happy new year!

I promise this won’t be one of those posts apologizing for not blogging for so long.  Life has been… full, so full that I won’t even attempt to catch you up on all of it.  My work is frustrating and wonderful and eating up every scrap of energy I have.  Chronic pain from Ehlers-Danlos Syndrome isn’t getting any easier, and it looks like it’s about time to have the other shoulder checked by the orthopedist for possible surgical repair.  My Dominican studies and Education for Ministry class are feeding me richly, when I have enough energy to really take part.  And my husband is the sweetest, most generous, most patient man in the whole world.  I’m truly blessed — I really do get that — but sometimes all these blessings really exhaust me!

Tomorrow, I meet with my manager face-to-face in the office here in town.  This happens only every few months because my manager works halfway across the country and because I telecommute full-time as an accommodation to disability.  And in the middle of the day, about the time my manager will want to head out for lunch, I have a phone call scheduled with his manager (who works all the way across the country from me).  The thing is, my manager isn’t really managing, and I don’t have the authority to make the decisions or to give the direction that need to come from him.  After months of this pattern, I realize that I’m not doing any favors to myself, to my team, or to our customers by allowing this to continue.  So after a direct request to my boss for the decision or direction that the team needs, when he doesn’t respond, I’ll ask his boss to give us the decision.  I’m tired of the political shenanigans.  We need a manager, and if our manager doesn’t want to manage, then I’ll find someone in the chain of command who will.

I’m assured by a co-worker who is not a complete bystander in the situation that this should not be a risk to my job security.  I’m not entirely sure about that, but it’s all right.  It’s the right thing to do for my team.  And I’m not going to let myself be afraid of it.  I just sat in quiet prayer for 20 minutes, and in that time, I heard all the reasons not to fear.

I am a survivor.
I have survived abuse.
I have survived depression.
I have survived attempted suicide.
I have survived separation and divorce.
I have survived chickenpox and pneumonia and flu.
I have survived lay-offs.
I have survived being laid off.
I have survived unemployment.
I have survived college.
I have survived nighttime grad school.
I have survived working with idiots, incompetents, and just plain jerks.

Nobody has power over me unless I give it to them.
Nobody can demand my trust… but I freely give it.
Nobody can demand my respect… but I freely give it.
Nobody can demand my love… but I freely give it.
Nobody can demand my obedience… but I freely give it.

I joke about being mean, and it’s all in fun.
The thing is, there are things that I am passionate about, even fierce:
giving love to every person
finding joy, at all times and in all places
doing the right thing
going about things in the right way
treating every person with respect
giving dignity to every person
believing the best of everyone
finding that almost always, they live up to this belief
giving my trust to everyone, even to strangers.

With God’s grace, I continue to survive.
I survive the pain of disability every day
I survive working, though it costs me
I survive tensions, conflicts, and arguments
I survive agreement, harmony, and peace
I survive boredom
I survive frantic frustration
I survive days when I don’t have time to pee.

And when the sun goes down on those days
when the night surrounds my home
I know that I am not alone.

Anything may happen in my life tomorrow.
I will survive it.
After all, what’s the worse that can happen —
I would die?
I have a promise, though, that I’ll survive even that.

Thanks be to God!

So that’s my anthem.  I know it might sound like a Gloria Gaynor song, but this song is mine, the song that sings in my heart tonight.

The pain index this evening is at about an 8 out of 10.  We have a rather nasty stormTonight's nasty storm blowing through tonight, and I can feel it in every joint.  My knees and hips seem to feel storm the worst.  My neck, shoulders, back, and arms feel the computer.  All of me feels the being a Little Person (my littleness is idiopathic, which means I’m just really short, without having one of the forms of dwarfism that cause disproportion)… but it still affects every facet of my life!  I know I’ll survive it.  I know I’m really blessed.  Sometimes it just gets exhausting, especially when I can’t get to sleep.

This Sunday is our service of Advent Lessons and Carols at church.  This is a worship service that combines readings from the Old Testament, up to the events leading up to the birth of Jesus… but not quite to it just yet, with traditional carols, hymns, and songs that reflect these readings.  It is a beautiful service, one of my favorites of the year, and I’m privileged to be participating as a member of two choirs this year.  There is also a service of Christmas Lessons and Carols, which is similar, and which many churches offer during Christmastide, usually the first Sunday after Christmas Day.  My parish includes an abbreviated service of Christmas Lessons and Carols during the half-hour before our “midnight mass” on Christmas Eve.  I’m excited, and I hope I have enough time for rest both before tomorrow night’s rehearsal and on Sunday afternoon!

Saturday afternoon, my beloved and I will be “ush-ing” at a local performance of The Nutcracker.  I’m really looking forward to this, too… the excitement of the children (and the adults!), the beautiful music, the lovely ballet.  The last time I saw even part of The Nutcracker was in December 2006, just before my daughter’s second spinal surgery, and only six months before my ex and I separated.  I stood in the wings with tears rolling down my face, knowing that I needed to bring beauty into my life.  So much has changed since then, and yet, I’m still the same hedwyg.

Well, it’s almost tomorrow, and I should try again to get some sleep.  God’s peace be with you, and God’s blessings be upon you.

Oh, and the Happy New Year thing?  This past Sunday was Advent I, the beginning of a new church year.  So I really meant it!

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Dribs and Drabs – just a personal update

This week hasn’t been very bad, since Saturday’s unpleasantness.  My plan for this post is to make a bullet list, and not to elaborate very much on any one thing.  We’ll see if I can keep that up.  🙂

  • Sunday night I watched the pilot episode of Firefly and ate my baked ravioli.  It was relaxing and wonderful, and I was reminded once again just how much I enjoy that show.  I totally ❤ Captain Reynolds.
  • Throughout the day on Monday, I was pretty well zombified, despite a good night’s sleep on Sunday.  I was brain-dead and couldn’t concentrate on work.  I think I spent most of the day staring at my monitor, completely unable to comprehend what was in front of me.
  • Tuesday afternoon I had physical therapy.  My therapist had to hold the trigger point for my left hip for so long that he ended up leaving a bruise.  Of course, you could bruise me just by looking at me cross-eyed – all part of the Ehlers-Danlos fun!
  • On Wednesday, I met with my psychiatrist.  The last I’d seen him was one visit in the fall of 2006 – about the time all the pain was beginning – and it had been about two years before that, since we’d ended all my meds.  It was nice to talk with him, and we touched on our mutual fascination with cultural issues (sexism in diagnosis and treatment of chronic pain disorders), odd mechanisms of the brain-mind-body connection, and processes for getting drugs tested and approved.
  • My psychiatrist agreed with me that Type II Bipolar is not the correct diagnosis for me.  Hallelujah!  I definitely had major depressive episodes, associated with emotional abuse, but I just don’t fit the bipolar profile (whatever that is – but I know it’s real, because I and others can say, “Yeah, you do seem like a bipolar” or “Really?  You don’t strike me that way”).  He didn’t know what diagnosis to use for the visit, since I don’t meet the DSM-IV criteria for a diagnosis of depression or of anxiety disorder.  Hee!  I think he finally settled on dysthymia.
  • My hips and SI joints have both been acting up all week.  I’ll get pain in the groin, along the side of the hip, and in the back.  My physical therapist advised heat after he released the trigger points, and I’ve been using ice again since then.  Ice is my FRIEND!
  • It is now less than a week until I see maplestar again – WOOHOOOOOOOOO!!!!!!!  Um, excuse me.  That was probably less than decorous.  I’ll try harder in the future.  😀
  • Wednesday evening, my parents took me out to dinner.  I had a prime rib that was supposed to be 12 ounces, but I think it was a 16 ounce cut.  It was THICK and juicy and wonderful.  I got a baked sweet potato with it, and it was terrifically yummylicious.  I adore just a plain baked sweet potato, though they did top it with butter and a dash of cinnamon.  Mom was curious and tried a taste, and agreed with me – awesome!
  • I’d bought four grapefruits last Saturday at the grocery store, peeled and sectioned them, and stored them in tall 4-cup ziploc containers with a quarter-cup of splenda in the refrigerator.  They were gone by noon Wednesday.  I’ve always loved lightly-sweetened grapefruit, and I’ve enjoyed taking about a half-grapefruit’s worth of sections with a meal, or just grabbing a couple slices straight from the fridge for a refreshing snack.  Wednesday afternoon, I bought six more!
  • I’ve had three phone calls from my parish clergy this week.  I feel very loved and cared for!
  • I am enjoying the HECK out of last.fm, which is billed as social networking for your music.  That part can be fun – I just have it feeding into my FriendFeed – but I’m really enjoying how it “learns” my musical tastes.  There is a tool called the Scrobbler, which you can run while you’re listening to music on your computer, and as you listen to things, you can add them to your library on last.fm and/or “love” them.  I did this for a week or two, and then logged into last.fm to play its recommendations for me.  It is so wonderfully random to get a classical track, an 80s hair-metal track, a love ballad from the 70s, a folk song, another couple classical pieces, …  I love it!  There is much joy in discovering and re-discovering music.  I have always been fed by music, and this tool is really really feeding that part of me!
  • I’ve tracked my temperature all week, and I seem to run about 1.5F lower than most folks.  When most people peak around 99.6-99.8 in the evening, I’m at about 98.2 or 98.4.  Overnight I dip to almost 96, and during the day I’m usually in the 97s.  The physical manifestations of Saturday’s panic attack could just as easily be symptoms of mild hypothermia.  So we have correlation, but the causation is not clear.  It’s mostly a whatevs! from me, but I do find that interesting.  I’ve been developing theories of why that would be, but don’t really have a way to test it.
  • Since I’m experiencing system-wide inflammation, and it didn’t get so terribly painful until I started undergoing prolotherapy, I’m wondering whether that intentional injecting with inflammatory agents over six weeks may have somehow been a trigger.  That would support the pain doc’s hypothesis that I have something auto-immune going on.  Of course, it’s so hard to separate out all my symptoms to figure out which point to an auto-immune disease and which belong with EDS or something else.
  • I have a discussion group to lead at church Sunday morning, and I’m not sure how I want to approach this week’s lections.  Both the OT and the Gospel lessons are rather harsh, so I may (amazingly) go with the epistle reading from Paul, which my rector called a Prozac Reading.  Of course, that’s what my lectionary reflection for the week ended up being based on, as well.  I shake my head at this, because most of the time, I find Paul inscrutable.
  • I’ve been trimming back my budget over the last couple weeks, doing things like cutting all but the local stations from my TV service, reducing my internet bandwidth to 10Mbps incoming from 20Mbps, switching local phone providers.  I still need to cut more, but I’l figure that out once I’m stabilized with the new stuff.
  • I’ve found a lawn company that I really really really like.  They do such a professional job when they mow – edging, weed-whacking, and blowing debris from the sidewalk and driveway – and they’ve also trimmed my hedges and planted a Japanese red maple that has been sitting in the garden bed in its pot since May.  And their pricing is excellent.  I’m so happy!

Okay, I guess that’s about it for now.  It should be more than enough!  🙂  Have a great weekend, my friends.

The six Ps of discernment?

The assistant to the rector at my parish pointed me toward this blog, where poetproph has begun working on some questions to aid in discernment. They’re a fun and interesting set of questions, and I like how the themes all start with the letter P. So I thought I’d give them a try here, and see how my reflection goes. The questions are:

  1. Profile: What is the identity I present – superficially – to the world?
  2. People: Where is my community? Who is “we” to me?
  3. Purpose: What is the work or activity that makes me feel most whole and alive when I am engaged in it?
  4. Passion: When I look at the world, what is it that makes me passionately desire change?
  5. Prayer and Practice: How do I pray? What are my spiritual practices?
  6. Play: How do I take Sabbath time in my life?

Of course, I’ve abbreviated the questions for this blog entry, but I encourage you to go look at how poetproph frames each of them and clarifies what she means. So here goes.

Profile

When I’m asked “Who are you?” or “What do you do?” my answer almost always depends on context. Well, duh. But most frequently, I identify myself by my career path. I’m a software engineer or I develop software. Even over the last couple years, when this has been not accurate for how I spend the bulk of my time at the office, it has still been easier than trying to explain my role. And, to be honest, I still identify most strongly as a software engineer, though I know I’m really good at doing business, financial, and management analyses.

Most frequently, when I’m asked this question, this is what I say. There are other answers I would love to give. I’m a survivor, and I have claimed my own strength and power. I am a creative spirit. I am an Episcopalian. I am a flutist. I am a musician. I am a blogger. I am a child of God.

People

Where is my community? I find this question hard to answer. There are many places (some tangible and others virtual) where I find community, but truly, my community is where I am. And while I’m not quite on the same level as my mother or grandmother (who don’t know the definition of the word stranger, because they’ll tell their life stories to anyone, anywhere, at any time), I do try to make community wherever I find myself. I definitely have a strong community at work, both in my physical office and with the people I work with all over the country and even in Japan. My family forms a community, in widening concentric rings. I take part in three fairly strong online communities – with greater and lesser degrees of involvement at any given time – and hover around the periphery of a handful of others. My parish home is a community, and there are smaller communities that form wes for me, most notably the choir. I immediately felt a sense of community in the concert band I joined this past fall, but due to physical limitations, I could not continue playing with them, and even though I went to only three or four rehearsals, I still miss that community.

What is key to me is the intentionality. A group of people may find itself together by pure happenstance, but they become a community when there is a common thread, a common purpose, when they come together intentionally for the community. I did not chose my parents, but I am intentional about being in community with them. And, of course, those of you who have known me for a while know how turned on I am by the idea of how important shared story is in intentionally forming and building and shaping our communities.

Purpose

This question is hard for me, and I guess I am going through some mid-life work around this. There are a number of activities that really light my fire. I love data modeling, which operates on several layers of abstraction, and allows you to go from deep in the weeds to 50,000 feet, and then back down again. I am tremendously creative, and I love to write. Software development is amazing because I can focus on solving a problem and get that bit of delight in making a computer do exactly what I want it to. I adore making music, playing, singing, composing.

But I seem to get the most satisfaction from those activities or any others when I know that what I am doing is helping someone. It may be that I’m engaged in an analysis to help a group of managers to understand some subtle but key part of their business, so that they can manage it better. It may be that I’m automating some tedious, repetitive task so that people can get something done more quickly and accurately. It may be that I’m helping someone to make sense of reams and reams of data, and distilling from it the information that they can use to further their mission. While I do often write for myself, I also tend to recognize the things that are fairly common, if not universal, and hope that if I’m not shedding light on those struggles for someone else, then at least I’m giving them the comfort that someone else struggles with them, too.

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Continue reading “The six Ps of discernment?”

Little things

So now we’ve entered Holy Week again, the road that leads to the cross… and thankfully, beyond.  Palm Sunday at my new parish home was wonderful, and I was thankful once again to have been welcomed and embraced in that community.

On the afternoon of Good Friday, my son and I begin the drive to Ontario to visit my beau.  I’m excited because he’s agreed to participate in the music-making on Easter Sunday.  My fiancé is the organist at his parish, and my boy will be playing violin and I’ll be playing flute with the hymns.  And… I wrote a postlude on the hymn tune Engelberg (“We know that Christ is raised, and dies no more…”) that we’ll all play together.  I’m so thrilled because my son hasn’t wanted to make music with me before.  He has matured so incredibly much over the last couple years, and it is amazing to watch and listen to him.

My daughter has been under the weather for several days now, and I’ve been worried because I don’t know what’s going on.  It’s hard, because her only symptoms are fatigue and weakness.  No fever, no congestion, no sore throat, no swollen glands, no tummyache.  Just fatigue, and a slightly elevated white blood cell count.  She slept until 2pm Saturday, which is very unlike her.  When she got home from school yesterday, she went to bed, and only got up for us to go to the doctor.  She slept ten hours last night, watched a movie while lying on the couch, and then took another two-and-a-half-hour nap.  She has seemed okay this evening, but I’m still concerned.  I hope she does okay with a full school day again tomorrow.  I’m putting her to bed by 9pm tonight, and being sure she has a water bottle with her at all times.

Over the weekend, I hung curtains, put pictures on some of the walls, got my new gas grill put together, assembled more pieces of furniture, and spent way too much money at the hardware store.  This afternoon, my daughter and I went up to the U-Haul to fill my propane tank, and then stopped at the grocery store to pick up a gorgeous piece of Porterhouse.  I lit the grill – it didn’t explode! – and cooked our steak just perfectly.  We had it with salad and a fresh baguette from the bakery.  It was a wonderful supper.  And I was so cheered to grill out again.  In Virginia Beach, anyone who signed a lease on an apartment after some time in 2001 (IIRC) is not allowed to have a barbecue grill on their patio, so I haven’t grilled out since I moved out last June.  I used to grill all year ’round – burgers, hot dogs, ribs, chicken breasts, pork chops, steak, vegetables, quesadillas, potatoes, kebabs.  Mmmmm!  But most of all, it felt great to put together the grill and fix my first supper on it, all by myself.  It’s been great to finally grow up and feel independent.

Amazingly, over the last year as I’ve learned to be free and independent, I’ve also learned how very much I need other people, and that is an equally precious gift.

Well, my friends, I wish you a blessed Holy Week, and all the joy and wonder of Easter.

Happy Thanksgiving!

For your listening pleasure, I offer you the Prelude on How Can I Keep from Singing? composed by me, and performed at last night’s worship service at Old Donation Episcopal Church by myself and our organist.

Prelude on How Can I Keep from Singing

This morning has been a beautiful one here in Virginia Beach. I was awake at 5am, so I got my grocery shopping taken care of. Unfortunately, I hadn’t turned off my alarm clock, so it awoke my poor daughter, who then couldn’t get back to sleep either. We went down to the oceanfront, since it’s so warm this morning – until the cold front comes through this afternoon and drops our temperature about 30 degrees F – and Becca waded in the surf and collected pretty shell fragments and rocks while I look lots of photographs. Even better, we saw not one but TWO rainbows in the northern sky this morning. It was amazing.

We’re having beef stew for supper tonight – and of all things, Taco Bell has been requested at lunchtime today – and have plans for nice meals later in the weekend. Slow-cooked pork barbeque is on the menu for Saturday’s supper, and Sunday will be a full turkey dinner at my parents’ house. So even though we didn’t make our trip to Baltimore, we’re still going to have a great holiday weekend, just us girls.

I hope you have a wonderful Thanksgiving and that, no matter where in the world you are, you find at least one thing to feel thankful for today.

An update for the Sabbath

Hello, dear ones! I wanted to let you know what’s been going on, since I have done a lot of complaining in recent posts. 🙂

First, the kitty. Midnight is on a different appetite stimulant that has really been stimulating her appetite since Thursday. She’s eating at least as well as normally now, and seems happier. I can tell she’s not feeling completely back to normal yet, because she still doesn’t want to leave my side, and really just wants to cuddle and/or sleep. But this is okay. She’s going to pull through, and I didn’t have to hospitalize her, and I am deeply and joyfully thankful for both of these.

Second, me. Sigh. It turns out that there is something I’d been suspecting for a while but not been able to verbalize. Every joint in my body is hypermobile, meaning that it can move too far without me knowing there’s a problem with this (i.e., without the warning sign of PAIN), and can then cause injury to the joint, to the connective tissues, or just general pain all around until it is put back into the right position. This form of hypermobility is hereditary (my mom has it, too, and possibly my son), is usually accompanied by easy bruising (check!), and usually leads to the early onset of osteoarthritis in the joints (my hands are already starting). The apparent cause of this is a problem in the way the body produces the collagen that makes up the ligaments, and there’s not a known way to “fix” this problem. There’s a pretty decent overview of hereditary hypermobility here.

What this means, in general terms, is that I have to strengthen and tone all of my muscles – especially the little ones inside the joints that most people never know they have – so that those muscles can do some of the work that my ligaments are unable to do. And I have to keep these muscles strong and toned for the rest of my life.

The first place we want to address is workplace ergonomics, since I spend so many waking hours sitting at a desk in front of a computer, at a cubicle and in a chair that are designed for people about a foot taller than I am. Meanwhile, I’m continuing in PT to get the shoulders back to where they should be, so that then they can help me get into a more generalized exercise program to help the whole body. I’ve been told to avoid absolutely anything that has impact, and to stick with things like tai chi, aquatic exercise, and Pilates. Yoga is out, due to the hypermobility, and the martial arts I love so much are out as well, because of the impact.

For the immediate short term, I’ve been prescribed a muscle relaxant and a painkiller that have relatively low side-effect profiles, as well as a sleep aid to get me sleeping through the night again. These do make me a bit slow and sleepy during the day, but I’m still more “with it” than I am when I’m in incredible pain. With the added benefit that I’m not in incredible pain. Just a bit. Still, all the time.

My daughter and I were hoping to get to a convention over Thanksgiving weekend in Baltimore, but I’m not sure yet whether I can do that five-hour drive each way. So we’ll have to discuss this over the week. I have resigned from the concert band I’d been playing in, because I cannot handle sitting and playing flute for two hours straight each week. Maybe in a couple years, after working the muscles up to tone, but not now.

However… I do have one bit of exciting news. My parish is hosting the ecumenical Thanksgiving eve service for the congregations in our neighborhood this year, and our organist had approached me about playing a flute/keyboard piece for the prelude. I took this a step further and wrote a prelude based on How Can I Keep from Singing? for flute and organ. I had much help from my best friend. I got to hear it for the first time today – other than through Sibelius on my computer – when we rehearsed after church this morning. I’m pretty excited about it; I can’t wait to hear it Wednesday night. And it will be interesting to see how long it takes people to notice from the bulletin that my name is in the place where the composer usually goes. Hee hee!

Checking in, saying hi!

Good morning, all!

I know I have been remiss in posting. It’s been a couple weeks since I wrote a lectionary post or a piece for Writers Island (where, by the way, this week’s writing prompt is another rich one). But I’ve been busy. Between my daughter’s hurt foot at the beginning of the month, a trip to northern Virginia for work, music lessons, choir rehearsals, doctor appointments, physical therapy, and somewhere in there actually working at my job – well, I’ve been busy. And this week is especially nice because my best friend in the world is visiting from Canada.

He flew in last Thursday, and we spent the weekend visiting Monticello, driving Skyline Drive, and worshipping at the National Cathedral on his birthday. Between us, we took over 600 photos, and we’re still sifting through them. It was a gorgeous weekend, and the Blue Ridge Mountains were lovely – peak leaf season this autumn! Last night we met my parents for dinner at one of my favorite bbq restaurants, and this morning we had birthday cake for breakfast. ‘Cause when you’re a grownup, you can have whatever you want for breakfast! Remember how when you were a kid, you just knew that your parents were waiting for you to leave for school so that they could break out the cookies and brownies and cakes and ice cream? Well, they were. 🙂

Yesterday afternoon, my kids were giving my friend a hard time because he is very polite, which you may have heard is stereotypically Canadian. I told them no, he was only being nice to them out of respect for me, and he let out a snort at this that had the kids just about rolling on the floor with laughter. It was well done.

Today we – blissfully! – have no plans, but on Wednesday, after my voice lesson, we’re going to a concert by the Virginia Symphony. And Thursday night is choir rehearsal, which is mandatory, of course, because my friend is the organist and choir director at his parish in Ontario.

I’m taking Friday off from work, and we haven’t decided yet what we plan to do. We’ve considered bicycling in the Dismal Swamp along the boardwalk to Lake Drummond, and have also thought about taking the ferry to Jamestown and seeing the first permanent English colony in North America during it’s 400th anniversary year. (As you might be able to tell, Virginians are rather proud of this, this year.) Of course, there’s always the Virginia Zoo in Norfolk, the Norfolk Botanical Garden, or my favorite local museum, the Virginia Living Museum. And then on Saturday, he flies back home, to where it’s cold instead of pleasant and even is supposed to snow in the next couple weeks. Of course, we could desperately use some moisture here in Virginia, but I’m nowhere near ready for snow yet.

Let’s see… what else… I’ve just finished writing a prelude for organ and flute based on How Can I Keep from Singing – but I haven’t gotten to really hear it yet, just on the computer. I’m looking forward to it; if it meets the approval of the organist at church, we’ll play it for the ecumenical Thanksgiving Eve service. I’m also learning a Vivaldi piece for the prelude on November 4th (All Saints Sunday), and lots and lots of good music in choir for All Saints, Christ the King, and of course, Advent and Christmas.

So yes: much busyness, much fun, much beauty. Thanks be to God!