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

Life.  Amiright?

Audio Blog continues...

Healing being what it is, and a slow process at that... audio blog continues.  Rants, etc....

Pushing forward....

Still dealing with shoulder surgery recovery (a very long process), so I've made another video so I can at least keep up with entries somewhat.  Thanks for visiting....

Risk for Redemption.

I played a bit with the idea of composing an audio/vid for myself, just something to remind me that there was, in fact, a time when I felt like a normal human being, when pain was minimal and sometimes absent, when I could behave normally, when restrictions of body (and now spirit and emotion) hadn't taken hold.  I know I used to feel better and actually participate in L I F E.  But for the life of me, my mind edits at will and separates the now from the then, the me I became and the me I once was.  So to keep it all in perspective... I made an audio movie with pics ranging from 8 months ago to 4 years ago, before this big crash in everything that is 'my life' and 'me.'

I was hesitant to upload it here (still am), but a friend of mine said "Do it.  Put it ALL out there, and to hell with what anyone thinks!"  It feels odd to see my own face all over this video, but... it's mostly for me anyway, something I can look at and recall that L I F E was there in me, and maybe.. just maybe... I will start believing again.  enough of the typing... arm aches horribly.

The compilation set as a reminder of where I once was in my L I F E and H E A L T H, remembering a healthier, happier me... taking a risk for redemption of myself, an apology to tell the woman I've become.... 'I'm so sorry I let you down."

Experiment #1...

Hi everyone.  While my shoulder heals I'll be making audio entries in my blogs, rather than typing.  Hopefully this will be short-term.  As I stumble to find my footing and get used to recording what I have to say... just bear with me. ;p  Thanks for your patience.  Please note that this is an experimental recording to test how it works, so look for more with actual content and focus very soon.  :)

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.

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.

Well. Damn.

If there's anything that I'm NOT afraid of it's doctors and needles.  I don't mind a shot when necessary, and I don't mind blood work or IVs when needed.  However, one thing I discovered today is: I rather NOT okay with giving injections to myself.  And that, unfortunately, is what it's come to... at least right now.

So I saw my Endocrinologist today regarding my lab results for Cushings, Adrenal Fatigue, and... blood sugar issues.  The latter was a big concern because I ended up with Cushing's Syndrome while taking Prednisone, long-term (approximately 3 months).  My allergist stated flat-out that I would be lucky NOT to end up with Type II Diabetes due to my reaction to the Prednisone.  Lovely.  Especially given that my mom and oldest sister both had it (both deceased).

I have other health issues so the drug my doctor wanted me on can't be an option right now.  Lucky me, instead I get an injection... a treatment for Diabetes that's used for PRE-Diabetes/Insulin Resistance--which is where I'm at right now.  Damn.

Serum fasting glucose, Glucose Tolerance Test, AND serum Insulin were taken to assess IF I were in trouble and how badly.  My fasting INSULIN was double what it should have been, my fasting glucose was 111, and at one point... my fasting glucose (in the past few months) was 123.  I had NO idea about that 123 FG.  So here I am having to give myself a lovely injection in my abdomen (skin) once a week for 2 weeks to see if I need to continue that or not, long term, OR... if she's going to put me on another protocol.

The GOOD news is, at least on this one test, my adrenals are perfectly fine and right in the middle of the normal range.  She doesn't completely trust it so wants to test them again in 2 weeks to see where it is.  I also have to have my A1C tested again in a couple of weeks.

It's begun.

I'm NOT looking forward to giving myself an injection, even IF it's an automatic device and pre-loaded.  Just YUCK!!

I have hypOglycemia symptoms and have had those in the past.  I won't explain the process here of what happens BEFORE a person ends up diabetic, etc., because it's more time and energy than I have right now.  But hypOglycemia symptoms suck pretty bad.  Weakness, shaking, fatigue, cold sweats, headaches, etc.  What fun.  However, we're not exactly sure what's causing the chronic pain.  Endo says she also wonders about a myositis situation given the elevated Aldolase on a couple of occasions.  It's not elevated NOW, but I also was on prednisone and Imuran for 3 months, so that took care of any inflammation there might have been in my muscles.. causing muscle breakdown.

I don't know how anyone will ever be able to nail down the cause of the muscle pain after my having been on corticosteroids.  I just don't know.

Well, the pain is pretty severe so am going to sign off for now.  Wish me luck in the morning when I have to give myself my first injection.

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.

It's My Blogger, I Can Whine If I Want To, Whine If I Want To.....

You would whine too if it happened to youuuuuu! No, not really.  But it made for an intro that invoked a smile, even if a small one, right?  My busy week has left me wondering, unsure, and stuck in a health loop that I'm not sure will end easily.  Wow.  Like THAT doesn't sound familiar.

Life being what it is we just need to get things off our chest or deal with the consequences of, well, holding it all in until we lose it.  Right?  Right.  I suppose many people have their own way of dealing with or working through things life tosses their way, but for me.. I have many outlets.  Blogging, however is the one remaining on my list that I can actually use at the moment.  So be it.

I already talked about the elevated ferritin, so I'll leave that one be for the moment.  I saw an Endocrinologist yesterday who believes I have (((( wait for it  )))) Adrenal Fatigue caused by (((wait for it again! )))... long-term use of Prednisone.  I knoooooooooow!  *Putting on my best shocked face*  Basically what this means is that the prednisone put my adrenals to sleep and I have absolutely nothing to help me with ANY kind of stress.  I've been stressed for YEARS; Chronic, nearly 24/7 unbelievable stress, both emotional AND physical.  Then, I have to do a 12 day Pred Pac last year, then 3 months THIS year.  The thinking is that, because I went into Cushings Syndrome, my adrenals shut down.  And this is what happens when you develop Cushings.

I have almost every single symptom, and my Endo doc recognized what it is.  It can't be confirmed without blood work, and I got that today.  And tomorrow, because of the Pred, because of the Cushings, because of the possible adrenal fatigue.. I have to have glucose testing to see if my pancreas is damaged and I'm edging, or IN, the throes of diabetes.  My serum glucose is not showing overt diabetes, but that doesn't tell the entire story.  Type II diabetes is one of the more common side effects.  Nifty, huh?  *sigh*

The other appointment I had today was with my bone doc.  Got the MRI results back, and as suspected, I have a torn rotator cuff.  Surgery, because my arm is UNBELIEVABLY painful when I move, is the only option for me.  Day surgery, they'll repair the tear, file bone spurs, and send me home with pain meds and a few restrictions for a while.  There are two problems with proceeding right away with surgery is the fact that I have been on Prednisone and it was 'long-term.'  The other problem is the possible adrenal fatigue.  You can't add additional stress to the body when it basically lacks any defense.  Suppressed adrenals are VERY bad news, and in this case it would mean my body couldn't handle the physical stress of surgery, even minor surgery.  Getting upset at someone will shut you down completely when your adrenals are "asleep."

I can't go into all the details about adrenal fatigue because, literally, it would take a research paper to explain what it is in detail as well as the processes involved.  It's progressive if it isn't addressed and quickly.  People can be heading down that road for years and not even know it, and if you're on that road already... prednisone will push you right over the edge.  And it will.. WRECK. YOUR. LIFE.

So where I am right now in this is simple: Wait for blood test results to see IF what I'm dealing with actually IS adrenal fatigue, and go from there.

Not much else I can do.

Guess I'm done for now... arms too tired to type much longer.

Oh... hope you like the song I left for you guys....

Lucid Dream..

I had my first lucid dream.  At least I think it was my first.  You know how dreams are... some of them you just can't remember.  But this one was pretty clear, and it had the usual recurring theme as my dreams tend to have, which has been the way of my dreams nearly my entire life.  There are basically 3 recurring themes, but I won't get into those now.  But as dreams go, this one was quite different then all the others.

The dream:

I was home, in 'my' room doing nothing but sitting quietly on the bed and looking out the window.  Clouds outside were very low, dark, broiling... and they shifted into what I recognized as a tornado (common theme in my dreams and not in the least scary, btw).  I jumped up and ran into the living room looking to see what damage there might be, can I yelled out to T that there was a tornado.

I could see the deck out back was damaged, the railing torn, and some trees, etc. were damaged.  I then walked into the breakfast nook area, and this is when I noticed the furniture was different, the room was different, and outside the breakfast nook window was another room.. instead of the deck and gorgeous view.

Once I realized everything was different I stopped, turned a little bit and told T... "Oh.  Never mind.  It's is just a dream." I then just looked around quickly, amused that I was dreaming.. then woke.

Weird.

And I don't mind weird at all, but... I felt in my dream, as I do after waking from an interesting or otherwise really good dream, rather.. disappointed.  Perhaps it was because I felt as if I had control of things in the dream, and much less so than in real life.

Whatever caused this lucid dream--I hope it happens again, because... I rather liked it.  Honestly, I wish I felt in real life the way I do in my dreams.  Why?  Because it's more like 'living.'

"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....

Getting it ALL off my chest.

Well, it's a little cathartic to be able to vent, to scrutinize, to assess, to get it all out when something's bothering me.  If you want to know exactly what I'm talking about... it's HERE.  PART I and PART II were needed as this was, well, you'll see if you're curious enough to go there and read.  The discussion was about Beta men vs Alpha men and the necessary balance of power in a relationship.  I'm past that now, moving on, and wondering what the hell I'm going to do about my life as it is at the moment... not much of a life at all.  Aren't I always struggling with this?  Don't answer.

Exhaustion overcomes on the other side of stress.  I'm pretty much there at the moment and fighting like hell to defeat its encroachment.  What I'm left with is a familiar struggle to find my strength and focus again.  It's okay.  It is what it is.

I have to face each day like I don't remember the one before.  I can't allow myself to have any regrets, or allow the sense that I lost yet another 24 hours of my life.  There aren't any do-overs.  What I do is wake and think to myself.. "Today is the day."  It's a mantra of sorts, and one that has yet to actually work.

I'm spent.  Working on those two hefty entries has left me with virtually nothing.  So, if you're curious... click on the link above to read the most of today's crapola.

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.

......