7 Signs of a Bad Doctor

7 Signs of a Bad Doctor

I’m sharing personal anecdotes with these 7 signs of a bad doctor for a few reasons:

First, I want you to know that if you’ve got a crummy doc, you’re not alone. So many people can relate. (The hashtag #DoctorsAreD*ckheads existed on Twitter for a reason!)

Second, it might help you see warning signs in your own care. Maybe you just don’t like your doctor; maybe your doctor is genuinely terrible.

Remember: doctors, like anyone else, are not good just because they chose a profession of prestige and authority. They still have to be competent at what they do—just like the rest of us.

So what are the 7 signs of a bad doctor?

  1. Your Doctor Doesn’t Listen
  2. Your Doctor Blames You
  3. Your Doctor Makes You Feel Rushed
  4. Your Doctor Doesn’t Ask Clarifying Questions
  5. Your Doctor Takes It Personally When Medications and Treatments Fail
  6. Your Doctor Isn’t Personable
  7. Your Doctor has Bad Patient Reviews

7 Signs of Your Doctor Sucks

1. A Bad Doctor Doesn’t Listen

The worst doctor I ever had—The Rheumatologist from Hell™—would barely make eye contact with me. He was always scribbling something in my chart, unengaged and uttering only the perfunctory mm-hmm. At a time when I felt afraid and unsure, this was definitely not helpful.

I let his board know it, too. (Please report bad doctors whose actions cause you actual harm.)

Was he a terrible diagnostician or just bad at relating to me? Either way, I paid a significant price as a chronic pain patient, and I wonder now how many others did too. It’s a big deal and harmful—sometimes life-threatening—to be ignored. Ask me how I know.

2. A Bad Doctor Blames You

There were only so many times I could be told that diet and exercise were my problem before I realized the doctor was making my problem worse by taking the easy out.

As it turns out, all these years later, I’ve still never read a single article confirming that I wouldn’t have brain cancer if I’d just managed to lose 15 pounds. It’s bullshit, but it was fed to me repeatedly.

Sometimes the doctor’s admonition is what it is—fear of fat. Sometimes the extra weight is a result of disability and immobility. Sometimes food is the only scrap of comfort available precisely because no one will listen.

Me, bloated and fat from the dexamethasone, on the last day of radiation for my brain tumor. I am surrounded by my family.

The why doesn’t change this truth:

A failure to see any other possibility or acknowledge an inability to diagnose your condition in spite of an “unideal” weight is a red flag. No one knows everything, and any doctor who can’t accept their imperfection is doing patients a huge disservice.

3. A Bad Doctor Makes You Feel Rushed

The worst doctors I’ve had made me feel like they had somewhere else—maybe even somewhere better—to be. 

It hasn’t happened to me a lot, mostly because I’ve been waiting so long in uncomfortable chairs that I’m the one who wants out of there, fast. But when it happens, it’s not subtle. It distracts me from outlining my numerous symptoms, which I have a hard time recounting due to health-related anxieties.

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4. A Bad Doctor Doesn’t Ask Clarifying Questions

While I’m relaying my symptoms, I expect my doctor to ask clarifying questions. If I could diagnose myself and knew exactly what was important to share, I would probably just ask for the right tests from the start and save myself a lot of money and a lot of heartache, right?

If I say something like “this hurts” and my doctor wants to know the whens and hows of the pain, I feel much more confident that vital information is being considered. And who doesn’t want a shorter trip to diagnosis because all the facts are being considered, not just the easy ones?

Me and my husband, Dan, celebrating his birthday in Milwaukee, Wisconsin.

5.  A Bad Doctor Takes It Personally When Medications and Treatments Fail

I write a lot about The Rheumatologist from Hell™, but it’s because he so effortlessly did so much emotional damage that I have to work to undo all these years later. Present me wants to scream, “This isn’t about you! Don’t bill me for this crap!”

When Cymbalta (duloxetine) didn’t make me feel better, my old rheumatologist didn’t pivot or refer me to someone he thought might be able to help, he doubled down. He told me I’d hurt more if I didn’t take what he prescribed, and essentially blamed me for non-compliance before I was non-compliant.

6. A Bad Doctor isn’t Personable

Sometimes doctors are emotionally cold and you leave feeling less than human. These are bad doctors, no question about it. 

There is a certain level of detachment that’s completely appropriate, but if you walk away feeling less than or othered, it’s not you. More than anything I want you to know it’s not you.

7. A Bad Doctor has Bad Patient Reviews

A single bad review isn’t necessarily a reason not to see a doctor. We all know a lot of complicated factors determine which offices we end up visiting.

Doctors and patients can have bad days, and patients might be more likely to leave complaints on review sites when that happens.

But if you find a lot of reviews addressing the same problems repeatedly, that’s a sign you’ve got a bad doctor. When I feel like I don’t have a choice but to see a physician with a lot of negative feedback, at least I know what I’m walking into. There’s some solace in that.

Reporting a bad doctor for me is a moral imperative. But it’s equally important to share my good experiences too. It takes me only a few minutes to let other patients know what they can expect.

Pro Tip: for reviews, search for your provider on websites like Healthgrades and Vitals.

Share You Experiences with Bad Doctors in the Comments

Those are my own personal 7 signs of a bad doctor. I’ve probably missed some helpful stuff though. Let us all know what warnings you would add to the list by leaving a comment, and read about my fantastic new primary doctor.

PS: if you’re stuck with a bad doctor and trying to make the best of a bad situation, maybe this article will help: How to Get Your Doctor to Listen

PPS: If you need help relaxing because your doctor is lousy, try making weed butter or learning how to Zentangle! (Wink, wink.)

Surgery is Happening

Surgery is Happening

Note to self: Don’t ask Dan to get chocolate from Sam’s when you’re having a craving and you’ve just taken weed.

Yesterday was my appointment with the surgeon for the consult. Surgery is happening.

The consult went okay, and Doctor S answered all the questions that I had. On February 2nd, I’ll be having a lymph node removed from either my groin or my armpit. Ultrasound will determine which one is easiest to get to, so TBD on that spec.

He did say that they will fully examine the tissue to find out what’s freaking going on, but if it’s a viral infection we might not find out which. Yay. 

We’re not just looking for lymphoma this time, though. That makes this round feel like it could provide useful information. Lord knows I’m capital-d DONE with doctors and nurses punching my glands with their bony fingers though. 

It hurts more every time they do it. I jokingly asked how many lymph nodes were needed for a human to survive and could they take all of them while they’re in there.

I asked if I was facing general or local anesthesia, and doc said he’d do either and it was my choice. I’m leaning local, just because I think getting myself to the bathroom after will be easier.

No pain meds will be prescribed. Just Tylenol if needed. (Which, let’s be real, means I need to save up for some edibles.)

Recovery and risk are minimal.

***

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***

We spent more time than should be allowable by law in the waiting room yesterday, so here are some terrible, non-HIPAA violating pictures I took to help pass the time.

How to Make Crock Pot Cannabutter

How to Make Crock Pot Cannabutter

To save money, I learned how to make crock pot cannabutter (THC infused weed butter) that I could use in homemade edibles. I am by no means an expert, but I want to share what I’ve learned.

When it comes to medical marijuana, I prefer edibles. For me, the pain-relief is better and lasts longer. The downside? Dispensary edibles cost a small fortune. This is my recipe for how to make cannabutter in a crockpot.

Crock Pot Cannabutter Recipe

The first time I made slow cooker cannabutter, I was overwhelmed with advice. Everyone had a different recipe and a different method. My chemo brain just couldn’t handle all that. I needed a crockpot cannabutter recipe for dummies, so I whittled away until I could identify the most basic steps:

  1. Decarb the weed.
  2. Slow cook the weed in butter.
  3. Use the cannabutter in a recipe.

Step 1: Decarb the weed

Time: 30 minutes

If you don’t decarb cannabis, your cannabutter could be really disappointing. The THC needs to be activated by this simple process, and a few minutes in the oven will do the trick. Here’s what to do:

Materials

  • Baking sheet
  • Parchment paper
  • 6-7 grams of weed
  • Oven

Instructions

Preheat your oven to 250 °F (120 °C). Place marijuana on a parchment-lined baking sheet and bake on the middle oven rack for about 30 minutes.

FYI: Decarbing will make your house smell like weed.

Notes on Decarbing

Break up whole buds into smaller pieces first. This increases surface area and allows things to heat more evenly.

Some people are very particular about breaking bud, recommending you do it by hand or with a manual grinder. (Get your pieces too small and they might burn or be hard to strain later.)

But because of cancer fatigue, I’m from the School of Do Everything the Easiest Way Possible. I recommend giving whole buds a couple of quick pulses in a clean coffee or spice grinder, being careful not to overdo it.

That said, it’s even easier if you use shake. Shake is essentially just the debris left after trimming and handling buds. There’s no need to grind it because it’s already the perfect size.

Added bonus: because shake’s ugly and contains some stem pieces, it’s a lot cheaper than whole flower.

Step 2: Slow Cook the Weed in Butter

Time: 3 hours

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Materials

  • Small crock pot (1.5 to 2 quart capacity)
  • Reusable basket coffee filter
  • 3/4 c. butter

Instructions

Warm 3/4 c. (1 1/2 sticks) butter in the slow cooker on the lowest heat setting until it is completely melted.

Put the decarbed weed in the reusable filter and place the filter in the melted butter. Steep for about three hours, on low stirring occasionally. The butter will turn murky and green as the THC magic happens.

Turn off the crock pot and let the cannabutter cool for about an hour. The goal is to cool it enough it won’t burn you, but not so much it becomes too thick to strain.

Lift the filter basket out of the cannabutter, letting the liquid drain completely back into the crock pot. If the cannabutter looks disgusting, you’re doing it right. Discard the used marijuana.

There may be fine bits of marijuana and really gross looking milk solids floating in your butter. To strain these, simply pour the cannabutter through the emptied filter basket and into a clean container.

After straining you’ll end up with about a 1/2 c. of cannabutter.

Strained cannabutter looks a lot like guacamole.

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Potent Cannabutter Dosing

The most important thing to keep in mind if you’re new to slow cooker cannabutter or edibles in general: YOUR MILEAGE MAY VARY. Start small, give it a couple of hours to kick in, and adjust as necessary.

Effects aren’t immediate. I usually feel them between 90 minutes and 2 hours after I’ve eaten. If, after only 15 minutes you think “this isn’t doing anything” and you keep eating food with really potent cannabutter, you could end up like the cop who made pot brownies and called 911 because he thought he and his wife were dead.

Personally, I find the cannabutter I make using these ratios to be nice and potent. But then I’m really sensitive to edibles. For example, if I use cannabuter as-is on an English muffin, I will only need a pat about the size of a pea.

How to Portion Edibles

For example, if I make a 9 x 13 pan of brownies with this cannabutter, I will only need a brownie about the size of a mini candy bar (that’s right Mini—the smallest size, not to be confused with her big sister Fun Size).

Since I typically only take weed before bed, a pan of brownies can last 9 months—no exaggeration—saving me literally a thousand dollars over dispensary prices. (Pro-tip: Cut cooled brownies into portions for a full week of edibles, vac-seal, and freeze. I use a FoodSaver.)

Step 3: Use the Cannabutter in Your Favorite Recipe

Time: Varies by recipe

Cannabutter brownies

Cannabutter has a distinct flavor that you might find off-putting, especially if you’re a first-timer. I think it tastes the least offensive in things like brownies and peanut butter cookies.

You can use this crock pot cannabutter in any recipe you want, though, not just sweet treats. If it calls for more cannabutter than you have on hand, simply make up the difference with regular butter.

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When I make a 9 x 13 pan of Cannabutter Brownies, I use 1/2 c. cannabutter and 1/2 c. regular butter.

You probably already know this, but just in case you don’t: you can replace most fats in your recipes at a 1:1 ratio. So you could swap 1 c. of vegetable oil with 1 c. of melted butter (and therefore cannabutter) if you wanted. What I’m trying to say is: you can also turn that boxed brownie mix in your pantry into something SPECTACULAR.

Need something chill to do now? Try Zentangle.

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9 Goals for 2020

9 Goals for 2020

Happy New Year, everyone. Historically, New Year’s Eve and New Year’s Day have not been very big deals to me, but I felt like celebrating today with 9 goals for 2020 if for no other reason than I’m feeling a little optimistic. (Note these are not resolutions I’m doomed to fail, just little nudges for making 2020 more fun than 2019.)

Stream a video game on Twitch

My brother Ryan and I live a few hours apart, but we still manage to get together virtually once a week or so to play State of Decay 2. He and my sister-in-law brought up streaming on Twitch several months ago. The idea has been percolating in my brain for a while, and I want to give it a try. No commitments to anything more than seeing how it goes.

Write a crossword puzzle

With my brain being what it is, I do word and logic puzzles almost every day to try and keep the neurons firing. Recently while working on a crossword with a really weird answer to a horrible clue, I wondered if I could make a better one. Now I’m obsessed with noodling out how to create the pattern of squares, make a functioning grid of words, and write good clues.

Grow marijuana

Though I’ve had a medical license to consume marijuana for about three years, Illinois just made recreational use legal. The govenor is clearing thousands of convictions as we ring in the new year. (Halle-freakin-lujah! More criminal justice reform, please, Governor Pritzker!) We can now grow up to five plants for private, personal use. I have several seeds in my position, and intend to give it a try. No biggie if I fail, but it has the potential to help me save a lot of money. This is one medication that is 100% NOT covered by insurance.

Complete a 100 Things post

I started my first blog on AOL Journals circa 2006, and I made a ton of online friends through that platform. I still keep in touch with many of those bloggers to this day. In fact, AOL J-Land (as we affectionately called it) is how I met my husband Dan.

One of the fun things that swept J-Land back in the day was writing a 100 Things post. It’s where you cobble together 100 facts about yourself and post the list. It’s like an ice breaker for bloggers. I recently and randomly stumbled across the Twitter account of a name I recognized from the AOL days, Kelly Sedinger of Byzantium’s Shores. I saw he still had a One Hundred Things About Me post, and got sucker punched by the nostalgia.

I’m going to post a new one soon. Honestly, I’ve been working on it for a few days already, so it seemed like a good addition to my 9 goals for 2020 list. (Yes, I’m one of those people who writes shit in her to-do list that’s mostly done just so I can experience the pleasure of crossing it off.)

Make new Zentangle videos

It’s been a few months since I’ve created any new content for my YouTube channel, because life is just that way sometimes, you know? But the meditative aspect of creating the art and then watching the time-lapse playback is so good for me. It also seems to be something that others enjoy, because my channel keeps growing. I can’t commit to a schedule for health reasons, but I can promise myself to just make “more.”

Track Swagbucks for a year

Swagbucks is a cash back slash survey website where you participate in polls, submit receipts, watch videos, participate in special offers and other junk, and then earn “Swagbucks” which can be converted to gift cards and PayPal cash. The catch is that they collect your data and make use of affiliate links. But you know, data privacy is for the financially privileged, anyway.

Last year as a casual user, I earned about $150. Which isn’t much, unless you’re broke. In that case, it’s a tank of gas and Christmas presents for the family. This year I want to track how much I make in a full year from January 1 to Dec 31.

For reference, I’m starting today with 355 SB (roughly $3.55 when redeemed). If you want to try it, use my link and we both get 300 bonus Swagbucks if you reach 300 SB in your first 30 days. (FWIW, I got to 355 in just 3 days, so that is very doable.)

Learn Krita and make a printable coloring page

I gathered up the Amazon gift card money I collected and finally purchased this stylus for my computer so I can do some Zentangling and sketching without killing trees or using up all my Micron ink. Krita is the free drawing program I will be using, but it’s pretty complicated and will require setting aside some time to learn. It’s kind of like Photoshop. Except it’s totally free.

I think it would be really fun to draw a coloring page and maybe host a cheesy virtual coloring contest sort of like those ones I always participated in at the grocery store when I was a kid.

Reach 100 Patrons in 2020

My goal for Patreon this year is to reach 100 subscribers. I currently have 29. I chose a people-based goal as opposed to a money-based goal because despite our dire financial circumstances, I really just want to find and connect with people who want to read Who You Gonna Believe and watch my Zentangle videos.

Reach 1,000 YouTube subscribers in 2020

Speaking of those Zentangle videos… 1,000 subscribers seems like a lot, but I’m giving myself a whole year to get there, and as of this writing I’m already at 485. The One Zentangle a Day series I did in 2019 really helped me establish my channel. This year I want to focus on producing higher quality videos. It should be doable now that I’ve got some of the basics sorted out.

So those are my 9 goals for 2020. What are yours? What are you looking forward to in the new year?

Let Me Introduce You to My Workspace

Let Me Introduce You to My Workspace

This is a picture of the end table next to me right now. It’s a little chaotic, I’ll admit. It’s maybe not how I’d keep things if I were perfectly healthy. But maybe it is. I don’t really know. I’m not the most organized person in the world. Anyway, this is the current state of things.

  1. Mountain Dew goes really well with weed. (See #6.)
  2. My phone case/wallet. It’s a really ugly imitation of suede. It’s hideous, but it’s functional.
  3. My only prescription med right now, and it has nothing to do with cancer. (I know, that’s amazing, right?)
  4. The earrings Dan picked up for me three days ago at Meijer “just because”. The are cats wearing witch hats.
  5. The double-sided Sharpie I use to write postcards to voters. One side is fine point. The other side is ultra-fine point.
  6. My MMJ vape. The changes in weather got me all like “OUCH!” I try to remember to take it every day just in case it feels like shrinking my brain tumor. But some days I forget.
  7. Vitamin D capsules. The doctor wants me to keep my levels up, and I just don’t spend a whole lot of time outside.
  8. The Sibley Guide to Birds. If you look closely, you can actually see the bird feeder out there in the back yard.
  9. An almost empty basket of Halloween candy. It only contained a partial bag of treats, but still. I’ve consumed way too much sugar in the last couple of days. (See #6.)
  10. Windex electronics wipes for cleaning my laptop and cell phone screen.
  11. Mary Karr’s The Art of Memoir. I’m using it as a desk reference while I continue writing my memoir.
  12. The Sassy Bottle™. Izzy likes to be a little jerk and scratch at the furniture. Turns out she likes being sprayed with water too, though. So now it’s a game and we’ve taught her to claw the upholstery for attention. Cats, man.
Cancer Ramblings

Cancer Ramblings

I’m exhausted. The kind of exhausted where I’m too tired to get up and plug in the cannabis vape pen that needs charging because I spent all that energy an hour ago making toast with peanut butter and a cup of green tea.

So I’m lying in bed composing a blog post on my phone instead of standing up, and I’ll ask Dan to charge my V2 Pro next time he comes in to check on me.

***

My platelets are low (64 at last week’s count) and I’ve been barfing again. No idea if those two things are related. Also, though I don’t really want to admit it, I’ve been basically bed ridden for a couple of weeks.

It’s not the cancer; it’s the treatment.

After my last round of chemo, I didn’t regain much strength. I mean, it’s always hard, but it seems to be getting harder. Could be the absence of the dexamethasone now. Could be the cumulative effects of the chemo treatments. Could be the shit-ass weather and extra migraines I’ve had this month.

That’s the thing about brain cancer and its treatments. So many potential causes for the add-on problems, and no sure way to identify the cause.

So you just endure.

***

Dan just plugged in the vape for me and told me goodnight. He did Boomer’s voice for him as he pulled the door closed.

“Love you too, Ma.”

“Love you too, Boom!”

“Love you too, Ma.”

(I don’t know. We’re weird. We do voiceovers for our pets. Also I sleep in the guest bedroom. It sucks. Cancer sucks.)

I asked Dan once why Boomer always said “I love you too” over and over, and he informed me that it was because Boomer had to have the last word.

Duh.

***

Anyway, barfing.

I woke up at 11:30 last night and reached for a vomit bag. The combination smell of those vinyl bags, my PB&J, and stomach acid left me heaving long after I’d blown all my chunks.

When the spasming in my stomach stopped, I brushed my teeth for the second time and walked the bag to the garage. I had called to Dan for help, but he was snoring. Hard.

Oh well, he deserves to sleep, I thought.

Unfortunately, I had to turn the hall lights on, and he stumbled in to check on me when I returned. I was sitting on the bed pouting. The dog and cat were right on Dan’s heels, and I commented that everybody had come to console me.

If there’s a bright side to puking in this house, it’s that everyone is curious. You’re never alone.

***

Regardless, I hate throwing up. It’s the worst. And I mostly hate food now too. (I’ve lost 26 pounds since quitting dexamethasone, but don’t worry. I’m still unbelievably fat for a girl who hauls 2-pound vomit bags to the garbage a couple times a week.)

***

I have no wrap-up for this post. I’m just going to try to sleep now.

I Might Owe Dexamethasone a Very Small Apology

I Might Owe Dexamethasone a Very Small Apology

It appears I was a bit hasty in my judgment of dexamethasone. Still suffering after a round of chemo without it, I can now see that in spite of its horrible side effects it was masking some of chemo’s even more horrible side effects.

I won’t go into the full details of my emetic escapades, more for my sake than yours. But I will just say that Activia is off the menu for a few days while I purge my scent memory.

There was some discussion between Dan and I about what to do next, seeing how I spent maybe three hours not in bed this past week.

“You could try taking the dex only during the week you do chemo,” Dan suggested.

I whined something about not wanting to while admitting it wasn’t an unreasonable suggestion. “It was just so hard to quit. I almost think I’d rather suffer some new evil than go through that again.”

For now I’ve decided to take more Zofran, despite the headaches and hiccups. I’ll use cannabis to make me want food and Zofran to keep it down.

At least until the next thing. Because there is always a next thing.

Dexamethasone Sucks

Dexamethasone Sucks

Remember how I’m coming off the dexamethasone? Here’s an update I posted to Facebook yesterday:

As of 8:36 am, I was 96 hours dexamethasone free. But as morning turned into noon, I started feeling sick to my stomach. (I’ve been down this road before, so I had a small lunch of yogurt and 2 cuties and popped a 1/4 mg of dex to stave off the vomiting. You’re supposed to take dex with food.)

“I don’t want to start horking and land in the ER again like I did in June,” I told Dan.

Four minutes later my entire head was in a vomit bag.

So here’s the question: Did I or didn’t I take dex today? Or maybe it’s Schrödinger’s Dex?

While the vomiting has been quelled by a medical cannabis patch, the nausea is lingering. My appetite is at about 6%, but that’s OK for now. I still have a ton of steroid weight to lose. So far I’ve made do with a bowl of Rice Chex, some lactose-free, high-protein milk, and eight Wheat Thins.

I’m going to try real hard to eat some chicken nuggets tonight. Salt and protein have always been my way out of Pukelandia.

Aside from the gross stuff, I’m having major muscle fatigue and soreness. My quads are screaming at me like I’ve been marathon training without taking any rest days, despite the fact I’ve just been in bed whining since Tuesday.

I’m also having some issues with rebound swelling and double vision. Both things to keep an eye on, because my brain could swell, too, without the dex—and that would be bad. And require me to go back on the dex. And we don’t want that.

Dear god, we do not want that.

Granny Walkers and Comfort Food

Granny Walkers and Comfort Food

I had to bring the walker back out today. It’s frustrating, but kind of expected. I’ve taken another step towards coming of the dexamethasone—down from one milligram a day to a half milligram a day.

If you Google “dexamethasone taper” and hit the patient forums that pop up in the results, you’ll see it’s pretty common for the taper to make people feel like hell.

I keep finding out how unexceptional I am in terms of side effects.

Congratulations, me.  And all of this right before I start my maintenance chemo tomorrow morning.

If there’s one thing I’ve learned since February, it’s that I’m not allowed to get completely over one stinky hell before stepping barefoot into a freshly steaming new one.

Anyway, my body is just one continuous muscle spasm right now, and it has been for a couple of days. I’ve tried the cyclobenzaprine I have left over, hot and cold packs, Icy Hot, bed rest, hot tea, meditation. Probably more stuff I can’t remember. All pretty much worthless for this particular problem. My medical cannabis gummies get me relaxed enough to sleep at night, but they are really, really dehydrating.

That’s something I’d like to point out, now that I’ve brought up the topic—marijuana’s great, but it’s not perfect. People who claim it is probably haven’t taken it for brain cancer.

kraft mac and cheese

So anyway, I’ve regressed to the point where Dan has to pretty much do everything for me again. These little setbacks don’t last forever, but they are so frustrating. As it turns out, I actually don’t like being waited on constantly or asking for help with ridiculously small things.

“Could you get me a Gatorade? And pour it in a glass? With ice? And a straw?’

Dan doesn’t mind. In fact, he’s made me Kraft Macaroni & Cheese three days straight. He even went out to buy the janky cheap stuff when we already had Kraft Deluxe in the pantry.

What can I say? My cravings are very specific these days. I want straight macaroni, not elbow. And I want neon orange cheese dust, not runny cheese product from a metallic pouch.

Because standards.

Something’s Squeezing Me, But From the Inside

Something’s Squeezing Me, But From the Inside

Sunday night was…weird. I went to bed early because I was feeling…weird.

Dan came to check on me. “What’s up. You doing okay?”

“No.”

“Well, what’s wrong?”

“I don’t know. I just feel really strange. Like something’s squeezing me, but from the inside. Everything’s heavy. I feel like I can’t breathe.”

Dan tried to push me for clarification, but I had nothing. The sensations were new, and I couldn’t determine whether I was having some kind of panic attack or my worst flare up to date.

Am I panicking? Or am I just so weak I my muscles won’t expand enough for a solid breath?

I could tell he wasn’t sure how to help. “I’ve just been lying here trying to decide if this is worthy of an ER visit, but I don’t figure there’s much point in going if I can’t even explain what’s going on, you know?”

“Yeah.”

Spoonies learn quickly that ER visits are  borderline pointless. Unless you can show the doctor a gunshot wound or… Well, it’s pretty easy to talk yourself out of going. They’re expensive as hell, and the doctor you end up with is a total crap shoot.

Like the one who gave me Mylanta and sent me home when I had a gallstone he didn’t bother to check for. That waste of my time cost me thousands of dollars and several more months of excruciating pain.

***

Ever since my doctor’s appointment on Friday, I’ve been getting weaker and weaker. And it’s not like I had all kinds of strength to start with. In fact, during the strength test part of the visit, she asked me to grab her fingers and squeeze them as hard as I could. I gripped the index and middle fingers of each of her hands and gave it everything I had.

I was thinking to myself, based on my perceived level of exertion, that she was going to say uncle. I pinched up my face and waited for her to tell me to let go.

Instead, she said, “No, as hard as you can.”

***

When I wake up in the mornings, my spasms are worse. I yawn repeatedly, and with each yawn my entire body tenses up from head to toe. The back of my right ear and earlobe are numb. My forearms and hands are mostly numb, but painfully so.

Whatever that means. How is it possible to be in pain and numb at the same time?

Talking triggers yawns, which triggers more head-to-toe spasms. Getting up from the couch—when I can manage to stand up—triggers head-to-toe spams too. I have to wait for the muscle contractions to stop.

Imagine you’re angry and making a fist. And you’re so angry that your arm and fist shakes in tight, tremor-like contractions until you let go of the fist.

That’s what I’m calling a spasm. Only it’s all over my body. And I can’t just think let go, and my body magically lets go. It’ll let go when it damn well feels like it, and there’s not a blasted thing I can do about it.

***

There’s no question the reality of my situation is starting to sink in. If you type the visit diagnosis items from Friday’s appointment (weakness, abnormal gait, clonus, restless leg) into my symptom checker app, you get these results:

symptom-checker

Knowing what I do about my own body, I’m 99.9% certain I’m dealing with multiple sclerosis. But I can’t completely ignore that other possibility. And I’m already conditioned to fear non-answers. If the MRIs (just got them set up this morning and they are scheduled for Thursday) don’t show MS lesions or anything, what then?

***

Thank God for medical cannabis in Illinois. Whether Sunday night’s breathing troubles were directly related to my physical condition and spasms or my overactive, anxious mind, one quarter of a gummy helped.

In a few minutes, I felt the muscles around my chest and stomach let go. I could breathe. And then I feel asleep.

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