Napping & Coloring

It is both depressing and fitting that I write this post from bed.  It’s depressing because I felt GREAT yesterday (or as great as one can feel while having a 3-month-long headache), then today I was rudely awakened, at 3 in the morning, by a migraine flare.  It’s fitting because this post is about rest. 

Rest has been my worst nightmare for many years.  I don’t know why, but I can get so annoyed with sitting still, no matter what form it takes- napping, watching Netflix, coloring, playing a game, reading a book.  Especially if I’m in my house, doing something so astoundingly unproductive borders on impossible.  There is just so much to do to keep myself busy, I don’t understand the point of keeping intentionally not busy.  

Even so, you can occasionally catch me watching a movie (as long as it’s not a Marvel movie, or any action movie, or a stupid comedy, or a scary movie) or playing a board game (as long as it’s not one of those board games that has a billion rules and lasts for hours).  There is little hope for my social life without enjoying movies and games, after all. But napping and coloring…these are my arch nemeses. Napping and coloring are the proverbial hampster wheels of adult life: you’re going solo and getting nowhere.  

When I first started getting headaches, I thought I’d find coloring fun and relaxing, so I chose to color some things for my friends.  As it turns out, it felt odd to be nearly thirty years old and giving someone a picture of flowers that you colored. Did I expect them to hang it on their refrigerator?  Or maybe just throw it out? I ended up telling everyone that they had my permission to go home and immediately dispose of my thoughtfully colored pictures. Much to my chagrin, most everyone hung them somewhere prominent in their homes that I see every time I come over.  

So it is of course the case that napping and coloring are two of the only things I can do on my bad days.  Especially when those bad days involve migraines (versus getting slammed with medication side effects, or my body being worn out from constant headache), I can’t look at screens or focus on anything for too long and I am suddenly relegated to spending the day on a Natalie-sized hamster wheel.  At least I’ve learned to stop giving out the finished products from my coloring books, so that I don’t have to continue being reminded how weird my life is whenever I go to a friend’s place. And I can trick myself into napping if I cuddle with my stuffed Dory the fish.  

Maybe you enjoy doing some or all of the aforementioned “restful” activities and as you read this post you’re thinking, “Get a grip, Natalie!  I’d kill to have as much time to rest as you do!” Resting is built into our calendars, it’s what weekends are for. Heck, resting is even in the Ten Commandments- the Jewish Sabbath, the weekly day of rest from work.  

So, the concept of resting seems universally and historically accepted by people as “a good idea,” and I won’t argue that. But control is something that people hate losing, universally and historically.  Control is something I lose quite often right now, and it’s also what this post was about all along. There can be days at a time when I must cancel everything I had planned in order to…nap and color.  Not even the most amazing coloring book or rejuvenating nap can make up for cancelling on a friend for the third time because my headache keeps flaring.

I get plenty of rest in my life right now- my headache sees to that. What I have a lot less of is control. But, what I’m learning, slowly, is that lack of control does not mean lack of choices.  The choices are just…different. When I was awakened by a migraine this morning, I did still have options: see the day as lost to napping and coloring, or see the day as a pajama party with me and my stuffed Dory the fish as we create art that no one else will see.  

As it turns out, choosing to enjoy in the midst of control-less-ness is surprisingly restful. And now, it’s pajama party time!  Ttyl 🙂

New Year’s Greetings!

Merry Christmas and a very Happy New Year to all! We’ve had a busy 2019, so there is much to include in our year end update!

Natalie stays busy with acupuncture 3x a week (and two different acupuncturists), physical therapy once a week, and visiting her neurologist, pain specialist, GI doctor, primary care doctor, and therapist on a regular basis.  On top of her packed social schedule, Natalie enjoys using her Thera Cane Max trigger point massager, inhaling peppermint oil every 1-2 hours, and selecting which crazy socks she owns best suit the events of the day. This year, Natalie loved getting her braces removed a month early (because she had to get a brain MRI), trying opiates for the first time, and experimenting with countless different sets of dietary restrictions (though what she can and cannot eat remains remarkably unclear).  She can identify over thirty different pills on first glance and swallow anything of any size without gagging (including her sadness).

Cory doesn’t have a spare moment between doing most of the chores and cooking, but he has become better at both.  He enjoys organizing Natalie’s pills in a huge pill organizer that was clearly designed for old people (it has a convenient travel case!), and doing something called “work,” which is apparently distinct from what Natalie does all day getting to and from doctor’s offices.  This year, Cory loved getting to read an entire chapter of a book before Natalie’s nightly emotional rant and watching three seasons of Parks & Rec while Natalie was in the hospital. He also came up with the idea for this New Year’s update letter, which Natalie says is “the third actually funny thing he’s thought of this year.”  Way to go, Cory!

Donut has lost some weight.

We wish you a much different and less eventful 2020 than our 2019!

Love,
The Meads

Nerves

I don’t know much about nerves, except now I know there are a lot of nerves in the human head.  And one thing I do know about nerves is they have something to do with pain. So in a hypothetical, epic-length saga about the treatment of mysterious and severe headaches, it makes sense that doctors would think to do things with nerves.  However, WHAT the doctors decide to do with the nerves makes this epic-length saga worth following.

The first time I came into the hospital with a headache, they did not take it super seriously.  So they gave me what is called a “migraine cocktail” (a bunch of drugs that make you feel really weird) in the ER, then they sent me home.  I told them upon leaving that I still had a headache, but they said “Go home, go to sleep, and it will go away soon.” (Let the careful reader take heed of how simple this sounds.)

Two weeks later, I came back.  They did take me much more seriously the second time around, which I appreciated.  The first indication of the seriousness was them asking me to put on a hospital gown this time.  This made me wonder what exactly they intended to do to fix my headache attack, because it was contained to my head, and the hospital gown seemed to not go any higher than my neck.  My imagination was not kindled enough by this unanswered question to come up with ideas about what they’d do to me, because I was busy having a headache attack. But if my imagination had been sparked, I guarantee that there is neither enough imagination in my head nor is there enough imagination the whole world to think of what my ER doctor thought to do.  Ladies and gentlemen, it’s the lidocaine walrus.

We begin our story of the lidocaine walrus where any normal story begins: two Q-tips, a mysterious liquid that numbs everything it touches, and a very enthusiastic medical resident.  The medical resident was in fact one of the most enthusiastic people I’ve ever met in my entire life…at the end of her 12-hour shift, she was still smiling and very excited to inject lidocaine into my left temple.  I was cool with the plan, because I was unaware of what other options existed, and my head hurt. So after getting my approval, she disappeared for a short-ish amount of time (we’re on hospital time in the ER, remember), but when she returned, her boss (the attending) was with her.  The attending seemed less excited about injecting lidocaine directly into my head, like any normal person.  But this attending did also have an imagination, because she recommend an alternative: soak Q-tips in lidocaine and stick them up my nose.  This, in theory, covers the nerve bundles at the back of my nostrils with a numbing agent and thereby stops my head from hurting. A traditional approach?  I think not, but I was interested in this needle-less plan to no pain. The resident was likewise interested, and mentioned she’s never tried lidocaine walrus-ing someone before.  She rushed out of the room with a childlike, somewhat magical grin on her face, like a kid walking into Disneyland for the first time.  

When the resident returned, she had looooong Q-tips, two vials of lidocaine, and a downright contagious sense of anticipation.  “I looked this procedure up online just now, and it seems super fun!” she says. I thought in the moment that it’s probably not a good thing that I’m about to be a lidocaine walrus guinea pig, and it’s also probably not ideal that the resident had to Google exactly how to lidocaine walrus someone.  But I was altogether unconcerned, due to some mixture of optionless-ness and the aforementioned contagious sense of anticipation. She doused the Q-tips, then gingerly moved them way up my nose, then left for 10 minutes while I soaked my nerves and enjoyed being a walrus.

There were zero pictures taken during these 10 minutes, and Cory was the only witness, other than the super excited resident.  So I must leave the rest of this story to your imagination.

Let’s fast forward a month and a half, to my next nerve-related procedure: the occipital nerve block.  This one is more needle-y, I’m warning you now in case you want to stop reading. (Mom, I’m looking at you, if you even read my blog.)  

The idea of an occipital nerve block is two of the nerves that run over the head get fed a large amount of liquid steroid via syringe injection and then everyone hopes for the best.  The ideal place for injecting these large amounts of liquid steroids (other than nowhere) is at the spot where these nerves exit the neck muscles, at the back of the head. When I scheduled this procedure, I knew needles were involved, and I actually signed up for a second procedure to be done at the same time, which involved more needles.  Because when it comes to Draco, I like to go for broke and try every headache elimination strategy I hear, needles or no needles.

An anesthesiologist performed the occipital block.  He told me that he doesn’t tend to knock people out when he’s on rotation at the pain management clinic, which is a huge bummer because having an anesthesiologist do something to you that doesn’t involve you sleeping feels like a huge waste of time.  I wanted to ask if he was allowed to knock me out before he did the needle stuff, but he never mentioned the option, and I didn’t want to look like an anesthesia addict.  He did turn to Cory and said that family members are usually asked to leave for these procedures, because they don’t want to deal with fainting family members. I guess Cory looked tough enough to handle the situation, so they didn’t make him leave.  But this exchange begged the question: If he is a fainting risk, what will that make me??  I asked myself this question not with fear but with optimism, because if the anesthesia-less anesthesiologist wasn’t going to help me out, perhaps I could faint quickly instead!  

Unfortunately, my pain tolerance threshold has increased significantly over the past few months.  Old Natalie probably would have fainted at some point during the injections to the nerves, even though lidocaine was involved this time around, too.  New Natalie was able to power through that plus the second procedure with only some lightheadedness, though I did ask to lay down halfway through it. Not fainting is not the worst thing about the past few months, obviously, but this did make me question whether endurance is actually a good quality to have in every situation. 

Cory, who remains the only non-doctor witness of all my nerve-y procedures, held my hands during the occipital block and whispered, “You’re so brave, Natalie.”  He often says this when I’m going through something objectively difficult, which is often lately. He didn’t say this during the lidocaine walrus-ing, because that was funny the entire time and involved no needles.  But anyway, Cory is such a sweet guy, I’m glad to have him. But every time he tells me that I’m brave, I get a little bewildered. Brave? Why does he pick the word brave? Why not tired? Or wildly attractive? Or clearly in pain?  These adjectives all feel like they fit better than “brave” does. Brave is what people are when they choose to do something scary, not when the scary thing chooses them.  When the scary thing chooses them, they’re just…unlucky.  Unfortunate. Pitiful. Miserable.  

But as I was thinking over what to say in this post, and whether to be whimsical or inspiring, I realized that CORY MIGHT BE RIGHT ABOUT SOMETHING.  Bravery, specifically.  

Because a wise king once said this:
“Simba, I’m only brave when I have to be.”

That’s right, it’s Mufasa, from my ultimate favorite movie, The Lion King.  Mufasa said this after rescuing Simba from the hyenas in the elephant graveyard, when Simba said that he went looking for trouble because he wanted to practice being brave.  Mufasa then explained to his cub that bravery isn’t orchestrated or planned ahead of time; bravery is what is quickly demanded of you when you wish it wasn’t, when you’re afraid and desperate for another way out but there isn’t one.

So I have been quite unlucky, there is no doubt.  I’ve felt cornered and out of options a lot recently.  But maybe I am brave, sometimes, when I choose the only choice I have instead of choosing to do nothing.  Like when I choose to go for broke and get needles in my head (or Q-tips up my nose) instead of deciding I won’t. Or when I choose to have hope instead of giving up.  Or when I choose to have joy on the hard days instead of being grumpy. Or when I choose to believe that a loving God exists instead of letting the hurt I feel blind me to the truth.  Jesus had to make similar choices, but his needles were in a crown of thorns, his giving up would have changed all of history, and his hardest days were very, very hard.

Maybe these sorts of choices define bravery.  Or maybe I’m just a lidocaine walrus and you should be very concerned about me turning my head too quickly and accidentally stabbing you with a Q-tip. It’s hard to say.

Natalie’s Top 10 Hospital Survival Tips

a.k.a. Some Information That Is Hopefully Forever Useless To You

This post is dedicated to my friend Joyce, who wanted me to write a hospital survival guide as a book. But it would be not only the world’s shortest book, but also the least popular book of all time. So I’m publishing just 10 tips instead. If you’re a publisher in need of a book that no one will want to read…call me.

  1. KEEP TRACK OF YOUR CHART.  Your chart is your everything when in the hospital- it determines what drugs you can take, what you can eat, IF you can eat, and probably what color of grippy socks you are allowed to wear.  Your chart also has this nasty habit of getting away from you. If a doctor says, for example, “I’m going to let you take super-duper-painkiller today” and then super-duper-painkiller isn’t on your chart after that doctor’s shift is over…your chart has gone AWOL.  It was bound to happen, but you’re doomed. No tips will help you now. Double check your chart. Always.  
  2. Happy nurse, nothing hurts!  That’s what I always say, starting now.  The key to an enjoyable hospital experience is treating the nurses like valuable human beings.  Be friendly, say please & thank you, and carry on a conversation when you can. Don’t be that person who is known for trying to punch nurses in the face.  And yes, this person actually exists. He was in the room across the hall from me.
  3. Maintain a list of questions that provoke long and distracting answers.  This is for when something with either a needle or an IV is about to happen, and you need to forget about it ASAP.  It is critical that you think of questions to ask a nurse or a friend ahead of time, because you won’t be able to think of any interesting questions under pressure, and you can’t trust other people to quickly distract you.  Play to the person’s passions and opinions, and encourage them to respond verbosely or comically, so that you don’t have to say much. Some examples: Will you rap the entire Constitution of the United States for me?  What’s your opinion on daylight savings time? Are you good at any impressions?
  4. Eat free food!  Nurses have access to a limitless supply of saltines, graham crackers, apple juice, orange juice, cranberry juice, ginger ale, ice, and water.  It’s like hotel room service, but hopefully friendlier. (See tip #2.) And there are way fewer options so you don’t have to stress out over what to pick from the menu.  If you have weird dietary restrictions that keep you from having juice and gluten, like I did…ignore them. The hospital is not the place for maintaining a healthy diet, so give up while you’re sort of ahead.
  5. Pretend to sleep if you don’t want to be bothered by anyone.  Or hide out in the bathroom for a long time, but that is less comfortable.  Doctors and nurses have no shame and will interrupt ALL other activities. Even if a doctor comes into your room and says your name…pretend to be very soundly asleep.  There is nothing worse than letting on that you are a light sleeper (or even worse, a faker who isn’t actually sleeping).
  6. Actually sleep, as much as you can.  Nighttime is prime time for pokes, blood pressure, and measuring how poorly you’re sleeping.  Daytime is for sleeping. If your friends want to visit while you’re awake, invite them to come by late at night.  4 or 5 am, for example.
  7. Remember the name of every doctor and nurse who comes into your room, even if only for a moment.  It’s especially important that you remember the name of your attending physician, because they own your chart.  (See tip #1.) You never know when something might happen, like maybe you get a nasty migraine, and you’ll not be able to see, and the attending will come in to help you.  But they won’t identify themselves as “the person who looks like the actress who plays Susan in the Narnia movies,” even if that’s how you remember them, so you really need to know their name in this scenario.  ALSO, if you develop a habit for visiting the ER or hospital over and over again, you may see these people multiple times, in which case you will want to start off with some brownie points by remembering names. This has happened to me with two nurses so far.  It feels like we’re old friends now. (See tip #2 again.)
  8. The Medline bottle in the restroom labeled “Deodorizing Spray” is room spray, not spray-on deodorant.  If you think that is obvious, just wait until you’re deliriously sleepy from being in a hospital for 3 days.  (See tip #6.)
  9. An IV has optional accessories, including a cover to keep it dry in the shower.  Failing to ask for one makes your IV tape peel off, and you will have to confess to your nurse that you showered without an IV cover and you will feel dumb even if you had no reason to know that IV covers exist.  In the worst case, your nurse has to replace your IV, which makes everyone unhappy. (See tip #2 yet again, and tip #3.)
  10. Above all else, know that you are supposed to be in control of your hospital stay.  But this may seem impossible, especially without seeing or having control over your chart.  (See tip #1.) So when you feel out of control, remember that you can decide how to use the deodorizing spray, when to close your eyes and pretend to sleep, and whether or not to punch your nurse in the face.  Sometimes, it will feel like these are the only things you can control, and everything else is slipping through your fingers.  
    But remember, you are in the hospital in the first place because you’ve lost control of your body. So it’s best to accept the reality: like in all of life, you have less control than you want.  But maybe that’s ok, if you are blessed with trustworthy friends and doctors and nurses…and if you are willing to trust them when the bottom falls out of your life. This is hard to do, so be sure to drown the struggle in graham crackers and juice.  (See tip #4.)

Hipster Glasses

I blame the hospital for making me so unrecognizable.  And I think it started with time.  

I don’t mean a lack of it, which is my usual complaint about time.  There is something called time-orientation, which is a trait a person can have (or not have).  The opposite is event-orientation. Cory and I first learned these terms at a leadership training retreat in college- one of those weekends where you go to a remote location with a bunch of other immature adults who you don’t know and you voluntarily do a lot of simulations that make you question if you are a good person.  The discovery: There are no good people. While on this retreat we also learned that people tend to be either time-oriented or event-oriented.  Time-oriented people are the types of folks who I would perhaps describe as “reliable” in a time sense…they don’t run late, they don’t end late, and they in general respect your time.  Event-oriented people, on the other hand, may not finish on the dot or map a meeting down to the minute, but they are good at achieving the purpose of an event to its fullest extent and focusing more on the goal than on the schedule. 

Time-orientation is not better than event-orientation, as these are just two different ways to go about life. Or this is what we were told at the retreat.  But I’ve always been time-oriented, and more so after struggling with insomnia.  And I, in my immense patience and accepting attitude, have many event-oriented friends. I love them but also was constantly confused by why they couldn’t be superior, time-oriented people like myself.

Then I ended up in the hospital for two weeks, which in a strange way felt like two years.  And while there, I learned about something that I dubbed hospital time.  It’s like football time, but usually much longer and 100% less predictable.  Here are some examples of statements using hospital time instead of normal-people time:

The MRI is going to happen soon.  “Soon” in hospital time could mean minutes or hours. But I’d better be ready before it’s my turn, otherwise I forfeit my spot in the mysterious line of confused hospital patients waiting to get an MRI.

The doctor is coming sometime this morning.  “Sometime” in hospital time means enough time to fall back asleep, wake up, get dressed, order breakfast, eat breakfast, talk with a friend on the phone, then for Cory to get up, get dressed, pick up coffee, and drive over here and leisurely find a spot in the parking garage.  In fact, I don’t even ask where the doctor is until late afternoon. And it’s not worth asking again until tomorrow, at which point hospital time resets to zero.  

The medication is supposed to get delivered before I’m in immense pain.  Ha!  Let’s not talk about hospital time anymore.

A few days ago, Cory and I were in an airport, traveling for Thanksgiving.  (My headaches behaved reasonably well, thank God!)  I thought it would be nice to eat at an airport Chili’s for dinner during our layover, so we sat down and ordered a truly mediocre meal, and chatted, and connected over how hard life has been these days.  And I laughed and smiled, which can be hard for me to do recently. It was nice.

Then Cory said, “We should hurry up…our flight leaves soon.”

And it hit me: Over the entire meal, I had not thought about how we were in an airport and how important it was to not miss our connecting flight!  I was caught up in the conversation and not aware of the time. I asked Cory about this (instead of finishing my food and moving along to the gate), and he confirmed that I’ve been “like this” ever since getting out of the hospital.  (Cory, who just read this, doesn’t remember this conversation at all. Probably because he was so focused on us getting to our flight on time.)

Hospital time took hold, and I am now an event-oriented person, apparently. I used to end a meeting with the agenda unfinished if the time was up, and I had no qualms about being the first person to leave anything that went late into the night.  Now I’m regularly unaware of the time when I meet up with friends, and I ran my last doctor’s appointment so late that we kept another doctor waiting outside to use the room. I barely recognize this clock-free, unbounded version of myself. It feels like I went to hospital and boom…I’m just different now.  

There are other things about me that just up and changed since being sick, without my permission.  Some of the changes are more noticeable and others less; some are easy to accept, like event-orientation, but other changes are hard.  Losing weight, for example, was noticeable and hard. It’s difficult to explain, but losing weight when I wasn’t trying felt like a very unwelcome change.  And with this, and my new general situation, came a necessity for new fashion choices.

The new style likewise started in the hospital, where I embraced comfy and fitting clothing primarily out of necessity.  I’ll talk more about this in a future post, but in short, I’m now addicted to fun leggings and clashing, but likewise festive, socks.  This is another one of the things I picked up in the hospital that stuck, as I now wear something other than leggings only when strictly necessary.  I also started wearing glasses a few weeks ago. They aren’t prescription glasses- they are just blue light blocking lenses, and they keep my headache from being aggravated by electronics and bright ceiling lights.  There aren’t a lot of styles to choose from, especially for women, so I ended up with a pair of glasses that are large and round, with a tortoise shell pattern. 

And finally, I just replaced my jacket (which was too big) with a smaller Patagonia puffer jacket.  So, my new “usual look” is a pair of fun leggings, a Patagonia puffer jacket, and large, round glasses.

So, there you have it…I’m a hipster!


Identity is often discussed in the Christian faith.  Christians are called to root ourselves in Jesus Christ alone, because He does not change or fall out from under us like other things do.  I understand this in a new way as I’m being transformed into an event-oriented hipster. Cory and I both got many laughs out of my hipster-ization process, and I enjoy feeling less enslaved to my phone clock throughout the day.  But each unexpected change in who I am, from the smallest to the largest, means some part of my old self is gone. And that’s weird, and hard. I was afraid to wear my large glasses outside of the house for days and days because how I looked in the glasses was not how I imagined me.  The process of feeling comfortable with my new look meant letting go of vanity and uprooting a part of myself that I had never before realized was deeply reliant on my external appearance.  And there are many bigger examples, like letting go of being an independent person in favor of having Cory help me organize medications. Or letting go of me being someone who is “always on” and instead taking a nap when I’m tired.  

These many parts of myself are changing, and sometimes it makes me laugh, and sometimes it makes me cry.  Or both. It’s like life is spinning out of control. But I see now more than ever why it’s just so much easier to have all of myself rooted in Jesus, who makes me into a better version of myself than I ever could on my own.  And this new me may not look like a hipster forever, but it doesn’t matter, because I’m no longer so wrapped up in how I look. And really, I can’t imagine a future with Jesus that doesn’t involve wearing leggings.  They are waaay too comfortable.  And fun socks, too. Never forget the fun socks!

Draco, Snape, Voldemort

I was recently complaining to my husband, for something like the ten thousandth time, about how easy it is for my pain to feel completely imaginary.  I minimize my pain a lot, probably more often than other people, but other people can accidentally minimize it, too. It’s both a blessing and a curse that my chronic pain involves having a headache- a blessing because it’s easy for people to understand the basic idea, meaning I don’t have to be creative, but also a curse because it can be, at the same time, impossible for me to feel understood.  

Let me elaborate.  You’ve had a headache before, haven’t you?  Most people have, so something specific comes to mind when I say that I have a headache, or that I have lots of headaches, or that I have headache attacks.  It’s different than if someone were to tell you that they have strokes, or ALS, or even cancer, because you most likely don’t know anything about how these feel.  But when I mention my struggle with chronic pain, it recalls a past experience for many people, and they say something like “Oh, I get headaches, too!” or “I have migraines, they suck!”  And just like that, it seems on the surface that our experiences are comparable, even though my research indicates that my headache condition is exceptionally rare and found in something like 1% of 1% of all headache sufferers.

This means that many people who earnestly try to understand my chronic pain by empathizing often misunderstand my real experience, because they boil it down in order to fit it into their experience.  It’s tempting to do this with something as common as headaches, so I get it. But when my pain is simplified or forced into an experience that is barely comparable but called by the same name, it suddenly feels insignificant to me.  I start to wonder whether my pain really is that bad.  I start to think, perhaps everyone who has headaches gets headaches that are as bad as mine.  Perhaps everyone who has headaches has them all day, all of the time. It’s a weird spiral of thought.  

Anyway, as I was bemoaning this particular crazy thought pattern and how it’s triggered in my day-to-day experiences, my husband came up with a great idea: re-branding!  If I don’t use the word “headache,” then voila! We’ve avoided the word that minimizes my pain. And I have a clean slate upon which to draw a picture of my unique experience for my caring friends.  

So, ladies and gentlemen, without further ado…Natalie’s unique headache brands!  It’s a trifecta: Draco, Snape, and Voldemort. (For those unfamiliar…these are the names of characters in Harry Potter.)

Draco is my always-there headache, meaning 24/7; he’s a constant “companion” who does not go away, even with many medications intended for this very purpose.  When he decides to enter the spotlight and flare up, he causes all sorts of trouble, like light sensitivity, or a throbbing/pounding pain in my head.  Draco and I know each other well, we met almost two months ago. A neurologist would call Draco my daily persistent headache.  

Then there is Snape, a.k.a. primary stabbing headache attacks.  Snape lurks in the shadows, always nearby and ready to do something mean.  Snape feels like getting stabbed repeatedly in the head with an ice pick. So, when Snape does show up, he is always scarier than Draco.  Snape also has a tendency to stay around after arriving while not responding to medications, which explains why Snape is who usually sends me to the emergency room.

And finally, we have Voldemort.  Voldemort is, of course, ugly, just like the severe migraines which he represents.  When I see Voldemort (which is rarely), he always takes center stage, and is never in a supporting role.  But overall, Voldemort is seen far less often than both Snape and Draco. He appears only in extreme circumstances, like if Draco and Snape have both been around for days and days.  Unlike Snape and Draco, however, Voldemort is not usually as long-lasting. Voldemort can flare for a few hours, or maybe a day, and can often be controlled by medication. (This is where the Harry Potter metaphor breaks down, I know…)


Most everyone has had a headache.  But who has experienced Draco, Snape, and Voldemort headaches??  I say this not to convince you that I’m special (you REALLY don’t want to be special in this way…trust me), nor do I want you to start asking me how Draco or Snape is today.  That’s downright weird. But this helps ME to understand that “headache” is an altogether insufficient word to use for my pain, even though I have to use it time and again because it’s the only generally agreed upon term.  At least now, when I say headache to someone, I’m really saying Draco, Snape, or Voldemort to myself. This helps me to validate my own experience. And, if there is time, I try to elaborate to others and share more about what I mean by “headache.”

I experience more than simple headaches.  If you’re someone who is going through a hard time, you may experience more than depression, anxiety, grief…whatever your struggle is.  Perhaps you can also think of a word that you use that minimizes your pain and makes it feel imaginary. If whatever you are going through feels like too much to fit into the word you’ve been using…you should re-brand!  Maybe no one will use your words to describe your pain (and maybe no one should, especially if you come up with weird words like I did). But at the very least, you can describe your pain to yourself and validate your experiences.  

And for the Harry Potter fans that made it to the end of this post, here is a link to the video I know you are thinking about!

My New Hobby

When I first went on leave from work, I was bored.  I have very few hobbies, and I’m known for hating most every TV show and movie in the universe. And yes, for those wondering, this includes Stranger Things, Game of Thrones, and almost every Marvel movie.  My dear friends, detecting my plight, started suggesting hobbies and other activities to keep me “entertained” during the day, like cross stitching or making tie-dye t-shirts.  Then I started getting headaches. And now I’m investing a lot of time in a very addicting hobby: talking with the neurology office folks on the phone.  We’ve really hit it off, and I’m thoroughly entertained by the complexities of the system in which I’m ensnared. Even the best of hobbies cannot compare!

For example, here are the highlights from my most recent conversation with a neurology office.  Names have been changed to protect the innocent (everyone is innocent, except for the medical system that is out to get us all).  Italics were added later, to maximize your understanding of the situation.

Act One
Neurology Admin #1: Hi Natalie, I’m calling you back in regard to you wanting to make an appointment with Doctor Headache-Expert.  

Me: Oh, excellent!

Neurology Admin #1: Are you a new patient with us?

Me: No, I’ve been in twice already.  Plus something like a million neurology consults in the hospital.  I’ve met the entire neurology department by now. Except for Doctor Headache-Expert, oddly enough.

Neurology Admin #1: Then I’m sorry to say that you can’t make an appointment with Doctor Headache-Expert.  You are not allowed to switch to a different neurologist if you’re already seeing one at our office.

Me: But the neurologist I saw last week at the ER recommended I get an appointment with Doctor Headache-Expert right away, because the Headache Clinic doesn’t have openings until the end of January.  Otherwise I’d definitely be at the Headache Clinic right now, not talking with you about neurologists.

(At this point, Neurology Admin #1 pulls up my chart.)

Neurology Admin #1: You’ve already seen Doctor Neurologist #1 and Doctor Neurologist #2.  You’re not allowed to switch to Doctor Headache-Expert. This is not a choose your own adventure game, you entitled millennial.

Me: This is not what I was told by the neurologist in the ER.  Who can I ask about switching to Doctor Headache-Expert?  And can anyone tell me why I didn’t see Doctor Headache-Expert to begin with? Or why I was allowed to switch neurologists before? Or why I get a funny feeling that I’ll leave this conversation with more questions than answers?  

Neurology Admin #1:  Let me ask. I’ll call you back.

Me: When will you call me back?

Neurology Admin #1:  I’m not sure. Bye.

Me: Err, ok bye. 

(We hang up.  I delay all calls to other doctors and government offices in order to keep my phone completely unencumbered.)

Act Two, 10 minutes later
Neurology Admin #2: Hi Natalie, I’m calling about you wanting an appointment with Doctor Headache-Expert.

Me: Yes. The neurologist I saw last week at the ER recommended I get an appointment with Doctor Headache-Expert right away, because the Headache Clinic doesn’t have openings until the end of January.  Deja vu.

Neurology Admin #2: Well, you unfortunately can’t schedule an appointment with Doctor Headache-Expert.  You’re already seeing Doctor Neurologist #2 in February. But you can see Doctor Neurologist #2 sooner, if you prefer.  I’ll throw you a bone, because I know you’re going to keep calling until you get something.

Me: Ummm ok.  Sure. Or you could get me an earlier appointment at the Headache Clinic.

Me: But does Doctor Headache-Expert have any openings? Because I can get another referral or something if needed. I will figure out how to beat this system.

Neurology Admin #2:  Doctor Headache-Expert is pretty busy.  So you might as well just see a provider in the Headache Clinic in January.  

Me: That is nearly three months away. Does anyone understand how long that is to someone who has a headache all day, every day?

Neurology Admin #2: (silence)

Me: Ok, you’re scaring me a little.  Please, who can I ask about seeing Doctor Headache-Expert? Can anyone authorize the switch?  I thought this person was you, but apparently not.

Neurology Admin #2:  I can have a nurse call you, she may be able to deem it medically necessary.  

Me: Victory!  Ok, thank you.  

Act Three, 20 seconds later
Neurology Nurse: Hi Natalie, I’m calling about you wanting an appointment with Doctor Headache-Expert.

Me: Yes! The neurologist I saw last week at the ER recommended I get an appointment with Doctor Headache-Expert right away, because the Headache Clinic doesn’t have openings until the end of January.  This entire blog post is starting to feel like copy-paste.

Neurology Nurse:  He wasn’t allowed to tell you that.  A neurologist can’t authorize you switching neurologists just because you were in the ER. Obviously.

Me: A neurologist does not have the power to send me to a different neurologist??  Nurses really do have all of the power. And I’m talking to a nurse right now. That’s it, I’d better start begging.
Please, what can you do to help me?  Please, please, are there any other headache experts at the neurology office who I am allowed to see?

Neurology Nurse:  No, all the other headache experts work out of the Headache Clinic.  Hence the name, “Headache Clinic.”  

Me: Please, will you let me see Doctor Headache-Expert at least once?  I just want to talk to someone before January. Otherwise I wouldn’t be on the phone with you, truly.

Neurology Nurse:  Doctor Headache-Expert only works four hours per week out of this office.  So, she is booked through March.  Give up now, there is no hope for you.

Me: And what does she do with the other 36 hours?  Work out of the Headache Clinic?

Neurology Nurse: No, she does research.

Me: Research?!  So she only sees like….4 patients per week? That’s it? This explains a lot, and I wonder why no one mentioned this earlier.

Neurology Nurse:  Yes, that’s correct.  

Me:  I guess I should give up soon.  Can I have an appointment in March, just in case there is a cancellation?

Neurology Nurse: No, you cannot.

Me: Like now.  Oh. Ok.


The score, as of today:
Neurology: All of the points!
Natalie: 0

Finding Patients

Anecdotal evidence and reports from my friends indicated that I am about a thousand years younger than the average hospitalized adult. And a thousand years leaves a lot of room for confusion.

The first time I had some explaining to do, for example, was on my second morning in the university hospital. There was an outdoor courtyard in the first hospital I was admitted to, but then I transferred to the university hospital, where I wasn’t allowed to go outside or even leave the floor. So I mostly limited my physical activity to my room. It’s also important to note that in the university hospital, the doors to the rooms had little windows, which are perfect for (maybe even intended for?) spying on patients.

I did not realize the purpose of the window, however, until I decided to get up and stretch my legs a little bit. I didn’t do anything crazy, just some hamstring and quad stretches. Then I bent over and touched my toes. ALERT! ALERT! Someone who I didn’t recognize rushed into my room. “Are you okay? Are you okay?” he asked desperately. I stood back up and stumbled over an awkward apology: “I’m fine, I mean I was…I’m sorry, I was just touching my toes. I mean, like stretching my legs. By touching my toes. I’m not like bending over in pain.” Is it common to bend over at the hips when in pain? I think not, but that’s not important, I guess.

Needless to say, I didn’t bend over to touch my toes after that.

The following day, I tripped the alarm again. I was out of bed, to get a fresh t-shirt from my bag. I learned early on that hospital robes are not a requirement for being hospitalized, so husband & friends provided me with comfy shirts, fantastically colorful leggings, and equally stupendous socks. I think I was the best dressed patient of all time. So anyway, I got up to get a shirt and my door opened again. In rushed a nurse assistant carrying a pitcher of water, which I had asked for a few minutes earlier. She looked very concerned, in spite of having fulfilled her duty of bringing me water. She stood in the middle of my room and looked around desperately in every direction.

“Where are they?” she asked.
“Where is who?” I replied.
“Are they in the bathroom?”
“…no one is in my bathroom, so I’m going to guess not.”
“Then where? They must be in the bathroom.”
“There is no one in the bathroom.”
“Then where?!”
“Where is who??”
“The PATIENT. Where is the patient??”
“…I am the patient.”
“Where is the patient??”
“I AM THE PATIENT. I AM RIGHT HERE.”
“What? You are the patient? Are you sure?”
“…yes.”
“Oh, ok then. Here is your water!”

She set the pitcher down on the table cheerfully, and with a hint of pride in having located the missing patient. I changed my shirt as quickly as possible and went back into bed, where I belonged.

The same nurse assistant came back a few hours later and asked if I needed help taking a shower. I tried to refuse politely, but she was so insistent that I had to shower now, and I must have help taking a shower, that things got awkward. I’m sure you can imagine. In the end, I won, clinging proudly to the final shreds of my privacy and youthfulness.

At least my bathroom door didn’t have a window.

Spoons

I first encountered the Spoon Theory of chronic illness in a book called Furiously Happy (my favorite book in the entire world). The idea is simple: every action you take in a day costs some number of spoons, and if you live with a chronic health condition, you start each day with fewer spoons than normal people and some actions may cost more spoons than they cost a normal person. When you run out of spoons, your day is over and you crash on the couch or go to bed.

The Spoon Theory describes so accurately what has become my daily struggle: somehow making a life out of very limited energy. I used to be an overactive person whose least favorite thing was napping. I regularly ran my husband ragged. But now, between my medications and my constant headache, I can “run out of spoons” and crash at nearly any time of day. A few days ago, I lasted until 11 am. The day after that was a bit better because I at least made it until the afternoon, but then I needed a nap, and I fell asleep at 8 pm that night. Sometimes caffeine and coloring (an activity I used to dislike because it isn’t active enough) can replenish my spoon supply, and other times I have to cancel all of the plans I had for the rest of the day and just lay on the couch. I don’t get any sleep while lying on the couch, because I usually have a bad headache, but I can’t manage to do anything else when I run out of spoons. If I’m lucky, my dog will come and sleep beside me, but those who know my dog know that he often runs out of spoons himself. So, he’s not always a comforting pooch.

Now you know the Spoon Theory, an important piece of chronic illness lingo. But when it comes to my spoons in particular, there are two other things I want you to know.

The first thing is that my spoons are coated in butter. Sometimes they are so darn slippery that I drop them all in a fantastically disruptive manner and all is lost. Take for example our small group Bible study last week. It’s hosted by some friends in the evening, which means after dark during this time of year. I had a great day that day, and was feeling downright normal…until we started driving to small group. Because it was dark, all of the cars on the road had their headlights on, which is a reasonable and safe thing to do. But to me, it was like an army of lightbulbs mounting an attack against my head, and the bright LED headlights led the charge. And just like that, I started getting a headache attack, and dropped all but a few of my spoons. By the time we arrived at our friends’ apartment, I couldn’t lift my head up to look at anyone because I was so aggravated by the ceiling lights. Afterward, we came home and my husband gave me lots of drugs, turned off all of the lights, and sent me to bed. I went from having a higher-than-average number of spoons to having almost zero, all in the course of ten minutes. Very, very slippery spoons.

The other important thing to know about my spoons is they don’t exist. Or that is what I want to think, because I deny my spoons all day, every day. I’d rather experience pain than acknowledge that my boundaries should be different than they were a few months ago. Maybe it’s because I’m new to the world of chronic pain, and I’ll eventually learn to acknowledge my spoons, and how few spoons I have. But does anyone really get used to having so few spoons? I don’t know. It’s hard to imagine I will. I know I should, though, because denying my spoons not only hurts me, but it also hurts the people close to me. My friends and family are very gracious, and they forgive me time and again when I plan poorly, or when I’m downright angry and I throw my spoons on the floor. But when I don’t have the energy to attend a baby shower that I helped to organize, or when I have to cancel dinner with friends for the third time because I refused to take a nap earlier in the day, I remember that I’m not the only person who suffers when I deny my spoons.

What I’m getting at is chronic illness sucks, and it sucks because of spoons. Or, more specifically, the lack of spoons. There isn’t a day that goes by without me wishing I could be who I once was, and have as many spoons as I once had. But I think I’m learning, very slowly, to not define myself by my spoons.

Conversation-Sized

“How are you?”

I feel bad for anyone who asks me this question recently. The best I can do is a give vague, single-word answer, such as “vertical,” “headachey,” or “tired.” On a bad day, I get angry and snap when asked this one simple question.

And I get it, I shouldn’t be so picky. The phrase “How are you” is a colloquialism that serves as a drop-in replacement for “Hello.” Most people (in America, at least) don’t expect to hear a long story in response to the question, “How are you?”. What they expect is for you to say “Fine” or “Good” or “Okay” and then everyone moves on with the conversation. But chronic health issues aren’t simple, and they can’t always be summarized into a conversation-friendly size. Sometimes all I have to offer is a long, venting story. Or maybe I was in the ER yesterday and the experience was so overwhelming that I don’t know where to begin. Then- just like that- I’m a conversation showstopper! And it’s not the case that every single soul who asks “How are you?” is ready for me to hijack what they thought was going to be a short and sweet conversation. So I get stuck, and angry that I can’t handle simple things anymore. And if I don’t have a one-word awkward answer coming to mind, I dodge the question like this:

Other Person: “Hi Natalie! How are you?”
Me: “Ohhhhh hi there! How are yoooouuuuu?”
Other Person: “I’m good! I spent the weekend doing blah blah blah…”
Me: *phew*

It’s the great “you” reversal!

But what the heck are you supposed to say if you want to know about my physical, emotional, or overall state of existence, and you don’t want me to get stuck? Here are some ideas for you…

  1. Give me yes/no questions. They are easy to answer even with only 3 hours of sleep, so these are my favorite. Is your headache very bad right now? Are you in a good mood? Have you been sleeping well? Is this week so far easier than last week?
  2. Ask about specific points in time. What happened last night after we last talked? Are you in a lot of pain right now?
  3. Infer how I’m doing from how I answer other questions. How many doctor appointments do you have this week? How long has it been since you managed to go on a walk? What are you allowed to eat?
  4. Don’t ask any questions! If you really just mean to say hello, then just say hello! Or give me a hug (or a 🤗, if over text). Or if you are a praying person, tell me you are praying for me. I won’t emotionally barf all over you unless invited…most of the time.

You may find these ideas helpful not only for me, but also for other people who are going through chronic illness or pain. This is you helping me to make my life-altering, overwhelming problems into something that is conversation-sized. Or we could call it bite-sized…or even fun-sized! Because not getting stuck in conversations is fun.

And I’m learning to answer questions better, too, as I adjust to my life as it is right now. I try to remind myself that my friends ask “How are you?” because they care about me, and I don’t have to pressure myself to tell them everything that comes to mind in order to graciously accept their love in a conversation. If someone asks me “How are you?” now and I don’t know how to answer, I pretend that they asked me one of the questions above and get myself unstuck that way. (If you just thought, “Wow Natalie, you are super insightful and introspective!”…thank you very much! But my ultra-intelligent husband is the person who keeps telling me to be more gracious, and I’ve finally got it through my rather thick skull. So all credit goes to him.)

And, on that note, this post is dedicated to my dear husband. I’m sorry for giving you the stink eye when you ask me how I’m doing. I can’t guarantee anything, but I will try to be less stinky eyed in the future!