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…

but are you SURE it’s not a piece of glitter?

This feeling that I’ve had all week is familiar, but I don’t have a name for it.

Disappointment is close, but isn’t quite right. Perhaps a form of disappointment that’s under the umbrella of simply “tired” with a splash of “whatever” to it.

I’m on a break, basically. I have to pause for a little bit.

I know this must sound wildly unhealthy but I assure you, this is something I need to do to preserve what’s left of my sanity. I had my two appointments, one with a nephrologist and one with my gynecologist. They were…not exactly motivating.

The nephrologist had some theories but wants me to see a vascular specialist before trying anything himself. He wasn’t opposed to my theory, which I’ve been withholding from you because I’m probably wrong and I hate being wrong, but will now share: ureteral endometriosis. Basically, endometriosis, but the affected area is your ureter as well as your cervix and all of that angry & misplaced tissue can send your kidney into hydronephrosis. It can also cause recurrent UTIs. A very informative (and science heavy) article about this peculiar variety of endometriosis can be found here.

As per the nephrologist’s suggestion, I brought up ureteral endometriosis (UE for writing’s sake) at my gynecologist appointment several days later. My gynecologist’s office makes me very nervous, by the way. Not for the reasons you’d think. I want to give my OBGYN the benefit of the doubt that she’s actually lovely and she just uses up her patience in her other appointments, because I always feel like I’m bothering her by having any inconvenient problems or questions. Before even bringing up the UE, I asked about something else which led to her asking “could it be [blank] ? are you sure it isn’t [blank]?” Without getting into major T.M.I. territory – these were really, really obvious questions. Imagine going to a dermatologist for a weird mole you’ve been keeping an eye on for a few months and having the dermatologist ask “are you sure it’s not a piece of glitter? …and it’s not a dot you drew on yourself by accident with marker?”

Eventually I got around to bringing up UE, simply explaining that quite a few of the symptoms were in line with what I’ve been experiencing. She hadn’t heard of endometriosis of the ureter before…which, I swear to God, was fine with me. Was I a little surprised? Alright, yes, a little…but it is a rare condition and not even a doctor can know about every condition in their realm of study. Right? It’s fine? It’s fine.

I was ready to move past that, but damn if she didn’t start right in with “well I don’t know if they’ll want to just do surgery for that,” after I had not brought up any interest in surgery whatsoever. I ended up backpedaling: “oh no, no, that’s alright, I’m really just looking to talk to someone about it.” Meanwhile, the look she’s giving me is making it very clear that she will not be the one who has this discussion with me. I’m told to set up an appointment for the end of next month with a different doctor in the same office. The “surgeon,” I guess. The best part of this whole visit was the receptionist asking why I was setting up an appointment to see the surgeon as I was signing out. When I told her, she said…I kid you not…

“Oh…I don’t know if Dr. [Surgeon Guy] deals with that. That sounds like urology. Have you thought about seeing a urologist?”

…ma’am.

Anyway, I saw myself out and went across the street to CVS to look at Valentine’s Day cards, where I ended up quietly raging/soft crying while wandering the entire store for 45 minutes. Sometimes you need to allow yourself that quiet rage moment, let a few tears out, and heck, buy a face mask if this is all happening in a CVS. Side note: I bought one face mask and walked out with probably $50 in coupons. Incredible.

So. I’m taking a little break. Not from the blog, but from the pursuit. I’m going to continue my cleanse of all alcohol, keep track of any pain flares, and take things one day at a time. I’m keeping my two February appointments with these two new doctors, but I’m keeping my expectations at the lowest of lows. It all sounds so pessimistic, doesn’t it? I’m actually happy, believe it or not. The year is just beginning and there’s so much I want to do.

Also, I’m perfectly content with not being a comment-heavy blog, but if anyone ever has questions or anything you’d like to share, please feel free! Or, if you’d like to suggest a topic for a future post (& I do plan on writing about last year’s wacky hospitalization, misdiagnosis and $48,000 hospital bill very soon) I’m open to that, as well.

Enjoy your three-day weekend if you have one!

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.

välkommen, år av grisen

Thinking about a whole new, fresh, unsullied year laid out in front of me is overwhelmingIt’s a good sort of overwhelming, though. Not to get all sentimental on everyone but 2018 brought me more than I expected, & things I didn’t know I needed. I’m using the word “things” very loosely here, referring to experiences, relationships, realizations – all of that wholesome stuff. For your viewing pleasure, I have narrowed the year down to sixteen pictures, from pageants to hospitals and everything in between.

from top left, clockwise: 1) Miss NY USA 2) Accepted a grown-up job 3) Hospitalized on my lunch break 4) Visits with hometown friends 5) Reunited with my pageant love 6) First date with some idiot who drew on my hand 7) First NY baseball game 8) Concert for pre-teens with my best friend

One of the best things about this year is how much time I was able to spend visiting with my favorite people: friends from home, friends from college, pageant sisters (well okay, just the one). It was a goal of mine to put more effort into making time for the people who make my life more whole and holy crap, I actually sort of accomplished it. ?!?

same: 1) moving out of the apartment I had literally just moved into because I quit the grown-up job 2) London! 3) Lake George 4) Panorama 5) Polo and burgers and pints 6) Newport, RI 7) SCOTLAND 8) Christmas, AKA food and naps and food and naps

That empty room picture in the 2nd set seemed necessary, to acknowledge that I achieved my 2018 goal of moving out (yay!) aaand then had to move back to my old place a month later. These things happen. BUT, shortly afterwards I went to London, took my first trip to Newport, went back to Scotland (never going to shut up about that) and had a great end to the year.

All in all, I’m extremely pleased with the way 2018 progressed. Sarah and I had our annual coffee/snacks/New-Year’s-list-making session a few days ago and created our own outlines for 2019. Drum roll, please…

  • Be nicer to your teeth. Your enamel situation is scary. Do better.
  • Approach your personal work (writing, this blog, artistic endeavors) as if it’s paid work. Schedule it into your calendar like you’re working a shift.
  • On that note, finish your screenplay.
  • Rebuild your ankle strength. We want to have the option to wear heels in the future.
  • Read 24 books. That’s 2 per month. Honestly it’s kind of pathetic. You can manage this. Also, use Goodreads to keep track.
  • Be in a position to start paying your student loans by the time fall rolls around.
  • Actually use your budgeting app and any other budgeting methods to see that you stay on track to meet your financial goals.
  • Speaking of apps, use Duolingo again. You were getting weirdly good at Swedish.
  • Embrace the library.
  • Your job requirements (and I don’t care if this is part time or full time or whatever) are that you receive BENEFITS & a STEADY CHECK. …or start making enough money to pay for insurance out of pocket, if it isn’t provided. You really just need to get this insurance situation together. 
  • Stop buying cheap stuff that falls apart. This is mostly in regard to clothes. Wear what makes you feel good, and we know you feel best when you’re not feeling shabby. 
  • Use all those beauty products before they expire rather than taking five years to use one mascara. Why do you have so much makeup? You don’t wear makeup. #stopbuyingmakeup2019
  • Sew the godd*mn T-shirt quilt, it has been literally four years.
  • Have a travel savings for 2020. 
  • Have 100 followers on this blog. A reach? Probably. Still a goal? Sure.

I think this is a good start. I’m also stealing a few right off of last year’s list, because I did not meet these goals:

  • Take more pictures with friends and loved ones. Those sunset pictures aren’t going to make you feel the same way twenty years down the road. You’re cute. Your friends are cute. Take some dang pictures even if it makes people groan.
  • Make some headway on learning to cook, please. I’ll give you simple goals: try cooking a steak, making a sauce from scratch, and an Indian recipe. Maybe your own masala sauce? You can’t keep eating oatmeal and frozen peas. 
  • Develop better cleaning habits. Make yourself a chart if you have to. You’re a clean person but you are forgetful and I know you put cleaning on the back burner when you have other things going on. Put it in your schedule. You’re good with schedules.
  • Take some Red Cross classes. Get yourself connected with the right regional group since you currently are not, and start participating! 
  • If logging in a food diary keeps you healthier and more sane, do it. Don’t worry that you’re being too strict, too anal, too anything. If it’s helping, do it.
  • That goes for anything. If it’s helping, do it.

This is getting lengthy. Happy New Year, friends. Here’s to your health, in the hundred different ways we use the word. Here’s to knowing what you want and taking it at your own pace, not someone else’s. Here’s to stumbling, starting, trying, struggling, failing, trying again, trying again, & trying again.

big ankle keeps on turning…

I remember when I seriously thought I wouldn’t let myself go a month without posting. Okay. Does it make it any better if I promise there hasn’t been much to mention? I’ve only had two visits to urgent care this month – woohoo! Other than that I’ve been either at work or at home, asleep. Or at the gym. I keep remembering how fit I was this time last year (for the pageant #tbt) and it occurred to me that I could actually pursue being in shape without the pressure of having to walk onstage in a bikini.

Alright, health. The first urgent care trip was right at the start of the month. Remember that ankle injury I keep casually mentioning? Well, I attempted a night out in the city without wearing my ankle brace and turned my ankle YET AGAIN. This particular turn was so glorious, so passionate, that it immediately swelled to twice its size and was impossible to walk on. The friend I went out with shipped me to my boyfriend’s workplace (I may have been running to McDonalds at 1am when it happened), and he shipped me home. The two of us went to urgent care the next day, where I was put in an air cast and told that I need to see an orthopedist because I probably/definitely have nerve damage. Well, joke’s on you because my insurance doesn’t cover specialists within a 2.5 hour radius of where I live! I’ll just wear my ankle sleeve forever.

We may or may not have gone for pints directly after that doctor’s visit.

The second visit was this past Monday. I worked all evening on Sunday with no problems, but when I arrived at the restaurant where Sean (he does have a name) and I were supposed to get drinks and have a mini-holiday celebration with some of his crew, I was hit out of the blue with extreme fatigue and dizziness. I’m somewhat permanently a little bit lightheaded since my blood pressure is irregular, but this was different. This reminded me of the stroke incident back in February. I wasn’t panicked – I just decided that I wouldn’t drink anything besides water while we were out.

About three small glasses of water into the night, the nausea kicked in. I went outside for some fresh air and over the course of the five minutes I was out there, it became harder and harder to stand on my own. My entire left side was weak and I was having a bizarre amount of difficulty speaking coherently. Still, no panic. We went back inside and I forced myself to eat a small, inoffensive piece of potato to see if some food would bring me back to Earth.

Thaaat was all it took for me to run back outside and projectile vomit all over everything. It was likely the most nonchalant vomiting session of all time, as the few scattered people outside genuinely did not notice. One of Sean’s friends, who knew I wasn’t feeling well but didn’t know the details, came out to say goodbye as we obviously had to leave at this point. He went in for a hug…and I had to reject it. Mind you, this is someone I had only met once before, and only very briefly. Just “ahh, no, nope, don’t touch me, sorry.” Amazing.

We sat up for a while at home working on some crackers and water while I clung to a hot water bottle, and headed to urgent care the next morning. The rundown of that appointment was that I don’t have the flu and I’m not pregnant, so…I’m good. Thanks? However, Sean did get himself checked out while I was there, which I’ve been asking him to do for a long time. He also does not have the flu, nor is he with child.

…we went for a pint again after that visit, as well. This is becoming a strange and delightful routine.

~

On another note, my rheumatologist let me know that my lab results from November were normal, except for a serious vitamin D deficiency. It’s a relief to officially rule out some of the potentials that have been hanging over all of this for years, like lupus. I’m plowing on by reopening the kidney investigation next month with a nephrologist my dad trusts and likes a lot, so I’m excited to see what he makes of everything. I do have a new idea of what could be going on with ol’ left kidney, based on my own research. I’m not ready to talk about that here, now, but I will absolutely bring it up with the nephrologist in January.

Y’know, I had this hope that I’d dive right into a new job in January, but I have these two separate, important appointments back home that will require a lot of traveling. Unless I just stay home. Truthfully, I’d love to do that. My Christmas present to my dad is manual labor in & around my mom’s old house – whatever needs taking care of. This will probably include taming the backyard, scrubbing the floors and walls, and boxing up old things. Let me tell ya, that house hasn’t been deeply cleaned top to bottom in a long, long time. Maybe it’s worth sacrificing a month of job progress to be home, battling dirt and nicotine stains, feral cats and wild shrubbery. I can still research and apply for jobs as long as I have my laptop, so there’s that. Plus I’ll have my piano handy. I’ll have friends and family (and doctors!) nearby.

Hmm. I think we have a January plan. Now let’s see if I get my life together enough to write again before December ends. Every year I make a list similar to a list of resolutions, but it’s more about things I want to accomplish rather than things I want to give up or tweak about myself. Granted, some of those things are always included, but I just can’t bring myself to think of it as my “2019 resolutions.” Why am I like this? Still, I think that will be the next post. Wow, a plan!

🙂

brave elvis

I don’t like writing under pressure. The “pressure” right now is only coming from me, because it’s been ten days since I last posted and I’m afraid that I’m just going to keep getting busier with work as Christmas storms closer. Still, self-induced pressure counts, and the result is that I’ve been sitting here staring at a blank computer screen for a decent amount of time. 

I guess I could just dive right in: I had my rheumatologist appointment last week. It was drastically better than the appointment I had last year, and I’m truly loving this doctor already. It was instantly apparent that she really sees things, and that she’s interested in potential connections that other doctors have written off as unrelated. Right off the bat, she took my 500,000 pages of medical records that I brought in a beat-up plastic bag from Burlington Coat Factory and made copies of everything. She went through my past lab results and scans, and pointed out an abnormal reading regarding my kidney from images done on my spine that no one had thought to mention before. She’s pushing me to go back to a urologist for that. Also, I have mild scoliosis. This makes so much sense, I’m pretty sure that I responded with “ohhh. yep. okay.” I was told by a chiropractor back in January that one of my legs is shorter than the other, and a masseuse told me that same month that the back of my ribcage (on my left side) protrudes further out from my back than the right side. I’m just out here confusing people left and right with my funky skeleton.

After she had finished absorbing the last five years of my life, my new rheumatologist ordered a massive panel of blood work. I know some autoimmune disease-related tests were in there, although I’m not sure what specifically or what else. I’m waiting to hear back about all that hootenanny sometime this week, I say with great optimism. In the meantime, life goes on. I’m making a goal of getting back into the gym on a regular basis, even though it’s going to involve a lot of night workouts. This is the fun of having a gym AND workplace over an hour away from where you live – if you want to exercise before work, your choices are to either bring all of your makeup/shower stuff in your work bag which is 1) heavy and 2) requires planning, gross…or skip all of that and look like a sweaty, ragged animal all day at work.

It’s a little bit funny…any time I’m waiting on test results like this, I’m bracing myself for two different versions of the worst. There’s the dramatic version where they find something, and it’s a serious something and my life is never the same. Then there’s the version where everything comes back normal, and I still don’t know how to move forward with this mission to fix myself. The opposing, more positive outlook is that either I’ll be lucky to not have any serious problems, or I’ll be lucky to have finally caught the issue so that I can start treating it. Maybe this makes absolutely no sense, but I prefer to think about outcomes that make me angry now, because then it’s out of my system. I desperately want to avoid getting emotional in front of doctors for the hundredth time. However, I can only really plan out my next steps if the results are all negative and it’s decided by the rheumatologist that this will have to be someone else’s mystery. This is because I have no idea what the other possible outcomes are. My kidney is to blame for everything and I need to have another surgery? This nonchalant scoliosis situation is actually my big problem and I have to go to physical therapy? Everything really was in my head this entire time? I can only speculate so many ideas. 

You know what? I am happy, I am lucky, and I am doing okay. That’s the mantra. 


frustration tears

I promised myself I would keep up with this writing – no three month breaks or anything like that, which is a habit of mine that I’m quite aware of. I’ve had time to write the past few days, but I was waiting until I felt that I had to talk about a particular subject. Now I’m thinking that this might be the right time to talk about something I hate talking about. How do I go about this? Ugh. Okay. If this were an essay, it would be called…

“The Shame and Embarrassment of Anxiety and Depression: How Mental Disorders Hinder You from Finding a Proper Diagnosis for a Variety of Other Issues You May Have.”

Whew! I miss writing essays, actually.

I want to start by saying how much I appreciate my primary care doctor. I’ve never been afraid to reach out to him about this new symptom or that, never felt judged by him, and I know that he understands my concerns and wants to find an answer as badly as I do.

However…once upon a time, very early on, he suggested anxiety was a factor in my pain and fatigue. I had no reason to oppose this suggestion, so I started taking a daily anti-anxiety/anti-depressant. I took that pill every day for somewhere around four or five months and then wanted to stop, for two reasons:

  1. It wasn’t helping my physical symptoms.
  2. It was ruining my social life.

I included the second reason to keep it real, here. My priorities at the time were…not the best. I was trying to maintain what had become my normal routine this particular year of college, which included going out a couple nights a week, but found that the medication and alcohol really did not mix. I would go from feeling fine to feeling like I had taken 12 shots in about five seconds. I lost my ability to gauge how I was holding up on a night out, and it was all sorts of disastrous. If the pills had solved the issues they were meant to solve, I don’t doubt that I would’ve been happy to give up my silly/destructive college nights out. However, they weren’t helping, so I quit the meds cold turkey.

For three months, I was an absolute monster. I was rude to my roommate, my friends, and my then-boyfriend for no reason at all. I gained weight, my acne went wild, my legs itched nonstop and my mood was all over the place. I was struggling, and I loathed myself. I would take the pills here and there to try to get my normal self back, but every time I’d try to stop again, the same thing would happen. I did eventually rid my system of the pills altogether, but I don’t think I was really myself again until that summer.

Fast forward to last year, September or October 2017. At this point, I’m a year and a few months out of the kidney surgery that my urologist hoped might solve all of my problems. It did not. I somehow have more problems. Aside from developing fun, new symptoms, I’ve also spent the last two years coming to understand how to manage the anxiety that, as it turns out, really is a part of me. I’ve read a fair amount of fantastic self-help articles and even started opening up to a few close friends about everything. This time last year, I remember being excited to see a rheumatologist for the first time in a long time, and full of hope that she would recognize the connections between every strange thing my body does. You see, doctors are often telling me they haven’t found anything as if it’s good news. When you know something is there, you want them to diagnose you! Only when you acknowledge the problem can you address it the way it needs to be addressed, and I just want to know how to be good to myself.

I waltzed into the rheumatologist’s office very, very prepared. I’m the nerdiest patient she’s ever seen. I have lists, I have dates, I have everything she might possibly need. And it went something like this:

Doctor: (after looking through all of my paperwork and listening to my account of the past four years) “You were on Lexapro?”

Me: “…yes.”

D: “Why did you stop taking it?”

M: “It wasn’t helping.”

D: (long pause) “I’m not going to do the [blah blah] test. (This was a blood test that would check for certain immune system issues.) It’s expensive and I don’t see a real need to do it.”

M: “…okay.”

D: “Sometimes…(she inches closer to me to really drive this point home)…we do something and fix the problem, like how you had the surgery, but we still think the problem is there. We still think we feel the pain. But really, the problem is fixed.”

M: …

D: “I’m going to prescribe [well-known anti-depressant/anti-anxiety pill that I do not want to name because I’m sure it has helped loads of people but boy oh boy did it not help me]. We’ll see if that doesn’t take care of it.”

And then I openly cried in this woman’s office, out of sheer frustration. She didn’t understand that part, either.

I took the pills, by the way. I started them a week or so after the appointment because I felt that I had no right to tell a doctor that this was a bad idea without at least trying first. I was on the pills for about six weeks when I fell into the longest and darkest depressive state I’ve ever been in. After stopping the meds, it at least took another six weeks to climb back out. That was a terrifying time, to put it briefly.

I have another rheumatologist appointment coming up in a month. This time, I’ve already had the blood work done for that same test the doctor didn’t want to give me last year…and the results did come back indicating what I thought they would. (Where’s my honorary med school degree, honestly?) Maybe this time it will be different. I don’t know. I get nervous just thinking about sitting in front of another new doctor and trying to recap so much information without seeming completely crazy. All I can do is put the most sane version of myself forward, come with the facts, and hope for the best.