Niki Naeve

Part 3 – Flying the Coop

I wanted to let you know that guru is now live on Insight Timer!

If you’re not familiar with Insight Timer, it’s a veritable cornucopia of well-being options! There are classes, sleep stories (my personal addiction) and short meditations you can use as tools to get through your life and your day. And you can access most content for free!

The Sanskrit mantra repeated in this song is known as the guru mantra. The guru mantra acknowledges lessons learned through life experiences, from one another, and our teachers. It also acknowledges that much teaching comes from wisdom deep within ourselves.

I wrote this song as a tribute to Tony Pavao, my first voice teacher and someone I consider an important guru in my life.

Now… The Untethering – Part 3 – Flying the Coop

Colin stopped by late morning and found me sleeping, so he slipped away to grab something at the cafeteria.  Future untetherers – FYI, we saw an Au Bon Pain under construction downstairs in the hospital which promises to open soon, so future visitors may enjoy superior food options!   Yayyy for small pleasures.  Good coffee, anyone?

My pain was well managed.  For all the hubbub about controlling any medications coming in or out, facilitation of pain meds actually seemed almost casual.  Every now and then a nurse would drop by and ask – “Which do you want, Oxy or Dilaudid?”  – one thing I wish I had a better answer for.  If I’d known I’d be given a choice, I’d have studied a bit beforehand about any significant differences between these things, and how I personally react to them.  I just didn’t know what to say, …so I ended up defaulting to something like, “Um, whatever you think?”

On the phone a week before, I’d been interviewed regarding any dietary needs.  I’m one of those people who “tries” to be on a few different diets – gluten free, autoimmune paleo, low histamine, and low acid, to name a few – but make exceptions frequently.  Dude, I have done the elimination thing.  And the gluten free thing. And the low FODMAP and low acid and low histamine thing.  None of them really made a huge difference for me.  (Possibly because the biggest problems with digestion for me are actually anatomical, like slowed motility, SMAS and MALS.)  I knew they wouldn’t be able to follow my diet to a tee and was comfortable with that.

So, I got gluten free options when those were available, but ate some other stuff, as well.  The lady on the other end of the phone seemed pretty excited about how good the hospital’s gluten free cookies are, so I made sure to sign up for those.

The pot pie I had in recovery was probably the best food I had the whole stay.  (I have no idea if it was gluten free.)  Later, like, they’d give me a choice of vegetable and whatever came was almost unidentifiable as a vegetable.  Think precooked, pre-mushed and unsalted carrots.  Like baby food.

I hate wasting food, but between that, the fact that food kept arriving off my usual eating schedule, (I guess most people eat breakfast in the morning…This girl generally sleeps until 10:30 or 11, has meds to take before food, and then other meds which are supposed to be taken before the other meds before food…breakfast is lucky to get in by 2or 3pm) and some lack of appetite, about half what they brought me wound up going back wherever un-eaten food goes.  I pressured Colin to try to eat some of it, but he was even more uninterested in most of it than I was.

This brings me to the one thing I mention on a post-stay survey they could have done better:  how meds were handled. 

I’d planned on not bringing much in the way of meds with me to the hospital, just my usual daily plastic pill dispenser, but a few days before surgery I read on a TC group that the hospital will require you bring in every Rx bottle for every med you take.  I’m fine without most my meds for a few days, but being unsure how long I’d be in there, just to be safe, I cleared a bunch of space in my suitcase and brought about a cubic foot of medicine bottles.  (This would ultimately result in the need to ship a tightly packed, large flat rate box back home, which apparently burst open and the post office lost most the contents.  We’re still figuring out which things we’re missing.)

All the bottles were taken from me on admission.  As far as I know, most were locked in a box next to the computer at the foot of my bed, but I think what happened was there were so many they didn’t all fit, so some had to be locked away elsewhere.  (The day after I left, someone called to say they had found a random bottle and we had to drive back to the hospital and meet someone to grab it – no easy feat with traffic patterns around there, in an unfamiliar electric car, and no direct means of reaching said person.)

How my daily meds were handled seemed basically random.  In my pre-admission interview I had listed every single medication I take.  This took some time, but the nurse I was speaking to was very diligent about getting down every detail.  Given this level of scrutiny, I expected some organization on the matter once I arrived.

But that’s where it all seems to fall apart.  No one told me whether I was supposed to bring my own meds, expect the hospital to provide them bring them in original containers, or…?  It seems some prescriptions were put through the hospital’s pharmacy and, when possible, they provided me a supply.  Someone randomly showed up with one of my nose sprays at some point, a low priority med I could easily have gone weeks without.

I take two thyroid meds when I wake.  One of them is doubled on Mondays and Thursdays.  The 2^nd morning a nurse woke me up from a sound sleep – maybe around 6:30? –  to administer one of them.  I was very grumpy.  First, why are you waking me up from a sound sleep to give me a medication I take ON WAKING?  Second, you’re going to wake me up to push pills, and you only have Armour Thyroid – where’s the OTHER thyroid med I take with it, Levothyroixine?  And what day is it?  Do I take one or two?

It seems to me these things could have been relatively straightforward to establish, given the very detailed account the nurse made on my intake interview.  But it also seems like the left hand never speaks with the right.  So the poor nurse, looking puzzled, went away to try get the other med.  This was unsuccessful.  I went back to sleep while I waited.  Then he woke me up again to take the one med he could supply me with.  But I have the bottle I need right there in the box, which I could throw a sock at, near the end of my bed!  Why is this such a hassle?

Next in the morning, I take Cromolyn.  This MCAS (Mast Cell Activation Disorder) med is supposed to be taken at least an hour after eating and a half hour before eating, in order to tamp down the histamine reaction to food in the belly.   I never expected them to get anything that complicated right, but it was never even acknowledged, nor was I given access to my own supply.  In a situation like surgery which can exacerbate MCAS, that might be a priority.

The nurse’s poor timing, I assume, was someone’s clever calculation based on when breakfast arrives.  But I didn’t plan on eating breakfast when it arrived.  I never do.  When I stay at hotels, I’m never awake in time for “breakfast.”  Even if it’s delicious (and hospital food has a way to go to break that barrier) I’m not giving up my desperately needed restorative sleep in order to just, you know, eat.  I feel too rough in the morning for something as complex as digestion, anyway.  If he can, Colin will grab me something to munch on later, but it’s rarely AI Paleo friendly, or worth the trouble. 

So my plan was to let them deliver breakfast, then, if it smelled decent, nosh when I was good and ready.

But this poor guy shows up offering me only a portion of the meds I’m supposed to take before breakfast, at the worst time possible.  Grumpy, middle of REM sleep time. 

Maybe this is how meds are normally handled at hospitals? Just from my perspective, any information about how my daily meds were supposed to be handled beforehand would have been helpful.  

This process, in various iterations, repeated itself with several medications – someone would have to “clear it with the pharmacy,” which took a very long time, sometimes with no “ping” back as to what happened, usually  unsuccessful in procuring the medication I was seeking, sometimes getting it at the wrong time.  Some of my meds are compounded, so odds were that wasn’t happening at a hospital pharmacy, anyhow. 

For the record, I did mention this to the NPs in my post-surgical appointment a week later.

Ah, the schedule:  Dr. Klinge does surgeries on Tuesdays and Wednesdays.  Her follow-up appointments are on Thursdays (and the Thursday right after your surgery isn’t an option.)  So, basically you’re committed to staying in town for at least 8 days to see this surgery through with her office.  We opted to arrive a day early and stay for two weeks total: on the front and to give us time to land, acclimate, adjust for any flight delays, and get groceries; on the back end, for me to heal.

The Three Stairs

I’d heard from other patients that I’d need to successfully mount a small staircase with three stairs before they’d release me from the hospital.  I don’t find the clinical environment to be particularly restful, so I was pretty determined to mount those steps after the first night, and get back to our rental apartment with its cozy bed, and no nurses waking  me up to take vitals and/or feed me medications I don’t need.  I seem to recall an average stay after this surgery is 1-3 days, (more if there are complications.)  So when the P.T.s showed up, over-achiever me was ready to fly this coop! 

Still very high (on pain meds,) but ready to flee.  I should mention that at one point during my stay a nurse took my blood pressure and it was 80 something over 40 something.  This is Niki (and I assume many EDSers and POTsies) on opiates – these powerful meds take already low pressure and send it kinda over the cliff.  Add that to a recent surgery and – oof.  Horizontal is the only way to go.

I’m a little fuzzy on the details, but I think the physical therapists (they came in pairs – to me they seemed like twinzies) came twice.  The first time, perhaps late morning, to teach me how to get safely in and out of bed and make it to the bathroom.  (I’d already made it once there already, being the star student I am.)  The second time they arrived with a walker.  This was my moment! 

They hovered around me like mother hens, Colin looking on from a safe distance.  As an actor, I have plenty experience putting on a show when I’m feeling rough, so this was no biggie.  I was an accomplished do-er.  We walked together out the door, where I got my first glimpse of life outside the hospital room since I’d been wheeled in on my back the evening before.  The nurse’s station was just a few steps down the hall – oh, that’s where all that raucous laughter was coming from all day!  I was doing great.  I hardly felt like I needed the walker at all.  Walking, heh, piece of cake.   I got this. 

I thought we’d head further down the hall, but instead the P.T. Twins led me to an immediate right turn, and then I saw them.  The Stairs.  Three wooden stairs, painted white, standing alone against the left side wall of a small, multi-purpose room.  A sturdy looking handrail ran all the way up the right side and along a platform at the top.  They looked so odd, just – stairs going nowhere.  And suddenly they seemed so – looming. 

In an Alice-In-Wonderland kind of way the stairs got very big and I felt very small.  Everything at the edges of the room started going to black, and I blinked a few times.  I got this.  Take a breath.  Hung my head down a moment to see if that could restore my equanimity.  Up, back down again.  The Twins are starting to look concerned.  I knew that in the worst case, I could pull myself up on that comfortingly solid handrail.

And then one of the Twins is saying, in a very deliberate tone of voice, “Get a chair.  Now.”  I noticed Colin take a step toward me.  Then other twin drags apparently the nearest thing which came to hand, a black, pleather office chair with wheels, right up to behind my butt and I’m being seated in it and hauled back to the room, my head literally between my legs.  Ah, the sting of defeat.

“I’m not going home today, am I?”  I asked the physical therapists.  “No,” one said, half amused, maybe, that I would even ask.  “But I do have a task for you.”  She seated me in the large chair next to my bed.  “Here’s your phone.  Set a timer.  Your job today is to try and sit up in this chair for an hour.  If you feel really lightheaded again, go lie back down in your bed, OK?”

And so I did.  Or tried.  I gave up early, I think after 30 or 45 minutes.  Uprightness was just all too much for me that day.  It was, I had to remind myself, only a day after a major surgery.

And so I stayed a second night in the hospital.  And it wasn’t all bad.  Someone came and gave me wipes so I could feel a little bit clean.  I got to know my roommate, and we have stayed in touch.  The second day, the stairs were immensely less intimidating, and though it took hours after that to get the official go-ahead, I was eventually broken out of the wing of the hospital I’d called home for about 48 hours.

Colin came to get me, and I was sent home with a box of lidocaine patches, sanitary wipes, a gymungous bottle of Miralax and several other things I eventually walked over to a retirement facility near where we were staying; they were grateful for the donation of some medical supplies and we were happy to not have to make room for them in our checked luggage.

Now, let’s see how recovery goes. Whatever happens, I think mantra practice will help!