New Disease Coming Soon

New Disease Coming Soon

A forty-four year old woman can be absolutely certain that something is the right thing to do and still pout and whine about it. Ask me how I know.

My oncologist called and reminded me there was that matter of the nodule on my lung that showed up in the last CT scan. With all the lupus stuff preoccupying my tumored brain, I’d forgotten about it. He didn’t though.

He recommended a biopsy, reasoning that if it is cancer, it’d be so easy to treat right now. A little zap and voila! Early detection and all that jazz.

I know he is absolutely right. But I also know my body’s proclivity for racking up procedures that don’t help identify a damn thing.

He’s going to put in the referral.

Damn it.

When I got home from the rheumatologist’s appointment Wednesday, I was so buoyed too. “I’m taking all of August off from doctor shit,” I told Dan.

Fucking hell.

Dr. Oncologist also sent my lymph tissue off to Cleveland Clinic for a second opinion, which was pretty cool of him. They agree the lymphadenopathy is not cancer, and a couple of other tests also came back negative.

So my lupus theory holds for now, and I’m well aware that lupus can cause lung issues too. In light of that: no vape, only edibles. I get better pain relief from edibles anyway.

That reminds me. While we were talking, Dr. Oncologist asked me again if I’d ever been told I have an autoimmune disease. Heh. So I told him about the lupus not being confirmed or ruled out and about the hydroxychloroquine, and he seemed to think that was a good plan.

I’ve been told numerous times over the course of many years that “something autoimmune is going on” but no one can ever diagnose what exactly it is. I’m trying not to get all twitchy about it while I’m typing this.

“Maybe you’ll get a disease named after you,” Dan joked.

I’ve been thinking about that and have decided if I could name a new disease, I’d give it some attitude. Like “fuck this noise disease” or something.

Anyway, that sound means it’s time to ask for financial help again. Small donations of $10 and/or sharing the link are always helpful.

Lupus with an Asterisk

Lupus with an Asterisk

I have to channel all this hope somewhere, so I’ve been reading and contemplating lupus the last 36 hours or so since my appointment with the rheumatologist.

I have been muddling over the best way to characterize what’s going on with me healthwise. I want to talk about it in the easiest way without mischaracterizing the details for new visitors.

So here’s the deal. I’m going to call this collection of progressively horrible symptoms I’ve been experiencing for the last couple of years lupus with an asterisk.

The asterisk meaning the diagnosis isn’t official. It’s just that my particular brand of autoimmune dysfunction aligns best with that diagnosis for now, and I don’t want to mess with the caveats every time I blog.

I’ll just link back to this page, and let people read what they find useful. Of course I understand this Dx could change at anytime, but someone who lands here through a search, for example, might benefit from some context.

Drug-induced Lupus

But for Temodar, I don’t think I’d be contemplating a lupus diagnosis at all. I believe that chemotherapy further freaked out my immune system when the cancer already had it confused.

Just based on anecdotal family history, I think I was genetically predisposed to autoimmune shenanigans.

There’s such a thing as drug-induced lupus, and that makes the most sense to me. I don’t have any scientific proof of that claim; it’s just my best working theory. I’m not a medical professional, but I’m a professional chronic illness patient from way back.

In 2017, I had an ER-level reaction to the increased dose of Temodar that was supposed to kick off adjuvant chemotherapy, and a surprise reaction to sulfa antibiotics shortly thereafter. It just feels like lupus is very likely, you dig?

“Whenever possible, people with lupus should avoid taking sulfa-containing antibiotics (or sulfonamides) as these drugs can exacerbate lupus symptoms in some individuals. People with lupus are also more likely to be allergic to sulfonamides compared to the general population.”

lupus.org

Lupus and Allergies

In addition to the sulfa reaction, I’ve had various reactions to weird things that feel like allergies. Sneezing and the usual allergic malaise have come my way after being in contact with previously unremarkable stuff.

There was arugula. Then the spinach. Then toothpaste.

Here’s what I learned:

“Allergic disorders commonly occur in patients with systemic lupus erythematosus (SLE) and allergies to some drugs may occasionally be related to disease flares.”

PubMed

Lupus and IBS

Man, everything I eat makes me hurt now. I’ve been blogging about constipation and diarrhea for a while, too. But also there’s bloating, swelling, and constant abdominal pain I don’t detail much because I don’t know what to say. I’m miserable and too exhausted by it to elaborate.

Turns out gut stuff is not uncommon for people with lupus:

“A person living with lupus may develop intestinal issues, such as IBS. IBS can cause similar symptoms to gastroenteritis, such as abdominal pain and diarrhea.”

Medical News Today

Other Potential Lupus Symptoms

With the symptoms of cancer and the side effects of associated treatment, it’s hard to know what’s what. Here are some other things I experience that may or may not be lupus symptoms:

  • Heat intolerance
  • Swollen lymph nodes
  • Soft tissue inflammation
  • Positive ANA
  • Dry mouth and eyes
  • Sun sensitivity (rashes)
  • General fatigue
  • Muscle pain and fatigue
  • Elevated sedimentation rate
  • Headaches

Lupus with an Asterisk

So that’s why I think I have lupus and the rheumatologist is starting me on Plaquenil (hydroxychloroquine).

When I try to make sense of why I feel so terrible at a potentially early stage of the autoimmune disease, I rationalize that my baseline was utter shit to begin with. Brain tumors are problematic like that. With that POV, lupus makes a fair bit of sense.

Still, there are symptoms I don’t have—like fever, joint inflammation, and the characteristic butterfly rash—that would help make this diagnosis easier.

Anyway, I don’t care if randos think I’m a hypochondriac, but I want people looking here for potential answers to their own medical mysteries to have a factual understanding of mine.

Review: Incredibles Strawberry Crunch Bar

Review: Incredibles Strawberry Crunch Bar

Friday, on day two of my migraine, I dipped back into my stash of medical marijuana edibles.

I picked out two new-to-me edibles from the dispensary last week. I already reviewed the first—cherry chews from Betty’s Eddies. Today’s review is for the Incredibles Strawberry Crunch white chocolate bar with crispy rice.

Rating: ⭐⭐⭐ (3/5)

Product: Strawberry Crunch Bar by Incredibles

Cannabis Type: Indica? Maybe? I looked up indica edibles when browsing the Cloud9 website, but it’s not specified on the box or the product listing now that I’m trying to verify my assumptions.

Price: $20

Dose: 10 mg ea. Piece / 100 mg total

THC: 10 mg

Taste: It’s just okay. I think white chocolate is pretty boring. It’s sweet without much texture or flavor. The crispy rice seems sparse.

Certainly not gross but also not what I’d call good. Maybe that’s ideal? If I like it too much, I might struggle to pace myself.

Overall High: 7/10

The high was noticeable and good, but one-dimensional feeling because I had the Ache Away Eddies for comparison.

Time to High: 70 minutes

That was on an empty stomach, how I usually take edibles. Unless the pain is dire, I like to eat after I’ve had an edible. Food tastes better. If you know, you know.

Duration of High: 3 hours 20 minutes

I was mostly just sleepy, but also acutely aware that I didn’t feel as miserable. Always a win.

Pain Relief: 8/10

Definitely worth taking. I’m not sure if the back-to-back days of having edibles impacted the pain relief or not. It seemed what I might expect in pain relief from a THC-only indica strain. Reliable relief that I wish was just a little better.

Munchies (Intensity): 6/10

I was on the lookout for food in general, but I was hungry when the show started. No specific food cravings.

Couchlock (Intensity): 5/10

I wasn’t what you’d call motivated, Bob.

Time Dilation (Intensity) 8/10

I had to look at the clock frequently or lose myself to time.

Notes on Packaging:

It looks pretty and is designed to be childproof, but in this disabled household it’s not convenient. I had a hard time gripping the tray. Also i didn’t want to ruin the box, for reasons I cannot explain but others can probably relate to.

You might also like: How to Make Crockpot Cannabutter

Review: Ache Away Eddies Cherry Chews from Betty’s Eddies

Review: Ache Away Eddies Cherry Chews from Betty’s Eddies

Thursday I experienced the kind of migraine that had me losing feeling in my arm, pulling window shades down to protect my eyes, smelling the hickory in bacon two thousand times stronger than the average human, and forgetting common words.

I tried relieving the monster headache part with caffeine and acetaminophen, but it didn’t help enough. So I asked Dan if he’d run to Cloud 9 for me and pick up what I’d picked out online.

Medical marijuana to the rescue.

I picked out two new-to-me edibles and tried one immediately yesterday. Thought I’d review the first—cherry chews from Betty’s Eddies—today. There was no way I was typing up a coherent review while high yesterday.

And, girl, was I high. This review should be fun.

Rating: ⭐⭐⭐⭐⭐ (5/5)

Product: Betty’s Eddies Ache Away Eddies cherry fruit chews

Cannabis Type: Hybrid

Price: $25

Dose: 10 mg ea. / 100 mg total

THC: 10 mg; CBD: 40 mg; CBC: 5 mg

Taste: Surprisingly delicious. Reminiscent of a Now & Later in tartness and flavor, but much softer to chew. I could taste the weed, but I’ve yet to come across an edible that doesn’t have that distinctive flavor.

Maybe that’s on purpose.

Overall High: 13/10

Now, I am more sensitive to THC than some, what Dan calls a cheap date. So the fact that I took one chew and it melted my face probably boils down to two things: 1.) I hadn’t consumed an edible in a while, and 2.) a more conservative dose for me would be 5 mg.

But the chew was wrapped so cutely like saltwater taffy at 10 mg! Who was I to cut it in half?

Time to High: 30 minutes

I thought the “fast acting” bit on the package was probably overstated marketing baloney before I took one, but half an hour is faster than most. It usually takes me about 90 minutes to hit peak.

Duration of High: 2 hours

I was unable to stop smiling, repeatedly asking Dan to remind me I’d taken drugs in case I got scared (I was worried about me, d’aww), and generally euphoric for two hours.

Pain Relief: 9/10

I’m still running on reduced pain today. Yes, I know the pain is there, but it’s possible to get comfortable and forget about it for 30 minutes at a time this morning. I like that!

Munchies (Intensity): 4/10

What I ate during this period (a giant bowl of ice cream with strawberries) was exceptionally good, but my generalized desire to eat was shockingly mild.

Couchlock (Intensity): 8/10

Don’t make plans.

Time Dilation (Intensity) 9/10

I checked the clock at 12:42 pm convinced it was probably almost 7:00 pm.

Notes on CBC and Turmeric:

This was my first time trying anything labeled CBC along with the usual THC and CBD. It turns out CBC is something dispensaries and manufacturers are hyping for its anti-inflammatory properties.

Is it actually a thing, though? I don’t know.

From Wikipedia: “Cannabichromene (CBC), also called cannabichrome, cannanbichromene, pentylcannabichromene or cannabinochromene, exhibits anti-inflammatory properties in vitro, which may, theoretically, contribute to cannabis analgesic effects.”

This bag also notes that it contains turmeric. Which I’ve heard good things about, but again not scientific things.

You might also like: How to Make Crockpot Cannabutter

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.

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.

This post contains affiliate links.

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.

10 Zentangle Benefits for Cancer Patients

10 Zentangle Benefits for Cancer Patients

As a brain tumor survivor, I want everyone I know to try meditative art. It’s fun, but there’s even more to it. I mean, if oncology nurses reported Zentangle’s a good stress reliever in a pilot study, there must be Zentangle benefits for cancer patients too. And what about caregivers? Maybe we all need a little Zentangle in our lives.

Zentangle Pattern Molygon from CZT training day 3
Molygon pattern from CZT training

Calms Anxiety

Focusing on learning new Zentangle patterns is a way to take a break from worry. You deserve that respite, and when you Zentangle your mind just naturally drifts away from the things that cause you to dwell on your anxietes.

Distracts from the Pain

No matter if your pain is caused by the cancer itself or the treatment, concentrating on your Zentangle can distract from the stuff that hurts. Giving you something pleasing to focus on is one of the greatest benefits of Zentangle.

Passes Time

Having cancer can be lonely. Sometimes you just need to pass the time and Zentangling is a great way to do that. Plus at the end you have something nice to look at that you created. You can hang on to your art, or you can give it away.

Increases Gratitude

Taking a little time to appreciate our supplies—and the practice of Zentangle itself—is good for the soul. It’s easy to get caught up thinking about how terrible everything is while forgetting the good stuff is still there too. 

String taught by Sandhya Manne

Strengthens Family Bonds

Like a tabletop game, Zentangle gives you the opportunity to bond with the ones you love. When you’re done you can appreciate what each of you have created and there’s no age limit—kids, parents, and grandparents can all participate. 

Connects You with Patients

If you’re looking for something social to do at the infusion clinic, why not try Zentangle? You can learn new patterns or try a YouTube tutorial while you wait on that IV bag to empty.

Reduces Stress

Every part of having cancer is stressful. From commuting to treatments to wondering how you’re going to pay the bills, Zentangle can give you a break from all of that. It’s like, as the book is aptly titled, Yoga for Your Brain.

Bijou Zentangle Pattern Arukas
Arukas Zentangle Pattern

Provides Enjoyment

Drawing and doodling are two very therapeutic and enjoyable activities. The brain naturally relaxes when you do something creative like Zentangle.

Flexes Creativity

The human brain needs to be creative,  but cancer fatigue and chemo brain can make that difficult. Zentangle doesn’t require elaborate sketching or planning. You just go with it and see where each Zentangle pattern takes you.

Combats Insomnia

Whether your meds, the nausea, or the worry are keeping you up at night, you can occupy your time with meditative art. And because you don’t need an elaborate studio or fancy supplies, you can Zentangle in bed or from the comfort of your favorite chair.

I’m a huge fan of Zentangle obviously, and I recommend it to almost everyone I know. It’s great for cancer patients or anyone who needs a little break from the stress of life.

Get started now

Free videos: 9 Easy Zentangle Patterns

It’s Not the Cancer, It’s the Chemo

It’s Not the Cancer, It’s the Chemo

I’m having a day. I was on the fence about writing about it, because the part of me that is severely chemo depressed right now is like, why expend the energy trying to be understood? This is unexplainable. You will waste time and precious energy and still no one will understand.

Maybe I just need the thoughts out of my head and into The Void.

It’s Friday, so it’s sheet washing day. I got the fitted sheet on the bed. Then I rested and put the top sheet on the bed. I’ve still got pillow cases and the quilt to go.

But I had to stop and take a break and stare at the spinning walls for 30 minutes while wallowing in self-pity about how difficult everything is. Yes, Dan will help me if I ask.

But holy shit, I am tired of having to ask for help with ev-uh-ree-thing. And sometimes I have to prove to myself that,  yes, I do actually need the help. Been a gaslighting recipient one too many times I guess.

While my pulse was racing, it occurred to me that this is maybe something I can use when talking to my doctors and nurses.

“Does your pulse usually run high?” (Every visit starts with vitals.)

Yes! Fucking yes! Every time I’m in here you ask me that. It’s always like this!

But it occurs to me that I should be spelling it out for them. “I walked ten feet with a mobility aid, and my pulse is as high as if Healthy Me had completed 30 minutes of jogging. Now do you fucking get it? This is what fatigue level 7 looks like. Stop pretending those god damn numbers from 1-10 mean anything to you!”

But I am not actually mad at the medical staff. They are caring. I am just mad at life. At how unfair literally everything is.

I’m tired. I’m exhausted. I’m fatigued. But no one has any idea what those words mean. Because they’ll say them right before they binge watch a TV series while SITTING UP and maybe even walking to the kitchen for a snack.

I know this is just how I feel some days. I don’t need a pep talk. Thanks anyway.

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