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.

Peterson Family Update? Peterson Family Update.

I blinked and July was gone?  Seriously, what happened?  

A lot.  A lot happened, actually.  Let's talk about that.

• I am at my one-year mark of being a nurse.  A full year.  Holy crow.  I have learned SO much and experienced so many things, and yet I'm very much aware of how much I have to learn.  I feel like I am part of the team, that I have a sense of belonging and purpose to go with my title.  I also know what a "good" day and a "bad" day feel like, meaning I have a stronger basis for comparison to start forming my own opinions and ideas on improvement in my flow and the unit's flow in general.  One pattern I've established in the last month is to get at least two patient assessments charted before starting morning med pass, meaning that I'm holding less information in my brain when all of the momentum of the morning really takes off--knowing that at least I have accomplished that one thing makes me feel better about those moments where my time is dictated for me.  It's been a small but important change, helping me find a better rhythm getting into the day.  
• Luna already knows "do a barrel roll" for roll over, "revolution" for spinning in a circle, and "spot" meaning come to a certain area and lay down, in addition to more common commands like sit, come, and shake.  We're working on a new one now:  "eclipse."  This involves Luna covering her eyes with her paws.  As with many things, she can be pretty smart when there is food involved, yet she is still in the beginning stages of trying to suss out what behavior she needs to do specifically to get the food.  
• I am part of class through work that has some additional ostomy information, that upon passing I would have the Ostomy Care Associate certification.  Some of their tips are "well, duh!" to me from my lived experience, but there have been a lot of important things that I've picked up, now to make it absolutely worth my time.  I tend to be happiest when I'm learning something new.
• I got to go to Family Camp for a chunk of it this year, for the first time in a while on Lake Geneva.  I hit some of the favorite highlights:  Pop and I went sailing on the catamaran, I played pinochle, we went on a lakeside walk to get ice cream, and otherwise I was able to catch up with folks a wee bit.  It's neat to re-meet family as a different person, sharing the ways that I have grown and meeting them as they are now, too, rather than my memory of them.  I was interested to see what Family Camp would mean to me now as an adult compared to staying in my swimsuit all day while playing games and swimming and sailing with my cousins growing up.  
• One cousin pointed out that I haven't been to camp much since I got married; I countered that this was a coincidence of timing but not inaccurate, because I had significant health issues that started ten days after Andy and I were married.  Ten years since that summer, circling the drain and back again, with all of the healing and adjusting that entailed.  Strange to think about, how my life permanently changed in many ways that year.  
• Mike has been preparing to start a new education journey at Heartland, starting some courses toward radiology.  I've taken some of the same courses at Heartland as prerequisites for nursing school, probably still have my notes somewhere.  Looking forward to talking shop with him and his new adventures!
• Mike also has a kick-ass new tattoo.  
• I bought a new phone case.  Andy says it looks like it came from Claire's.  There is a lot of floating glitter and pretty colors, along with plastic rhinestones.  It makes me happy.
• Our household has been very much enjoying rock climbing at Upper Limits.  We've been going there a couple of months, now, and it has been so encouraging to see actual, tangible progress. Mike enjoys more of the bouldering aspect while Andy and I have focused more on top rope.  Things we stared at and went "yeah, that's impossible," we're starting to try.  There have been many bumps and colorful bruises along with this, including a notable smash that broke the screen of my FitBit because, of course, I managed to hit it just so.  It's physical and puzzle-solving and requires effective communication with your partner.  
• We like rock climbing enough to take a mini-vacation to St. Louis, where the sister-gyms of our Upper Limits are.  Honestly, though, Andy and I don't recall the last time we took a vacation that wasn't completely packed with plans or focused on a particular event.  It's just a couple of nights, but it's been nice to just take some time for ourselves.  Three rock climbing gyms in two days, though, means my arms and back have some rather loud opinions.

But now, the Big Update:   

As I was preparing to leave Family Camp, I saw that I had missed a call from Andy.  I called him back and let him know that I was going to be heading out shortly, but he had news for me.  Rivian had announced that they would be cutting their staff by 6%:  Andy had just been told that he would be part of that, that his position had been eliminated.  

I may have sped a little more on my way home than I would have normally.  I also may have been trying to hold back my own tears, because that does make for difficult driving.  There is grief.  There is panic.  There is a degree of anger.  There is more grief.  We still have positive feelings toward the company as a whole, but, oof, it's hard not be hurt by that.  

All of our insurance has been through Andy's job.  And some of you may recall from a previous post that I am rather expensive to keep alive, that there are many, many absurd problems in our current healthcare system that would readily see me out to dry.  So, yes, part of my processing in this already difficult process was some sympathetic nervous system activation from good ol' PTSD.  I do not feel safe; I am on constant alert; it is exhausting.  

The only reason I'm a degree of okay right now is that we have some continuing coverage as part of the severance plan.  We have a few months to figure things out.  I'm insistent that Andy take at least a month to reevaluate what he wants from here.  Then we can start running the numbers and see what we actually need, dig into the research to find a solution.  There will be many, many spreadsheets involved.  Both grief and knowledge that we'll find our next right steps exist in the same space.  

Pressure Balance in the Reservoir

I think of my emotional mind like a reservoir.  The image in my mind is clear and polished, seeing both the surface of the created lake and then scaling out to a cross-section vertical image, to gauge the depth and health of the area below the surface. 

There are streams that feed into the reservoir.  There are a couple of gates that allow water to leave and natural spillovers at certain areas.  Too much water in the reservoir is too much pressure, where I feel overwhelmed and experience a great deal of executive dysfunction, tears, and collapse.  The dam and gate system require certain attention:  quality construction and foundation take time. 

There are many ways that I can care for the health of the reservoir.  There is always water in the system, as there is always something to react to, to dwell on again.  Rain feeds water into the system directly—these are stresses that cannot be avoided, that exist from living or cultural influences.  New streams or existing streams can add too much to the system—these are stresses that I do have some control of, that I can investigate and either divert elsewhere or at least reduce the degree of flow.  When the reservoir is full because of rain or stream intake, there are gates that I can use to help reduce the overall pressure in the system—these can be coping mechanisms like routine therapy, resting, exercising, having a good cry, spending time with friends, or a number of other things.  Not all gates are equal, but all gates reduce the pressure to some extent. 

It is imperative to continue to explore the reservoir.  Sometimes, I find gates that are rusty, that could be better help to the system particularly when there is excess rain.  Sometimes, I need to streamline which gates I am using and close others or allow one to close for maintenance if something is blocking that path currently.  Other times I have to venture upstream to understand why a particular source has increased its flow, see if it can be diverted, lessened, or at least understand the need for temporary increase to better make adjustments—in the literal sense, this looks like asking for help, establishing whether I can safely give the concern to another body, find other solutions to reduce the pain of the flow, or rebalance with coping strategies.  I also have to consider the walls of the reservoir:  more than once, I have uncovered a weakened space that was a source of tainted groundwater.  In other words, a past trauma that was hitherto unrecognized with regards to its degree of injury and compounded hurt is now a part of the reservoir system, bleeding stagnated and purulent water into the system.  This can take time and patience to flush out--gumming up some of the gates in the process--as well as some painful excavating.  The system will ultimately be more healthy and possibly even widen the reservoir’s capacity, but it does effect the ecosystem for some time, still leeching elements into the lake until it is diluted enough to become part of it.  Maybe it permanently changes the chemistry; maybe it doesn’t. 

I had felt recently (link to antidepressant blog post) that there had been a difficult combination in my reservoir:  too much rain, heavy stream intake, and some failing gates.  As a result, the water was overflowing and also static.  I felt the pressure and only the pressure, water slopping over some spillways occasionally, but not enough to see the system functioning well again.  The surrounding trees and wildlife were also suffering.  It was all too much.  The worst case scenario would be complete destruction of the gates and damming system, causing a catastrophic flood into the surrounding areas:  a complete mental breakdown.  I will not say that I was at a point where I saw leaks, but I feared cracks enough to continue to care for the system. 

I think Zoloft is helping.  It’s not helping in the way I expected, though.  I had thought that an antidepressant would increase the size of the reservoir, that my capacity for holding things might be increased.  What it seems to be doing instead is working a new pump.  The water is moving in the system now, moving toward the gates and otherwise not allowed to stagnate.  It did not stop the rain; it did not stop the streams; I still felt these things.  But I also did not stay in them indefinitely.  The water is moving, and so the pressure does not build up to impossible levels.  The stress on the system (which is literally representing stress) is reduced.  The ecosystem remains.