Miles for Migraine

Hey you wonderful blog readers! Just dropping a quick note to let you know that I’m walking to raise money for migraine research & care this weekend.

There’s no cure (yet) for migraine disorders like mine, yet the Global Burden of Disease Study indicated that “migraine is one of the main contributors to disability worldwide” (according to Dr. Wijeratne in a Migraine World Summit interview).

The UCSF Headache Center here in San Francisco is one of many, many clinics that are understaffed and generally under-resourced. I waited months to be seen there for treatment back in 2019, and I was in constant pain while I waited.

If you read my blog, you know my journey and struggle. I really hope you’ll consider donating to my walk to raise funds for the UCSF Headache Center, so they can do more research and pay more doctors!

Thanks!

Chronic

This week marks two years since the beginning of my eight-month-long migraine. And it feels like everything about my life changed over that short span of time, from the big picture down to the small details. I could write a novel, I think, about everything I’ve learned.

But blog posts are easier to write, and better for people like me who have limited attention spans. And of all the thousands of things I could say, there’s one thing I’ve pondered the most as this anniversary approaches: the fact that I have a chronic condition.

Chronic migraine disorder. That’s my diagnosis. It’s both a simple and all-too-difficult concept for me to grasp, because my chronic migraine disorder didn’t start out as many chronic conditions do. Most people with chronic migraine develop it slowly, often over years or even decades. I went from having no headaches to being hospitalized with migraines in less than three months.

Things are not as traumatizing as they were then (praising God for that!), but the diagnosis remains the same. Which is weird, because each day has felt like an altogether different challenge than the day before it, but from the outside, the label hasn’t changed.

I’m constantly adding something to my personalized definition of chronic migraine, and sometimes, I get the sweet victory of taking something away. And my poor husband, I’m not sure how he’s tracked with my constantly changing perceptions of who I am and what we’re dealing with. “Chronic migraine” is (and I am, by association) an amorphous pile of incomprehensible goo.

So I can’t fully define chronic migraine, at least not in a way that I’ll still agree with tomorrow. But there are some things I’ve noticed that lie at the core of my chronic illness that haven’t changed very much over two years. These things make up a passable definition, what chronic illness means to me. Perhaps these ideas/themes will help you understand other people with chronic health conditions, but it’s hard to say. I can only speak for what goes on inside this one very sore head, after all.

Chronic illness thing #1: It’s wildly unpredictable.
Chronic illness is the ultimate champion of keeping me on my toes. I can be totally fine one minute and have a migraine the next, without warning. Sure, sometimes my body will give me more notice, but other times, it just doesn’t. So what I hope my friends have come to understand: my migraines aren’t under anybody’s control, and they’re not anyone’s fault. And all my plans come with an at-will cancellation policy.

Chronic illness thing #2: It’s more than one thing, and most of the things are invisible.
I can have a headache all day, but still have a great day. I can have no headache all day, but struggle with anxiety, depression, nausea, dizziness, or fatigue instead. These things can add up to be just as bad, or worse, than a headache. So understanding exactly how I’m doing on a particular day can involve asking a lot of questions, or just giving me extra grace because there’s likely something I’m struggling with that you aren’t seeing. (We should all give each other this sort of grace, no?)

Chronic illness thing #3: It can be really important, or really not.
There are some times when I feel pretty down, often (not always) after I’ve had a few migraines in a row. I need to talk and be encouraged by the people around me, lest I turn into a puddle. But there are other times when I want to blend in and be a “normal” person (if such people exist), even if I’m not feeling well, even if it’s just for a few minutes before I crash and burn. This isn’t avoidance, just acknowledgment that chronic migraine disorder is not all of who I am. Being “me without migraines” for a little while strengthens my soul, helps me cope, and gives me hope that one day, “me without migraines” and plain-old me will be the same person.

So there you go, two whole years of learning, boiled down to three short paragraphs. I hope it’s helpful to you in understanding me, or someone else you love. And if you know someone with a chronic illness, they’d probably love for you to ask what chronic illness means to them. They’d probably also like to have you on their team, even if in a small way. Because believe me, no matter how you define it, chronic illness is no walk in the park!

Introducing, Lucy.

Lucy is a friend of mine. Perhaps you know her? I see her on bus ads and billboards pretty often around here, but it wasn’t until two years ago that we got to know each other. We hit it off quickly, and before long, I was staying over at her place for days or weeks on end.

Lucy isn’t much of a cook–her pizza is especially horrendous, and it once took her three hours to make me a coffee and a muffin. Her taste in decor is austere–all her curtains are disposable, all her chairs are plastic, and all her lights are fluorescent. She even has fluorescent lights in her bathrooms.

But on the plus side, she hangs signs over her toilets, warning you not to stick your hand in them. Not just because that’s gross, but also because Lucy’s toilets have mysterious hand traps, or so the signs say. I’ve never confirmed this for myself, because the signs tell me not to. But the point isn’t that Lucy has spikey death toilets that will permanently mangle you…it’s that Lucy is kind enough to warn you about it. Safety first, that’s Lucy’s motto!

Lucy loves music. Carl Stamitz’s Clarinet Concerto No. 3 and Flute Concerto in G Major are her favorite pieces–the Romanze and Allegro movements, respectively. She plays them for me over the phone all of the time, whenever I call her. In fact, she doesn’t seem to know that any other songs exist. Maybe I should tell her about Spotify. But then again, I’ve completely memorized Romanze and Allegro, so why ruin it now?

I don’t want you to get the wrong impression, or to think that my friendship with Lucy is a one-way street. I do call her quite often, more than I call anyone else, but she calls me a lot, too. Usually during dinner, when my phone is nowhere to be found and I’m chewing on something. That must be when Lucy goes through her weekly calendar, because these calls are always just to remind me that we’re scheduled to meet soon, then she hangs up.

When we do meet, it’s always at her place, and Lucy usually kicks it off by taking my credit card, then telling me I should get a pap smear. She’s a little obsessive about both the credit card and the pap, and I found it odd at first. My other friends don’t tell me when I need to blow my nose, let alone when I need to get a pap smear. But cervical cancer is bad, so is greed. When push comes to shove, I understand she’s got my best interests in mind.

Lucy has a good memory, and not just for pap smears. She remembers large portions of my life in painstaking detail, and sometimes I wonder if she knows more about me than I know about myself. I’ve joked about this with her before. Lucy didn’t laugh.

But there is one thing, just one, that Lucy always forgets: my birthday. She asks me when I was born every time we talk on the phone, and every time I see her in person. She’s simply got no memory for numbers. My big 3-0 is coming up, and I don’t think Lucy will remember to send me a gift. She hasn’t any other year. But to be fair, I don’t remember her birthday, either.

No relationship is perfect, so overall, I feel quite lucky. We haven’t talked since yesterday, and I sense the silence setting in. It’s unbearable. There’s not enough Allegro in my life. I’m lonely without my faithful friend, Lucy Essef.

I’m dissatisfied.

Six months ago, I started weaning off my medications for chronic migraine. What an adventure that’s been, and I’m not even halfway done! If everything continues according to plan, which it almost certainly won’t, I’ll be off my medications by the end of 2021, more than a year after I started this arduous process. And the worst case scenarios–me never getting all the way off my meds, or needing to restart some things I’ve dropped –are still distinct possibilities at this point. The unknowns remain just as unknown as they were at the outset.

With less medication managing my pain, I get migraines from the silliest things nowadays…a long bike ride, a poor night’s sleep, odd weather, food poisoning, and who knows what else. This is entirely unsurprising but also extremely difficult and discouraging. I had hoped my body would “level out” to a better situation than what I’m in right now, though there was no guarantee that would happen. I knew the drugs could be hiding the pain without fixing it. I knew that migraine is considered a treatable, not a curable, condition. But I can still remember my life two years ago, when I had no migraines, and I can’t help but imagine getting back to that reality, that prior version of myself.

In response to this, my doctors would tell me to lower my expectations. I’m setting myself up for disappointment, thinking I can somehow rewind my life. Not all changes are reversible, and I shouldn’t be so unreasonable.

And they’re right, in a way. I need to learn to cope in the day-to-day, and I’m working on that. I’m also working on adding other therapies, supplements, and alternative treatments to help close the gap. (If you were about to suggest I try this-thing-you-heard-helps-headaches, please don’t!)

But at the same time, I think it’s reasonable for me to be dissatisfied. And I most certainly am!

There’s actually a whole lot of space for dissatisfaction in the Christian life. Jesus-followers aren’t supposed to pretend like everything is rainbows and unicorns when the reality is dark skies and thorny circumstances. That would be living a lie.

Jesus was, in fact, very dissatisfied with the state of the world. Why else would he have died for it? Only a clear perception of the world’s brokenness, paired with a real hope for positive change, could drive a person to do something this drastic.

So yes, I’m dissatisfied with where my life is at right now. There’s no truer way to say it. But I’m also not without hope, and I’m not giving up yet. Doctors don’t know how to cure migraines. But God knows how, and He also loves me. So He and I are going on an adventure together, exploring this tension in my life. Maybe he’ll heal me in the process, or maybe he’ll bring about a cure for migraines, or maybe neither of these things will happen. But if God teaches me to trust Him more and more as we go, I think I’ll find a deeper sort of satisfaction that can coexist with all sorts of dissatisfaction.

I know that sounds like a paradox, but not all paradoxes are impossible.

Dogs are lucky because they don’t wear pants.

My dog, Donut, usually waits until I crash onto the couch, exhausted from grocery shopping, to notice I exist. Grocery shopping is my least favorite chore, so I’m really not in the mood to socialize with my otherwise senile, curmudgeonly canine when he keeps me up after a trip to the store. 

The other day after grocery shopping, I was asleep and somewhat curled up on the couch, my legs bent. This arrangement threw off Donut’s usual annoyingness, because he couldn’t figure out how to comfortably “snuggle” with me (a.k.a. steal my body heat shamelessly). So he stepped his front legs (which I call his arms) over my legs and just stood there, his nose an inch from my face. Then, apparently dissatisfied with that attempt, he tried to come in backwards, with just his back legs (as in, his actual legs) stepped over mine instead. 

Have I mentioned that Donut is not a small dog? So it’s not surprising that his corpulence didn’t fit behind my knees, even though he tried multiple angles of approach. He jumped down and laid his head insistently on the small spot of upholstery he desired. He groaned audibly to make his distress clear and did his best poor puppy eyes in an effort to evoke my pity. But I’m over his puppy eyes, I have been for a long time. I know Donut’s ways. He never likes walking as much as sticking his butt in my face during the only ten minutes I try to sleep during the day. It’s like there’s some sort of doggie bat signal plugged into my eyelids.

Grocery shopping really tires me out, no matter how easy I try to make it. I biked for a whole hour the day before getting groceries and needed no nap. Twenty-four hours later, I was done in by pushing a cart around a store. I felt so exhausted that I asked Cory to help me unload the car, only to discover that other than lots of chicken legs, which were on sale, I had only three half-full bags of other groceries. So I brought everything inside before he arrived and asked him to move the chicken from the kitchen counter to the freezer instead (the freezer is, as you might expect, not very far from the counter). This justified him coming upstairs, in my mind.

Donut gave up for a short while, like two minutes, then returned to continue availing himself of my personal space. He squeezed his butt between my kneecaps and the back of the couch. I should note, because my knees were bent, Donut had a good four square feet to work with on the other end, but he settled in this tiny crevice nonetheless.

I wonder if Donut has realized that he’s not the only one in our household who has gained weight during the pandemic. Maybe he used to be able to fit behind my knees on the couch and now he doesn’t, which would explain his confusing antics. One of the great injustices of chronic pain is that ordinary-people problems, like aching joints and gaining weight, don’t pass you by. There is no page limit on your medical record, and what’s worse is there’s not even discounts when you purchase health issues in bulk. When my migraines flare, I often let myself eat anything I want until I feel better. I’ve learned the hard way to keep ice cream and such out of the house, to limit my options in trying times. But I recently took drastic measures and switched to eating salad for lunch until I can fit into my clothes again. 

This isn’t the first time my clothes don’t fit since my migraines started, but it was the other way around before. Just over a year ago, I weighed thirty-five pounds less than I do now. It was a result of being stressed, sometimes having no appetite, and being triggered by many, many foods. Eating out was an impossibility for months because I got migraines from so many basic ingredients. It was simpler to eat roughly the same thing every day, and to eat it at home in the dark instead of out amongst bright, annoying lights (this was before COVID, when dining inside a restaurant was a thing). After a few months of migraines is when I noticed that my favorite red pants didn’t fit, and that I had dropped an entire clothing size. So in late 2019, I took to wearing yoga pants all of the time. I’m such a trendsetter.

What most surprises me, looking back, is how much worse I felt about being underweight than I feel now about being a bit overweight. I’m sure my general migraine misery played into how I felt about myself back then, when I couldn’t wear my favorite red pants, but that’s not the entire story. I remember getting a lot of comments on how skinny I had become, and none of them carried a positive tone. There’s a big difference between a friend saying, “You’re so skinny!” versus them saying, “You’re too skinny!” Every comment was likely well-intended, an expression of genuine concern, but each one always hit me like a ton of bricks nonetheless. 

If my migraines made me gain weight instead of lose it, I think I would have heard fewer comments on my appearance. Our society has established norms around obesity, to the extent that most people understand that telling someone they’re fat is usually not okay. How come, then, it’s okay to tell someone they’re skinny, but not good skinny? I had less control over my weight when I was skinny than I do now that I’m not-so-skinny, so these comments were, to me, just another form of needless reminder about how unhealthy I was.

Speaking of things I can’t control, after a few more minutes of Donut’s careful maneuvering, I somehow ended up perched on the edge of the couch and the dog ended up stretched out all over it, surrounded by all of his favorite toys. I was awake, grumpy from grocery shopping and being chubby, and I had a headache. And to make matters worse, I was thinking about salad. Do walnuts pair well with tomatoes? Does an apple salad with dried apples and apple dressing break some unwritten rule about how much apple you can put in a single bowl?

While I wondered these things, Donut was asleep, probably dreaming about chicken legs. 

Unknowns

Sigh.  I didn’t mean to abandon this blog, but here it lies, no update since August.  

I hope you understand, it’s not because my migraines miraculously stopped that I stopped writing.  It was because as one week dripped into the next, slowly, like a bag of saline, things changed.  Quitting my job last July was the most recent huge loss migraines caused in my life, but out of it came an adventure, a discovery of who this person is, the person that lives in my body now.

There is so much I could say to wrap things up, though I’m not sure if this blog has run its course fully or not.  I feel I’ve learned so much, looking back, and I want to tell you these things, but I don’t have words for it all yet.  But what you probably want to know, at least, is how I’m feeling nowadays.  “How are you doing?”  That infamous question. 

Things are still complicated.  Some days are great, some days are hard.  I’m in the middle of the very difficult process of weaning off some of my medications.  Because before this all began, before the incessant stabs and the constant headache, before the hospital stays and acupuncture and pills galore, back when things were “normal” and I was “healthy,” we had in mind to start a family.  Now, I’ve been on some medications for over a year, and though migraine is most common in women who are of childbearing age, very few migraine medications play well with pregnancy.  That’s a bit of a bummer, isn’t it?

We don’t know if I’ll ever manage to get off all of my meds.  It’s very much an open question.  Each step I take to wean off comes with pain and exhaustion, and doubts.  The doubts come in cold, fierce waves.  And the memories are difficult, too, the ones I have of darker times, of despair and hopelessness.

Perhaps you’ve had similar experiences with your open questions and unknowns.

I’m taking it slow, and showing myself a lot of grace, and learning more about what it means to have faith that God loves me in the nitty gritty, in the struggles that ebb and flow but are always coming, always looming.  This sort of faith can feel like hard work, it’s not natural or warm and fuzzy.  Looking back helps, seeing how much God has healed me, and how I’ve changed.  Thanking him for that whenever I can, whenever I remember.  And looking forward helps, too–reminding myself that God has a future for me, even if I always have migraines.  And I’d rather trust that future to an omniscient, loving Father than to little, messed up me.

Thanks for reading, friends and strangers alike.  Long live the yellow grippy socks!  

Joy Deposits

A while back, I wrote a post bemoaning the phrase “How are you?”.  I was surprised by how many people agreed that this simple question can be near impossible to answer for those struggling with depression, anxiety, chronic pain, or any other invisible illness.  But “How are you?” isn’t the only phrase that gets me stuck in the conversational mud of migraines.  There’s also this one:

“You look great!”

In this past week alone, three different people have told me this, either on a Zoom call or from six feet away with a mask covering half my face.  If I look great in such socially distant circumstances, I must look simply radiant up close.  My husband says I do, but he’s smart and would never say otherwise.

This is a relatively new experience, being told I look great.  My monster migraines were complicated by food for a long while, so I did lose weight while also losing a lot of sleep and general health.  And when I was in the hospital, I got so sick that I turned grayish green–or so I’m told.  I didn’t see myself during the grayish green days, but I tend to imagine that I looked like a Borg.  And I don’t mean like Seven of Nine, with subtle implants, spandex, and lots of makeup.  I mean a Borg with slimy skin and cables coming out of their head.

I do look a lot more like myself now that I don’t have a constant migraine.  My skin is clearer, my eyes are less baggy.  I’ve moved my old clothes from the trunk back into the closet.  Friends have noticed a change in my complexion, and they say I look great, or they say I’m glowing.  

But sometimes, I’m barely coping.

On the bad days, the migrainey days, I wish I could turn grayish green again.  I want to bridge the gap between how I look and how I feel.  I want someone to notice and say, “Gosh, it looks like you have a migraine.  Thanks for waking up, you go-getter!”  But my pain is invisible.  I look great. 

It’s possible to glow on the outside while fighting monsters on the inside.  But I’ve found a way to exist in the conflict, the tension between what is seen and what is unseen.  When someone says I look great when I feel terrible, I try to remember–they are expressing joy.  There will be days that I rejoice, too.  I deposit their joyful words into my soul, like galleons in a treasure chest.  And when the migraine leaves, I go out in the sun.  I see the blue sky and the colorful flowers.  I ride my bike.  I celebrate.  I cash in.

Swallow

There is a paper grocery bag on our kitchen floor, next to the trash can.  It’s been there for a year, visible to anyone who comes in the house.  Most people don’t notice it at first, but on their way out, this inconspicuous brown Safeway bag seems to always catch their eye.  It first started drawing attention when it was half full, and now it’s filled to the brink of overflowing.  With empty pill bottles.

I’ve recently made a dent in my migraines.  The victory was long-awaited, but that doesn’t mean I spent the time waiting around and doing nothing.  When people see my bag of pill bottles, I notice this realization dawn on their face.  I’ve had to take a lot of medication to get to where I am now.  I am still taking lots of medication to maintain my quality of life.  

Migraine medications are my frenemies.  There are two classes: acute and preventative.  

The acute medications are what I take for a migraine flare.  Almost all of these pills list similar possible side effects, which include drowsiness, dizziness, and headache. Yes, you read that right.  And even when I decide to take a gamble and use acute medication, headache experts recommend taking them a maximum of three days a week, because otherwise there’s a risk of getting medication overuse headache.  

The other class, the preventatives, are what I take every day, or some of them every month, to lessen my headache frequency in the long term.  These are usually more friendly than the acute meds, when it comes to side effects.  But, if my migraines went away tomorrow and never came back, it would take me many months to slowly wean off the preventative medications in order to avoid causing a medication withdrawal headache.

And this is the life of a migraineur, it’s a choose-your-own-adventure game!  I can take too many pills if I want a medication overuse headache, I can take too few and have myself a medication withdrawal headache.  Or, I can keep everything just right and have the headaches I already have every day.    

Yesterday, I emptied the bag from the kitchen and counted the pill bottles.  My dog enjoyed sniffing each one and knocking some of them over, like dominoes.  Upon realizing none of the bottles contained food, however, he got bored of my counting and left.  But here are quick stats I gathered using my pill bottle bag, and a bit of math.

Since getting migraines, I’ve swallowed…

  • Over 100 bottles’ worth of pills (I think we recycled some before I counted, so this is the minimum)
  • 1 pound of gabapentin (my main preventative med, lovingly referred to as “gabba gabba”)
  • 18 different supplements
  • 29 different prescription medications

So I am, I think, fully qualified as a walking, talking pharmacy!  Remind me to add that to my LinkedIn.  But, my new work experience aside, I felt that each bottle I counted gave me a bit more perspective.  I recalled all  the failed treatments, all the different doctors, all the diagnoses and guesses.  All the grit and patience, all the prayer and sorrow, it took to get to where I am now.  This paper bag is, in a way, a strange time capsule of a strange year.  So I’m going to put it back in my kitchen, as a provocative decoration.  It’s modern art.

Eight Months

Since last year, I dreamed of what it would be like to have no 24/7 headache.  I pictured the moment it stopped and saw myself crying tears of joy.  I imagined telling all of my friends and family as soon as it happened, then being magically transported to some verdant hillside to raise my hands to the sky and sing “The Sound of Music”.

My headache broke for the first time about a month ago.  That’s right, an entire month ago.  I don’t know exactly when it happened.  I don’t even know the day.  I don’t know where I was, or what I was doing.  I didn’t cry tears of joy.  In fact, I didn’t even notice the first time it broke, or the second, or the third.  The only reason I realized it happened at all was my self talk changed over time.  Before, it was either “my headache is bad” or “my headache isn’t too bad”.  But eventually, I occasionally heard myself thinking, “my headache came back”.  And if something comes back, that means it was gone.  It’s a strange thing, I only noticed the absence of pain by it returning to me again, at least at first.  Over time, I noticed the pain free moments more consciously.  They were plain-old, awesomely normal moments.

So, there you have it, I COMPLETELY MISSED the ending of my eight-month-long headache, I didn’t tell many people about it, and I still have headaches and migraines to boot.  It feels like I missed the nice, clean ending to this blog-saga that you’ve traveled with me.  I was so looking forward to that “breaking” story that I now cannot write.  But chronic pain isn’t that simple.  It doesn’t just end; it hangs on for dear life and you have to detach it, one gnarled finger at a time.  That means my 24/7 headache coming to an end isn’t the end of this road, nor the end of this blog.  

But it is a big step, and a bigger transformation than I could have imagined (even without me singing loudly in the hills).  It’s the transformation that comes from hope.  I don’t mean the kind of hope that expresses want or desire (“Oh, I hope it doesn’t rain tomorrow”).  I mean the kind of hope that is based on knowing something will change.  

I’ve had lots of migraines this year, almost every flavor.  And each time I stopped having an acute attack, I’d still have a headache.  Every.  Single.  Time.  More pain was all I had to look forward to.  It’s no wonder I spent most of my time with migraines in bed, in the dark. I felt I had no choice but to rest, no other way to save up enough physical and emotional stamina for the headache that would persist even when the migraine ended.  No choices, no options.

But today, I have another migraine.  It started yesterday.  I chose to sleep for a while, I chose to write and walk and sit outside, I chose to use an ice pack and not push myself.  And I chose to be happy, and to enjoy what I could, because I know a day without pain is coming again soon.  Perhaps even tomorrow.  

These are the choices I make when I hold on to hope, knowing I can make it back to zero pain.  And the certainty of even brighter days is enough to keep me walking.

The Diagnosis*

The problem with this blog is it’s too…niche.  I write about chronic pain, and hospitals, and doctors, and needles.  But I also write about marriage, and phone calls, and walruses.  What genre is this?  Fantastical memoir?  A mostly useless advice column?  Medical nonfiction comedy? No genre will ever fit, not without an asterisk.  So I think this blog will eventually fade into the dusty corners of the internet because it’s hard to describe, and also because it has no click-bait stock photos.  

I have the same problem with describing my headaches.  There have been so many questions from loving friends and family, who want to know what I’m experiencing because they care.  And I’ve received similar questions from triage nurses at the E.R., naggles in hospitals, and specialists in their offices: “What is the problem?”  Every time, I’ve wanted a concise answer to give.  And every time, I feel like there isn’t one.  Because each week, sometimes each day, or even each hour, of the past year has come with its own unique adventures.  I’ve spent some hours curled up in a ball, unable to feel my limbs and collapsing under the pounding of an invisible hammer.  There have been days and days of dizziness and nausea, and weeks worth of stabbing headaches above my left eye.  I’ve spent a total of 25 days in a hospital and another 25 million days waiting in waiting rooms.  For an hour here or there, I couldn’t move my hands or feel my tongue.  (Who knew that was a thing?)  Vertigo was an on-again-off-again friend for about three months.  I’ve lost count of the number of sleepless nights.   And through it all, I wished I couldn’t feel my head, as I’ve spent nine months with a 24/7 headache (which I named Draco).  

I have a niche sort of headache problem, don’t you think?  This is why I, like so many others with chronic illness, had a lot of trouble getting a diagnosis at all.  My first doctor thought I had a rare infection, then I switched to another doctor who diagnosed me with panic attacks.  Two months went by before a friend from church guessed I was actually having migraines (thanks, Thao!), then a month more before finding yet another doctor, who agreed, and astutely observed that I was having bad migraines that didn’t really…end.  

So I received a diagnosis that fit, sort of: intractable migraines.  This means, essentially, bad and long-lasting migraines.  But some intractable migraines are over in three days, not continuing for more than three months, like mine.  Some intractable migraines can be managed at home, without needing to use more free hospital toothbrushes and eye masks (and graham crackers and juice, and grippy socks).  So, I was told I had bad migraines, intractable migraines, but I felt like the diagnosis desperately needed an asterisk.

My husband and I set our sights on a more suitable diagnosis, constantly on the lookout for one that felt just right.  Abdominal migraines seemed like a good fit early on, though most of the neurologists I talked with didn’t agree.  New Daily Persistent Headache (NDPH) was on the table for a long time, since I developed a 24/7 headache pretty soon after getting my first migraines.  When the headache flare-ups became more stabby, this opened up possibilities like primary stabbing headaches and hemicrania continua to layer on top of NDPH, like a headache ice cream sundae.  Hemicrania continua was a frontrunner in my mind, because Latin medical diagnoses sound nice and serious.  I imagined telling the triage nurse at the ER, “I have hemicrania continua with NDPH” instead of “I have a bad migraine,” and finally getting placed higher up on the infamous waiting room totem pole, which is, I think, controlled by a coalition of triage nurses and the mafia.  But before it was clear if I had hemicrania continua or not, my headaches changed again.  And then again.  And again.  No more specific diagnosis stuck for long enough to end up anywhere but in my husband’s Google search history, which was growing larger and larger by the day.  

Finding a “better” diagnosis became an obsession, a purpose in a life that was consumed by something that felt much worse than a bad migraine.  My husband took the lead (as I couldn’t spend a lot of time looking at screens) and sunk deep into scientific papers, WebMD articles, and who-knows-what-else.  He kept looking and kept finding nothing better to describe what was happening to me.  

Days turned into weeks, weeks turned into months, and I kept telling loved ones and my blog readers the only thing I still knew for sure: I was having bad migraines*. *. *  I wanted to put the asterisk everywhere, even in conversations I wished I could say, “I have bad migraines, asterisk.”  It seemed like the only way to make clear that my diagnosis didn’t describe what was wrong in a way that people could really, truly understand.

So that’s how I felt, over and over again: misunderstood.  I lived life with an asterisk, wanting to connect with my friends and family but staggering under the weight of experiences and feelings I couldn’t explain.  I clung to the fading hope of a better diagnosis, the hope that somewhere there was a WebMD article which could bridge the gap between me and the people around me.  So many people with rare or chronic medical problems are desperate for the perfect diagnosis, as I was.  Some struggle to get a diagnosis at all, and find it understandably devastating when a name for their problem continually eludes them, or takes a long time to find, like it did for me.  I think it’s partially because when you’ve experienced anything that is too complex for words, it’s easy to feel misunderstood, and feeling misunderstood can also feel lonely.

I wish I could tell you the diagnosis journey ended the way I wanted.  But we never found the perfect Latin name to summarize all of my problems, and they didn’t name a new syndrome after me, either.  (Though I never asked, and I do wonder what the response would be if I asked.  I’ll take suggestions in the comments!)  But I, like so many others, am instead making peace with having a very niche medical problem and no perfect diagnosis.  That means I’ve stopped living life with an asterisk.  When someone asks me why I am on medical leave from work, or what I’ve been up to this year, I reply, “I’ve been having bad migraines.”  Sometimes I’ll say more, sometimes I won’t.

And I know people will misunderstand, or at least not fully understand, what I’ve been through.  Doctors and nurses will continue to misunderstand, too.  They’ll never know what “intractable migraines” means to me.  You won’t, either, even though you just read this niche blog post on my niche blog.  But it’s ok.  Because I’ve discovered that in the absence of understanding between people, there is an empty space where other things can grow.  Things like unconditional love, and friendship that is given in spite of imperfect knowledge.  This is why, since letting go of my need to have a perfect diagnosis and to be perfectly understood, I’ve grown closer to many people without even trying.  Because it’s possible to receive love in spite of my asterisks, and to love others in spite of theirs, too.