Mandatory Christmas Letter, 2018

And it seems that somehow--somehow--we have all made it through 2017. As of writing this, we are still alive and the world has, in fact, not ended; I cannot account for what may have happened in the meanwhile.  

As such, it so follows that we must reflect in the Peterson Christmas Letter, recapping the complexity of a year into a few, fine bullet points.  

• Andy and I are still working at Skyward.  Since around March or so, we've both been very involved in our new product coming out, which has led to all kinds of growing pains, shifting our comfort in one side to the unexplored territory of the new.  We've been vocal about places where we need to smooth the edges, and we have both been entrenched long enough now to start to see different elements enacted.  Andy has also been promoted as of January 1st to Senior Consultant--well-deserved and hard earned!
• February was the long-anticipated Norway trip!  I'm very proud of us for planning out the trip in such a way that we were still underbudget and not by putting it on a credit card.  Yay adulting!  The trip itself was a fantastic adventure, and Andy and I would certainly love to go back.  Dog sledding, Northern Lights, new foods, time together, and all kinds of good stories.  
• In March, we moved to our new place off of Ekstam Dr.  We have some lovely neighbors and furthermore have settled very comfortably into a great, new space.  It's still about six minutes from work (so we still come home for lunch).  While it was a whirlwind sorting it all out while also re-acclimating to life immediately after the trip, it was a very positive move for us.  Additionally, we started a tradition of an unpacking party rather than a big moving day, which I think everyone's backs appreciated, particularly with the free piano we acquired.
• In April, we paid off our car.  A great victory for any Millennial or actually anyone for that matter.
• We started playing Dungeons and Dragons with a few buddies online.  Andy has very much enjoyed leading the group, even if it is like herding cats sometimes.  
• As the year progressed, it was apparent that my standard of health simply wasn't at a "good enough" level.  While elements were still certainly better than they had been, our level for "good" was so skewed that it took some serious reevaluating time and a couple of sick days to at least solidify in my head that we would end up back at Mayos, one way or another.  This reshuffling meant that I missed out on Choir School this year (but thankfully Andy could still go), and did go see a couple of doctors up in Minnesota.  We made some decisions after our discussions there.
• Once we were decided, that we had exhausted all other options and wanted to pursue an ostomy on our time schedule rather than end up in an emergency situation, we spent a few months preparing.  We saved money, we bought supplies, we rearranged parts of the house and similar projects we had been putting off, we gathered our wonderful support together, and I felt, at least, that this period of time moved both slowly and quickly in the same breath.  We took this all with as much grace and humor as we could muster (and a few tears as necessary).  
• And then came the surgery itself.  This all went better than expected.  I am collectively missing about two feet of colon, and I now have a permanent colostomy that I affectionately refer to as Melvin.  Then we transition directly to recovery, which also has a habit of moving slow and fast simultaneously.  
• At the five and a half week mark, I went back to work.  So far, so good.  Frankly, I'm glad to have a set schedule again.  With a real potential for remission much more attainable than it had been before and overall lesser degree of pain, there are a few things to hope for in the coming year.

We are heading into the new year with optimism yet again, because it is our way.  Andy looks at the world as it could be, and I find projects and places to invest my energy into that keep me encouraged.  Andy and I want this to be a year toward better health for us, making strides for our physical health, of course, but also mental, emotional, spiritual, and, hell, financial as well.  I'll be trying to get back into my diet more rigorously after the holidays, but otherwise I am most interested to see how life with Melvin is going to develop over the course of this, our first permanent year together.  There will be many moments and thoughts to catalog through this process.  I've still been conditioned to concern and a flavor of paranoia, that it's hard to simply stop and feel grateful, without a lot of conscious effort, anyway.  I think that will come in time, too, when we wrap up the final pieces up from this surgery and get past the window for any possible complications.  In the meanwhile, we'll pay off Andy's student loans by the end of this new year (barring unforeseen disasters); so wonderful to feel like we're making some kind of progress, even if it is slow.  I'm hoping we'll also be able to start planning out our next big adventure, when and where it might be (at this point, still likely to be Scandinavia). 


We've made some new friends this year, we've helped a few move, we've rekindled a few relationships, and we've lost a few people.  Politics is a new flavor of messy that we don't care for, but we will continue to take these new opportunities to be vocal in our support of positive changes.  We have especially been reminded this year how loved we are by all of you, through your prayers and gifts and time while we were sorting out surgery and all else.  As we have been blessed, we hope to continue to be a blessing to others.  

Wishing you all a wonderful 2018, from our family to yours.

Melvin and Me, Part 1: Day to Day Basics of Living with an Ostomy

Morning.

Apart from the usual alarm clock or general discomfort of a full bladder, every morning also has the sound of crinkling plastic.  As soon as I start moving around, my body wakes up enough that Melvin starts to stir with a couple of morning farts, sounding like air escaping out of a balloon, sometimes; this causes some additional crinkling sound.  

Let's say it's a bag change day.  It's a good idea to get this going before breakfast, trying to decrease the likelihood of extra pooping while I'm taking care of business.

I've got all of my supplies laid out, having pulled everything together in a bin and now laying it out on the counter:  the bag itself, the part that sticks to my skin directly (waiting to be cut to the right size), powder for any oozy skin, skin protectorant, adhesive putty, a mirror to get a better angle of how components are fitting, and a trash bag to place the old appliance in.  The teal bin has a few other pieces, including a liquid deodorant (that works a little bit) and a measuring utensil, to help inform whether I need to cut the appliance to a different size.  

First, I have to pull the old appliance off, gently peeling the adhesive from my skin and exposing the bright pink swatch of large intestine.  I'll grab either some toilet paper or a couple of tissues to wipe away the excess poop from the site and put that in the bag as well.  Then, it's time to check the skin around the site, what will ultimately be covered up again to make sure that no part of said skin is breaking down at all.  If the skin is oozing or unhealthy, this could lead to trouble with the adhesive sticking which could then lead to leakage (or a full "blow-out," as I call it) and then ultimately more issues for my skin, including infection.  Any place that looks a little angry I hit first with the stoma powder, brushing off any excess, to help dry it out.  Then, I'll wipe everything down with a no-sting (a.k.a. alcohol free) swab that puts a thin layer on the top of my skin to help protect it.  I'm quite pleased at how much of a difference this can make.  

Then, my favorite part:  I get to shower without an appliance.  Our showerhead pulls off and I will wash this site directly first, but then I get to shower without worry.  I think everyone at some point has noticed streams of water pouring down from an elbow and redirected the flow down their fingertips, possibly in a game to see how long they could create a continuous trickle or make it stronger or whatever else.  On non-bag change days, I play an advanced version of this game:  position the body in such a way that water is directed away from the bag.  Now, the appliance can absolutely get wet--swimming, showering, whatever isn't an issue--but I have a fear that if it gets too wet that the adhesive might not stick as well, given some bag issues I had had in the past with my old site.  And aside from that fear, keeping a wet something against my skin underneath my clothes for a few hours as it slowly, slowly dries out is uncomfortable.  Andy came up with the brilliant idea of spraying the bag with some ScotchGuard each time (there is a layer of a fabric-type surface under the bag, so it's not just plastic against the body directly), and I think this does help though it cannot work absolutely.  So, yes, a shower where I can turn and face any direction without worrying about it is quite nice.  

After the shower, I dry off--carefully pat dry around the ostomy site--and then I go to my station.  I cut the appliance to size.  In time, I might be able to get some that are pre-cut to my size, but the ostomy site is still healing and therefore changing.  Then, I work on manipulating the putty around into a ring that fits around my site, using my best playdoh-snake-making skills.  I've taken to applying this ring directly around the stoma.  Then, I'll peel that backing off of the appliance and lay that gently on my abdomen.  Once that is securely placed, I will clip the bag to that.  

For the next few minutes, I get ready one-handed as I keep the other over the new bag site, using the warmth of my body to help the adhesive stick.  

And, ta-dah!, we have a fresh bag.  If you notice any blue in the bottom of the bag, that's a squirt of the deodorant fluid in there.  Change completed, it's time to get on with the rest of the day.  I will need a new one every three to five days, or so, assuming that there are no leaks in the meanwhile.  Everything else is pretty familiar:  drying hair, putting on clothes, makeup, accessories, and then down to breakfast.  At this point in my recovery, I'm not keen on bending over more than I have to because I'm very aware of the appliance in that moment and it can be uncomfortable; this will feel normal in time. 

Currently, there's a three-month supply pile of my different ostomy parts on the floor in the bathroom, also in need of finding a forever home, but there's something about that which feels more final to me, that knowing I will have a permanent place to put bags and adhesive putty and all else away means that I'm making room for it in my life.  That feels more final than acknowledging the plastic attached to my side, maybe because I do change that every so often.  There are points when this reality hits home hard, where I feel three shades of down that my continued care required this situation.  There are also points where it hits softly, with a gentle, "yep, that's life now" kind of flippancy.  I've only found a couple patterns as to what throws me down which path yet, but I imagine there will be enough clarity in time to hash it out more fully later.  

Where it stands now, my mood truly does fluctuate with how I'm feeling physically--understandably, given that my anxiety and depression are so linked in with my medical situation.  Now with things going reasonably well, I have the freedom to feel what I want to, which requires a different recalibration.  I'm still tired, bones-deep tired, as we continue to argue with insurance and I re-send three different documents back to HR because I have not been very lucky with reading their mind correctly the first time (and have suggested that verbage be added to the damn rules, if it's so important to be a certain way).  

I suppose things are too fresh to have something all that deep yet.  

The morning routine done, the rest of the day awaits.

When the World doesn't Fit

I've had a few things to think about with all of this time to myself of late as I continue to find that new normal.  One of the largest difficulties for me at the moment is finding the best strategy for emptying out my colostomy bag.  The bag is attached to my skin by adhesive and, I remove the whole appliance every three to five days.  This means that I empty out the bag out the end in the interim, undoing the plastic Velcro and unfolding it out, like piping the most disgusting bag of frosting out of a wide mouth.  Sometimes this means sitting on the toilet with my legs straddled out as far as they'll go to lean over and empty it into the bowl.  Other times, I've knelt on one knee (I call that "the Kapernick" in my head) or two or otherwise squatted in front of the bowl with one leg on either side to do the same. 

And I was struck by a very real truth:  toilets are not designed for me anymore.  Apart from the awkwardness of trying to find a comfortable position to empty the bag, I tend to empty it out in the front of the bowl, meaning that it doesn't always get flushed down as cleanly as anything landing in the water in the back of the bowl.  It's a simple example, perhaps, but still a strong realization that I will certainly find other ways, too, where the world is not necessarily created with my needs in mind.  And I was also then struck by the understanding that there are many, many others who experience this feeling on a larger scale.  This, then, provoked a question:  after this surgery--and even before it--do I count as disabled?

Now, I want to clarify firstly that the better phrasing is "persons with disabilities" rather than "disabled persons"--I refuse to be defined by my disease and grant the same courtesy to anyone else.  However, I have phrased the question in such a way that recognizes that common colloquial sense of the situation.  I also know that I'm no less of a person because of some of the adaptations that I will need to make.  

That aside, this is still a loaded question.  The thing is, disabilities are just as visible as race for a lot of people.  There are prejudices and ignorant comments.  But there is also community.  For example, the Deaf Community has its own vibrant culture, and it is different for those that are hard of hearing vs deaf and different still for those that were born deaf or hard of hearing vs became deaf or hard of hearing vs someone with a cochlear implants.  Not necessarily a status or social class, but a difference.  There is belonging, and I'm looking to see if I can belong.  Where are the lines?  How do I know if and where I belong?  I know three other people with ostomies, and that alone gives us a particular bond, a fraternity, a trust.  Us four hold secrets and experiences that no one else truly understands.  We stand open to each other for questions, advice, and empathy.  Closely related are those that care for people with ostomies, those that understand by proxy if not the same visceral understanding.  A community of those with a particular kind of understanding of these needs, under a label.  

Additionally, I will have specific needs.  I might need to take a few minutes out of the work day to administer a bag change, which could be awkward at times when one-on-one with a client and I must escape or even change clothes.  I have already been working through several of these conversations with myself.  It is possible that people will not choose to be understanding about this, and I already have some strategies to document these instances to let project managers know, if it becomes an issue.  My immediate managers, of course, are already in the loop and have been very supportive.  In a different job under different management, those minor absences or additional absences for different doctors' appointments could lead to being fired.  Could I have a good case if I chose to take it to court?  What are my rights underneath this label?  I've been looking into the Americans with Disabilities Act to see what's actually there and trying to understand what could apply to me.  

And even on a basic level, just how visible am I?  There is a decided scale here, where the visibility of one's disability brings reflexive levels prejudice from ignorant people.  But on the other hand, when I see someone has a cane I think to offer assistance over rough terrain because of those visual cues.  This is something that I've wrestled many times over, that I would appreciated it if people knew that I needed help before I had to ask while at the same time I appreciate not having to have my illness factor into all of my relationships except within my control.  Currently, I'm still only as visible as I want to be.  

I'm still digesting this idea, what it can mean and what it does mean as I seek to understand and define my life as it will be.  I know I will have to figure out what that means for myself, knowing that I am always growing and otherwise don't fit in any box but still looking for the right words to explain who I am.  This one is going to require some additional thinking.