Normally, I'd probably post something like this on my private blog but my pain therapist has been encouraging me to share more of my journey with people - regardless of what that might look like.  So, in order to try to get my head and heart back together and find some sort of equilibrium again, I thought I'l write.  I wish I could use my dictation software but unfortunately, my cough and the acid/vomiting has been back again tonight with a vengeance so I'm on CPAP with all the anti cough meds I can take.  So, the face mask nixes the ability to use the voice software.

More surgery details

I said I'd expound a little on what they said in my last thoracic consultation that was a little disconcerting so, here it is...

I knew about the "Thoracotomy" or at least thought I did but there were several pieces that I didn't know.  I'll have "chest tubes" hanging out of my incision draining into some little boxes...then when you're healed enough, they just "pull them out" through the incision.  Definitely something to look forward to...*eyes roll*.  Then I found out they will be doing an epidural that will remain in place for some undetermined amount of time with pain meds being pumped into the epidural space.  The pain relief idea sounds good, BUT last time they so much as did a lumbar puncture, I had the horrible spinal headache complication and the EDS puts me at very high risk for that to happen again.  It's just common with the weak connective tissue.  So I already let them know about the blood patch and they might have to do that since it worked for me last time.  I'll of course have heart monitors on, but didn't know I'd also have a catheter as well.  Never had that and am not looking forward to it.  I think they'll wait until I'm knocked out before they do that though.  I didn't know that the ongoing pain from a thoracotomy can be so prolonged either.  They may still have to cut through my ribs and remove a part which I didn't like the sound of and hoped we'd avoid.  And that isn't even beginning to get into the airway repair itself.  Sounds like lots of bronchoscopies loom in my future as well.  They also may have to work down into the lung(s) themselves in order to attempt to support the lower airways as much as possible.  I won't list all the possible things that could happen with that.

I find myself in a sort of surreal moment in time.  I never saw a surgery like this happening in my life but I suppose no one ever does.  So now I have two days to try to enjoy time with Steven and NOT think about the hellish procedure looming in the no-longer-distant future.  I'm also trying to relax, be at peace and visualize a positive outcome.  I had distilled my feeling down to four words (in this order): peace, apprehension, curiosity, concern.  Overall, I've been peaceful about this knowing that it's the right direction and by process of elimination, the only direction, currently.  Apprehension, because they're going to do a lot of cutting, moving, sewing, tailoring, repairing, reconstructing, poking, prodding and such and I don't think anyone likes the idea of that.  Curiosity, in that there are a lot of unanswered and unanswerable questions that will only be known from trying this and hoping it works well.  Concern for Steven and my intentional family while I'm going through this and all the changes it could mean.  This has all been made more difficult by some major screwing up by the hotel and causing things a lot more stressful...too long of a story for now but things are definitely not sorted out.  *sigh*  One thing after another.

My challenge and goal is to get back to that place mentally and emotionally. If I can, I guess I'll be in a better place because I'm now even more informed about what they're going to do so there will be less surprises.  I don't like surprises on things like this...I'd rather prepare myself mentally for the worst scenario and then be happy if it isn't actually that bad.  Here's hoping that's the case.  On to the waiting game through the weekend. 

Invisibility

I walk in a room

where friends abound but

no faces turn to greet me.

I'm not avoided

but politely ignored

almost as though I were invisible.

Or they wished I were.

It would make life easier

for those who care

if I could or would disappear.

No pain to see

no struggles to bear

with a friend who's overwhelmed.

My dreams of changing the world

of making it a better place

have slowly vanished.

Replacing them are lofty hopes

of waking up each morning

and trying not to cry.

I've become a burden

on those I love most

taking instead of contributing.

I feel useless.

I don't know if I'm wanted any longer

by people I've thought were close friends.

Maybe I'm not enjoyable to be around anymore.

But it's an interesting view of life

for those in pain

and who are challenged in different ways.

The world isn't an easy place for us

we're purposefully overlooked

and conveniently not seen.

I suppose no one wants to be reminded

of the darker sides of life...

and what can happen to one person

can happen to anyone.

For some, maybe that's just too much to bear.

So those of us who have to fight to want to stay alive each day

we become either a spectacle to onlookers or simply

invisible.

I sit alone in solitary confinement

in a prison of constant pain.

Family and friends look on in anguish

and tears roll down our cheeks.

They reach through the bars

to touch my hand

to remind me they're still here.

We all look for a means of escape

but hopelessness overtakes.

Key after key fails to unlock this cell

and the bars seem to grow stronger

slowly cutting me further off

from life and those I love.

Expect a miracle

Yesterday, I did something kind of out of character for myself. I flat out said I wished someone would buy me a piece of jewelry. Not just any piece, mind you. One I had seen the day before that wouldn't leave my mind. It's a bracelet, a silver cuff bracelet that has inscribed on it: "expect a miracle" I really wanted to be able to wear it all the time and only have to look at my wrist to be reminded of it. There are so many health issues I'm dealing with right now that I find myself easily overwhelmed and fighting on a moment to moment basis to keep my head above water emotionally. When I mentioned it to S & C, they both instantly wanted to get it for me and a short time later, I was wearing it, all polished up, with those simple words staring back at me from my wrist.

I have this hope in me that, perhaps, this reminder I now wear continually, will help me in those all too frequent times of struggle.

But this led me to another question...what defines a "miracle"? Will I only be satisfied if the "miracle" is a complete, instantaneous, genetic reengineering of my genetic code with new airways, vertebrae, and connective tissue? Well, of course, who in my position wouldn't be satisfied that? But maybe it isn't just about that, and maybe it isn't just about me. (*shock* *faint*) I know, what a concept, right? It's so easy to overlook the miracles that God does for me everyday. The fact that he's given me a spouse, partner, best friend to walk with me tirelessly through all of this and who, for some unknown reason, continues to love be despite all of this, is a miracle. The fact that's He's given me a community of friends who have really become family and who continue to support me, believe in me, and be there for me, is a miracle. The fact that I'm writing this from the porch of an amazing house in North Carolina on the beach on a vacation that was a complete gift to us from some of those friends just so we could have a break, is a miracle. The fact that I have a top medical team from Anne to my doctors at Harvard, and that I have such favor with them, is a miracle. The fact the God is connecting me up with another person who's gone through similar struggles due to EDS is a miracle. The fact that He's given me strength, moment by moment, at times, just to stay in this life during this time, is a miracle. The fact that time after time, when I should have to wait months or even a year to see a doctor, he gets me in in literally days or weeks, is a miracle.

I guess it comes down to what CS Lewis said at the beginning of his book "Miracles". (my paraphrased version). Those who don't believe in miracles will never see one...they'll always attempt to explain away any happening that's unusual as a "trick of the light" or a simple "coincidence". But those who are looking for and expecting miracles WILL see them and won't be disappointed. So, I want to start looking for and seeing the miracles He does for me on such a frequent basis. I know that, in some sense, the "Pollyanna" concept is a flawed one in terms of expecting a perfect almost "princess like" life. But I don't think that was really what was going on in that book. She was taking otherwise difficult situations and finding ways too see the good in them and for me, I think I need to go back to seeing the good more. I mean, it isn't as though I'm not trying to do that already, but maybe this renewed hope will be a positive start.

I don't expect to not have struggles with all of this. I don't expect to not have to adjust my life, my thinking, my expectations of myself right now to match what I'm going through. I don't expect to not have to be "gentle" with myself (a concept I find MOST difficult). But, if I can make those adjustments right now, with His help, then that's a miracle. If I come to a time later when I can become more like my "old self" then that's a miracle. And, if I can find a way to look for a "new self" to become, instead of mourning the "old self" that I can no longer find...then that is also a true miracle.

This is my aspiration. I certainly don't expect to do it perfectly. And if I can come to that realization and truly incorporate into who I am, that will be an absolutely amazing miracle.

So, now, I look down on my wrist and remember to "expect a miracle". Because, each moment holds that possibility and "suddenly" can happen in an instant and everything can change.

Oops!

I recently switched my email account and in the process of doing so, I also switched over "ownership" of my blog to the new email. The transfer should be "transparent" in terms of the blog, url, etc. Problem is, that meant that the pics that were posted via the old account weren't associated with the new account. So, to make a long story short, I had to figure out a way to repost the photos via the new account and should've posted as a draft rather than a live post. So, a whole bunch of weird new reposts of old photos came up briefly on RSS/dashboards, etc and I hadn't thought all that through. I deleted the new superfluous posts after transferring the photos over so the new posts will show up as invalid. Sorry about all that. BUT! The good news is that all is transferred and should be working fine now. If not, at least I know to post as draft to keep your RSS/dashboards quiet...LOL!

Many thanks to Jenni for pointing this out.

*sigh*

It's been a long, looooong day at the hospital. I'm exhausted and despondent. I hope the remedies work because I DON'T want to have to be readmitted! Hospital inpatient isn't fun. :(

Coughing my head off/lungs out and baffling the doctors with it seems to be my talent for today. *sigh* Coughing is really exhausting, actually. And none of the remedies/meds, etc have helped. In fact I'm really hoping I WON'T have to go back into the hospital. That would not be fun at all.

But for some reason, I'm thinking again of getting another piercing. Problem is, I don't really know if I should b/c of the connective tissue disorder. I'm afraid that would make it more likely to pull out or something?? I don't know. I guess the ones I have are OK so maybe it would be fine.

I know, a completely random thought but one I wanted to share with my friends. :)

I'm back. Just trying out something new. I switched accounts in a way and = wanted to see how this would work out. So I hope to post more later at some point soon but for now, I need to know if this will work!

Why do we humans care so much about what other people think of us?  Especially, when it comes to strangers...I mean, I can understand the rational for those closest to us, I struggle with that myself frequently.  But yet, when it comes to strangers, I just don't get it.

And yet, at times, I find myself tempted to do that exact thing.

OK, so I was super down and I realized that I didn't even get a pic posted.  Crazy..I feel like I failed.  But let's put it behind us, shall we?  Life happens and lately, it's been happening badly. :(

I SAW a pic I wished I had taken today but didn't venture back across the ice to take it.  Maybe tomorrow.

Today, for a few moments, it felt like a hint of spring. The wind had stopped for just seconds and the sun was so warm...it was lovely. I feel happy that I've made it through the winter. It wasn't as difficult as I had anticipated. I had a lot of worry about the snow and ice this year because of the falls Steven and I both took last year and the ensuing breaks, tears, surgery, and months and months of PT. But the sun is shining and spring is creeping closer. I'll actually enjoy the snow expected to fall tomorrow.

As I was cleaning the windows on the car yesterday at a gas station, I had this realization that sometimes you can lose your vision so slowly, imperceptibly that you don't realize it until it completely foggy or gone altogether.

Strange, I know, but for some reason, this dried flower wall hanging made me sad.

Such cuties! Gabbi's become friends with Bogie now too! She's often a little fooler at first simply because of her small size...she doesn't want to get stepped on or squashed. But this is adorable...they've become a family. :)

Asthma and Allergy Specialist...about 50 needle jabs and scratches later, we've determined that I'm not allergic to anything (which I already knew) and I'm diagnosed with a cough. Great. That's what *I told* you I was there for in the first place! Sigh. Onward we go.

This is how I've been (physically) feeling lately...dizzy, disoriented, distracted, disassociated, off-balance. But, I've found out...maybe it's the meds they're trying??

Scary. New drawing books, my first REAL sketchbooks. They start at me and try to intimidate me. Well, I've decided I'm going to win. I'm just gonna start. Does it matter if it's a masterpiece? Nope. Starting somewhere is the key. In fact, starting it is the key. :) I'm hoping to go doodle on some good paper tonight.

Hoping for a dropped morsel!

OK, so technically, this wasn't taken yesterday because it was after 12am but it was legitimately taken before I went to sleep so l'm gonna count it. I'll call it, "wall of inspiration". I need a fresh start.

Promises from Steven... & to Steven

A rather bad pic of a 1/2 eaten crockpot of boiled peanuts...but they were good! :)

For Kim...

For some reason I had tatoos on the brain today or last night. Was thinking of getting one and decided I might have more fun with henna because I could do some of my art designs and use myself for my "canvas". I have some henna for hair that I picked up on closeout for $0.50 and thought I'd try it to see how it'd work. Not perfect and I don't know how well it will "stain" my skin but I like the designs at least. Steven said he'll paint some on my back too. I like that I was able to to it *now* with stuff I already had. Instant gratification is so rare these days.

Anyway, a little bright point in pain fill existence. I'm trying at least. :)

Day 31

New chapter...new journal. Finished my beloved black and white one last night. But this one is from our trip to Montreal last March so it's awfully special too. Hopefully there will be some happy posts in this one. :(

No, this is not a mistake, it's an absolutely genuine photo of blackness which is how I feel. Completely empty, just a void of blackness.

OK, so I was feeling like no one ever read anything I

Year of Wandering

A wrote this poem at the end of last year as I was closing in on a year with the Headache.  I decided to throw caution to the wind and go ahead and share it here on my blog:

Year Of Wandering

Rachel Phillips, 2009

A year of wandering

through a maze, a mist, a fog

I lost my way

Then I lost myself

Separated from the person I'd been

I fear at finding the stranger that replaced me

How do you trust a stranger?

Constant Pain has become my companion

A rude, brazen partner with whom I'm forced to travel on my journey

A temperamental sort, his mood changes on a whim

For no known reason, his irritation with me becomes a torture

He's disliked, unwanted, hated.

I beg, I plead for help.

Desperate for someone to unlock these shackles that bind us together

But where's the key that will free me?

It seems lost or perhaps these shackles were forged with no key, with no means of escape.

I cry, I scream inside.

I sigh, breathe

Again, and again.

I tell my core there's nothing to fear, that this is only pain.

There's no real danger, no reason to run

No way to fight this opponent

If only there were a way to run away from it.

But how do you flee or fight an opponent that unseen? 

Invisible, unknown, but his presence acutely felt

An unquantifiable existence that remains hidden

But always sensed, always perceived

I'm never alone.

This stalker won't leave me

it's kidnapped me, held me hostage

taken away all that's me

stolen my freedom, my mind, my personality, my soul

A predator that's attacked, raped

Will I ever escape?

I don't know.

I wish I could be alone with myself again

For now, I have to figure out how to make this dungeon a home

how to live with this Phantom

How to make peace with the imprisonment

To accept it

To try to appease him, to find out what make him so angry

Maybe somehow I can learn to exist here

Perhaps I'll get used to this dungeon

I'll try to tell myself it's a beautiful open room

high on a hilltop, with a gorgeous view of lands faraway

Of my wonderful Vermont

I have to make myself believe it

Force my mind to be at peace

Nothing to fear, nothing to fear

No real danger.

Another deep breath, a swallow

a deep breath and a swallow

Relax and let it hurt

Relax and let it hurt

Relax and let it hurt

Relax and let it hurt

Please, someone, help me find the key

that will allow me be free again.

I'm trying to find a new rhythm to my life

one that I can manage as this new stranger I've become

I've found my best isn't good enough anymore

So I try to adjust the rhythm of my life to fit what I can do

I'm forced to change my expectations.

I'm diminished in my own eyes

This stranger can't keep up with the person I've always been

The face in the mirror looks the same

But behind that veil

A profound change

It's agonizing to lose a life-partner that's yourself

I try to make peace with it all

My hopes are fading for ever getting back the person I once was

Maybe in times to come this stranger can become a surrogate

Perhaps I'll get to know them and find we can get along

and even develop a friendship of sorts

But I still grieve for my lost self.

In my pleas for help I realize the awful truth, 

that I walk alone in this nebulous existence.

I see well meaning hands reaching towards me

trying to assist or offer reassurance.

But no one can face this torment in my stead.

I try to hold onto these outstretched hands

but the grip is slipping, slipping

Am I losing my grip or theirs?

I try to grab another hand before blackness overtakes

A moment of hope 

A brief connection

Then sweaty palms slide again leaving only a desperate attempt to stay connected

by grappling fingers

But my fingers are too frail...

My little finger dislocates

It's all just too much.

I tumble.

Which end is up, down

swirling, twirling

I'm inside a gyroscope that's spinning

out of balance

But I try to smooth this ocean surface so that these inner waves are unseen

The whitewater torrent remains hidden under a placid calm

Maybe this calm will permeate and quiet

the underlying rapids

I have moments when I'm at peace

When I can cope

and I try to walk ahead with life

Undulating waves of incessant pain

bring fear, anguish, despair

I feel a resolve beginning to grow in me

that this will never change

fear feeds this melancholy state an insidious poison that the pain will grow

and I wonder

what part of me will break next?

Without the hands that continue to reach towards me

to bear me up 

to reassure

to steady me

to persist, persevere to offer hope

to hold onto me 

even when the last of the strength in my fingers fails to be able to hold to them

my spirit, my soul, my heart would truly be broken

The self-sufficient, independent being I was

is now forced to be reliant upon

an interwoven tapestry of family, friends, support, love, community

just to continue to

be.

Maybe sometimes just continuing to "be" is hope enough.

Emptiness

OK, so usually I wouldn't put such a melancholy post online but I think I will.  I can't seem to pull myself up and out right now.  My "homework" this week from my doctor (Anne, the best & coolest dr ever) is to think of as many things as possible that I love to do, that I'm passionate about BUT the list has to be at least 10.  I really can't do it.  I can't think of even a few things I'm passionate about right now.  I feel lost.  Chronic pain is so insidious and changes your life if ways you couldn't have even imagined.  I wish I knew how to rebuild myself.  I wish I had enough left in me to want to.

So, where does it all go from here?  I wish I knew.  All I see is a black abyss and continual ongoing pain without end.  Hope deferred makes the heart sick.  I can see why.  I can also see why hope is in *the* list along with faith and love because it's a lot more important than we realize.  Problem is, we often don't realize it until it isn't there anymore.

So me, the former eternal optimist, has lost hope.  What happens next?

Day 29

OK, so I couldn't leave out my other sweetie. :) Such a handsome brute, isn't he?

Snow Patterns.

Day 27

Such a sweetie. :)

Day 26

I'm trying to get reinspired on my photos. I took my camera with me downtown for a bit and was almost back to the car when I saw this scene and loved it for a photo. It's not as "perfect" as I'd like but overall, I'm pleased with the results. The structure has nice lines and color, especially with the little multi-colored cart next to it. :)

Wow, a flurry of posts tonight!

I'm trying to get some new ideas for food, especially low carb ones (NO, we don't do Atkins!!, it's for Steven).  So, I'm hoping that if City Market doesn't carry dried black soybeans and raw peanuts in shell that they can order them for us.  Mmmmmm, finally can make my own boiled peanuts!!!! :D  That's worth getting happy about.

OK, I need a fresh umph (great vocabulary, eh?) put into my photography.  Just a new dose of (not so much inspiration) as invigoration.

Day 25, Multiple Photos

A goreous rainbow as we were coming home today...a full one and it was right over our house. A very happy thing.

Rainbows embody hope in some way and I'll try to grab onto that.

Still having trouble getting on top of life right now, though.

A new week, a new start.  Seeing someone new for the HA today.  Try to find that grain of hope that I've been "prescribed" to try to grab hold of.

Time just rolls on and on and on.

My littlest cutie. :)

Life's Secret?

It seems to me that one of life's secrets is figuring out how to turn "have to's" into "get to's".

I have no idea how to make that happen.

Day 23, Photo 23

I was craving Pepsi tonight. :)

Day 22, Photo 22

Unfortunately, this photo doesn't show up nearly as well as I wish it did but it's a favorite of mine. It's a photo of a photo in the hand surgeon's office that I saw again yesterday. It's just so adorable. Makes you smile even if you don't want to. :)

SO SMILE ALREADY! (just kidding)

Day 21, Photo 21

Just for a laugh... I was joking around in the car today in Montreal when I saw the KFC logo and said "I wonder if it's something like "PFK" up here, for Poulet Frites Kentucky...that would be funny!" Then as we drive past...I see that it's EXACTLY that! I was like YYYYEEEEESSSSSS!!!!!! And, I figured it out all by myself with my limited knowledge of French from when I was 11. Hilarious - or maybe you just had to be there.

Day 20, Photo 20

This tree caught my eye today. It's shape and starkness against the sky were striking. It looked like it stood alone, though surrounded by other trees. Lonley, even though it's in a group.

Today, I wish I could just fade away.

Day 19, Photo 19

Masked, masked, I feel masked! Where do I find myself again? Who actually lies under this face I put on for all to see? Who sees the real me? Who *is* the real me? It's all a masquerade...

I wish I could wear this gorgeous blue mask all the time. It would be so much easier. I could maintain everyone's expectations of me externally without effort. The problem is, it's *my* expectations of myself that are the most impossible to fulfill...

Day 18, Photo 18

Withered and dry, their life is spent. Waiting for a renewal of season, for life to begin again after a cold, painful time. They cling onto the slim arms as if grasping at straws, desparately trying to hold on for one more moment against frozen winds which oppose them.

But they must eventually let go for life to begin again. Indeed, if they don't release their own weight they'll be pushed out by the new life fighting for its chance in the world as spring begins.

Life is such a struggle...back and forth, letting go and renewing. Holding on and losing. Ebb and flow.

Turn, turn, turn.

Day 17, Photo 17

Topsy, turvy, which end is up, down. Skewed perspective, am I out of focus? How do I regain footing again?

Day 16, Photo 16

Looking down, thoughtful. Bizarre perspective. Elongated, drawn out. Black and white.

Or is it shades of grey?

Not really very late night

I've been thinking a lot the past few days since I've been in the hospital.  Between umpteen neurological checks, vitals, pokes with needles and various other interruptions along with loads of medications that make me wicked sick, I had little else to do but think.  Well, cry, too.  I did have a couple of meltdowns on Wednesday.  But it was almost impossible to read because of the HA and being unable to sit up and there was literally nothing on TV.

Day 15, Photo 15

Home, home, home! I'm so happy to be home from the hospital! I just couldn't wait to get out of there. My back is hurting like crazy, HA still there, though the positional part may be a small bit improved. So, that's at least a little something good.

So, not a lot of time put into a photo today but again, I'm enjoying being forced to see something different in what's around me. Love the ripples inthe brick and even the shadow. Tried it w/o the shadow and it just didn't have the same interest. Go figure. And, I didn't miss posting so 15/15 so far for the year. Not very far into it, but considering that this hasn't been the easiest couple of weeks, I'm happy about it.

Maybe that this doesn't really tie into anything or perhaps there's some subliminal message that says something about brick and feeling like home. I don't know. I suppose in the end the interpretation is entirely up to you...

Day 14, Photo 14

Trying to find an interesting *and* at least somewhat artistic photo in a hospital room when you're tethered to an IV pole is a bit of a challenge. But it forced me to look at things a little differently which is always a good thing. I'm fairly pleased with the results...not a masterpiece per se, but something a bit quiet and perhaps a little meloncholy.

So, still haven't missed a day posting which, given the past two weeks that I've had has ebbne a feat of which I'm proud. Thanks to camera phones, eh?

Yes, I know there are likely spelling errors from the past few days but I'll clean it all up when I'm back online on my computer, so fear not. Those errors and annoying ads that Verizon feels they have the right to add to my picture messages will be gone for good.

I'm a little better today...at least my spirits are. :)

Day 13, Photo 13

Really?? Yes, really...4 times to try to get a replacement IV then flabotomy (sp?) came to do another draw for more blood work. I feel like a human pin-cushion and I just want to go home. No improvement in the HA and just a lot of exams/interruptions/vitals. etc to show for my time here. I really wish they could have treated the positional HA first so I could hear properly and sit up. :( This has GOT to start going faster and better. :(

Day 12, Photo 12

Oooooo! Just squeaking this one in before midnight! But, made it nonetheless. These are two of my sweeties. They looked so adorable I had to snap this before I left for the hospital again. I miss 'em all! :( So, not the snap I had in mind for today but nothing wrong with it and the subject(s) are certainly cute enough.
Gotta get this sent now before I miss the deadline! Hospital admissions notwithstanding...