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!!!

Narcotic fueled nightmares

This is a subject that I'm sure has frequented this blog.  But after last night and this morning, with how horrible nightmares and how hard it was to drag myself to a family dinner at noon, I just had to write.  At least when I was sleeping next to my husband I could roll over, touch his back and confirm that this was indeed reality, not that awful dreamworld.

I tried sleeping with the dogs.  Oh heavens.

Sully takes up the whole bed.  You know how she lies on you and thinks she's a lapdog on the couch?  Yeah, that's how she is in bed, but diagonally. That's a lot of dog.  So you have to sleep in the fetal position in one of the corners.

Libby is sweet and sleeps in a ball, but unfortunately it's near your head and she is on high alert all night long.  And between the two of them, they shed. And the dog farts.  Bloody hell.

Other than that it's wonderful.

I learned that we have nightmares in what scientists refer to as the fourth level of sleep, once our brain has emitted a subtle chemical that tends to paralyze us so we can't act out our dreams.  I just wish that narcotics didn't have this side effect of brining out the worst in my psyche.  Sometimes sleep is torturous and I wake over and over drinking my own tears, feeling them run down my neck into my ears.

"Bears, beets, Battlestar Galactica"*

This week it's been all about writing, sinus infection, summer.  I looked at this blog and realized I hadn't written in a week!  But the week has gone by so quickly, how could I?  I promise, the days had to be shorter than other days.  This may be in part to the three things I listed.

Writing puts me in a unique zone in which time and pretty much anything else is irrelevant.  My poor dogs.  They have to jump on top of me, stand over the computer screen, and demand attention.  I can't say I don't love it.  Honestly, this is one of those things I live for, thrive on, crave.  And I am one chapter away from being done with my edits/writing/overhaul, so get ready team of readers and editors! :)

Oh, the miserable sinus infection.  It's cutting into my writing time because I am so bloody tired!  But today I am blowing my nose and stuff is coming out again.  I'll leave it at that because I know there are some squeamish types out there and really just my bestie would appreciate the details.

And ah, summer.  All my windows are open; the breeze is so wonderful I could cry in appreciation every time I feel it.  I survived another winter!  And I can play with the dogs without worry the Frisbees will get taken away be the wind and never seen again!  We actually have to wait until morning or evening to play because it is so warm black dogs have a hard time cooling down in the heat.

Anecdote:

Yesterday there was the HUGE truck sitting outside my house for apparently no reason.  And soon my house was filled with exhaust and I was coughing and miserable and the "Sasha Fierce"** in me was like, "oh, hell no".  So I went outside, motioned for the driver to roll down his window and said, "Your vehicle is filling my house with exhaust.  Now will you please shut it off or move along?"

He was really taken aback, as was his passenger, but the passenger got out and the truck moved along.

Imagine me thumping my chest just once and saying "This is my house."


There is just one more thing.  My primary care doc here in Burley got a call from one of the docs at the University of Utah Pain Clinic.  What it means, in a nutshell, is that my file isn't just sitting on some desk being ignored in a pile!  Excitement!




*If you didn't get this reference, I feel bad for you.  Look it up on YouTube (the phrase) if you feel bored.
**You better have gotten the "Sasha Fierce" reference and if not, just look it up on Wikipedia, I suppose.


The second picture is of my aunt's/cousin's water feature.  Gorgeous, eh? 

Humbled

Right when I was considering writing another one of my BS entries complaining about this or that, blah, blah, blah, my dad sent me a link to a blog of a man he works with keeps.  The home page tells his story.  I was so moved and humbled, I felt I had to share it here.

Here's the link:

http://tomnichols.webs.com/

This man was in a dynamite explosion accident as a teenager; in the end one of his legs was amputated just below the knee.  The story he tells on his home page is not too graphic, but he has a photo gallery that might be for only those who find that kind of thing interesting.  He seems to have a great sense of humor because he has another photo gallery devoted solely to pirate cartoons.

What really got to me was that 30 years ago in Rupert, Idaho, pain control was not that advanced.  He describes getting shots of morphine, but now there are far more effective pain killers and it would be standard procedure to flush them through an IV or provide the patient with a drug pump where they can press the button and every 10 minutes they get a dosage of whatever medication (typically morphine, dilaudid) is in it.  I think it is the disparity in care I received/receive for my pain and what he received is what really got to me about his story.

When I awoke from my surgery all I could do was wimpier about the incision/surgical pain and it took a long time to get it under control.  I was getting shot after shot of Demerol flushed through my IV (which, if done too quickly makes the IV site all hot and achy).

But what care!  I was given IV medications, sent home after taking oral pain medications, and was written scripts to get even more medications.

Once again I have perspective.  This week I think I finally fixed the patient records issue with the University of Utah Pain Clinic (turns out the issue was some over-zealous employee was just cleaning house).  And instead of feeling like I can't catch a break and I have no end of hardships, I just feel grateful.  Grateful for modern approaches to pain management and grateful for the opportunity (Medicare) to receive it.

Sunshine begets seratonin begets happy

KNOCK ON WOOD.  The sun has been shining.  In this sun shininess, there have been storms, rain, and wind, but the sun continues to shine each morning.  I would really like to believe it is a trend because sunshine makes me so perfectly happy!

My mom and I took a trip to Moss's Greenhouse in Jerome and I delighted in the blooms and color and… you guessed it, sunshine!  I couldn't help but take pictures of some of my favorites.

And PS lots of writing/editing going on, too.

My goal

It was 2AM some morning or other and a thought occurred to me.  This is really quite a bunch of bullshit.  My ongoing whine about my writing that is.  I am not technically in the writing phase on the book I want to publish.  I am editing.  And from there my thoughts tumbled quickly, and before I could back out in cowardice, onto "paper" or email rather and I assembled a team.

This is one of those rare times when I need help and I am going to ask for it.  I put together a list of people close to me with skills to help with further edits, motivation, website development and hosting, and Amazon publishing research.  And what a team.  They've already made progress.  And I've made some progress.

Important, because here's the deal.  I am publishing The Keepers by September 1 via Amazon.

Sighing loudly, and often

This isn't going to be a cheerful post.  Let's start with a warning.  I am going to complain about how much dating sucks and how much I hate being on pain killers but am so grateful to have them and then generally bitch and moan over the purposelessness of my life.

I broke up with my boyfriend, and although it wasn't necessarily a long relationship, it had been intense and for the last few days now I feel pinned down in the mire by an anchor of sadness.  Although I feel good about us breaking up, I still feel like shit, you know?

But even before than I felt a bit miserable because the pain killers make it soI can't write worth a damn.  I feel like anything I write is questionable and I can't stay at it very long.  Anytime anyone asks me what I do or if I work, I feel like a piece of garbage.

I'm down on myself because I haven't been able to play with my dogs when the weather has been really bad.  Like tonight.  I came home in time to make sure they'd get some time in outside playing Frisbee.  The wind that kept us inside earlier in the day had made way for pelting rain that made Libby not even want to go outside.  Yeah, and how is the weather my fault?  How do bad weather conditions, which constantly occur in the Magic Valley, make me a bad person?  I don't know, this is where my brain is right now.

But what really has me down is that the University of Utah Pain Clinic informed me (days and days after I'd called them) that my records had been shredded and if I wanted to be a patient there, I'd have to have my doctor resubmit everything and then have one of their doctors review it again.

What?  I just keep crying about that part.  It took months, but they finally had all my paperwork and a doctor had reviewed it and I had done their orientation and all I was supposed to have to do was get this stupid pump removed and then I would be ready.  Now how many more months?

Remember when I've written that I don't think I can take anymore? I'm back to being very close to that point again.  Wow.  My reserves run out quickly these days.

Noritake!

A few years ago I posted an entry entitled "Life's Funny that Way."  I was selling off, donating, giving, or throwing away, much of my belongings.  My now ex-husband and I were moving to Eugene, moving from a 3 bedroom, 2 bath, fenced yard in the suburbs for a life living with roommates, not in our house, but in their house.  This is a link to that post:

http://chroniclesofachronicpainpatient.blogspot.com/2009/06/lifes-funny-that-way.html

And after moving one…two… three… four times… and then after one more move, I have considered myself settled here in Rupert, Idaho.

I used to collect dishes of all kinds: jadeite, Mikasa vintage, Mikasa china, Fireking Lustreware, etc.  Then I gave all that up, and good thing because who wants to move all that crap over and over?

But then the other day I found my new set of china.  Have a gaze.  I'm in love:

Noritake Progression China Up - Sa Daisy

I cried when I found it and it's not because it's just stuff.  I cried because it means I get to host carefully crafted Thanksgiving and other dinners, teas, and make a cup of coffee special on a weekend again.  So now I have 37 pieces (purchased for the low, low price of $30).  May the collecting begin!

Goodbye vile staples!

Today I got my nasty staples removed, and not by me, by my beloved Dr. B.  He had a very cool tool that made it fast and completely painless.  He agreed to let me keep all of them and he took pictures for me.

And here they are…

Frisbee dogs/Good boyfriend

On Sunday the backyard "lawn" was mowed so now it seems like there is grass.  I got really excited because now that it isn't just a field of foot high weeds, we can play frisbee out there!  And wow, do these dogs need to get their energy out.  With me recovering from surgery and not able to bend easily with these miserable staples, I haven't been able to do anything with them.

Enter the wonderful, goes above and beyond, boyfriend.  He cleans my moldy coffee pot with vinegar, drives me around town when I'm sick and detoxing to find just the right food to settle my stomach, and now, he plays frisbee at length with the stink hounds.  And if you have ever played frisbee with them of even watched the process, you know it is a slimy, frothy, disgusting ordeal if you don't love the mutts like I do.  And yet he played with them while I was on duke patrol and then while I took a million pictures.  They were some tired, tired doggies.

One extra thing that was so great about the whole deal - those dogs moved faster than I've seen them move since last summer because they've really taken to him and they wanted to impress him.

Let's just say I was impressed.

More pics of the event… how can you not love him (and the dogs)?

Chill out, ya'll

So a few people have been a leeeetle worked up about me removing staples.  Especially in front of them.  While my initial thought may be "look away, pansy", I get that part.  What I do in the privacy of my own home however…

We can all agree to disagree.

But now I have an appointment with my beloved GP and he has agreed to take my staples out on Tuesday, May 24. So now no more worries, people!

Unless you count how many I pull out before then… ha ha ha ha…

"Hell to the no"

Last Friday under the worst headache possible I got a call from the evil surgeon's office.  She set up "the first post-op appointment".  I just hung up the phone, but as soon as I was conscious and could think without the accompanying avalanche of nausea, I got thinking, "first of"?  Hell to the no. I am not going back to have an appointment with the PA to have her look at my incisions and say, "Oh, those look nice, see you in two weeks."  Gas - Boise - Gas -Boise - Gas.  Hell to the no.   I'm hoping my wonderful GP in town will help me remove them. And if not, I'll just keep pulling them out myself… Yup, that's four… so far….

Bugger

I haven't really been blogging since my surgery because I've been sleeping.  There are times writing this blog when that is all I wanted.  Now I just can't stand it anymore!  Because it's not like I was wide awake and alert the rest of the time to begin with, before they doubled the Percocet!

The other day I had spilled dinner on my keyboard because I feel asleep eating it,  my car's battery wouldn't start (and like that mattered, I couldn't drive with all this junk in my body anyway), everyone was too busy, and I just wanted to go get some things done.  But I couldn't.  I couldn't go and do anything.

That was it.  I decided it was time to stop taking the extra pain medication prescribed to me after surgery.  That was at night.

Early, early the next morning I was hit with one of the worst migraines of my life.  I tried to stand to use the bathroom, but would inevitable puke before anything else.  The rest of the withdrawals came after…the creepy, crawly want to climb out of your skin feeling, the hot then cold then hot then cold, and all the rest.  

If it was liquid I tried to drink it, especially fruit juice.  But I ran out of that fast.  One of the things I really needed to do was go grocery shopping, but hadn't.  Finally, I slept. The next day started hard, but got better, much better with the help of a friend who drove me around so I could buy groceries and juice and frozen yogurt when I got hungry.

I've begun to think it might have been too early to cut out the extra meds since the incisions have really hurt.  But I am not back tracking now!.

The following is The Simpsons doing Ke$ha's "Tik ToK".  

I put it in because I will totally feel this way soon!

Surgery!

I didn't write a lot up to and immediately after my surgery that removed my pain pump.  I had a birthday in there; it was fabulous.  I've had the love and support of my family; it has been wondrous.  But I still don't have a lot to to say just yet because I'm having a lot of surgical pain from the incisions and the staples really hurt.

The bandages were bothering me so I just took them off and have been going bare back with only the bacitracin from the hospital.  I can shower, I just can't soak (i.e. not baths or hot tubs).  Since it really hurts me to sit up and type like this, you just get the details and some pics.  The surgeon talked to my mom while I was in recovery and said he had been able to remove everything, including all the catheter (hooray!).  When I woke up in recovery all I remember was being in worst possible pain level like of pain.  Like were they still cutting me open right there?

So I mostly take drugs and sleep.  Below are pictures of my incisions.  Enjoy!

The above picture is of my side incision where the pump was removed.  I have no idea what the purple-blue lines are for that they drew on there, but all those little staples really freaking hurt. And there is this weird indentation that you can start to see where it shows the pump's void.

This incision feels much angrier than the front.  It also feels a lot more bruised.  I think by now I've finally been able to wash all the gunk off that was around it.  But it still is not as "nice" looking as the front.  But then again, it's harder to see in the mirror. 

Countdown!

Just one more week until my surgery!  These last three weeks have been some of the longest of my life!  My pump is alarming way more frequently these days and it is just so stinking annoying - and loud.  I will be so grateful to have it out.  This time next week the surgery will be over, I'll be a bit drugged and tired, and my mom will be driving me home.

One more week!

Just breathe

My chest hurts.  I've been having a hard time breathing.  I've used my inhaler and my humidifier is running.  But I still keep waking from nightmarish dreams with a tightness in my chest that not only aches but scares me when I can't get a deep breath.  I don't need to see a doctor, call an ambulance, turn up at the hospital.  If they hooked me up to one of those cool machines, it would show my blood oxygen saturation at normal levels.  What I'm experiencing are panic attacks.

Earlier I was lying in bed, attempting sleep, when it hit me, seemingly out of the blue.  I couldn't breathe.  My chest was so tight I thought for sure I was going to pass out before I could ever get enough oxygen.  I sat up, tried to drink water, wished my inhaler was a rescue inhaler instead of a preventative inhaler, and then, when nearly hyperventilating and sobbing, I started searching for a Klonipin. It wasn't asthma or bronchitis induced breathing blockages, etc.  It was anxiety and it was out of control.  And worse, I was completely out of Klonipin since I had decided I was already too drugged and didn't need anymore sedation and decided not to get a refill.  Needless to say I was kicking myself, hard.

I started petting my dog, who had come to sit by me with a look of concern and worry on her face.  I forced myself to breathe in and out deeply and slowly.  I repeated a mantra, "you are okay, you are okay."  It worked and I calmed down.  But like I said, I keep awaking from these terrible dreams, gasping in terror, with tears streaming down my cheeks.  In my dreams I have no voice.  I cannot say what I desperately want to say, cannot shout and yell when that's all I need to do.

I think it's because I've been processing so much lately.  There have been some pretty big changes in my life, especially my social life, and there are more on the horizon, like my surgery May 4.  And even though I tell myself these are good changes, they still scare me and I resent them.  I even obsess about my pump, touching it often, thinking of how I will miss it (even though I hate it) once it is gone.

The adult in me says to toughen up, refill the prescription, and get through it.  The scared little girl in me says to not refill the prescription because all of the fear and anxiety that crushes my chest might mean something and I'm really an escapist at heart, even when I know something is good for me, even if I know rationally that I want it.  I'd rather escape as the scared little girl and run away than face the fear and reap the reward.

I will of course go through with the surgery, despite the looming fear of another spinal headache.  But what if I just dropped every other thing in my life that scares me - my writing, my new and improved social life, the way I've found myself reaching out to others in a way that might defrock me of my misanthropic status…? What if I just crawl back into myself and burrow deep into the alone I love and go back to rarely leaving the house or interacting with others?  Wouldn't that be nice, more desirable?  What if  the price I must pay for personal growth is facing another demon: my own obstructionist conscious mind?

This whole experience has made me mindfully grateful of prana, or "life breath".  I must breath it deeply, and make my choice.

All about my pre-op appointment!

By now I may have already called you and shouted my good news into your ear, but just in case you are reading and I haven't or you didn't get my detailed, play by play, action packed version, this entry is for you…

As I mentioned in this blog previously, I had a pre-op appointment with the surgeon who put in my pain pump yesterday.  Pre-op as in I want surgery to get this useless, treatment preventing, P.O.S. out!  My mom drove me to Boise the night before and we stayed with my grandparents.  That was wonderful.  I don't get to see them enough and we got to visit all evening, have coffee early the next morning before my 9AM appointment, and then have brunch after the appointment.

I dreaded the appointment.  I hadn't slept much in days and days and days.  I was running on E.  But my mom was there.  So I knew I would be okay.

The office was pretty deserted when we arrived.  I filled out paperwork, we were brought into a tiny exam room, and saw the surgeon's P.A. fairly quickly.  I explained why I wanted the pump out, she wrote it all down, and left.  Then we waited.  And waited.  And waited for the surgeon.  When he finally came in he just opened the door and sat down on the exam table without saying a word.  He read my chart and then said, "This all looks doable."

I breathed a sigh of relief.  I looked at my mom, who was recording the appointment, and we both held the same expression.  He went over a few options in case I wanted to keep the pump and I said no.  He also explained that he doesn't put in pumps anymore because they found the pumps just haven't had the success they thought they would.  Now they just use them for cancer patients who are at the end of their lives and need massive dosages of pain medication.

He said it would be a simple, outpatient surgery and because of this, I could get schedule in about two weeks.  At this point I think my mom and I were bursting trying to keep in our joy; we thought it would take months to get in since it had taken months just to get the pre-op appointment.

The surgeon explained there are a few possible complications.  Because the catheter would be removed from my spinal column, there is a distinct possibility I could leak spinal fluid and have another spinal headache.  If so, more blood patches and if that doesn't work, very serious surgery to repair it.  Another possibility is that a piece of the catheter could break inside me and if that happened, they would just leave it.  They have found it doesn't hurt me and trying to dig it out causes more harm than good.

At first I was really worried about the possibility of another spinal headache.  I don't think I have experienced anything more painful, more awful than the month I suffered through that.  But then I got thinking.  The catheter isn't in my spinal column.  It's stuck right outside, held in place by scar tissue.  I might be just fine!

When the appointment was over, and we were in the elevator, my mom and I high-fived and got our happy dance on.  In the parking lot I shouting and danced.  I get to have my miserable, constantly beeping pump taken out!  And soon!  This feels miraculous.

And he was decent and professional.  Probably because my mom was there.  He was arrogant and his bedside manner left much to be desired, but he was decent enough.  I had been so worried about him being mean to me again.

Here is the other part that feels miraculous: I'm not angry anymore.  I'm fine.  I don't feel the need to confront him or tell him he ruined my life.  I don't even feel like he ruined my life anymore.  I feel like a huge weight has been lifted and I can breathe again.  I was able to face a huge fear and come out the other side braver, stronger, and better for it.  I feel peace again.  Last night I slept better than I have in weeks.

On the way home from Boise I got a call from the surgeon's office.  My surgery is scheduled for Wednesday, May 4 at 6AM.  I couldn't be happier.

Happy anniversary

In front of Multnomah Falls.

Someday I may not feel so much, dwell so long, or think so hard about today, my wedding anniversary.  But today is not that day.  And yet today I feel peace.  A tinge of regret and sadness yes, but mostly peace.  I was able to have a wonderful conversation with my ex-husband last weekend and now I feel freer than I ever did before.

And I'd like to dedicate a song.  And no, this isn't seventh grade I realize.  But it does have deep meaning to me.  Consider the following lyric;

"...In each other's shadow we grew less and less tall/ till eventually our theories couldn't explain it all…"


Here is a link to Ani DiFranco's "Both Hands"

http://www.youtube.com/watch?v=RnJ4Z74N1So&feature=related

Panic

I am supposed to go to Boise Monday evening for my Tuesday 9AM appointment with the vile surgeon who botched my pain pump.  He is the only one who can take it out.  Monday is April 11, what would have been my 6th wedding anniversary.

This is too much.  I just don't think I can do it.  My gram and I had a talk about this appointment and about her cancer treatments, her radiation.  She got all tough sounding and said these are things we have to do, we have to get through, and that we will get through.  And I'm trying to draw strength from that, from her.

But it is just too much.  I just don't think I can do this.  I don't think I can face this man.  I think I will just cry.  And then I will feel ashamed.  And that's the last think I want to feel with this jerk.

I think back to the month after my surgery and that horrible, awful spinal headache.  It is the worst pain I've ever had in my life.  I almost want to have a baby sans epidural just to compare the two.  I think about all of this and I get angry again.  Maybe I should stay angry.  But I don't like that place and I don't like feeling that.

There is a song I really like right now, and maybe I've mentioned this before, but it bears repeating.  A lyric is, "I'd rather hurt than feel nothing at all."  I hear it and always, every single time, think, "Wow, you have never really hurt before, have you?"  Because trust me, if a person had hurt like this, they would feel like me and want to numb out as quickly and as much as possible.

PS I realize that my posts have been extremely moody and up and down, up and down.  I am doing a lot of processing right now.  This particular thought woke me up a couple of hours ago and I can't get back to sleep.  So I am spending less time admiring my pretty nails just now and more time stressing over upcoming events that I want very much to change.

Gleek out

Today I am choosing to screw around instead of doing something urgently needed like cleaning my house.  Nope, instead I am working on playlists in iTunes and painting my nails with my Glee for Sephora by O.P.I. nail polish.  I am currently sporting "Celibacy Club," a very sparkly variety that will compliment the outfit I've picked out for later.  In a few minutes I suppose I will get in the shower.  I'm killing time because I'm meeting a new friend for coffee (even though I've had some at Gram's this morning and it's more than I usually drink).  Oh, and later I hope to play Just Dance 2 with my mom.

I'm writing this nonsense, about how I like Glee enough to put it on my nails and how I'm not doing anything useful, because I'm just having a good day.  That seemed to warrant a post.

 PS I don't know if you can see it, but my nail polish featured above is just so sparkly! 


PPS For those who are not full-fledged Gleeks, the loser sign = Glee.


PPS I'm reflected in the nail polish picture!

And it's already a new day

It is now after midnight on April 8th.  It's still five years after my crash.  But my day of infamy is over.  And it wasn't a bad day.  I did some writing/editing.  I gave the dogs a bath (and then cleaned the bathroom top to bottom) because they stunk so bad from the drain ditch I couldn't stand it.  I cooked myself a lovely meal of tilapia, quinoa, and baby green salad with dark chocolate and strawberries for dessert.  I spent only a little time thinking, "if only I'd turned left".  Yes, it wasn't a bad day.

5th Anniversary

A preface: this blog is my free therapy and today I might use that therapy and whole lot…

Today marks the 5th anniversary of the day of my crash. My day of infamy.  It is still so vivid, except the ride to the hospital and the time in the ER; I felt kind of out of it then.  I know I cried a lot and kept falling asleep.  Maybe I'm just blocking it out.

Next week I have to go face the surgeon who put my pump in wrong and deal with him to get it taken out.  The good news is once it is out I can go to the University of Utah clinic.  But to get to that point, I have to go toe to toe with my biggest demon - my conception of a ruined life, and the man I believe caused it.

I believe if my pump would have been put in correctly, I wouldn't have lost my career, my home, my car, and then eventually my marriage (because it would have been strong enough to get us through the tough times ahead).  And yes, I have looked into a malpractice suit, but in Idaho it's basically ridiculous to try; I've spoken to two attorneys on the subject.

But here's a new concept: this has been my identity for five years now.  The physical and mental anguish started five years ago today and I've worn it like a suit of armor.

And yet… now I find myself talking about it, gingerly and tenderly, but talking about as if maybe I'm ready to drop the armor.  A friend referred to all of this as a five year setback.  Obviously it is so much more to me than a setback.

However… if you stand back and look at like a Monet, you can see the brushstrokes of my pain make up a drop in my lifetime.  If I live to be 80 years old, five years is only 6.25 percent of my lifespan.  Maybe I could start considering the idea of a setback, and the idea that in the process what I've gained in strength, humility, and patience* might be as great as what I've lost.

It doesn't mean the mental and physical pain ends today.  Of course not.  And of course my former life is still over and I will still grieve for it - I must until the grieving is done.  But even as I was awake in bed, watching the clock turn to midnight to ring in this day of infamy, crying and sobbing, I knew there was a good chance progress with my treatment, social life, writing, and independence might carry me through the day.

But there might still be a few more post today…

*Still working on all of these things…

Here are some things that I miss:

Sleepy

Last Friday I had an appointment with my doctor.  Someone had pointed out my muscles spasms to me and I started paying attention to them.  They had actually become kind of bad and were possibly making pain worse.  So I got some muscle relaxers to try out and since my old pain killer wasn't doing it, he prescribed a higher dosage for me.  Between the two, I feel I've done little but sleep in the past 72 hours or so.  The combination of those two drugs have knocked me out!  But I suppose it's like every other time.  I adjust to the dosage, slowly, taking sometimes a week or more.  And then, it's like a low-grade tiredness is just part of how I function.  At least I can report that I do feel better today than I did a week ago.  That's progress of some sort?

Missing out?

Today my family planted trees in the yard.  Not just any trees.  Check out this picture:

They were some huge, freaking trees!  And they rented earth-moving equipment the trees were so big!  And had to haul them on a flat bed!  We missed the family BBQ.  The tree project took all day and into the night.

And I say "we" I mean "them" because I went out once to let the dog off her leash and fill her water, and then I went back in.  I made hummus, maybe that was helpful... I do think I make good hummus.

But here's my deal.  I always miss out of these miserable, "in the wind and cold, gives you nothing but character" (okay, and the benefit of trees, in this case) projects.  Sometimes I insist that I participate.  And then sometimes I pay for it with extra helpings of pain later.  Sometimes I am glad I am out of it, like today.  But then I realize, I'm not really a sidelines kind of person, even if it is nose-numbing and fingers-freezing-off cold.  I should be out with my family, enduring it with them, and growing tougher and closer to them, for it.

Catch-up

I'm writing about pain a lot because (a) I'm in it and (b) this is a blog about pain, after all.  Today's pain topic is about catch up.  Right now I am in a world of pain.  Six hours ago I was not.  This is is because six hours ago I had taken pain killers a few hours earlier and they were in effect and all was well.  Now I've slept them off (after staying up late catching up on episodes of Parks and Recreation).

And now I need to eat something that is approved by my stomach (AKA I won't puke up because these medicines are harsh).  Then I will take the pill.  Then I will lie here for about 45 minutes and wait, unable to sleep again until it kicks in again.

So there is this whole window of time where there is severe pain on the pain scale because you are playing catch-up.  And sometimes, the regular medication regime doesn't do it.  And I don't even want to go into that.  That is why I have a doc appt today...

Pain is boring, part duex

Yes, I am aware I've written about this before, but in three years or so of blogging, I'm bound to repeat myself.  Or in my case, become a broken record.

Today for some reason, pain for me came to a climax.  I didn't really sleep, I've been taking lots of pills all night and day, and finally, during the day I've been sleeping a few hours after each pill.

But I have to stay in a specific position with pillows to stay in the least amount of pain possible and it limits what I can do.  And it means what I do gets boring.  I want to be sitting up writing!  I am so excited to be at it again.  Instead, I work a little, as much as I can do, and then stop and get back into my comfortable position.

Bright side: doctor appointment on Friday, I have a doctor at all, I have access to medical care via Medicare, and I am back on pain killers.  But bright side or not, pain is so very boring.

Writing

I have been writing creatively (short stories, poems, novellas, novels, etc) since I was in the seventh grade.  During that time I have had ups and downs, times of prolificness and times of wasteland.  I've experienced every mood a writer can go through as she attempts genius.  My mom once commented on hearing Beethoven and knowing I was writing.  Very moody, heavy stuff.

For the past few months I haven't been able to even open my book, The Keepers.  I've had such a hard time even thinking about it.  I have some theories, but I'll try not to ramble more than usual this afternoon.

But today I cracked it open and started editing.  I was afraid it wouldn't be as good as I thought it was months ago.  But it is.  I thought I wouldn't like it because of my association with it to a friendship gone awry.  But I was fine and in fact, reading and editing and writing made me stronger for it.  I thanks the Muses.

I was just thinking about this...

I've been trying to figure out how to get over my horrible writer's block, or what I've come to know as my writer's constipation.  I was thinking the answer lay somewhere in the past and I considered confronting it (cryptic, I know, but go with me) but then I read my Freewill Horoscope.  Check this out:

Taurus Horoscope for week of March 24, 2011

If you're thinking of calling on a ghost to provide you with information, make sure you know how to banish it when you're finished milking it. If you're considering a trek into the past to seek some consolation or inspiration, drop breadcrumbs as you go so you can find your way back to the present when it's time to return. Catch my drift, Taurus? It's fine to draw on the old days and the old ways, but don't get lost or stuck there.

My road trip

This past weekend I went on a little road trip to see my bestie in eastern Idaho, go to my grandpa's birthday party in Brigham, UT, and then visit my brother's family outside Salt Lake City.  It was a marathon of driving, but worth the pain I am in now.  The great thing about my doctor is that when I called him to tell him the meds weren't doing it because of the road trip/time spent in the car, he didn't lecture; he just said to take a different  dosage.

Here are some fun moments:

I played "Just Dance" with some of my favorite favorites! 

My Grandpa at his birthday party. 

My niece showing me her silly face.

My niece and her grandpa having a balloon war.

My two nieces: Big Sister and Baby Sister - and Big Sister loves her Baby Sister.

The unbelievable breakfast my brother made for us - yes, that is a caramel sauce he made.

My brother holds Mary as she uses an exercise ball as a trampoline.

Me holding my new niece.