Positive Speckled ANA

Positive Speckled ANA

The results of the antinuclear antibody (ANA) test are in! They are: positive, speckled, high and with a ratio of 1:640.

Now, to temper my enthusiasm a little, I should probably remind myself there is an entire laundry list of potential diagnoses to consider—from drug induced lupus (I do suspect temozolomide, one of my chemos, screwed me up) to hepatitis to Sjogrens and even…fibromyalgia.

[Blinks annoyedly into camera.]

So I don’t have answers, per se, but I do have reason to believe we’re finally getting somewhere. After years. Again.

For comparison, in 2015’s ANA test, I only had a ratio of 1:160. Then in 2017, while hospitalized for the brain tumor and on the mother-of-all steroids, I tested negative. The change is noticeable and significant. (Thank God for MyChart’s search function!)

It’s not clear to me yet what’s going on, but fuck if I don’t feel a little bit hopeful right now. Like maybe I’ll be able to take a shower again without wondering if I’m living in my own tiny post-apocalyptic hell.

Dan is cautious of me getting too convinced of anything too soon, and honestly that’s kind of a buzzkill. But I’m not unreasonable. I get it. 

It doesn’t stop me from saying I have every Sjogrens symptom known to man, but I get it.

I just want so desperately to have a reason to hope I can spend some time not in bed, not miserable, not so tired and weak I have to hobble to the toilet. I’m sick of strategically leaving doors open to conserve energy.

Yes, the batteries are that low.

And if I could just have a steroid, please, instead of worrying it will mask something important—I promise I’ll be good! And not complain about the weight I put back on because everything tastes marvelous again.

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Simon & Garfunkel, 30-ish Years Later

Simon & Garfunkel, 30-ish Years Later

When I was about 10? Maybe? I used to play Where in the World is Carmen San Diego on our family’s IBM. The den’s dark wooden shutters would be closed, and I’d put on headphones and listen to Simon and Garfunkel while tracking down a villain with a punny name, a copy of Fodor’s close by just in case I needed help with a clue.

Those earphones—cans, you might call them—were probably 20 years old. I think Dad got them when he was in the Navy. When I wore them, the painted fabric ear cushions would peel, the black fabric paint tearing off in little pieces and sticking to my sweaty cheeks.

I must’ve looked ridiculous wearing those giant things with the 6-foot-long coil plugged into the 1970-something receiver, sitting on a bookcase with a 6-cd changer, a tape deck, and a reel-to-reel.

I realize only now those were noise cancelling headphones, and I loved them so much because I was alone in my happy place listening to Simon and Garfunkel sing anti-war, anti-The Man poetry with some of the most beautiful harmonies ever recorded.

Dad had a 3-CD set. I want to say it was a collection of all of Simon and Garfunkel’s studio albums, but I could be wrong. What I do remember is the CD case was hunter green and the cover was a booklet with lyrics to everything.

In those days, I thought the whole world had learned something about war and authoritarianism and every adult was a hippie and went to Woodstock. I didn’t know I was naive. That even my own parents were squares, actually. 

I didn’t know that I was the only fourth-grader on the planet who had not only heard S&G’s deepest cuts but could sing them by heart.

Anyway, Dan talked me into buying noise cancelling earbuds from Amazon this week. We needed new filters for the cat bubbler* and they had the earbuds on sale.

I put the earbuds in and played “Sparrow.”

For the first time in 30 years, I heard everything. I thought I couldn’t enjoy music in that way anymore. Not since the brain tumor, but it turns out I just wasn’t listening the way I needed to. I teared up.

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*”Bubbler” is what folks from Milwaukee call a drinking fountain. I guess now I do too.

Medicaid Cuts

Medicaid Cuts

I’m going to preface this post on Medicaid cuts by saying this: if you don’t get it, that’s not my problem. I don’t have the energy to help you understand why this matters on a larger, political scale. If you offer me worthless advice in the comments, I will reply with merciless snark.

Dan was kicked off Medicaid after 6 years, thanks to recent Medicaid cuts. His current health insurance ends at the end of the month. All because I make $200 more per month than is allowed under new rules. 

The rules don’t care that the annual price of one of his prescriptions is more than I make the whole year—far exceeding the “extra” $2,400 a year the metric says I make now. Or that the Patreon and YouTube income I report are not guaranteed. Or that I can’t afford my medical bills even with those supplemental sources. Or that Dan gets paid nothing to be my rock while he deals with his own chronic pain.

The rules do, however, mandate that we can’t save money for when something like this inevitably happens.

If my brain cancer, medical anxiety, disability, and mystery illness weren’t enough, now I get to worry AGAIN about the health care of my emotional support human. The man who literally keeps me fed and watered and scrapes me up off the floor when I fall out of bed.

So, yeah. I’m honking pissed again.

Making anyone deal with these things when there are other options is inhumane. Making the sick and disabled navigate this hellscape—repeatedly—is supervillain levels of evil. Even convicted sadistic fuckwads would think twice about doing this to other humans.

For me to get any kind of better or merely acclimate to symptoms of my relatively new and undiagnosed health problems, I require stability. 

This ain’t fucking it.

Lymph Node Biopsy: Third Time’s a Charm Bracelet

Lymph Node Biopsy: Third Time’s a Charm Bracelet

Friday morning they cut out one of my lymph nodes (my third ‘node biopsy but first excisional one) and shipped it off to a lab somewhere for examination. I should have the results of the latest lymph node biopsy within two weeks.

In the meantime, I’m feeling pretty alright. I was prescribed ibuprofen and a few oxycodone—which I wasn’t expecting—for the pain.

The procedure was done under sedation. So the last 36 hours, I’ve been feeling cozy as the anesthesia wears off and my systems come back online. Only a little breakthrough pain between doses. 

Oh, and a lot of farting. My colon’s like, “Yay! We’re functioning again!”

The oxycodone makes me very drowsy, so I’ve been getting great sleep. In fact, last night was probably the best sleep I’ve had in 7 years. (I’m almost exactly 7 years out from my last surgery. You know, the brain one.)

Also, I realized something while peeing so they’d release me from the hospital: I feel more secure on a regular walker. So I just bought a used one of those puppies on Amazon for $22. That’s a freaking bargain! (I earned $18 in commissions this month, so it’s like I got it for $4. Thank you, you lovely people. I told you clicks help!)

If you’ve been around for a while, you know I did have the regular kind of walker after the 2017 craniotomy, but decided I needed the Rollator style with seat and then donated the other. (Dan has graciously not said ‘I told you so.’ Yet.)

The thing about the 4-wheeled walker variety? Good for sitting when you’re fatigued, but you need confidence that they won’t roll away from you. I don’t have a lot of that right now, and so I grip the brakes until my knuckles, wrists, and elbows are white. Which pairs nicely with my anxiety muscle aches. Too nicely. Both styles are great for different reasons, and I need both for different situations.

Anyway, did you know they’ve got these cute new charms for hospital bracelets now? Once a fall risk, always a fall risk I guess.

While going over the standard pre-op questions with the anesthesiologist, he was like “You still have the tumor?”

I was like, “Yeah. It’s a whole thing.”

Basically it’s in a spot no one was comfortable going too gonzo at with a knife. 

But the tumor was a rare enough tumor, they were eager to put a few cells on ice. They sold me on the research idea by also explaining they could treat it more confidently if they knew what specific mutation they were dealing with. So a neurosurgeon did a little scrape-y scrape.

You wouldn’t believe how frequently I have to explain that to non-neurooncologists. The only thing I repeat more is how to pronounce my last name.

But I digress. (That’s how you know it’s really me writing this post.) 

The lymph node was taken from my left groin. A spot not discussed during consults but the very location I dreamed about a few nights ago. Could be a coincidence, but I think I’m just really in tune with my body out of sheer necessity.

Anyway, I’m going to relax while I can. I’ll hit you all up for more clicks when the bills for this shit arrive.

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It’s Still There

It’s Still There

One of the things I’ve heard over the years and have been reminded of recently during guided meditation is that sometimes the sun is obscured by clouds and though I can’t see it, I can find comfort in knowing it’s still there.

Well, it’s been raining here for days, and I’m starting to have my doubts the sun is real.

Just kidding. I know it’s still there, but I’ve gotta pop some Vitamin D3 anyway.

I’m approaching the seventh anniversary of my brain cancer diagnosis, which, as you might imagine, has me feeling some ways. I’ve been thinking a lot about my road to diagnosis, which led me to revisit this post about how to get your doctor to listen.

Hey, I just realized something: like the sun, my brain tumor is still there.

I re-read that post I wrote for the first time in a while and didn’t find it a trigger for my anxiety. Maybe that means the meditation is helping. I say that because once upon a time just remembering that rheumatologist’s name would make me want to key the word “asshole” into his car.

Growth.

Anyway, one week until my excisional lymph node biopsy. I only have $600 in outstanding bills so far. This round of undiagnosed whatever is a lot more affordable than brain surgery. 

I still can’t pay for it on SSDI, but if I make it another 7 years, whatever collection agency buys the debt might give up.

America. Am I right?

Ultimate Guide: Helping a Loved One with Brain Cancer

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From To-Do to Done-Did

From To-Do to Done-Did

Today, Super Bowl Sunday, I didn’t get much of anything done. I was awake until 4:00 a.m. and spent a nice chunk of my afternoon napping. Yesterday, though, that’s when I switched a few list items from To-Do to Done-Did. I:

  • Transferred a balance I was carrying on one credit card to another with a lower interest rate.
  • Ordered a camera mount that works with my new set up at the new place.
  • Researched getting a monitor riser for attaching the camera mount clamp to my desk. (I ultimately decided to hold off and try something homemade—a.k.a. cheap—first.)
  • Fixed my email configuration so that I can send from my emilysuess.com addy again.
  • Ordered Project Pack 20 from Zentangle HQ. The videos from HQ won’t be out until next month, but I had the money now. (If you know, you know.)
  • Did some extremely light exercise because my cholesterol results are in, and yikes! y’all.
  • Washed AND folded a load of laundry.

I have a tendency to downplay my accomplishments by comparing what I can do now with what I could do before brain cancer. That’s not really fair. So I’m going to stop that nonsense and remember that I can still do things, still live.

And just like everything else, I’ll remember better if I write, or type, it out here.

For instance, the other morning I was scooping poop out of the litter box like it was nothing. And I stopped for a second after flushing the toilet and thought to myself, “Holy crap! (Ha!) Three months ago getting this done was an ordeal. Now it’s just part of my day!”

I’m getting a little better at climbing stairs too. I still hold the railing with both hands and yank myself upwards like I’m practicing for a tug-of-war tournament. But the more I get the long-term effects of chemo out of my system, the more I will be able to do—and the better I will be able to do it.

Fatigue and pain are my two biggest complaints and they are so closely connected, it’s hard to know what, if anything, will help. Well, after a little more time off methylphenidate, I’m feeling like my pain is still lessening.

Tomorrow the housekeeping crew is coming, and I am freaking thrilled. I told Dan and my mom that I would bake something on those days (every other Monday) because the kitchen counters will be distraction-free. I need the clarity to follow written instructions. If there’s a fork on the counter, it’s like turning the lights off at a night baseball game in my brain.

Turns out having brain cells irradiated and taking chemo that knows its way past the blood-brain barrier can lead to executive dysfunction. Go figure!

Are you going to eat that?

Are you going to eat that?

Judging by the intensity of my cravings today, I’m running headlong into another mig— By the way, are you going to eat that last brownie?

(Some have hypothesized that cravings are part of prodrome, not a trigger for migraine headaches. And, you know, let’s just go with that because I’m not about to blame myself for lacking self control when it comes to that pan of brownies in the kitchen.)

So I figured I should do a quick rundown of what’s happening before I feel even less like writing an update. There’s some pretty migraine-ish weather in the forecast, so, hatched egg or not, I’m counting this damn chicken.

Most of the time between my last post and now was terrible, truth be told. The only things fueling me were sensory overload and PTSD. I wasn’t even aware of my sorry condition until things relented and suddenly my internal dialogue went from “everything hurts and I’m dying” to “still not dead, assholes!”

A few things helped break the spell: Someone on staff at my oncologist’s office said the word “stable” to me on Tuesday, I have hired cleaning help for the first time ever, and I am listening to music again.

Although they’re still awaiting an official July 2022 image comparison from a radiologist at St. Elizabeth’s, the written reports don’t indicate any significant changes in my brain tumor. That means I can continue not taking Temodar for the immediate future, and sweet cheezus is that ever a relief. I’ll have another MRI in a few months as they continue to monitor stuff.

Lather. Rinse. Repeat.

Mom helped me set up an estimate with a local housekeeper, and she and another member of her crew came out for the first time this week. When I saw the place after, Dan and I kept swapping excited relief.

“They got the fingerprints off the microwave!”

“They vacuumed the cat scratcher!”

“They made Boomer’s bed!”

“Holy shit, they cleaned Boomer’s nose prints off the patio door!”

I have been trying not to drown for almost a decade now. I can no longer fathom how much two abled people can accomplish in an hour. If I didn’t have vague memories of life before cancer, I’d call what happened Tuesday a blessed miracle right up there with virgin birth and tumor-less MRIs.

During a meltdown a few days ago, I bought a cheap pair of headphones from Amazon. (Although I have a set of gamer cans that work fine, they’re too heavy to put on when stuff hurts.) And I told myself I wasn’t going to do anything but listen to music until my crisis time passed.

Coincidentally, if “Remember Us This Way” had been my first audio encounter instead of “Poker Face”, I’d have been a Lady Gaga fan ages ago.

Anyway, I spent days with my headphones on listening to everything from Fleetwood Mac to The Mavericks. (I don’t know Spanish, but en Españolthis track in particular—is wonderful.) I hadn’t done so much music listening since my divorce, because I thought sounds hurt me post brain surgery. It turns out, however, my problem is with multiple senses and overstimulation. If I close my eyes and lie prone, I can listen without wanting to stab everything around me.

In summation, I’m okay but bracing for some intensified pain. Send Kinder Buenos.

MRI #23 and Other Fun Stuff

MRI #23 and Other Fun Stuff

I was going to write a post on New Year’s Day, but, well, ouch. If the weather won’t make up its mind, I’m inevitably in pain until my body adjusts. Not that my body has adjusted to any of this back-and-forth, up-and-down, precipitating-but-not chaos. I’m typing out of spite.

I’m grumpy today. I just woke up, and I am not a morning person. My amazingly comfortable bed isn’t comfortable anymore. I could go on, but I don’t feel like it.

Let’s do this in chronological order. As of last week, the house in Urbana is sold, and I only have a few bills to pay off before there’s nothing nagging at me there. The closing check came, and now I’m waiting for my bank to let me have the money I deposited so I can pay those debts and hand a check over to Mom.

I thought I’d get to stop thinking about money, but I guess that only comes with death. Something to look forward to maybe. (I’m in a mood. If you don’t appreciate morbid humor yet, I highly recommend getting brain cancer in your mid 30s.)

Anyway…

After the closing came my NYE MRI in a mobile unit in the back parking lot of St. Elizabeth’s Hospital. My first (and worst MRI) was in a mobile unit too. In Danville that time. This time there was no music to strain to hear over the magnetic screeching, and somehow the time passed quickly.

Do songs make the scan feel longer?

The longest (perceived) part of the MRI was the part a little over halfway through where the rad tech tried to get my IV going for the contrast dye. My veins weren’t exactly cooperative.

My results are back on that MRI already, but the radiologist’s report was noncommittal because the previous MRI wasn’t available for comparison. So basically it just says, “Hi. You still have a tumor on you brain stem.” Which literally everyone already knew.

Don’t worry, it wasn’t all for naught. I still had to deep-breathe my way through reading the report, because: PTSD. I went to bed at 11:30 on December 31, 2022.

Next on the timeline was New Year’s Day. We ate cheese and crackers. I was planning on writing a blog post and doing a Zentangle video to start 2023, but I didn’t get around to either. Didn’t feel like it. My clothes are tight and cutting into me even though my weight hasn’t changed. My ears are ringing and everything hurts. But I can’t do anything about the weather, so…

Dan and I just recently wrapped up another rewatch of all seven seasons of The West Wing. Then I listened to Rachel Maddow’s Ultra podcast. (It’s good and less than 10 episodes.) I found the podcast gave me a little hope that maybe we aren’t doomed, and The West Wing had me like “this pie-in-the-sky crap no longer holds up.”

I mean, we all know the Chief of Staff wouldn’t just testify because Congress subpoenaed him.

Looking at you Mark Fucking Meadows.

Another very party-over-country thing is happening now: Republicans are turning the House into the same shitshow of do-nothingness the Senate was when they had the majority there. And, you know, the more I watch this ass-hattery unfold, the less frustrated I am with Republican politicians and the more frustrated I get with people who are still voting for these absolutely daft, self-serving, nihilist turds.

Conservative congress members say that government doesn’t work. Then they break it for shits and giggles and take home $174k a year.

Don’t get me wrong, I had a good belly laugh at Kevin McCarthy’s expense the first six times he lost to the likes of the Freedom caucus.

Coup-cus?

But now it just looks like the Republicans are quiet quitting in front of the C-SPAN cameras. Self-cancelling culture and infighting within the party of personal responsibility. No one wants to work anymore. Am I right?

My New Primary Doctor

My New Primary Doctor

Let’s start with the big news: I have a new primary doctor. More importantly, I like her. Which, if you’ve been reading here a while, you know isn’t an insignificant thing. I was a little daunted thinking about this task just after we moved here, but I put what I’ve learned as a professional patient to good use in selecting a primary care physician (PCP).

Basically, there are four things I look at now when I’m hunting for a new doctor here in the US:

Screenshot Text: This doctor has been teaming up with insurance companies since at least 2009 to get super-rich insurance companies off the hook for paying cancer patients the disability benefits they deserve. It's pretty disturbing. Recommend researching him before you choose him to be your treating physician.

DO over MD: There’s just something more humane about the way I’ve been treated by DOs. I’m not saying that all MDs are terrible and myopic—far from it. But I’ve never been treated like crap by a DO yet. So I figure why mess with what works.

Woman: It has historically been helpful for me to receive care from women. I’m not saying that all male doctors are terrible either, but my experience has been telling. Percentage-wise? Dudes are way more likely to be arrogant jerks. And arrogance gets in the way of my getting good care. Arrogance literally traumatized me. Not letting that happen again if I can help it.

Insurance: I’m on Medicare due to disability, and not every doctor wants to deal with that. I always check before I schedule.

Ratings and Reviews: Most doctors these days have been rated by patients, either on Google or Healthgrades or, you know, somewhere. I read those reviews. All of them. (Coincidentally, I just received an email this morning telling me people found my review of Dr. Lee Hartner helpful. Suck an egg, Hartner. You absolute ass.

Yesterday’s encounter went really well because one of the things my new doctor said was something like, “I don’t know a whole lot about brain cancer.”

Music to my ears, kids. I immediately knew I was in the right place when she said that. Doctors who admit they don’t know everything are magical. Like unicorns. I told her that was good, and maybe we’d both learn something.

“Also,” I said, “I have, uh, some trauma from a doctor who thought he knew everything and I knew nothing. So my brain tumor was mis- or undiagnosed for a couple of years. I’m going to be a little anxious every time I’m here.” My voice got a little quivery and I could feel a few tears bubbling. I was tired and trying to stifle the medical PTSD episode that wanted desperately to be let out and recognized. I didn’t cry, but I came really close.

Anyway, I told her about my extreme sensitivity to meds, how doctors always want to prescribe me medicine by weight and it always ends badly for me and she said something like, “I get it. I’m the same way.”

So I found a new primary doctor in one try. That’s nothing short of amazing.

Not Gonna Sugar Coat It

Not Gonna Sugar Coat It

Things kind of suck right now. I don’t want to list all the reasons why, so you either have to take my word that it’s worse than I let on or think me a drama queen with a penchant for vague-blogging. Honestly, I don’t care which it is. What I will say is that I have to make a trip back to the house I was hoping to have been done with and the New Digs only have one working sink–a wash tub–in the laundry room. I can’t tell if things are still hard because I set my hopes too high, or if things are genuinely hard. In the interest of giving myself the benefit of the doubt, however, I’m just going to say things are still as hard as they were, just in different ways.

The financial pressure that I had hoped would ease has not yet, and it’s impossible for me not to think about money constantly. Maybe once the house in Urbana sells? Maybe once we have a functioning kitchen? I don’t know. There are things we need but can’t afford and there are things we don’t need that I’m being pressured to bring back here. I love Dan. He knows this. He also knows that his refusal to part with material things makes my life infinitely harder because I’ve said so many, many times. So instead of dying mad about it, I’m going to type it here: His stuff burdens ME. Also my Mom is—and I say this lovingly—very particular when it comes to housekeeping . And we are not.

Fuck it. Let’s just write this thing.

It’s not that I wouldn’t like to have a tidy house all the time, it’s that two disabled people physically CANNOT. And Chad, our robot vacuum won’t run here. I contacted support about the correct app for the Neabot not being in the Google Play Store any longer and received a reply the next day saying to download a different app that, as it turns out, is also not in the app store. Call me a pessimist, but if customer support doesn’t know what apps they have published, I think we’re going to have to buy a new robot vacuum. So while I was previously very happy to have Chad and would have posted a link to his Amazon page, I refuse to recommend him now.

And leaving out affiliate links is no small thing for me either, because we are fucking broke. Again. No, we’re not in danger of losing the roof over our heads or going hungry at least, and I want to make that clear. But I have to find doctors and make appointments, and try to be presentable when plumbers and cleaners and electricians get scheduled. There’s no room for “panic about money again” in my datebook.

I need a haircut and to feel like I don’t wake up every morning with two different sets of eggshells at my feet. I need the thermostat to show up on my phone or the weather to stabilize so I don’t have to fucking get up to change it. And I can’t let any of that shit go very easily because I’m not just money broke, I’m energy broke. I’m not saying any of this to get help either, because saying thank you is also a fucking burden.

Again, I’m not always this cranky. But stress has reversed my chemopause, and my words are the sharpest thing on me right now. Speaking of chemo, other people want me to be taking it right now. Fuck other people.

I’m overwhelmed. People would help—have helped—but I can’t even brain hard enough to figure out what else to ask for. I’m shutting down. Not because I’m stubborn, but because I have already used up my spoons for the first and second quarters of 2023.

Earlier this week Mom said something to me about how we shouldn’t really have the pets, which hurt. I told her flatly that we got the pets before I was diagnosed suggesting the ever-popular excuse “Nobody predicted any of this in 2015.” She nodded in agreement, but it would be helpful if I wasn’t constantly defending my every fucking life choice all the goddamn time.

I’m trying not to let stuff get me down, but being in the middle of every unspoken conflict and trying to keep the peace is not anything I have the capacity to do right now. I deflect what I can, but I end up absorbing most of it. Which is probably why I’m muggle sick, sporting a cold sore, and perpetually exhausted. My Mom is in her seventies and can run circles around both of us. She has done so much, but the one thing she can’t do is empathize. It’s not a shortcoming, no one knows what anyone else is experiencing at a given moment, but it’s also not something I can handle well.

Until our kitchen and bathroom countertops are installed, we have zero use of our kitchen, and we can’t really unpack anything. We’re living out of boxes in various rooms and at least a dozen times a day one or the other of us is asking “Have you seen X?” We had to leave our refrigerator at the old house and are borrowing a dorm fridge for the time being. Mom is going to get a new fridge and let us use her old one, but Dan wants a French door fridge like we had and…Mom is getting a French door fridge. It’s her right to buy what she wants. And it’s Dan’s right to feel bitter about everything. And it’s my right to fucking scream until I’m blue in the face.

AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAGGGGGGGGGGGGGGGGGGGGGGGGHHHHHHHHHHHHHHHHHHHHHH

If you pray or send good vibes into the universe or whatever, please put in an ask that we actually get our kitchen and bathroom countertops on Tuesday as promised by the installers. At least once that’s done we can put stuff in cabinets and get rid of more boxes. I actually have a housewarming list on Amazon, but I’m afraid to post a link to it right now because we don’t have anywhere to put stuff people might want to give us. If you want to help, maybe watch a video on my YouTube channel instead, because I’m probably not going to be able to put up a new video for a while longer and I don’t want the algorithm to think no one cares anymore.

On a more positive note, we got our first bit of feedback on the sale of the Urbana house, and it was all positive. Despite our inability to fix cosmetic things, the structure is in excellent shape. And the feedback we got on the price we’re asking is “just right.” The house was listed Monday and we’ve already had 4 showings. That paired with the fact that inventory is so low in Urbana have me hopeful that it will sell soon and with much less fuss than when I tried selling off that hunk of junk condo I had to lawyer my ex-husband out of.

There’s more, if you can believe it, but I’m tired and typing hurts.

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