The Most Romantic Thing Anyone Has Ever Done for Me

It’s weird to think that the most romantic thing anyone has ever done for me went largely unnoticed until this past weekend.  I realized it while standing in a hotel suite, wearing a long cotton-candy pink chiffon dress, and putting on some lip gloss.

I was getting ready for a wedding I was in, and I’d gotten to know a few of the bridesmaids pretty well over this whole wedding-planning week (because we were dealing with things such as trying to support the bride when she found out her mother-in-law was going to wear a long white crop-top dress to the wedding. Oy.)

While putting on our makeup, one bridesmaid saw a pill bottle on the counter and said, “What’s this?”  I’d set it there while digging through my make-up bag for mascara earlier, and I’d forgotten to put it back.  I guess she didn’t know whose it was (there were a lot of us going in and out of that bathroom), or she was just being super nosy.  Let’s give her the benefit of the doubt and call it the former.  I hadn’t even noticed the bottle because pill bottles are such a non-noticeable part of my life.  It would be like someone coming up to you, looking at your hand, and saying, “Look! A fingernail!”  You’d be all, “Oh yeah, fingernails.  I forgot about those because they’re always with me.”  That’s me and pill bottles.

“Oh, that’s mine,” I said, grabbing the pill bottle and putting it back in my bag.  She looked at me questioningly, because I guess not everyone sees pill bottles as such a common commodity.  I was afraid she was going to burn her hair off with the curling iron while she stood there waiting for me to answer her questioning look.  I’m bad at lying and also pretty bad at saying, “None of your business,” so I said, “It’s no big deal…I have this tiiiny brain tumor that seems pretty bent on ruining my life, but I’m on it.  It won’t kill me.  I just take a crap ton of pills.”  I threw the pill bottle back in my bag and started putting on blush.  At that moment, my face was a bit red without it.

“Wait, whaaaat?”  The bridesmaid (thankfully) uncurled her curl and stood there with one piece of hair curled and pupils about as wide as her open mouth.  I hate this reaction, which is the one I get every time someone finds out about my health problems.  At least she didn’t say one of my least favorite lines, which is “but you look so healthy!”  Like I should apologize for not looking sick enough to have a tumor or bipolar disorder or any of the other issues I have.  SORRY FOR TRYING TO HAVE A NORMAL LIFE.  MY BAD.

I shrugged it off, because usually when I pretend like something is no big deal then people tend to roll with it.  She picked up another piece of hair to curl.  I dug around for my lip gloss.  Finally she said, “Wait…I know Elle said you had health problems in college…was this it?”

“Yep.”  I was still trying to avoid this conversation.  She didn’t catch it or didn’t care.

“Wait, so…you’ve been with your husband since you were seventeen….he’s been with you for this entire time?”

“Yep, since day 1.  I got the call the day after I moved into college.”

“Wow, that’s so romantic.”  She shook her head and unrolled the hair she was curling.  I stopped halfway through applying lip gloss, my lips in a perfect “O” of surprise even though I hadn’t been surprised until that moment.  I stopped and stood up, lips halfway glossed, and looked at myself in the mirror.  I had never heard my story called “romantic” before.  There’s nothing romantic about MRIs.  There’s nothing romantic about blood test after blood test after blood test.  There’s nothing romantic about countless doctors with countless treatment plans, most of which don’t work.  There’s nothing romantic about panic attacks or delusions where I think people are trying to kill me.  There’s nothing romantic about the extraordinary amount of drugs I’ve had to be on.  Nothing, I tell you.  Nothing.

Except…

Maybe there is something romantic about a guy who is willing to stand next to me through all of that.  It’s romantic that he is willing to take me to appointments so I won’t be alone. It’s romantic that he will bring me water and hold me when I’ve been so terrified that I cried until I threw up.  It’s romantic that he has never once complained about how difficult it is to be with me, even though I know it has a specific and difficult set of challenges.  There is something wildly romantic about that, and I’d never put that word to it until that moment.

It’s far more romantic than the fresh roses currently sitting on my dining room table.  It’s better than the cute notes he leaves in my bags when I travel.  I’d take that over any line from any movie or any surprise date he has ever planned.  It’s the most romantic thing that’s ever happened to me, and I didn’t even know it.

While watching the bride and groom take their vows, I thought back to mine.  I thought about how when Andy said, “in sickness and in health,” he meant it.  I thought of how he’s made good on that promise again and again and again, far and above what should be asked of any man.  Then I cried.

Too bad about all of that makeup I put on.

Now We’ve Got Bad Blood

The title of this post is an obvious reference to a Talyor Swift song, except I’m pretty sure she was writing about a guy.  I’m using the title to write about my brain tumor.  Despite that difference, Ms. Swift and I have a lot in common.  By “a lot,” I mean we both know what it’s like to get unfortunate phone calls from men.  A Jonas brother broke up with her in a twenty-seven second phone call, and I got a call from my endocrinologist last night in which he told me my blood work came back with bad news.  Her bad blood was metaphorical, but mine’s literal.  Let’s not compare our pain.

He was, after all, a Jonas brother.

The doctor called at almost ten o’clock last night, which should have tipped me off immediately that it was bad news.  Doctors never call that late.  If they do, it’s never to say something like, “Just thought I’d let you know – you’re totally and mysteriously cured!” or “I found a stray puppy and thought it might cheer you up; I’ll be dropping him off in ten minutes.”  Nope.  They always do that sigh where they  don’t want to say what they’re about to say, but they can’t pass the unpleasant task off to a lesser minion.  Then your heart sinks and you wonder, “Oh no, how bad is it this time?”

Is it bad that I am familiar with this process?  That I’ve gotten enough of these calls to know exactly how they go?  I could probably do them myself.  I should tell the doctor, “Next time just e-mail me the numbers and save us both the trouble.  I’ll call myself and break the news gently.”  I might put my husband’s lab coat and square-rimmed glasses on my dog and pretend he’s the one telling me.  Bad news would be less scary if it came from a beagle.

The bad news is that my blood results showed certain hormone levels four times above normal adult levels, which probably means that my tumor is growing.  There’s a bit of irony there: I can’t keep plants alive (at all), there’s a good shot I can’t ever get pregnant, but my body apparently does a damn good job at nurturing a tumor.  Thanks, body. You’re a gem.  I’d rather you had the ability to grow some healthy cilantro, but I don’t get to choose these things.

Anyway, the doctor’s trying to devise our next plan of attack on this little dude.  It’s not cancerous, it shouldn’t kill me, but it does a pretty fabulous job of messing up my life.  It’s like I’m in a dysfunctional relationship.  “It’s not you, tumor, it’s me.  Actually, no it’s you.  I think it’s time for us to break up.”  Then, just when I think my brain is rid of him for good, the tumor comes back and my brain is all, “Come here, ya knucklehead.  Let’s give this thing another shot.”  Because my brain is frickin crazy, that’s why.

I have to go back on a med I was on a while ago, and I need to double the dose.  I told the doctor that last time I was on that pill (taken once a week), I would be sick for the entire day after I took it.  It was pretty bad, stuck-on-the-couch-waiting-for-it-to-end sick.  I usually took the pill on Friday nights, spent my Saturday on the couch, and then recovered on Sunday to get ready for another week.  The doctor says I have to take it anyway because we want to be “aggressive” on getting my numbers back to healthy levels.  Now I’m supposed to take that same pill, and I have to take it twice a week.  I’m supposed to torch two days a week for at least the next six months?!  How am I supposed to do that?  I think I’ll torch Mondays.  Everyone hates Mondays.  Imagine a wonderful pill that lets you skip Mondays!  This is going to get complicated with work and everything, but we’ll figure that out later.  Right now I’m dreaming of a Monday-less life.  Who knows?  Maybe this drug won’t make me sick this time.  That was years ago.  I’m practically a new woman now.  Since that time in my life I’ve traveled the world,  I’ve voted for a Democrat,  I’ve learned how to make the perfect apple pie,  I’ve dyed my  hair purple, and…I’ve trained my body to better metabolize drugs?! (something like that…)

So. I’ve got bad blood results, but at least we have a plan.  I lamented to Andy last night that with all of my health issues, my life expectancy has to be quickly dropping.  I sighed and said I’m probably not going to live to see forty.  “Don’t worry about it,” he told me.  “Neither of us are even going to live to see thirty if Trump becomes president.  The rest of the world will nuke us off the map.”  And that’s why I love Andy – because he can make me laugh when I would prefer to kick a wall.

Keep your fingers crossed for me.  New pills start this weekend.

Waiting. Get Me Out of Here.

I’m sitting in my endocrinologist’s office, and I just lied to the nurse.  I don’t know exactly why, but I know that doctors’ offices make me all jumpy and nervous.  Then I do stupid things like lie, when that really defeats the purpose of going to the doctor in the first place.

This room is so….white.  Why do medical offices have to be aggressively white?  I understand that they’re supposed to look sterile, but they end up looking stark and scary.  I’m in an albino room.  It’s not natural.  There’s a slightly peach model of a swollen thyroid on the counter, but I’m trying not to look at it.  It’s disgusting.

I’m here to get a checkup on my brain tumor, and you would think that after nine years of various endocrinologists, this process would be old hat.  Nope.  Always scary.  It doesn’t help when the receptionists are extremely mean, the other patients look just as scared as I am, and the only friendly person around is the lady on the waiting room TV smiling while she talks about genital yeast infections.

If I ever ruled the world, I would make the word “genital” an expletive.  It’s so clinical and just…ew, but the lady on the TV was awfully cherry about it.  Why can’t they show something nice and calming on a waiting room TV?  Or stand-up comedy? THAT’S a great idea.  Let people laugh so they won’t cry.  Instead, we have to watch creepy health shows.  Or we can read totally obscure magazines like Osteoporosis and You.

I lied to the nurse when she asked if I’ve been feeling down or depressed at all in the past two weeks.  I immediately said no, which was dumb because just yesterday I told Andy that I was scared I might be falling into depression again.  It’s been a rough couple of weeks, but maybe it’s not depression.  It was probably just a couple of lethargic and down weeks, and I’m sure I’ll perk up any day now!  I’m sure that’s it. Plus, whenever anyone asks how I’m doing, I automatically say fine.  Either it’s true or it’s probably about to be true.  I don’t like the weird and scared looks I get if I admit that I’m not doing well.  Plus, depression is a psychiatric issue, not an endocrine one, right?  I mean, RIGHT?

Fine.  I should have told the truth.  I’ll tell the doctor if he ever actually decides to come in here.  The nurse also asked if I have ever smoked, and I immediately said no to that one too.  That’s because she obviously meant “smoked as a habit, and not for less than a week while you were in Korea being stupid.” Korea’s like Vegas, and what happens there stays there.  Something like that.

The doctor is still not here, so I will take this opportunity to tell you about the meanie receptionists.  The first receptionist totally ignored me when I got here.  I stood there in front of her window awkwardly for a minute until she finally snapped, “Can I HELP you?” in a way that meant that was the last thing on earth that she wanted to do.  I said I was here to see Dr. H.  She rolled her eyes and said, “then you need to check in with the endocrine center.” I think it took all of her willpower not to add “duh” at the end of that.  I looked up at the glass window that clearly said “Endocrine Center.”  There was another lady sitting to the right of that sign, but there was no partition between the lady I was talking to and the lady I apparently needed to talk to.  They could have shaken hands.  I’m sure they’ve borrowed pencils from other.  Yet CLEARLY I SHOULD HAVE KNOWN to talk to the lady on the right instead of the left.  Oops.

I finally talked to the correct lady, and she was wearing a pin that said “Miracles happen!” I’m pretty sure she meant that to be encouraging, but I found it annoying.  For those of us on my side of the counter, no miracles have happened.  We’re there because we still have our tumors, our diabetes, our whatevers, and the trite encouragement from a piece of plastic felt less than genuine.

I have to go to the bathroom.  What if you have to go to the bathroom while in a doctor’s office?  I’d better hold it.  I don’t want them to think I left.  The nurse outside my door is calling patients and saying things such as, “Hi, is this Jane Smith?  Hi, I’m calling to give you the new dosage of ______ drug that you’re taking.  Take two tablets once a day with meals, okay?  Okay.”

I can clearly hear all of this from my room.  I could type you a list of a bunch of local residents and the drugs they’re on.  Isn’t this some sort of HIPAA issue?  It seems like it to me, but hey – I’m no doctor.  I’m the invisible patient with a brain tumor.  Don’t mind me.

So here I am, an hour and a half after my scheduled appointment time, chilling out in an albino room with a plastic inflamed thyroid and feeling bad about lying to the nurse.  I really have to go to the bathroom.  I’ve spent hours more pointless ways than this…probably.  I’m struggling to think of one at the moment, but I’m sure it’s happened.

Doctor’s here.  Gotta go.

He KNOWS Me (NOOO!)

I don’t think I would want to work at a pharmacy.  No one goes to fill prescriptions thinking, “Hooray!  Yet another reminder that I am not well, and I get to pay money to be reminded!  THANKS, PHARMACIST!”  Plus, it’s always a little embarrassing to pick up pills because now some random human is privy to my secrets.  Maybe they don’t know what my medicine is for, but maybe they DO.  I mostly try not to look at the pharmacist.  It’s like a drug deal.

Except, wait, it literally IS a drug deal.

If I could, I would always walk up to the pharmacy counter with a large floppy hat and sunglasses, wearing a black trench coat, and I would be staring mostly at the ground.  Are those new floor tiles?  They’re fascinating!  Inevitably, though, I’m always already at the store to pick up milk or something, and then I suddenly remember I need to pick up pills. I do a quick 360 degree scan to make sure no students are in sight (not kidding), and I rush to the pharmacy counter to pick up the drugs as quickly as possible.  “Quick – hand over the goods.  Here’s my credit card.”

I don’t really say that.

Most of the time.

Okay, fine. I never say that.  It turns out that I could, though, because last week I found out a horrifying fact: I am such a regular at my pharmacy that my pharmacist knows me.

It started innocently enough.  I did my regular scanning turnaround, and no students were in sight.  I walked up to the counter and said I had to pick up pills for Hazel Hillboro.  The pharmacist asked for my birthday, looked me up, and then went to go get the pills for me.  When he brought them back, I handed him my credit card.  He said, “Can I see your ID?  Actually, wait, never mind.  I know you.  You’re here all the time,” and he didn’t even look at my ID.

WHAT?!?!?

I wanted to protest.  “No, sir.  I am not here ALL THE TIME.  It’s not like I hang out here on the daily.  Also, this is totally unfair.  I don’t know your name, pharmacist.  I can’t access your birthday.  Hey, are you on any medications?  I feel like you should tell me all the things you’re on, since you already know all about mine.  It’s only fair.  Everyone knows drug deals should be a two-way street.”

Wait a second, are drug deals a two-way street?  I’m not sure.  Do people send their drug dealers Christmas cards?  Invitations to baby showers?  I don’t know too much about the illegal drug scene.  I’m on too many legal drugs as it is.  I won’t add any more drugs voluntarily, thank you very much.

I think this was a significant moment in my medical history.  MY PHARMACIST KNOWS ME.  Not only that, he classified me a being there “all the time.”  Those were his literal words:  All. The. Time.

Yes, I’m on a lot of medications.  I’m on one in particular that is ridiculously expensive.  That one’s for my brain tumor.  Any time there’s a new pharmacist, they raise their eyebrows at the total and say, “Ummm…are you aware of how much this drug costs?”

Yes, I am.  Your shock never makes me feel better about handing over that much money.  I could have gone all-inclusive to Europe on how much I’ve spent on that drug.  Trust me, I’m not excited about it.  I never want to talk about it, though, so I keep studying those oh-so-interesting floor tiles and say, “Yeah, I know.  I’ve been on it forever.”  And then the floor tiles get a little blurry and I start wondering when they’ll give me back my credit card so I can get the heck out of there.

I tried to justify the pharmacist’s recognition of me by thinking that maybe I’m the one customer who’s on crazy expensive pills.  Maybe he thinks I’m pretty, and that’s why he recognized me.  Right – that must be it.  I’m fabulously beautiful enough to leave an impression on this random pharmacist.

(Excuse me a moment.)

HAHAHAHAHAHAHAHAHAHA!!

(Okay, I’m back).

The hard truth of the matter is that I’m at the pharmacy quite a bit.

Of all the places to be a “regular,” I never would have picked my neighborhood pharmacy.  Why can’t I be a regular at Tiffany and Co. or a swanky wine loft or something?  I’m a regular at a pharmacy.  COOL.  My family would be so proud.  In the event that I ever do anything warranting an acceptance speech, I’ll be sure to say, “…and thank you to my pharmacist, who was always there for me, since I was at the pharmacy *ahem* ALL THE TIME.  He knew all about my secrets, but I didn’t even know his name.  What a tragic story.”

Starting tonight, I’m going to find somewhere really amazing to go.  Then I’m going to go there every single day until I’m a regular, and I won’t feel so losery about being a regular at a pharmacy.

Eight Years Lost

“I’m so glad you’re back,” my husband Andy whispered.  He gave me a tight hug and kissed my hair.

“Back?”  I asked. I was confused.  “I didn’t go anywhere.”

He looked sheepish, almost like he didn’t want to tell me.

“You know…just…back.  You’re yourself again, and it seems like you’re back for good.  I missed you so much.”

I immediately knew what he was talking about.  He’d mentioned something similar this past fall, when I first started on my meds for bipolar disorder.  I knew I hadn’t been myself for the past few years, but I didn’t realize how bad it had gotten.  “Was I really that bad?” I asked him.  “I don’t remember.”  I honestly didn’t.  “How long was I out of it?”

“Well, we were okay for a couple years when we first got together,” he explained.  “Then you sort of entered this…I don’t know…fog.  Every day you were either extremely sad or just…um…’out there.'”

I asked him what I meant by “out there,” even though I already knew.

“Like when you said you had to sleep in the back yard to ‘keep us safe,’ or when you locked yourself in the bathroom and thought I was going to kill you, or…you know…just…’out there.'”

“So when I was crazy,” I said flatly.

“I know you don’t like that word, so I don’t use it,” he responded.  He looked past me, as if he was unable to meet my eyes while talking about this.

“But it’s true,” I said back.   My voice wasn’t angry or sad.  I knew it was simply the truth. “I know I was crazy.  I was.  I am.  I don’t know.”

“I think you’re back, though,” he said.  He met my eyes again.  “When you were first feeling better this fall I was too worried to get my hopes up, but it seems like you’re really, really back.  There are good days and bad days, but overall you’re YOU again, and I could not be happier.”  He hugged me again.

“You waited an awfully long time,” I commented.  This year we will have been together ten years, and my brain tumor was diagnosed eight years ago.  We (and my doctors) think this could have been part of what caused the chemistry upset now diagnosed as bipolar disorder, so it’s logical to think I’ve been struggling with this disorder for almost eight years.  It went undiagnosed until this past fall, even though I’ve clearly had symptoms that entire time.  That means that out of a ten year relationship, Andy has had two years (well, now two and a half) with a woman whose brain actually works.  Eight years have been spent waiting.

“I know it was a long time,” he told me.  “But every single day has been worth it.  I knew that somewhere in there the real you still existed.  I would have waited decades to see her again, and it still would have been worth it.  I missed you so much.”

Which, obviously, makes Andy the best husband in the world, because I’m quite sure that he meant it.  He took eight years of hell on the outside chance that I might one day get better – on the chance that we would maybe one day solve the mystery.  He took totally delusional panic attacks, nights of me locking myself in the closet and crying/hyperventilating until I threw up, nights of my manically staying up all night writing because I-just-had-the-most-brilliant-idea, nights of me crying because I knew I was going to kill myself, the night that I actually tried…  He took all of that, and he still loved me.  He still loves me now.

I am genuinely, legitimately confused.  If I could break up with myself, I would have.  So, so, so long ago.

I am blown away by this kind of love, but I’m also angry and scared.  I’m angry that he had to go through this.  I’m angry that I had to go through this.  I’m angry that FOUR psychiatrists got this diagnosis wrong, when now I look at the symptoms of bipolar disorder and it’s basically a checklist of every symptom I told them.  I didn’t know to look for bipolar disorder.  They should have known.  They should have known those symptoms.  At least one of those doctors should have gotten it right.  Why did I have to waste eight years in a fog of depression, mania, and paranoia?  Eight years of my life, people.  It took away eight years of Andy’s too, because he had the misfortune of falling in love with the wrong girl.  Praise God that he stayed, but only God knows why he did.  This wasn’t fair to him either.  I don’t take much time to feel angry about all this, but to see how much Andy loves me and to see (from a standpoint of relative sanity) how much he’s been through, how long he’s waited, because of a condition that could have been detected years ago?  That makes me angry.

No, scratch that.  Angry is when a student forgets their homework for the third time this week.  This situation makes me livid.  I try not to think about it too much.  Anger will only take up more of my life, and I think I’ve been robbed of enough.

I’m also scared.  Andy’s right when he says I’ve been “back” for the past few months.  My personality is back.  I’m not paranoid anymore.  I don’t want to die.  It seems like maybe we’ve found a solution; like maybe I’m better.  Everyone I know who has bipolar disorder, though, says that this stable period only lasts for so long when inevitably the symptoms come back.  I don’t want to waste my life by worrying about the future, but I also want to be prepared.  I don’t know how, though.  How can one prepare to have their sanity taken away again?  I don’t think I’ll every be ready for that.

Eight years was too long.  I don’t want to lose any more.

I Have a Drug Problem

Most people who have drug problems have a problem with putting drugs in their body when they shouldn’t.  I have the opposite problem.  I hate hate hate taking drugs, even when (especially when) I really need them.

I’m not exactly sure why this is.  Maybe it’s a pride thing?  I want to be okay without these drugs.  I don’t want to need them.  The problem is, I do need them.  I need them for a variety of things.  I just hate taking them.  I can’t be the first person in the world with this type of problem, right?  The issue is, unfortunately, that this is a somewhat serious problem.  I can’t just not take drugs when I’m supposed to.  Theoretically.

It started eight and a half years ago with a brain tumor diagnosis.  It was absolutely terrifying for a little while, but I eventually learned that it was non-cancerous and “easily manageable.” As long as, you know, by “easily manageable” doctors meant frequent blood tests, MRIs, so many endocrineologists that I should make a facebook group for them, and a daily cocktail of drugs that makes me feel like a ninety year old. I have to use those weird daily sorted pill boxes that you see casually strewn about in nursing homes.  Oh, and now I also have a side dish of bipolar disorder.

Easily manageable.

Okay.

I’m not going to go through the history of the past eight and a half years right now.  If you follow this blog, I’m sure through pieces here and there you’ll eventually get the full story.  It’s actually pretty fascinating.  There are all the elements of a good read: true love, fake love, betrayal, near death experiences, secrets, loss, redemption, hope…you get the idea.  It’s just that living it is a lot different than reading it in a novel.  Living it is kind of a hot mess.

Which is why I need drugs.  I need drugs to keep my brain tumor from growing, and I need drugs to keep my bipolar disorder from turning me into a version of myself that I hate.  But… I hate them.  I have this internal battle every time I open a pill bottle.  It’s almost Shakesperean: “to take or not to take”?

Every time I have a good day, I wonder, “Do I really need these? Could I maybe be okay without them this time?”  And every time I forget to take them (really forgetting or just “forgetting”), the answer I find is no.  I am not okay without them.  Yet.

Think about being a kid in school – the one message you heard over and over again was “be yourself.”  Imagine a world where doctors tell you, “Take these drugs, because you can’t be yourself.  You have to be this drugged up version of yourself, otherwise you’re completely nuts.”  It’s strange.  It’s scary.  Who am I really?  The crazy me or the me on drugs?  WHO IS HAZEL HILLBORO?

Sometimes I look in the mirror and wonder about the person staring back at me.  She’s a stranger.  It’s very weird.

My psychiatrist tried to make me think of mental illness as more normal by saying, “Think of it this way – if you were a diabetic, would you refuse to take your insulin?”  I immediately said, “Yes, I probably would.”  My husband laughed, and my psychiatrist looked at him, startled.  I’m glad that he laughed, because it made me laugh.  I realized I’d given the wrong answer, but at least I’d given an honest one.  And if you can’t laugh at these kinds of things, you’re just going to cry.

I don’t know why I have such a mental block about putting foreign substances in my body.  Surely in any other case, this would be a good thing.  Unfortunately, for me it means that I make it more difficult for myself to get better.  Chalk it up to another piece of my crazy.  Hopefully another blog post down the road will explain how I got over this, and I now have no problem being in my mid-twenties and taking enough pills to fill a pharmacy.

That’s an exaggeration, but not as big of one as I’d like it to be.

Excuse me – I have to go take my 4:00 pills.

That one’s not an exaggeration.