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.

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!