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....