Today (Sunday, 3/11) marks five weeks out from my stroke (2/4). I have been trying to keep up with the overwhelming support and outreach that I’ve been receiving — for which I am super, super grateful and eternally humbled — but I thought I’d take some time to write a post about what’s been going on in the past month-plus and how I’ve been faring.

I talked about it a lot in detail in my actual post about the stroke, but the support and love I’ve been getting from friends, family, and online has been huge. It makes a big difference, and I consider myself so lucky to know that I can call on a lot of people to help me out, to listen to me, or to… whatever, really. I’m really, really grateful.

Truth be told, I feel like I’ve been a bit of a shitty friend for the past month-plus because so many people have been checking in on me, and asking about me, and trying to figure out what they can do for me, and I haven’t reciprocated as much as I would normally. It makes me feel selfish, admittedly, but I also recognize that I’m still in a bit of survival or self-preservation mode. I promise you I’m not being a total ass right now; I’m just trying to get my head on straight, which is easier said than done some days. I haven’t forgotten about you; it’s just taking me longer to circle back.

February was the longest and shortest month of my life. Following the stroke on 2/4, hospital admittance on the 5th, and then discharge on the 9th, it seems that life has been moving at both a glacial and racecar pace. It’s sort of like that shitty saying about raising kids, that the days are long but the years are short; you have to experience it for yourself before you can really wrap your head around it (though I sincerely hope you never have to deal with a stroke). My sister left the day after I got discharged; my in-laws left about a week later; and when they left, my parents came in and were here for another week (putting me at about two weeks post-stroke), when A was on ski week break. After my parents left, my eldest went back to school for about a week and change before switching into a conference mode schedule (read: shortened days for about 10 days), and that puts us to right about where we currently are.

In the mix of everything, of course life continued moving forward, as it well should: we still had bills to pay, weird ass insurance stuff to figure out (can I have that hour of my life back that I spent on the phone earlier this week? Oh, and the preliminary hospital bill, which excludes a LOT, is a sweet ~$280k), PTA stuff to do, Girl Scouts obligations to lead, a family life to maintain, yadda yadda yadda. You get the picture.

Being out of the hospital and beginning to “do life” was really important to me, even with the modifications that I had to make for the first four weeks (ie not running, not lifting, or not picking up my kids). Sure, I have felt like I’ve been talking about myself a whole awful lot, with people asking me every day how I’m doing or how things are going, but otherwise, I’m happily inching toward normalcy.

March 2

March 2 was my first day of counseling. I’ve never done any type of counseling before, nor have I ever taken any prescriptions for anything related to mental health, but when my Stanford case manager suggested that I consider either (or both) to help with what was likely PTSD from the traumatic nature of the stroke, I welcomed it. A neighbor friend watched G, and I went to my appointment, only cried a little bit (likely the only time I cried the whole week, remarkably), and felt pretty good about it and agreed to future sessions. I mean, it couldn’t hurt anything, I had childcare covered, and insurance was pretty generous with it; why not?

March 3

The counseling appointment on 3/2 was especially timely because my repeat MRI scan was the next day, on Saturday, 3/3. As I understood it from my neurologist, though he was 99% certain that this scan would come back clean — his words — it was essentially a way to cross Ts and dot Is and ensure that they didn’t miss anything in the earlier scans, like something vascular or some congenital thing that could have contributed to my stroke or to possible future ones. I felt pretty good going into the MRI, no doubt thanks to taking Ativan before I got there to combat the anxiety and claustrophobia that kicks in when I’m strapped down on my back and delicately pushed into what’s basically a big-ass vault that sounds like a jet. My hopes for a still body and a quiet mind came true that morning, thankfully, and I have to say that my MRI tech, a sweet man with a cute Dallas accent, helped take the edge off by telling me repeatedly on the intercom “this test will take 45 seconds,” “this test will take 4 ½ minutes,” “this one will take 30 seconds,” “here comes the contrast,” and the like. Bless that man’s soul.

 

March 4

Really, that entire weekend, from Friday to Sunday, was bookended with important-to-me events. Following my first counseling session on Friday, then the MRI on Saturday, I spent my Sunday morning volunteering over in the Rose Garden neighborhood of SJ with my Wolfpack teammates for Represent Running’s 408k race, my fav race in SJ and one of my fav distances. Volunteering at a race exactly one month after my stroke was sort of, I’m not quite sure, I guess the right thing to do. It felt right to be there — good to be there, actually — and honestly, it made my heart sing a bit. In general, I derive a lot of joy from races — whether I’m racing them or on the sidelines — and I didn’t experience any jealousy or “why me/I want to be out there/why can’t I be out there” sentiments; it just wasn’t my year and by no fault of my own. Shit happens. Two years ago I couldn’t race it because I had strep throat. Last year, I couldn’t race it because I had the flu. This year, I couldn’t race it because I was recovering from a stroke. (Weird, right???!) It’ll be there next year, and so will I. It was really awesome to see so many teammates, both those racing and those volunteering, as well as any friends from the running community that morning. Shit, friends even detoured mid-race to come over to specifically ask me how I was feeling and to share a sweaty hug with me. That’s love, man. That shit’s palpable.

 

 

Capping off the weekend on Sunday afternoon was a good two-hour long phone call with a gaggle of my closest girlfriends from undergrad, all of whom had taken a weekend trip to visit Omaha, where one of them is currently living. I don’t remember the last time I was on an actual phone call for longer than twenty minutes, but let me tell you, it was awesome. It was good for my soul, and it was awesome to catch-up with everyone basically in one fell swoop, a rarity since we’re spread out geographically otherwise. It was lovely.

When I rounded the one month milestone on Sunday, I felt well. Physically, I have been feeling great almost from the get-go, and the mental side, while seemingly mercurial on any given day, by and large was improving a lot. Of late, I’ve been having more good days than bad, and every day that I’m doing more of the same, the minutiae that I do on any given day for any of my many obligations, makes me feel like I’m approaching “normal” again.

The farther out I got from my trauma date, the better I was feeling, basically: as is often the case for a lot of us, whether we’re grieving, working through a trauma, or whatever. “Time heals all wounds” is a cliche for a reason, right?

And then Tuesday rolled up.

March 6

Fortunately, I was able to get in to a new GI Tuesday morning, moving my appointment earlier by a good month-plus, due to someone cancelling. As I was sitting in the office filling out the requisite new patient paperwork, while hoping my slowly-going-apeshit two year-old wasn’t going to knock over an expensive-looking vase or something (what the hell? In a doctor’s office???!), for the first time in my life, I had to pause when I got to the “stroke” section of the intake form. For the past twelve years, I’ve always breezed through this section, writing “mother – 2006” and going on to the next to detail whatever other malady my family has had.

This time, of course, I saw “stroke” and thought fuck and sighed. I checked “self,” writing “subarachnoid hemorrhage, 2/4/18,” for the first time in my life, sorta having a moment to myself in the process (again, while casually watching my two year-old be a professional two year-old and slowly but surely destroy the waiting room). This is the new normal.

I can’t pretend this didn’t happen to me.

This is (part of) my story now.

Fuuuuuuuuuck.

In bizarre timing, as I was filling out that paperwork and mulling over the shittiness of always having to check “stroke: self” on all medical forms for the rest of my life, I got an email from Stanford indicating that my test results were in. WHOA! My test results are in?! I was completely surprised because I wasn’t expecting to see my results so quickly, and my understanding was that the process would be as follows: I have the MRI -> my doctor gets the results -> he interprets the results -> the office calls me and tells me the results, next steps, that sort of thing -> hopefully, we can wash our hands of all of this, chalk it up to a shitty circumstance, and then I can go on and live my life, pick up my kids, run my heart out, whatever.

Instead, the process became I get the MRI -> two days later, I get my results, and without anyone qualified to interpret them for me before I look at them. Perhaps you’re sensing what could have possibly gone wrong with this new process?  

As I was sitting in my GI’s waiting room, I decided to quickly read through the test findings, under the assumption that everything should come back clean, that my doctors were doing this follow-up MRI more as a matter of course or policy. The summative findings were what I wanted to read: that everything looked age appropriate, that they didn’t find any aneurysms or other potential bleed sources, and that the findings, in total, were unremarkable. Unremarkable! Not even mediocre! For once in my life, I am boring — no, unremarkable! Sweet!! I continued to scroll through the rest of the test results, not understanding anything I was reading (since I’m not a neuro, nor do I pretend to be one), and I immediately went into a mental tailspin when I read elsewhere on the report something about a 5mm cyst with a Proper Name. I have a 5mm cyst?! How was this not talked about in any of the million other previous tests I’ve had in the last month?! How can the summative findings be unremarkable and seemingly great, but I have a cyst in my brain?!? DOES NOT COMPUTE DOES NOT COMPUTE DOES NOT COMPUTE.

Meanwhile, of course, I had a visit with my new GI, and before he even introduced himself, as he was looking at my intake form (on top of the 45 pages of notes I had brought with me from my previous GI), he shook his head incredulously, looked at me, looked at his notes, and looked at me again before saying, in the most obviously bewildered and bothered tone, “You had a stroke?? Why did you have a stroke?”

On the heels of just filling out that intake paperwork, where I checked “stroke: self” for the first time, and minutes earlier, reading what seemed to be conflicting information about my brain’s health, it took my everything to refrain from throwing my hands in the air and yelling FUCK IF I KNOW! NO ONE KNOWS! NO ONE KNOWS WHY I HAD A STROKE! NO ONE CAN TELL ME WHY THIS HAPPENED TO ME!

I got through the rest of my visit with him, putting a plan in place to get my shitty problems (bad pun, I’ll be here all night) under control, though of course, he made it a point to say that he wasn’t going to touch me until everything with my head got cleared up (and that, in the meantime, when I’m symptomatic with colitis, I should take Pepto or Immodium and hope for the best. Fabulous).

After I exited his office, I called my neuro’s office, asking when someone was going to call me to talk about my potentially-problematic test results, and because I was quickly becoming that patient, I also emailed the office, specifically the neuro NP I had seen, asking the same. The office called back about an hour later, saying that once my doctor reviewed my results, the office would call me — likely at the end of the following week. This means that I’m currently basically burdened by this knowledge of my test results, which I don’t understand, and the singular person who has to interpret it and recommend the next steps isn’t going to look at it (or get back to me) for about 10 days. Cool.

A little while later, the NP emailed me back and indicated the same, though without putting a timeline on when the doctor would review it, and nearly as an aside, she indicated that that cyst finding was likely incidental, and not problematic at all, and that if the doctor were worried about it, he’d let me know. Again: cool.

These lovely events in a couple hour timeframe fueled what was another couple hours’ worth of what I could probably describe as a good, ol’fashioned shitshow of the anxiety or panic attack variety, a la Jessie Spano. Seriously, I should pull the footage from our security cams and submit it to the Academy because I felt completely out of control and disempowered: with this situation, with doing life post-stroke, with being an attentive and good mother to my kids (particularly with the 2 year-old who was happily running laps and tearing up shit upstairs, when she so desperately needed to be napping), and so on and so forth.

I could do nothing — nothing about the news from the report, which I didn’t understand; nothing about having a stroke; nothing about preventing my stroke from happening; and no one could tell me anything, at least for an otherwise unspecified amount of time. I was spiraling downward, and fast.

I left a long-winded video update to my college friends, apprising them of the news, and once I eventually connected with my husband, I was crying so hard, on the verge of hyperventilating, that it wasn’t until later that night that my husband told me that for the first time since we’ve been together (going on a cool 16 years), he could barely understand me. I considered taking the Ativan (at his suggestion) because really, this type of situation is what it’s for, but I didn’t want to because I’d be needing to drive in an hour’s time and I didn’t want to take the risk of the sedating side effects. Instead, I just waited to come down from the precipice.

Fortunately, as Tuesday wore on, I calmed down. My sister, my physician friend, my parents, and others all reminded me that if my results really were problematic, my neuro wouldn’t be sitting on them for over a week; if it mattered that much to them, my ass would be in their office pronto. It’s shitty that I found out my results in this manner, but for now, it wasn’t worth dwelling on because — again — if this potential cyst were remotely or gravely important, we’d already be dealing with it. More likely than not, it was just an incidental finding, something that the technology captured and that the radiologist had to report because he/she didn’t want to get sued.

More likely than not, it probably didn’t matter, and I was as my doctors suspected: fine.

Waiting sucks, sure, but if waiting for a result means that said result is low on the importance/significance scale, then I could wait. Of course I didn’t want to wait, and I don’t want to wait, but I can wait. 

March 7

And then Wednesday happened. 

Ah, sweet, sweet Wednesday.

When I was videochatting with my MIL, apprising her of everything that happened on Tuesday (with the results coming in, the shitshow that was me, the maniac that was my two year old [again, being a two year old] and everything else), she asked me but have you gone for a run yet? She caught me off guard because why would I have gone for a run by then? I had my test results back, sure, but no one had interpreted them yet for me. My understanding was just the same process that I talked about earlier: I take the MRI, doctors see results, doctors interpret results, they call me and tell me to do my life as normal, including running. Since a doctor hadn’t yet interpreted my results, I didn’t want to jump to any conclusions.

But you’re past the four week mark; it’s been over a month since your stroke.

They said you can’t lift the kids, pick up anything heavy, or run for four weeks.

Four weeks was Sunday.

You should be able to go do that now, and you know it’s going to make you feel *so* much better.

Call or message the office, and just ask.

Otherwise, you may be needlessly waiting around for another two weeks, my MIL all but implored.

And sure enough, she was right. The NP cleared me to run, pick up my kids, and the like again (while taking it easy, of course), and she said that ultimately, the final decision was up to the doctor, but from her interpretation of the MRI results, I was good to go. (She had also asked about my mental health and whether I had been taking the Ativan regularly, since I had mentioned in my message that Tuesday was pretty “rough”).

Four and a half weeks after having and surviving a stroke, I was cleared to run again, and let me assure you: I wasted no time.

As G finished eating her snack, I threw on some running clothes, and we were out no more than twenty minutes later. I didn’t have a plan — 5 minutes? 10? 15? 20? — and just relied on listening to my body. I surely looked ridiculous because I just kept thinking I’M RUNNING! I’M RUNNING! I HAD A STROKE A MONTH AGO, AND TODAY I’M RUNNING!! RUNNING!!

Suffice it to say that it was a rather quixotic 17 minutes and change over 2 miles while pushing G. It was in the 60s; the sun was shining; there were few clouds in the sky.

It was perfect.

 

But really: talk about a hell of a rollercoaster in 24 hours’ time.

Tuesday left me feeling like I was back at square one, feeling about as emotionally and mentally vulnerable and shitty as I was when I exited the ICU, and by Wednesday mid-morning, I felt like I was queen of the fucking world.

Rationally, I know that there will be both good days and bad days as I work through my recovery and trauma related to the stroke, but knowing that they’re coming or that they’re inevitable doesn’t do much for me to help mitigate their effects. The bad days still suck — and Tuesday was quite bad — and they leave me reeling, wondering how and if and when I’ll ever be able to get through the anxiety and reality that is surviving a stroke as a 34 year-old healthy individual.

The rest of my Wednesday continued to fill my cup — spending time with my family, hosting a Girl Scout meeting for my Daisies, and having another GS leadership meeting with a bunch of women I enjoy — so the day ended with me thinking ok. We can do this. I can do this. Not every day is going to be Tuesday.

March 8

Next in the week of never-ending appointments was a gynecological exam with a new-to-me practitioner, this time with both kiddos in tow. Thursday began pretty well with our usual obligations, and though I wouldn’t willingly bring both kids to a gyne visit, I missed my original appointment in February because I was in the ICU, so I didn’t have much of a choice when I went to reschedule. I was going to have some rather unwilling company.

The gyne exam itself wasn’t anything to write home about, but I spent a ton of time with the NP talking about birth control and strokes, since certain birth control options have been documented to increase the risk of blood clots (and thus, strokes). My particular form of birth control, Nexplanon, has that same type of warning information, but interestingly, my Regional docs and my Stanford doc dismissed it and said that it wasn’t a variable or a potential cause. If I had thrown a clot that led to my stroke, then maybe it would be a consideration, but since I had a bleed, it appears irrelevant.

Here’s the thing though, and my new reality: I can’t, or I won’t, just take medicine any more and assume that the side effects — especially the “rare but documented” ones — won’t apply to me. Sure, the Nexplanon increases your risk of clot-based strokes, but what if it also does the same for bleed-based strokes? Shit, what if the medicine I had been taking for my colitis last year, the one that fucked up my liver, also could have contributed to this? I’ve had enough instances in the near recent past with medicine that now makes me increasingly hesitant to take anything. (A quick jog down memory lane: two different surgeries related to two different IUDs: a hysteroscopy to retrieve #1, that had fiercely lodged itself into my uterine wall, and another retrieval for #2 that had perforated my uterus and ended up in my right quadrant where, coincidentally, my surgeon also took out my appendix since he noticed it was on its way out; and of course, the whole debacle with my liver late last year, with a diagnosis that began as autoimmune hepatitis before becoming “rare but documented side effect to Lialda.” Then, of course, the stroke, with cause still TBD). What the hell, right?

I’m not going to go live off the land and eschew modern medicine in favor of herbs and crystals or homeopathic nonsense, but seriously: it feels like everything is complicated now. It’s so frustrating to be dealing with this stuff when I’m otherwise a really healthy and fit 34 year-old (and have been really “healthy and fit” for the past decade-plus).

So now, with the gyne stuff, we have to weigh the certain risks of various birth control options, but we also have to weigh the risks of what could potentially happen to me if I were to get pregnant and carry the fetus to term or if I were to get pregnant and terminate. Everything carries with it risks — and that applies to all of us, not just me — but now I feel like this whole stroke experience has opened up a huge Pandora’s box of “if/then” causal statements over which I have no freaking control.

I tried my best to put all this frustration behind me when I was running casual ovals during swim class Thursday night, a comfortable 3 miles and change, and feeling well overall. It helped.

March 9

Friday then brought with it another counseling session, and gratefully, Janet and baby Juju hung with G so I could go tend to that side of things. Therapy is hard to describe, but I think the most basic way of looking at it is by comparing it to a very one-sided friendship: one person gives and gives and gives, while the other just takes, kinda self-sacrificially. This notion (understandably) compounds my earlier sentiments, that this whole stroke experience is just making me tremendously selfish and egocentric because my world right now is my head and my brain and what’s there (or not there); anything else, or anyone else, plays a far distant second fiddle.

And that, my friends, was the week (and what a week it was). I opted to walk during swimming on Friday instead of running, and on Saturday, Janet and I ran an easy 4. Come Sunday, I met Saurabh and Dena for another easy 5, and both days felt good. I’m not worried about my fitness coming back or anything right now; honestly, just running, even plodding along, I think will do a number for my sanity and anxiety at this point. It’s not a panacea, of course, but it helps.

 

All told, for being a month out, or five weeks out, from my stroke, life is good.

It’s really, really good.

Sure, it’s scary sometimes, and if I let myself get in my head about everything, things spiral pretty dramatically and pretty quickly, which sucks.

When I stop catastrophizing about the future and ruminating on the past and instead look around at the here and now and take a deep breath, things aren’t so bad.

Things are obviously good, actually.

I can kiss my husband’s and kids’ faces and hold my family members in my arms.

We can all cuddle together on the couch, making a big “family pile” in the process, with each of us affectionately smooshing the others. It’s great.

These days, I can even pick up my kids and literally run after them in the house!

I can lace up my shoes and gingerly go out for a run, enough to break a sweat and get some dopamine and endorphins coursing through me.

I can call or video family or friends from afar, or talk to local friends, when I am feeling pretty shitty and need someone to talk me off the edge.

Even better, though I haven’t done it often lately, I can listen to others when they share in the travails of their day and offer solicited (or unsolicited) feedback.

I can get in the car and drive anywhere I want — beach, mountains, city, farms, whatever — for as little or as long as I want. (California, baby).

There is so much that I can do — basically, anything I want — that the stroke could have taken from me but didn’t.

My stroke fortunately didn’t leave me with any deficits — a much kinder way of saying disabilities or impairments — but it completely wreaked my self-confidence and empowerment.

Neither my self-confidence nor my empowerment will return overnight — they were a lifetime in the making — but they will, in time.

Every day that leaves me coming out on the other side in a step in the right direction.

Every day that I get to wake up, do life, and tackle the minutiae and the Big Stuff is what I want to be doing and will help me inch ever-closer to normalcy.

No doubt there will be days that leave me grappling with fear and anxiety and frustration — Tuesday, I see you, you dirty SOB! — but as I get further removed from my stroke trauma, and the more tools with which I learn to equip myself, the better able I will be to handle the valleys when I seem to fall headfirst off the peaks.

So: how am I doing one month post-stroke? Fine. Better than fine.

…and each day helps me become finer.   

Thank you for all your love, support, and encouragement. It means so very much.