What's it REALLY like - Recovering from Neurosurgery

As Adele would say, "Hello from the other siiiiIIIIiiiiide!"  

I'm officially considering myself recovered from the neurosurgery I had six months ago.  There is a gilded proclamation, signed by the mayor, and all the people of the kingdom are rejoicing.  

Why yes, I do still format my blog like it's 2010.

Ok, not really.  What really happened was a week or two ago I thought to myself, "Huh.  I guess I'm all recovered now.  Cool."  And then it took me a while to decide to write about it.  

The Early Bits

If you read my last post about my recovery, then you pretty much know how the rest of it went.  It was several cycles of, "I'm doing a bit better. Guess I should go down on meds," followed by, "Everything is literally the worst and it all hurts and ugg why am I not as fit and healthy as an Olympian yet?!" with a little bit of, "I'm doing ok, and thankful for what I've regained, and I feel stable."  Luckily, I don't remember most of it.  

From what I do remember, I saw the nerve pain in my hands slowly get better during this time.  My endurance improved quite a bit, quite quickly.  My recovery in general was much quicker than usual, though while I was in the thick of it, everything seemed to take way too long.  The thing that did take longer than usual was getting back to my baseline of meds, but I honestly think better pain control and steroid coverage ends up helping recovery go more smoothly in the end.  I'll have a few extra pounds to lose, but that's life with adrenal insufficiency for ya.  And it seems my parents survived being stuck in the same house as me while I was a grump, so it's a win all around!     

The Middle Bits

Speaking of wins, this is the part where I put together a scorecard of what I gained/lost from this round of neurosurgery.  Overall, I can only conclude it was a huge success. 

The good:

I can finally flipping breathe again!  As long as I'm not laying down completely flat on my back, I basically don't notice any restrictions in my breathing muscles.  

No more leaks!  I've had enough coughing fits (thanks athma!) and sneezes to know that my leak is successfully patched!  

My sitting tolerance is great now.  Basically I can sit for as long as I want.  That's much better than the 1-2 hours of sitting up once every few days that I used to be thankful for.

My neck is much more stable.  I don't have to put my skull back on top of my neck constantly anymore.  My spinal cord is very much enjoying not being squished and pinched.

Unless I'm tired or overworked, I don't really look like I've had a spinal cord injury.  My leg strength is pretty good, I don't trip as much, and I don't look like a drunk zombie T-Rex when I walk.  My adventures have taken me both up and down some very steep hills without much difficulty, which is way more than I expected to ever get back.  

My muscle spasms, while still a problem, are much better.  I think I've only had one or two days in the last month when I felt really incapacitated by them.  

There's probably lots of other good stuff too.  I just don't remember it and it's just normal for me now.  I love when I can take stuff for granted.  

The meh:

That nerve pain I woke up from surgery with is still frustrating.  It's a lot better, but I still have to be very careful how I use my arms or I'm in for a rough time.  I can't throw a ball for my dog, or cook much, or walk with my arms loose down at my sides.  And forget about reaching for anything!  I basically had to stop PT because the exercises flared me up any time I did upper extremity anything.  Every couple weeks I try some light exercises and I quickly learn that it's not time for that yet.  The good thing is that I can finally crochet and draw again.  And if I protect the angry nerves, the nerve pain fades more into the background instead of something that has my attention all the time.  Sometimes I don't even have any pain at all on my left side.  I'm frustrated, of course, but grateful for the progress so far and still hopeful that I'll continue to get better.

Somehow, despite having half a hardware store in my spine, one of my levels is still wiggly.  This really freaked me out at first because in the past it's always meant more neurosurgery.  But so far, this one wiggly level is behaving.  I do get pain and neuro symptoms when it slips "out," but I can almost always get it back "in" quickly and easily.  It's not progressing or holding me back from anything, so at this point it's more like those clouds on the horizon when you are on a camping trip and you aren't sure if it's going to be a big miserable storm that may electrocute you with lightning, or just a bit of wind and a refreshing drizzle.  It's there.  Lurking.  But for now I'm ok.  

My blood pressure still sucks.  I keep thinking my blood pressure cuff is broken, but then I go to the doctor and their cuff confirms I have blood pressure not typically compatible with consciousness.  My body is dead set on losing the fluid I take in, keeping my blood volume too low to support ambitious things like standing or walking (more on that later).  I keep upping the meds that usually help me retain salt and water, but my body is being really stubborn about letting them do their job.  I do have good days, or even good groups of days.  And during those good times, I do meet my goals of walking 1-2 miles.  But most of the time, I'm not doing a lot of standing or walking lately.  

Overall 

Not a bad scorecard.  I always know that surgery won't be a magical fix for everything, but I'll take any improvement I can get.  And I'll be thrilled and feel really lucky for each little bit of my life I get back.  

Speaking of...

This is also the part of recovery where I have an identity crisis because I'm not 100% disabled anymore, but I'm also not working or having lots of babies or traveling the world.  It's been the catalyst for me coming to terms with some harsh realities I've been putting off for a while.  

When I first got sick, it took a few years to adjust to my new reality where being sick greatly impacted my life.  There were tears and lots of frustration and then I came out the other side with a new normal I was happy with.  I actually ended up having the best times of my life during that "new normal!"  

   Then these last few years I've been working on adjusting to the slightly harder reality that being sick isn't just a part of my life, but kind of the main thing.  I have to give up a lot of dreams, maybe not forever, but certainly for now.  It makes me REALLY glad I traveled a lot, moved across the country, lived in NYC, etc. while I was able to.  There's been lots of tears and frustration lately, but I know I'll come out the other side with a new, new normal and hopefully I'll find a way to be happy with it.  People go through this all the time and it doesn't destroy them.  I'll be just fine.  

What's Next?

I think with chronic illness, it's easy to fall into the trap of thinking "ugg, it's always something" when you recover from one major surgery/trauma and then the next issue pops up.  And yes, it is always something.  That's part of the chronic illness package.  But I like to take inspiration from my favorite president in American history, Dr. Josiah E. Bartlet and ask "what's next?" instead.

The likes of him only exist in fiction.

I like "what's next."  It implies both a readiness, a gritty acceptance, and maybe, perhaps, some hopeful anticipation.  When you think "what's next?" the answer could be good, bad, or some kind of mix.  When you ask "what's next?" you are looking life in the eye and telling it you are ready for whatever it throws at you.  

So, "what's next?"

Medically, I have a new issue to pursue.  One of the veins in my neck collapsed probably about a couple months ago (RIP to my internal left jugular), so after a year of having low cerebrospinal pressure from a leak, I now have high pressure.  It's almost a little funny.    That's why my blood pressure is still so bad.  My brain thinks I have really high blood pressure, so it makes me lose more fluid than usual.  And then it's confused because it sent clearly worded notes to my body about the importance of losing all the fluid and it is still being squished, so it sends more orders to lose more fluid.  And then throws a tantrum in the form of a throbbing headache when it is still getting squished.  In addition to blood pressure issues, my vision has been funky, I don't sleep very well, I've become a total ditz (ok, I've become more of a total ditz than usual), and the constant tachycardia makes me really tired.  It has given me the superpower of being able to hear my pulse in my ears though.  So I got that going for me.  

High pressure isn't as much of a bummer as low pressure, but it is definitely not as widely understood or treated.  I had some serious issues with high pressure around 2009-2011 and it was an odyssey to find a doctor who finally diagnosed and treated it.  He has since taken a well earned retirement, and the other doctor I knew of who treats this doesn't treat that kind of vascular issue anymore.  Oh, and I may have another collapsed or partly collapsed vein that drains from my kidney.  So....yeah.  I'll be working on that for a while and hopefully find the right doctor eventually.  

  Non-medially, part of me coming to terms with my sickly reality is giving up on the idea of working in a clinic (at least for now) which means I'll hopefully be starting my own telehealth practice.  I'm pretty excited about it.  I talked it over with my boss and she's going to be really good about accommodations and vacation time and stuff.   She's pretty cool in general.  COVID has opened up lots of doors for sick and disabled people and I think I'd like to walk through some of those doors myself.  It will be a lot of work and it's not a sure thing, but for now I'm enjoying setting everything up.  It will be awesome to work again and use these skills I have to help people and communities.   

 And, then there's all the little daily delights like greek frozen yogurt, or finding a new podcast I like, or crocheting tiny jellyfish.  I have family parties and camping trips, and weddings and lots of great things to keep me busy.  When COVID dies down a bit, I look forward to reassembling a social life.  There's lots of good stuff out there.  

Like cows!

So, with the chapter of my life that is my 8th neurosurgery coming to a close, I put on my suit of bubble wrap, stare down the future with as much grace as I can muster and ask, "What's next?"

What's it REALLY like? - Recovering from a major neurosurgery

Continuing the theme of posting more comprehensive and less curated accounts of my latest neurosurgery, this post will be about what it's really like recovering from said surgery.  I wrote this as of being three weeks post op, and then went back and edited it at just after four weeks in case anyone who is going to have this surgery wants to know the timeline.  

Attitude is everything!  (Or is it?)

First, I want to paint a picture of how I envisioned my recovery.  I got a little competitive about things and decided it was going to be my BEST ONE YET!  I was going to be a little workhorse - exercising my butt off, losing more of that annoying steroid weight, getting back to doing art while still in the hospital, getting off pain meds and extra steroids in record time, and incorporating tons of "best practice" ideas from the ridiculous amount of continuing Ed classes I took on acute/chronic pain and recovering from surgery. (Seriously, I have like double the amount of hours needed this term!)  I was gunna make awesome goals and achieve them in record time.  I'm an OT, after all.  And I've done this so many times before.  I should be GREAT at it!  

Oh, sweet summer child, sometimes the body has other ideas.  

Like being anemic, for example.  Or having no endurance because I've spent so much of the last year laying in bed.  Or having both hands disabled from inflammation in my neck.  Or having tons of emotional issues from med changes.

But that's getting ahead of myself...  

The Warm Fuzzy Part

    First, there was a nice few days at the airBnB condo where I felt things were on track and I was on enough pain meds that everything just kind of seemed chill and happy.  As my doctors suspected, my health improved a lot once I was in control of my own meds and movements again.  I started eating a few well-tolerated foods and drinking more fluids even without nausea meds.  

Can't resist Mom's cooking!

I didn't have to ask anyone's permission to get up and walk, so I did a ton of condo walking tours.  Basically, I'd nap, go on an indoor-walk, eat, nap, go on a mini walk outside, rinse repeat.  Coming from a place where I struggled to make it five steps to the other side of my hospital room and back, this felt great! 

My epic journey to sit by the pool that was like 1/6 blocks away

 I wasn't super functional - I needed lots of help with basic ADL type things and was still too tired for entertainment other than falling asleep to podcasts - but that was ok to me at this point.  I did have a lot of pain, but the meds made me care less about it. This is what I call the warm fuzzy part of recovery.  It's when there's lots of sleeping and meds involved and every little thing feels like a major victory.  It's nice and dreamy and what I console myself with when I'm facing surgery.   Like, yes I have to go through hell, but I have this nice bit during recovery to look forward to.  Usually it lasts a month or two.  Usually I see the end of this warm fuzzy time as the day when I stop taking naps.  This time, that happened day 10 after surgery.  Dear universe, that was way too soon!  I wasn't ready.

Anyway, prior to the warm fuzzy part being over, I did three things of note.  I insisted on going to a craft store while still in Arizona where I'm not sure what I bought, but I remember being excited about it.  It went pretty well.  In an excruciating, but hey at least I'm having fun sort of way.  

Yay!  I got "out!"  Now I'd like a two hour nap, please.

 I also flew home, which was an adventure in pain and lack of endurance.  Luckily I just upped my meds to get through it and have already mostly forgotten the whole ordeal. 

The girls roughly 15 minutes after arriving home.  

 The next day was Easter and my wonderful extended family did all the cooking and came to my (parents') house so I could participate.  (Everyone is either vaccinated or quarantine or both.)  I sat up at the table for brunch and had conversations and everything.  And then, that evening, I took my last nap.  At least it was a REALLY good nap.  

The Long Haul

Which brings me to the next part of recovery, which is the hard part.  This is where I'm in it for the long haul, often get frustrated, and go a bit bonkers from all the medication adjustments.   It's also where I see the most improvement and have the most joy as I get back to "normal" life.  It's complicated.  Like life, but more acutely.  

The day after Easter, I started going down on meds which is supposed to totally not have any withdrawal effects because of how small my doses are and how short of a time I'm on them and how slowly I go down. 

 Nope.  Lies.  All lies.  

Instead, as I described it to my dad, "My brain is marinating in crazy juice and I have no filter.  Good luck."  My parents would not be remiss in investing in a good pair of headphones or earplugs.  Coping mechanisms that are usually great?  All the CBT you've worked on for years?  Tending to be a rather stable and happy person?  Yeah, guuuubye to that!  Instead my brain becomes a constant stream of agitation and I get in thought spirals which are really unkind to myself.  Things like "lazy" and "I'm sorry" and "why can't I just..." come up a lot.  

This was coupled with what I considered to be a much slower recovery than I had planned for myself so far.  The first week home was rough.  I basically couldn't use my hands due to moderate to severe nerve pain. I wasn't improving in my ADLs or IADLs because hands are sort of important for most of those.  I definitely couldn't do art, but I also couldn't even really use my phone or other electronics for longer than a few minutes at a time. 

Bad hands!  You are in time out!

 I basically could listen to podcasts or watch TV.  So that left me having way too much time for my crazy juice marinating brain to ruminate on how my body wasn't cooperating with my very competitive ambitions.  It was tons of fun and I was tons of fun to be around, I'm sure.    

My "first weeks home" aesthetic 

My endurance was atrocious with "walks" sometimes only lasting a few house lengths and me having to spend a couple hours recovering afterwards. 

Yay, I made it six houses.  Now I need to go lay down for a few decades.

  Also, all the layers I'm wearing are because my neck is very sensitive to cold.  Even in ambient room temperature, I'll start getting major muscle cramping.  I basically live on heating pads and bundled up, even when it's warm outside.  I wonder what the neighbors think.  I don't care, but I do wonder.  

Things started coming together for me around week three post surgery (which is pretty typical).  I regained the use of my hands and to some extent, my arms for longer and longer periods of time.  My brain chemicals balanced out from that round of going down on pain meds.  My pain became much more manageable.  My endurance for sitting skyrocketed.  Even though I still "failed" many walks, I was reaching distance goals most days.  

Yay I finally made it down the whole street to the park!

And because my memory is terrible right now, I got to celebrate this "first" twice!

And had a freak energy spike and made it AROUND the park one day!  There was much rejoicing.  (And now frustration because I haven't managed to replicate this achievement since.)

Even though I still have times when I "literally can't even" and need lots of assistance, I have more times when I am reaching ADL, IADL, and exercise program goals.  (I also wanted to write that I am being less competitive about things, but then I reread this paragraph....  On that same note, I lost my fitbit.  I had just deemed myself responsible enough to start counting steps without going crazy about it and my fitbit just disappeared off my wrist later that day.  Like I have no memory of taking it off, let alone where I put it.  It was just there....and then gone. Maybe the universe is trying to tell me that I'm incapable of being only a healthy amount of competitive.)

Update: Week four has been a bit more difficult, but I'm still doing well all things considered.  My angry nerves flared back up as soon as I started trying to do things other than walking or sitting in bed, so I'm back to being pretty limited in what I can do.  And since it's nerve pain, it has the lovely habit of not hurting while I do the thing that angers it, and instead all the pain catches up to me a few hours later.  So it's really hard to gauge what I can and can't do which interferes with function and therapy.  As I feel better, I get more vain too.  I'm none too pleased with the additional steroid weight I've gained, or how the meds make me break out and have the dreaded steroid "moon face."  I'm starting to notice things like when my hair is a mess or my outfits way overproritize comfort over presentation.  I think the less I come in contact with mirrors the better for now.  haha  

 But on the bright side, I'm getting more consistent with walking.  I "fail" less walks and can make it around the block most attempts.  That's a good distance baseline for now.  My endurance is definitely still improving for both sitting and walking and hopefully soon, for (COVID safe) outings.  My balance, which gets kind of off after every fusion because of the new way my body moves, is much better and I'm much better at eating without dropping half my food back on the plate as I get used to my new neck position.  I'm progressing in PT and needing less help throughout the day.  I've gone down on meds a couple more times and navigated the resulting crazy brain a bit better.  I even went on my first outing to visit my grandparents with my brother and his fiance!  Everyone agreed that it was the healthiest they'd seen me in a VERY long time.   

That's kind of where I am now.  Life is still small, but already bigger than it was pre-surgery and continuing to grow.  I vacillate between celebration and frustration as I navigate the bumpy road of recovery.  It's definitely not linear, but the trend is overall a good one.  And if it all goes well, and I put in a lot of work, in five to twelve months from now I'll be in good shape (for me) and, fingers crossed, ready to get back to "real life" whatever that will look like.  I'm hoping for walking two miles a day, going to work part time, and being able to travel again.  But really anything that's not laying in bed most of the day is pretty awesome!

And for fun and as a thank you for getting through this ill-proofread post, here's some pictures of my dog "protecting" me while I rest.  It's her fun new hobby she's picked up since we got back home.  

What's it REALLY Like? - An unflinching account of neurosurgery.

 If you look through my facebook feed for the past month, you will get the impression that I'm some kind of energizer bunny - always smiling, always meeting my goals, always pushing forward and upbeat and optimistic.  The reality is much more complex.  

I don't have the intention of being misleading, but I feel that there are certain things for facebook and certain things that belong on blogs, or in journals, or in personal conversations.  Facebook is for happy updates and puppy pictures - Simple things to scroll through in your newsfeed.  Easy quick ways to keep people updated that yes, I'm still alive and things are going "well."  

This post will be for people who are curious about the more intimate details.   Maybe you're facing a similar surgery and want to know what to expect, or maybe you are just curious and want to know more about my life.  Well here it is, my accounting of what it's really like to have a major neurosurgery. 

Why I needed surgery

This was pretty usual.  And very uncomfortable.  

I have had a BUNCH of neurosurgeries already and some of them had some complications.  Over time three main issues stood out as needing to be fixed.

1. My alignment was off because I had a patchwork quilt of hardware.  So in addition to looking like a hunched linebacker (oh hey, vanity!), I was having cord stretching/compressing symptoms.  For example, I couldn't lay down flat and still be able to breathe.  Breathing in general was pretty hard.  The day before my surgery was an average day.  Not good or bad.  I could barely make it through a 3 min walk because my breathing muscles were just too weak.  The whole last month before surgery, I think I only went on one or two walks and took the whole rest of the day to recover afterwards.    

2. I had a wonky screw that poked my dura at C1 and caused repeated CSF leaks.  When the leak was bad, my headache and nausea were so bad, I couldn't leave my bed other than to go to the bathroom.  I even ate meals laying down.  On less bad leak days, I could get 1-2 hours of sitting up time a day.  Once or twice a month I'd have a great day where I could do something cool like geocache, go to the beach, or sit up for 3-4 hours at once. I was also having crazy terrible blood pressures because the leak prevented me from holding enough fluid to keep up a functional blood volume.   Because I was so prone to leaks, I had a ton of activity restrictions and dreaded things like sneezing or coughing.  It was a bummer.   

3. My skull to C1/C2 fusion never formed a bony fusion for some reason and so my skull was slipping out and rotating a lot.  This caused a lot of moderate to severe pain, muscle spasm, and increasing cord/brainstem squishing symptoms like my legs and arms not working sometimes.

So my life pre surgery was mostly spent in bed with brief and cherished exceptions.  I'm used to the chronic illness roller coaster, but this was next level.  I could sprout a leak at any time and then it was goodbye to the next 3-10 days.  I could develop a really stubborn muscle spasm and then it was bed for me for that too.  Or I could just have a bad cord day and my breathing/arm/leg/trunk muscles weren't able to support me doing most activities.  It was pretty brutal.  I would literally miss my parents and dog who were in the same house as me, but I couldn't really interact with them because I needed a cool/dark/quiet space.  I did up my anti-boredom skills, find some great podcasts, and got pretty "live in the moment" zen about life (when I wasn't freaking out about everything, that is.)    

The pictures I posted on facebook from this time are mostly of the good or great days.  I guess that's misleading, but...eh.  Who wants to see a picture of the view of my bedroom wall for the 5th day in a row?!?  Or the 99th photo of my blood pressure showing I'm so dehydrated I would be in the hospital if it weren't for a current COVID surge.

2020 was a rough time for everyone.  I was just joining the club in my own unique way.   

Finding out I needed surgery

It was a long, convoluted, and stressful process.  COVID complicated things further because access to healthcare became quite difficult in some cases.  

There were many doctors consulted, lots of tests, looooots of shoulder shrugs.  Sometimes I worried that this was just my life now.  But I found someone to help and eventually COVID calmed down enough that I could have surgery.  Yay!  This part is boring, so I'll just kind of skip it.  I do want to say that my mom basically was the one getting everything done because I was too sick.  So big thank you mom!  And big thank you to some amazing EDS neck surgery friends who helped guide me in this particular part of my journey.  Yall saved me.  

Now skipping right to... 

Pre-Op

Two VERY nervous ladies.

Usually I'm pretty relaxed the day before and of surgery.  I sleep fine.  No tears.  I have the easy job, afterall.  I just get to take a really long nap.  The surgeons do all the work and the family/friends do all the worrying.  By the point of pre-op I usually describe my frame of mind as I'm already strapped in to the roller coaster, it's going up that big scary hill, and since there's nothing I can do to get off at this point, might as well just go with it.  

This time I wasn't so calm and peacefully resigned.  I was pretty nervous the day before, hardly slept that night, and was unusually emotional in pre-op.  I was grumpy and upset that I had to go through this even though I knew that it was 100% what I desperately needed to do.  Usually I'm pretty good at monitoring my thoughts and turning on the optimism switch.  But this time I knew in painfully intimate detail what I was in for with this being my...7th? 8th? neurosurgery.  My optimism switch going full steam ahead meant thinking about surviving the surgery with the fewest complications possible and hopefully seeing some improvement to quality of life further down the line.  I knew I was in for a bad time even if everything went perfectly so there wasn't really a happy place for my thoughts to go perch.  

This meant I didn't joke around with the nurses or respond to their efforts to engage me with conversation.  I fiddled with the rough hospital blanket and tapped my toes against the end of the bed.  I stared off into space a lot.  I forgot who every nurse, resident, and tech was roughly 1.5 seconds after they introduced themselves.  I even, wait for it, cried when I hugged my mom before they wheeled me away for surgery.  Like, I cried a lot.  I've definitely never done that before.  I have reoccuring nightmares where I'm in pre-op and I scream, cry, and beg them to stop.  "Please, please don't make me go through this again."  I wasn't so far gone as that, but that energy was definitely closer to the surface than usual.  

Here's the nice thing about pre-op people that helped me get through this tough situation.  They are wonderful, empathetic human beings who have seen it all and know how to help support their patients through a range of emotions and reactions.  They used an ultrasound to guide my IV placement which was almost painless.  For my fellow wonky veined people, you know how amazing that is!  They explained each thing they did and got my consent before proceeding.  Even the marks they put on my body to help guide the surgery were done gently and carefully.  They got input from my mom and I about managing some of my more complex health issues during and after surgery.  The room was full of people, but it really felt more like a team than a bombardment.  It's how medicine should be.  

When it was go time, they gave my mom and I just the right amount of time and space before wheeling me away.  They assured both my mom and I that they'd be giving me something shortly and "I wouldn't care about much" after that.  I really appreciated how they took care of both of our emotional needs.  

Within a minute, whatever that stuff was that they pushed through my IV, got me that optimism switch reinstalled.  In the space of a breath, my tears dried up and I giggled, "you weren't kidding.  I really am all good now."  From that point on, I think they could have probably amputated my leg while I was awake and I would have been pretty chill about it.  "If only it was so easy to control emotions all the time," the anesthesiology resident told me.  The nurses got me talking about my dog and then it was lights out for me.  I fell asleep calm and knowing I was in good hands.  

Post Op (ish)

My usual post-op experience is pretty traumatic.  It's what I have the most nightmares about.  It's where my brain flashes back to when I get a whiff of "hospital smell."  Waking up after surgery usually feels like crawling out of the grave while fully panicking and being bombarded with way too much sensory information.  It's flipping terrible.  

But this time, things were much more pleasant.  I had talked to my doctors ahead of time and though we agreed that some people are just panic wakers, there were things they could do that may help.

One thing that helped a whole lot was that I didn't really do the post-op thing this time, at least not consciously.  Instead I stayed intubated overnight in the ICU to protect my airway and was sedated enough that I just slept and healed.  That's over 12 hours of pain and panic that I didn't have to go through and I am so appreciative.   

ICU

Because I was intubated and "medically complex," I spent a few days in the ICU.  That's where I finally woke up from surgery over a day after I was put under.  I woke up feeling calm, warm, and surrounded by people helping me.  I knew I was intubated (it's uh...hard to miss a big honking tube breathing for you), but I wasn't really all that bothered by it.  I must have been at some point though, because I did have the naughty cuffs on, aka my arms were tied to the side of the bed.  Oops!  Hope I didn't give anyone too much trouble. 

As I woke up, the pain went from a persistent irritant tugging me away from the nice warm happy sleepy place to a BIG FLIPPING DEAL.  Thing was, I couldn't express this because my mouth was currently busy hosting a large tube (and I later learned other things like a feeding tube and stuff.)  I was grimacing, but I think everyone thought it was because of the tube.  So here's where I brag a little because even in my drugged, pained, mobility limited state, I figured out I'd tell them all about my pain woes using sign language.  I'm not very good at ASL, but I definitely need to thank fellow SASer, Destiny for helping me learn some of the basics.  So, I persistently fingerspelled "O-U-C-H" and used "yes" and "no" signs until someone either came in the room who knew ASL or figured out what I was getting at.  Oh the relief when someone finally understood me!  

Things, perhaps for several hours, are a bit blurry from there.  I was in and out, often fingerspelling more "ouches" and answering "no" when asked if the tube was bothering me.  (Honestly, I had been having trouble breathing for months before surgery.  Some extra help was kind of nice.)  I would have little fleeting thoughts of concern like, "Hey, I'm intubated and that's maybe not such a good sign." or "How did the surgery go?" or "My mom isn't here and she's supposed to be, so who is monitoring my cortisol stuff to make sure I don't have a crisis?"  But mostly I was chill.  Part of that was because all the people in the room always spoke as if I could hear them and were very reassuring.  I heard a lot of delighted doctors and nurses commenting on how well I was going down on the vent settings and how great my airway looked and stuff like that.  So I knew I was doing ok.  (This is the same ICU that had been through MONTHS of intense COVID overload.  I think seeing someone come off a vent nice and easy was especially gratifying after all the trauma they have been through.)

Taking the tubes out wasn't that bad.  It sounds like it should be, but they just ask you to cough and then out it comes.  It's not comfortable, but it's not terrible either.  Once it was out, and after a few false starts, I could get out some raspy words and there was much rejoicing in the room.  There were some pretty...um violent things done to my neck and airway during surgery, so being able to breathe and talk right away was pretty great.   

Sometime around then, the pain got completely out of control ( I think there were some coughing fits involved in taking the tube out) so they put me on a ketamine drip.   

Oh boy.  

That stuff is...intense.  I did not care for it at all.  It did help the pain quite a bit, but it did STRANGE things to me.  Like I developed a weird kind of...synthesia maybe, where every sound was represented by a mathematical equation.  Simple sounds like the beeps from my heart monitor were easy or partial equations, but more complex sounds, and especially people talking, completely overwhelmed my brain with equations.  It was like someone was frantically writing on a blackboard and never having time to erase what was underneath before starting on the next equation.  It was not super fun.  My brain also did this weird thing like dejavu but to the point where it felt like I was constantly time traveling.  All this could have been VERY frightening, but luckily one of my BFFs had warned me about ketamine years ago and coached me on how to relax during the "trip."  (Thanks Robert!) So I just kind of floated around the ceiling, traveling through time, and swirling through complex mathematical equations while trying to take deep calming breaths and stay chill.  And it really did help with the pain.  

At some point my mom was finally allowed in.  We had special permission for her to be able to stay with me despite COVID visitor restrictions because my mom manages my adrenal issues when I'm incapacitated.  (The order in which people recognize I'm having adrenal issues is 1. my dog 2. my parents 3. me.........way further down the line: everyone else.  Even endocrinologists are not great at managing my adrenal issues.)  It was absolutely wonderful seeing her and getting to hold her hand.  I'm normally pretty sensory adverse to things like hand holding, but I still find it super comforting when I'm really scared, hurt, or miserable.  It was still hard to talk at that point, but I did manage to ask how things went.  I don't remember what she said, but I it seemed to be an overall positive sentiment.  So off I went back on my time traveling mathematical trip.  

Some time later, I started feeling real bad.  I got so nauseous that I was maxed out on anti-nausea meds, couldn't open my eyes, was absolutely drenched in sweat, and thought maybe I was having an adrenal crisis.  Or possibly dying.  I really felt that sick.  I guess I must have communicated this because they did some quick tests to rule out adrenal issues and then they took me off the ketamine.  Thank flipping goodness!  I very slowly started to feel better.

The next few days are pretty hazy.  I know I didn't feel well a lot of the time.  Like even more than I would expect after surgery.  But the ICU people did do a pretty good job with pain control.  By that, I mean I was still completely miserable and making embarrassing chewbacca noises most of the time, but I also could occasionally get comfortable enough to rest and sleep.  I even got quite chatty in that magic spot where I wasn't drugged asleep or writhing around in pain.

All my nurses were wonderful, but I had one night nurse who was just...beyond awesome.  Nights in ICU were kind of like a slumber party with those deep, fun conversations.  I legitimately would love to be friends with this dude.  We talked about all kinds of things and it really helped to ground me to real life outside of the neurosurgery nightmare.  We talked about how we admired Buddhism, and how helpful having that frame of mind could be in times of great suffering.  I did A LOT of reigning in thoughts, living in the moment, focusing on the next breath, etc. over the next several days.  It was a great reminder of some great strategies exactly when I needed them.  

Another wonderful visitor I had while in ICU was the chaplain.  I'm not a terribly spiritual person, so I usually feel a little uncomfortable around chaplains.  Like I totally value what they do and what they offer, but I worry that I'm just wasting their time?  Also, usually I would rather sleep then talk to anyone, so I just sort of universally am not thrilled with visitors.  But this woman has a presence about her that made me perk up out of my medicated/pain haze.  She did a great job of engaging me and finding out what I needed.  Through some conversation, I found out she often sang for people and that sounded perfect.  She was gearing up for the Hawaiian rendition of Somewhere Over the Rainbow when she mentioned Carole King's You've Got a Friend.  That is a VERY special song to me because it's what my dad sang to me every night when I was a child.  At this point it had been several days since surgery and I hadn't been able to see my dad because of those pesky COVID restrictions and that was really hard emotionally.  So, she sang the song beautifully and I had a big smile on my face thinking about my dad and I think there may have been some crying by all of us.  It was just completely beautiful and perfect and I I'm going to write her a very nice thank you card once I can write again.  

Neuro Floor

All good things must come to an end, and a bed eventually opened up for me on the neuro floor.  Everyone there was also wonderful, but I missed my ICU nurses and the better pain control I had there.  In the ICU it was all about stability and comfort, but once I was on the neuro floor, I had to like, do things.  And I was not feeling super up for that.

I sweet talked the nurse/doctor into letting me have the catheter in for an extra day because I was too sick to get up to use the commode.  (Also, I love catheters after surgery.  My bladder isn't super great at functioning on a good day, and after surgery it throws tantrums that make it VERY hard to pee.  I'd love to have a catheter full time if I could get away with it.  There, now you know more about me than you ever wanted to.)

I kept trying to sit up which was one of my first goals.  I'd proudly ask my mom or one of the nurses "Am I doing it? Am I sitting?" and they'd have to break it to me that, no I was at like 15 degrees. 

 

I knew that prior to surgery, I was supposed to be "sitting up in a chair to eat breakfast" on day one and maybe discharged by day 3, and I was majorly failing to meet anything close to these goals.  

I started to get a sort of anxiety reaction to the sound of the hand sanitizer machine going off outside my room because people kept coming in and wanting me to do things.  Not just sitting, but drinking, eating, transfering to a chair...all things that I was WAY too sick to do.  To put it in perspective, I had enough endurance to go to the bathroom using a bedside commode, OR take a few bites of pudding, OR drink some ginger ale in a two hour period.  It was awful.  I felt aweful.  I wasn't meeting goals which I was oddly embarrassed about.  It was just a really bad time.  When OT/PT recommended 2-3 weeks of acute rehab after discharge from the hospital, it sounded about right.  Also, I was kind of too sick to care.  

On top of that, there was weaning off IV meds to oral meds which made the nausea worse and made me a little withdrawl-y.  I was taken off some very important meds cold turkey the day of surgery so was definitely withdrawl-y from that.  The high doses of steroids I was on made me sick, agitated, and grumpy.  I wasn't able to sleep properly due to pain, constant interruptions, and horrible PTSD nightmares.  Evenings were especially bad with restless leg and extreme agitation.  I would also wake up in the night and have no idea where I was, why I was hurting so much, and why I felt so sick.  I have hospital nightmares all the time, and it was a huge bummer to finally understand that I woke up to the nightmare being the reality.  Super fun.  I also worried that something was wrong with me because I was so sick.  Like maybe there was something everyone was missing.  Which is pretty scary.  Nothing like being really sick and no one knows why.  Ugg.  Basically, on top of feeling really crappy physically, I felt really crappy mentally.  

Thank goodness for mom helping me through some of my regularly scheduled evening crazies. 

So I had some pretty bad days where I was just stangnating, frustrated, and miserable.

I do want to say that everyone was wonderful about treating me though.  The OT/PT and nurses always knew just the right amount to push me and reassured me when I wasn't so great meeting my daily goals.  The nurses were AMAZING.  I have this weird anxiety thing about having to pee when I'm not allowed to get out of bed without a nurse because sometimes it takes like 30-40 minutes before they are available to help me to the bathroom.  (So I have learned how to turn off bed alarms and sneak in a quick bathroom break.)  But the nurses were so attentive that I never was in a situation that my bladder was bursting (unless it was due to me being too tired to get up to pee).  The doctors were great at explaining everything as many times as my muddled brain needed and working with my parents and I to figure out why I was so sick, how they could get me to eat, etc.  I also was allowed to keep my central line which was great!  I know they aren't super safe, but man are they convenient!  Meds go in without any pain, they can take blood without sticking you, it was just a little workhorse while all my other IV sites blew one by one.  I think I could write poetry about my love for my central line.  

Anyway, I think we kind of figured things out around the 5th day.  Turns out, I was taken off some VERY important medication that my body needs in order to retain fluid AND I was taken off IV hydration AND I was refusing to drink because of nausea and being too exhausted to get up to pee.  Oh, and I was extremely anemic.  Each of these things separately were, "well tolerated by most patients."  But I'm a special snowflake medically complex person and I couldn't handle one of these things, let alone all of them.  So after some negotiating, I was put back on my water retention meds, given some IV hydration, and given two units of blood (in addition to the transfusions I had during surgery.  I guess it's pretty normal to bleed a lot during such things.)  Shout out to my mom for figuring it all out and going to bat for me because I was too weak/miserable to advocate for myself.  And for my dad raising the alarm the day prior because he just knew something wasn't right.  I'm not a patient who typically lays about in bed.  The fact that I wasn't walking laps around the hospital floor meant something wasn't right.  Oh, and shout out to the doctors WHO ACTUALLY LISTENED TO OUR CONCERNS, TALKED IT OUT WITH US, AND THEN CAME UP WITH A PLAN AS A TEAM.  There wasn't any ego and every choice was thoroughly explained.  Have I mentioned that Mayo Clinic is Disneyland for sick people?  Because it is.  It's everything right with medicine and should be what everyone strives for.

So this basically makes me a vampire, right?

By late evening on day 5, after just half my transfusion, I was already feeling better.  My nurse commented that it was the first time I'd really had a conversation with her.  Before that, it was just too much for me.  Like to put it into perspective, I found out she was such a Harry Potter fan that she named her dog Ginny and my response was, "cool."  That's it.  "Cool."   If I had felt better, I'd have kept her in the room for hours discussing Harry Potter fan theories.  

I was still weak and exhausted, but I was doing more "me" things like walking a few extra steps every time I got up to go to the bathroom or asking to brush my hair or listen to an audiobook.  I also started tolerating eating and drinking again.  Ish.  Which was a huge relief because I knew I needed to eat and drink to heal, get stronger, and get discharged. 

Overnight, I had such a transformation that by the 7AM rounds on day 6, the neuro and endo teams and I decided that I could be discharged later that day and not even to acute rehab!  I was flipping elated!  I was going bonkers by that point and just wanted to get out and be in charge of my own movements and meds.  The doctors agreed that would be what was best for me.  So then I just had to wait on a few tests, prove I could eat (thank you cereal!),  do paperwork, etc.  

This is my YAY discharge face!

I tend to have a rough emotional time right before discharge and this time was no exception.  I cried a lot because...happy?....sad?....scared?....Relieved?  No idea.  I was very agitated, so there was a lot of clawing at my blankets and kicking my feet.  I dunno, hospitals make me go a bit nuts.  

Things got SO much better when my dad got there!  I don't remember all the specifics, but I know there was some hand-holding, reassurance, happy talk about how they'd prepped the airBnB for me, and an attempt to watch the live action Aladdin.  (I say attempt because there were lots of interruptions and I had trouble focusing.  

Multi-tasking Wonder Dad who did caregiving and work 

I got to go on my first trip out of my room just a couple of hours before leaving the hospital which is not typical.  Usually they want you to be walking and even doing some stairs before discharge, but I was happy my team recognized that me managing my own meds at "home" was more important than that.  So anyway, I had a very nice dude wheel me to get x-rays and back.  I think I scandalized him and a few other guys in the elevator when I said I loved Boston winters.  People do not tend to live in Arizona because they like the cold.  haha  The adventure through the hospital was a good preview for the ride home-ish so I knew to ask for anti-nausea meds and muscle relaxants right before discharge.  Which helped a lot!

Since discharge was imminent, I snuck my external adrenal gland (aka cortisol pump) back on.  It was SUCH a relief to be back in control of my steroids!  Prior to that, I was on a flood/famine steroid schedule when what my body really needs is a steady infusion that follows the usual cortisol curve.  Hearing my pod clicking away, delivering meds was just fantastic. Once on, not only was my basal rate back to what I needed, but I was in control of updosing when I needed to.  (Generally I do tiny updoses a few times a day to mimic how a normal body would respond to the environment.) 

love this lil dude

One of the last things I had to do was get my central line taken out which is...let me tell you, a super weird experience!  It only hurts a little bit, but it feels like someone is pulling a giant worm right out of the center of your chest.  Gave me the  heebie jeebies!  The site ached for a while afterward, but it overall wasn't nearly as bad as I thought it would be.  In fact, none of the drain, arterial line, IV removals were that bad.  I had some minor wound care issues because of an allergic reaction to adhesive, but those are healing nicely too.  

Then my dad packed up all my stuff and I got to go home(ish)!  The drive wasn't fun, as you REALLY feel each bump, but it wasn't horrible.  Dad had mapped out the least bumpy route ahead of time, which was awesome.  

Just having the endurance to sit up long enough to get the 15 min to the condo, which was impossible the day before, was merely challenging that day.  I even walked a few steps into the condo to celebrate.

This is the first picture that I feel really looks like "me" in months.  (Minus the crazy hair.)

  

It was SUCH a huge relief being back in a comforting space.  And it was such a relief to finally feel like I had my head above water from an overall medical standpoint.  

The condo was beautifully adapted thanks to my mom's amazing thrifty and creative assistive tech skills.  I could relax and safely move around right away.  It was beautiful.  There's no happiness quite like being home from the hospital happiness!  

That's it for now.  I'll do another one of these about how recovery is going since then.  But this is already obscenely long.  Also, sorry about my lack of proofreading skills.  Also, sorry about my oversharing.  I'm still on lots of meds.  :0)

Vaccinated! What it's like to get the COVID vaccine.

I am extremely fortunate to have received both doses of the Moderna COVID vaccine.  Since it's been a little over a week since my second shot, I wanted to share my experience for people curious about the process or side effects.  This is especially true for people concerned about getting the vaccine while being chronically ill.  For the record, I am in overall pretty poor health right now and have several chronic health conditions such as anaphylaxis/MCAS, Ehlers-Danlos, dysautonomia, adrenal insufficiency, and spinal cord injury.  

Basically, the whole process was simple and efficient once I got over the barriers of finding out if I qualified and how to sign up for an appointment.  (I recommend checking your local government's website to find if/when you qualify.)  Checking in for both appointments was quick and easy with excellent accessibility, COVID precautions and crowd control.  I don't think either time took more than an hour even with needing to wait extra time in the post-shot monitoring area because I have a history of anaphylaxis.  Every single person was really nice and helpful.  

I had zero side effects from the first shot.  Zero.  My arm wasn't even sore.  I did not need to take any medications, or increase my dose of medications. 

I did have some uncomfortable side effects from the second shot, but nothing horrific or dangerous.  As recommended, I did not premedicate with tylenol or anti-inflammatories in anticipation of having symptoms.  I did increase my basal rate of solu-cortef by 5% starting the morning of my second shot.  (My body doesn't make its own cortisol so I get it through a medication pump and have to constantly adjust my dose.)

Initially, I just had arm soreness which wasn't a big deal.  But almost exactly two hours after the shot, I quite suddenly developed a headache, got really congested, and felt flu-ish.  Over the next couple of hours I developed a low grade fever.  I had planned to garden, but didn't feel up to it so relaxed the rest of the day instead.  By that evening, my fever was going up and I was getting really uncomfortable, so I took tylenol with dinner and again later that night after the first dose wore off.  I upped my solu-cortef basal rates too.  With those adjustments, I kept my fever below 100.6.  Not too bad!

The next day, I still felt like I had the flu.  In terms of severity, I would put it at less than swine flu, slightly less than mono, and about the same as my reaction to the yellow fever live vaccine.  Even though I felt pretty bad, I was actually more functional than usual due to the increase in steroids reducing my chronic illness symptoms.  I puttered around the house and took it easy and was glad that I had already canceled everything I had to do that day.  There may have been some bitter complaining and feeling very sorry for myself too.  Maybe.  

   That night was the worst for me.  Even with tylenol, I felt terrible and the headache was really bad.  Like lay in bed and can't do anything level of feeling bad.  Luckily, I was so exhausted that I fell asleep early.

The next day, I was achy, tired, and had a manageable headache.  I didn't need any tylenol and I was able to lower my basal rate of solu-cortef a bit.  I still only felt up to lazing around the house.  That is until around 6:00 that night when I quite suddenly felt all better.  Just like that.  The symptoms left as quickly as they came on.  

I had a slightly sore/itchy arm and needed a slightly higher solu-cortef dose for a few days after, but otherwise was fine.

Overall, the few days of feeling fluish was a small price to pay for being vaccinated.  If I didn't know it before, being able to hug my (also vaccinated) grandpa on his 95th birthday really brought it home for me.

10/10 would recommend.  Please get vaccinated as soon as you qualify!  And please feel free to reach out with any questions!  

**None of this is medical advice.  Just my experience.**