Merry Christmas

Whelp, Christmas is on a Tuesday this year, but we'll keep this brief. 

First glasses off public picture!  Merry Christmas from our house to yours.  All the best wishes, whether you are spending Christmas in a chaotic flurry or something quiet at home, whether you are missing someone or welcoming new people.  Loving you from here, my friends.  

Lasers and Such (Upcoming Lasik Surgery)

So, I've decided in the wake of celebrating a year with Melvin, a permanent change to my body, to make two other permanent changes to my body.  One of which was my kickass tattoo.  The second, I'm gearing up for.

Old Memes FTW!

I've been cleared to get Lasik.

Andy and I have been working hard to build up our HSA, since we know that my life circumstances will always require this situation.  We will ALWAYS hit our high deductible.  We will continue to put the max amount into the HSA every year that we can.  With healthcare as it is currently in our country (additional opinions on that here), we will need it.  We've been able to pay for some additional dental work and glasses out of this account as well.  Through some small miracle and a lot of good planning, we have enough in this account to pay for Lasik as well as cover the full deductible for next year.  I'm so pleased and so saddened by this, that I'm grateful we're so prepared and sad that we have to be.

I've had glasses since second grade.  They would get bent and broken from time to time growing up, once lost to a lake, and always something that had to be maintained and worried about.  With my various medical experiences, giving my glasses over to a nurse or tech was that final part where I felt worried and truly vulnerable--the events were really real as soon as I couldn't see anymore.  Similarly, after they flew off in a car accident, I felt much more able to process what I needed to do once we found them again.  Going to a waterpark with my family always meant that we had to register a home base where we might leave our glasses, requiring a lot of walking back and forth.  I tried to get around this sometimes with goggles that had some prescription in them, but even that felt awkward and annoying to have to work around.  Showering with various medical appliances has been tricky at various points, where I couldn't really verify their condition with my glasses sitting by the bathroom sink.  These days, when I have a bag change day and Melvin is exposed in the shower, I can't see whether there's any...activity until it's a little too late to contain it.

Yeah, I think I might miss the look that I've come accustomed to think of as "my face" but there are many things to look forward to.

And of course I'm going to give you my perspective on the process of things.  :)

I started off with a consultation appointment a few months ago, to discuss the generalities, where I voiced my specific concerns with my medical conditions as they were, ensuring that there were no counterindications with my Crohn's history.  Flash-forward to last Friday, where I had a couple hours worth of testing.

First, we measured some components of both eyes in the Lasik center, measuring how light hits my eye and the general topography therein.  We were mapping out how light was processed in my eye.  This was a lot of "We're going to flash a light that I need to you stare at and not blink" for ten seconds at a time.  In fact, most of the day was in that camp.  They did a full eye exam, checking for overall health and verifying my prescription--I still can't see the big E without my glasses, but it's been years since I could.  Checked my eye pressure, checked in three different machines where I held my eye open as lights moved or stayed the same.

And, of course, in order to see elements of my eyes better, they had to dilate them.  When I was informed that this was a particular strong version that they needed to use, that might still show dilation into the next morning, I was even less excited and immediately had to question the wisdom of my original plan to go grocery shopping after the appointment.  I ended up calling Andy and having him read the list to me.  Thank goodness it was so foggy and grey out that day.

Something about those dilated eyes seemed familiar...

As a unique element to this appointment, they also stuck these tiny pieces of paper in the corners of my eyes to measure my tear production.  This was probably the worst five minutes, since I had the corner of these pieces of paper tucked under my eyelid in the outside corner of both eyes, waiting to see how the irritation and general tear production continued down the strip via capillary action.  I was very relieved to have those out.

In considering Lasik, we also needed to measure the thickness of my cornea.  This was nearly identical to the eye pressure test (no puffs of air here, just a pressure outside the eye after some numbing drops) but with a different tool.  This is important to the Lasik process, since based on how thick the cornea is, they might recommend a different way to go about it.  The Lasik process, as I understand it, does not involve a blade anymore, instead using a laser to cut some holes along the cornea, like the perforation on a tear-off part of a document.  This flap, then, is flipped back (by the machine) and the laser goes to work.  I'm told that part takes all of twenty minutes or so per eye.  If the cornea is too thin, then a method called PRK (photoreactive keratectomy) is used to move parts of the cornea so that the laser can do its thing--basically, a solution eats away at the top layer of cells.  On the plus side, definitely no blade and less touching involved, though the recovery is a bit slower, since the body has to regrow that layer afterwards.  I was told it felt like an eyelash stuck in your eye that you cannot get out.

I'm less wigged out by things touching my eye than others I've talked to, so the shorter healing time and less inflammatory response (compared to the body reacting to the dissolved epithelial cells in PRK, particularly with my Crohn's) from the Lasik sounds dandy to me, and my doctor as it happens.

Risk factors include the potential in 0.1% of patients for a corneal scar (which I've done some new reading on and found some [what I think are] cool YouTube videos) and dry eyes.   Dry eyes definitely seems to be the most common negative side effect.  I've looked at some worst case scenarios, too, and we discussed how about 95% of people get 20/20, but it's possible I may need a "touch-up" (my words, not his) in a couple months.  Hell, I'd be fine with readers even if it would just be better than Velma from Scooby-Doo.  

Day is set for Friday the 21st, mid afternoon.  Recovery period, not too bad, but I will be expected to put in eyedrops every fifteen minutes the first three days and then every thirty for the rest of the first month.  And we'll see where things go from there.  I'm hoping for "better," which seems like a feasible goal.  Updates as I have them!  Wish me luck.

Scandinavian Utopia

So, I have been known to say more than once that if something had a Norwegian flag on it, Andy would buy it.  I say this only partially in jest, but I have to acknowledge that Andy and I both see elements of Scandinavia with a particular affection and admiration.  What's not to love?  The landscape is gorgeous; there are many elements of the culture that resonate with our liberal-minded mentalities, specifically universal healthcare (which they have maintained successfully for over sixty years), better gender equality, living wages, and proactive attitudes toward climate change.  And the part that stuck the most was the general feeling of "home" that we felt in Tromsø.

However, there are a few places and resources that work to point at that Scandinavia isn't this magical utopia (as an example, a couple of articles here and here, both from 2015).  I don't necessarily agree with either of these in full (and a few of the "downsides" I feel were more points in favor of the region than the author intended), but there are some important points, hell, there's another book about it that I might need to read to balance out the reading of The Year of Living Danishly.  Yes, taxes are a substantially higher percentage of ones wages, but wages are living wages.  There's a persistent claim that suicides are higher in Finland that I've seen argued both ways.  Scandinavia has also not been immune to the rising xenophobia and the increasing prevalence of far right ideologies.

In other words, I'm aware that there's a "grass is greener" element when we talk about the potentiality of emigration to Norway, that we have this wonderful ideal built up in our minds; simultaneously I'm aware that it's a country like any other, with its own problems.  I haven't ignored things that are inconvenient or unpleasant.  I have tried to be aware of these biases when I find new information and weigh the source as well as the information.

And then I got a letter in the mail the other day from my insurance company.  I had asked for a copy of this letter (though they would have sent it anyway), and I was both relieved and enraged to read it.  A couple weeks ago, I wrote about my great frustration trying to get my medication approved through insurance for a routine re-up.  This was a routine process that through a few factors was not completed in time resulted in my receiving my medicine about a week late.  In the meanwhile, I was feeling easily exhausted, blah, and certainly less cheerful.  This letter is the written declaration that my doctor's office and I received over the phone.

They determined that my medication was "medically necessary."  These individuals that may have absolutely no medical training whatsoever that have an enormous impact on my health have declared that they will pay for another year of my life, provided I don't lose my job or otherwise no longer qualify for coverage.  Oh, and don't forget that last line, that even this letter doesn't guarantee I will get my medicine, even thought it is "medically necessary."  

What the actual fuck.

That is always over my head.  No matter how much I may or may not like my job, I'm acutely aware that me being uninsured for any duration of time could cast us into more debt than we could ever recover from.  And I have to count myself lucky for it.  I still don't know how to really convey the full weight of this that I think about constantly.  It's an impossibly real worry for millions of Americans.  Take for example the recent story, where a woman was denied a heart transplant essentially because she was too poor, directly suggesting that she start a fundraising campaign, a picture of the letter itself is included in that link.  This woman was fortunate enough that the letter went viral and she was able to raise enough to afford surgery.  The majority of GoFundMe campaigns are about paying for medical expenses of some kind, and I think this is an absolute disgrace.

I can hear the comments section that I've seen on these kinds of things already echoing in my head.  "Just get a better job" tends to be a popular rebuttal, but I assure you anyone saying that has little idea of how expensive healthcare can be in this country--what kind of job could I get that would allow me to afford 28K every six weeks or my current 8K every eight weeks?  So, that would mean that I would have to spend 242.66K out of pocket or currently 48K out of pocket, and ONLY for that single medication, no other doctors' visits or ostomy supplies or rent or anything else.  I've stood on this soapbox before and it still comes down to this statement:  the only reason that we accept our healthcare prices is that we collectively seem to think that this is what our healthcare actually costs.  We are way overpaying, when other countries have been paying less for better outcomes for years, decades (I know I've talked about the 28K drug that I received here being only 2.6K [after all exchange fees and taxes] when I was in Scotland, for example).

And then comes in the other common rebuttal:  "Well, yeah, but you have to pay for it with taxes!" as if that somehow clinches the argument.

We've had the conversation a few times over with a number of Scandinavian perspectives, and the consensus was that they were okay paying more in taxes if someone got the care that they needed.  I feel exactly the same way.  Knowing what it's like to suffer with Crohn's I would gladly pay more in taxes if that meant people weren't dying trying to ration their medicine or deciding whether to pay the rent or the doctor that month.  You know what Medicare is?  It's GoFundMe on a broad spectrum, taking small contributions from a number of people to meet the need.  And the additional rebuttal of "why should I have to pay for [insert gender specific care here] when I'm [insert different gender here]?"  Well, most of you are never going to need insulin or cystic fibrosis medicine or the kinds of medicines I've taken, but someone does need these things.  In this system, one cannot say "well, I'm not paying for you, but I expect someone to pay for me."  It's a community, meeting everyone's needs.

Yes, I would gladly be a part of that.  To talk to a friend on a fixed income and know that they would still be able to get all of the medical supplies they need.  To talk to the family that was able to enter their child into a rehabilitation center after an accident without fighting with insurance for three months solid.  To discuss with a friend how they were able to enter their family member into a good hospice program, avoiding working themselves past their emotional and physical energy if they could not care for that individual themselves.  To know that one bad day or one unfavorable diagnosis was not going to land someone in a hell more horrific than the normal psychological fear of their own mortality.  To know that losing a family member to cancer did not mean memorializing them by paying the debt of it for years to come.  To only talk about the fear of the procedure and not the incredible worry of how they could ever afford it.  To see preventative care help someone stop their suffering before it became unbearable.  To encourage someone to go to therapy and know that not being able to afford it was not barrier to them receiving the help and support they needed.  To know that people could turn HSA money back into their own dreams and goals rather than squirrel away a disaster fund.  To no longer have to spend hours on the phone, transferring to six different people, arguing with insurance that my life is worth more than a few thousand dollars.

I would give up a lot for those things, half of my paycheck being a start.  And I promise that I would still save a shit-ton of money as part of it, weighing how much we pay into the system as it is.  Money aside, though, I would gain so much peace of mind that I don't know how I would begin to quantify it.  For this fact alone, the Scandinavian Utopia has a great deal of merit to me.  How free I would feel to know that the anxiety of managing my healthcare had decreased, that I was going to be covered without patently arguing with someone new over the phone every other week.  To schedule my appointments without worrying about repercussions.  To know that I would have the freedom to move to a different job and try anything I wanted to do because I would always have at least this part taken care of, I don't know how to describe in a way that would do it justice what that freedom would do for my heart.

I'm hoping that someday sooner rather than later we pass Universal Healthcare in this country, catch up to the rest of the first world countries, maybe pull our heads out of our collective ass.  Insurance companies and drug companies are going to throw everything that they have against it--they've profited immensely from things that are.  There are small steps here and there, such as a new bill to drastically lower drug prices and prevent them from spiking up absurdly overnight.  Universal Healthcare, Medicare for All, whatever you'd like to call it would certainly see a significant drop in the overhead costs of healthcare--my 8K drug would not still cost 8K--because these procedures and medications never truly cost that much in the first place.

The idea of emigrating to Norway, of finding just this peace is a large portion of what makes the thought so damn appealing.  It's reason enough by itself.  Andy and I have a few more reasons why, but I still would wish this peace on everyone.  To millennials putting up with headaches because they cannot afford to go to the eye doctor to get glasses.  To potential parents looking to have a child and weighing the hospital costs.  To those who have had to fight for members of their family to get into physical therapy and other rehabilitative programs.  To those retirees on a fixed income that cannot afford the medical supplies they need.  I know you all.  I wish you health and calm.  I wish that utopia for all of us.

My Relationship with Painkillers

After feeling at least some degree of pain for a couple of years, I am still adjusting to mostly not being in pain any longer.  There are still some aches and minor annoyances as life continues on with age, but these are still not comparable to what used to be "normal."  When things got to a certain level of bad--and even before they reached that point--it was a weighted decision for me when I should actually take pain medication, whether it was simple Tylenol or something heavier.  

I didn't want to take something unless I needed it, but that point was difficult to define.  This was particularly difficult when trying to sort out when to take the narcotic based pain killers after surgery.  Not only were these of a limited supply, they also had a bevy of unique factors:  for example, I would not be able to drive for 24 hours after taking them, so I had to be certain that I had rides arranged for work or anything else.  Additionally, I don't like how fuzzy my mind gets when I take these.  But, then, there's the not being in pain part; something that brings relief even for a short while is still relief.  And what I tend to long for more than anything in those periods of continuous pain is just a Break.

A "Break" encompasses a lot of things to someone with a chronic condition.  What would it mean to not have to worry about managing symptoms, pain, running constant systems checks, timing medications, organizing appointments, and all the corresponding emotions.  To not have to deal with that for even a short period of time, that sounds unbelievably enticing.  There is a brief moment when taking a narcotic based pain killer can seem like that.  It's not a real Break--just a brief break--but when there's enough of that desperation, I see why someone might turn to them.  And I'll admit there's a part of addiction that makes a lot of sense to me. 

I'm very aware that emotional escape is not a habit I want when considering pain medication--this is one of the chief reasons that I have denied myself in those moments of decision.  I don't want to ever start trying to rely on it.  On some level, too, the latent anger that I have toward parts of my body may be a peripheral part of why I have wrestled with when to take pain medications,that perhaps I felt part of me deserved to suffer, as twisted as that sounds.  There was even a measure of pride in denying myself pain medication, that I was showing I was strong to an invisible audience while also annoyed with myself for thinking that way.  

At some point, I realized that I didn't have to be in pain, though.  That I wasn't weak for recognizing pain nor any stronger for suffering through it.  And that compassion for parts of my body was more satisfying than a level of revenge on it.

I want to emphasize these things:  there's nothing noble in suffering when you don't have to.  There's nothing weak in asking for help.  There's nothing weak in accepting help.

Different cultures have different perspectives on how people should face pain, how people should react.  Whether individuals should suffer in silence, ignore the pain completely, or simply hide everything pertaining to emotion.  It's seen as strength, to a lot of people, to the point where people start to feel guilty or inferiority for feeling human feelings of pain, grief, and many other strong emotions.  

I think I believed that for a long time, that I needed to pretend things didn't really affect me.  Now I believe that vulnerability can be a far greater show of strength than pretending that something isn't happening.  Allowing yourself to be authentic to what you are feeling can be difficult--no one wants to linger on tears and pain longer than they have to or feel that they're dragging other people into those feelings.  But these are the parts that make us human, the struggles that bind us together; what good does it do to ignore these parts of ourselves, pretend that we're happy and unaffected all the time?  By collectively trying to avoid these unpleasantries, it seems we grow less and less capable in dealing with them as a culture.  A lot of people freeze up when they see someone crying, report that they don't know what to say at a funeral, feel uncomfortable seeing people in the hospital, whether because of inexperience or the subconscious understanding that we will have our own turn in time.  

We can be better.  We can be better by acknowledging these truths and meeting people where they are.  If we can do something (safely) to alleviate pain, why don't we do it?  There is a difference between treating or preempting pain and avoiding the situation.  And this applies to medication, too--if I take pain medication because I am in pain that makes sense.  If I wanted to take pain medication because I don't want to deal with pain or don't want to feel it or anything else, that is dangerous territory.  Same goes for larger and emotional pain, that taking measures to help cope with that can be good, but taking measures to avoid it tends to led to unhealthy behaviors, particularly if they are the only strategies used.  Where that gets tricky comes back to that idea of a Break.  A Break can make all other elements seem more bearable, just having that space to breathe, but the allure of staying there can be dangerous.  

I think of all of these things when I feel a twinge in my back and try to decide whether to grab some Tylenol or ibuprofen, even though these are non-narcotic and over-the-counter.  I was in a lot of pain for a long time and was responsible for managing it as healthfully as I could.  I needed the autonomy to make these decisions, identifying and speaking up for these needs while discussing them with my healthcare providers and trying to find the right balance to schedule what my body needed to heal.  It's a heavy weight, but I still needed to be the one to make those decisions.  I deal with the problem, choosing to address pain instead of avoiding it.  Really, I think that is the main difference.  I still weigh that when I think about what my body needs.  

Melvin & Me, Part 17: Skin

**Please note that there are some #nofilter pictures of my stoma below,  Squeamish may wish to skip past some parts today.

Melvin has been kind of quiet on this blog as of late.  As expected, Melvin has become more and more a fact of life and less of a novelty.  Or, more accurately, I am aware of my colostomy, but it's a quieter awareness.  I think about when I need to go to the bathroom to empty out the bag; I plot out when I need to do bag changes to fit my schedule best; I ensure that my supplies are well-stocked and ordered as necessary; and all of these elements are routine.

However, I am immensely grateful that these pieces are so routine.  I have not (knock on wood) had any major leakage in months.  I know that it is an inevitability, that something is bound to fail sometime, but that it is not a frequent thing for me, right now, that gives me a great deal of confidence, that a leak will still momentarily shatter parts of that confidence but that I will bounce back from that cleaner and faster.  It's the most that I could ask for, truly.  From where I was last year, I am in a much better state of health and my mental health has been positively reflecting aspects of that in glimmers.

The reason right now that Melvin is behaving so nicely is in no small part because my skin has been tolerating the situation well.  Three cheers for the integumentary system, the unsung hero of the body!  Yay for skin and hair and nails!  Hurrah for oil and sweat glands!  Sebum number one!

Thumbs up for skin!

...and, yes, I'm aware of the irony of that given that I've just gotten a tattoo recently.

Taking care of the skin around my ostomy site is incredibly important.  I'm relying on this area to stay more or less permanently covered, possibly slightly covered in escaped bits of poo for a few days, if the seal leaks.  If the skin starts to break down in any way, the bandage part of the flange is less inclined to stick, increasing the likelihood of a leak.  More leaks mean more poop against my skin, which causes the skin to deteriorate further in a reinforcing cycle of blah.

When the skin gets to this point, I have a few practices that have in my pocket to help out.

1. Change the bag more frequently--more bag changes mean that I have more opportunities to clean and treat the area, allowing the space to breathe a bit more than usual.  This can be difficult for those that only have so many bag changes available from their insurance company per month; in my case, I have slowly built a back-up supply by stretching changes out when components were going well to prepare for the circumstances as necessary.
2. I have a different kind of flange and adhesive that are gentler--these contain ceramides, which are ingredients in a few brands of gentle soaps (specifically such as Cera Ve).  My skin had responded well to these soaps with my first ostomy experience.  I know that this flange option had not been offered previously--new developments are continually happening in ostomy care!
3. Gentle soaps and consideration when cleaning the site itself--treating the area with warm water and, in my case, either CeraVe soap or Hibiclens soap
4. Let air dry as much as possible--for as long as I dared, I would leave the ostomy open to the air, uncovered and able to breathe.  With no sphincter control, eventually the site will need to perform its function, but the longer I could let the skin absorb a product I had put on it to help heal the skin or otherwise just be uncovered for a bit was a kindness to the affected area.

If the problem persists, then it's time to reach out for some professional help and schedule an appointment with the ostomy nurse.  We may discuss some different interventions, such as using some additional putty adhesive to bolster up a particular side that is leaking or use some additional bolsters on the flange to add some additional pressure around the stoma.  Once Melvin had healed enough, we did end up switching to a more convex flange, so that there was a constant pressure around the ostomy site to help push around it and prevent leaks from underneath it.  

However, the best thing that I recommend for myself is to prevent it from happening in the first place.  Whenever possible, I still use the gentle soaps around my stoma and wash it gently with warm water for each bag change, debriding off any remaining adhesive as necessary.  After drying it off, I apply some stoma powder.  This powder I specifically apply to anywhere that has been oozing or weeping to help dry the area in question at least a little bit.

Dusted around with my preferred powder brand

And remembering that sometimes Melvin

sticks out a bit further on any given day

Then, I open up the small, foam rectangle of the skin protectorate solution and swab that generously over the area under the flange with particular attention to any of those angry spots.  I always ensure to cover well the area immediately around the stoma, since this area is most likely to be affected by leaks.

Powder is still there, under a thin layer of the solution

Between these treatments, my skin has been healthy and happy in this area, all things considered.  The convex flange around my stoma means that I always look a little bruised in that area, but it has been a good solution for me for the long run.

A closer angle of that convex flange

The rest of my skin, I take care of that with a little less caution, but still a good deal of care, since this is my first line of immunological defense (amongst other functions) and I appreciate preventative care.  Taking care of my body means taking care of Melvin.  Taking care of Melvin means taking care of the surrounding areas.  I recognize and appreciate the specific needs that I have, honoring my body's needs as best I can and adjusting as patiently as possible when they change.  It's not easy--I know that there will be leaks and issues that come up--but I am more confident in my ability to adapt to them, even if it involves maybe a little good natured grumbling.  

Low Attendance

We're going a little meta today and talking a bit about the blog itself.

I had a couple of weeks off where I was a bit late in my particular schedule--I didn't miss a day, but I was out of sync.  Between life being a flavor of hectic for not only myself but many other people I've talked to, I have found that my blog views have been down recently.

In case you wanted to know what the stats page looked like

I know it's a little gauche to bring that up--I'm not shaming anyone for not reading consistently or sharing enough or anything of the ilk--but I do watch these things.  Understandably, the blog post about the Relationship Escalator saw the largest response, and I'm so pleased to see that it's not just something that I feel as an invisible pressure while simultaneously feeling so sad that it is a pressure that so many of us feel as many of us try to find our own definition of what it means to be an adult in this day and age.  It was absolutely exciting to watch the views go up.  Normally, I publish the blog and then go to both Facebook to post it on my wall and as an email to those that don't have Facebook or prefer not to check it.  Then, I check back sometime late that afternoon to see where it's at.

I don't rely on these views for my self-esteem, but I won't deny that those numbers can feel good to see.  I will write either way, but it's nice to be assured that there's some kind of audience.  It's an interesting balance to walk, to see what resonates with people but also be authentic to what I need to discuss, to be excited by that engagement but not rely on it.

It was a good moment to reflect on what the blog means to me, in some ways.  There were a few points in watching the numbers recently where I felt maybe I should hang it up and quit the blog.  Essentially, it was on the downswing of the creative process, that point where you're sure that everything you make is crap before finding merit in it again.  Then, I had the opportunity to figure out why I strongly did not want to stop, and here's what I sifted out:

1. I still need something to hold me accountable, to keep me writing
2. This space still serves as a safe place to process through important things
3. I miss writing fiction
4. I've learned so much through keeping this discipline over the two years I've done this
5. I cope with my depression, anxiety, and illness through educating others
6. There are still things left to say

These aren't necessarily new--I'm certain that I've mentioned these individual reasons in places before--though it is nice to have them in one place.  If nothing else, I need to reaffirm these things to myself again to help pull myself out of that particular part of the cycle.  All in all, whether it's a result of these things or just a refractory response from the level of down I've been feeling lately, I haven't been this productive in writing as I have been in the past couple of weeks.  Normally, I have a blog post or two nearly ready by the time Tuesday rolls around, hammering it out for the most part on a Saturday with a little time to touch up on Monday.  I've had a lot hit me recently as things that I wanted to flesh out and discuss, meaning that I had about six that I was working on, four of which were mostly completed.

So, yes, views were down but I was feeling weirdly productive, whether it was a spite reaction or just recognizing that it's a low period in the ebb and flow that just happens.  And that's okay, too.  It's been a good moment to pause, assess, and then get back to work.

Writing Spots

Given a few circumstances, I ended up doing some writing outside of my normal spots and times.  As a human, I like patterns, meaning that I have specific places and behaviors that I've consciously and unconsciously put into my routine.  Even last night at my Zumba class, we were discussing how everyone goes to their spot and how territorial people can be about that spot.  For another example, I've learned that it's best to get out of the house to dedicate writing time.  This doesn't mean that I cannot accomplish much at home, but I know that a change of scenery can do wonders for my focus, since I don't have the odd question from Andy or notice another goal or task that I haven't gotten to yet or, most likely, turning on the TV and getting a little more absorbed in my choice of white noise than anticipated.  My to-do list is still important when I leave the house, but I can't do anything about folding the laundry when I'm sitting in Starbucks instead.  I still multitask--checking bills, confirming coursework is all accounted for, plotting out travel plans--but I can jump back to what I'm doing much more readily.

Anyway, I tend to go to one of two Starbucks for those writing days, favoring one more than the other but keeping the other in reserve if my first choice is too busy for my liking or I want to shake things up a bit while still feeling familiar and comfortable.  At home, I also have a couple of designated places, even though my Surface enables me to go physically about anywhere I want.  It's a training, a discipline, that it's time to switch into this mode, where I focus on words until I have sketched out the words that I need to or am too mentally exhausted to continue.  All in all, my writing times often end up between two to four hours.  That may sound like a lot, but this specifically dedicated time is only once a week, four out of one hundred and sixty-eight hours.  I try to find an hour or two in the week to tidy up posts or pick up where I left off, but this is a mixed bag, not something I can depend on.  

I feel it acutely when I miss this time in the week.  Even if I don't feel that I have words to say when I sit down, honoring that space and practice is still important.  It's a quiet time to reflect with myself.  

As I started with, though, I found myself in some new spots recently.  One of them was an old new spot, specifically the Barnes & Noble Cafe.  I remember studying in this space before, once for the content tests for my teaching certificate.  I had grabbed books on physics, astronomy, and geology, components that I felt shaky on, understanding that these would be part of the exam for high school science content.  There ended up being one question about dark matter than I know I answered correctly because of that study time.  Two different days I sat at one of the larger tables reading, reading, reading, glancing up to people-watch briefly, and back to reading.  The best strategy that I find for myself is rotate, plan out shifts in subject matter rather than forcing something to finish as I'm losing interest and focus.  I remember feeling overwhelmed, not sure how to really study for so much material, but determined to refresh myself on rusty elements all the same.  I've also been here before with a few different sets of people and had meaningful conversations here.  I can also recall a particular conversation or two that I had with a friend here--the last conversation I had with her included calling me naive for thinking that everyone deserved to have healthcare.  I have had many hypothetical conversations with this person since, but not any real ones, unfortunately.  

But those are the feelings that I associate with this space, now that I'm here writing in it.  On the one hand, this clearly has drummed up some associations worth exploring.  On the other, am I receiving the full benefit of my writing time by dwelling on them?  The question, though, that sticks out to me though is are my favorite spaces more effective because of the associations I have built in those areas or because of the discipline itself?  Maybe it doesn't matter in terms of effect, but it is a fun psychological question and otherwise could be important in how I frame my future writing times.  

I think that this other space in the cafe works for me because I still connect it with focus of some kind.  The discomfort aspect can also work in my favor in that it is good to be uncomfortable sometimes--this is where we grow, where we need to decide whether we want to stretch, abandon, or hold firm to our biases.  

Further study is needed.  I know that I need wireless access, a place that I can stay uninterrupted (relatively) for a few hours, and some kind of table that I can use my Surface on.  This opens up for more options than I would initially assume.  Coffee shops have just been a good default, but this has certainly led to a significant increase in my Starbucks consumption.  Other suggestions for some different places would not be unappreciated.  I'm curious to see what ideas and concepts might stem from new environments.

Christmas Adventure!

Well, it's that time of year again for the Baby Fold's Festival of Trees!  This year, we brought an additional element of fun, a tiny, stuffed unicorn known as Candy Cane--C. Cane for short.  Because, why not?  It's a Christmas themed unicorn, no less, so imagine a stuffed animal that loves snow even more than Andy does.

Well, first, we had to walk through the magical Christmas tunnel.

Magic Tunnels!  He was very excited.

And then we got something to eat and listened to some Christmas music, wrapped into a number of conversations as we ran into a good handful of familiar faces. It was Avanti's Night, so we listened to or tried to talk over some Christmas music while we ate.

Yay Christmas Carols!  He was very excited.

And then on to the decorated trees, wreaths, place settings, and more.

"Is he okay?"

This tree shared his name!  He was VERY excited.

Santa's sleigh made out of gingerbread?!

And he was very excited.

All kinds of talented people had put together some lovely trees, some weird trees, some charming trees, and a few things in between.

It's so tall and pepperminty!  He was very excited.

All in all, we had a wonderful time, taking in some holiday cheer.

My First Tattoo, Process and Reveal

Well, folks, we did it!  Mamma P, Andy, and I had lunch at the Golden Dragon, and then Mamma P and I wandered next door for our tattoo appointments.

Pre-Tattoo selfie

Mamma P came in with an exact idea and was done before the template was set to my skin, since Chad went to draw the idea out.  This meant that I had plenty of time to observe what was to come before it was my turn and to wander around the shop.

First off, the Illinois Tattoo Co has so many different things to look at around the room, not to mention the books and books of their past work.  I could see the smoke from the incense when I looked back to the main window.  And then to look at their stations, there was a lot to look at but for different reasons.  There was a sharps box on the wall and a container of nitrile gloves (latex gloves without the latex).  Each station had various chairs or what I'll call "resting options" for the various positions people might be in for an hour or so.  In addition every station had their own quirkiness of the items that decorated it (including Darth Vader in some oversized Air Jordans) and a container of their various colored inks.

I watched Walter set up his station for Mamma P, checking the placement of where the tattoo would go with her standing, to gauge how things would lay naturally, setting the template and resetting it as much as necessary to see things lining up just right.  A sharpie for the general idea, a template for the actual path.  The template turns purple with your body heat, supplying the outline off of what the artist has intended, to help keep spacings and lettering consistent and even.  Check, recheck, all parties agree, and then it's time to get comfortable.

I was really glad to have watched the process before it was my turn, since I couldn't see anything that was happening behind me.  Tiny cups of ink are laid out, depending on the relevant colors.  The machine itself is set up and tested, with different RPMs and setups for specific purposes.  The affected skin is wiped down with alcohol and shaved (unless it's like an inner lip tattoo, I assume) so that even the vellus hair is out of the way.  Another wipe down or two to keep the area clean.  Then, it's foot to the pedal and holding your breath--pedal for the artist; holding breath for me.

Mamma P's came out lovely!

Evidently the liner moves at a slower RPM and has less needles.  This part was the worst of it, in my estimation.  Mamma P's report was that it wasn't that bad, except for a few places that stung a bit, such as right where the tendon juts up.  I was curious to see how this pain would compare to other pain that I've felt in my life, whether it wouldn't be as bad by comparison or where it would put my brain as part of that.  It felt like a stinging burn, most reminiscent to me of when you get an IV that isn't in correctly, and the saline push ends up flooding under the skin, a very particular sharp sting.  I could feel my body tensing immediately, and I had to remind myself to keep breathing, making exaggerated breaths to help me find a pattern again.  As expected, some areas hurt more than others.  But it was in bursts.  He frequently repositioned his hand and my skin in some different ways, which meant that I could recover briefly, but with the understanding that he would stop if/when I needed a break--I took him up on this twice in the two hours.

Still, though, about two minutes in I definitely had the thought of "what have I done?"  My body wanted to leave but was also frozen in place.  That was a flavor of familiar that did not sit well.  So, to recap, it stung, I couldn't see what was happening, and it was putting me back in my trauma space--that was a lot to take in.  It started to get better as some of the adrenaline started wear down, where I could feel myself trembling but still calmer, making faces when certain parts were particularly uncomfortable but otherwise handling it fine.  Once we got into the shading part (faster RPM, more needles at once), the process didn't seem to hurt nearly as much, though still stinging.

Here was the key difference--I have endured pain out of choice because that is what I needed to do to get better.  It was ugly but healthy; a hard decision but a necessary one.  This kind of pain was different.  I made a choice to sit in a chair for two hours and have needles pierce down to my dermis not because it was the lesser of two evils.  I had the autonomy to choose for my own body for something that I wanted to.  It was cathartic, choosing pain in order to make something beautiful.  And the message is also another expression of radical self-acceptance.  

Anyway, without further ado, here it is!

The redness should go away eventually
Also, I opted against putting my in-progress pictures up
Because they showed more butt crack than I wanted to display today

You know when you're going through a store that has appliances and whatever else and they have a placard up about how the floor model is there to show the look but not the function?  Well, I'm having a sense of humor about my body, that since my colostomy there are parts that don't work "normally."  The text of "For Display Use Only" pokes fun at that and myself, recognizing the reality of the situation without wallowing in it.  That text is encased in something unique and beautiful.  I want to think of myself that way, that I have some things that can be seen as broken and nonfunctional, but speak some of those elements through a particular perspective and humor, that it can become something beautiful and unique.

So, long story short, I'm pleased as anything with my new tattoo.  The couple of days after, it felt like a bad sunburn--sensitive to pressure and heat--but this was at least a kind of familiar pain in that sense.  The skin is a little raised still around those fresh lines and warm to the touch, but I'm tending to it as instructed:  keeping it clean and moisturized with some very gentle soaps and products.  Specifically, I was instructed to "treat it like an open wound," which caused a few sarcastic remarks to ping off in my head, considering I have a vast experience with treating open wounds on myself, but none of these were helpful.  I'm comparing it to wearing a favorite outfit or my Gryffindor panties on days when I want a little extra courage to myself, like I have a small, secret boost of power.  

Chad did a fantastic job taking the idea and adding the beautiful detail and shading in his own style.  I had a great experience and left with a wonderful piece of art that I can carry with me.

Meds Day

Every eight weeks I go to my doctor's office, get set up with an IV, and receive a dose of my medication.  This is one I've mentioned before, the one that's eight grand a dose (noting that the eight grand does not include any of the IV materials, such as needles, saline, and tape, in my doctor's office).  I've been on other medications with similar schedules, and typically when it's time for a new dose some of my symptoms pick up a bit.  Right now, this includes some additional caution in what I eat since I'm a little extra sensitive to food, meaning that I'm more prone to stomach upset, nausea, and pain/burning feeling, so overall I feel more anxious on the whole, wanting to protect myself.  This translates to no alcohol, little cellulose or other fibrous foods, lower acidity, lots of water, and nothing that is "iffy" in how my body has reacted to it before.  My skin tends to freak out a bit, meaning that I have a few breakouts, and it tends to feel dry and cracked more easily.  But most noticeably, I feel my energy waning, like in bed by eight-thirty kind of tired.

Some are worse than others, as far as how I feel when we get to the low end of that last week of medication.  There are some weeks where I don't even realize until I check my phone and notice that it's on my calendar, where I thought I was feeling tired maybe because it was a long week.  I have a blocker on my schedule so that I can take a "creative lunch hour," where I take my hour for lunch plus about forty-five minutes to get the infusion.  The nurse starts my IV, mixes my medicine in the sealed bottle, and then adds it to a bag of saline.  Once that bag is hooked up and plugged in, it takes about half an hour to run it through completely and then I'm good to go for another eight weeks, having attended to my scheduled maintenance.

I give myself permission to feel crappy on these days.  It's a pain to disrupt my week to drive over to my doctor's office, patiently allow someone to put a needle in my hand, then sit there for about an hour, drive back to work, drive back across town, and then try to get back to my work day.  So I grant myself some kind of a treat, whether it's coffee or whathaveyou, and show a little extra compassion to my body those days.  In a way, recognizing my meds days is a way to also schedule some compassion for myself, pausing from my normal week to listen to my body and treat it with kindness.  It's nice to give myself the freedom to feel blah, where I can say "it's a meds day" and have the weight of that understood.

...Only that didn't happen this month like it was supposed to.  Every year I have to get a predetermination (which is very different from a prior authorization, apparently) on file for my doctor's office, that they don't want to give me my eight thousand dollar medication without some assurance from my insurance that they're going to cover it.  On the one hand, I appreciate that because I don't want to be on the hook for a collective 48K worth of medicine for the year.  On the other hand, they literally have the medicine in a cabinet and could give it to me, which is frustrating when it's right there.  

The re-applying is not a surprise--my doctor's office handles these every day for their Crohn's and Ulcerative Colitis patients. Last week, though, I had a couple of voicemails from my nurses the day before my medication appointment, hemming and hawing about troubles with the insurance company.  So, I called my insurance, too, and half an hour later I knew exactly what parts of paperwork they were missing and called my doctor's office back.  

I know how to talk to my insurance company, to get the answers I need and move them to the next body.  I'm able to do that to help myself.  I'm pleased to have these skills and simultaneously furious that I had to do it, that I was making these calls the day that I was supposed to be getting my medication.  In fact, when my insurance contacts asked when I was due for my next infusion and when I told them "today" they were surprised and explained how I could get expedited predetermination, because I bothered to ask if there was such a thing, and these were the same names that my doctor's office told me they were working with.  The people at my doctor's office, I think, are new to this role, even made sure to tell me that the insurance company people were rude to them when they were calling on my behalf.  I did not care if they had a bad experience--I wanted to know that I was going to get the paperwork in to get my meds.  If I could steal a stack of coversheets and have it look like it was coming from an "official" fax number, I'd get a copy of my medical records and take care of it myself.  I'm angry at my doctor's office for not starting this paperwork soon enough.  I'm angry at my insurance company for the red tape.  I schedule out my appointments several months in advance, so this upcoming infusion was not a surprise.  I just wanted my damn medication.

The medication that keeps me out of the hospital.  The medication that keeps me working so that I can qualify for the insurance to pay for the stuff.  The medication that keeps me from feeling like shit.  It's incredibly disheartening to hear your insurance company explain that they're trying to sort out, and I quote, "whether the medication is medically necessary."  Medically necessary.  I'm talking to people that have little to no medical training that get to decide whether or not they're going to pay for the medication that keeps me healthy and alive, because they have a checklist for some specific pieces paper with boxes and signatures in the right places.  And if it gets denied for some reason, it goes to a review board which also are not required to have any medical training and see a small snippet of my medical history to decide whether or not I get to be healthy.  If you think I'm being dramatic, here's a recent example.  It's degrading to have to beg to get the care I need.

I know what can happen when I don't get my medicine, and it feels like you're slowly wasting away as the medicine wears off.  I feel my energy draining.  Every time I eat something, I feel a low, particular burning in my stomach that is the wrong kind of familiar.  I feel constantly nauseous.  Emotionally, I'm three kinds of messed up.  Not only am I back in my trauma space, but I'm, appropriately, mad as hell.

I know what steps I need to take care of next, what calls I need to make.  I'm pretty confident that I'll be predetermined soon, if only because I dragged everyone through--no one is going to have the same urgency about the matter that I do.  And I absolutely will be calling both parties next year, about a month before this predetermination is supposed to hit again.

But there's nothing I could do for it over the weekend.  Hopefully, I'll get my medication on Wednesday, only a week late.  Time to cuddle a unicorn, sulk, and just get through.