Treasure

Self, repair, healing... where once the pain urged a retreat, I can now see the magnificent sculpture those tumultuous waters made in their swirling, crashing and sighs upon the sand.  So many treasures there, just swept below the surface, just there within reach. And the low whispering of those memories have made themselves known.  I am there.  Here.  Still.

Weakness, pain... sleepless nights in a backdrop of music, stirring the once-calmed thoughts and memories like waves tossing treasures on the sand.  Little gifts, once buried, now swirling between the deep and crystal blue surface of awareness.  Awareness.

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.

....With Fava Beans and a nice Chianti

Okay, okay... rather dark humor.  But where would we all be if we lost our sense of humor in the midst of any weirdness in our lives, right?

So the new set of labs my GI doc ordered came back, and I have a follow up appt with him next week to talk about the results.  As of now, according to the lab who ran the tests, scoring based on lab results, etc... looks like they're saying I have stage 3 NASH.  Nonalcoholic Steatohepatitis.  Basically, fatty liver disease that's progressed to a more serious level in which inflammation and damage is occurring.  This type of liver disease can happen to anyone, btw, not just people who are overweight or have diabetes, or on meds that trigger it and do damage, etc.  Many skinny people have it, and many don't know they do.

Liver enzymes, as it turns out, can go in and out of the normal range, which is why people can have this problem for years and not know they have it.  If you get your yearly blood work done and all looks fine... you still don't need to worry, unless you develop symptoms that prompt your doctor to investigate further.  But you have to be your own advocate when it comes to your health.

NAFLD and NASH have a genetic component.  In other words---it's hereditary.  Unfortunately, I didn't have access to my dad or his relatives, his health, etc.  And my mom kept most everything to herself, with the exception of my oldest sister.  I was never told anything, really, except what was blatantly obvious going on with her.  My family situation is, and has been, off.  WAY off.  And I don't have access to my siblings, nor do I want to.  But knowing what I know about myself will at least help my kids and grandkids.  They will at least have knowledge of what may come if they don't take very good care of themselves, especially their liver.

Symptoms.  I'll deal with them as I have until this point, but there's basically nothing I can do but wait for my appointment next week and take things on a day-to-day basis.  It's what I've been doing anyway, so no change there.  Still, the symptoms suck, no matter what I do.  The worst is the pressure in the upper part of my abdomen, the dull aching pain that accompanies me throughout every day, the sweating that is often triggered just by sitting up straight.  There are several symptoms, let's just suffice it to say I have most.

What exactly IS Nonalcoholic Steatohepatitis?  It's exactly what it sounds like.  It's a form of liver disease that is NOT due to alcoholism or heavy drinking.  It would be pointless to re-invent the wheel, so I won't even try.  A Google search will bring up plenty about this problem, but be sure to go to good sources, because you may not get the whole picture.  Many health issues can cause this, and sometimes it happens... just because.  You would be surprised what can trigger this disease.

I'm uncomfortable, and it's my hope that when the time comes and we're at a 100% certainty level... whatever I do for this will get rid of the discomfort, pain, and otherwise miserable effects.

I will wait for my appt next week, wait for the EGD and colonoscopy, and see if they will be doing a liver biopsy at that time as well.  It was mentioned at my last visit that I may need one, so why not while I'm under already?  Get it over with and make good use of my drug-induced stupor.  It will be up to the doc, though.  The lab work they do for this includes a grading/staging algorithm that they use to determine stage/grade of the disease.  Many times they opt not to do a biopsy, but it depends on the situation.  NAFLD... could go either way.  But NASH...doctors often opt for the biopsy simply because of the inflammation and damage that occurs with this level.

We will see.  As for now.. I'm tired an am going to put this on hold for now....

Laters taters.

I often fail. But I always try: Decoding simple answers from someone with chronic pain/illness.

It's a measuring tool for the curious, or simply the polite.  The question that is always expected to have the same answer.  What is real, or truth, or truth hidden behind a protective veil is not always evident to others---it's rarely ever meant to be recognized.  And yet the questions come, in part, from those who fail to realize... they shouldn't have asked to begin with.

Decoding the usual.  "How are you?" is offered by the polite, and sometimes they actually want to know the answer.  Well, for someone who has chronic pain/illness this is one of the most difficult questions to answer, so we have to know, specifically, what it is you actually want to know.  That long pause after you ask, that's the wheels spinning while we figure out how best to proceed.

The short route is going to be quick AND expected.  "I'm fine."  On the surface it sounds okay, believable, and luckily... we're not asked to expound.  Now, before we go further with this, allow me now to show things from MY perspective.  I'm not sure either of us is ready for this. lol

The question: "How are you?" is often where it all begins.

Decoding the answers....

"I'm fine" rarely ever means I'm actually fine.  Decode that reply and you'll know what I'm actually saying is... "I don't know how to tell you how I feel, because I'm betting you really don't want to know."  You're still in safe territory here and can relax.  But pushing could mean trouble.. for both of us.

"I'm okay" is a bit tricky, because what often follows is.. "Just okay?"  Once that door is open there is little way to close it again, and you're going to find out exactly what "Okay" means to me that given day, and this could go anywhere.  It could be worse, though, trust me.  Escape at this point is possible... if you act quickly.

"I'm good.  Hanging in there" is pretty much a red flag that things are very wrong.  Here is where you should tell yourself... "Don't ask the question if you don't want the answer."  Translation:  Run like hell!  Everything I've been dealing with has overwhelmed me, leaving me torn between "Help me work through this" and "Leave me alone!"  That middle ground is dangerous, because even I don't know how I feel.. other than like shit.  At this point, you're probably screwed.

And just when you think it couldn't possibly be worse... you know you've entered the place of no return when I say "Fine," because there is never really going to be any such thing in my life as just.. "Fine."  Ever.  Here's where it gets hairy, and here is the place where you're going to most likely end up in an uncomfortable silence as we both try and figure out how to proceed.  I'm not having a good day at this point and know precisely where I am and how I feel about anyone asking me how I am, and it's not going to end well for you if you ask again or push.  At this point..I may be too physically and emotionally wrecked to give an actual answer.  Run, Forrest, run!

Anything you say and do can be held against you.  Well, just saying to tread lightly here, because you are asking more than I can give.  Maybe you can sense this, which has left you with the moral dilemma of.. "Do I answer and risk what I know is coming, or do I risk looking like an insensitive ass and say nothing and move on?"  Yeah, this would be a good time to exit stage left, sound the sirens, call for backup, and otherwise get the hell outta Dodge!  If you hear "Fine" come out of my mouth, I can pretty much tell you one simple fact: You can't help me right now.

I never said dealing with me was going to be easy these days.  My pain, weakness, and the resulting effects have already beaten a lot out of me, and what I'm trying to do at the moment is to simply make it through the day without giving up.  *Without giving up.*

At this point I'm going to say may sound rather contrary, but it's important for people to know what it's like (inside) for someone dealing with chronic pain and/or illness.  You won't know unless you experience it for yourself, but maybe some of this will help you understand what just happened when you ask.. "How are you?"

Yes, please ask.  Most everyone dealing with chronic, invisible illness and pain, etc. really does want someone to care.  The question is comforting, even when it's not at all wanted, though the answer could be more than you want or expect.  Still---ask.  Never mind the answer, or how emotionally charged or depleted it may be.  Just ask.  It helps, though it may not seem so at the time.

And please be aware of why you're asking.  Because, I promise you, *I* will know.   I will know if you really want to know how I'm feeling, how I'm doing... or if you just want to know 'What's up?'  And if you feel indifferent, it will show.

It's not a girl thing that I'm talking about here.  It's not a gender thing whatsoever.  When you feel like crap most of the time, or are having a flare-up of whatever it is you're dealing with health-wise... even talking or interacting can become difficult.  There are times when we have to deal with everyday life, whether we feel up to it or not, and it takes a toll, one in which few can actually SEE.  Oh there could be subtle signs, such as dark circles under the eyes, not looking at all like yourself (which is often the case), etc.  But those are often not remarkable enough for most to pick up on, or if they are noticed they're often explained away.

I'm still me, though I often don't feel like myself.  I still have patience, but it's strained on many days depending on how long I've been in pain or feeling so weak that holding a cell phone is very difficult.  I still want to talk, interact, hear about your life, your passions, and have meaningful conversations; that hasn't changed.

I'm not that difficult to deal with.  Even on my most difficult days I fight to remain engaged, attentive, focused, and like 'the old me."  I often fail.  But I always try.

I am still me.

I wrote this in the context of mild humor, hoping beyond hope that anyone dealing with someone with an invisible, chronic illness can have a different view of what it's like to be asked "How are you?," because such a powerful question can elicit so many different responses in the absence of vibrant health.

Seriously.  This was meant to be humorous, though the content may have some sobering elements.

Bear with me.  Talk to me.  Take me out of the world of indifference I live in and into the light with you.

Those everyday reminders...

In the wake of the expulsion of thoughts and feelings I keep inside most of the time, there was a little bit of spillover yesterday afternoon.  It comes with the territory, actually, and I wasn't at all surprised that I'd let go enough to vent out loud.  I've expressed enough concerns and feelings about the indifference and the whole 'not-giving-a-shit-about-much" previously, but it was met with...ironically... indifference.  How can anyone be happy when something so bland and vanilla cake becomes a way of life for them?  I will never understand it, personally, and I've mostly stop trying to get that which is.. "un-gettable."  *snort*  Shit happens.

It was both draining and liberating to vent yesterday.  But it wasn't enough.  One 12 minute trip in the car with the master of indifference was all it took to take me right back to square one.  That can happen when you're trapped in the car with someone like that.  And it didn't go well.

An outburst.  Yep.  I had one.  Wasn't intending to, but the relief and calm hints of renewal and regeneration were no match for another slap with indifference.  Those wonderful feelings were just too newborn, far too fragile to withstand something so damaging so soon.  Nowhere to escape, all I had was my ability to expel the bad feelings when they came.  And so I did.

I think there is no worse place than to be in a car with someone who makes you feel so badly.  Without a safe place to retreat to, all that's left is to react.  In this case, it didn't make me feel better, but it did allow me to have a protective layer of indifference myself, born of just too many emotional jabs in all the wrong places.  It worked.  But I certainly don't want that feeling, or lack thereof, to stick around.  Time for action...

In order of find a solution, or solutions as the case may be, I have to shift my thinking, focus, perspective to one that allows me to create an environment that's conducive to positivity.  Not easy, but definitely possible.  I have to create my own environment and one that doesn't allow others to destroy my happiness.  So this means I had/have to ask myself what's REALLY bugging me.  Well, I already knew the answer to that---I'm forced to live in the same household with an indifferent person, one that isn't just indifferent to me, but also to far many aspects of his own life.  And the most difficult part of this is----he's content/happy to be this way.

Is there any reconciliation of two souls who are so vastly different?

How does one live in an environment that makes them unhappy and uncomfortable?  How do "I" live in that environment, more specifically?  Is there any way I will ever be okay with that, and how and where do I indulge in those things that make my life thrive...?  

Thrive.  That's a powerful component to living.  I don't want to just be alive.  I want to thrive!  I want even the most mundane experiences to feel like they're vital components to my life.  They're supposed to be.  They have to be.  Everything should be worthwhile, but we can't always guarantee this is going to be the case.  But why not?  Why can't they be vital?

They can.

Everything, however, loses its vitality when laden with unhappiness, unrest, indifference from others or even self.

Peace, joy, happiness, calm, and a totally whimsical backdrop to life's story.  Yeah.  I know I ask for too much, yet I can't help thinking that it's absolutely possible.

I just need those everyday reminders of what reality is right now... to just take a rest and leave me be. Allow me to breathe... just allow me to breathe.

PART 2: And the fine art of giving a shit.

PART 2:  And who gives a shit?

It really isn't a case of cynicism.  Yes, I can be just as cynical as anyone from time to time.  But this isn't at all about cynicism and more about just facing the facts of my life as I know it right now. Everyone has to face this from time to time, and sometimes... reality just sucks.

I've written enough over the past weeks (months?) about living with indifference.  Meaning... living with someone who is the epitome of indifference, someone who struggles to feel empathy or compassion, among other things.  But in the current environment of my life this is a strongly disruptive force to be around on a regular basis.  I've no family to 'run away' to while I go through the inevitable process of diagnosis, so I try my best to deal with it as best I can.  Many times, most times, my best just isn't good enough.

As you guys know, I often 'elude,' rather than state plainly in my blogs.  On occasion I will divulge details, but not enough to tell the whole story or paint the entire canvas.  My attempt now is to do just that.  I will leave room for error here, as it just depends on if, in my gut, saying so much is the right thing.

I will try.

It's a tired joke.  Men don't listen to women.  Oh, it's real enough.  But I call it a joke because, well, it is very much like a cruel joke.  Women need to talk---it's how we are built.  Men hate listening to women talk---it's how they're built.  But there are exceptions, I know.  As for me, I don't live with one of those exceptions, and this is wreaking havoc from top to bottom, from inside and out, and I find myself now reaching-reaching for a kindred soul.  It's just the way it is.   And the level of indifference on his part is so great that... he doesn't see or get what's happening.

Not being heard, literally.
Being 'heard' but not being heard.
Not actively listening.
Not responding to questions, statements. 
Indifference when the situation warrants compassion.
Being on auto-pilot 24/7.
......And oooooh so much more.

I'm not calling him mean, hateful, horrible, or any such thing.  He is the way he is, though.. it would have been nice for him to have shown me this larger part of him in the beginning.  But the damage being done is significant at this point, and I've nowhere to go to get away from this damaging force so I can breathe...and heal.

He's not in the dark about any of this.  He's been told in no uncertain terms how I feel, what he's doing, the effects it has on me physically & emotionally, etc., etc., etc., blah-blah-blah.

Several times now it has come down to my telling him... "PICK something and practice giving a shit about it!"  This, in the context it was spoken in, was very much overdue, very much needed, and very much appropriate.

Indifference is the way of the world these days, unfortunately.  Online network scenarios take people from REAL LIFE and place them in a facade of life that is misleading and driven by selfishness and ego.  Interactions are often play-acting, and people offer up weak platitudes in response to something real and life-altering.  Someone posts about a relative dying, and lo and behold... someone plops a MEME, of all things, in the comments thread as a response.  Really?

People say things like "You can call me if you need to talk," or "I'm here for you!"  But they most often don't mean it.  I've had that experience.

But it's such a different expression when real life situations end up exactly like that... and from your BF, GF, or spouse.  I mean, wtf do you do with that?

My nights are often fraught with stress and anxiety due to these very scenarios and situations, attitudes and behaviors.  After this long I've pretty much reached the end of my rope and have little left to cope with, especially in the face of this illness.  Coping with BS when you're sick doesn't happen without a hefty price to your health, both mental and physical.

Bedtime is me laying awake with my earphones in, listening to music, looking online for whatever, and trying to totally distract myself enough to become SO exhausted... that sleep is finally possible.  And it sucks.  But he's been indifferent enough that I'm completely turned off in every way, shape, and form.  And yes.  He knows this.  And he's done nothing to fix the problem.  I'm sorry, but indifference isn't foreplay.

I'm not kidding when I say he's not in the dark about any of this.  Platitudes are offered and forgotten.  Apologies are offered and forgotten.  Promises are offered and forgotten.  And the indifference, attitude, etc. and so on...continue.  Yeah... my libido exited stage left a while back.

In the face of so many uncertainties with my diagnosis, I could really use someone who's present and accounted for, at LEAST when they're in the same room with me.  It's not much to ask.

However, I've stopped asking or expecting.  I can't afford the energy expenditure of dealing with his indifference.

Is giving a shit really become something people have to work at?  Does giving a shit only happen when someone is going to get something out of caring?  Have people become SO self-absorbed that simple human compassion isn't even possible?

I'm kind of liking the idea of taking my life back.  I've done it before and have had great results.  My challenge this time is that I'm dealing with some kind of illness, Myositis so the specialist says, and I really don't know how to go about it all this time around.

I'm SO freaking tired at the moment.  I guess I'm done right now.  For those of you who read this, you're lucky.  I may take this one down after a few days or so.  Will have to wait and see.

Tired or not, I will be making entries in my alter egos... "All Things Ephemeral" and "Boo's Juicy Bits."  Maybe I'll see you there...

Later.

PART 1: The waiting game, and who gives a shit?

PART 1:  The waiting game.

For the last 3 years I've had to wait on doctors, and/or test results.  There's nothing about the process that surprises me anymore.  And, there's nothing that surprises me about my reaction to these processes.  This issue, for me, is that I have a problem with delayed gratification.  That being said, there are times when the waiting comes with an (UN)healthy dose of anxiety.  ALL anxiety is unhealthy, btw.  And yet it happens, all the same.

Like now.

Having been told by my doctor/specialist that have a form of Myositis (of which type is yet to be determined) has left me with a LOT of questions:  Will he say it is 100%?  If so, what type does he think I have?  What tests come next?

IF this is really what I have I'm certain it's NOT Dermatomyositis (DM).  It could be Polymyositis (PM), and is less likely to be Inclusion-Body Myositis (IBM).  No matter what I 'think' I know, I have yet to be looked in the eye and be told, definitively.  I need that.  To be told definitively.

The other part of this is the possibility of Autoimmune Hepatitis and Duodenal Ulcer.  The latter.. I totally wouldn't be surprised at, due to symptoms.  I'm already on treatment for that, even prior to having my EGD etc.  Those will be done in a little over 3 weeks.  But of all the possibilities and near probabilities, believe it or not, the Myositis one worries me the most.  For good reason.  I know if it turns out to be the case, then it would certainly explain a lot of what's going on with me.

Yes, yes.  I know I'm somewhat repeating myself here.  But unless you know what this means, what these issues (diseases/disorders) actually are and what they do, then you couldn't possibly understand why I'm caught in this loop of questions.

So I called for my lab results yesterday, in hopes they would have come back by now, and they told me it would be next week.  Okay.  I can understand that.  But the waiting STILL SUCKS just the same.

I really want to know what my CK/CPK results are.  They are often VERY telling with regards to obtaining a diagnosis of Myositis, although the best confirmation is muscle biopsy.  Even so, as labs are concerned, some people have elevated Aldolase (like me) and normal levels of CK/CPK.  I'm just sitting here wondering WHERE I fall into all of that, because I've had the Aldolase test, but not the CP/CPK.  *sigh*

And there's the Anti-JO test.  This tells the likelihood of having pulmonary involvement.  THAT is one of which I hope comes out negative, because the prognosis in the presence of a positive Anti-JO isn't very good.  At all.  But, at least this isn't always the case with people who have Myositis, so it's not that common.

There's a part of me that keeps thinking... Maybe this is all just transient.  Maybe my labs were all off for a reason OTHER than some crazy, autoimmune condition like Myositis.  Maybe this re-test of certain levels (Aldolase, AST, ALT, and Alkaline phosphate) will show that they're now NORMAL!  Maybe all the other additional tests will confirm that it's not a chronic condition, and that it was just some fluke that has since resolved itself.

Thinking and hoping.  But even if it was simply something transient, then we are back to square one with these horrible symptoms (outside of the ones that may be due to ulcer.  Ulcers can heal.)

Symptom-wise---I'm a poster child for Myositis...

Guess I'll wait till the jury returns with a verdict.  Despite the specialist, whom I will refer to now as "Dr. V.," telling me "You have Myositis," maybe there's still room for error.  Even a doctor who got his degree at Johns Hopkins can be wrong sometimes.  Right?

I hate these horrible symptoms and would very much like to get to the bottom of things, FINALLY, so we can begin treatment, and so I can move on and forward.

In the meantime...the support network is non-existent.  So how does one deal with all of this without a human being to talk to, understand, listen, or just give a shit?  I may very well discover the answer to that via experience....

On to PART 2.... "And who gives a shit?"

PART 2: Is knowing really better? GI appointment, and all things considering.

If you've not read part 1 this may be a little confusing...

So..why the two-part post?  Well, mostly to spare you guys a bit of frustration and make this whole thing easier to read.  They're going to be long, so why not break it up by focus?  Same subject, different focus.  Because... I love you guys. ;)

Assuming you've read part 1, you know where I'm coming from and how spooky all of this is.  Some health issues are scary to some but not to others, and of all the possibilities discussed with my GI dr. yesterday, Myositis/Polymyositis is one of the most frightening to me.  I'm leveling that fear, but it's not easy.  I've just not been this spooked till now.  And it's f*cking difficult, I'll tell you.

Everyone knows that we can all be our own worst enemy.  But sometimes, even when we behave like we are our own best friend... there are forces, usually people, who make it nearly impossible, who make the fight to maintain a positive attitude and outlook..a fight.  It doesn't have to be this way.  So WTF would anyone choose to make another's life more difficult than it already is.  And yes, I'm referring to those who do it WILLINGLY and with their eyes wide open.  Sometimes people can just not know what they're doing, and I can forgive that easily.  But when they KNOW, when you've shown them, told them, explained to them WHY this is the case..and they deny and continue their behavior...  I begin to withdraw in a huge way.  Self-protection, plain and simple.

I'm in that mode right now.

I'm far from perfect.  I make mistakes like anyone, and sometimes they're real doozies.  I'm human, and it's going to happen from time to time.  But I'm at least making myself aware of my behaviors.  Not so much with my other half.

I guess like anyone I've allowed myself to overlook and forgive, make excuses for and sometimes ignore the obvious in front of me when it comes to T.  A bad habit of mine, I'm afraid, but one I'm quickening overcoming.  I've actually reached a point now where I simply cannot allow it to happen to me anymore.  It's destructive to my health, my happiness, my state of mind, my spirit.  He's not a horrible person.  He's a person who can't for the life of him see much outside of his own personal space.

That's not a good thing.  He's controlling in many ways, big ways, and we've discussed this (and much more) ad nauseum.  It's done nothing to change anything.

Indifference while professing love.  Apologizing while continuing damaging behavior.  A lack of empathy and compassion.  So much more.  I can't keep going along with this.  And after my GI appt yesterday I'm even more convinced that I have to start putting my foot down about my health, my life, my needs, my...everything.  It's up to me.  No matter what.  It's up to me.

IF the diagnosis ends up being what my dr is stating he's sure of (but needs ultimate confirmation from further testing)... things could be very bad for me.  Myositis/Polymyositis is serious, scary, and can significantly diminish a person's quality of life.  Damage to muscle can be irreversible if not addressed early, and we've no idea how long I've been dealing with this.  Judging by symptoms I've had for some time now... well, let's not put the cart before the horse here.  Thing is, I need a positive, uplifting, supportive environment.  And that simply doesn't exist for me right now.  Not for a lack of trying, but for having to do damage control each and every day due to someone else's carelessness, indifference, and even out-right damaging behavior.

The climate of my life needs to change.  I need to protect myself better than I have, despite what anyone else thinks.  So much damage being done.

I'm distancing myself from T for good reason, most of my reasons are stated above, but it goes much deeper than that.  MUCH.  HE doesn't see the problem.  HE is scared to death I will leave...and he should be.  But he's killed so much of this relationship, and what's damaged will never be repaired in my eyes.   Some things are like that proverbial bell that can't be un-rung.  Period.

This isn't a case of unforgiveness or being unreasonable or unkind.  Too much time has passed with my trying to reason, etc. and I'm just done.  If he doesn't get it by now.. he won't.  And I can't allow any further damage to my health, my energy, my state of mind.

IF my doctor is right...stress, anxiety, lack of sleep due to stress and anxiety is only going to make things significantly worse.

Right now I don't have a soul to talk to about this, and that's not easy.  People who don't know me well who say "You can always talk to me" or "If you need anyone to talk to..." are really just nosy more than anything.  Self-protection stops me from discussing matters of real importance with people who are only curious.  I'd rather express it all here online to the entire world than to have a somewhat intimate conversation and divulge my feelings and what I'm going through with someone who is most likely, again, just curious.

Recent gravitation towards a not-so-pretty diagnosis with my health changes everything... absolutely everything.

...just no idea who to talk to about any of this.

PART 1: Is knowing really better? GI appointment, and all things considering.

I've decided to start here, rather than the usual pouring-forth on All Things Ephemeral (alter ego).  Doesn't matter why--just something I decided to do.  Maybe it's just the one tiny thing that makes me feel as if I have some control over things.  Probably deluding myself, to tell you the truth.

This is just part 1 of 2 with regards to yesterday, as there are two distinct components here that I REALLY need to talk about.  I figure I'd do you guys a service and break the topic up so the read isn't as overwhelming, and so it will also be easier to keep up with in case you don't want to read it all at once.

So, I finally saw the GI/liver specialist yesterday.  The visit went very well in all ways.  I've NEVER seen a doctor who genuinely showed compassion for his patients!  I was blown away..almost in tears.  Seriously, this is a rarity.  He's young, and he earned his IM degree at Johns Hopkins, then went on to California for DO school.  He holds several scholarships/honors awards and is published.

He introduced himself when he walked in, and asked 'how are you today," but not in a casual "hey how are ya?!" way, but in a genuine.. wanting-to-know-how-you-actually-feel way.  I was a little caught off guard. So he concluded his introduction with telling me his background (briefly and without wasting time), and then added... "So my new patients ask why I'm here [in AL]."  He explained that after earning his degrees he wanted to come back to AL and be near his family (Birmingham), which is about an hour and a half away from Montgomery.  How selfless!  I mean, this guy could have his pick of places to work, including Johns Hopkins, but he chose home, his family.  GREAT fortune for our area to have this guy!

I handed him my last lab report, which is FAR larger than most college research papers, and he began going through them asking me about my symptoms, etc.  He left NO stone unturned.  As he looked at my liver enzymes (ALT, AST, etc, etc.) he remarked on how significantly elevated they are, focusing immediately on my Aldolase.  He looked at all the other labs and remarked on many things, actually putting it all together in a way that no other doctor I've showed these labs to even came close to doing.  Impressed yet again... I continued to listen.

He stated, with nearly 100% absolute certainty, that one of the things I'm dealing with is myositis (sometimes called polymyositis).  But he kept going...  and here's basically where I'm at with all of this:

Doctor suspects...

Autoimmune hepatitis.
Myositis/polymyositis.
Duodenal ulcer.

My ferritin is low (he said significantly low), and added that the usual effect liver issues, etc. has on ferritin levels is that it goes UP, not down.  The fact that my ferritin is depleted makes him suspect bleeding (ulcer).  That coupled with symptoms is pointing to that.

My autoimmune markers for autoimmune hepatitis were negative, but my Dr. just shrugged and said that a good deal of people who have AI hepatitis have false-negative labs.  He then mentioned I will likely need a liver biopsy.

Myositis--he ordered another lab that wasn't previously done, one specifically for myositis.

Procedures/tests scheduled and yet to be scheduled:

EGD (endoscopy).
Colonoscopy (procedural, even though I had one last year).
The top two tests/procedures will be done in 4 weeks.

Liver Biopsy - to be scheduled.

These are suspicions, really, until proven either by conclusive test results OR process of elimination.  Either way, my Dr. is awesome, and he doesn't give up easily.

In the meantime he is addressing the vitamin D deficiency, which he professed his shock that I wasn't already being treated for that (seen two other Dr's who knew about this but didn't address it).  I take one dose of Rx vitamin D once a week for 16 weeks, at which he tells me my Vitamin D should be replenished.  I've also been given an additional medication for stomach issues (ulcer?).

The backdrop to the above is a big complication--that of relationship, happiness..or lack thereof, and a simple matter of needing peace, serenity, and place where I can heal...

THAT is another talk show. And THAT is part 2....

The art of indifference and the tuning in of self

Well, I obviously didn't make it here yesterday after my vent session on my alter ego blog (All Things Ephemeral).  But that's okay.  I had enough to do and deal with, and time just didn't allow for more postings.  It's all good.

I have to be honest, though.  I did have to go back to that blog and vent again a few minutes ago.  Purging of the bad stuff works for me.  Motivation usually follows, even if I am a little worn out by the process.  It's a bit like exercising in that you end up a bit fatigued afterwards, but you also get that second wind and feel yourself getting stronger for shaking that stuff off!

Right now I'm focusing on tuning in to myself, rather than focusing on the indifference and 'tuning out' of my other half... who won't be my other half for long if this continues.  When I decided to take one more chance on a relationship, I did so knowing full well that I need to keep my best interest in focus, to not lose sight of it as I did the last time.  I told myself, promised myself, that I wouldn't let harm come to me and that I would protect what is vital about me.  It didn't happen, and I allowed myself to fall into the trap of my own making.  I was blind, and because of that I couldn't see what I was walking straight into.

So tired right now, which is often the case after I purge or vent etc. lol  But again.. it's like exercising.  It will make me stronger as I 'work off' the excess, in this case, excess BS!

Yeah.  In all this.. there is much to do, and good experiences to have.  Even if I am having to choose to have them alone.  It's not any fun 'experiencing life' and having adventures with someone who is either indifferent or disinterested.

There is an awfully big world out there just waiting to explore, experience.

Onward...

"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 who shared it with me first.  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 this one 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.

Platitudes reveal attitudes

I pretty much spent my energy on another blog (All Things Ephemeral), but I am keeping my promise to you guys about posting in all 3 blogs.  They do have different reasons for existing, and I'm trying to remain true to that in the midst of being too damn tired to post more than once.

Just for folks to know, the alter ego blogs are related to one another, but from a different perspective.  "Boo's Juicy Bits" is pretty much a free-for-all with a foundation of health and diet, weight loss, etc.  But you get to see things completely derailed there at this time. It is what it is.  But I'm hoping that what I struggle with will help others, so... it remains.

This one.. well, this one ends up being whatever it ends up being. I created it for hope, just to express hope.  Sometimes it's lighthearted, while at others.. not so much.  Sometimes I miss the mark on the whole hope thing, but that's part of the process of working through crap.  Right?  Work through it, dismantle it, and make it... somehow... different.

Here is the place where I keep my own personal hope.  It's a place of dreams, though it doesn't always seem as such.  I come here after unloading on All Things Ephemeral, and here is where I begin to finally muddle through the confusion that venting often uncovers.  Yeah, I know 'confusion' seems counterintuitive... but... well, you know what I mean, right?  It works.  For some reason it just works. So why question it?

The house.  The one we've not moved into yet.  Still under renovations but very much moving along. I'm feeling weird about the move... excited and unsettled.  Moving can be very exciting.  When I anticipate this move I think of change, hope, and... an uncertainty as to if I'm full of crap for that.  Funny, yes, but still true.  I guess I don't know what I feel about it other than just feeling excited in a cautious way.  Maybe it's that I feel I may be expecting too much from this move, maybe expecting it to change my life SO much by moving somewhere where there is beauty and quiet... that I'm perhaps asking too much of the powers-that-be.  Stupid, huh?  Yeah.  Maybe a little.  But it is what it is.

In the midst of all of this there's the total lack of a support network while I go through all this health business.  No one really connects with me, and I'm incredibly sensitive and perceptive when it comes to that.  I know when someone is just going through the motions, friends or otherwise.  So this has been the biggest item sucking my energy away.  Save your platitudes, because they not only don't help, but they're harmful.  It's best just to say nothing at all if you're not invested in your own words.

I'm tired.  Worn out from the last blog post and this one....

There's a song I need to listen to... yes, "Need."

On with finding my life....

Incubus - Dig