Relics

I have several half-baked blog posts written up, but this is the one burning on my mind. 

Andy and I have been packing up our apartment and moving to a new townhouse.  Every now and again, I run across a relic from some memory or another--maybe from when Mike lived with us for a year, or the infamous cream of tarter story that Andy will never live down, or remembering when we had just moved in and played a game with some friends that involved one of my characters being a possessed food processor ("KitchenFiend," with special ability Three Step Salsa).  More often, though, the relics I'm finding are relating back to--well, I don't have a really good word on what to call it, actually, but I'll stick with "the first year and a half of our marriage."  That rough patch, where my health was our major concern.

I found Hibiclens soap.

This is the soap that I had to use on my open wounds and ostomoies or the night before another surgery.  It was safe for those very sensitive and vulnerable places, coating in a  red veneer.  More often I referred to it as "the gas station soap" because that's what it smelled like.  I threw this out with some extra force.

I found all three of my Mayo Clinic pillows.

I made it a point to bring one of these home from each Mayo surgery.  I can point to this and tell you which parts I don't have anymore and what is particularly angry still.  I referred to any one of these as "Little Red."  They were also functional:  whenever someone has had surgery on their abdomen, the most dreadful thing can be a cough or a sneeze, a violent wracking of the body when all the sutures are trying to hold together.  The idea was to hold the pillow against the body for laughter, coughs, as a pain coping mechanism, etc., so that the compression against your stomach would help counter sudden movement.  When my kidneys were starting to quit from all of the antibiotics and the stress of infection, I even used it walking around.  Plus, you had to give yourself a hug as part of the process, which was kind of nice to have anyway.

Speaking of my kidneys stressing out, I found the wrappings for my legs.

[No picture for this one, but just think longer, looser ace bandanges]

My kidneys really were shutting down, as in they were discussing dialysis as a possibility if they didn't start leveling out soon.  We couldn't leave for home until my creatinine and a few other indicators came back down.  My body was breaking in a few ways at that point, the dissolving of that tissue around the internal sutures on my colon, well, that mean there was a lot of infection floating around in my abdominal cavity, something that can never fully be cleared, frankly, as we still see in the random infections that pop up.  There's only so much the body can take.  What this meant in terms of other physical symptoms though was that my kidneys were no longer shunting fluid around like I needed them to.  My legs and body swelled to some ridiculous proportions.  That swelling pulled against my sutures.  I literally would roll to one side (pillows propped underneath me to keep me rolled but not too far), sleep a couple of hours, and then need to be rolled to the other--in that time, one side of my body was quite literally heavier, where the fluid had sunk down to the low end in a doughy mass.  That weight pulled on every fresh, healing part of me, worse than the normal after-surgery stiffness.  I threw these out immediately. 

I found one complete ostomy bag change kit.

This one I kept on purpose.  It is a tangible part of some of the most horrific moments of my life.  I have a lot of mixed feelings about it.  I don't know why, exactly, but I know that it's very important to keep it.  Also, with it I found my Mayo Clinic Commemorative Plate, this being the small sandwich plate when accidentally stole from them but keep as a trophy.

We cleared out all of the furniture and stood in the empty living room, Andy and I.  For months, I lived on a small spot of that apartment, only moving from couch to bathroom and back.  I remember trying to stop my ostomy from oozing everywhere one day while I was still determined to be able to take care of myself for a couple of hours.  I remember breaking down into tears in the bathroom, frustrated that I couldn't get the bag to stick correctly.  I remember how we had to stuff pillows so that I could finally sleep in our own bed again.  I see a blur of faces of the people who came to visit me or stay with me for a while, with a warmth in my heart.  I see Andy trying to handle his own frustrations with our situation, managing a similar but still different kind of helplessness.

In that empty apartment, we saw a place where we had had some of the worst experiences of our lives.  I want so very much to leave it there in that space, to abandon it there with a handful of nails, fuzz, and indents in the carpet.  And at the same time, I know that I will keep it, partly because I haven't figured out the best way to carry it, so the weight can still chafe, but also in that Andy and I both grew stronger for the experience.  The good and the bad are all a part of us, the obscenely bad where we made through with the help of those that love us, communication, and a whole lot of grit.  There were some very good memories in our old apartment, our home of five years. 

It's time to pack up the pieces we want to keep and establish something new.

The Physical Aspects of our Trip

Some people think that you need to be a certain age before conversation can settle fully around body parts and bodily functions by means of greeting.

Well.  My experiences have certainly aged me in some ways, where I have as little shame talking about my bowel as a random eighty-year-old woman on the bus might have about her kidney function.  

And here's the thing:  I know that many of you have been praying specifically for my body over the course of this trip.  I have two things to say to these people.  Firstly, thank you, thank you, thank you; the compassion that you demonstrate by acknowledging these very real variables in my day-to-day life truly touches me and makes it difficult to type as I tear up.  We've been addressing this unmet need for compassion in therapy, and I'm trying to find better ways to ask for it or to encourage it further when I see it.  Thank you again.  Secondly, I feel that I owe these persons an update as to how the trip went within this sort of perspective.

How my body might handle the changes and stresses of the trip was one of the most important factors for me when planning the trip itself.  My greatest fear, as I've mentioned before, is that my body would collapse in the middle of the trip and wind up in the hospital or otherwise inhibit my ability to do things, meaning that I would be in Norway but only come away with memories of the hotel room having to rest through all of that precious time.  The anxiety around that latter option was very real because it was highly plausible; the other, well, I have an active imagination and still know how to say "hospital" and "doctor" in Norwegian, just in case.

Now when I mention those fears, there is an important piece of information to help mention:  one of them happened.

I have an abscess that is in such a position that we can never deal with it fully, aside from more or less taking out the rectum (i.e. have an ostomy for the rest of my life).  I have a permanent fistula (Crohn's patients are prone to these, where the body makes weird little connections between different places) that happens to connect between this abscess and out through the skin, so it does drain on its own.  However, sometimes the abscess gets a little out of control, where my energy levels plummet, my appetite goes, pain around that abscess and fistula, and a certain kind of pressure from the abscess itself that is a different kind of painful.  Historically, this has meant a round of antibiotics to give my body a leg up.  Please pardon the pun--this knocks me on my ass and it can do so quite suddenly.  

This started flaring up to the point where I was certain it was happening again about three days before our trip.  I made some very assertive calls to my doctor's office and got the antibiotics started.  This lead to two conflicting emotions, one being frustration that once again my body had fallen apart at a rather inopportune time and the other being relief, that it had at least fallen apart at a time I could ask for help, rather than trying to figure out how to get a round of antibiotics going while in a foreign country.  The worst (as far as probabilities) had already happened so I was no longer dreading it.  

Between the medicine kicking in, eating poorly, and the stress of travel, I was a couple shades of miserable for the first three days or so of the trip.  There was a part of me that was very certain that this was going to be as good as it was going to be, that this had been a failed experiment and travel truly was out of my grasp.  And then, things started to turn around.  This isn't to say that there weren't still points where I felt a little blah, but on the whole my optimism started to return and we started to find a schedule, which included eating more often (particularly with all of the added exercise of walking everywhere) and slowly reintroducing carbs to make it easier to find a quick meal once our energy had run down.  

The museum schedules in Norway  for the winter months seemed to be enforcing this idea of stopping for self-care, with most open from between 11-1500 or maybe 1600.  We couldn't cram in too many museums in a day, we slept in, and then we had to find a cafe for a snack anyway around closing time before wandering into some different stores or returning to the hotel for a little while before deciding where we wanted to walk to for supper.  It also helped us keep a good, lazy kind of pace, while still seeing as much as we could.  This did mean we missed out on a few museums, but that gives us yet another reason to go back.

Eventually, we found a good groove, planning out a couple of things to do everyday but allowing the random conversations and wandering around to get lost in the right ways to fill in the gaps between meals, museums, and shopping. 

Around the end, we began to grow tired of being on vacation but certainly not of being in the country.  And I survived it--my body held out and I was also able to enjoy myself. 

"Adventure" might well be something that I can reclaim from Crohn's.  ...but I might have to take a couple more trips to Norway, just to be sure.