If It’s Not Lupus

If It’s Not Lupus

If it’s not lupus, I will genuinely be surprised. Yesterday I had another CT scan from my neck to my nethers. And there’s a lot of stuff messed up in there, but the thing that has me guessing SLE (lupus) is that there’s a new nodule on my lung.

Now, the CT report says “suspicious” for malignancy, but it was ordered by an oncologist at a cancer center, and I think we’ve already discussed how when you’re a hammer everything’s a nail. I probably dismissed a lot of relevant symptoms myself because “brain tumor” and “chemo.”

But here I am, trying to be a whole-ass episode of House.

Maybe I should be more concerned about cancer again, but I’m desensitized to cancer scares like a “conservative” American is desensitized to gun violence. I’m honestly more concerned someone is going to suggest another biopsy, and I will break down in tears at the thought of paying for it.

By the way, I am not strong anymore, and I don’t have to be or want to be. This has been going on too damn long for me to absorb any of that nonsense. So if you’re thinking it, keep it to yourself. I might go emotionally all asplody without warning.

I have an appointment next week with a nurse practitioner at the rheumatology place, where no doubt I’ll be giving up some blood. Maybe they’ll know something no one else does.

Oh, and I seem to have inherited my Mom’s diverticulosis of the colon. Not a major concern right now, but still: annoying-guh.

My list of symptoms is too long to list in full, but the most interesting and bothersome to me are: symmetrical sun-induced rashes on my elbow bends and shins, giant lymph nodes, heat sensitivity, random allergies to new things, and the ever-present muscle pain and weakness.

Basically my bones and joints are the only things that don’t hurt. So in the world of crappy autoimmune diagnoses, I don’t think arthritis is likely. I guess that’s something.

The CT report also mentioned something about a misshapen bladder. “See,” I said to Dan. “I told you all this inflammation is taking up needed space! No wonder I have to pee every three minutes!”

I’m more than ready for a(nother) diagnosis. While I appreciate the professionals not wanting to mask any of my symptoms with drugs, I’d probably sacrifice a small child if he was waving around a steroid prescription right now. Think of it like reverse ‘roid rage.

If this is your first visit, a little background: Positive Speckled ANA

I Can Do Anything

I Can Do Anything

I successfully canceled our old cable and internet today so I feel like I can do anything. I even went to the kitchen and got Oreos by myself and went outside today. Look out, world!

This morning I did a quick 10-minute Merlin session to calm myself before taking on AT&T customer service (I was anticipating a struggle but it was fine) and these are the birds that were in our backyard today:

I think these new compression socks I have are helping. In fact they feel so good, I bought some compression sleeves for my arms that are being delivered later today. I will report back after I’ve tried them, naturally.

A large part of my mobility problem is that I don’t feel stable and am anxious about falling every time I get up. I don’t trust my own muscles, and compression helps with that. Plus it relieves pain. A doctor has never said I needed compression gear, but whatever. I’m exhausted and they help.

The weather is beautiful and not too hot, so I got to spend some time outside making vitamin D. I didn’t have to spend it in direct sunlight, though, because we have the canvas roof up on the portable canopy now.

Wednesday morning is my CT scan. I don’t anticipate it’ll be helpful or find anything, but better safe than sorry. Or so I’m told.

The rheumatologist appointment I’m still dreading isn’t until next week. I’m back to my old head games of imagining the best way to present my symptoms and expecting the doctor not to listen. I hate it.

Switching gears because I don’t want to dwell on that: I have a new affiliate partnership with Skillshare, so if that’s something you’ve been thinking about doing, please use my link to sign up. There are all kinds of on-demand courses you can take from drawing to video editing, but you know I’m partial to the Zentangle ones.

Zentangle inspired art tutorial using patterns with a swirl theme being hand drawn and colored with watercolor pencils. Original Zentangle taught by Tracy Anne Wilkinson
Swirls taught by Tracy Anne Wilkinson.

A couple years ago, I completed a Zentangle on YouTube from CZT Tracy Anne Wilkinson, and I noticed that she has Skillshare classes too. If I ever get my grip back and can afford an iPad, I’m going for the Procreate stuff for sure.

Anyway, happy Monday!

How to Pair Devices on Spectrum 2.4 GHz WiFi

How to Pair Devices on Spectrum 2.4 GHz WiFi

We recently switched to Spectrum WiFi wireless Internet from another provider and learned the hard way how to separate the 2.4 GHz and 5 GHz WiFi frequency. It seemed like 5GHz was the only option. It’s easy to switch, it turns out. Here’s how to pair devices on Spectrum 2.4 GHz WiFi.

Enable 2.4 GHz with MySpectrum

  1. To set up smart devices, on the MySpectrum app or website go to the Services menu.
  2. Scroll until you see the Explore section.
  3. Tap Setup Smart Devices on 2.4 GHz to enable the 2.4GHz channel on your router.

Why Your Smart Device Won’t Connect to 5GHz Router

Most smart devices don’t contain the wireless radio for a 5GHz connection, but most (newer) WiFi routers default to it. I’m not an expert on why it has to be like that; it just is. If you’re having a hard time connecting, knowing how to split WiFi into 2.4 and 5 on Spectrum might solve your problem.

Most routers can switch to 2.4 GHz easily. The issue, in our case, with switching from AT&T to Spectrum internet, was figuring out how to get the router to use the 2.4GHz band instead of the 5 GHz band.

Troubleshooting Smart Device Setup on WiFi

With a couple of devices we had to go to the owner’s manual to reset the WiFi pairing because the device was still looking for the old WiFi. Just a heads up.

Bottom line is I spent way too much time (because Google sucks these days) finding out scores of people had the same problem as me. They were all futilely asking for help in support forums and on reddit, when the answer was right there the whole dang time.

I guess you have to Google the perfect question for actual answers.

Not even the official Spectrum Support forum replies mentioned how easy the fix was, which was mildly infuriating. Most of the responses I read were like “sometimes it happens.”

Anyway, now our cats Izzy and Ollie can eat from their automatic feeder at 4 a.m. while leaving us alone, and our robot vacuum can once again suck it.

You might run into this issue setting up everything from smart ovens and lights to doorbells and garage door openers.

Not everything needs to be on WiFi, but some things do. Especially if you’re disabled. I hope this is helpful for someone, though I don’t honestly know if I can get Google to send people here, so tell your friends.

Are All Rheumatologists from Hell?

Are All Rheumatologists from Hell?

Rheumatology rant incoming. I didn’t sleep last night, and there are going to be f-bombs in the paragraphs that follow. If you stick around for this post, welcome. If you’re not in the mood, you might want to look up cat videos or something on another site, because I’m having a PTSD bout, and I am pissed. 100%. From concentrate.

First, a refresher. I was referred to a rheumatologist by my oncologist over this whole swollen lymph node thing. I have had a second (after some years) positive, speckled ANA, and a host of unexplained symptoms. I’ve been through three biopsies, had a fuckton of imaging done, and am medically bankrupt AGAIN.

I can’t drive. I can barely walk. And I am in all-over pain every second of every day. I spend my extremely limited muscle energy going to medical appointments, eating, and making sure I get to the toilet before the magic happens. Yet daily I try to maintain my humor and give people the benefit of the doubt.

Not today, though. Today I unleash my last couple of fucks on this blog. Those bitches want OUT.

Because I was a new patient to the referred rheumatologist, two appointments were scheduled at the outset: one for the initial consult and one a couple of weeks later to go over lab results.

You may recall that I wasn’t thrilled about going to Missouri for the appointments, was discouraged that I’d pay out the ass for more unhelpful shoulder shrugging, and also my insurance was changing. Nightmares all the way around.

When no one was available to take me to suburban St. Louis and then the car broke down, I wasn’t exactly upset about having to cancel those two appointments. That much is true. But I didn’t dawdle about letting the office know I couldn’t make it.

I went back to my oncologist for my routine follow-up in May. He asked me why I didn’t go to rheumatology (or infectious disease, but that’s not relevant to this rant). I didn’t have energy to go over the sordid details with him, so I went with an honest summation: I needed a break.

Dr. Oncologist understood but urged me to at least see a rheumatologist because of the ANA test results. I was reluctant because fucking Missouri, man. But I agreed.

I called rheumatology to reschedule, didn’t get an answer, listened to the “you will be charged $50 for cancelling without giving 24-hours notice message” and didn’t leave a smart-ass “even if I’m in the ER?” voicemail. I did, however, leave my name and number.

Crickets from them for over a week.

I called again and got through today, and the woman who scheduled me said “You’ve cancelled twice. One more cancellation and we won’t reschedule.”

I held my tongue. I’m sure she didn’t make the policy, and I don’t swear at messengers.

But I’m going to guess she doesn’t read this blog and ask: What the FUCKING fuck kind of fucking policy is that for any fucking doctor to have?

I’m triggered over this because I’ve never had a positive or medically enlightening experience with a rheumatologist. First, there was the Rheumatologist from Hell who misdiagnosed me with fibromyalgia. Then there was the rheumatologist after him who “didn’t treat fibromyalgia patients.”

And now this fucking guy.

I had brain cancer the whole time rheumatologists 1 and 2 billed me for nothing and did nothing, respectively. I still have it now.

So, yeah, not in a terribly accommodating mood at the moment. And I could explain that I have fucking brain cancer. That I can’t drive. That I was recovering from a surgical biopsy with a host of other miserable symptoms. But I shouldn’t fucking have to. I should be treated like a human being and so should anyone else, cancer or not.

Fuck these assholes and their assumption that everyone cancels because they don’t appreciate a doctor’s time.

There are certainly things I don’t appreciate, but that isn’t fucking one of them.

Am I potentially making a bad situation worse by blogging about this publicly with a unique last name and rare diagnosis? Yes.

Do I care? Fuck no I don’t.

End rheumatology rant.

Dave’s Not Here, Man

Dave’s Not Here, Man

I mentioned a couple of posts ago that I had been approached by the marketers for—I’ll just say it now—Cheech & Chong to do a review of their hemp CBD Cruise Chews. The way it was supposed to work is I’d try the stuff, give my opinion, and then I’d drop an affiliate coupon link for anyone else who wanted to give the Cruise Chews a try, but apparently Dave’s not here, man.

After a simple back-and-forth e-mail exchange, I was asked to sign up with an affiliate marketing site I’d never heard of. (I’m not suggesting it isn’t a legit site; it has major brands. It was just new to me.)

I let the person who contacted me know I’d signed up.

Crickets.

A couple of days later, I was contacted by someone else about reviewing some muesli. The name was different, but I got the same form email about doing the review. I responded with my own form e-mail reply and was again asked to sign up with the affiliate site.

Again, that’s how these things go. I’m not implying bad faith.

I told the second marketer that I was already signed up.

Crickets.

Thinking maybe I needed to do more, I applied to both affiliate campaigns, mentioning the names and e-mails I’d exchanged. A new person responding on the site asked me how I intended to promote the Cruise Chews.

“Dude,” I thought. “This is a colossal waste of my time.” I didn’t bother to reply.

I’m not suggesting anything other than: this is a poor way to run a campaign, especially if you’re approaching someone sick with cancer and unspecified autoimmune crap. I just wanted to let you readers know I don’t think this is happening. Dave’s not here, man.

Maybe you’d like to make some cannabutter instead. Or try a competitor’s offer? I still have to pay bills.

25% OFF THCa Flower with Code: THCA25
Sir, this is a Wendy’s

Sir, this is a Wendy’s

When I was on dexamethasone—the mother of all steroids—during cancer treatment, I had a Wendy’s vanilla Frosty after every treatment. But today the “Sir, this is a Wendy’s” punchline hurts different.

Back then I’d wrap up chemo and radiation in the morning and Dan would take me to get lunch. The lunch venue varied. Sometimes Chinese, sometimes burgers, sometimes waffles, sometimes chicken, but after every meal I’d ask Dan if he’d take me to get a Frosty, and he never once waivered. Despite the 40 extra pounds, bloat, and moonface I was sporting as a result of the meds.

Cancer isn’t always an impetus to weight loss, by the way. I learned that first-hand.

Steroids made me ravenously hungry. I would wake up in the middle of the night because my stomach was proverbially gnawing on my backbone. If you think Prednisone is bad for the waistline—whoooboy. Dex is going to wreck you.

On dex, I’d eat an entire pound of cashews as a snack, and then immediately eye the cupboards for my meal. I’d eat a whole package of cookies, and on the penultimate one ask what was for dinner. I couldn’t tell when I should stop eating until my stomach ached from being stretched taut with food.

So there was always room for a cold dessert on my burning mouth after Daily Treatment Lunchâ„¢. When I finished my large Wendy’s Frosty, I’d feel the pain of too-fullness and know it was time to go home and take a nap. I felt a lot of different kinds of pain then, as I do now, but Frosty pain was the only comfort pain.

Singing now: Hurts so good. C’mon, baby, make it hurt so good.

There’s a special place in my heart (and stomach) for the vanilla Frosty, even seven years later.

So naturally, that’s the flavor they replace with their far less superior seasonal flavors like peppermint, dreamsicle and strawberry. I have dutifully tried them all, but they taste fake, like the artificial flavorings they no doubt use.

I know, I know. Chocolate is the original, and it’s fine. However, if you’re weird like me, vanilla tastes otherworldly good (even the artificial stuff) and you prefer it.

I’m getting off track. The whole reason I started writing this post is because Dan wanted Wendy’s for breakfast this morning. So I ordered myself a vanilla Frosty coldbrew. Naturally our Dasher called, and as if on cue he reminded me, “Sir, this is a Wendy’s.” They have machines for two flavors, a seasonal Frosty right now, and I’m the only weirdo this side of the Mississippi who wants vanilla.

Curses!

So I got chocolate because I was pretty sure I didn’t want a dreamsicle flavored iced coffee.

[Insert barf emoji here. Please excuse me while I dry heave for a second.]

The chocolate coldbrew was delicious, though I’m pretty sure I’ll delight in any reasonable combination of caffeine, sugar, and ice right now. But it all has me wondering how much more I’d like the beverage if I could get vanilla.

Something Came Over Me

Something Came Over Me

Something came over me yesterday. At first I thought it was allergies, but in the early evening I started running a low-grade fever. So, I don’t know. Flonase didn’t really touch it, so I went with Zyrtec—the nuclear option. I never know whether the medicine in that stuff works or I just sleep hard and forget to feel miserable.

In an effort to escape the Zyrtec fog this morning, I ordered us all breakfast from McDonald’s. The latte packs a nice little punch of caffeine. Might find out it’s too much when I try sleeping tonight, but that’s a problem for Future Emily. I live in the present.

Got a new bird this morning, because I don’t learn from my past allergy mistakes (see above) and keep the outside, you know, out. side.

Ovenbirds are new to me, and I had to look up why they’re called that. Here’s what All About Birds has to say:

“The Ovenbird gets its name from its covered nest. The dome and side entrance make it resemble a Dutch oven. The Ovenbird female weaves the cup, side entrance, and roof of her domed nest from the inside as a single, integrated piece. Then she drops leaves and twigs on top to hide it.”

They’re rare for this part of the world—a type of warbler here to procreate for the season—and too stinkin’ cute. Other new finds this week include: a Swainson’s Thrush and a Summer Tanager. I got my first Oriole of the season too, but I think I accidentally deleted the proof. Oops.

Abrupt subject change.

It’s June 1, so that means there’s another chapter of WYGB available on Substack. I already have 13 subscribers and more views than just leaving it here on my website, so I think re-posting the content there was a good decision.

Something came over me, though, and I reordered it. Putting what was previously Chapter 4 first. It seemed “Triggered”—the original first chapter—was kind of dull compared to “Liar, Liar.”

I’m not sure the switch works without edits, but I don’t have the ability to read it at the moment let alone make any potential changes. Luckily, this is the internet, and I have faith someone will let me know if it sucks.

If you like reading stuff via Substack or you just want to support the cause, you can sign up free here:

Still trying to pay off medical debt too, so have another GoFundMe link to share with your friends.

*crams link down your throat*

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