Rheumatology Appointment

Rheumatology Appointment

I fully intend to get to the rheumatology appointment. But first I want to write about how I can still write, and what a joy that is.

The last time I had a job (conventionally—I don’t mean to imply that chronic illness and disability aren’t vacation-less, salary-less jobs) I was a technical writer for Wolfram. One of the things I did there was draft online help articles for the company’s software, Mathematica.

Well, today I woke up to a thankful comment on my recent, totally out of place help article here on this site. The one where I explain how to pair smart devices on Spectrum 2.4 GHz Wi-Fi. And it was so validating! Not only does it mean I can still communicate helpful things, but I also probably was good at my job back then!

This is a ridiculously big deal to me. I know I can’t do tech writing gainfully these days, but that I can do it at all? That some part of the old me still lurks in here somewhere? It’s important to me, turns out. That comment made my Friday.

But moving on to my much-dreaded doctor’s appointment. The TL;DR for those of you who care (but not that much) is: I gave up a lot of blood, and I go back to rheumatology in a couple of weeks for the results.

The nurse practitioner (NP) recommended I still see infectious disease, but I can only worry about one thing at a time right now. Anyway, the fact that she mentioned infectious disease makes me think my symptoms don’t make any diagnosis seem too obvious.

She did say that my ANA results were a true positive, which is helpful for not having my symptoms dismissed right out of the gate.

My issue all those years ago was my 1:160 ANA ratio (or whatever, I might have the number wrong) was too low to be medically relevant. A certain portion of the healthy population also returns those results. Which, one might argue, is why patient symptom reporting should be taken seriously. But that’s an old rant for a shitty doctor and one I don’t feel like thinking about today.

You’re welcome.

Bottom line assessment of the NP and doctor I saw yesterday: caring, professional, smart. The bar for care was low, thanks to my misgivings about the reasonableness of the Missouri legislature, but I would be fine with treatment from either of these two—even here in Illinois.

So, as I said, they took a lot of blood. Somewhere around 6 or 8 vials. (I’m not sure because I didn’t look. I’m usually fine looking, but I knew there was going to be a lot, and I was overheated. So out of an abundance of caution…)

It’s not the most I’ve ever given up, but by comparison my standard chemo draw was 2 vials during treatment.

If phlebotomy is your kink, partner up with a rheumatologist. Follow me for more relationship advice.

All in all, it wasn’t as horrible as I dreamed it would be. But I still can’t have steroids until they know what’s going on. They’d mask any autoimmune findings. I knew this would be their answer, but I had to try. I’m all kinds of desperate. I’d have cried yesterday if I could make tears.

Next rheumatology appointment July 8. Watch this space.

Without a Diagnosis

Without a Diagnosis

Thursday is my next doctor’s appointment. The one at the rheumatologist. And let me tell you, I am desperate for someone to figure out what this is. Without a diagnosis, I’m throwing all the proverbial wet noodles at all the walls to see what sticks. So far, each has made its sloppy, sliding descent into a slimy pile on the floor.

After three days of distention and extremely painful gutflation™, my bout with constipation ended in a most undignified manner. I’d try to make you (and me) chuckle with the details, but I don’t have it in me. Literally and figuratively.

It’s hard not to feel sorry for myself. Not because I enjoy being all “woe is me” but because I don’t know how to help myself deal with this illusive mystery illness. Being pitiful is less of a struggle, and sometimes I choose the path of least resistance.

Oncology assures me the brain tumor hasn’t grown and that I don’t seem to have another form of cancer. So I try different things to ease my symptoms—dietary changes, supplements, exercises—and when they inevitably fail, I blame myself for doing something wrong.

It’s bullshit, but it’s internalized bullshit.

“I feel like I’m always doing something wrong,” I say exasperatedly pouting.

“It’s not your fault,” Dan reminds me. And honestly, third-party exoneration of blame is the only thing making me feel the slightest bit better these days. Eating healthier to be healthier is a total sham. Nothing I try helps for long. I’m always back to abject horror in 36 to 48 hours.

I was in this same place mentally before the MRI found the tumor. When I did the rounds with the rheumatologist, the neurologist, and the gastroenterologist. Two out of three for sure didn’t believe me, and I don’t know about the third. Either he believed me or he was so kind his unbelief was undetectable.

It’s dark and lonely here, today. I’m desperate for steroids, though I don’t have any reason to believe they’ll help for more than a few hours either. All I have in this moment—without a diagnosis—is hope, and there isn’t a lot of it.

Let’s Have Toilet Church

Let’s Have Toilet Church

What I’m about to write will not be for everyone, but me and the people who get it are going to have toilet church this morning. The rest of you are welcome to attend. We dare you to try and understand.

I decided on Monday that it was time to go back on rosuvastatin (generic Crestor). My primary doctor prescribed it last year for my high cholesterol after atorvastatin (generic Lipitor) caused me to hurt like the dickens*.

I’d been eating like a 20 year old, because food was one of those things I couldn’t be too thoughtful about. I frequently used up my brainpower on things like surviving 30-minute rides to harrowing medical procedures and then recovering from the three-day crash that ensued.

Consequently we DoorDashed** a lot. I ordered what I wanted, not what was best for me. Because it was the best I could do at the time.

Not exactly advisable for a forty-something.

Even a healthy one.

So it wasn’t a surprise when I got prescribed cholesterol meds. When the first one caused untenable side effects, my primary physician had me try rosuvastatin.

I’m trying not to make this tale incredibly long for all our sakes, but I went off of it while trying to figure out why my lymph nodes were huge. This week I decided it was time to go back on it because it clearly wasn’t the medicine causing my problems.

However, one of the side effects of rosuvastatin is constipation. (I think we all know where this is going, don’t we?) And in the time I’d been off it, I’d forgotten my doc told me to cut the pills in half because of my drug hypersensitivity. So I took twice my recommended dose, because: my memory. I also recently upped my fiber intake because: diverticulosis.

I repent.

Hi, I have IBS, if you’re new here. I am either constipated or… the extreme opposite of constipated. As I have told anyone who’ll listen to my gastrointestinal woes, I’d rather have diarrhea than be constipated. Though neither extreme is fun, diarrhea is acute. It’s misery for a limited time, followed by almost euphoric relief. When it’s over, clouds part and angels sing.

Constipation, by contrast, is protracted suffering. I hate it. It’s why I never finish post-operative pain meds, sometimes eat Taco Bell medicinally, and frequently shout “Demons, out!” while seated on the toilet.

Well, I think docusate sodium is better for the soul than a communion wafer. And my fiber-undigesting self believes constipation is a little-discussed circle of hell. My Senekot Sin was that I didn’t account for the rosuvastatin, let alone too much rosuvastatin.

God have mercy on my painfully bloated, immotile colon. Forgive it for all the radiating nerve pain it causes, because I sure as shit*** can’t.

* I looked this expression up. Apparently it originated in the 1500s with “dickens” being a substitute for “devil” though present-day me wonders why you couldn’t just say devil. Was it a Voldemort-like situation?

** Use this link for $10 off your first three orders of $15 or more, and I get $20 in credits.

*** Ha! In my dreams.

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!

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.

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*

Vitamin D Insufficiency

Vitamin D Insufficiency

To absolutely no one’s surprise, I’m running on insufficient amounts of vitamin D again. I happened to ask my oncologist if he could order the blood test last time I was in. It was on my list of things to do for my primary doctor, but I’ve been kind of busy being sick.

I guess you know it’s bad because I don’t feel well enough to go to doctor appointments.

Anyway, I have reinstalled the DMinder app on my phone to help me manage my supplements and sunshine. I was doing so well a few years ago. In the summer of 2021, I was up in the 70s, but I have fallen below 30 again. It sucks because I am photosensitive. (I thought this was because of medications, but now maybe something autoimmune is complicating things too.)

My articulating arm that holds my phone while I type broke this week. I got a new one, but it’s too hard to move or I’m too weak or both, so I might update less frequently. I’ve been contorting to make this one work for me, but I think it’s part of the reason my neck and shoulders hurt so much. I’ll get the non-matchy kind again, but it’ll have to wait until next month’s SSDI.

All of that to explain why this blog might be quieter than usual.

While I’m here, might as well post some birds!

The meadowlark might not be for real. I didn’t see it, and those damn starlings and their mimicry. Dan is not really into the photography thing right now, and he’s the only one in this house that can walk without a rollator, so he’s got his hands (and feet) full right now.

To end on a happier note, that Eastern Wood Pewee is one of the cutest things I have ever seen.

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Too Tired for Hope

Too Tired for Hope

I didn’t sleep well last night. Yes, again. I was overthinking the whole lupus-rheumatology thing, even though I promised myself I wouldn’t. So it’s back to moving the compulsive thoughts to the frontal cortex. I’m not feeling anxious, really. Just uselessly spinning the cogs, because I can’t do anything else.

On one hand, I’m tired of wondering what’s wrong, bitter about needing to. And on the other hand, I can barely use a fork because it’s too heavy, and wouldn’t it be nice to know why? Maybe even treat it?

I vacillate between letting myself hope for something better and believing the only thing I can trust is that medical pursuits are colossal wastes of time for me. All this time I should be living while the tumor isn’t growing, and instead I’m stuck in bed. Saving all my energy for getting to the toilet in time.

It’s depressing. And not just a little bit.

I made a document on my phone of all the symptoms I can think of, trying not to be dismissive of anything. If it’s caused by the brain tumor or a long-term side effect of chemo, I need to let the doctors say so. Maybe I’m ignoring something telling, writing it off as insignificant because I don’t know what’s what anymore.

The positive ANA test does point to something. Lupus or Sjogren’s Syndrome or Myasthenia Gravis. But I considered all these things before, years ago. And what showed up was a brain tumor.

When I first met my primary doctor here, she asked me if there was “anything else” after we went over my diagnoses. “Not that that isn’t quite enough,” she added. We laughed, because what else are you going to do?

I’m too tired for hope today. Someone else can do it instead.

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4 New Appointments

4 New Appointments

I started the day with one appointment and ended the day with four new appointments between now and early July.

My oncologist asked if there was any particular reason I didn’t do my infectious disease and rheumatology appointments. I explained that I was too tired, there were too many things going on, and I needed a break.

He understood but encouraged me to see the rheumatologist because of my positive speckled ANA results, and then he mentioned some soft tissue shenanigans and wondered about lupus.

Man, I am not Googling that shit again.

I asked the doctor if there was any rheumatologist he could refer me to in Illinois. I knew the answer. Dan’s been trying to get one for his psoriatic arthritis for a hot minute without luck. But I had to verify.

(For those who haven’t heard: if you’re pregnant in Missouri you can’t get a divorce even if your spouse is abusive. And that’s not even the half of it. Missouri is bass ackwards, and I hate the idea of my money funding that fuckery.)

“Should I send the referral? Are you OK with seeing one in Missouri?”

He held a finger over the mouse, waiting for my answer before he clicked.

“I guess,” I said. “I don’t really want to, but I guess I need to.”

So it’s, MRI, CT, rheumatology and oncology in the next 7 weeks. I’m not sure how that sounds to the able-bodied. But to me it sounds like pure hell. Heat, car rides, labs, tests, insurance, doctors. Ugh.

Brain Freeze

Brain Freeze

My anxiety is up, so I didn’t blog yesterday. It’s disabling like that. Just completely freezes my brain.

What’s got me sleepless and experiencing brain freeze currently? For starters Dan has a doctor’s appointment today, and I’ve been rolling around various topics related to paying the inevitable bill, finding him a new PCP, and getting his meds.

I have a couple of my own appointments on the horizon. The first is sorting out whether I’m going to the infectious disease doctor or not. 

I cancelled the rheumatologist already. I’m just so tired of these meaningless exertions, and I was having trouble getting someone to take me to Missouri. I mean, I don’t want to be there anyway. The fact that no one else does either just makes it easier to say no.

Then my routine oncology appointment will include scheduling an MRI. How is it time for that crap already?

I’m also concerned about making money from this website. I was replacing some Amazon links with Blick.com links (I need Amazon sometimes, but I don’t want to need it) when my mind was like, “wouldn’t it suck if you got this site making just enough to get you kicked off benefits and not enough to live off of?”

Everything about being disabled is stressful. Everything.

And those anxious thoughts preoccupy my brain so that there’s no juice left for executive function. I can’t shower and fold my clothes, let alone make the words make sense. So yesterday was useless to me.

But blogging today must mean I’m recovering, right?

I’ll do my best to hold on to that. Maybe writing down my anxieties will get me through them. Still operating on the theory that writing it down gets it into my frontal cortex, and from my frontal cortex I can get rid of it.

In cuter news there’s a turtle in the yard this morning. Ain’t he adorable?

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