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.

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.

How to Cope with Scanxiety: A Brain Cancer Survivor’s POV

How to Cope with Scanxiety: A Brain Cancer Survivor’s POV

Living with cancer is hard, but anxiety around routine scans compounds feelings of fear and worry. Scanxiety is the angst you feel when it’s time for another medical scan. I know it well. Too well. Here’s how I cope.

Meditation

If you’re new to meditation, I recommend a guided practice like this podcast episode from Tara Brach. Meditation brings you into the present. While your brain is focused on the here and now, it can’t be distracted by life’s “what ifs” and spend too much time imagining what could go wrong.

Exercise 

Take your dog for a walk, play a sport, or film a TikTok dance video. It matters less how you move and more that you move. Movement boosts endorphins and distracts you from your fixation on those MRI or PET scan results.

Medication

While being anxious over the results of a scan is a normal human emotion, It’s not one most of us enjoy. In fact, it can complicate an existing physical illness. And sometimes medication is the best way to deal with it. There’s no shame in getting help where you can find it.

Sleep Aids

Taking supplements like melatonin to help you sleep can prevent insomnia from making your scanxiety worse. Talk to your doctor to see whether starting a sleep regimen that includes melatonin might be helpful for you.

Medical Marijuana

While getting high can certainly be a fun way to take your mind off your worries, you can also microdose medical marijuana to keep calm. Take it before your exam and while you wait for your scan results. Make edibles with cannabutter or try vape for more immediate relief.

Prescriptions

Anti-anxiety medications like alprazolam can be very effective, and in the U.S. often come with the added benefit of being covered by insurance. Talk to your primary care physician or oncologist about your possibilities.

Hobbies

Reducing anxiety is about giving your brain something else to focus on. Something you enjoy. Here are a few ideas if you’re looking for something calming to do:

Zentangle

Zentangle is a form of meditative drawing that can reduce your symptoms. It is increasingly popular among cancer patients. Learn more about it here.

Baking

Many people report that baking for themselves or others is a form of therapy. If you have the energy for it, give it a try. Put scanxiety on the back burner.

Birding

Birding can get you in nature which reduces stress by lowering blood pressure and stress hormones. But it can help even if you can’t get outside. Try a bird feeder with a camera or downloading the Merlin app and identifying bird songs through an open window.

Gardening

If you enjoy getting your hands dirty, gardening is a great way to reduce anxiety. It’s rewarding to see plants grow and flowers bloom and know that you had a part in making something beautiful happen. It’s also satisfying to grow your own vegetables and cook. Planning your garden in the off season can also relieve stress.

Gaming

If you prefer to—or need to—stay indoors, video games provide a distraction from worry too. We have a tendency to view things negatively when they are actually quite helpful, and video gaming is one of those things thatbis too easily criticized. Whether you like Fallout 4 or Animal Crossing, play what brings you joy.

Small Comforts

Sip tea while reading a cozy mystery under a weighted blanket. Maybe play soothing rain sounds on your noise machine. Watch your favorite TV show. Whatever comforts you after a long day at the office can also comfort you during a bout of scanxiety. Take care of yourself by recognizing your need for downtime.

Personal Connections

isolation can make anxiety worse, so maintaining social connections is important. Whether you need to talk about your fears or you need a distraction from them, other people can provide the sense of community you need.

Support Groups

Support groups are an opportunity to be with people who get it. In addition to feeling less lonely, isolated or judged, it can be helpful to talk to someone not immediately affected by your illness, because sometimes feeling like a burden is a burden.

Family and Friends

The people who know you best can sometimes make you feel your best. Keep a standing date for game night or movie night or pizza night or whatever it is that you and your people enjoy. During that time scanxiety probably won’t find a seat at the table.

Social Media

If you can’t physically get to a support group meeting, social media can be a lifesaver. From Facebook groups to cancer-related hashtags, empathy and advice are available 24/7 because someone is always listening.

Mundane Chores

Doing the dishes or folding the laundry can give you a sense of accomplishment. The distracrion and hit of dopamine might be just what you need to get out of your own head until your anxiety wanes.

For many, it’s waiting for the results to come in that’s the most difficult. If you’re in that boat, you’re not alone. Don’t be afraid to ask for the help you need.

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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?

Go Gray in May for Brain Tumor Awareness Month

Go Gray in May for Brain Tumor Awareness Month

This year for Brain Tumor Awareness Month, I’m seven years post-diagnosis. It feels like a big deal.

Free brain image in Zentangle style, black and white digital with test "go gray in May" and attribution to emilysuess.com

My Brain Tumor Diagnosis

In February 2017, I was diagnosed with a rare, relatively slow-growing brain tumor. The kind of brain cancer that is overshadowed in the news by stories of politicians with GBM, for example

I believe those stories are important and impactful, but so is mine. So are the stories of all the people whose lives are altered by treatment, bills, and disability and whose names aren’t immediately recognizable.

Every Brain Tumor is Different

Brain tumors can be benign or malignant. They can be in different areas of the brain that affect different processes in the body. For example, seizures are a common symptom of brain tumors, yet I’ve never had one. I am most effected by muscle issues, balance problems, and pain. But there are any number of complications that a patient might report.

Support for Brain Tumor Survivors

Empathy is what I want most. But it’s a very elusive thing, trying to explain to people with actual words what I’m experiencing. I always feel like a failure in the end. There are no words.

But there are specific things people have done for me when my words fail.

The Thing about Early Detection

When it comes to cancer, you hear a lot of well-intentioned people talk about early detection, but that’s an oversimplification for sure. Since pain was and is my key complaint, I didn’t get an MRI when I first sensed something was wrong. what I got was a misdiagnosis and a couple years of Bonus Struggle.

Lacking a dramatic symptom, you might have to push for answers too. I want people who haven’t yet had this fight to try to imagine what it’s like. I want people who are going through it to know I care.

Patient stories matter, and I encourage you to talk about Brain Tumor Awareness Month 2024 with me. If you need free graphics, I shared some here.

Screenshot_20240503_135647_Amazon-Shopping

Go Gray In May Brain Tumor Cancer Awareness Day Grey Ribbon T-Shirt

$15.99

Literary Agent Rejection Letter

Literary Agent Rejection Letter

I got my first literary agent rejection letter on Sunday, and I feel so alive. I’m not sure that’s a normal response for writers to have. I think I’m supposed to feel bitter resentment. But things have been pretty dull here for a while, which severely exacerbates bored depression.

I’ve counted ceiling tiles a few too many times already.

The agent’s email was kind, explaining how Who You Gonna Believe didn’t fit into her current list of working titles. But I still wonder how straightforward the rejections are. 

Like does she genuinely think the manuscript sounds intriguing, or is she just saying that because I have brain cancer and she doesn’t want to hurt my feelings?

I run into the hurt feelings thing a lot, as you might imagine. It doesn’t make me mad. It just makes me wonder. I appreciate that people are trying to be nice, but I also appreciate bluntness because it protects my energy reserves.

I’m probably one of few who would rather hear, “this is not marketable in any universe” than “it’s not for me.” Provided it’s true, of course.

Which is why I was trying to get feedback before querying in the first place. I thought it would save me the agony of deciphering. I was protecting myself.

By the way, I rejected all of those proposals I mentioned previously because I didn’t have the energy to interpret responses. (That’s not a reason listed in Reedsy’s drop-down menu, in case you were wondering.)

That’s the story of my first rejection letter, dull as it is. Maybe one day I will wish I could remember it, but for now it feels very forgettable. It was as impactful as a cookie-cutter reply from HR after submitting the first resume and cover letter of a job search.

The self-doubt comes later.

Free Brain Images for Brain Tumor Awareness Month

Free Brain Images for Brain Tumor Awareness Month

Seeing how I already donated some brain tumor cells to researchers back in 2017, there probably isn’t much more I can contribute to Brain Tumor Awareness Month this year than giving you permission to use these copyright free brain images on your website, blog, or social media profiles.

Change them up however you like. You can give attribution if you want, but it’s not necessary. You can also use them anytime—not just in May.

Common Brain Tumor Symptoms

It’s important you know how to recognize the symptoms in yourself and recognize them in others. Symptoms vary by tumor location, but these are the most common:

  • Headaches that are persistent or severe
  • Abnormal gait or awkward coordination that make it difficult to walk
  • Muscle weakness
  • Imbalance
  • Dizziness or vertigo
  • Fatigue
  • Nausea or vomiting
  • Pins and needles or numbness
  • Inability to speak or understand language
  • Confusion
  • Blurred vision
  • Dfficulty speaking or slurred speech
  • Personality or mood changes
  • Seizures

About My Brain Tumor

i was diagnosed with a diffuse astrocytoma on my brain stem in 2017 and have done radiation once, and chemotherapy a few times—both temozolomide and gleostine.

Treatment reduced the size of my tumor, but it’s in a spot that neurosurgeons consider inoperable, and I still live with it. It’s classified as grade II, and is relatively slow-growing. I was initially treated at Barnes-Jewish hospital in St. Louis, and have since received care from fantastic doctors at Carle in Champaign-Urbana, IL and Cancer Care Specialists of Illinois in O’Fallon, IL.

if you use any of these free brain images this May for Brain Tumor Awareness Month and want me to know, leave me a comment and drop a link so I can follow you.

When Things Don’t Go Well: Cancer Edition

When Things Don’t Go Well: Cancer Edition

Tried recording a little bit of voiceover for a brain tumor friend’s Rock Opera charity thingy, and sometimes these things don’t go well. At least not lying down. I will try again later when I’m sitting up. Otherwise the recording is just going to need a lot of editing.

Monday evening didn’t go well either. There was Taco Bell and a giant stomach bloat, and then a forced shower I wasn’t planning on. 

I think it’s because the cleaners were late? See, we usually order food when they’re done, but they didn’t leave until 4:30, and I usually order by 2:00. That’s a little late for lunch, but it’s usually fine.

However.

When I don’t eat for a long time, and then eat a lot quickly because I am super hungry? 

BOOM.

Just keeping it real. I know how everyone thinks having brain cancer is so glamorous. 

While I whined about the unbudgeted energy I had to use up showering, I lamented that I broke my own 24-hour rule.

The rule is: you can’t make a mess here for 24 hours after the cleaners come. That way I get to enjoy a tidy home once every two weeks. It’s a rule that has historically applied to the pets, but it has since expanded to be the reason we don’t cook here every other Monday.

Well, we have to DoorDash way more frequently than that, but you know what I mean.

One thing I need to do now that I have additional insurance is postpone my rheumatology appointment this week. I’m thinking sometime in June now. But I don’t know, we’ll just see what’s available after coverage starts and what I think I can reasonably expect of myself. June is supposed to be routine MRI month too. And that’s also a whole-ass thing.

The inner dialogue I have regarding the rheumatologist sitch isn’t going well right now either. There’s a whole lot of me saying to myself: just cancel it. It’s going to be a huge waste of time.

That’s the fun of chronic illness. Wanting to be better, but getting nothing but extremely expensive and increasingly exhausting non-answers.

So, yeah. That’s what a blog post looks like when things don’t go well. A lot.

The Death of OJ Simpson and Other Stuff

The Death of OJ Simpson and Other Stuff

Seeing how it’s Friday and I’ve had a very responsible amount of iced coffee (for someone who suffers intermittent bouts of insomnia), I thought I’d do a roundup post of stuff I did or saw this week, starting with news of the death of OJ Simpson.

Generally, I see the world divided into two groups when it comes to cracking jokes about celebrity death: those who have accepted their own mortality and those who haven’t. 

Knowing I have brain cancer and am not fond of murderers, you might guess I belong to the former group, which means I don’t really buy into the concept of not speaking ill of OJ Simpson. Which means the internet jokes about expired juice are cracking me up.

The jokes about Simpson’s coffin being a juice box are also pretty funny.

Remember, kids: live your life in such a way that people are sad when you die. Don’t do domestic violence and murder.

***

Despite being an exhausted bundle of histamines this week, I managed to make more progress building up and improving this website.

I wrote a long-form article, Ultimate Guide: Helping a Loved One with Brain Cancer, in the hopes the search engine gods will smile on me.

I also fixed my contact form, tweaked my menu links, and tried to glean as much information about my (pretty low) site traffic as I could during my free 30-day trial of StatCounter. Maybe one day I’ll be able to afford being sick.

***

Speaking of, I’m doing the GoFundMe thing again. I got another bill from the hospital, noting I still owe them about $280. 

$16,000 in charges (not all out of pocket, thank dog, but not including charges from the surgeon, pathology lab, and anesthesiologist) makes me feel like I should at least have a diagnosis for these damn lymph nodes, but that’s not how this works.

That’s not how any of this works.

So until this website of extremely niche weed, cancer, and Zentangle content gets noticed (I am hopeful about that, actually) and starts raking in the big bucks (I am not delusional about that actually), I guess I’ll just keep updating my GoFundMe goal.

GoFundMe QR code
Tap, click, or scan to view.

***

Speaking of medical bills and GoFundMe, the Corolla has a car doctor appointment next week. Pray for it.

***

While we’re here might as well end with a couple of good jokes about the death of OJ Simpson that I saw on social media.

OJ can rest in peace, knowing his ex-wife’s murderer is finally dead.

Now that OJ Simpson’s dead, get ready for the woke police to dig up something shady he did.

It’s poetic Ford announced a recall on Broncos the same day Satan announced a recall on OJ Simpson.

I’ll see myself out. Have a good weekend, my friends.

My Body is a Wonderland

My Body is a Wonderland

As anticipated, the antinuclear antibody (ANA) test results triggered oncology to refer me to rheumatology. What can I say? Chronic illness. My body is a wonderland.

I’ve been to a rheumatologist before, and that, uh, didn’t go well. So I need to be on the lookout for any signs my anxiety-prone mind is starting to spiral.

I feel hopeful and relaxed now, sure. But they don’t call it trauma because it just goes away and you’re never reminded of it again. It feels weirdly like I’m being vigilant about my tendency toward hyper-vigilance.

Sometimes it do be like that.

The doctor is in St. Louis, which I don’t like for a few reasons. I mean, St. Louis is a fine city, but I wish it were a city in Illinois.

Missouri is bass-ackwards when it comes to the political stuff, which more and more seeks to strangle what choices doctors and patients have. While it might not affect me in this particular situation, it’s the principle. And on principle, I’m pissed.

But this is not a post about that. And anyway, if you don’t already know my politics, you must be new here. (Hi! A few blog clicks should give you all the context you need.)

Back to this present medical mystery and enduring chronic illness. I suppose it doesn’t really matter if I had something rheumatological going on this whole decade, but it’s definitely a thought that’s crossing my mind. Because even the Rheumatologist from Hell™ managed to tell me there was “something autoimmune” going on back in 2014.

Not that he was the least bit curious what that might be.

Ahem. Stay on track, Emily.

So were those autoimmune findings separate from or related to the brain cancer? Getting shingles can trigger some shit, and chemo can screw up immune systems. Plus they intentionally nuked my thyroid 20 years ago. My gallbladder got sassy and now it’s gone. The last PET scan, my liver was like, “Hey, girl! Have a node! Muah!

So if it started with something autoimmune, it wouldn’t be surprising that it’s worse ten years and some-odd cancer treatments later. Right?

As I was saying, my body is a wonderland. Just not in the sexy John Mayer way. It’s more the riddle-wrapped-in-a-mystery-inside-an-enigma-that-results-in-the-atomic-bomb way.

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