Peterson Family Update, Oscar Charlie Tango 2343

Things have been hella busy lately, but not necessarily in a bad way.  They are, however, hella busy in a way that I'm only able to take things in pieces at the moment, which means it's a brilliant time to deploy the bulleted list once again!

• Nutritionist meal plan is still going well. My anxiety around meal planning has decreased immensely and my body is adjusting to different macros and their appropriate portion sizes.  Now that the hypervigilance is continuing to recede, I think I actually feel...pretty good.  A few of my data points are moving in a good direction, too.  I also have not eaten out much since I started this, which is good in its own way.  
• Andy and I are still enjoying rock climbing and the last couple of times I have had some really good climbing days, where I felt I had more gas in the tank than I had previously and subsequently was able to complete a couple of routes that I have been projecting.  We have all learned so much since we started in May, and it's neat to see that progress in something tangible, tackling routes that seemed completely impossible just a few months before.  
• With the last Peterson Family Update, I announced that Andy's position had been eliminated from Rivian.  He has been spending a lot of his severance package time traveling, tackling house projects, the aforementioned rock climbing, and otherwise reacquainting with parts of himself.  
  

• Luna is still a delightful fluffbutt.  She hasn't mastered my attempt at covering her eyes as a trick called "Eclipse," but leans on her side and paws up a bit so that you can move them up to her eyes, so that's a start.  
• Work has been tough lately.  Our current patient population has a lot of confused bodies for one reason or another, which means there are places where logic and reasoning don't apply.  I am solidifying some successful boundaries with a few of these instances.  Sometimes calling security is a way to stop things from escalating rather than waiting for them to escalate past a point--arguing with a patient can be more far agitating than calmly following through with putting them physically back in bed, following through on the choices that have been outlined.  I have wasted forty-five minutes attempting to convince people that cannot understand reasoning--there's no need to continue an unproductive conversation to this degree.  I pick my battles differently; I give choices where I can but not at the expense of anyone's safety.  
• Mike has been continuing in his coursework at Heartland.  We've talked about bones and the like a few times, and I'm trying not to get too pedantic in certain spaces.  
• Absolutely loving the fall weather lately--took an excellent trip to Starved Rock with some friends to catch up, see the foliage, and have a lovely walk.  
  

• The new sofa and chairs we had bought before hearing about Andy's job change arrived and we have rearranged our downstairs accordingly--it's neat to have a new perspective and see our space in a different light.  
• Andy is still sorting through what his next steps might be, but in the meanwhile our health insurance is still covered until the end of the calendar year.  Health insurance plans might sound great until we factor in a Tier 6 medication, in which case I focus only on the max out-of-pocket to compare one plan against another.  I have been managing a lot of spreadsheet action regarding health insurance and starting to look at other employers for different plans.  It's a shitty reason to have to leave my current job, but this is about survival and we'll do what we have to do.  It's a raw but real truth.  I will continue to feel unsettled until we both have coverage lined up for January.  
  

We cannot seem to do big life choices one at a time in our household.  I met some delightful folks at Big Brother Carle through the Ostomy Care Associate class I took who happened to mention that their wound clinic was looking for people.  

I got into nursing specifically to be a wound/ostomy nurse—my heart is in ostomy, with the ingrained compassion from my own experience; my brain, however, is intrigued by wound and the different problem-solving that entails.  I submitted for a transfer that will officially start mid-November.  My plan is still to pick up some weekends on MOSU, but otherwise I'll be commuting for a Monday through Friday, 0800-1700.  This way, I can simultaneously further my ultimate professional goals, keep the relationships I have, while also making some additional money to supplement a higher need insurance plan for my situation.  

I'm still very much feeling the season of change ramifications.  And I'm also optimistic toward the new adventures ahead.

Sound and Space

So, the cold fronts moving through as the change of seasons has been a bit of a different kind of wallop on me this year.  Normally I get a bit of a cold when the weather starts turning, just a week or so of sinus drainage and lamenting all of the moments that I had been able to breathe easily through my nose and then it's done.  This year, though, I completely lost my voice.  Just...gone.  I cannot recall a time when I had lost it to this degree.  

And, of course, it all started happening while I was at work.  Or rather, I discovered it after I had arrived at work.  Saturday, I had a sore throat from the drainage, with some pain in swallowing but otherwise no other major issues.  Sunday, though, I got to work and the first time I had spoken that morning, I ended up cracking like Peter Brady.  I hadn't had a reason to say much before leaving the house so that was a moment of "Ah.  Shit."  Over the course of that shift, it proceeded to get worse.  People I spoke with from different departments asking the cursory "how are you?" got a bemused "I sound like Peter Brady!" back from me, as all I could really do was laugh at myself and open up another Ricola from my pocket.  

By the end of that Sunday shift, though, it was no longer a question--two words out of my mouth made it apparent to anyone I was talking to.  Had a couple of patients tell me that I sounded a little hoarse as a bit of an understatement.  But giving report to the oncoming nurses, that was a particular kind of squeaky special.  And then I would laugh at myself which also sounded ridiculous and laugh a little harder.  When I left, I had told the charge nurse I would see how the night went and call off if I needed to, since I was scheduled to work that Monday as well.  

At around ten that night, I began to see reason and called work.  The call went something like this:

Me:  Hey, this is Larissa.

Charge Nurse:  Oh, I can tell.

I started laughing and she joined.  

Charge Nurse:  I'm sorry, it's not funny.

Me:  It is a little funny.  

I explained that I felt it was prudent to call in and recover; she agreed that was probably a wise decision.  *end scene*

So, I slept in the recliner that night, since that felt better than flat with the sinus drainage again.  Andy made me a hot toddy, and I was going to be on vocal rest for the next day.  I think I spoke less than two hundred words that day.  Lots of Throat Coat Tea, honey, water, and a bit of rye whiskey, but little speaking.  To my dog, we have gestures that we do along with commands and she was able to do quite a bit with just the gestures, once she realized that I still had a treat available.  Getting her attention involved whistling and kissing sounds.  

Talking with the other adults in my household, though, that was a bit trickier.  I had to think about my communication differently and how much space I take up regarding sound.  I couldn't have a quippy reply or theorize what might happen next along with the show we were watching together--communication had to be prioritized and triaged to short ideas or not shared at all.  And trying to get an idea across involved some basic signs that I knew, mouthing, and voicing only a few key words for context.  Andy would repeat whatever he was understanding from me, which helped us confirm immediately in the moment and try again as needed.  

I enjoy ruminating on words in a normal day, but this was a different kind of overthinking.  And then I noticed that I was also walking more quietly, paying attention to the sound of my body in my own home a little differently.  I felt quiet in space as well as voice.  It was a unique moment of awareness of how I take up space in a different manner.  

When I'm in a public space and someone is taking a call on speakerphone, I'm annoyed, particularly when there are glares that seem to imply that you shouldn't be listening to their conversation--sound takes up space differently and they decided to have a private conversation, loudly, in line at the mall.  There is a breach of consent here, that a shared space has been taken over by non-typical intrusion.  While hiking at Starved Rock this summer, there were multiple groups that were blasting their own music while walking the trails.  Some held a tighter radius, where we could hear it coming but the sound left with the group; others interrupted the natural sounds for minutes on end, loud enough that even the group had to yell to talk to each other.  Public space intruded.  It wasn't against any rules, but it felt rude, a breach of courtesy.  Coughing, though, as another example also breaches a shared sound space but it seen as more acceptable, understanding that it is usually out of control of the body in question.  But there is still a point where excessive coughing requires different rules--I've slept in the recliner a few nights, now, half for my own comfort and half to ensure I do not disturb Andy more than necessary.  

There are invisible rules for how we take up space, and these boundaries do vary.  It was interesting to think about it for a while, even in my own microcosm of shared space with my housemates.  We have unspoken rules about when music or a podcast can be played.  Tor example, someone cooking the kitchen has priority.  And if someone was in the space first that can also grant priority, but there are consent check-ins, the easy "is it okay if I play X?"  It's also okay for us to request someone to use headphones or turn down the volume.  I won't say that we're perfect at it, but there are some good practices.  

And then there's Luna who borks anytime her great nemesis, the UPS truck, goes by.  Human social norms are clearly not her thing.  

Whelp, in the meanwhile I'm continuing to let this round of seasonal blah make it's way through, coupled with another Covid booster last week, I'm ready for some good days again on the other side.  I'll continue to take up space differently for a little while longer, including extra mugs, Ricola wrappers, and a more coughing.  I'm allowed to take up space; and it's interesting to consider it in a new light.  

About Food

I have a weird relationship with food.  Funnily enough, having an autoimmune disease that affects my digestive system.  Honestly, I would go as far to say that I have disorganized thinking around food.  There are a number of triggers and patterns that have made food a touchy subject for me.  

• I've lost thirty pounds in a month before because it was too painful to eat and I had no appetite--Crohn's flares are a beast
• Trying to force yourself to eat when the back of your mind screams that there will be Terrible Consequences! while simultaneously another part of your mind is screaming that if you don't eat there will be Terrible Consequences!...well, this results in Terrible Consequences! AND anxiety 
• Already experiencing a reduction in much joy of eating, eating something I don't feel I'm in the mood for is not something I can muscle through can be a special kind of nausea
• Back in 2016, I went keto and found that I felt better by sticking to that diet; I also felt very left out of the community aspects around eating
• The past few years, I've been doing a "lazy keto," where I attempt to stay mostly on diet but end up feeling terribly guilty at least twice a week
• Living with two vegetarians made it harder to find recipes that worked for all of us, which increased the emotional energy it took to plan out meals and groceries for the week and also meant that I reverted more to pre-packaged options and less cooking for our household overall

I know that it is unfortunately always a matter of time until my next Crohn's flare--that's what chronic illness do.  I acknowledge this truth at the same time I am relentlessly pouring my efforts into ensuring that this happens in the far-future rather than the near, always working toward a better state of health.  

All this negativity toward food, there is plenty of room for improvement, here.  So I spoke to my GP about a nutritionist.  And I met with said nutritionist.  Now I'm working through unlearning and relearning in some of the same spaces.  

Probably my favorite lunch so far

So far, I think it's going well.  Feeling full on keto compared to feeling full on my individualized meal plan is different--my body was conditioned to feel even the same portion sizes differently, in terms of registering the physical feeling of "full."  I've also had the chance to rediscover foods that I haven't had without significant guilt in a long time.  Homemade apple butter in Greek yogurt?  Hells yeah.  Even the general burden of what should I eat/cook this week is cinched down into seven days that I pick from, already designed and with dinners accessible to my housemates so that we can cook and eat together.  

I'm at the end of week two, now, still fine-tuning the rules and nuances.  At this point, my bodily hypervigilance is going to start to back down a notch or two, which will allow a more gentle introspection into how I am physically feeling on the plan, now that the crisis marker systems checks won't be flashing in background.  The anxiety parts of my brain that try to help protect me by planning through catastrophizing remind me that this could still go terribly wrong, but I have also learned to acknowledge them and work through those spaces only as much as they are productive.  Most interestingly, though, will be the emotional introspection about food in this time.  Eating is always an emotional experience, and I have a lot of negative associations to shake off.  There is space for reclamation, and, better still, there is opportunity for it.  

After a month, we can take a better sampling of change and adjust accordingly.  I get quarterly bloodwork for my Crohn's disease management as it stands, so a request for a couple of add-ons for my own curiosity and to check for progress in other metrics is also easily feasible (A1C to check if I have adjusted in sugar management from keto to a diet that has reintroduced carbs, for example).  I have many, many places that I watch concerning my health, where I can watch trending data, as well as keeping a general impressions subjective log.  

Ya'll--I am high maintenance in some interesting ways.  And I have fought for a long time to get to this degree of "healthy."  There are places where I have accepted a new normal; there are places where the current "normal" has been challenged and improved; and the line is incredibly difficult to discern. Having the emotional and physical energy to poke at it, though, requires a base degree of stability that I have not always had.  My limitations can change daily; the ranges that they can be found in, however, have been steadily increasing, advancing how good a good day can be and minimizing how poor a bad day can be.  It takes a lot of its own energy to manage this.  I'm grateful to simply have enough spoons to be able to investigate or even make an appointment in increments at a time.  I also have the blessing of a diagnosis that I can point to--not everyone managing their own care has this easily, languishing in the "unknowing" space.  There have been times when I had thought things wouldn't get better on a particular front and been right--this was a path, then, of radical self-acceptance and then leaning into how to make accommodations for that need.  There have been things that have improved over a period of years.  That's what it is to live with a disability, slowly sifting out what can be improved and accepting what can't, while simultaneously ignoring a lot of bullshit advice, even when it comes from a well-meaning source.  

So today, it's food.  A fundamental concept that I am deconstructing and re-interpreting into my life as it is now instead of my life as it has been.  And when life parameters change, so will the requirements.  And we will adjust again, with a necessary amount of grumbling.  

Melvin & Me, Part 38: a...Fan?

So, I had a delightful first the other day.  

I was forming a new acquaintance at work.  While we were talking in a relatively calm moment, Melvin made a triumphant BLURB-BLURBLEBLURBLURB under my shirt.  I threw my hand over my side to muffle the sound, as I usually do.  "Ah, sorry, that's just my ostomy," I explained.  

"That's SO COOL!" they nearly shouted.  

And I blinked for a moment.  

They apologized immediately, hoping that they had not embarrassed me or overstepped.  I reassured them with equal urgency, that I was fine, just not the reaction I was used to, even telling her it was not the usual response.  

Normally, when I choose to reveal my ostomy to someone without an ostomy, there are three main reactions:

• Sympathy
• Gentle embarrassment and curiosity
• Total confusion, which after the explanation is then shifted to one of the other two

But this, this was new.  This was...enthusiasm.  There is a lot of brilliant ingenuity in the modern stoma creation process.  There is also a great degree of adaptation and reframing to live with one.  I even had to pause for a moment and think, yeah, I guess I AM pretty cool.  

I'm used to apologies and explaining that, no, really, this terrible burden is something that is very livable and truly gives me my best life.  I did not have to qualify the experience, that "well, yes, it is a burden BUT..." phrase I've said in different words many, many times.  

And then of course there were more questions, and the enthusiasm remained.  I left that moment with beautifully, bemused joy.  It felt pretty good.  I know I am resilient, that I have a degree of natural charisma, but I don't often allow myself to acknowledge that, afraid of sounding full of myself.  And yet, I am a marvel.  It's nice to remember on occasion.  My ostomy is a part of that experience, a part of me.  I am currently living better than I had thought was possible, in some of those darker moments when I had circled the drain.  Time is strange; so is our passage through it.

Another thought crossed my mind later:  it is problematic to reduce someone with a disability to "wow, what an inspiration!"  A person living with a disability is living their life; they don't exist to serve as a example to others on how theirs "could be worse."  However, there is a balance between recognizing the strength of the individual without turning them into a caricature.  In this particular example, I felt seen as a person rather than a person with a disability, which made all the difference.  I felt seen.  And it was nice to have someone else see the benefit without having to introduce caveat after caveat.  

Melvin helps me live my best life.  That can be inspiring; it can also be heavy; it is something that has profoundly shaped my experience.  And it's kinda neat.

Season of Change

I am not wholly certain if this is something that my confirmation bias has reaffirmed again and again or if it is something truly happening.  It's like getting a new car and then suddenly seeing the same car everywhere.  

To everything turn, turn, turn/ There is a season; turn, turn, turn

We are in a season of change.  I know that change is constant, yet there are still periods of time where it seems more turbulent than others.  Where instead of small pockets of change there are major changes, tectonic shifts that shake the ground under our feet in transition to a different elevation.  Both ground and water have to adjust.  

And there are spaces when it seems a community feels the shifting, that multiple bodies are kicked off their own feet for the violence of the shift.  Not all the changes are bad, but they do require a degree of reframing and creating new patterns.  

A time to build up, a time to break down/ A time to dance, a time to mourn/ A time to cast away stones/ A time to gather stones together

New houses, new jobs, losing and gaining family members, new conditions and states of being.  Flux and uncertainty.  Even for those I've spoken with that were not involved in some of the changes directly, they seem to at least be affected by those that are.  

It could still be a "seems like" kind of thing; I feel better to acknowledge the feeling.  To take a moment and pause and acknowledge change as it is and how I am currently experiencing it, there is an odd segment of calm in the midst of the turbulence.  

A time to gain, a time to lose/ A time to rend, a time to sow/ A time for love, a time for hate/ A time for peace, I swear it's not too late

Sometimes we get our sea-legs again, remember how to walk with respect to the waves as the boat floats on.  Other times, we have to find something steady to hold on to for a while longer.  And sometimes, the storm stops as abruptly as it began, leaving folks wary and damp but also steady again.  

We weather the season.  We acknowledge the weight.  We move to the next season.  

Turn.  Turn.  Turn.

Processing in the Pool, Health Insurance Grieving

I went lap swimming the other day to clear my thoughts.  I find I leave the pool a more whole person than when I entered it.  

I had not had the chance to swim for a couple weeks--the hardest part of working out is getting to the gym.  Packing my swim bag, getting in the car, finding a locker, wrestling with my swim cap, and the uncertainty of knowing whether there would be an open lane when I arrived, it felt like too much work when my mind was already overloaded.  

But that first dive in, the shock of the cold water everywhere at once, my mind can only be present where I am, if only for a moment.  And then I could count the lengths, deciding what I wanted to do for my next set.  

Other thoughts meander in and out as I circle back once again and again as I swim the seventy-one lengths to meet my mile.  Occasionally, the count slips and I spend a whole length or two attempting to remember which one I was on, passing the time very effectively as I let my body complete the muscle memory circuit, one hand reaching and then the other, legs independent of all else in continuous motion, breathing timed within the stroke for optimum efficiency.  

When an idea pops up that needs more attention, though, it stays as long as it needs to.  

I have run through many hypothetical situations, how I would have wanted to respond better in a past situation or creating a scenario and playing it out in my mind as a potential future event.  I have also used the space to organize the scattered ideas and emotions of a particular event to make sense of them, to find the words I needed to articulate something murky or clouded by other factors.  

I always leave the pool a more whole person than when I entered it.  

There are a number of concerns that required sifting in this latest swim.  

• A patient and I had had a misunderstanding between us, and I needed to sort out how to let that go, owning my role in the situation without owning her reaction and the guilt that implies.  
• I recently had my first experience calling a family member to tell them their loved one had passed.  I knew that this ten-minute conversation was a pivoting point in their life and felt the gravity of that.
• We are in a season of change:  so many people I know are in a state of flux right now, where there is significant shifting and upheaval and uncertainty.  
• As part of that season, Andy and I are sorting out our plan forward from here, attempting to allow some space for connections to happen organically.  We are also getting a better grounding on what our basic needs are, drawing a fence around where we want to restructure, simplify, and focus.  
• And most importantly, I am investigating different health insurance options.  

Regrettably, I have a lot of experience sorting through my major medication plays out in these arenas.  I would be so happy to be wrong somewhere; being right has been both validating and soul-crushing at the same time.  Yet, I still have to ask questions.  I am grateful that I've mostly been met with persons taking my questions seriously, that I have not been given a "well, just read the plan," with an implied "and stop overreacting."  So far, I am met with sympathy but not solutions--it's too early yet.  

Somewhere around lap twenty, my brain went:  "The US healthcare system is normalized extortion."  I nearly stopped mid-stroke.  If a medication costs ten dollars, I'll pay it; if it costs a thousand dollars, I will find a way to pay it.  Nowhere else in the world do these medications cost the amount we pay here, where we as a collective pay far more for healthcare for poorer outcomes than the rest of the industrialized world (source, source, source, source, all just from a quick search).  On an individual level, we know that we have to plan, that we will find what the maximum out-of-pocket is by March or April.  There are many plans that have a max out-of-pocket amount higher than what can legally be deposited tax-free into an HSA ($7,300 for a family plan), meaning that we cannot even break even.  

Oh, and the bones in our mouths are on a different scale altogether, because mouth-bones are a luxury, I guess.  

So, my heart was engaged in two directions that stretch it, between exercise and grieving.  It is an injustice.  And it is real.  And it is exhausting.  The problem does not go away-- a chronic illness existing within a systemic problem is not a great combination.  Which means that I have talked about this before and will do so again.  The wound cannot close; and this is a wound particularly real to me at the moment.

I take some comfort that I'm doing the right things--I'm investigating in different arenas, to identify our best options and understand them in their entirety before moving forward.  At the same time, I mourn its necessity.  I feel myself reverting back to survival tactics that have gotten me through other crises in my life, which doesn't feel great and mentally puts me in those spaces again.  

There is tension in these processing spaces, knowing the value of creating a space where that is possible but also acknowledging the anxiety of uncomfortable truths and the burden of setting up the ingredients for such a space.  A swinging pendulum of processing and distraction and back again, allowing it to swing freely without forcing it to one slide.  

Flowing with the stroke.  Arms and breaths timed together.  Only able to be present and immersed in the moment.  Everything can wait until the other side of the locker room, if only for now.  

YIPE

I remember watching this dog and Foghorn Leghorn duke it out.  At least once an episode, Foghorn Leghorn would do something to antagonize him and then run away until he was just out of range of the leash, only to hear the dog go from low barking to a high "YIPE!" as all of his momentum is suddenly stopped and he lands flat on his back.  

I've been thinking a lot about that "YIPE!" moment.  Andy and I had been making a great deal of progress on our financial and personal goals, motoring along at a good momentum, and then suddenly I feel a strong, implacable yank across my midsection.  I fell hard on the ground, knocking the residual air from my lungs and stunning my senses.  I'm still on the ground, running a number of system-checks (no bones broken, any bleeding? etc.).  To make matters worse, the tether is around my waist, meaning that I am also checking my ostomy with some urgency, a special system-check that is my own disability and burden.  

And in many ways, this is my tether.  

My health is such a complicating factor in our lives.  When it's going well, I'm allowed to get momentum again, to run freely within its radius until I forget it's there.  And then suddenly the rope snags on a tree branch or I hit the full extent of its length and I'm violently pulled backwards.  I've learned to take a slower pace in some areas, to ensure that when I am yanked back, at least it won't be a devastating thing.  I've learned to place pillows on the ground in certain areas to ease the fall.  

I am never allowed to run at my full potential because the burden and restrictions of my healthcare costs inhibit me from running freely.  Having a chronic illness is not a moral failure.  The way we punish people with chronic illness in this country certainly is.  When we say we are against or "not ready for" Medicare for all, we say that we're okay with certain people dying.  When we support a for-profit system, we say that money is more important than people.  This is not the way it has to be; this is not the way it is in many other places.  More and more those other places are looking very appealing for this fact alone.  

Because accessibility to healthcare is literally about survival to me.  It is life-and-death.  I, somehow, need to get my hands on the medication I take every eight weeks that costs $15K here, without going into irreconcilable debt.  It is an ongoing maintenance medication that keeps me healthy and able to function.  Offerings of covering 80% once a deductible is hit, well, that still means I pay $3K every two months until the max out-of-pocket of somewhere between ten and twenty thousand is reached.  At these crossroads, I am running as fast as I can just to stay in place.  There is no more thriving.  On most other metrics we're doing fine; but this one, this one is a devastating blow.  Technically, I have "access" to it; in practicality, the inflated costs of everything are patently absurd.  

These are the worries that keep me on the ground a little longer, wondering when I'm ready to try running again.  Wondering if padding the entire area is possible and/or cost effective.  Wondering what a safe pace to move forward is.  Wondering if there is a nicer tree with less snags or a more generous line.  Always wondering what we could be if the tether wasn't there.  

I spoke with a friend whose tether was their student debt.  Another whose tether was an ailing family member.  Many of these things come down to money; many of these things are felt in grief.  Sometimes a dream to run freely can only be a dream; other times, well, we need to question what kinds of alternatives had yet to be considered.