doctors

Migraine Monday: Depression Sucks

Depression sucks.

My neurologist took me off one of my migraine medications this summer. We scaled back slowly, but the withdrawal was still awful. I couldn’t sleep, and yet all I could do was sleep. I wasn’t hungry. Food was boring. I lost weight. My motivation was sapped, my energy drained. I cried.

All of this makes sense, I reminded myself. Withdrawal is hard. It’ll get better. 

Withdrawal is over. It’s not better.

My head is holding out, for the most part. I’ve had no major vascular episodes. I’ve had some tingly fingers and lips, a couple visual auras. At least two days with olfactory hallucinations. But no pain. I’ve lost, I would guess, 10 pounds, which my doctor told me to expect. I don’t weigh myself though…that’s opening a whole new can of worms, but my thinking on the issue provided a clue into how depressed I was getting (more on this for Fit Friday).

You see, depression sucks. It lies. It sucks my energy, saps my strength. It stalls my progress, regresses my growth. It plants dead and dying thoughts in my head and distorts my view of reality.

Worst of all, it makes me believe I deserve to feel as shitty as I feel.

It’s just withdrawal. You’ve felt worse. You were suicidal back in junior high, and at least it’s not that bad. Sure, your sleep is disrupted, but at least you’re sleeping more than four hours a night, and you’re getting naps. You’re not eating much, but it’s summer, and you don’t get terribly hungry in the summer anyway, and your roommate is making you eat dinner at least, and your pants fit better now don’t they?? The structure of the school year will snap you out of my funk. You feel okay. Okay is okay!!

Okay is not okay. I deserve to feel better than just “okay” for the rest of my life.

And here’s the kicker, at least for me: at least three people very close to me are depressed right now. One of them, I counseled and helped get back to the doctor to re-start medication. And things are looking up. Another one? We remind each other to shower and eat when a really bad day happens. Because sometimes someone needs to remind you to shower. And the third? That’s my sister. We’ve been doing this together for over a decade. I can see it and help it in other people, but for myself?

Self care is hard. Because depression lies.

So I called my neurologist this week. I started with him. If he wants to stick with the medication change, I’ll go to my regular doctor and see about my depression/anxiety medication. I don’t deserve to live this way, sleeping on half a bed while the other half is covered in laundry and library books, eating only waffles and coffee, counting my days in naps and avoided phone calls. Okay is not okay.

No one deserves to live this way. My medication withdrawal has passed. Time to stop withdrawing from life.

Lend Me an Ear

For the last several years, I’ve experienced intermittent stabbing pains in my right ear. I don’t remember when they started, but I know they’ve occurred at least as long as I’ve lived in Idaho, which is pushing seven years now. Sometimes the pain wakes me. I grip my ear, on the verge of tears. I tug on it, trying to pop my eustachian tube. I massage my jaw, trying to loosen that a bit. I wait for the pain to subside before I can sleep. It’s awful.

My right ear bothers me during the day sometimes, too. I get a marble-sized, subcutaneous bump between my jaw and my outer ear, but somewhat behind the jaw bone, so it’s not noticeable unless I open my mouth and put your finger on it.  The pain seems to center there, but the discomfort is in my middle ear, too. Whenever I have a problem, I go see our school audiologist. She looks in my ear canal, runs a tympanogram to check my middle ear pressure. If I have an ear infection, I can at least bring some preliminary documentation to the doc-in-a-box, and they are duly impressed that I have access to an audiologist at my job.

A few years ago, the pain was worse than it had been and was lasting longer than usual. The school audiologist, amazing as she is at her job, didn’t know what to tell me. I was talking about it at my church one evening, and my pastor asked me a few questions about it. Prior to his life in the church, he had been an ENT surgical first assist in the military. We had talked about ears and audiological jibberjabber many a time, but this was the first time my own ear had been the topic of conversation. He asked if I had a recurring pimple in that area. I did. On or near my tragus, every couple months, usually around the time my ear pain would flare up. He said it sounded like a branchial cleft cyst, something he had excised on many patients, and suggested I see an ENT.

I made an appointment.

I did a little cursory internet research on them leading up to my appointment. If that was, in fact, the problem with my ear, mine was minor compared to some of the gnarly pictures I found online. The majority of cases seemed to occur in the neck. The majority of cases seemed to be pretty sizable. Of course, gnarly pictures are the cornerstone of Google images. Anyway, it seemed feasible that this could be my problem: aggravation of the facial nerve, a pimple that wasn’t a pimple but a cyst, flare-ups when I have upper-respiratory infections.

I never had a chance to tell the doctor any of that.

When I got into his office, I started explaining my ear trouble. He interrupted me and asked me to open my mouth. He felt along my jawline and outer ear area. He asked me a few questions and looked inside my ears, pronouncing them normal. By this time, of course, my flareup had subsided. I tried to explain that. He asked me to open my mouth again and said he was going to put his fingers in my mouth. He did, and pushed up behind my last molars. I nearly shot out of my chair. TMJ, he said.

I tried to explain that I thought it might be more than that. I’ve always believed in advocating for my health and working with my doctors. He interrupted me again with a lesson on ear anatomy, but not really. It was watered down. I work at the deaf school. I’ve taken basic audiology and know the anatomy. You could use more technical language for this conversation. He could, but he didn’t. Then he started talking about the jaw, again with the paternalistic tone. I know what the temporomandibular joint is. My mother worked in the dental field for 30 years and used all the technical jargon around the dinner table. I had braces for eight years to fix my bite, with the idea that we would prevent TMJ dysfunction. Obviously that trick inside my mouth is something. Is it possible I have two things going on here? He laughed at me. Told me to get a night guard. Then I left

I didn’t want to say it’s because he is a man in a field dominated by men. I didn’t want to assume it’s connected to the hints of his southern drawl still lingering after three decades in Idaho. Basically, I didn’t want to believe that he was dismissive and condescending because I am a woman. But in the grand scheme of things, when doctors interrupt their patients, male doctors interrupt more often than female doctors, and female patients are interrupted with greater frequency.

I wish I could say my chiropractor was more respectful. But I can’t. Not really. He wasn’t overtly condescending, at least. He let me finish what I wanted to say and he gave me credit for “listening to my body.” But when I told him the diagnosis, he was equally dismissive. Everyone has a TMJ. Everyone has two of them. That’s really the most ridiculous diagnosis. Next time it flares up come here and I’ll get you all fixed up. Then he adjusted my derby injuries and sent me on my way.

So the ENT was dismissive because he had the credentials and knew better. And my chiropractor was dismissive because my ENT had mainstream credentials, and I should have just known better. And here I sit, literally years later with a chest cold that turned into a head cold and another nasty flare-up of the ear from hell.

Yesterday I rounded up my students and we all went to the audiologist’s office. They’ve all been there countless times for broken earmolds or new batteries or their annual hearing evaluation. This was the first time they were not the subject (hooray for scrambling power dynamics!). I explained my problem. The audiologist has her scope hooked up to a television screen, so everyone got a good look at my very angry tympanic membrane (eardrum) and external auditory meatus (ear canal). We compared it to my very healthy-looking left ear. Then we checked my middle ear pressure: normal. The kids joked about my hairy ears and asked if a spider laid eggs in there. But most importantly (to me, anyway) she took me seriously and modeled an equitable doctor-patient interaction.

So, my ear still hurts, seven years later. And you know what? It could be TMJ. It could be a branchial cleft cyst. And the icing on that whole cake happened when I got the bill from the clinic. I owed far more than my $20 co-pay. I had done my homework, though, not only on my symptoms, but also on my in-network providers. I called my insurance company. Yes, they told me, my provider was in-network. But that diagnosis code was not covered. What? That’s a thing? I’ve heard of treatments not falling under an insurance plan, but a diagnosis?? I didn’t even go to the doctor for my jaw–how was I supposed to plan for an out-of-network diagnosis?! My appointment was covered up until the point he uttered and documented the letters TMJ. After that, my appointment went from $20 to $tupid. With a side of suspected sexism to boot.

And now you’ve just had an earful. Welcome to the club.

A Number of Things Not to Say to Someone with Chronic Pain

Happy Migraine Monday.

I spent the entirety of last week with a migraine. I powered through the work day, went home and ate whatever paltry dinner I could muster, and crashed. By Thursday, I was spent. I had the foresight to write my blog posts during recess and lunch, because I knew the evening would provide no writing time. Sleep tends to take priority over writing.

My migraines ebb and flow. Sometimes I have an aura, sometimes I do not. Sometimes my eyes are photosensitive, sometimes only the right one functions correctly. All of them have this in common: They diminish my ability to function at full steam. And unless I say something, they remain invisible to all but those who are closest to me: my students, my closest colleagues, and my dearest friends.

Sometimes the facade cracks, and someone else sees a brief glimpse of how hard I’m working to keep going. The secondary language arts teacher in the Blind/Visually Impaired department saw me pause to take a collecting breath before Romeo and Juliet practice on Thursday and gasped. How do you function like that?? I told her I just keep moving. If I stop moving, inertia takes over. As long as I don’t stop, I don’t have to think about it.

Thursday night, when I finally stopped, inertia took over. If anyone is wondering how long I sleep after a week of working with a migraine, the short answer is “18 hours.” The long answer is “18 hours, only waking once to text my boss and my carpool to tell them that the sun (not having risen) was already too bright and I was staying under the covers. I missed the only Friday I was supposed to work this month.

I used to be punctual. I used to follow through on plans and commitments, eagerly volunteering for committees and extra duties at work and church. I helped build a roller derby league as the president, spending every weekend stomping through town for sponsors and practice spaces and new skaters; I haven’t done a thing in a year. I just can’t. Every plan I make now has a footnote: plans may be canceled or altered with little to no prior notice because blood vessels are fickle. 

The thing about migraines is that the only people who understand them are neurologists and other people who have them. They aren’t just headaches and more than fibromyalgia is just some aches and pains. These are debilitating conditions.

A wheelchair user shouldn’t have to apologize for a building’s barely-meets-ADA accessibility if she is late for a meeting. A deaf patient should not have to apologize that the interpreter provided for his appointment is late, unprepared, or otherwise not up to the task of providing the services needed at a medical appointment.

I am tired of apologizing for my blood vessels.

This brings me back to Friday’s text messages, and, really, every text message or email I’ve had to send and conversation I’ve had to cancel plans due to a migraine. As I mentioned last week, my auditory processing takes a huge hit when I have a migraine. And my anxiety spikes. Phone calls have been one of my anxiety triggers since middle school, and the added strain of slow processing does nothing to help that situation. Text messages are what keep me tethered to the “normal” world.

In the spirit of Everyday Feminism’s 7 Things to Avoid Saying to Pregnant People and 7 Racially Coded Phrases That Everyone Needs to Stop Saying About Black People, (which are among the very few listicles that actually teach me something!) I give you my list:

A Number of Things People Need to Stop Saying to Migraineurs (and probably to other people who have chronic pain)

1. Oh, it’s too bad you’re canceling, because you’re missing [blank].

I want to throw my phone when I get this message. I’ve already cringed my way through the screen light assaulting my retinas to send you my cancellation. Chances are I already know what I’m missing. And, frankly, I’m hyper-aware of what I am missing. The collaboration time with my colleagues? Coffee with a friend I haven’t seen in a month? You can bet I’m as disappointed as you are. You don’t have to point out how disappointed I should be. This has been going on for over a year now, I’m well aware of how much it sucks.

Alternative: I’m sorry to hear that. I hope you are on your feet soon. Or just a Thanks for letting me know.

2. You look like hell.

Yes, I know. I feel like it, too. To be honest, coming from the right person, I don’t mind hearing this. It means that someone knows how hard I’m trying to power through the day. But other times, it means I’m not faking it as well as I thought I was, which just makes me sad. Let me have my illusion sometimes, k?

Alternative: Can I get you some coffee?

 3. You look a lot better than yesterday!

Really? Geez, I must have looked awful yesterday.

Alternative: Can I get you some coffee?

4. Have you tried [blank] for treatment?

Unless you are my primary physician, my neurologist, or a fellow migraineur, your suggestion might make me laugh out loud. It’s not that I’m trying to be rude. It’s just that when I’ve been to the urgent care clinic to get shots of painkillers in my hips and it still takes 4 days for the migraine to subside, your nutritional shake sounds a little silly in comparison. In church last week, there was a group of us discussing the different antidepressants we’ve tried over the last decade, our dosages, the side effects we’ve had, what works best about them. It is a conversation that would be completely foreign to someone who has never experienced a life with depression. And if someone had joined our conversation and said, “Well, I read that if you just eat more bananas, it really helps with the winter blues,” we probably would have stared at that person with our jaws slightly agape. Not even on the same playing field. That’s how I feel when someone suggests putting a cottonball full of lavender on my windowsill.

Also, migraines already rule my life; I don’t want every conversation to be about my new antiepileptic drug. And once you ask me, I’ll just keep rambling and I’ll probably tell you about how the migraines affect my IBS, too. So before you ask, make sure you actually want to know about my treatment. And then think about the fact that some migraine patients have menstrual migraines, and then ask yourself if you really want to insert yourself into such a personal conversation between me and my doctor.

Alternative: Seriously, if you are really curious about my treatment, ask yourself why you want to know. I’m usually an open book. That doesn’t mean you want to read it. You’re better off just giving me some coffee.

5. Have you tried a detox?

Yes, I already pooped today. Next.

6. [Missing meetings, losing your voice, doctor’s appointments, etc.] is really impacting your job performance. You need to leave your home life at home.

I know. We know. When I was going through my divorce, I felt scrutinized when I had an off week. And I admit I had some pretty off weeks. What I didn’t know was that through my work’s insurance, I could have had five free counseling or therapy sessions that could have helped in the aftermath and reorganization of my life after my husband and I split up. That, right there, was the perfect alternative. Those same sessions could help with the depression that has resurfaced as a result of these migraines.

Other Alternatives: anything that involves talking WITH instead of talking TO is a better choice, in my book. Because we’re adults, right?

7. Well, at least it’s not [blank].

No. Just no. You do not get to use my condition to reinforce your concept of disability hierarchies. When my friend James was in end-stage kidney disease and on dialysis, people would attempt to console him with such platitudes. I have been on the receiving end of this “encouragement” as well. My migraines are debilitating. Full stop. Food allergies and Celiac disease are life altering. Full stop. Don’t compare us. Don’t rank us. Just don’t. It’s not a comfort. It’s ableist and it’s damaging.

In summary, don’t be a jerk. If you don’t know what to say, ask me how I’m doing today. Ask me if I need anything. And if all else fails, bring me coffee. Seriously. My neurologist said so.