well, this post is happening.

Happy one month until autumn! Here’s hoping I lock down a steady job soon so I can afford rent insurance my student loans an unnecessary amount of sweaters!

I’ve been reluctant to talk about what has become a major part of my quest for pain relief because I’ve been worried about crossing the line between honest, personal writing into TMI territory. I worry about making my many, many readers uncomfortable. The sacrifice is…I’m not making any progress, and I’m not initiating any conversations that might help someone else make progress. No one benefits.

With this in mind, today I’m going to do the uncomfortable thing and finally talk about…birth control! Annnd…PERIODS! Did I just lose all the men?

There’s a question I love to get when I’m having myself a good ol’ ER visit for my mystery flank pain or any other symptoms. “When was your last period?”

I admitted to a male ER doctor on one somewhat recent visit that it was currently happening, and that right there ended our conversation. He told me that some women experience much more severe cramping than others, even in unexpected areas of the body. The only reason I had gone to the ER at all was that I was experiencing similar symptoms to the stroke-code day, and had been told that I should absolutely go to the ER if those symptoms ever came back.

Some background info for ya: I switched from a hormonal birth control pill to a copper (non-hormonal) IUD a little over a year ago, hoping that my anxiety and depression would calm down. I had a feeling the two were related. Luckily, they did get much better after the switch. Things aren’t perfect, but mentally I feel a thousand times better than before.

With this swap came a sacrifice. I never had a difficult period while on the pill, but things took a 180 with the IUD. I expected everything to level out after a few months, but this did not happen. Now I have a few days a month where I can’t really leave the house. For the most part, I think it’s worth it to feel like myself again.

I’ve kept a log of my pain and symptoms for years (without much consistency), but only at the start of 2019 did I start tracking those symptoms in correlation with that time of the month. I don’t know how surprised I should be, but there is a bit of a pattern. My left side pain, lightheadedness, fatigue, and even UTI symptoms that have been present for years and years tend to act up during and before the uterus party kicks off. To note: I experience instances of left sided flank pain (typically right along the bottom of my ribcage) at random points in the month, too. But…my symptoms also consistently get worse at the same time each month.

What does it mean?

I don’t know. I tried to talk to my OBGYN about it at my last appointment, which I believe I wrote about in minimal detail. Specifically, I wanted to learn about ureteral endometriosis from an expert and not just the internet. As it turned out, I don’t believe my OBGYN knew much about ureteral endometriosis at all. He insisted on performing an “examination” and told me that because the area wasn’t tender to the touch, I probably didn’t have it. I tried so, so politely to ask if my ureter would be the tender area rather than where he had examined, reminding him that I wasn’t talking about your usual endometriosis, and his response was more or less a hesitant “nah”. Anyway, that was about my 10th bad experience at that office so I’m pretty done with them.

You know what’s crazy though?

Just in my very light research that I’ve done on possible conditions that are related to the menstrual cycle and/or all of those crazy organs down there, I’ve come across SO MANY conditions that I’ve never heard of.

SO. MANY. Not that they all have anything to do with my symptoms, but oh my gosh there are so many different potential problems that women can experience.

Thoratic endometriosis? Interstitial cystitis? Mittelschmerz?

Also, the amount of women/menstruators asking each other questions via online forums is equally great to see, and terrifying. How did we become so reliant on turning to each other for answers when we’re all meant to see doctors who are trained specifically in these areas? I know full well that there are tons of incredible and dedicated OBGYNs out there, but at the same time…the situation proves that we’re a long way from where we need to be.

Health education is a big part of this, as well. I remember the first time I was diagnosed with a UTI, before we knew it was a chronic/mimicry situation, and thinking “why did I not learn in health class that girls should use the bathroom after sex?” Seems like some basic preventative information, no? Simple things! Not to mention, I didn’t even know there was such thing as a non-hormonal IUD. The way I felt all of those years could’ve been avoided. Who knows what a difference that might’ve made?

I know I’m one of those people. I talk a lot and get fired up about things, but I haven’t done much to enact any change. I knew when I made this blog public that I was far from having my goals figured out. Y’know, big picture goals. Still, as I say all the damn time, we all have to start somewhere. In the meantime, I have a collection of posts where I rant about things for me to look back on when I feel like I don’t know what I’m doing…so there’s that.

I’m going to lay on the floor now with ice on my ribs and continue to try to control my hormonal acne with a very uncomfortable bee venom serum. Yes, it stings. Yes, like a bee sting.

I’m leaving you with a recommendation of someone to pay attention to: Nadya Okamoto

Okamoto is a Harvard college student who founded PERIOD, the menstrual movement – “a global, youth-powered non-profit that is fighting to end period poverty and period stigma.” (I took that directly from her organization’s Instagram, @periodmovement.) I love what she’s doing. If you’re a college student, you can start or be a part of a PERIOD chapter on your campus. I’m still working on figuring out what I can do for her cause as a non-college student with no money – but I’m sure there’s something. Oh, Okamoto also wrote and published a book. Pfft. No big deal. Bet she doesn’t know how to mime.

Alright, it’s floor time.

(…watch out for Séan’s foot)

reminiscing in towel pants

This time last year I was strolling around London, pretend-shopping in Covent Garden and wandering back and forth across Tower Bridge. I’d visited London once before this when I was 18, a mere freshman in college, and had never before travelled alone. This time was different – I was 24, had a little money in the bank, and knew how to curate a perfect day of sightseeing and coffee stops.

I was only able to take this trip because June 15th of last year was my last day of work at the job I truly thought was going to be my “finally!” job.

I started working at my first sit-at-a-desk-for-9-hours job in February of last year, after a looong break in employment (the Christmas market had ended in December) that had me craving stability and routine. This particular position involved handling client schedules, coordinating freelance artists, and most importantly – handling client complaints. I know that this is an inaccurate percentage, but it really felt like 95% of the day revolved around resolving complaints. I enjoyed the sense of purpose I found in helping people and troubleshooting their issues, taking angry and often accusatory phone calls from negative to positive.

Still. I would leave the house at 4:50am to get to work by 7, and despite getting out at the nice early time of 4pm, I was so rattled and tense after work that I’d go to the gym (plus I felt the need to use my legs after all that desk-sitting) until 6 and end up home around 8pm – enough time to make a quick dinner and shower before going to bed.

It was a routine. And the job helped me develop some critical skills. Plus, I met some of the best ladies there, whom I still like to see whenever I can. It just wasn’t a routine that worked for me.

I’ll admit that at first, it was worth it. It was so nice to finally have money – and health insurance! But no matter how happy I think I am, if my “stable” life leads to an unstable mind, that is the most important red flag that I have to listen to. I had hours that changed on a week-to-week basis, but it wasn’t enough flexibility that I could go out for an acting gig here and there like I had wanted to. I was finally able to afford the tons of specialist appointments I needed at the time, but didn’t have a schedule that allowed me to get to those appointments. Remember the stroke story? All of that happened about a month into this job. I didn’t find time to follow up with the neurologist until at least a month later (…it was supposed to happen right away. They were not pleased with me).

After a quick five months, I said “I’m off to do other things” and went to London. I drank a lot of (mostly free) coffee and stared at beautiful buildings. I bought my mom a royal baby-themed dish towel. I took a trip to Oxford and laid on a bench in a shopping mall while my kidney had a meltdown. (Worth it. Gorgeous weather.)

I meant to get my life together again when I got back to NY. I started working a combination of super part-time and seasonal jobs. I started applying for acting gigs again (I did a lovely little 3-night show in September). Then came the trip to Scotland, which was the greatest head-clearing break I could have ever hoped for. Over the course of the fall and winter, I scrimped and saved and had to be bailed out more than a few times. I got sick and got better and got sick again. I boldly tried living on background acting alone, for a bit. Then I dipped a toe back into waitressing and absolutely lost my mind.

And here we are.

You know how people say “did you ever think a year ago that you’d be where you are right now?”

Honestly? Still a little bit broke? I could’ve predicted that.

BUT. I think saorza circa June 2018 would never have guessed the following:

  • I had my first speaking, solo role (as myself!) for a well-known company’s promotional shoot yesterday. You might actually see my face places come July.
  • I’m mostly through with the application process for my master’s – finally! And also, again! I’ve applied for 4 master’s programs over the years (acting, tourism/preservation, counseling, and now, nutrition) but this one feels the most right. It isn’t a new idea – just an idea that has simmered a long time, finally ready to be put into action.
  • This blog! It’s alive! This sweet, frighteningly public journal which I so carelessly abandoned for about a month (due to working ALL OF THE WAITRESSING SHIFTS and spending all my non-waitressing time meditating on how to get through work without strangling anyone) is connecting me with fantastic people, and looks pretty freaking decent if you ask me.
  • I moved in with a human ThunderShirt. Or, like…a human lavender candle. It’s absurd how this guy manages to calm me down. He doesn’t think that he does it very well but hey, you! (He reads this sometimes.) You do.
  • I have made peace with not going after every. single. dream. At least, not right now. A little more focus and direction is much needed in my life and I’m finally cool with taking some things off the table to give more of my attention to those which I want to prioritize.

Also – I have a great to-do list on my fridge that keeps me going, which reads as follows:

  1. JOB
  2. GYM MEMBERSHIP
  3. HAIRCUT
  4. CREDIT CARD
  5. FIND A LADY OBGYN

Number 5 isn’t on the fridge, actually, because I like how the first four look all on their own. But it’s there in spirit. I have a strong gut feeling that #5 will be a key move in nailing this wacky pain situation. Also, perhaps I should say hi to my primary care doctor sometime soon. The poor man hasn’t seen me in…a year and half? Possibly more? Oh dear.

Things were just restarting this time last year. And so they shall restart again. You have to look back sometimes to see the progress. Yes, I’m drinking cold coffee and wearing a beach towel for pants, and so might you be. It doesn’t mean we aren’t determined badasses out here doing what we have to do.

And what I have to do right now is continue my job hunt, which just to note, started in 2016.

I’ll be back SOON. Promise.

and this is why I don’t own blush

Oh hey. The thing is, I told myself if I started waiting tables again I’d schedule writing into my life in a structured way so that I don’t end up not writing for long chunks of time.

And then I didn’t do that, and here we are.

I was actually starting up a bit of an anxiety storm in myself over sleeping in today and not getting up early to write this post. However, I didn’t sleep well, I worked a busy night last night, I’m recovering from being sick, and I have work tonight. So I’m going to back off myself on this one.

Firstly, is anyone creeping on the saorza Instagram? I’m still slightly peeved that I can’t just be saorza thanks to that existing account, but that’s just me holding on to something I have no control over whatsoever. I was steadily posting on Instagram until I really started working, and then I fell off that horse, as well. But I’m going to do better.

I’m also going to get back on theme again, today! I keep veering off into mental health and anxiety/stress, etc. but I had a couple of kidney-related follows on the Insta and realized…maybe I should keep talking about the main issue at hand, here.

I’ve been relatively pain-free lately. I’m very, very, very grateful. After an ab workout Monday I was a bit tender in the left side, and I did have my UTI-like symptoms hit me hard about a week ago. However, there are some symptoms that haven’t acted up in a while, which is awesome.

My fatigue issues have been pretty chill. I think this is partially due to sleeping a bit later than I ever did before on a regular basis, thanks to a job that lets me do that.

My left arm hasn’t flared up in a while. That’s usually the sign that I’m about to be in pain up and down the left side of my body, but sometimes I’ll only feel weak and achey in the arm – which used to happen more frequently.

I also haven’t noticed a face rash in a bit. I am about to show you some VERY unflattering pictures from over the years of the recurring rash that led my doctor to believe that lupus could be a factor. I did have an elevated ANA last time I had a detailed blood panel, but the rheumatologist I last saw (and really like!) does not believe it’s lupus, and I trust her. BUT for the sake of sharing my weird ailments with you, here are some niiiiice pics.

These gorgeous pictures above were both taken in my college days…roughly around the spring of 2015. I know this because of what I’m wearing and also my horrifying eyebrows. I actually feel a little bad about subjecting you to these. BUT. What was up with that rash?! These were two different days, and the rash had been coming on and off for months before I started trying to record it. I wasn’t using any experimental skin care products or anything like that, and I never wear foundation. If anything, the rash would appear when the left side pain came out to play, or sometimes when I switched rooms with drastically different light or heat.

These two examples are from 2017. Again, so attractive. The one on the left captures the strange blank spot on my right cheek that the rash seemed to scoot around. Similar to the one on the right, where I had a yellowish mark in the middle of my left cheek. I remember that the picture on the right was after I stood up from laying on the floor, and the one on the left was after a shower. I wish you could see that I’m in a towel, not just hanging out naked. Not that there’s anything wrong with that.

I haven’t had such an intense-looking rash in a while, but I still get the red splash across my face from time to time, usually when I’m not feeling well. I never got any answers about why. Does anyone have any insight? Does this look familiar, or do the conditions sound like anything you’ve gone through? I’m curious and eager to find someone who might recognize what’s going on here! If it never comes back, all the better…but it’s been off and on for around 5 years so I’m anticipating she’ll be back the next time pain comes knocking.

In the meantime, I hope everyone is well and taking care of themselves this rainy May. I share lots of self-care related art and lists and whatnot on my Instagram, so if you feel that you’re lacking any of that, come visit me over there. 🙂 (@saorzanyc)

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?

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.”