New year, new month, new chances

The new year is just barely upon us - I'm sure most of the party-goers are still partying, and the bars are far from closing - but I am awake, and wanted to get this down.  

in 2013 I'm not going to do all-or-nothing resolutions.  Instead, I'm going to set some goals each month, and see what happens.  I'm starting January off with a bang by attempting four different things.  

So how's that working out for you?

In a recent post, I mentioned "I sometimes know my limits, and the morning after a full day of traipsing around the southern half of the state only leaves me feeling a little over-extended.  but there are times I push it, and must face the consequences, or the roulette wheel lands on "sucks to be you" and a low-key afternoon stroll sends me to flare-city."  Guess which side of the coin came up after yesterday's adventure?  

ooof.  

It could be worse.  It could be so much worse.  But I still find myself getting angry that a day of walking around (in the cold or not) leaves me feeling so beat up.  "It's not faaaaiiiir!" i want to whine to anyone who will listen.  But what IS fair?  

I made myself get dressed and leave the house today.  I knew that it'd be far too easy to waste the day on the couch, napping and wallowing in self-pity despite how amazing yesterday was.  Besides, I had some things I needed (new wiper blades and a headlight bulb for the car, some groceries), some things I wanted (big 50% off sale at Jo-Ann! woo!), and some things I really should've done but just didn't happen (visit my stepbrother, sister-in-law, and nieces who are in town).  I thought about pushing myself to fit in the visit, but after the grocery store, I knew I was running out of spoons and needed to get myself home.  Yes, it sucks.  the non-perishables are still on the kitchen floor, waiting to be put away, and I haven't had the oompf to tackle the car stuff.  

Do I regret yesterday's outing?  Heck no!  I'm still gushing about it to anyone who will listen!  

Would I do things differently next time?  Yes, probably.  I could find more opportunities to sit down and rest my sore foot.  I could take some time to stretch and flex and bend so my back/hips/knees don't stay so stiff.  I could remember to take some ibuprofen at lunch and/or dinner.  I could also suggest we split up for a bit, so he can move at his own (faster) pace.     

So, I will try again another day.  This stepbrother and his family live a reasonable driving distance away, so paying them a visit at a later date is doable.  The groceries will get put away after I post this entry.  I'll tackle the car stuff tomorrow when the sun is out and it's a bit warmer and I can back the car out of the garage.  I'll take my meds, and get a good night's sleep tonight, and start fresh tomorrow.

Lights, Camera, Snowfall

Never thought I'd visit a zoo in the dead of winter, but today I did just that.  I also didn't realize that the zoos do things up big for the holidays.  guess I should leave the house more, eh?

We got a nice blanket of snow on Wednesday.  I suggested to my friend that we drive around and look at Christmas lights.  He suggested we hit up the Columbus Zoo for their Wildlights thing.  The more we talked about it, the more we realized we should just make a day of it, so today we did!  He brought his camera gear, and we spent the afternoon enjoying the zoo exhibits in near-solitude.

It was cold, but not unbearable.  we had a nice light snowfall for most of the day, more noticeable when we were standing still.  the zoo was impressively decked out with lights.   It was really kinda strange to go through an entire exhibit and only see two other non-employees, but it was wonderful to have the place mostly to ourselves for a time.

I think I would've been happy to just walk around the grounds and admire the lights and the snow before the crowds came out; the animals were a nice bonus.  I haven't been to a zoo in 14-odd years, so this was a treat.

The light show was the usual choreographed stuff; the sheer volume of lights was more impressive to me.  We his paydirt on a little side path, where some low shrubs were covered with multi-colored lights and a blanket of snow.  The glow was beautiful, and my friend got some amazing shots.

I needed this, a day out, moving around, my mind on other things.  I needed to laugh, and make snowballs, and marvel at the world outside of my little bubble.  It was good to forget about the dirty dishes and the "check engine" light and the unfolded laundry and unfinished Christmas gifts.  It feels so good to get out there and live; why is it so hard to make myself do it?

Reboot

So, let's try this again.  a new year (soon, anyway), a new try at this blogging thing.  I keep a journal, and have for years, but this space is different.  I want to write more deliberately, on a particular topic, rather than brain-dumping or venting my spleen.

Hanne's post about having a body practice, in addition to my new year philosophy of "use it or lose it" got me thinking ... so here I am, blogging again.

quite simply, my body practice would be "use it or lose it".  Weight loss, firming, toning, improved cardio-vascular stamina and a smaller backside may all be a natural result, but quite simply, I need to move this body of mine.  I have a desk job, and the current incarnation of said desk job has me staring at a computer screen with little cause to move anything but my mouse-hand, for hours at a stretch.  (Previously I could count "stuffing envelopes" as an upper-body workout, alternated with delivering mail and packages for cardio and flitting around as everyone's beck-and-call girl).  When I do managed to stand and move, I'm like the Tin Woodsman after a rainstorm: creaky and crunchy and whimpering "oil can" between clenched jaws.

I talk myself out of moving because it'll hurt, or I don't feel good, or whatever lame excuse sounds good at the moment.  But when I move, I feel good.  If I'm doing something fun in the process (splashing in the pool, tromping around cemeteries with my friend, shooting hoops with the boys), I laugh, I enjoy myself, the pain fades from my thoughts and maybe, just maybe, I forget everything that's wrong with me.  When I get home, I gush about what a great time I had, and then I sleep soundly and usually wake up feeling rested and content in a way that currently eludes me.

Yes, sometimes I wake up feeling like I've been hit by a truck.  It's part of the package deal that is living in this body.  I sometimes know my limits, and the morning after a full day of traipsing around the southern half of the state only leaves me feeling a little over-extended.  but there are times I push it, and must face the consequences, or the roulette wheel lands on "sucks to be you" and a low-key afternoon stroll sends me to flare-city.

July through October were good months for me, socially.  I had plans nearly every weekend with my friend, and we went on all manner of adventures.  He taught me to make homemade pasta, and took me to hand-feed hummingbirds.  I dragged him through my childhood, past the various homes of long-dead relatives and packed us picnic lunches and manned the GPS (dubbed Christine) as we hunted down various roadside oddities.  And i've loved every second of it.  i want more of this, this living my life.  Is 41 too late to begin living?

So, with that, I am going to take Hanne's challenge.  my body practice is going to be to move my body. How do I want it to feel?  I want it to feel like I'm alive.  

Excuses

Five months, eh?  no, i didn't fall off the planet.  I've been busy.  doing what?

--i joined the gym.  my attendance isn't all that impressive, but i really enjoy the water aerobics, and when i can get myself there regularly, i feel pretty good.

--i started stitching again.  i have 409232 hobbies it seems, but i don't make time for them like i should.  so i picked up needle and thread and finished a handful of small projects.  it feels good to be productive, to start with a pile of stuff, and have something beautiful to show for it a week later.

--i went on vacation.  an honest to goodness, leave-town, do touristy stuff VACATION.

--i got social.  no, not twitter, but people.  due to a strange combination of circumstances, i was able to spend many weekends in a row with a friend, doing everything from browsing a farmers market to hand-feeding hummingbirds to traipsing around back roads with no real destination in mind.  bliss!

*~*~*~*~*~
my ability and willingness to go-go-go for so long surprised everyone, myself included.  i'm really used to my lazy weekends on the couch.  unfortunately, the heat of summer finally broke, and with the cooler weather and more frequent storms, my body is being cranky and demanding more sleep and complaining louder and more frequently than before.

at lunch the other day, i told my friend that i want to make a point of doing something every week.  dinner, games, movie night, whatever.  just get in the habit of having people over and being social.  i hope that other friends will do the same, and i won't fall into the antisocial funk this winter when things get dark and gloomy.

the summer was also a break from doctors appointments, and for a brief while there, i could almost convince myself that i was normal.  Almost. 

taking a syringe to the knee

had my latest follow up with my rheumatologist last week.  the results of the blood work warranted him ordering yet another round, this time testing for various B vitamins.  he said i was mildly anemic, which i thought was odd considering the whole menopause thing.  He wasn't concerned - no orders to take iron supplements or anything like that - but i'm taking it as a sign to eat more burgers and thrown in a steak once in a while.

i have a friend who processes samples at the local lab, so i've been paying more attention to the tubes and stuff when i have blood drawn - the different tubes have different purposes, and the different types of tests require different types of samples.  a new one for me:  wrapping the vial in foil!!  the sample for B vitamins needs to be protected from sunlight, so as soon as it was drawn, the nurse wrapped it up tight.  she said some places have black tubes.  i'm utterly fascinated that people have figured all this stuff out.  if people like me were running the world, we'd still be in the stone age, doing thing the most difficult and inefficient way possible.

the good news is that all of that appeared normal.  i suppose it's just the normal ebb and flow of the human body.

Since my appointments with this doc are never just "blood work looks fine, see you in three months," we got into the nitty-gritty of daily life.  knee pain --specifically my "crunchy" knees -- is getting to be problematic, rising above all the other things in the Sjogren's stew.  Doc quizzed me about it, and i fully admitted that i'd spent the last too many weekend on the couch because of the pain, too hurty and too tired to be willing or able to do anything but stay off my feet.  he did not like that. it means i'm letting this thing get me.  it's a vicious cycle, and one we need to break.   he once again ordered me to exercise.  but instead of stopping there, he actually told me NOT to walk.  because when i think "exercise" i think "start with walking, THEN move to "real" exercise when i'm in better shape".  given the state of my knees, that's actually the WRONG way to go. strength straining (weights/machines) and water aerobics are where i need to be.  he told me to "dick around on the machines" in a gym.  he always uses that term "dick around" which i think is just hilarious.  he told me that I'm "smart enough to figure it out but also smart enough to talk yourself out of it."  oh yes, he nailed that one.  the other thing he said that haunts me still:  I am really quite healthy overall.  exercise is the one thing i can do to maintain this.

to jumpstart the exercise and give me some relief, he gave me some knee-strengthening exercises to do at home, and then gave me kenalog injections into both knees.  needles under the kneecaps are not my favorite, but in the grand scheme of things (like this!), are pretty cool.  this wasn't my first round, so i sort of knew what to expect.  last time i remember much more of a numbing sensation initially, which is kinda freaky.  the pain isn't totally gone, but it's decreased enough that i can move a little better, and grumble less when taking the stairs.

I promised the doc i'd look more seriously into joining the local YMCA.  a friend and her family just joined, so i've got the added benefit of having someone to cheer me on and keep me accountable.  she's already taking a couple water aerobics classes and liked them, so i should have a built-in workout partner once i get myself motivated.

now that it's the weekend again, it's time to put this all to the test.  my nephew's baseball game was rained out, but that's no excuse to keep sitting here like a lump.  so, on the doctor's orders, i think i will remove myself to the car, drive about an hour to where a friend is spending his day at a craft show, and do some shopping.

The morning(s) after

A couple weeks ago, i had a party.  Well, not a party in the fancypants soiree type of thing, but a casual gathering of friends, just and excuse to make yummy food and eat, drink, and be dorky.  Preparing for this was a fairly major undertaking for me, and i am still recovering from it all.

such is my life.

Am i complaining?  no.  am I frustrated and sometimes angry and most of the time lots of other things i don't quite have the words for?  you betcha.

my monday through fridays are spent working a not horribly difficult job in a big scary corporation, and my evenings and weekends are spent recovering.  A good week will allow me to have more the rice chex for dinner, and i might even be able to stay on top of the dishes.  in a not-so-good week, i drag myself to work work and back and that's just about it.  good or bad, everything else tends to get overlooked.  junk mail piles up, clean laundry never makes it from the basket to the closet.

Winter is especially difficult. it's so cliche, but this time of year i get sick and tired of being sick and tired. i force myself to have people over at least once to keep myself from turning completely feral.  tonight, leaving work, it was such a relief to see the sun.  i drove to work without my headlights on because it was bright enough, and driving home was the same.  it's the first time this winter i've been able to do this, and as dorky as sounds, seeing the sun return gives me a tiny glimmer of hope.

New results

After an impressively long game of phone tag with the doctor's office, I finally got to speak to a human (the nurse) who told me that my lab results showed everything was "just fine". 

i want to see the numbers for myself, and do some digging as to what's what on these blood tests, but I am relieved to not be facing some new and troublesome craziness.

Of course, this makes me wonder what happened with the first test - bad sample?  lab error?  something I did or didn't do that day that I didn't or did do on Monday? 

in the eight years I've been treated for this disease, I've never done much digging into the specifics of the blood tests.  Clearly, I need to do my homework, and start taking a more active role in this.

Hurry up and wait

one of the more annoying aspects of Sjogren's is that the disease itself isn't treatable. The best I get is the treatment of symptoms.  Don't get me wrong - i'm thrilled that modern medicine allows me to take anti-inflammatories and saliva-stimulating drugs and eyedrops to east the swelling and irritation in my eyes.  I just get tired of not being able to make it go away. 

quick FAQ

• It's pronounced SHOW-grins.  The J acts like an H. 
• "autoimmune" means the body is attacking itself, not just the nasties that need it. 
• No, you can't catch it from me. it's more likely i'll catch whatevver germ-bug fugitive you're harboring.
• No, it won't kill me. Not directly, anyway. 
• Sjogren's is a lot like lupus, but with a little bonus.
• And yes, this is the same thing Venus Williams has

Any other questions, feel free to ask.  I will be addressing all thing Sjogren's in the coming weeks.