hit “play”

This is the longest I’ve ever put my life on hold, and all to find out that I do not have Nutcracker syndrome.

It’s not entirely accurate to say I put my life on hold, I suppose. Some wonderful things have happened over the last few months. It might a better analogy to say that this is longest I’ve held down the pause button on my own timeline, even though I’ve been able to participate in other people’s timelines as they move forward.

It has been one week since my venogram revealed my left renal vein’s truth – he’s just not that constricted. He’s a normal amount of constricted. He’s basically chillin’. The good news is that even if it appeared that I did have Nutcracker syndrome, it is unlikely that I would’ve been able to undergo corrective surgery because I have so much scar tissue in that location from my last procedure. The not-so-great news is that this line of inquiry is now closed, and I am back to a blank whiteboard.

Honestly, I don’t want to think about any of this anymore.

Truth be told, I would like to just stop. I want to stop with the bus trips and the copays and the blood work and the imaging. I want to stop living appointment to appointment. I want to prioritize financial stability, a healthy routine, and contributing equally to my relationship. I want to do all of this without the same old cloud hanging over me – the fact that I’m waiting for someone to tell me how to take care of myself, how to stop making my body so angry at me. My body has been this perpetually crying baby that can’t communicate what it wants me to do, regardless of how simple that need might be. Is it sleep related? Food related? Positional? An environmental trigger? I don’t understand!

When I don’t understand things, I lay on the floor. There’s a lot of healing power in laying on the floor. I spent Tuesday morning on the living room floor with what started as a sort of meditation, which triggered the urge to write out everything that was going through my mind.

I took pictures because I was so content in my lil’ sun spot and LOOK WHAT HAPPENED! I caught a lens rainbow! Right over the bit of writing I had just busted out. (And my coffee, obviously.)

Aside from the rainbow, I’m not going to pretend anything magical happened. Writing didn’t fix everything. I gave in to frustration crying later that same day. I’m still tensing up every time someone asks the tiniest question to do with my plans. I keep falling off the anxiety ledge and either pulling myself or being pulled back up – but I haven’t made it very far away from the edge yet. Doing a little something for myself on Tuesday, though, led to me doing a little bit more on Wednesday, and now today I’m starting to feel even a bit more settled and motivated. “Focus on days,” says Austin Kleon in one of my favorites, Show Your Work! …and that’s what I’ll do. A single healthy, productive choice per day over whatever may be its alternative is progress.

Pre-venogram, 3/20.

This is a woman who thought she was going to get knocked out and wake up with answers and next steps. I was also definitely thinking about the coffee I would get when this was over. I didn’t get answers, but I got the coffee. I did some shopping with my dad. I ate Sonic for the first time (never again). Then I went home, let Sean calm me down a bit, and went to sleep.

You can’t rush anything.

You can’t. rush. anything.

So for now, let’s move on with heads held high, shall we?

a bit dramatic for a lunch break

“Picture it. New York, February 2018.”

I was plowing smoothly through my morning at work, having sat down at my desk at 7am and not having moved much since (as per usual). There was nothing especially stressful about this day in relation to work, but I was experiencing waves of pain and discomfort throughout the morning. There was an ache and tightness wrapping around my rib cage, coupled with a fogginess that was causing me to wonder if my blood pressure had dipped way down beyond its standard low. I counted down the minutes to my lunch break and when it finally rolled around, I walked away from my desk to see if standing and walking would resolve any of the pain/discomfort. It did not. I felt like I had been slammed into a wall. The pain in my chest & back doubled, and the fogginess started to feel more like a drunkenness, or even a partial sleep state. I managed to call my dad (because I love a second opinion) and we agreed that I should pop over to urgent care to get my vitals (namely my blood pressure) checked.

I wandered around the corner and into the urgent care facility where I had the nurses assure me that I would be seen quickly enough to make it back to work on time. I was led into a room where I honestly don’t even remember if my blood pressure was taken, but my description of my symptoms led to the doctor performing a strength test on my left and right side.

I don’t know if this has come up before, but a recurring symptom that acts up when I have these odd “spells” is that I lose strength in my left side. It gets harder to hold things in my left hand, or lift my left arm, my left eye will even get a bit sleepy…left side, weak side.

Unsurprisingly, my left side struggled during this strength test. The doctor told me I needed to go to the emergency room and that they would call me an ambulance. I’m fairly sure she said lots of other things and that I had other symptoms going on that were being taken into consideration, but my memory of this part is hazy. When I’m in a very intense amount of pain, which I was by the time I was in the room with the urgent care doctor, it’s always a little bit like a blackout. It’s as though my mind doesn’t want me to remember anything that was going on while the pain was that strong, even though I had to keep functioning and keep pushing through. Isn’t childbirth like that? They say women forget the pain. I believe it.

My only strong memory of the urgent care portion of this day was that I refused to let them call me an ambulance. One thing I learned in college was that you never let anyone call you an ambulance. I don’t even know how much it would’ve cost with my insurance but I’m pretty sure you’re talking several thousand dollars in most cases.

(**Sidenote: I hope I don’t have to say this, but please do take an ambulance in an emergency situation. I’m cheap and ridiculous but you shouldn’t endanger yourself following my example.)

I called myself a Lyft, and the very concerned driver schlepped me to the emergency room a few blocks away. I was sure to convince him that I was not the type of sick to be a vomit risk, because I like to think that would put a driver’s mind at ease.

Arriving to the hospital…I don’t remember that very vividly, either. I know that I was there and trying to hold a coherent conversation for probably less than a minute before the man at the front desk called a stroke code. I was whisked away and strapped to many things. There were tests. There were questions, which I answered in a nonsensical manner. I remember feeling incapable of shutting up when a nurse asked if I had any food allergies and I started on this rant about almond butter. I’m not allergic to almonds, I just…I don’t know what was going through my head.

I also took this video.

An hour or so later I was told that my tests were looking alright, but I needed to be moved to the actual hospital uptown for further, more detailed tests. You can’t be too careful with stroke symptoms – I get that. The doctors said I had no choice this time and that I’d have to ride to the hospital in a transport vehicle – like an ambulance, but without a lot of the bells and whistles. My two transport guys (what do you call these people? sorry fellas) were lovely young men with thick New York accents who debated the best neighborhood for Mexican food my entire ride. I was glad they were so outgoing and humorous, but as a lover of Mexican and having not had the chance to actually eat lunch on this lunch break, this was torture. The distance between the two locations wasn’t very far but there was 1) traffic, obviously, 2) we had to cut through Central Park where Olivia Culpo was having a casual photo shoot and 3) we were flagged down on 6th Ave where a pedestrian was hit by a car, but we weren’t able to do anything because we weren’t a proper ambulance. The pedestrian seemed mostly okay, I’d like to add. But still, I told the guys I’d get out if they wanted to take her.

…my attempt at an escape did not work.

Things were smooth once I made it to the hospital. I met the neurologist assigned to my case, who ordered more tests which were performed over the next day and a half. The literal angel that is Sarah came to visit me and brought me all kinds of delicious goodness from Dos Toros (and not a minute too soon), and I had a nice view of the city from where I was posted. Oddly enough, there was a painting by a distant relative of mine with the same surname on the wall in my room. He’s “famous” but not a household name, so that seemed like a strange coincidence. It had a strangely relaxing effect, as well, as though I had family there in the hospital with me.

After having a TEE (transesophageal echocardiography – pictures of the heart taken via a camera down the esophagus), I was actually diagnosed with something. Ding ding ding! In that moment, I thought everything was finally about to make sense.

If you’ve never heard of an arteriovenous malformation (AVM), they are well-explained in the article I’ve linked here. To quote this article directly (& please see the link for credit), an AVM “refers to arteries and veins with abnormal connections between them” (UCLA Health). They come in varieties such as pulmonary and coronary, to name just two.

The TEE revealed that I had an AVM. I was told that it was a “pulmonary AVM of the heart.”

Pulmonary….of the heart.

Lung problem…of the heart.

It took my dad and I too long to figure out why the information the two of us dug up on this condition was so inconsistent. He was looking at pulmonary AVMs and I was looking at AVMs of the heart.

I saw the pulmonologist two months later (getting time off of work just wasn’t happening) and he ordered some images to see the size of the AVM. I don’t recall asking him about the heart vs lungs thing, because truthfully, I was probably tired and in a state of being fed up with everything. The images were taken that day and it took until I was back in the ER a month later for a doctor to reference the results: “oh, there’s nothing there.”

The “AVM” was no more.

Queen of the “I was actually just kidding” diagnosis.

A few months went by before I received two bills – one for $700 and one for $48,000 and change. My regional insurance provider was not a fan of my having tests done at a hospital out of network. Thankfully, I was eventually able to convince my insurance provider that all of the stroke tests were a continuation of emergency room services (as they were), and I’m still to this day wondering if/when I’ll get a new bill for that visit.

Why is all of this important? Honestly, I don’t know. Maybe it isn’t. Maybe it was just a kick in the ass forcing me to recommit to my quest for answers. I don’t know much more now than I did then, but having that incident on my record does enforce that something is wrong – something beyond my control. Shame me for having a few drinks and feeling a bit off, sure, but for this to happen in the middle of my workday…

I’m seeing the vascular doctor next Wednesday and I’m curious what he/she will make of this event and everything else that’s happened. There’s no vascular-related condition that I’ve ever wondered about potentially having, but my primary care doctor has pointed out some quirky heart behavior of mine in the past. Also, this is the doctor my nephrologist wants me to see before he digs any deeper into his own investigation. I have no agenda or questions going into this appointment – it’s so low stress compared to the OBGYN, it’s delightful.

In other news, my favorite non-alcoholic beer since the omission of alcohol from my life is definitely Krombacher! It’s hard out here being a non-soda drinker who wants something besides water at a restaurant. I drank about a gallon of iced tea at one place the other night and felt like a giant soggy tea bag well into the morning. At least when I’m nursing an alcohol-free pint, it looks like I’m as fun as everyone else at the table. And who likes water, anyway?

I’d love to hear some other NA beer suggestions if anyone has them! What I really miss is wine, but I’m curious how other folks choose to handle this situation where a lot of your socializing takes place in group settings in bars/restaurants. It’s unavoidable where I live, but I’m working around it.

Until next time…

hospital aside, A+ day!

me, January 1st: new year, new me #health

me, 2am, January 3rd: wakes up in the emergency room

Just to start out on a positive note, January 2nd was an awesome day. It was a total bro day, if anyone remembers How I Met Your Mother back when it was lighthearted and full of laser-tag. I was taken out for a great breakfast, brought to a go-kart track where I did NOT come in last place, wandered around my favorite library, had a lovely & cozy dinner, and then saw my NHL team win 7-2. All with somewhat enjoyable company, to boot. You’d think I was someone’s beloved elderly pet about to be put down, the way this day was arranged.

The evening took a minor turn when I fell sick and had to be carried (I think? or dragged?) to the hospital. Two hospitals, actually, because apparently the first one was closed.

I don’t remember what happened, which is hard to admit and a little bit scary. I remember leaving the game, but not running into a bar restroom and getting sick, and definitely not anyone climbing into the stall to get me. I don’t know how I got to the hospital…and to me, the strangest part is that I don’t remember any progression, of neither pain nor drunkenness. I also don’t remember any point where I thought I was anything other than completely fine.

Full disclosure: I was drinking during dinner and the hockey game, which paints this whole situation in a different light. When I show up to a hospital hobbling around like a drunk, wounded animal and I’m sober, that’s major cause for concern. When I’m brought to a hospital in that same state and I’ve been drinking, there’s not much interest in investigating what’s going on. And I get it! I get how it must have looked. I’ve had those college experiences, guys. I’ve absolutely drank beyond my limits before. I’ve even thrown up after drinking. However, I have never had any drinking experience that felt like this, or transpired the way that this went down. The closest incident would be my first ever ER visit for this same pain, when I had two beers and then we discovered my misshapen, hydronephrosis-ing kidney. And I was told that I had massive kidney stones but then the doctor took it back.

I’m grateful that I wasn’t alone and that Sean took action by getting me to the hospital, which was clearly no easy feat. Still, I can’t help feeling disappointed in the outcome of the night because I try to be strategic about my hospital visits. I feel like I’ll only make progress on getting some answers if the doctors catch my kidney (or whatever godforsaken organ it is now) behaving badly, but I’ve had those experiences where I’ve gone to an emergency room and they don’t have the right equipment for imaging, or it was so busy there that by the time I was seen, my body had calmed down on its own. I had this dream that if I went back to the emergency room, it would be the last time – they’d finally find it. I truly believe that if they had done an ultrasound on my kidney this past visit, they would’ve seen some interesting and potentially informative things. Anyway. Maybe next time!

The pain was still very present throughout the course of the next two days, although Sean went hardcore nurse mode on me and definitely helped bring me back to life. For whatever reason, as the kidney pain chilled out, I quickly came down with a bad cold in its place. The really nice thing about colds, though, is that I know what they are when they happen AND they go away.

I still believe I might know what’s going on with this sudden spike in painful episodes. I’m away from the city now on operation clean the old house, as well as to get some doctors appointments taken care of. In a shocking twist, I actually pulled myself together enough to go out for my engaged friend’s bachelorette party last night, which I’m so grateful I was able to do while I’m here. I slugged straight seltzer all night but I dance so poorly naturally that I don’t think anyone questioned what was in my champagne glass. I woke up to the ol’ pain around 4am but was able to fall back asleep (thanks to my badass aromatherapy sloth) and the rest of today went pretty smoothly.

Time for my uplifting moral of the story, friends:

There’s a lot of shame in this game.

No matter if it’s alcohol, caffeine, gluten, whatever – there will always be people who think I should just do less of this or more of that, and that I’m still suffering because I’m not disciplined or invested enough to make those changes permanent. Listen, if cutting out any of those things had ever proven to help, I’d be more than happy to make that a permanent lifestyle change. They just…haven’t. If this experience has taught me anything, it’s that I need to stand up for the way that I take care of my own body. As anyone should, y’know? And because everything seems so fragile right now, I’m not going to drink at all until I get some answers. As we know, I’ve had plenty of weird occurrences without any alcohol in my system. This most certainly is not a sure-fire way to keep my pain at bay. It just seems like the intelligent thing to do right now.

Well. Fingers crossed we’ve solved this problem by the playoffs.