Wrapped in music and questions...

Maybe recent health issues are stirring things a bit, bringing the treasures to the surface like waves tossing beach glass and shells onto the sand.  I can see so much through those every-moving waters.  There they are---gifts, offered and pulled away.

Spent the majority of last night listening to music.  To quiet those whispers within that speak wether I want them to or not, even in sleep.  Sleep...always there in the shadows of a small room with tall windows.  Life's graffiti splashed upon the walls.  So much color there, moving by candlelight.  It's only memories, sometimes animated in dreams.  An unwilling passenger on a ride destined to never end.  And yet I'm here, finally, opening my eyes, stepping closer to those walls to see.  I just want to see.  Afraid to see.  I want to turn, to squeeze my eyes shut.. tight.  To run.  To run.  Because it's all there in full-blown color, splashed, swept, carefully drawn.

Careful.  Don't look.  Just don't.

Not a single moment of respite from the memories.  Awareness is all there is.  In so many ways I welcome this.

Liver

One word that can change everything.  Who focuses on their liver?  No one.  But maybe we should...

Short and sweet for now, because I've told all in my other blog.. Where Fireflies Dream.  But basically my blood work came back showing Stage 3 Nonalcoholic Steatohepatitis (NASH).  It's hereditary, and it can happen to anyone.  Precursors are usually diabetes, excess weight, and a few other things, and people can have this for years without ever knowing.  Liver enzymes can be elevated during one test, normal the next, and varying degrees of both.  So some actually have no idea they're dealing with it until they have symptoms, or when it shows up on labs.  Either way, one must be their own advocate if faced with this, because too many GP's shrug it off and try to treat it themselves.  VERY BAD IDEA, to say the least.  This disease should be dealt with and monitored by a GI specialist.

Right now I'm still in the waiting game.  I have a follow up to discuss my lab results next week, and in a couple of weeks I am scheduled for an EGD and colonoscopy.  Duodenal ulcer is suspected as well, so the EGD is basically for that.  Now, whether or not he decides to to a liver biopsy at that time remains to be seen.  Grading criteria with labs is such that, in many cases, a biopsy is unnecessary.  However, in the case of NASH, because of the inflammation and damage doctors often opt to do the biopsy.  NASH, btw, is the more serious form of NAFLD (Nonalcoholic Fatty Liver Disease).

There's no actual 'cure,' but there have been cases where treating with diabetes meds help... even if one doesn't have diabetes.  Specific diet changes and exercise is really key to helping to stave off the progression of NASH into cirrhosis.  Many times with NAFLD people have been able to reverse the effects and heal their livers.  But if they revert back to anything that caused the issue to begin with (not controlling diabetes, eating a bad diet, etc.).. NAFLD can return.

Prognosis really depends on the individual case, how much damage is done (if any), etc.

This is all I have for now---shortened here due to feeling like crap and having posted the whole thing on Where Fireflies Dream.  I'm tired, and it's time to chill.

till next time.....

Being me: I often fail. But I always try.

Wow.  Talking about getting things out in the open about communication.  Posting what I did on Where Fireflies Dream was long overdue.  I could say it was difficult, and it would be the truth, but it was also very necessary.  What I deal with every day sometimes means I have to keep things inside more than I should (if that phrase even made sense).  And when it comes time to spill the contents of an otherwise overflowing mind, well, I have no real idea how it will land on the page (so to speak).  Still, what fun would it be if I always held back?

Maybe I talk too much here lately about my health issues.  Don't know.  What I do know is that I need to talk about it so I can sort through it all and find out exactly where I am with it all.  Do I accept what I'm told?  What do I do with the waiting, waiting, waiting?  How do I expect of others?  Do I give in and let the current take me into what looks like dark waters, or do I hold on and maintain the familiarity of who I am?  I don't know where this all will take me, but I have to remain me no matter what the outcome.

I've spoken a lot about living with someone who is indifference-with-feet, so I won't revisit that except to say it's my reality.  Looking for the place to draw the line in the sand with that has also been an investigation of sorts.  I really need those answers.

As for what's keeping me in this odd limbo is not knowing what my diagnosis is.  Yeah, it doesn't help to know what others have gone through, seeking answers for years while living with symptoms, etc., especially in the absence of a support system.  I can do this alone, but I really need to know what I'm dealing with.  Anyone get that at all?

Being me.  Sounds so freaking simple, doesn't it?  I mean, how can we not be ourselves, right?  It's amazing what changes when dealing with the unknown of this nature, unsure of how your life will be like going forward with X, Y, or Z diagnosis.  Never mind the effects of not having one at all and living with a mystery until someone figures it out.  Blood work, etc., doesn't always reveal what's wrong in a timely fashion.

Oh, and where's the coping mechanisms that keep me grounded?  Hell if I know.  Good days, bad days, dealing, not dealing, hope flourishes then fades.  Damn.

Being me.  Hanging on and remembering who I am.  Every day.  Wondering how I reach out and connect when it feels like I don't have the strength.  Remembering how I used to feel.  Seeking absolution in strange places.  Finding peace in hidden places.

I suppose my words sound random, unfocused, impotent.  Okay.  I'll give you that.  But isn't that what journals are for?  I often write when I can't talk.  Making sense isn't always the goal, at least on [virtual] paper.  Sorting through the confusion and the unknown isn't easy for me right now.

*sigh* Most of my confusion comes from facing the unknown.  I just wish I could get the answers I need to know how and when I can proceed.  Tick tock, Dr. V... I need those test results.

In a matter of speaking, I haven't a clue where to start

I only need just a moment to catch my breath sometimes.  The indifference in who I must live with is stealing my ability to breathe and thrive.  Sleep doesn't come easily, nor does clear thinking in the midst of the deadpan canvas on which this life is painted...

I know what to do.  I just have no clue where to start.

Stuck?  Not stuck?  And how do I go about any of this while in my current state of health?  THAT is a really good question.

By the way, if you're a little confused by my words... just go to Where Fireflies Dream (one of my other blogs) and you'll find some clarification there... by now, I think you guys know how this works, how I tend to write between the blogs.

So now I wonder where I go and what I do to begin healing.  And oh my God, this is going to be a long damn road.  Crap.

Just one more day trying to figure it all out.  No worries--I don't spend all of my time on this.  Only in those precious moments that I have to myself am I able to talk about it, in a matter of speaking.  The word "Talk" being used loosely here.

I need a leg up on this.

A set of expressions

I'm worn out from posting in two parts on one of my other blogs--Where Fireflies Dream.  So forgive me if this is less than scintillating or entertaining.  What you'll see here is a little bit of what's left after unloading.  It happens.


In the midst of doctors' visits, lab work, diagnosis' that have, till now, been ridiculously vague, I feel exhausted inside and out.  Doesn't mean I've given up---just given out.

"You have Myositis," he said.  But even as he spoke with certainty he left room for the possibility that this isn't the case, and mostly I think that because he ordered more blood work to repeat labs already done (that were abnormal), and to add a couple that weren't previously done but needed.

Duodenal ulcer will be confirmed or discounted as a Dx when the EGD is done in 3 weeks.  Autoimmune Hepatitis.. unsure how he intends to proceed with confirming or discounting that one.  My follow up appt is 2 weeks after the procedures.  I have a long wait ahead of me.

As I wait for the new lab work results, I can't help but feel somewhat anxious.  Myositis being a diagnosis mostly of exclusion, I know that what 'may' lie ahead isn't going to be cut and dried nor easy.  C'est la vie.  Right?  I know this and can accept it.  But it's not easy.  I truly want someone to finally tell me what's wrong and what's to be done.  It's long overdue.  And yet, from what I've discovered during my research is that most people go to several doctors before getting a diagnosis.  In my case, I think the buck will stop with Dr. V.  He knows his stuff.  He obtained his degree at Johns Hopkins and chose to come back to AL to be near his family.  He seems very confident in what where he's going with all of this.

But DAMN if I just wish we could get on with it so I can begin the process of healing.

This waiting sucks.  And this waiting really sucks because I have to do it alone.  Blogging about a little of it is all I really have.  So be it.  Hopefully I'll get my life back once we figure out FOR SURE what's going on and how best to deal with the problem.

Till next time.....

Does knowing help?

So I've really unloaded on one of my alter ego blogs, if you guys are interested in reading.  It's on Where Fireflies Dream.  All the info regarding my appt with the specialist yesterday, findings, etc., etc., and even a bit of an unloading of things on a personal side of things.  I'm not sure what I'll have left for ATE, but I will try.  Forgive me if it all comes out more as musings than actual accounts of what transpired yesterday--all of that has been purged to the other blog.

I feel a bit like I'm standing on a cliff over a wide expanse of beach and ocean.  No.  Not really.  That's simply my desire.  Where I actually am is in a vast and vacant desert of which no life can sustain.  It's temporary and will last about as long as it takes to process the information I received from the doctor yesterday.  Though, being scared at the moment is hard to shake, I'll admit fully.  I mean, how can you just receive news like that and not be affected?  I'm shaken, and that will likely pass in time.

I'm waiting at the moment for yet more blood work results that will, or will not, or suggest, etc. if one of the major things I'm dealing with is Myositis/Polymyositis.  I'm praying that will NOT be the case, that my Aldolase is significantly elevated for another reason, that the unbelievable muscle weakness I have is due to something else entirely, that all these awful symptoms will be explained away easily and be the effects of something else entirely.  Hell, at least if it's autoimmune hepatitis it can be managed, and worse case scenario... a transplant is needed if it's gone on too long and did too much damage.  Hell, at this point there's nothing in my blood work to show there's liver 'damage,' just the implication that the liver is in terrible distress for some reason.  But Myositis/Polymyositis... a much more bleak scenario.  Then there's the great possibility of an ulcer...

I have an endoscopy and another colonoscopy scheduled in 4 weeks, and a liver biopsy may be needed (yet to be determined).

This is what I have to work through, and do so alone.  No siblings or relatives I can talk to, get encouragement from, no one to make happy memories with really (that's explained more fully on Where Fireflies Dream.. alter ego blog links are in the side menu).

So what now? What do I do, where do I start, how do I not lose it a little bit until I can wrap my head around what may be happening, what my doctor is convinced is happening?  How do I do this alone and in a city where I still don't know anyone?

Feeling poorly so have to sign off and find some happy thing to focus on, watch something on the boob tube that will make me laugh.  Damn, wish I just had someone, a friend, who knows me well and that I can talk to...

Until next time...

Dealing with it Vs Fixing the issue

The line blurs so completely between the two at times... maybe that means... both?  So what is it I'm saying here, exactly?... Communication.  Respect.  Kindness.  Manners.  I mean, didn't most of us grow up learning about this stuff to some degree?  Or, at the very least, when we become adults we should know better, even so.  Whatever.  After a while my tolerance slips below a VERY well-defined line, and its effects are immediately felt, and totally unwanted.

Listening.  Being attentive.  It's not always easy, because these days everyone's mind is on 'something.'  But we have to choose to listen, pay attention.  I make allowances for people who are easily distracted, because not everyone is a master of focus. I'm certainly not.  ADD is just something I deal with and have to consciously work with.  So, I absolutely do give some leeway when it comes to some situations.  But when a person ACTIVELY tunes you out to the point where you're talking to yourself most of the time---screw that.  And it goes much deeper than just not listening.  It's also a deadpan, utter indifference to what's going on with my health and how it affects me.  The one person I have close-by to talk to... is completely deadpan about it.

No use wasting my time and energy trying to open up and talk to someone who doesn't give a crap.  Yeah.  I'm a little ticked at the moment.  I've come a long way over the past 3 to 3 1/2 years learning to actually ALLOW myself to feel angry about things, to express it.  Holding it in, I found, is damaging.  I'm calm, but I'm also ticked.

There's nothing okay about ignoring someone who's talking to you.  If you're not interested in what that person is saying---say so!  Don't be one of those people who fake their way through a conversation.  Politeness, being what it is, warrants our behaving kindly when someone is talking, even if we don't find the subject all that interesting.  But when it comes to the important stuff and the important people---pay freaking attention!!!!  Or not.  Just know the latter comes with consequences.

It becomes habit, tuning someone out.  With enough 'allowed practice' one can become QUITE adept at it.  It's not a virtue.  So I don't understand why anyone would want this to become a part of who they are and what they're known for.  I don't understand why anyone would allow and nurture, even by default, such undesirable a quality.  Especially when it hurts people.

My tolerance has been waning for this type of treatment for about 3 or so years now, and I believe I've reached the point---FINALLY---of intolerance.  That's not a bad thing.  What's bad, even unhealthy, is to live in the context of someone else's indifference.

I'm already disconnecting with this person, emotionally.  I have to.  I can't allow this treatment to affect my health, my happiness, my joy.  I won't allow it.

So what do I do now?  Focus on me!  It's time.  It's overdue.  A lot of damage has already been done, and now I'm in 'damage control' mode.  And I have a lot of healing and work ahead of me.

In the meantime I am going to make sure that any of the bad feelings I have are vented.  Yeah, that will most likely happen here.  But purging that stuff is critical, because holding it inside, or doing something to cover it up, forget about it, etc... is damaging.  You can sugar-coat crap, but it's still crap.  Get RID of the crap!

Onward...

Damn these dreams...

It seems to just be a constant nightly thing now.  Dreams come, unbidden, that point out how much my life isn't actually my life, and it does this in a very poignant and, in some respects, ruthless ways.  Do I question this?  Of course!  Everyone knows, or should know, that dreams are your subconscious trying to work issues out that the conscious doesn't want to deal with.  Having said that, it's gotten to the point where my dreams leave no room for interpretation.  In fact, they're as blunt and outspoken as an unpaid whore.

Seriously.

Last night/this morning, dreams that leave me haunted and anxious after waking.  Places I want to go and can't (right now).  People I don't even know...who I miss, somehow.  Unnatural forces in times or places with unfamiliar faces.  They're all friends it seems, from a life I don't recognize myself in.  Damn this night.  Just fucking wake me up already.  Right?

Those faces, those people.  Dreaming about people you've never met isn't exactly unique.  And my dreams have included people I DO know and don't have contact with any longer.  It's all just a messed up, complicated message that I don't have the capacity to interpret right now.

...All I have to go on is how it leaves me feeling when I wake.  A bit confused and bewildered...and feeling as if I'd missed the only train capable of taking me where I need to go.

I'm sure it's meant to be motivating.  But motivating me to do what is the million dollar question.

Damn these dreams.  I guess I just need to work on getting my subconscious to reveal what it's REALLY trying to tell me.  Enough of the guesswork already.  M'kay?

So...it's going to be later today (I hope) when I get to the entries for the Alter Ego blogs... links are in the section to the right.  For now, I'm saying adios.  Time to login to life for a few....

Dreams--OMG, just stop it!

Insomnia isn't one of the highlights of anyone's day/night, but it is my reality for now.  I won't go into all the factors involved, but handling the liver issue and finally getting the new mattress delivered will be a great start to things.  In the meantime, I deal as best I can.  And what this means is laying in bed, awake, until anywhere between 2am and 5am.  I never know how the fabric of my night will feel until I'm actually there---wool or velvet, clouds or chainmail.  Either way, sleep eventually comes, and with it... the dreams.

Recurring dreams are also a part of my reality--and it's been this way since childhood.  Similar themes, but rarely ever the exact same dream, all leaving me to wake up feeling positively haunted.  Not as in actual ghosts (that's another talk show), but ghosts of my past.  No, this isn't unique or unusual, because most of us, if not all of us, have dreams of this nature.  I'm definitely not saying mine or more or less extraordinary than anyone else, but they are extraordinary to me.

One person in particular ends up being the star of the show, and in a way that is truly unsettling, especially when I end up waking up bewildered, confused, and feeling... *sigh*.. never mind.  I won't dwell on something I cannot understand for the life of me.  Yeah.  So I tell myself.

The situations, the symmetry and context of these dreams are always curious in that they're not unhappy in the least.  Perhaps a little melancholy, but...still so incredibly intriguing.  Exciting places, beautiful houses, as was such in the most recent one (last night/this morning).  The part that sticks with me the most is sitting with this person on the porch of a white house... flowers in the tall bushes surrounding the area.. shade, soft breezes, a chair swing (also white)... having drinks outside while talking.  And the conversation eludes me, though I do recall it was extremely important.

Well, I'm sure my subconscious was paying attention...

So where does this leave me today?  Contemplating.  As usual.

Just...contemplating.

As 'enlightening' as these experiences FEEL like they are, it's too damn unsettling to do any real good, even IF I knew what the message is supposed to be.  So...dear, subconscious...if you're not going to allow me the opportunity to understand the message... dreams---OMG, just stop it already!

"Dig me up from under what is covering the better part of me." --"Dig" by Incubus

Music.  It's been the backdrop to my entire life.  Every song I love, and even some I don't, has a memory attached.  Playing those songs is like flipping the switch on... so I can see my life in increments, set to music.  It's not a bad thing.

The videos I post on my blogs aren't just some random, ill-thought-out entries to which there is no meaning.  On the contrary.  They very much have meaning and often expose parts of me I may not be willing to in any other form--at least at the moment.

I'm sure not all of you watch/listen to them.  And that's okay.  No harm, no foul.  But you do miss out on what's going on in my head when you do.

"Dig me up from under what is covering the better part of me" is from the song "Dig"..by Incubus.  And it has relevance for  a couple of reasons.  1.  The person it makes me think about.   2.  The lyrics.  It's okay to not understand this or even care about what it means to me.  This is a blog, a journal of my experiences, thoughts, feelings, rants, wishes, dreams, etc., and I don't expect at all for anything to read here and get who I am or what I need or...

I need to get off the computer and do something else.  IF you're at all inclined to listen... the entry below is the song.  But not just any song....  And this song.. isn't about who you might think.

Emotions being what they are often haunt my dreams at night.

Incubus - Dig

Enough with the platitudes already...

Tanking up on coffee today.  I slept out of exhaustion, finally, and I feel a bit better than usual.   But I still need that boost of caffein, even so.  Not exactly sure how this whole thing works, trying to find answers on my own to ALL of my questions, and consulting Google isn't providing me with anything I can work with.  In fact, Google actually ends up proving more questions, and very few answers.

To what?...

To everything.  Don't you hate it when I don't get to the point?  Yeah.  Me too.

I don't even know where to begin with what I need to say today.  My thoughts are all over the place, which is pretty common these days.  I don't understand what's happening to my body with all the significantly elevated liver enzymes, and I don't understand at all if that is causing this RIDICULOUS and totally UNWANTED fatigue, aches, pain, and soooooo much more.  And it seems that no one can help me understand it, either.

I long to feel like myself again.  And if I were to be completely honest here I would have to say that, on the really bad days, it feels as if I won't every feel like me again.  It's the kind of truly debilitating stuff that tries like hell to wreck hope.  Screw that!  I'm not having any of it and will fight that to the end.  Oooh, but I can hear the wheels spinning in at least 2 of you who are bothering to read this.  Yeah, and those wheels produce a lot of insight, I know....

...'Don't be so negative!'

...'You're attracting that crap!'

...'You're focusing on the wrong things!'

...'Think positive and things will improve!'

I can hear your voices. lol  And I'm not disagreeing!  But anyone who has dealt with chronic pain and fatigue knows all too well how you can get completely worn down after it goes on for so long.  It can break you if you're not careful, and if you don't have a good, solid support network.  Which I don't.

Yes, I know..I know.  A person only needs themselves to right things.  I get it.  I do.  But again, even strong people need other people sometimes.  Even strong, determined people need encouragement from others.  It's human nature.  That's where I am right now--I need someone to talk to.  But who?  Which brings me to the other end of this situation...

People, please....

"Well meaning/good intentions" don't cut it.

"Weak platitudes" don't cut it.

"Disingenuous remarks" don't cut it.

"Cookie-cutter advice" certainly doesn't cut it.

"Bullying or controlling behavior" definitely doesn't cut it and hurts.

"Indifference" not only doesn't cut it, but it's harmful and hurtful.

There comes a time when people need to assess whether or not their intentions are to help someone, or if they simply want to feel important, like a hero, or just want to snuggle up to their ego.  There comes a time when you just need to shut up if you're not actually speaking from the heart to someone who needs support, friendship, etc.

Agree?

Get real.  Self-assess.  Ask yourself the right questions before you speak.  Because playacting at giving a shit isn't the same thing as actually giving a shit.  If you're rusty, well just pick something to give a shit about and PRACTICE.

I can get indifference from anyone.  My dog has more warmth than some of the people in my life, which is why this struggle has become... a struggle.  I can't thrive in an environment of careless indifference,  you know.. the kind where someone isn't exactly doing it on purpose.  Careless indifference, to me, is worse than stark indifference.  At least with the latter the person is aware of it, acknowledges it, and takes responsibility for it.

Now I'm just ranting.  But... if not here, where?  Right?

No idea how to resolve this.  So far it's me, myself and I, and that's not cutting it either. lol

Damn.