I'm moving

This blog is moving!

Please be patient as I attempt to migrate this blog to a new site:

painpatientchronicles.org

It may be a big glitchy at first as I am new to it and will be relying heavily on the expertise of my web host/developer/maintainter/question-answer/ generally extraordinary person, my brother.

Hang in there with me and I think if will be more fun in the long run!

I'm going to go post a new post there now!

Blessed some more!

I am moving!

Now, I know I made a New Year's resolution to move fewer times this year than last, etc.  Or was that last year?  Anyway, everyone knows moving is a misery, but this time I think it will be a pleasure because I am moving into one of my aunt and uncle's rental houses.  They are currently working on some renovations and getting it ready for me to move it.

It's not just that it's bigger, with a wonderful yard, a real kitchen (a BIG kitchen!), and in a decent neighborhood.  It's that the place I live now is making me sick.  I've been so sick since I've moved here.  If it hasn't been irritated allergies, it's been worse, migraines that last days and more recently weeks.  Sinus infection.  Trouble breathing at night to the extent that I've had to run a cool-air humidifier and use the inhaler the doc gave me when I had bronchitis.  I've never been so sick in my life.

If you close the windows here, leave, and then come back there is a very noticeable smell that I've always tried to either cover-up with my Scentsy or get rid of by opening all the windows, depending upon if it's snowing.

But now, I have a new place lined up, thanks to the generosity of my aunt and uncle.  It is a lovely house and I am so looking forward to living there!  So put it on your calendars!  Moving day is August 31!

Cursed!

Sometimes, like now, at about 1:30 in the morning, I think being a writer is as much a curse as it is a blessing.  There I was, trying to sleep, and all I could think about was the ache inside me.  I knew if I didn't get my hands on my keyboard* soon I'd go crazy.   There would be no sleep.  Not yet anyway.  And I couldn't just jot notes in a journal entry or in my notebook.  That wouldn't have been enough.  No, I have to write about her.

Her is my newest character in the project I am working on while I wait for my teammates to work on and get back to me my book, The Keepers, as we get ready to epublish.  I am full of creative energy and I know I have to ride this wave because when my Muses offer their gifts, I must accept graciously; that's our relationship and it's just how it works.

Her name is Marni.  All characters that I write are me, in some shape or form.  In The Keepers, the main female and male characters are pieces of myself and the things they go through, even if you think the story could do with out some of the more graphic imagery, is out of my hands.  They are alive, organic, and purges of my soul.

I'm sure there will be some expectation that the sequel to The Keepers, The Leader, should be forthcoming, but I can't do it just yet.  I have to tell Marni's story.  Marni is maybe the closest character to myself that I've written to date.  Her book, entitled The Waves, is about breaking the blood-brain barrier and a pharmaceutical trial gone awry.  Marni is a lovely person: helpful to the elderly, giving and selfless, kind and generous, and a nurse by profession.  A pediatric oncology nurse.

But she is also a serial killer.

And she is filled with unquenchable desires, aches for needs unmet.  And she cannot and will not settle for incompetent or inadequate love or desire or passion or sex.  Her pain runs deep.  By day she gives everything she has to others in "Column A".  By night she takes away to fill the holes from those in "Column B".  She is demanding and requires my attention.

Do you see what I mean about this whole issue?  Also, a few notes at the bottom...

She is driven by the following:

The Holy Longing

by Goethe

Tell a wise person, or else keep silent,

Because the massman will mock it right away.

I praise what is truly alive,

What longs to be burned to death.

In the calm water of love nights,

Where you were begotten, where you have begotten,

A strange feeling comes over you

When you see the silent candle burning.

Now you are no longer caught

In the obsession with darkness,

And a desire for higher lovemaking

Sweeps you forward.

Distance does not make you falter

Now, arriving in magic, flying

And finally insane for the light,

You are the butterfly, and you are gone.

And so long as you haven't experienced this:

To die, and so to grow,

You are only a troubled guest

On the dark earth

I've heard people say things like oh, that writer just put that in for shock value or that writer didn't need to put that in, etc.  But if they are anything like me, they have very little control of the story and it really does tell itself and to take out parts that would "offend" some readers would be dishonest and in my case my Muses could clam up and become distrusting with their gifts.  The process is fragile enough.

*And by the way, as much as I tease and gloat with my family, this computer, my MacBook Pro, is the greatest blessing; I don't know what I would do without it.

My totem

I recently re-watched the movie Inception.  It's a terrific movie - ensemble cast, tremendously stunning visuals, and an ending that leaves you on the end of your seat.  It's one of those delicious pieces of film I'll pull out and watch every now and then because I just enjoy the acting, even though I know what's going to happen at every sequence.

All gushing aside, this last viewing brought my awareness to something that might actually help with the nightmares.  As I have complained on numerous occasions, I have horrible, awful, terrible nightmares that when I awake, and I sometimes still can't tell the difference between the nightmare and reality.

In the movie, the characters all carry with them special objects only they can touch, called totems, that represent to them reality versus the dreaming state.  The most iconic of which is the main character's totem which spins without toppling in the dreaming state and topples in reality (picture above).

My totem was so obviously the little elephant my sister gave me as a reminder of a trip we took together years ago.  It has grooves and ridges and rocks back and forth when initially set down on a hard surface.  I doubt I could reproduce this little elephant in my dreaming with the accuracy required and I'd always know if I was really awake or really dreaming.

My totem sits next to my bed now, ready to ward off the unwelcome, and welcome me back to reality.

What day is this? And who am I to receive such gifts?

What a day.  It escaped from me.  One moment I am waking up early with the dogs, taking my first pill of the day and the next moment is now.  That was sixteen hours of nothing.  And unfortunately that happens all too often when taking such heavy narcotics.  I remember when I was taking all that oxycontin a few years ago.  Days would go by and all I could really remember was falling asleep on the couch, playing "wake up, it's time to go to bed" (inside joke).  I went a saw The Simpsons Movie because I was not going to miss such an epic event and then when it came out on DVD it was like watching an entirely different movie; I could remember nothing of the show I'd seen in the theater.

I know I've talked about this before, but this was my day.  I just couldn't keep my eyes open.  I had such good intentions of folding and putting away the laundry I'd washed the day before, but I'd take my scheduled pain killer, turn on Hulu, and crash out until it was time for the next pain killer. And nothing could wake me in the interim.  Suddenly it was nine o'clock at night, heat bearing down on me, as I blinked my eyes open and wondered where I was, what time it was, and what day it was.

Days like this are profoundly disappointing.  But I was at least comforted by the fact that I had a few days of really stellar productivity and my house is super clean and even my bedroom is organized…

Also, I finally went to my doctor and we came up with a new treatment plan for my migraines, which will hopefully turn things around but can only go so far when one of the triggers is barometric pressure changes.  And I found out that in my fall of the previous week, the fall that has worsened my regular, daily pain, also resulted in a sprained ankle.  I had been ignoring it, hoping it would go away.  That never actually works though, does it?

I just keep comparing it to that one fall I had, when I fell down my friend's concrete flight of stairs.  I think I could have estimated a percentage of bruising on my body and really should have gone to the ER when my sister demanded it, but I didn't have health insurance.  Here's a link to that posting:

http://chroniclesofachronicpainpatient.blogspot.com/2009/09/legends-of-my-falls.html

There are so many great and wonderful things on my horizon.  I am publishing a book this fall.  And there are so many friends and family stepping up to help me do it.  It makes me feel loved and supported and like people believe in me.  Days like this scare me; I don't want to let everyone down.  Now I have a dear, old friend who has volunteered to be PR for "east coast operations"! Am I good enough for this?

There is one thing I'm proud of this weekend.  I made my dogs really happy.  My dogs got to hang out with a few different friends for theirs they adore.  And they got to play in the drain ditch on my parents' farm.  Here is a picture of some happy dogs:

I guess what all of this boils down to is simple.  When I spend entire days asleep on ice packs, even if they are driven by pain killers for very harsh pain, do I really deserve the blessings before me?  In my sleeping I dreamt I was running for a bus, carrying my fabulous laptop that cost more than my car and my phone, and so many other wonderful gadgets and wearing nice clothes, with a lunch of good and healthy food, etc.  And I passed a house where a family lived in extreme poverty.  And I stopped, didn't care anymore about my bus, and looked in on them.  I was plagued with the question: why was I so blessed and they were so… I don't know, the opposite of blessed?  What made me so goddamn special? In the dream I had no cash on hand to give them, no way to help, but I couldn't move on, I was stuck, staring at the young girl who would have no opportunities and I grieved.

I am so thankful, so grateful.  But when entire days go by, how am I showing this gratitude?  Am I really doing the best I can?  I'll try harder.  I really, really will.  Whoever reads this, to whomever this is addressed, Shiva, Buddha, God, friends, family, I will try.

A bunch of miscellaneous

Tonight the power went out.  I hate it when that happens.  It makes me feel lost and isolated.  And then I start a self-examining process on how reliant I've become on technology and devices and the internet.  Self examination.  Not a good thing when you are in pain.

I am in pain because that fall I wrote about a few posts ago turns out to be a little more than just some road rage.  For instance:

And my back and should and jeez, what else? are all messed up from that.  I may fall a lot, but that wasn't the typical fall I could just write off and move on.  And the migraines don't seem to go away.  They are better in that I don't wake up with them and I am getting way more time during the day to be productive, but I am still getting stuck with at least one a day that knocks me out for hours and hours at a time.

Then there is the issue of where I live.  At first I loved my apartment because I turned it into my home and I loved living alone again and I just loved having all this independence.  But it has been hypothesized, and it makes perfect sense given how sick I've been since I moved in, that my apartment is making me sick.  I may have mold.

But there is a chance I may be able to move into a new place and I am hoping something works out for me to not live here any more.

And now something really amazing that knocked my socks off in how important it was and how small and simple.  The other day I was at coffee at my gram's and my aunt's were there.  One of my aunts suffers from a condition that leaves her dealing with horrible, chronic pain.  Her doctor recommend she go on the Duragesic patch.  And so we talked about that.  We talked about the upside, no highs and lows.  We talked about the downside - how is tears your skin up so abominably.  Then she said something that I could relate with so perfectly, she said with the patch you wouldn't be lying in bed, teeth chattering, waiting for your pain killer to kick in.  Just having someone get it was so amazing I almost cried.

Last thought, but not least thought, I now have three people reviewing my book, and I have say I am most nervous about my mom reading it.  If they made a movie out of it, rated R.  And while I know I am my own worst critic, I worry it isn't as good as some people have told me.  Every character I wrote is some form of myself.  This entire book came from a dream, a gift from my  muses.  And so I torture myself, as all writers do in pure neurotic fashion, is it good enough? am I good enough?

Wait one more thing.  I'm worried for my dog.  I know I'll need to buy more medicine for myself after my doc appt for the out of control migraines on Wednesday, but I think I need to get her some medicine as well.  And I just don't have all this in my budget.  I really could use an infusion of cash about now.  Anybody want to buy a novel? :)

"Our Endless Numbered Days"

I begin this post by borrowing the title from Iron & Wine.  There were a whole lot of things I was going to write about about.  I was going to write about how on the one day when I didn't have a migraine in the last six or so days I finished all the edits and rewrites on my book and it's now in the hands of some readers, getting it closer to that publishing deadline.  And then of course I was going to write about the depression and misery of having nearly a week of migraines.

However, tonight I am super medicated and I have pictures!  At around seven or so I was sitting in my apartment, thinking that I hated it passionately, and that I was lonely, and that I was letting my dogs down, again, and I cried for a minute or two.  Then I thought, well, "sober" or not, we were going out, we meaning all three of us, Libby, Sully, Brook.  I didn't care what my pill combination was or had been, we were getting the f--- out of the house.

All I have to say is the phrase "load up" and Sully is raring to go.  Got the doggy bag ready, which in retrospect will be better when I find a backpack instead of using a reusable grocery bag because gallon of water and sundry doesn't ride well.  The neighbor's kids were cute and told me, "Uh, oh, your dogs are out" meaning they were out in the front yard.  I told them I was taking them on a trip… at least I hope I said that.  I'm fairly sure I wouldn't have said, "we're getting the hell out of here" to small children.

My dad drew me a map to the place he likes to go ride his mountain bike.  Here are some pictures.  The air was divine, the road-rash worth it, and the dogs are passed out cold.  They learned a physics lessons.  Running down steep, steep inclines is by far easier than running up steep, steep inclines.

An inauspicious beginning, but keep going (that's what I did)...

Blessings and continents

A year ago my friend from years gone by (we're talking debate team at Boise State, the undergrad years) married an Indian man and somehow his cousin became my friend on Facebook.  I've enjoyed chatting with him for the past year or so, it helps him with his English skills and I learn about a place I desperately want to visit (even if you have to bring your own toilet paper, hey, that's what my friend said after two visits to India).

My friend is 20, studying engineering, and has high hopes of coming to the States to live some unrealistic, where the hell did he get this idea?, vision of "the American dream".  He always tells me America is so great, we are #1, etc.  Tonight, I had to disabuse him of his notion, just a bit, because this is a subject his has brought up on quite a few occasions.

I told him the dream of McMansions and larger than life HDTVs and giant, unnecessary SUVs and such is actually crumbling.  I told him about where I live and the poverty of this community.  I tried to be sensitive, assuring him I couldn't compare or understand the poverty of his country or any developing nation, and that I know I am blessed and I am humbled by my many blessings I receive living in this country, but I'm not sure how it was received.  I told him it was my opinion that my country should spend less time fighting wars and more time taking care of people on our own soil.

But how do you explain to people who see so much worse than you do, that while you may be blessed and humbled, your country is flawed?  How do you speak truth?  Or do you?  I don't want my friend to come here and suffer bitter disappointment.

At the same time, how can I express my gratitude, my understanding of the blessing of social security and medicare?  A year and a half ago I held little hope.  Now…my life has changed so much gratitude doesn't begin to express it.

Tonight, more blessings were heaped upon me: I got to spend quality time with my brother, my mom made me fabulous green drink and loaned me a fan, I played with my dogs in the house because the heat never abated, and I enjoyed a cool shower with lovely smelling bath products, oh and wait, I forgot about the watermelon I consumed, um, yum, yum yum!

Last night was unmitigated hell with the hours upon hours of fireworks and doggie freakouts.  But today was peace.  So I guess that's the bottom line.  How do you share the idea that blessings come, and sometimes they are transient, but you can't count on what is advertised, you have to look inside.  There you will find them, and actually continents have very little to do with it.

"Good news for people who love [good] news"

A little play on the title of a Modest Mouse record expresses my giddiness at having appointments scheduled at the University of Utah Pain Clinic!  Hurrah!

On August 5 I will first meet with an MD and a physical therapist at 8:30AM and then at 9:30AM I meet with a psychologist.

This isn't just good news, it's great news! And although it is a month away, it is just so hard to wait!!!