Revelations, Post-Consumption.

NOTE:  I apologize if the audio isn't quite up to par, and I'm looking into a decent mic to cut down on the static heard.

"Post-Consumption" and what I mean by that.  AFTER a malignant narcissist chews you up and spits you out (narcissistic supply).  Plainly, put.

September 01, 2016: Rant, Confusion... whatever...

Life.  Amiright?

An Evolution of Life.

So here I am again, typing.  I made several attempts at creating audio files to avoid stressing my left arm, but I can't seem to find a way to upload them.  C'est la vie.  I wish I could've found a way to upload them for one very important reason----I spilled my guts, poured out my heart and am now a bit spent.  Where to go from here.... ?

It's been a rough couple of weeks with physical therapy and trying to avoid taking pain medication unless absolutely necessary.  I've had a bit of trouble with the new bed and will be exchanging it for a hybrid.  I prefer the hybrid (memory foam + springs) better anyway, but the Tempurpedic sales rep said the one I ended up with was better for me, based on what I told them.  Wrong.  lol  I do get that they tried, and I'm grateful for their help, but it turned out to be an epic fail.  They're policy is also... when you exchange it once.. you're stuck with it.  C'est la vie again.

Go with the flow, as they say.....

In the meantime I will deal with it as best I can.  Tomorrow my Lazy Boy recliner will be delivered and, if necessary, I will sleep in that.  Bed--recliner--whichever is more comfortable.  I have to say.. I'm excited about the recliner.  It's not cheap, but then a hand-made chair, leather and solid wood.... you get what you pay for.  Who wants to throw good money after bad anyway?

For the first time in weeks I'm listening to music.  Since the surgery I've been too painful to deal with any extraneous stimuli, including music (which I LOVE).  I've learned to take cues from my body and actually LISTEN to them.  And those are some hard-fought and won lessons, I have to say.  In the spirit of being far more kinder to myself my body dictates what I do and don't do; such is the healing process.

While it appears at times as if progress is being made with my shoulder healing, other aspects of my health continue to be a bit more stubborn (to say the least).  It is what it is, and I'm also trying to just do the best I can with that and not get down about it.  So NOT easy to do, trust me.  In the midst of attempting to make my health and life better I sometimes fail--but I keep trying.  In the deep of the night things are often breaching the perimeter of the impossible---pain, being worse at night, drags me right to the edge and invites me to give up altogether.  And I almost have.  But somehow I've managed to bring myself back again, to fall asleep out of (if nothing else) pure exhaustion.  There is success in those little battles, even if they're barely won.

My goal is to get healthy again, to have my shoulder heal, to tackle (finally) the fibromyalgia and break away from all the pain, to live, to live vitally and wholly, to be myself again... finally.

I want to find myself at home again, at peace again, to thrive and love my life again.

Post-Surgery Pain and The Inevitable Pain of Indifference.

This is difficult.  Post-surgery for frozen shoulder and minor rotator cuff tear and I'm feeling like hell.    It will take a long time to recover and regain full use of my left arm, and dammit but it hurts to type.  I almost decided to do an audio blog but not enough privacy the last couple of days to do that.  So I'll make this just a quick check-in.

I'm not sleeping, mostly getting up several times a night to move my arm, elbow... to alleviate what pain I can.  This is often a tearful process.  I don't know when the big crash will come, but it will.  A human being simply can't withstand not sleeping like this.  On Wednesday, then on Saturday... things will change and hopefully for the better.

Sleeping on my side after this kind of surgery isn't the best idea, and it creates a world of pain, swelling to an unhealthy level in my arm.  This became the catalyst for ordering one of those Tempur Pedic beds.  NOT the cheapest thing in the world, but a very necessary one at this point as the healing process is going to take a long time.  So be it.  It's adjustable so I can support the back of my legs and have the back of the bed upright to manage sleeping without being on my side.  Saturday, a Laz-boy chair will arrive, and mostly for the same purpose.  As it stands now my options are to sit straight/upright or lay in a flat bed.  Both options mean pain and swelling.  But hey, those recliners are awesome and it's not like it won't be fully enjoyed way beyond the shoulder healing.

I suppose at this point I'm just rambling, but everything I am is consumed with the pain and trying to work past it without taking the powerful pain killers I was given.  The side effects sucks, and that means I'm making damn sure to take them sparingly.  But either way, my point is basically that I'll be dealing with this for a while and probably not making a lot of sense when I post.

There most likely won't be daily entries for a while, but I will try my best.

Post-surgery with all it's unbelievable pain has opened up a part of me that I really would rather leave closed, shut away, and ignored.  That echo chamber of the past and present merging in unsettling ways rumbles below the surface, always, making itself known at the darkest of hours and experiences.  I find myself unsettled---not just my circumstances or thoughts.  In the wee hours, especially when awakened by the almost ceaseless pain, true anxiety sets in and grips me.  Most of the time I can overcome it and get past it's frightening messages.  But then there are times when it takes hold and I find myself incredibly vulnerable and needing a strong, positive presence to jerk me back into a brighter reality.  Things is... I have no such strong, positive presence.  Yeah.
What to do with that.

As you guys know, indifference has been my companion.  T's indifference rears it's true self amidst the pain that really feels as if it's going to rip me apart.  You see, the first part of knowing how to squash pain naturally is to avoid stress at all costs, because stress destroy's the body's own ability to send much-needed pain killers to it's needed location.  Over time, especially in the presence of AI disease and fibromyalgia.... the breakdown of this mechanism is swift and brutal, leaving me without any natural defenses.  This sucks.

I've been brought to tears by the sheer intensity and duration of this pain, and the fibro is in a massive flare-up now, adding wide-spread, diffuse pain to that of the post-surgical.  While it's nothing to brag about, I will admit that I've been brought to my knees by the force of it all, crying so hard I felt as if my head would explode.  Late at night, when it's at its worst T will simply get up, stand there... and say nothing, do nothing, offer nothing.  I've had to tell him it's best he stay away rather than bring that indifference to the already miserable situation.

It is times like this that I long for "home," whatever and wherever that is.  No one to reach out to, to plead to, or talk to.  Not a parent, sibling, or best friend.  No one.  It's only when either by exhaustion or prescription intervention does the pain lessen a little, just enough for my mind to bring forth an image of a healthy, happy, joyful, fulfilled and pain-free me.  When I fall asleep... it sometimes carries me into dreaming, those thoughts.

My arm is in a lot of pain at the moment, so I'm going to sign off.  I hope that each day with willpower and physical therapy.. and even the weaker moments when I allow myself the prescription help to relieve the pain... maybe I'll get stronger, better.  I have 3 days of PT this coming week... and I pray it's the start to real recovery.

I need this pain to stop.  I really do.

Hopefully I can post tomorrow.

PS... I was amazed at how many page views Where Fireflies Dream received.... gave me a smile.

It's About Time.

When I first began blogging it was for one specific reason--venting.  I needed a place where I could get things off my chest that were bothering me so I could get on with life without cumbersome emotions or baggage.  I had ONE blog at that time.  When things got tough, and they often were, I would visit my blog and unload to my heart's content, not giving a single iota to being politically correct or holding back out of some delusion that I somehow had to be 'polite' here.  The venting would ensue, fall upon the screen, and I would be left to bask in the aftermath of some seriously epic purging of thoughts, feelings, and more.  In the end I would usually go back and delete the long-winded and emotionally-charged entries, knowing I could do so now that some time had past.  That blog still exists and I still post in it as often as possible, and I named it "All Things Ephemeral" for a reason, even if that reason no longer exists.  Let me explain....

A few years ago I made the decision to stop deleting the entries.  Being honest with myself I realized that I was deleting so as not to 'hurt feelings' of those I vented about.  No matter that I left off names and details that would give much away to the wrong set of eyes reading, I decided it was somehow 'impolite' to share even my feelings and experiences.  Boy, was that ever stupid.  I'm glad I came to my senses and stopped editing the content over some perceived butthurt it may cause someone else.  But, did I really stop editing my own entries after all?  Well, today I figured it was something worth investigating.

I often come here and stare at the blank screen where bits of my life would fall and wonder... "How can I actually talk about this?"  I know as I write just how much I'm holding back, even when I don't WANT to.  Still, the struggle to set myself free remains just that--a struggle, even today.  Even when I know the healthiest thing I can do for myself is write about it, get it out of my system, it's remains incredibly difficult just the same.

What I want very much to do right now is to take the first step in 'going there,' to talk openly instead of using a string of allusions to piece together a story that, when all is said and done, remains unclear and ill-explained because of that fear below the surface of truth.

A Bold First Step

My next blog entry will be in This Free Spirit, and I tell you this because it will ultimately be the first blog entry in many years where I hold little if nothing back.  With failing health I need all the help I can get to break the bonds of emotional servitude, and the first step is to open myself completely to the idea of 'almost' full disclosure.

Wish me luck....

The Danger of Indifference.

I know every cliche there is about life and happiness.  The sayings, unfortunately, are just that and don't really bring anything useful to the discussion most of the time.  "You're the captain of your own ship" and other cliches I find are just uttered AT someone due the lack of having anything substantial or helpful.  It's all very well-meaning, of course, but as they say... "The road to hell is paved with good intentions." *wink*

I don't need cliches or old sayings or quotes from famous people.  What I need is substance and action from people who are involved in my life where they have have direct and powerful influence in what happens in my life or to me.  Keep the platitudes and he cliches and the rehearsed and memories 'pretties.'  What I need is something REAL.

Many times people will utter those cliches, or even quote scripture as a response to questions or shared feelings, experiences or thoughts.  I would rather someone be honest and tell me they don't know what to say instead of offering verbal memes as a replacement for heartfelt responses.  There's no replacement for real feelings.  You can't pretend to say or do something from the heart.  People know when something isn't genuine.

Not everyone resorts to cliches out of indifference, I know this.  But many people try to cover their indifference with BS.  Just stop it already.  Actions speak louder than words, right?  And even the smallest action can be recognized as an honest attempt.  But do NOT try and tell me you 'care' or 'love' me when your behavior screams indifference.  Don't underestimate me, and don't assume I don't see what you are or where you're at just because I remain quiet.

Indifference has no place in healthy relationships of any kind.  Not working, not romantic, not friendship, not even in business or career!  An indifferent nurse will often be irresponsible.  Do YOU want an indifferent nurse to be giving you medication and measuring injection dosages?  I sure as hell don't!  Indifference is dangerous... on all practical and impractical levels.

T's indifference this morning left me angry and also alarmed at my situation.  I won't go into it all again here as I spilled my guts about that in This Free Spirit.  I'm just venting at this point and wondering why human beings choose indifference over compassion and empathy.

That's the million dollar question, isn't it?

Why Dream?

I used to dream a lot.  I used to believe that pretty much anything was possible.  I also used to believe that people in your life who say they love you also want your dreams to come true, for you to be happy.  But the truth is--no one really cares about your dreams, desires, and often... they don't even care what you NEED.  But what if your dreams ARE what you need?

I hear the chatter, the whispers on the web and witness the effects on women everywhere when disconnection takes over their lives.  Meaning, the disconnection of whomever they're with, the disconnection that divides, hinders, then ultimately destroys dreams.  It's there, and the blind are those who seek to control and tell that person---they're not allowed to have that dream.  Or worse, to insist that the dream isn't possible.  You can DREAM it but you can't HAVE it.  That message seeks to destroy.

I have dreams every now and then when I can pry myself away from the chronic pain, the debilitating pain as it is on most days right now.  They creep in subtly and often fade just as quietly as they arrived.  More times than not these days, however, I'm fighting against that negative force that reminds me daily that I need permission to dream, to want more, to see my life outside of what it is at the moment.  When I reach for better... my hand is slapped away every time.

Why dream then?  Why waste the time and energy to think, to visualize, to want something better than what I have?  Why envision my life as it was before I became sick?  Why bother at all?  Because the times that I give up it feels a little like dying.  I can't explain it more than that, but it's what it feels like---as if life is absolutely over.

I have to think about that.

What I Want.

I guess I got most of the rant out of my system in my other blog, so I'm going to try and avoid going there again here.  I can't promise anything except that I'll try.  I've seldom allowed myself to talk about what I want, or what I need.  There are reasons for that, but they're not important at the moment.  Either way, maybe it's time....

Many times I lay in bed at night listening to music and remembering how I used to feel when I was healthy and mostly pain-free.  It's not an easy task, remembering when I didn't feel pain 24/7.  But it's necessary, even critical that I not lose that memory of feeling well, healthy, at ease, calm, and... good.  That's my task each night as I lay there in the darkness.  I don't mind revisiting, but it's getting more difficult as the pain gets in the way.  So what do I think about, dream about?  Well, it's not as important what I think or dream about but actually what I ABSOLUTELY NEED to thrive.  And on those I'm very clear.

I need peace:  Peace is easy, imho.  To me, peace is the result of respecting the environment around you and everything in it.  It's not complicated to understand that a person's environment deeply affects their lives---and the health of those who live in that environment.  Having a clean house is important to me.  NO, I'm not talking about a sterile environment where a few specks of dust sends me over the edge.  I have a dog and have had pets most of my life, so I can't afford to be picky given that.  Basset Hounds shed, at times drool, and... well, that's life with a dog. :)  I wouldn't change it for the world.  However, there are some things that should be done on a regular basis for me to be comfortable and happy in the confines of whatever space I'm living in.  Just one word: clean.  that word is easy to understand, and easy to accomplish.

So how is it that 'clean' translates to 'peaceful' to me?  Well, it just does.  I'm a clean person and find a clean environment very comfortable, very peaceful.  It's not the only thing that instills peace, but it's a damn good start.

Picking up after oneself.  If you make a mess, clean it up.  Don't create messes, especially necessary ones.  And don't rely on other people in the house to do it for you.  Easy.  I raised my kids and don't feel like cleaning up after an adult one, meaning... my other half.

I need more than tv to 'live' my life!  T wants to sit in front of a tv during every spare moment of his life.  As for me, I can't do that.  Sometimes, yes, of course.  But not every spare moment.

I need to EXPERIENCE LIFE!  Sitting at home every spare moment waiting for 'some day' to come along, or 'retirement' to usher in actual living isn't my thing.  It will never, ever be.  I'm very sick right now, more than I've let on here, but... even with that my entire spirit cries out for EXPERIENCE.  I want beauty in my life, to experience something else, anything else than the chronic dullery of the status quo.  I want to see places here in the US I've not seen, to be awed, inspired, and fulfilled.  I want to take my camera and capture every moment.  Drive just for the love of driving, and MOVE through life instead of watching stupid tv shows to see other people living through fiction.

I need to have fully-engaged conversations with other human beings!  T talks, and he's brilliant.  He has a 150 IQ, two masters degrees... but doesn't like to engage much in conversation.  I often just give up quite honestly.  There's a lot to talk about, be it life here at home or anything going on in the world, cars, photography, nature, and hundreds of other topics... even shows on tv we mutually like. But that fails miserably most of the time.

I need beauty, engaging conversation driven by passion for the subject, laughter, joy, hope, dreams, and just to be completely comfortable in my own skin again.  I need to eat clean, healthy... and not have to fight every single day to do so.  I need to have at my disposal the tools necessary to help myself.  Is that so much to ask?  I don't think so.

I need to feel passion for my life again.  I need to feel excited about my life again.  I want to feel actual health, vitality, energy, and LIFE coursing through my entire body again.  I want MY life back, rather than to be forced to live my life through that of another.

I.
Want.
MY.
Life.
Back.

I need healing.

The Maze of A Single Day.

Music: Sounds so much better with external speakers or head phones.  However, this is one of their best I think. "Everytime" by Broods.

This morning I woke and resolved myself to going into each of my blogs (links in the side menu bar) and posting.  It's the one way I have to work through whatever's happening in my life.  My one outlet, my only hope of unloading the bad, or tossing the good into the breeze like digital confetti.  The latter is rarely ever the case anymore, but... if I'm honest with myself each and every day then I'm doing something good for myself right there.  Still, the path through my days has so many twists and turns that it's incredibly easy for me to get completely lost inside the confines of my own life and environment.

Whether it's navigating around pain, fatigue, weakness, or whatever.. it's a maze I can get lost in if I'm not very careful.  So, I'm actually out of bed.  And oh yeah, this is something worth celebrating.  If you only knew.  But I've managed to force myself to get out of bed and at least go into the dining room for as long as I possibly can.  After having that hour long MRI the other day, I have to admit, accomplishing that one task is difficult.  Yet, here I am, somewhat among the living.

It's just me, Pandora radio (Broods at the current moment), a last cup of coffee, my blog, my dog, and my pain.

While T is outside trying to wreck the lawn mower by running over tree limbs... I'm trying to not feel stressed or anxious about that.  *sigh*

God help me through yet another day....

"You've chosen lessons of pain"

I received a message with this video in it yesterday.  I have no idea who the person is who sent it... but, oddly.. this is one of my favorite songs and one I listen to every night.  Headphones on, dark room, and songs to obliterate the thoughts....

The Greatest Misunderstanding of My Life.

I know who I am.  Or, at least who I'm supposed to be, who I used to be, and who I still am inside.  She's in there--I can hear her.  It's not the first time I've lost myself to a situation or another person.  It's all quite familiar, and not at all in a good way, I promise.  No need to talk about how I got here, because I've vented on that enough times that it's cemented in 'moot' at this point.  What I need to work on, find and deal with is the 'how' of where my life is currently.  HOW do I get out?  How do I repair myself, heal myself?  HOW do I go about finding the help I need to lift me into the light, to the only place I know healing can happen?

How?

All the self-talk, and all of the ideas that enter my mind late at night when I'm alone in the quiet, the dark and with only my thoughts... falls short of having any impact in the light of day.  Why is that, I wonder?  How can I find what I need and have it slip through my hands as the light slips through the window?  Exactly what part of me gave up so completely that I can't even hold onto the little resolve I have when faced with my own thoughts?

If I could only be able to answer any of those questions without having to add yet another question mark.

Clearly I know what I need--on the surface anyway.  There's no misunderstanding about where I am o want to be.  The problem arises from my not having any guidance as to how to GET there.  Just when I think I have every answer to every question, the mask slips off the face of mother solution, leaving me to wonder how a person can misunderstand themselves so completely?

I'm talking through pain, so if there's anything incoherent in what I'm saying... that's why.  As this misery reaches an intolerable level I'll most likely make much less sense.  Won't that be fun?  Ugh.

Okay.  So have I misunderstood things in general?  Have I missed the mark, the answers, the intent of what's around me?  All I want is answers, solutions, and to STOP being in pain all of the damn time, to get back to me, to feel like me, to FEEL GOOD AGAIN.

Sigh.  Apparently.. I'm asking way to freaking much.

"G" gave me an order! OH NO SHE DI'NT!

OH yes she did! ;p  And then we cracked up, drank coffee, and drained our cell phone batteries talking.

Basically, we have this same conversation about twice a month, sometimes more often depending on how much I put into my blogs.  You see, she has ONE blog that she pours absolutely everything into.  And that works for her.  Not so much for me.  So, on occasion, like yesterday, she told me I "Absolutely must" put re-share the links across my blogs so people realize I'm not always saying the same thing in all the same places.  Okay.  If I must. ;p  She's a good egg, so I'll indulge her every so often.

The one thing I'm not on board with is her insistence that I talk here about the same things I talk to HER about.  Yeah, no.... I don't think ANYONE is ready for THAT! lol


NOTE: The links below can also be found on the menu section in each of my blogs.  Easy peasy. ;)

My other blogs:

Boo's Juicy Bits

This Free Spirit

Where Fireflies Dream

The Crap I Spew

All Things Ephemeral


Happy now, G?  Now let's see you bring some order to that mincemeat you call a blog. (*snort*).

Yeah, we've been friends for several years so can jab at each other.  All in good fun.. :)

Anger? Surprise? Inspiration at its worst? WTH?

REPOST from my other blog(s):

Sometimes I get a spark of something that inspires me.  Such inspiration doesn't always present itself in the best way, though, but I usually try to go with it when it happens.  Such gems shouldn't be taken for granted but taken advantage of.  It really is that rare.

In the midst of fighting for every drop of energy that can be found wherever it is I can find it, a tiny burst will make its way into the day and nudge me.  Okay, I can certainly deal with that.  Wish there were MORE of it, but I'll take what I can get and go with it nonetheless.

The fuel for this little 'fire' isn't from a good source, definitely not a positive force, and most definitely not from a pleasant source.  Be that as it may, there it is... kind of like when your dog has an accident and you're left looking at it wondering to yourself what you did to deserve such a... 'gift'? lol  Okay, okay... enough with lame attempts at comedy.  Even so, the conversation with a friend of mine earlier today was what ignited this whatever-it-is and sent me on a journey to try and put my thoughts in order.  I found the results of that rather.. lacking.

All this blabbering, to be honest, is just my working through it all.  Not the conversation, because that was interesting and creatively invigorating.  But the chaos I'm dealing within the thought process at the moment is simply trying to pull together the shards of data that's left from past experience.  Anyone who understands this knows where I'm coming from.  G knows.  She gets it.  And, from what I read on her blog(s)... she's been able to run with it without tripping like a clown every step of the way that I've been.  Eh.  I'm still confident that this purging will eliminate the chaff and reveal the good stuff.  I'll be back to discuss that when it happens.

The Art of ASSuming & The Most Powerful Thing To Be....

I spent the last 1/2 hour or so talking on the phone to a friend of mine, who also has a blog as well, and we talked about life, health, girl stuff, and so on.  During the course of the conversation, and as the conversation settled into more meaningful, deeper topics... we both came to the realization that scrutiny is good, and ASSumption is bad.  Okay.  Sounds silly when you put it like that, but why confuse the issue with pretty words?

Somewhere between acquiring information and implementing reason something can go very, very awry, and the consequences aren't anything to write home about.  So why do people fall prey to the rather weak lure of assumption when the truth is often, though not always, fairly interesting?  G and I concluded that we definitely are in the middle of a dung-pile of thrill-seekers who can't handle being removed from the most caustic drama available.  And when it's not available... they set about constructing the facade that will most assist them in their endeavor to be shocked, appalled, thrilled, and mortified.  How crazy is that?  Well, maybe it's not crazy at all.

Humans thrive on drama.  Whether you have drama in your life or not, and it doesn't matter who's fault the drama is, people just can't seem to help themselves when said drama isn't up to par for their taste.  It takes talent, G and I agree on this, and we believe that in all seriousness people hone and perfect this skill that is not at all unlike mental heroin.  Once people try it.. they can't do without it, and when their 'stash' of drama runs low, or it's just not doing it anymore for them, they have to enhance it somehow.

Right before G and I hung up so we could, you know, blog about it (grin)... we both thought there was, in so many ways, a certain kind of power with being honest with blogging AND life.  When you realize your advantage, when it finally hits you that you're actually in a position power... the anger against having ASSumption being projected on you... that's the moment you win.

The most powerful thing to be, hands-down, is underestimated.

Now, this isn't anything new.  I've known this, as most do, my whole life.  Or at least fairly early on at some point... usually in childhood.  Even if we don't recognize it right off deep in our gut we know.  The first time someone doesn't believe us when we're telling the truth--realization sets in.  And either then, or later on in life, at some point in time... you understand fully that the moment people don't give you credit for having intelligence is the moment they relinquish their own power.. to you.

People who don't respect you try, even subconsciously, to discredit you.  This is a very strong form of underestimation of you as a person.  This means they underestimate you, therefore, can't predict what you will say, do, or think at any moment in any situation.  The mistrust they infuse doesn't move beyond themselves and, therefore... they weaken their own ability to 'keep up.'  My question in all of this is.. "Why on earth would they deliberately assume the position of weakness?"  Well, that's something only those people can answer.

I can be amused by all of this easily.  However, as G and I agreed, there's a certain element of pity that comes into play when you realize that when people choose to inject ASSumption into truth that their lives must become terribly distorted as a result.  How can anyone find anything good if the distortion becomes a barrier to actual communication?

At this moment I can visualize G blogging away frantically---excited to know she's not as powerless as she once thought.  It was a good conversation.

Off to re-post on my other blogs, then to read G's blog...

What a weird freaking day.

Weirdness of Dreams...

A strange thing about dreams--the only scary ones are those that present as reality.  At least to me.  But I don't have nightmares, so I'm not speaking of those.  For me, it's how utterly REAL some can feel, and waking up feel like you're not in the right place anymore.  Whether it's the faces and interactions with those real and the obscure, the result is the same.  I wake up feeling utterly at odds with just about everything, feeling something that's almost akin to mourning... as if, by waking, I'd lost something incredibly important.  Such are dreams.

I've spoken about this a few times in my blogs, I know, and I suppose it may seem that it really doesn't have much to do with 'real life' or 'actual reality.'  But doesn't it?  If, as they say, the subconscious drives our dreams, creating that inner reality as we remain a silent passenger on that ride, then isn't it in some way our own reality speaking directly to us?  I rather think so.  Not that it means we have to ACT on our dreams, but at times.... people have, including me.

It's a long story I won't go into, but I actually had ONE dream many years ago that profoundly impacted my life--and for the better.  Let's just say that upon waking that morning I knew I had to change my life, and change it in a way so that it altered the course of my life going forward.  Trust me, it was a very good thing.  I went to bed in one place my head and woke up the next morning... changed.  In the throes of silence it was still, in every way, cathartic.

I'm not going to say my dreams of late have had this kind of impact on me, but they have caught my attention.. as I believe the innermost part of who I am is sending me warning shots.  I wake up somehow knowing that time is of the essence--yet my body refuses to allow me to DO anything in response.  Kind of a real bitch, to be honest.

Somehow I have to find a way, as soon as possible, to reconcile what I can and cannot do with regards to my health and what is absolutely necessary to survive.  Steps I've taken recently, with the decision to stop medication (much to my doctor's chagrin) is a start.. though I won't go into all that again here.  Still, I've put my health and well-being, which includes ultimate happiness, into the hands of physicians that have, but for a couple of issues, failed thus far.  Now it's up to me--at least that's how I see it anyway.

They don't understand, those doctors.  They don't understand why I'm choosing to risk everything by not taking medications they say I HAVE to take.  They fail to understand that quality of life is everything, and that no matter how long you live--if you're quality of life is nil.. what's the point?  "I" get it, and that's all that matters.  Ultimately, it is my life and my choice.

Given these are recent decisions to clear medications from my system to help myself get to the bottom of this debilitating fatigue, etc., perhaps the dreams I have these days are simply telling me to 'hurry.'  So that's basically where I get that from, that thought, that guess (because guessing is all I have) as to what my dreams, or subconscious is telling me.  For all the hassle and failure and attempts to try this or that to rectify the situation, I truly believe the message is: HURRY!

It's not as ominous as it sounds.

The fireflies are back...

I often see them outside the bedroom window at dusk and in the dark.  Sometimes one will cling to the outside of the window sill... and just blink... almost like it's saying hello.  The whimsical part of me remembers better times, before the pain and weakness, when I would go outside and just stand there among them.  There really was no place or experience more peaceful.  Now, I watch from afar, wanting desperately to be a participant again... in life.

Not sure when or if I'll ever be 'normal' again.  I'm losing hope, I have to admit.  My own light flashed brightly then.. simply went out for the most part.  And here I am, waiting in the dark, just waiting for those with the power to help me heal to... help me heal.

I waver these days between hope & depression.  And, there aren't any 'up' times at all anymore.  This severe pain, worse than anything I've ever known, has literally taken over my life.  Now, my life is measured, literally, between those doses of Tylenol... as I wait.

I've sent up the flare....

When I'm without words, music...

When I'm without words, music.....

Not managing this at all.

Because my blogs are divided by focus, I'm not going to rant here.  Instead, I want very much to try and focus (TRY being the key word here) on what I want, hope for, dream of, and very much long for.  I guess you could say that while I don't know exactly what all those things mean at this point.. I still have a feeling inside that points to a particular direction.  Got that?  Yeah, well.. I'll try and explain.

In a nutshell--I'm still very sick, and most days I'm literally bedridden.  I've stopped four of the medications I've been on, MUCH to my Hepatologist's chagrin, in an attempt to do what the medical community (thus far) has been unable to do---return me to health.  I've even attempted a trip to the ER (not easy, mind you) and all I saw was a nurse practitioner (not a doctor) who did blood work and told me it was fine.  "Fine?" I thought.  I'm bedridden, have nausea ALL of the time, in so much pain ALL of the time, unable to move or walk or stand and can barely make it to the bathroom on my own.  And yet... I'm... "Fine."  What the hell does that even mean?

Some days are better than others, and some days I literally wonder if there's something inside of me actually siphoning off my life.  Who can be this sick 24/7 and believe they'll live for much longer?  I'm not joking either.  Pain is one thing.  Fatigue is one thing.  Malaise is one thing. Weakness.. nausea and loss of appetite.... where in all of this is anything pointing to 'normal'?  There isn't, and my gut is sending out warning signals, big ones.  No, I don't think I'm going to die.  I don't know what's going on at all, so I can't guarantee that something bad isn't happening.  I just don't know.  Nor do the doctors.

I have bad days, and I have unbearable days.  Today is bad, but it's somewhat bearable.  I try to move, to do SOMETHING, even if I can't work out/exercise right now.  It changes nothing.  But I still try on the days I can.  It just feels as if I'm spinning my wheels in the mud and sinking.

So---it actually looks like I'm going down that other road here---you know, talking about anything but hopes and desires.  There's something in how flat the latter falls when I think about them that's holding me back from talking about it.  As if in some way I don't believe that there is hope, that all desire for life, living, joy has simply dissipated in the BS.  And I've not even spoken of the BS yet.

I need to be healthy so I can leave.  There.  I said it.  There are things I can handle, and things that are a complete deal breaker for me.  If something directly affects my quality of life for the worse.. THAT is a deal breaker.

In many ways the details don't matter.  All the clutter of what's wrong has turned into a mountain I can't climb and have stopped trying.   Taking matters into my own hands and acting in my best interests has come the priority.  Putting T's interests and priorities ahead of mine this long has all but ruined my life.  This is a pattern of mine and one I thought I'd broken.  I put everyone else in my life far ahead of me.  When it comes to my kids (grown) I'm still that way, but when this happens to someone who also has only their self-interests at the top of the totem pole, where their needs, wants, etc. are top priority---the imbalance eventually tips the scales and the whole thing comes crashing down.  Boy does it.

I'm not okay with what's happening and haven't been for some time now.  As my health deteriorates I'm forced to take inventory on everything in my life, and I mean EVERYTHING.  What it's boiled down to is that I MUST get healthy and regain my strength so I can put this relationship out of its misery--MY misery.  T just wants things to keep going as they are, and I just can't do it anymore.

So that's where I am.  Sort of.  I don't feel well enough to put it all out there at the moment.  However, I may try to make an entry in a bit about what I do want, long for, desire, and hope for.

......

Then I believe, Then I don't.

And what I'm left with in the end is--not a single answer, solution, nor any real strength to wait until the next step reveals itself.  Over the span of more than a month now, ever since titering off the prednisone, my body has become my worst enemy.  It's weak when I need strength, it's 'loudly' painful when I need peace, serenity, rest.  And for the life of me nothing seems to get better as the days pass one after the next.  Nothing, it seems, is working.

There is hope, right?  People always say "There is always hope."  But the time for continuing to believe in something that has yet to be true--is coming to an end.  Once again, though most want to help, doctors are throwing up their hands and telling me--they don't know what to do, what it is, or how to help me.  I still have one last appointment, with an endocrinologist this time, who may be able to help.  Is this going to be my last hope?  I don't even have the strength to ponder that question.

So in this "New normal" of mine, real life doesn't exist.  Nothing beyond the windows means anything, and all inside this house can continue to collect dust in it's blooming irrelevancy.  Honestly, I've never experienced ANYTHING like this before and don't know what it is I'm dealing with.

I have no appetite whatsoever, and food doesn't even taste good anymore.  You'd think I'd get some benefit from that, like weight loss.  But no, thanks to the prednisone after-effects I can eat less than 1,000 calories a day and not lose a single ounce.  yay.

You're probably thinking "Oh, that sounds just like depression!"  Well, perhaps.  Except.. depression makes it so you don't WAN'T do do anything, go anywhere, and while it comes with physical pain, etc... what I'm dealing with isn't quite like that.  Oh, I GET depressed--but who wouldn't?  My mind and spirit WANT'S to do things again, not spend most of my time in bed (literally), wants to go places, take my camera and explore, and have at least an ordinary life if not an extraordinary one.  The DESIRE is there, buried deep beneath weakness, fatigue, pain, nausea, and so much more.  It's there, but it's being held hostage at the moment.

My life now, day by day, is marked by two thoughts: Morning: "Maybe today!"  And evening: "Maybe tomorrow!"

Is THIS my new normal?  Is this all there is, all I have to look forward to?  Will I ever feel good again?  Will I ever feel anything but pain, fatigue, and discomfort?  Will I ever have JOY again?

Will I EVER feel good or experience joy again?  Will it always be about pain, misery?

Will I really have to spend the rest of my life feeling like I have the worst case of the flu 24/7?

Will I ever... get answers to those questions?

Carrying on, but on a different path of approach...

So, as you guys may know (if you read my entries) my health has been chaos over the past year or so.  Okay, so before that too, but lately it's hit a whole new level of 'bottom.'  It is what it is.  Recently, due to being pretty much bedridden I began to wean myself off as many medications as possible, and so far... it's not helped.  But I think what's left to explore is possibly key.  About that in a minute.

I'm on a few medications.  A blood thinner due to a TIA in 2013 attributed to Afib, etc. I had ablations for 3 arrhythmias.  Two different medications for GERD, two different medications for (embarrassingly) chronic IBD, a statin, Prednisone and Imuran for AIH.  Over the past week I completely ditched the statin, and I ditched the Imuran shortly after weaning off Prednisone.

Yes, I'm at risk for a flare up of AIH by stopping the Imuran.  I don't care.  QUALITY of life is far more important to me than how long I live.  It's a weird thing to have to face that reality, but.. there's a chance the AIH may not flare again for a year or two.  We'll see.

So where I am, briefly because I feel horrible and am weak, is in hormone hell.  After taking the Prednisone for 3 months that has likely suppressed my adrenals, which affect other hormones...

Okay... sorry, but my arms are aching badly just from typing.

Sheesh.  More later.. I hope.