when your pain isn’t travel-sized

Last week, I shared some lovely, Instagram-able pictures from my Florida trip. Now I want to get into a detail of the trip that I didn’t bring up before – the fact that health issues don’t necessarily take a chill pill just because you’ve headed away on what is meant to be a relaxing vacation.

I love traveling, but for the past few years the excitement of an upcoming trip has come paired with nervousness regarding how my body will handle the changes in my day-to-day life. When I went to Scotland in October, I had some very sore days that left me curled up on my hostel’s couch with single-use pain relief hot packs all over my body. I wasn’t upset, though, since I had given myself plenty of time to go exploring on days when I felt well enough. Plus, I was thrilled just to be in Scotland. Freakin’ love Scotland.

The stakes were a bit different with Florida. A lot of the aspects of a typical warm-weather getaway involve exposure to things that make my specific symptoms worse: being out in the sun & heat, spending a lot of time walking around, drinking (the fun drinks), eating outside my normal diet (the fun snacks), and sleeping somewhere I’m not used to. I knew that completely “letting loose” would be a bad idea, but decided to allow myself a bit of indulgence, since my symptoms play by no one’s rules, anyway. I can sleep 9 hours a night and eat salads all week and still end up in pain, so I wasn’t about to turn down a $0.99 margarita. (Note: I would like to update my research to reflect that my body gets along with tequila juuuust fine.)

Looking back, I’d say the most challenging part of this trip ended up being how hard it was to stay hydrated, but also not wanting to take too much fluid at once. Drinking a lot of anything too quickly is rough on my kidney, even if my body needs it. The day Sean and I went to the zoo, we could not drink enough water no matter how hard we tried. Granted, we spent an absurd amount of time at the zoo. It was wonderful. The day that followed the zoo visit and the day we wandered around Del Ray not knowing that the UV index was at 11 were hands down the hardest. All my body wanted was to lay down somewhere cool, but I also wanted to see and do as much as possible, and of course, make sure Sean got to do everything he wanted to do. Thankfully, I’m comfortable enough with him to say “no” to things. I did turn down some of his suggestions for the sake of not being miserable for days to come. While we were in Fort Lauderdale, a huge music festival featuring artists we both really like was going on, and Sean suggested we could go to that. Typically, we are “let’s DO IT!” people. However, the purpose of the trip was R&R and a full day of festival debauchery in the sun would not only be a huge, unplanned expense…but would likely leave us sunburnt, sick and exhausted. I’m grateful that each of us was able to remind the other that we don’t have to do it all and to find satisfaction in downtime somewhere a little more exotic than home.

While my body only misbehaved a little, my attention-seeking anxiety brain found lots of reasons to make an appearance in Florida! It started early – I had painted my nails a bright white before leaving to catch our flight, but I didn’t even make it to the place we were staying before I had peeled/scratched it all off. (This is one of my biggest anxiety tics. Do we call them tics? I can’t really paint my fingernails because the slightest chip or imperfection causes me to destroy all of my hard work.) Anyway, that’s what I get for making myself look trendy for the ‘gram.

As the trip went on and more money was spent on car services, sunscreen (so much sunscreen), snacks and various expenses, the more panic started to grow in my mind. It’s extremely normal to worry about finances, I know this, but anxiety takes everything to the next level – where one small unexpected purchase can push me to question/distrust everything…and then I’m itchy and lose my appetite and all in all it’s just not a fun me to be, or be around.

All flashes of pain and panic aside, the trip was a huge success in my book. Sloths were pet, oceans were splashed in, TONS of hockey and soccer games were watched, and Sean got some sleep. Maybe this is a weird comparison, but I feel a bit like a mom to my bratty toddler of a body. See, if I make sure I have some snacks and water packed when I leave the house, that I build time to rest into the daily schedule, and that I’m paying attention to red flag situations like expensive adventures or places where I’m going to feel pressured to push myself…everything goes pretty smoothly!

…I’m realizing now that not going on my college spring break trip might have saved my life. Y’know, being the type of person who is always trying to keep up with the rest of ’em, especially in those days. Thankfully, I am slowly but surely letting go of my need to please and impress other people. What matters is how proud I am of myself when I do something good for my body or mind, or when I pass on a night out and end up finishing a book or chipping away at a writing project.

Speaking of projects, I’m going to go ahead and spoil what would have been a cool surprise – I’ve decided it’s time to make an Instagram account for saorza! However…someone already has the account name “saorza”. I’ve done about all I can to try to get the username for myself, since the account is very obviously inactive. (If anyone has any friends that work at Instagram…let’s talk.) It doesn’t look super promising.

I’m open to suggestions, pals. Does anyone have an idea for a variation on “saorza” that would make a good Instagram handle? Alternatively, any ideas on how to overthrow Instagram? I mean come on. It’s a made up word. I don’t understand.

I appreciate any thoughts/suggestions and hope everyone has a wonderful weekend doing whatever it is you need to do. And stay hydrated. x

hey hi gotta go

Have I not posted this whole month? Oops? It has been a busy April, let me tell ya. First of all…

I moved!

I’m not going to go into too much detail about where I moved to, but I’m essentially in a better, more convenient version of where I previously lived. Also I have a new roommate. It’s Sean. We’re still figuring out groceries and laundry schedules and such, but I feel like we’re only really starting to live together today because for the past week we were…

…on vacation!

The two of us just came back from Florida last night. I didn’t take my laptop and there was no wifi most of the trip, and it was so NICE. We bounced around between West Palm Beach and Fort Lauderdale, but man does it feel good to be home. I’m not cut out for Florida. I like to be inside & cozy, or outside in the sun, but the Florida sun gets so oppressive that you have to stay inside and hide from it. I’ll retire to Scotland and read books to the sound of rain. Y’know, when I have a job to retire from. However, item #3:

I’ve been getting work!

Background work is such a nice option to have while I look for something steady, and I’m happy to say that it has really picked up since the start of this month (which is saying something, because I’ve just been gone for a week. Hair flip.) I’m actually in a slight rush to post this because I have to run off to a job later today and I need to squeeze in a nap so that I can function all night. Naturally, I’m a little under the weather after a week of different eating/sleeping habits and splashing around in all sorts of bodies of water. I was that gross sniffly person on my flight last night and the poor woman next to me, who was so kind and great to talk to, had no choice but to use my phone to organize her pickup at the airport. Honestly, I’m surprised she didn’t try to nonchalantly bathe herself in Purell afterwards.

Speaking of the woman next to me on the flight, I managed to learn about a very interesting malady from her. We got on the subject of weird health issues starting with heart problems, and ended up swapping tales of our experiences. I was so inspired to hear that my seat-mate, a woman of about 70, had somewhat recently happened upon the exact doctor she’d needed to see. This doctor knew to perform a test that involves eating (eggs and toast, in this case) and then laying on your side for two hours. The test proved the doctor to be correct in her assumption – my flight friend has gastroparesis. A paralyzed stomach. Her stomach just doesn’t do its job in a timely manner. How freaky and fascinating is that?! She told me that gravity is her best friend, to which I had to reply that gravity seems to be my mortal enemy.

I leave you with pictures to make up for the short and disorganized nature of this post, but it’s like the first workout back after a long break. Maybe you only manage ten minutes of cardio. Maybe your form is sloppy. But it doesn’t matter – you just gotta get back in the ring, right?


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?

spring meltdown

hellooo!

Two things. That’s all. I’m heading back home tonight in preparation for my venogram tomorrow morning, where I’ll find out what’s going on with this potential Nutcracker syndrome of mine (or not of mine). I feel like I’ve been spinning in place from my last appointment in February until now. Not knowing if I’ll need surgery has made it difficult to move forward, especially when it comes to job searching.

Thankfully, I lucked out big time with some acting work in the past few weeks that not only brought in a little income, but gave me the sense of productivity and of being a real person that I’ve been craving. I’ve also had distractions, the very good kind, in the way of a surprise birthday party and some unexpected time spent with people I highly enjoy. I did have some minor panic moments here and there and, in a sort of “grande finale”, I completely fell into the abyss on Sunday.

Sunday afternoon, I was ready to delete all traces of my life and move into an apartment in some town where I would just work and sleep and have no relationships or life goals. Because that’s not dramatic. Seriously though, I can poke fun now, but in the moment that always seems like what I have to do. I’m lucky that I wasn’t home and didn’t have access to a computer because I wanted to delete this blog…and everything else. I find it interesting that despite being aware that it’s not really me behind the wheel in those moments, I still believe that version of myself’s truths to be real. By Sunday night, however, my normal brain and my funky brain had reached somewhat of a compromise and decided on something that would actually help:

…s i m p l i f y.

I didn’t delete everything, but I deleted some things.

I’m not anti-social media because it has the potential to be used for good, but I do know that it can affect people very differently. At my most healthy, mentally, certain apps are nothing more than a huge distraction. When I’m in a different mental place, browsing through social media can be like throwing gas on the fire. I love to record moments of my life, and sometimes it feels like “what’s the point of recording these memories if I don’t share them?” I think we’ve forgotten how normal it is to share moments with our friends and family and not the whole world. My home growing up was full of photo albums, which were treasures and would never be as special to strangers as they were to my family. This is not at all to say that publicly sharing snapshots of your life is wrong or bad, but I personally fell into that inaccurate mentality of “the more people that see these portraits of your life, the better your life must be.” If I was using other apps for the same purpose that this blog exists, that would be a different story. But I was not. I was mostly:

  1. reliving my past through the posts of people I still follow
  2. feeling inadequate because I can’t afford the adventures or clothing or food that I see people posting about, &
  3. stressing over what/when to post to make people feel a certain way about me.

Anyway, that was a long road to get to the point that I got rid of Instagram and Snapchat. Insta, Snap…it’s not you guys, it’s me. Well, it’s also a little bit what you’ve turned into. But I respect you. I’m just terrified of you and what you do to me. Will I come back? Maybe, when I think I can handle it. I’m just a little too distract-able and impressionable right now, that’s all.

I kept Tumblr, who has never done me wrong.

I brought this up in my last post (I think?) when I wrote about having a kit for the bad days. I’m a very visual person, and for seven years I’ve had a Tumblr account where I’ve collected things that catch my eye and attention. It’s never been a competitive thing for me, and that’s been really nice to have. It’s full of pictures of old buildings, artwork, fashion photography, cups of coffee, FOOD, animals doing things, quotes, poems, the occasional PSA, really weird meme videos that no one ever reacts well to…anything that gives my brain a little happy spark, or that I find really important.

So I did a thing. I re-vamped my Tumblr, making it a sidekick to this blog. They were already working together to achieve the same sort of goals, in a way, so it makes sense to share the page with you.

…but of course, when I changed my Tumblr name the url “saorza” was already taken, so if you come across that one, it is NOT ME!

It’s called calm & collection and because I redid the whole thing, there’s not a ton there – yet. I’m not doing anything differently compared to how I managed the page before…it’s still my collection of doodads, gathered together for myself above all else. Give the page a glance, or don’t, but I want to give credit where credit is due: thank you to Tumblr for simply being there, and to everyone who uses it to take care of themselves & others.

One more time, I’m giving the link its own block:

calmandcollection.tumblr.com

And now, I leave you with some pictures from March so far. See you on the other side of the venogram.

25 before 25

It’s a list! Like Taylor Swift’s…but with a twist.

I was at a loss (again) for what to write while I wait for my next appointment/procedure, when I came across Taylor Swift’s “30 Things She Learned Before Her 30th Birthday” article in Elle. This was a great find because I happen to be turning 25 in a little under a week – woop woop, Pisces friends. I’m not a big birthday gal anymore, since I had the best parties as a kid and got that out of my system. By best parties, by the way, I don’t mean the glitziest or that I had tons of guests. My mom was just great at tailoring themes to my weirdness.

I don’t want to blatantly copy Taylor’s idea with 25 things I’ve learned before 25, so I give you…

25 Health Lessons I Learned Before 25

  1. Write everything down: You’ll have much better luck identifying trends and going head to head with doctors who challenge your symptoms.
  2. Flavored water: I’m the worst at drinking enough water, but I love flavored sparkling water. When I’m feeling bleh and know I’m not hydrating properly, I head to CVS and load up. It helps me feed my sweet tooth, as well, without doing myself the disservice of getting back on the soda bandwagon.
  3. Hot packs (and ice packs): The loves of my life. The ones with straps that allow me to hobble around the house (or sneakily wear them under my clothes in public) are even better.
  4. Always have snacks in your purse: Especially salty snacks – gotta keep the dizziness at bay.
  5. Always carry bandaids: This one is less personal and is more of a general fact for women. Will they ever stop making shoes that are designed to hurt us?
  6. Keep the receipt for your copay: Hospitals and urgent care centers love to send me bills after I’ve already paid for my services in the office. I used to just pay them the second time and they would pay me back, and we would have this nice little back-and-forth.
  7. Defend your preferences: I had a horrible, painful reaction to morphine the one time it was administered and the nurse told me to tell future nurses that I’m allergic. Every time I do this, I’m asked how I know that I’m allergic and what happens, and I used to feel bad for saying “well, it hurts” as though that isn’t reason enough. Not gonna lie – I fluff up the story a bit now. I was close to blacking out from the pain that shot up my neck and into my head, so whatever I think is necessary to avoid that, I’m going to do it.
  8. It’s okay to ask to schedule around that time of the month: Woo, being a lady! Maybe this is just me, but I never thought to do this before. I used to just hope for the best. But, after a particularly awkward OBGYN appointment, I thought to bring this up when my vascular doctor scheduled a procedure about a month out of the appointment I was in at the time. She was glad that I did, and honestly, there was nothing awkward about it whatsoever. Why haven’t I been doing this from the start??
  9. You can explain yourself without apologizing: I’m still working on this one, but I’ve improved over the years.
  10. Skip mass transit if you have to: I hate to spend money, but I’ve learned that sometimes I have to prioritize getting home quickly and safely. This has involved taking a car service or a cab, at times. I’ve finally stopped beating myself up for doing this.
  11. Be open about your food concerns: There are times when I know that I need to eat very lightly or carefully, whether it’s due to pain or due to nausea that turns me off of my favorite foods. It’s such a relief to feel comfortable enough to explain to close friends and family why I can’t eat particular foods at particular times. Plus, it can actually be helpful to have a real response to “I don’t care, what do you want to eat?” Wellll, let me tell you…
  12. It’s okay to sleep at unconventional times: Louder for the people in the back! Needing a nap does not make me a child. It does not make me lazy. It means that my body is working a little harder than usual and needs a break before a breakdown. Sleep in general is super important, of course, but making peace with having different needs from others has been huge for me.
  13. The internet isn’t (always) bad: I’m grateful for my academic background because I know how to go about research in an informed manner. I know the signs of a factual, science-driven publication versus…well, the other stuff. I, like many others, have let WebMD diagnose me with a long list of fatal illnesses in the past. However, I’ve also found a lot of great information in public forums. If you know how to assess a source and take everything with a grain of salt, the internet can be hugely helpful.
  14. Always get the DVD copy of your MRI/CT/what have you: I mentioned this in my last post. You never know when you’ll need it.
  15. Never assume that the doctor “would’ve” or “should’ve”: I asked at my last appointment if my surgeon from the original kidney surgery would have seen evidence of Nutcracker syndrome when he was operating in that same area. My vascular doctor said no. I have also assumed that I’ve had certain tests done already because my kidney has been under investigation for so long – also, no.
  16. Ask for clarification again…and again: Sometimes I zone out and start in with the nods and “yeps” while a doctor dumps information on me. An example: that time my primary care physician told me that my heart doesn’t draw blood back as quickly as it should and then carried on with his checkup…what does that mean? Is that called something? Now I make sure that I don’t leave an appointment without enough of an understanding that I could potentially explain the situation to someone else.
  17. You can say it’s time to stop when things are getting a bit out of hand: I’ve let a nurse spend an hour trying to insert an IV line in about seven different spots along my arms and hands. I let another nurse struggle to place two catheters (TWO?) for much too long before telling her that I’d rather just do the scan without one. Don’t let your desire to be a nice, easy patient keep you from remembering that you are ultimately in control.
  18. Know your safe places: Living in a city, it’s helpful to know where I can go to sit down if I’m starting to feel a bit off while I’m out and about. There are parks everywhere, but in the colder months I’ve utilized public libraries, specific coffee shops that tend to have seats available, Sean’s workplace, and certain train stations where there are plenty of benches. Keeping a few of places in mind gives me a safety net – peace of mind for my anxiety brain.
  19. Have a “kit”: Speaking of anxiety, I have a “kit” on my phone made up of things I found while in a good headspace that I’ve saved for times when I am not. It’s mostly art – photos, videos, poems and posts that never fail to pull the curtain back a bit when I’m stuck in the dark. There are also apps I use to distract myself, such as Sudoku and Tumblr, which help me focus away from unwanted thoughts at night so that I can get to sleep.
  20. A little exercise is better than none at all: I love going to the gym, and I feel my best when I’m in a routine that involves going to the gym nearly every day. Whenever I’m feeling sick for an extended period of time or have an injury, I fall out of that routine. I used to lose my motivation completely during these times. Currently, my cardio is limited to walking, so I’ve been making sure that I keep up with my floor workouts at home. This isn’t the level where I’d like to remain, but that’s okay. Getting back in the gym will be amazing, but I can make my smaller efforts in the meantime.
  21. You can say no to medication: You. Can. Say. No. To. Medication.
  22. Don’t put all your eggs in one basket: Just because a diagnosis seems probable does not mean that it will definitely be confirmed. Heck, I’ve been officially diagnosed before and had the diagnosis revoked. Multiple times. Be open to change, always always always.
  23. You might need a third opinion: I’ve seen a lot of specialists. A lot. I’ve been dismissed, and I’ve been told that there was “no way” certain conditions could even be considered. It happens. Guess what? You can “thank you, next” a medical professional. I’m definitely not saying that you should cycle through doctors until you find the one who tells you what you want to hear, but if you’re truly not convinced by one person’s opinion, go forth and keep pushing.
  24. Gloves: My hands are never going to be a normal human temperature. I accept this. I’ve stopped questioning whether or not I should take gloves with me when I go anywhere. The answer is always yes.
  25. Live like your world could be turned upside down tomorrow: I try to imagine the changes I would make in my life if I was ever given life-altering news. What would I do differently if faced with a situation where I could lose my current abilities and opportunities? We hate to think about this, but none of us have any particular amount of time guaranteed to us, and I am not saying this to be grim. I’m saying this because I’m now realizing that the most important thing I’ve learned from my experiences is that if you’re waiting for someone to tell you that time is running out – don’t. Do everything with that source of motivation, and watch how your life changes.
Looking at 25 like “seriously, try me.”

I always knew mozzarella sticks were the answer

Yesterday’s MRI was not my first (or even my first with contrast dye) by any means. However, it was the first MRI I’ve had where I found delightful pictures of beaches and coastlines taped inside the big, boring, clanking machine for patients to look at. I pictured a healthy and wealthy version of myself on vacation in Greece when I wasn’t following breathing instructions. Afterwards, the techs asked me how I liked my newest doctor (the one who ordered the tests) and the three of us agreed that she is the best.

My follow-up was a couple of hours later which was an amazing blessing. I like to fit as many tests and appointments into the same day as I can since I live irrationally far away from all of my doctors. Also, quick pro tip: whenever you have imaging done, always request a DVD copy that day! I almost forgot to do it this time, but it was a good thing I doubled back to the hospital because the images hadn’t made it to my doctor by the scheduled appointment time. They ended up referring to the copy I brought with me.

After reviewing my MRI, the doctor came in ready to draw me a picture – literally. She explained that I showed signs of possibly having Nutcracker syndrome. My left renal vein might be slightly squished between my superior mesenteric artery and my aorta. This is her chair paper (you know, doctor’s chair paper? the loud, easily crinkled stuff?) depiction of the condition:

Dr. O.  Nutcracker syndrome. 2019, pen on chair paper.

The circular thing is my problem kidney. I think it’s actually a very straightforward drawing. Anyway.

I have to go back for a venogram in mid-March, which is a long time to wait to see if A) it really is Nutcracker syndrome bringing me down and B) if it is, is the vein narrow enough to warrant surgery. She started talking about surgical options and stents and how stents aren’t great because they can move out of place, and I gave her a look that she understood right away – “let’s just get this venogram done and then we’ll think beyond that.”

The thing that I find very intriguing is that this diagnosis would actually explain my most puzzling symptoms.

Chronic fatigue is a sign/symptom of Nutcracker syndrome (among many other conditions). My excessive and sometimes intense fatigue has led my primary doctor down the autoimmune disease road many times, but those tests never came back positive. This would explain how I’ve fallen asleep in some impressive places. Like dance class. Multiple times.

Orthostatic intolerance is also a sign of Nutcracker syndrome. I’ve known for a year or so that I have orthostatic hypotension (I might’ve never mentioned that here), but what I did not know is that alcohol can make it worse. The night of the hockey game I was sitting for a long period of time, sipping away on my beverages, after my kidney symptoms had already been acting up. When I stood up to leave (key words: stood up), that’s when all hell broke loose. Hypotension can cause confusion and nausea, not just lightheadedness and fainting. Think back to the stroke incident as well, as an alcohol-free example: I had been sitting at my desk all morning and then stood up to go on break. A short while later, I struggled to remember how to spell my last name.

These are just some of many connections I’ve made, but I can’t emphasize enough the fact that I am not officially diagnosed. Yes, Nutcracker syndrome makes sense, but so have one hundred other suggestions. I enjoy the research because I like to see how my puzzle pieces might fit together, and I do see a picture this time. Still, let’s stay calm. I have bigger fish to fry in the meantime (a proper job! still trying to move! my other writing projects!) so it should be easy enough not to think about this.

In other news, after texting my dad my findings, I told him that I think I could go to town with drinking now, I just need to move around and eat a lot of salt throughout. He wasn’t sure if I was kidding, which is slightly concerning…but then again, I’m only sort of kidding. It’s an experiment I’m in no hurry to try, but in a serious and less aggressive sense – those two adjustments might genuinely help me handle average human amounts of alcohol.

In conclusion, I’ve developed the perfect excuse to always order mozzarella sticks on a night out.

**Please do not actually attempt my “experiment” if you have orthostatic hypotension and/or alcohol tolerance issues. I do not condone excessive drinking. I’m just trying to be honest about my thought process, & promote using humor to keep things light & avoid too much stress or worry. That is all. Thanks friends!

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…