial is my preferred social media site at the moment, offering me a way to atually customize my experience—not just pretend to the way Twitter did.

(I tried so hard to set filters and whatnot on Twitter, but the angry-making stuff still always found me. I just got so tired of being consumed by the algorithm or thrown back into the “Home” timeline without consent. Yes, I will miss people that only Tweet, but sometimes change is necessary. And it is so necessary for me.)

I’ve given myself until May 15 to wrap up loose ends on Twitter, but honestly, I don’t even want to look at it anymore. It’s been yucky there for a while, but the recent turmoil over Elon buying the site has made it an absolute cesspool of a social network. I don’t have energy for that kind of stuff anymore, but even if I did I wouldn’t choose it for myself. See also: Facebook.

Anyway, I’m not deleting my profile, I still think I might want to yell at a customer service account from time to time. I just don’t plan to go there for my microblogging and socializing needs.

CoSo, as it’s lovingly called by its users, has a very GenX vibe at the moment. I fit there so well that I’ve already created a Pro account in the hopes that it will help as the site goes through this awkward growth spurt. (There are no ads. It has to be funded by users, which I’ve found makes them take pride in it and improves the overall experience for everyone–even those who are content to use the free version.)

I am still on Mastadon as well, but don’t find myself logging on there as much as CoSo. If you’d like more details about either, though, let me know. I can probably answer some basic questions.

WYGB: Read it free through May 31

I’ve got my webserial memoir, Who You Gonna Believe, open to the public for the rest of this month if you need to catch up or want to get started. It’s usually a Patreon perk, but every once in a while I open it up for public consumption. This is one of those times. I am hoping to get back to posting new chapters soon. But I’ve said that before. Maybe this time, I can actually do it! If you want to jump straight to the Table of Contents, just dive right in.

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