Things Don’t Have to Get Worse

Things Don’t Have to Get Worse

I’ve only taken two 1/2 pills so far, but I feel different inside. Couldn’t say for sure if it’s the hope or the hydroxychloroquine, but damn. I want food. I feel connected to my memories. I don’t feel like I’m as packed-too-painfully tight in my own skin.

That’s the thing about chronic pain. Just the slightest bit of relief changes everything while your body struggles to understand what’s going on.

Sometimes when the pain inexplicably recedes, panic takes over and the anxiety cranks up. I wonder if I’m truly feeling better or just malfunctioning more. 

It’s funny to ponder those things after the fact; I feel silly for worrying when I should be revelling. It’s terrifying to speculate in the moment though. When I’m all, “But I’m not ready to die yet.”

I don’t like my pain, but I’ve gotten used to it. And sometimes it’s difficult to leave abusers. No one needs to understand that for it to be true, least of all the abused.

When brain cancer feels less life-threatening than pain reduction, though, that’s how I know I’m fucked up.

Dan sat at the foot of the bed this morning, holding a big mug of coffee in his left hand and patting my shin with his right. And when he got up and walked to the kitchen, I thought: Wait just a goddamn minute. There was no extra jolt of pain when he touched me.

Who’s life is this? Who’s body did I wake up with by mistake? Don’t tell her I have it. Please.

The meds aren’t supposed to work overnight like that, so it’s probably just good weed, good sleep, and the revelation things don’t have to get worse.

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

Patient’s Log: Avise Lab Results

Patient’s Log: Avise Lab Results

The first set of Avise lab results (checking for lupus) is negative with caveats. My 1:640 speckled ANA persists, and there’s a positive result on a C3 complement component, but I don’t know what that means.

On a scale of -5 to +5 (with -5 being “you’re fine” and +5 being “dude, that’s so much lupus”) I am a -.4. just barely to the negative side of the section of the lupus results graph labeled “indeterminate.”

Stares at camera in unamused side eye.

Look, I don’t want to have lupus, but I do want to know how to fix this, and I’m a little worried I’m going down the road to Nowheresville all over again. This diagnosis crap is forever taking.

My worrying about inconclusive results is probably premature. There are outstanding tests from other labs to come back. Plus, the follow-up with the rheumatologist—who knows way more about what this all means than I do. But I know my body historically likes to cause undetectable problems for me.

How much longer is this going to go on? How many more useless tests and procedures and doctors’ visits are in my future?

I know it’s better for me not to imagine worst-case scenarios. I also accept that I’m pretty bad at staying focused on the present when Right Now is a giant, immotile shit show full of chronic pain and fatigue and swollen lymph nodes.

At least this time around I have results and visible symptoms that doctors can’t ignore. I am being taken at my word, too, which I thought was all I wanted. I want relief too though.

I’m never satisfied.

Best Methods for Making Cannabutter

Best Methods for Making Cannabutter

Cannabutter, the cornerstone for cannabis-infused edibles, is the key ingredient in many culinary delights. Whether you’re a seasoned cannabis connoisseur or a cancer patient like me, mastering the art of making cannabutter can be helpful.

I’ll cover my two favorite methods for making cannabutter: stove top and slow cooker.

Small slow cooker with reusable coffee filter lifted over it. The filter is dripping cannabutter back into the crockpot
Making cannabutter in mini slow cooker.

Choose Quality Ingredients

Like anything you cook, bake, or steep, quality matters to your tastebuds. Select high-quality cannabis flower with the flavor profile and ratio of THC to CBD you prefer. However, if you’re on a budget, shake will always get you where you’re going.

I also recommend using unsalted butter so you’ll have more control over taste and sodium content. Not everyone has perfect blood pressure.

Decarboxylation

Before infusing cannabis, it must undergo decarboxylation. This process, done simply by heating your cannabis, activates cannabinoids like THC and CBD.

Spread evenly ground cannabis on a parchment-lined baking sheet and bake it in the oven at 250°F (120°C) for about 30 minutes.

If you don’t decarb cannabis first, you will probably be disappointed with your cannabutter.

Stove top infusing can be done on any oven range.

Stovetop Method

  • Place the butter and decarboxylated cannabis in a pot over low heat (gas or electric).
  • Cook on low for 3 hours, stirring occasionally.
  • Strain the mixture through a mesh strainer, reusable coffee basket filter or cheesecloth.
  • Cool and store the cannabutter in an airtight container in the refrigerator or freezer.

Slow Cooker Method

  • Melt the butter on low heat.
  • Steep decarbed cannabis in butter on low for 3 hours using a filter, if you prefer, for easy straining.
  • Cool and store cannabutter in an airtight container in the refrigerator or freezer.
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Dosage Control

Start with a small amount of cannabis, an ounce or so, and gradually increase the dosage as needed. If you’re like me, you’ll want to take notes, as everyone reacts differently to different potencies.

Keep in mind that the potency of homemade edibles isn’t a hard science. You may need to tweak how much cannabis you use depending on the strain, age, and type of cannabis you choose.

Storage and Usage

Store your cannabutter in an airtight container in the refrigerator for up to two weeks or in the freezer for longer-term storage.

Don’t forget to label the container clearly to avoid confusion. If you’re using a clear container for storage, you’ll notice it’s distinctly green color. (It looks like very smooth guacamole when I make it the way I like.)

How to make cannabutter: comparing cooled cannabutter to guacamole in the refrigerator. Both are the same shade of green
After steeping, cannabutter will take a greenish hue.

When using cannabutter in recipes, you may need to adjust your recipe according to portion size and desired effects.

Experiment and Bon Appetit!

Making cannabutter is a little bit science and a little bit art. Don’t be afraid to experiment with different strains, infusion methods, and recipes to find what works best for you. It’s perfect for baking brownies, simmering sauces, or just spreading it on a toasted English muffin.

These are the best methods I’ve found for making cannabutter. Which is your favorite?

This post contains affiliate links.

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.)

Don’t Let The Screen Door Hit You, 2020!

Don’t Let The Screen Door Hit You, 2020!

Welcome to 2021, everyone! It’s 32 degrees Fahrenheit and pouring sleet in Urbana, Illinois this fine New Year’s morning. The dog has already thrown up on the carpet, and I feel like there is a hole in my forehead above my left eye that’s exposed to the wintery cold. It’s an icepick headache kind of morning.

A New Year of Bullet Journaling

But I will not be daunted! I have plans for this New Year, and I will do my best to set them in motion today. Starting with the list I created for myself for the day in my new Bullet Journal.

I have made a couple of videos already about my new bullet journal on my YouTube channel (Archer and Olive Subscription Box Unboxing and January 2021 Bullet Journal Setup) but just in case you haven’t seen them, here’s the gist: I’m chronically ill and bullet journaling partly to get more done with less confusion but mostly to show myself what I can accomplish with a tumor in my head.

(By the way, I really love my Archer and Olive stuff, and I was given a referral code. If you use my link as a new customer, you get 15% off of your first purchase.)

A New Year of Coloring

For the next 365 days, it is my plan to color a GPI (general pain index) diagram every morning. I’ll be using AutoDesk Sketchbook (it’s free to download and a great program if you can’t afford Photoshop or Illustrator) so that I can just open a new file every morning, assess my pain, color in the general pain index accordingly, and tuck that information away for future reference.

Maybe I’ll learn something new about what makes me pain worse or better. Maybe I’ll be able to help my doctors understand me better. And maybe I’ll just get into the habit of being mindful of my body first thing in the morning and learn to take better care of it. Who knows what the end result will be, but I’m eager to find out.

Here’s my first day of GPI coloring. I just grabbed a diagram I found on the internet like the ones they hand out at the doctor’s office and saved it as a .tiff file. The color range I’ve chosen is snagged from thermodynamic images I found online as well. The difference is that instead of them representing temperatures like red equals hot, blue equals cold, red equals the worst pain (8-10 on the pain scale) and blue equals the least pain (1-3 on the pain scale.) Purple is zero, meaning no pain.

Colored coded GPI index of the pain levels I am feeling. Pain is most intense in my head, neck, and shoulders.

I made this diagram about two hours ago when I first woke up, and it is already outdated. Chronic pain is such a dynamic thing. When I first woke up severe pain covered about 20 percent of my body. Now we’re closer to 80%. To the point my hands are getting numb and there’s a dark red strip of red across my lower back now—about where the blue and green section meet on the posterior image above.

Dear God. Dan just took this picture of the gas grill on the patio that we regretfully forgot to cover at the end of grill season. I am going to be nursing a lot of aches today, and so I cut this blog post short. More later. Happy New Year, guys.

Metal gas grill covered in ice with knobs frozen in place and icicles hanging off of it.

How to Get Your Doctor to Listen

How to Get Your Doctor to Listen

As a patient with chronic pain who was undiagnosed and then misdiagnosed (they told me I had fibromyalgia but it was a brain tumor) for years, I learned a thing or two about how to get your doctor to listen to you.

Going through life with a misdiagnosis—or no diagnosis at all—is as hard to bear as whatever’s ailing you. Not everyone is born a self-advocate. It’s something we must learn and practice.

So here’s what I’ve learned. I sincerely hope it can help you too.

Why Your Doctor Isn’t Helping

It may be that your doctor, though well-intentioned, isn’t picking up on what you’re telling her. Or maybe you’re not communicating as clearly as is needed. Or, you know, maybe your doctor is just an asshole. (I’m telling you some of them are.) For me, it was a little bit of everything.

First, let me assure you that if you are currently facing this struggle, there’s a good chance it’s not your fault. There’s also a good chance you’re a woman. Doctors not listening to female patients is a thing, and the problem of sexism in health care is long-running and systemic.

According to Prevention, for example, women are 50% more likely than men to get a wrong diagnosis after experiencing a heart attack, and hysteria wasn’t removed from the DSM until 1980.

Nineteen-freaking-eighty!

But as the world can attest, cutting ridiculous junk from a manual doesn’t automagically remove stigma and prejudice from a profession or a populace. From psychology to surgery, health care is still plagued by crap assumptions that undermine the care of women.

And it’s not just the old white guys who are guilty of perpetuating harm—women doctors do it to women patients, families and friends do it to people they love.

We. Do. It. To. Ourselves.

My Chronic Illness Misdiagnosis

For me, the trouble started because I was a woman in my thirties presenting with chronic pain. It was generalized, meaning I hurt everywhere not just my elbow or my neck. And because the pain prevented me from being active, I was also gaining weight.

Before a single drop of blood was taken, a nurse practitioner told me I probably had fibromyalgia. I was tested for arthritis and a handful of autoimmune issues straight away, then referred to a rheumatologist the following week.

When the blood test results were wholly unremarkable, the rheumatologist presumed me to just be a pudgy, complaining woman in need of antidepressants.

Unsurprisingly, he officially diagnosed me with fibro, a condition with a unique and horrifying stigma all its own. And when his (mis)treatment plan failed to help me, he put the blame squarely on my shoulders. His demeanor toward me turned hostile, he communicated with me like I was an ignorant, troublemaking child, and he was outright belligerent when I asked him questions.

How dare a uterus-having technical writer ask if maybe Cymbalta wasn’t The Answer.

That’s when I knew without a doubt my rheumatologist was a lazy stinking misogynist, which brings me to my first bit of advice.

Tip 1: Fire All the Assholes

Yes, I know what I’m saying is very difficult to do in a lot of cases. Restrictive insurance networks, a limited number of doctors and specialists in your area, and sheer exhaustion from your chronic illness can make finding a new doctor all but impossible. But your health is the thing, and you can’t protect it if you keep leaving it in the hands of an asshole.

Cry because it’s hard and unfair. Absolutely do that. But then remember that you don’t have to solve the problem in one day. Promise yourself to look for a better option and jump at the opportunity when you find it.

Tip 2: Expect Struggles with Good Doctors Too

Not all my doctors were so lazy and horrible, but by the time I was ready to give another doctor a try, Dr. Asshole had already done his worst. The wrong diagnosis stuck to me like toilet paper to a shoe.

He was given the benefit of the doubt at every subsequent doctor appointment I had for the following two and half YEARS, and at least a dozen more MDs and PAs and NPs tried their best to persuade me I really did have fibromyalgia after his misdiagnosis.

It’s maddening if you think about it too long, but medical professionals—even fired ones—are always presumed to know more about being sick than the people who are sick. You’ll need to mentally prepare yourself for this reality before every appointment.

Tip 3: Take a Break

Meanwhile, I continued experiencing symptoms that didn’t really fit with fibro. The unexplained haunted me, and I got sicker. I surfed WebMD and Dr. Google and tried to diagnosis myself. When I asked doctors about the things I’d learned, it didn’t go well. If I wasn’t ridiculed on the exam table, I was politely ignored.

There were days when I felt like I just couldn’t do it anymore, so I didn’t. I took time off from going to appointments and even scheduling appointments until I recovered enough strength to deal with more heartache from doctors—people I was taught to trust with my life. I told myself I’d go again when I had the energy to communicate without bursting into tears.

And, yes, I did break down a few times. It’s inevitable, dear human. Don’t beat yourself up about it like I did.

Tip 4: Ask To Rule Out Diagnoses

I had infinitely more productive appointments when I stopped asking “Could it be X?” and started asking “Can we rule out X?” I don’t see why such a subtle change should matter so much, but it did.

Doctors were less likely to see me as a difficult, self-diagnoser and more likely to see me as a diagnostic partner when I asked if we could rule something out instead of confirm it. In fact, no one bothered to order a single MRI until I asked, “Can we rule out MS?”

Folks, that first MRI is how they found my brain tumor. Or, as I see it, how *I* found my brain tumor.

Tip 5: Recognize Internalized Bullshit

We can be our own worst enemy when we take in and internalize bad messages from external sources. Sexist and ableist ideals can ooze out of us without our realizing it. We can be gaslit by medical pros without seeing the harm because we’re taught to treat them as authority figures or saviors instead of trained diagnosticians paid to do a job.

Mull it over for a bit and see if you’ve fallen into traps that affect your ability to self-advocate.

  • Do you hear yourself as a reporter of facts or a complainer when you tell a doctor your symptoms?
  • Do you think all your problems would go away if you could just lose the weight?
  • Do you always think you’re sick because you’re depressed and not depressed because you’re sick?

That asshole rheumatologist I mentioned before? He’d only ever seen me fat and just assumed I was lazy and overeating. He had no idea that less than a year before I was running 5Ks on the treadmill or completing a Jillian Michaels’s Shred workout in my basement five times a week.

Still, I had to fight like hell not to let him gaslight me. He nearly had me convinced I was fat and lazy and my pain was imagined.

Tip 6: Take Someone with You

I’m as independent as the day is long, and I’ll tell you I hated bringing my husband to appointments with me at first. Not because I minded him being there, but because IT SHOULDN’T FUCKING BE NECESSARY. (Ahem, sorry. This will always be a sensitive subject for me.)

However, when I couldn’t put my own underwear on or get myself out of the bathtub anymore, I relented and asked him to join me at my next appointment. Being stubborn about it might’ve killed me, looking back on it. Anyway, having a man in the room changed the way all my doctors behaved. Some definitely more than others.

Turns out it would later become absolutely essential for Dan to attend my appointments. The point is that I probably should have asked sooner than I did, given how the world works.

Tip 7: Connect with Other Patients

I know there are patients out there with different perspectives who have learned things I haven’t. I encourage you to seek them out. There’s an entire community of doctors and patients online who are constantly sharing what they know. Seek them out.

And if all else fails—and sometimes it does—try weed.

Fibromyalgia Misdiagnosis: Surprise, It’s a Brain Tumor

Fibromyalgia Misdiagnosis: Surprise, It’s a Brain Tumor

Whew! The past 72 hours have been utter shit for me. I’d explain why, but I’m going to tap my Tumor! sign and leave it at that. There’s something else I want to write about now: my chronic illness and my fibromyalgia misdiagnosis.

Did you know that May is Brain Tumor Awareness Month and Fibromyalgia Awareness Month? (Actually, May is the awareness month for a lot of chronic illnesses, but these two things in particular have been just about my entire life since October 2014, so they are getting top billing on my blog on this lovely May Day.)

Fibromyalgia: Misdiagnosis?

I mentioned in a previous blog post that I believe fibromyalgia was a misdiagnosis for me as opposed to a comorbidity. As I have discussed many times with family and friends, I am mostly overjoyed to have an accurate diagnosis and a real plan to get better.

However.

There’s a special kind of emotional baggage I picked up on this chronic pain path, and the only way I know to heal from it is to put it out in the universe by sharing it on my blog—where my family, friends, and even complete strangers get to read some of my most intimate thoughts.

Article: Ultimate Guide to Helping a Loved One with Brain Cancer

I have no qualms about oversharing when it comes to my well-being, in case that wasn’t already abundantly clear.

So here’s the deal. On February 2, 2017 I had fibromyalgia. Then on February 3, 2017 I officially had a six-centimeter tumor on my brain stem.

On February 2 the general consensus among my numerous doctors was that I wasn’t eating right or exercising enough. If I were, I’d experience improvement and maybe even remission of some of my symptoms.

On February 3 the general consensus among my doctors was “Holy, shit. You shouldn’t be able to do that” or “No wonder your body can’t walk, breathe, sleep, digest, or stabilize your heart rate and blood pressure like a person without a brain tumor.”

At first I was like, damn I am one tough cookie.

And then I was like, wait just a goddamn minute here.

Misdiagnosis Bottom Line: I felt the same!

I want to point out that from a purely physical experience, there was no discernible difference for me between February 2 to February 3*—even though in that 24 hours, my list of symptoms was suddenly more than validated. I wasn’t just making stuff up or being stubborn about diet and exercise, and it the fibromyalgia misdiagnosis was total crap.

Medical professionals (not speaking of specific doctors right now, just medical pros as a whole-ass community) who were previously dismissive of my chronic pain symptoms were suddenly losing their shit over how believable my reports of chronic pain and disability were.

And this is a point that I really want to drive home, so I’m going to repeat it:

The physical experience of living inside this tired, broken body didn’t change one iota for me in that time. All that changed was who believed me.

And somehow I went from being a whining, complaining exaggerator with two X-chromosomes to a human being who really had been experiencing unrelenting level-eight pain for TWO AND A HALF YEARS.

(I am so angry thinking about it! I might get over it one day, but not this day!)

charlie_brown_pain_scale

(My Spoonie friends are grabbing the box of tissues right now. They are empathizing so hard.)

(Others might not quite understand just how much emotional damage was done. That’s okay.)

It makes me angry that I wasn’t taken seriously. It makes me sad that treatment (and possibly relief) could have come just a little bit sooner for me, but instead I spent months homebound.

The lazy-ass rheumatologist that was a little too eager to diagnose me with fibromyalgia in 2014 fought me over my symptoms and complaints of weight gain, insisting that I wasn’t exercising enough.

When I told him that I’d been tracking my steps, walking to and from work, walking three laps at the park after work every night, and using my FitDesk and hand weights at home and was experiencing physical decline instead of improvement, his response was “Well, you need to start out slower and build up.”

SERIOUSLY?

That’s all the motherfucker had. I must have been doing it wrong. Could be that fibromyalgia was a misdiagnosis.

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Now that I have proof of this brain tumor (grade 2 Astrocytoma, can’t remember if I mentioned that) and I am recovering from surgery, chemotherapy, and radiation therapy, I hear admonishments not to “overdo” when I tell the doctors and nurses that I’m walking without mobility aids or putting in 30 minutes (on the lowest resistance setting, for the love of god) on my FitDesk as I try to recover.

If you don’t immediately know why both of these experiences fill me with boiling rage, I’ll tell you: NEITHER VALIDATES THAT I KNOW THE PHYSICAL LIMITS OF MY OWN DAMN BODY.

And yeah, the anger that comes with that weasels its way into my waking hours from time to time. You got a problem with that?


*I implore you to think about this before you accuse someone with a fibromylagia (misdiagnosis or diagnosis) of being an attention-seeker, a pill popper, or a conjurer of fake maladies. It hurts us all, and keeps the counterproductive stigma alive.

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It Isn’t Fibromyalgia After All

It Isn’t Fibromyalgia After All

Welp. It isn’t fibromyalgia.

Dan and I were leaving the clinic after my doctor’s appointment Friday. I was hobbling with my left arm hooked around his elbow and my right hand gripping my cane. I was so exhausted, I wanted to stop and take a nap halfway to the car. The only thing that kept me going was my desire to get out of the razor-sharp wind.

“Did you hear her?” I asked. “She said ‘this is not fibro.’ I kept it together in there but I wanted to cry.”

***

The past week has been dreadful for me. I’d-rather-do-aeorbics-in-a-pool-of-peanut-butter level dreadful. I’d spent so much time not doing anything in order to save a few spoons, that I didn’t realize I couldn’t do anything, even if I wanted to.

Dan had to bring me clothes, help me rinse the shampoo out of my hair before my appointment, and search the house for my comb. (The comb was in the dining room, where it had been since we unpacked after holiday travels in December. It’s always wash and air dry for me.)

After every chore, I’d have to stop a few minutes and rest.

Wrap a towel around my head. Sit on the toilet with my eyes closed. Brush my teeth. Sit on my bed. Get dressed. Sit on the couch and try breathing a little deeper. Put my shoes on.

By the time we were on the interstate, I was dizzy and willing away a panic attack. (For the record, most times the mental anxiety doesn’t come until after my body starts freaking out.)

***

“Your pulse is 120.”

“That seems high, doesn’t it?” Dan and the CNA both agreed with me. I was sitting upright, but had just walked down the hallway seconds earlier. (I’ve been saying for months that my autonomic processes are screwy. I was appropriately concerned, but not surprised.)

Next, she put the cuff around my arm and in a few seconds announced that my blood pressure was 174 over 110.

I gasped. “Ohmygod. That is really freaking high—the highest I’ve ever had—but I guess it explains why I am so dizzy.” I was also seeing floaters, but I didn’t bring it up. I was focused on willing myself not to pass out.

“Yeah, it’s pretty high,” she agreed. “Earlier this month it was better, though.” She pointed to my records on the monitor, referring to the day Dan pushed me in the wheelchair to my sleep consult. “I’m going to come back in 15 minutes and take it again, okay?”

When she came back, it was down to 132/90, and I was feeling more stable.

***

The doctor eventually came in, and the three of us discussed the issues that had been of most concern to me recently: the inability to move my leg, my worsening weakness, how I walked like I had mad cow disease, and my inability to stand up on my own—at first after a bath, but now also after showering with a shower chair.

“What about getting up off the floor?” she asked.

I looked at the sterile floor of the exam room. “There’s no flippin’ way,” I said. Please don’t make me prove it. The thought of trying to get myself up off the floor…

She took my word for it, but asked if she could watch me walk. The three of us went into the hallway, and I began my slow hobble down the hallway with my cane in hand.

“Are you going to fall?” she asked?

“I think I’m OK for now with the cane.” I wasn’t really confident, but I needed her to get a decent picture of what was going on with me.

As I made my way back to them, my leg muscles were utterly exhausted after only about 20 steps. I asked her about ruling out MS.

***

Next, Dr. S asked me if I’d sit on the exam table. I shakily climbed the single step and tried to lift my butt up with my core muscles while my palms were planted on the cushioned part of the table. It was a struggle of epic proportions.

When I was finally seated, knees bent and legs hanging over the edge, she started a physical examination that included testing the strength of different muscle groups by having me push and pull against her.

Next, she started hammering reflexes. When she tapped my left knee, my leg swung wildly out and then back in. My heel slammed against the metal base of the exam table. It was loud and echo-y and sounded like I’d just lost the game of the year and was kicking lockers in a self-loathing rage.

“I’m sorry!”

The three of us had a good chuckle, and she said not to worry or try to minimize any of my reflexes. She finished up with her little hammer.

Then the weirdest thing happened. She grabbed my left foot, moved it up and down quickly a couple of times, and then held it in a flexed position. My foot went spastic, pulsing in the same repetitive motion for several seconds until she let go. It happened with my right foot too, though not as pronounced.

Clonus.

***

I’ve been reading up on MS and watching YouTube videos for weeks, so when it happened I already knew it had a name. I didn’t know, however, that I had this sign. It felt really weird, voluntary muscles acting involuntarily.

She said I could step down. “This stuff can’t be fibromyalgia,” Dan said.

The doctor agreed. “The muscle weakness, clonus, gait abnormailities, and the inability to move your leg that you reported last month—this isn’t fibro.”

You guys, joy washed over me in a wave from my head to my toes when she said that. Then she added, “If you talk to others with MS, you’ll probably hear a similar story. They’ll tell you that for ten years they dealt with inexplicable symptoms while doctors looked at them like they were crazy.”

I nodded my head in agreement. 2005. The vision loss. The pregnancy test. Doctor I-Don’t-Think-It’s-a-Stroke.

***

She ordered MRIs of my brain and cervical spine, and recommended I keep any appointments I have. She believes the sleep study will still be helpful. Plus I now have two neurologist appointments on the books, one with INI in Peoria and one with someone local.

“They’re far enough out you can cancel if one or the other isn’t needed, but you don’t want to be waiting to get back on the books.”

***

I’m convinced it’s MS, though there are some other possibilities. However, getting that diagnosis could still be a long, tough road. I’m trying to prepare myself for inconclusive MRIs, just in case. I am the queen of negative test results.

If you’re interested, here’s a quick explanation of how MS is diagnosed and what a challenge it can be.

See also: Fibromyalgia Misdiagnosis

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