Christmas Eve was horrible. I was capital-D Depressed because of, well, all the things, and my pain was an 8.5 on a scale of 1-10. Dan decided we should put Boomer in the back seat of the car and go hunting for Candy Cane Lane, a local neighborhood here in Urbana where the homeowners get serious about decorating with lights.
“Can you slow down a little when there aren’t other cars?” I asked. “It takes me so long to get my eyes to focused.” Dan tried to accommodate my secret nystagmus, vertigo, and tinnitus sauce, but it was pretty hopeless. And what was supposed to be fun started making me kind of sad.
Then we passed a house with red, white, and blue lights in the shape of an American flag, and I just started bitching. “Twenty bucks says the couple that lives there spent the last four years telling everyone who ever criticized 45* or his policies not to make everything political.”
I tried to enjoy the other displays. Some tacky but cheerful. Others just tastefully simple and elegant. But after thirty minutes of craning my neck at moving targets and flashing bulbs, I was forcing myself to take deep breaths and wondering if I was going to need one of the barf bags in the glove compartment. Then we passed a house with the candy canes blinking so fast…
“I think I’m going to have a seizure,” I said to Dan.
I wasn’t making light of anything when I said it. I felt so weird just then.
After 20 or 30 minutes of riding shotgun, I couldn’t move my neck. It just locked up on me. My muscles were so tight I wanted to cry. They were pinching nerves so tight I had lightning bolt pain running down the outsides of my legs to my knees. I stumbled through the door and headed straight for bed, asking Dan if he could find me the bottle of Meclizine that my palliative care doc had prescribed as an as-needed rescue med for when the dizziness got to be too much.
My history with prescription drugs being what it is, I’d never taken one. But Christmas Eve I was so desperate for relief, I decided to throw one down.
Much to my relief, it worked. The room stopped spinning around me, the tinnitus quieted, and the nausea faded. O, Holy Night! I feel asleep watching a man restore an old railroad emergency lamp on YouTube.
Christmas morning, I woke up feeling weirdly optimistic. My neck wasn’t in good shape, but it was in better shape. I took it easy and decided to look for adaptive silverware on the internet. I popped open an OT/PT website that had been recommended to me and started browsing everything from paraffin baths to finger splints when I came across a shop listing for the CranioCradle.
“Oh yeah,” I thought to myself. “I bought one of those on Amazon back when everyone was telling me I had fibro.” (It was recommended in one of many books I read about fibromyalgia. I don’t remember for certain, but I think it was in The FibroManual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor.)
Anyway, seeing the CranioCradle made me think maybe I should try it again. After brain surgery I was cautioned to be very careful where my head an neck were concerned. So I put the thing out of sight and kind of forgot about it. But seeing it again—and on the website of a medical device supplier—made me think it might be time to dig it out. Close to four years had passed since my brain surgery, and anyway it was more ergonomic and comfortable than the headrest on an MRI table, and I’ve had my head in plenty of those.
I spent three hours with my neck cradled on Christmas Day, and have been using it for about 30 minutes, three times a day since then. And the muscles are finally starting to loosen. I honestly thought I’d die with my rock-hard trapezius. That one day they’d cremate me and find a solid block of forged steel covered in ashes. But the CranioCradle is doing something.
It’s like a foam roller in that it puts pressure on the muscles until they kind of snap out of this permanent spasm. The difference is there’s no motion involved. And if it can unlock my muscles? Let me just say that my brain surgeon (the man who pulled them out of my head and laid them to the side so he could biospy my tumor) opined, “I’ve never seen anything like ’em. Those are serious muscles.”
Now, neither the meclizine or the CranioCradle are Christmas miracles in the sense that I’m suddenly cured of dizziness and pain. The miracle is in just finding relief for a few moments a day.
The neck, shoulder and back muscles (I position the CrandioCradle in different locations along my spine, because I’m perpetually tweaked from the base of my head to the top of my butt crack) are susceptible to painful spasming all the time, because tension is my body’s first reaction to the tumor-induced nerve pain. So I have to spend a lot of time using the cradle. More time than most people have in a day, I’d wager.
But my mood has improved so much just having a few moments a day not writhing in intolerable pain. I have hope and ideas for the new year. And I’m optimistic and full of ideas and the desire to create things. I guess I just felt compelled to share a bit of good news.
And now that I’ve been hunched over my laptop typing and I can feel the clenching kicking in, it’s time to turn on the heated mattress pad and melt some muscles.
If I don’t write and update post again before the New Year (and I don’t think I will) have a Happy New Year. Stay safe. Be kind to strangers. Hug your people. I hope in 2021 you will have everything you need.
As a patient who was horribly misdiagnosed (they told me I had fibromyalgia but it was really a brain tumor) for more than two years, I learned a thing or two about how to get your doctor to listen.
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 Won’t Your Doctor Listen?
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. 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.
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 Misdiagnosis Story in a Nutshell
For me personally, 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 in your area, and sheer exhaustion from your 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.
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 fibro 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 Time Off from Seeing Doctors
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 the Bullshit You’ve Internalized
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 on Twitter, for example, who are constantly sharing what they know. Seek them out.
And if you’ve got a story to tell, questions to ask, or tips to share, please comment on this post for the benefit of others. We’d love to hear from you!
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Facebook tells me that on this day three years ago, Dan and I attended the Dave Matthews Band concert at Summerfest in Milwaukee. I remember it well. It was raining and only like 50° F outside. We could see our breath.
Fuckin’ Milwaukee, guys.
Anyway, we had lawn tickets but no chairs or blankets, because we weren’t anticipating the rain or the cold, slippery grass. So I stood for the entire show. For HOURS. I wiggled and danced for a bit, walked around a little. Then stood still. Then shifted my weight from one leg to another. Then started the routine all over again.
At the end of the concert, we had to walk back to the car. My legs were tired. The car was parked several blocks away, and I remember saying to Dan, “My legs feel weird. Like I can’t walk. I don’t know if I can make it all the way to the car.”
I had no clue what was happening to me at that time. I just thought it was exhaustion and that I was really and terribly out of shape. (Even though my height, weight, and activity levels were still leaning toward the decent side of healthy because I’m stubborn.)
At that point, I had already started seeing doctors about weakness and fatigue and a bizarre sort of limp that came and went, but I wouldn’t get a fibromyalgia diagnosis for about three more months.
I wouldn’t learn I had a brain tumor for a couple more years.
I did make it to the car without aid that night. But it was hard, and I remember stifling fears that something was really wrong with me. I remember plopping in the passenger seat and sort of lifting a leg into the car because it just wouldn’t.
Anyway, I wanted to take a moment this morning to say I’ve done a lot of really hard things with a tumor in my head—a tumor that I knew nothing about. Wonder what else I can do now that I know and have doctors that know how to fight it.
Whew! The past 72 hours have been utter shit for me. I’d explain why, but I’m going to just wave my Tumor! sign and leave it at that. There’s something else I want to write about now: my fibromyalgia misdiagnosis.
Did you know that May is Brain Cancer Awareness Month and Fibromyalgia Awareness Month? (Actually, May is the awareness month for a lot of things, but these two things have been just about my entire life since October 2014, so they’re getting top billing on my blog this May Day.)
I mentioned in a previous 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.
There’s a special kind of emotional baggage I picked up on this 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.
I have no qualms about oversharing when it comes to my well-being.
So here’s the deal. On February 2, I had fibromyalgia. Then on February 3, I had a six-centimeter tumor on my brain stem.
On February 2 the general consensus among my 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 healthy person.”
At first I was like, damn I am one tough cookie.
And then I was like, wait just a goddamn minute here.
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.
Medical professionals (not speaking of specific doctors right now, just medical pros as a community) who were previously dismissive of my pain 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.
Still, 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 FUCKING YEARS.
(My Spoonies are grabbing 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.”
That’s all the motherfucker had. I must have been doing it wrong.
Now that I have proof of this brain tumor and I’m 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 diagnosis of being an attention-seeker, a pill popper, or a conjurer of fake maladies.
OMG! I just heard. How are you?
The answer to this one changes every 5 to 30 seconds. You know that graphic about recovery not being a straight line? That is applicable to just about everything in life, and medical procedures are no exception. I’m glad to report that after 71 days away, I am at home in Urbana. The overall trend is toward “better and better” but I have my days where it seems like everything sucks and I’m taking steps backward. I’m not shy about griping during those moments. I promise to let you know when things are bad and I need a little cheerleading.
Are you done with radiation and chemotherapy?
Sort of? The radiation is done unless future MRIs indicate there’s a need to zap the tumor again. Chemotherapy and I are, as Ross might say, on a break. There will be more Temodar—brain cancer chemotherapy in convenient pill form—in my future, but it will only be once a week every month. (One week on, three weeks off, lather, rinse, repeat.)
I imagine that my body will tolerate that schedule much better than the initial chemotherapy regimen, which was every freaking day for five weeks. Right now, doctors are saying to expect to do the one-week-a-month plan for 6 to 12 more months. Actual duration will depend on how the tumor responds and how the rest of my body tolerates continued treatments. You know, my mileage may vary and stuff.
I want to help. What can I do?
- Tell me jokes. Laughter is a great distraction.
- Carry on about your business like things are normal. When someone tweets how miserable their allergies are making them feel, I am not thinking “Yeah, but I have cancer. Count your blessings.” Rather I am thinking, “Better you than me, sucker!”
- Donate to my YouCaring fundraiser. But only if you can. My medical bills are piling up, and as of today (4/24/17) I’m preparing for an appeals battle with my health insurance provider. They have denied a claim that exceeds $100,000 for the genetic testing that determined the best treatment course for my tumor. I’m not adjusting my fundraising goal, however, until I know for sure I’ve been screwed. I could win the appeal. Right?
What about the Fibromylagia diagnosis?
It’s still on my medical records as a thing. But my opinion, knowing what I know now, is that the rheumatologist who diagnosed me with it in late 2014 was lazy and just fucking WRONG. My thoughts on this topic are pretty complex, however, and I plan to do a more in-depth post of my experience. For now, just know that if you troll or harass anyone diagnosed with fibro I will cut you. It’s real.
You went to St. Louis for treatment?
Yes, at the recommendation of my primary physician (I will praise her more in a future post) I went to Barnes-Jewish Hospital for formal diagnosis and treatment. The hospital campus includes Washington University Physicians and Siteman Cancer Center. And every one of the people I was in contact with there was absolutely phenomenal—ER admissions staff, nurses, doctors, transport staff, nurse assistants, more doctors, residents, interns, food and nutrition employees, housekeeping, valet staff, radiation oncology techs, MRI techs, CT techs. I am seriously getting a little teary thinking about how well I was treated and how much confidence I had in the people taking care of me. I don’t know any of their salaries, but I know that none of them are making what they are worth.