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!

🙂