Because I Can.

It's inevitable, isn't it?  Social networking is like trying to have a picnic beneath a buzzing hornets nest.  We know the situation is precarious, especially when so many have now succumbed to chronic butt-hurt, and yet we persevere, post to our little heart's content, and laugh at the wrath some things inspire from unstable people.  We try to understand, and some will try to edit what they post in order to 'keep down the drama.'  Thing is, the drama is on their side, not ours.  I mean, getting bent out of shape over what someone posts is a lot like being offended by the furniture in your neighbor's house... and saying so.  It's rude, and it's inappropriate.

So why do people do it if it's just going to stir up trouble?  Well, the answer to the question is in the question itself.  Some people are addicted to drama, and you can spot them readily because they'll be the ones complaining constantly, and in their passive/aggressive manner, about everyone else's "drama."  I know you guys have seen this.

I'm always a little amazed, watching them melt-down, lose control, judge others for speaking their minds, all the while trying desperately trying to blur the line between 'victim' and 'bully.'  Know the type I'm talking about?  These are the people who will call you an idiot while claiming they're above such behavior.

It's perplexing.

Here's the thing: Social networking doesn't come with a carte blanche card to attack other people's views, etc.  You have a choice to keep going if you see a post you don't like, and most stable, intelligent people will do just that.  And yes, there are exceptions, such as someone outright attacking, bullying, posting personal or sensitive information about you, etc.  I mean, by all means.. call them out on it if they do that, and be sure to block their sorry asses when you're done.  Nobody likes a bully.

Now, you also have to practice what you preach.  I choose not to comment if I don't like something, and I refrain when possible the urge to behave in passive/aggressive ways.

I personally don't believe we should censor our speech just to make other people more comfortable.  DO know that I'm NOT including bullying in this, because that will NEVER be okay.  Not ever.  But outside of bullying, we can say what we want, given it's within keeping with said SN TOS.

My personal experience in this current political climate has been that the chronically butt-hurt come out in force when I post something that isn't in keeping with their own views.  One person in particular has taken to some very nasty commenting on posts he doesn't agree with, and often it's simply posts in support of who my chosen presidential candidate is.  Now why would anyone have to vomit nastiness on a positive post?  Who knows?  Who cares?  My posts on my page aren't open to bullying and nastiness.  I will either delete your posts or block you.  Enough is enough.  For the record, I've not yet blocked this other person, but that could change quickly after today's nastiness.

When has free speech turned into 'free to bully'?  I don't have the answer to this question either, but maybe it's more a rhetorical reference than anything else.  Either way, some people really don't understand how stubborn I can be when it comes to another trying to control what I do, how I think, how I feel, and so on.  Yeah, I can assure you.. you really don't want to poke the bear like that.

Bullying doesn't work on me, and you'll find quite the opposite response than what you hope for.  But then, I think these types of drama queens actually WANT the drama, which is why they spend SO much time tossing insults.  Why else would they do it if that's the only payoff?

So today this person went on a rant, tossing in character assassination remarks and such, and quite a few at that.  But the main complaint is that he didn't want to see political posts and actually stated that if you're posting more than 2-3 per day that your friends are "Fucking sick of you."  Well, what he thinks was a clever cut down and shaming tactic I see only as a challenge, and one I accepted right off.  Today is going to be a day when the political posts will continue.. all.. day.. long.

I don't give in to bullies, who are really just cowards anyway.  My page, my posts, and anyone who doesn't like it can click the 'unfollow' or 'unfriend' button!  You can't bully me.  You can't censor me.  And you can't control me.

Challenge me, and you may be surprised at my response.  And remember, you can't un-ring that bell.

I also practice what I preach: if I see a post I don't like... I move on.  Having the restraint to NOT react is empowering, because when you do as that other person did today you show weakness, an inability to control your own emotions and behavior.  Why would anyone willingly do that?  There are venues outside of social media to air your grievances if needed.  Hell, I have blogs where I can speak my mind and get things off my chest WITHOUT drawing attention to the person I may be talking about.  Having been at the receiving end of abuse and character assassination I choose to refrain from going down that road if possible.  But I assure you, I'm NOT afraid to stand up for myself; that's a completely different thing altogether anyway.

As they say... haters gonna hate. ;p

Really?

Shakeology is an awesome product, and it tastes really really good.  It replaces a meal, or two if you can spend that much money per month (I replace ONE).  Sounds easy, and it used to be.  But what I have to deal with NOW is that the weakness I have, the weird and excruciating lower back pain (despite the prednisone, no less) actually prevents me from being able to stand and MAKE that shake!  Is this the Myositis part of my current life experience?  Is it something else?  I mean, really?

I have to wonder where this is all leading.

So what's the solution to this?  I've NO idea.  Having to lean my elbows on the counter JUST to be able to stand there at all doesn't exactly allow for making that shake every morning or afternoon.  WTH?  *sigh*

The rest of my diet has changed dramatically due to this as well, and since I can't even stand long enough to make a sandwich.  The unhealthy alternatives, you know... the ones that you can quickly nuke without any preparation, well that's become my way of eating.  Trust me, this is not a good way of eating if you're goals are good/improved health.

I've considered replacing dinner with a shake so T can at least help.  I'm not sure how that will work, but it may be the only solution to the problem at this time.

This weakness stuff is ridiculous....

*ugh*

Inevitable

What a word, huh?  Stating my case for better health is a daily routine, one in which I decide when I wake up just how far I'm going to let this AI situation screw with my life.  Oh, I make the decision all right, but the powers that be seem hell-bent on proving me wrong.  Raging against this doesn't work, yet it gives me an outlet to expel the toxic waste of bewilderment.  So be it.

Weight loss, prednisone, diet, eating, choosing, and living with the ultimate consequences provide a messy framework in which I have to live.  This machine controls everything, as many of you know, and we KNOW it controls us because of all the hype with body-image, health, well-being, and the next, best and greatest health craze, fad, or obsession.  You know it's true.  I know it's true.  All of us fall victim.

The good news is that we can choose how we go about reaching for better health.  MY choice is to abstain from meat, and dairy... go vegetarian or vegan.  As it turns out, the autoimmune hepatitis and medication necessary to bring and keep it in remission poses their own health concerns, one of them being low calcium, osteoporosis (to name just one).  I can't skip the dairy, because supplements DO NOT WORK in this case.  I eat dairy, I take supplements for calcium and vitamin D... and yet my calcium is testing below normal.  Now, this could possibly (hopefully) change as I'm weaned off the prednisone.  But only time will tell.  In the meantime, knowing calcium actually helps a person LOSE weight, I know that I'm still fighting an uphill battle.  Prednisone puts on weight NO MATTER WHAT YOU DO, lowers calcium in most cases, causes extreme water retention, lack of sleep/insomnia (which is vital to weight loss)... and so so much more.

At least I'm down another 10mg/day, so that's good news.  The Azathioprine is up to 150mg, which is supposed to help with symptoms from prednisone tapering, so there's that.  It's just a damn ugly process, is what it is, and the effects from using high dose/long term prednisone could last up to 2 years.  These realities become part of my journey to better health.

...Then there's the myositis situation.  WHAT am I to do with that?  Nothing, for now.  It's attempting to kick my ass just the same, though.

Ugh.

...I really wish T would finish putting the exercise bike together.  *sigh*

How the hell am I going to survive all this?.....

The Invisibility of Being.

Throughout my life I've been pretty thin-skinned, listening to others tell me what I should/shouldn't be, what and how I should think, do, say, dream... developed into an art form for me that damn near reached "Spidey Power" status.  No, seriously.  I would take and wear whatever anyone projected upon me like a shiny pair of Jimmy Choo's.  And trust me when I say that two-sizes too small absolutely made a difference in how I felt and carried myself through life.

Barefoot is better.  Know what happens when you go barefoot the majority of the time?  The soles of your feet get pretty damn tough.  Having grown up poor I had only one pair of shoes (cheap) at a time and wasn't really allowed to wear them outside if I were just playing in the yard, etc.  They had to last until my mom decided we could afford more.  I think I had the toughest feet of anyone I've ever known because of this.  The only thing that really hurt me was if I stepped on glass (which I did a few times, once landing me in the ER to have the glass removed), and when that California asphalt and concrete got hot enough to fry an egg on.  Even so, over time walking barefoot didn't bother me one single bit.

But what about the INSIDE?  Oh, but that was a whole different story altogether.  I couldn't walk my way through through the pain to being 'thick-skinned' and pretty much felt the weight of anything and everything that was said to me.  Criticism became truth, a 'reality' handed to me that I willingly took.  My childhood experiences weren't filled with encouragement or praise nor even helpful criticism.  Indifference and criticism, and many times complete withdrawal of love and affection were the tools used to shape the person I would become.

I was to become the child who survived.

In adulthood, that small child I once was is alive, and though not well, that part of me is AWARE.  There is still a disconnection of who 'that little girl' was and who I am now, and I still see photos of when I was little and feel such pity for 'that little girl.'  Yes, I know it's me, of course.  But the disconnection is still there just the same.  I want SO much to apologize to her and say "I'm sorry I didn't protect you!"

I've accepted this disconnection as a part of who I am, but I don't like it one single bit.  C'est la vie.

I remain thin-skinned, but my reaction to criticism, disrespect, and so forth is very different now.  I've allowed history to repeat itself in relationships I've had, and the reality of this has unprecedented tenure, so it would seem.  It will be with me the rest of my life.  Okay.  I'll just have to work around that when possible, right?

So here I am all grown up and stuff.  I can make decisions, change my mind, and walk away from anyone or anything that threatens my happiness; such are the benefits of being an adult.  Right?  Well, not exactly.  At least not for me.  That subconscious, that inner child, the child I actually WAS at one time so long ago, well.. she has a mind of her own and remembers the pain, the isolation, the indifference, the coldness, the invisibility of being... well, me.

Such memories carry over for the long-haul and map the course of life in often undesirable ways.  But it doesn't always have to be like that.  I can do more to help myself in that respect.  And I do.

On bad days, of which I have far too many these days, that inner child is the one who suffers most.  Sure, I feel the physical pain, and I feel the isolation of my situation and all it invokes (depression, anxiety, etc).  But it's what happens INSIDE that changes my world, my life.  All I can do is anesthetize myself with too much coffee, reading, and way too much television.  My physical body simply refuses to allow much more these days.  That's okay, because eventually the AIH and the 'possible' Myositis, both autoimmune, is driving the bus now, and not even my inner child can rebel against that and affect change.

Sitting here in the quiet, drinking coffee, talking about things I've not talked with a single other human being about...well, but for one therapist for a very short time, I can definitely say I recognize my life as it was, and as it still is; The invisibility of being... me.

Cross-Post Rant Ahead.. "I'm DONE"

Trust me when I say... it's taken me from approximately 7:20am to 10:37am JUST to calm down enough to write.  Waking to indifference each day is grating on my nerves and sucking the life out of my life.  I'm not in the greatest of moods at the moment, and I'm not about to pretend I am.  It's been one HELL of a morning... let's just start there, shall we?

Okay, so all of my life I've believed that the old saying "Anything worth doing is worth doing RIGHT" is a damn good foundation for anyone's life.  Half-Assing ANYTHING reveals a lot about a person.  And by 'half-assing" I mean not putting everything you have into what you're doing.  Not to say your "everything" may not be on the same level every day, but putting in 100% of what you can is all anyone can really ask.  And why not?  Why would anyone do anything less than 100%?  When you take shortcuts you leave someone else to make up the difference in distance you weren't willing to go.

NOTE:  As always, unless I'm writing something aimed at someone in particular... the word "You" is used loosely and not meant to point fingers at anyone here.

My health is bad--I've spoken of this a lot in my blogs.  Dealing with one confirmed AI disease (AIH) and going through the paces of confirming a second means.. I'm NOT in remission.  I won't BE in remission for a very long time (I'm told).  The blood work COULD very well improve, the numbers will improve and possibly quickly, but 'remission' is more than numbers.  I won't go into all of that, but suffice it to say every single day is a battle to get through.  So here I am living with someone who, by nature, does ONLY what he can get away with and not a scintilla more.  What does this mean?  It means I have to take up the slack.  I not only have to do what I need and have to do, but I have to take up the slack from what he only does PART-WAY.

Half-Assers are a HUGE pet peeve of mine!

Look, I realize there will be days, times, and situations where you may have to take a short cut or do what you can in that moment.  But I also know that there are things that HAVE to be done correctly, thoroughly.  I mean, you can only short-cut your way through things until you end up with a completely and totally chaotic mess that SOMEONE ELSE will ultimately have to deal with.  Why the hell would you do this to someone, especially someone you claim to "love"?

This morning, like so many mornings (every morning!) I found myself forcing my way through cleaning up after T.  And I mean, cleaning up as in it takes me some 45-hour JUST to pick up the slack of his half-assed whatever.  Have I spoken to him about this?  Of course I have, and 2 years ago, when it really began, I was very calm, loving, and discussed the matter with him in hopes he would see what he was doing.  I mean, he's a grown up, and I'm not his mom.  He can pick up after himself, because he's no Ward Cleaver and doesn't treat me like Joan.  The family of the 1950's and 1960's are GONE.  Marriage and relationships aren't centered around women being in servitude.

Now, women who are treated with respect, treated kindly, appreciated.. will do almost anything for their guys.  It's how we're wired.  We're wired to be caretakers, caregivers, at least most of us.  However, when taken advantage of we often will begin to back off from all those things we once did easily, eagerly, and happily.  When taken for granted... we don't see any reason to continue giving when there's only taking from the other side.

And please, don't confuse this 'give and take' with material things or money, etc.  Because those things don't bring happiness, not ever.  What I'm talking about here is doing one's part in the relationship without placing the blinders on and thinking it's really just all about the other person doing all the work.

I've been in a relationship where everything was dumped solely on my shoulders.  People who know me, who pay attention, find out quickly that I can't be bought.  You can't buy your way out of unhappiness.  You just can't.  Being poor and happy is FAR FAR superior than being well-off and miserable.  Money can't get rid of unhappiness.. I really can't stress that enough.

Doing your part, that's what it's about.  Not placing necessary pressure or expectations on the other person is what it's about.  Respecting the other person's time is what it's about.  And soooooo much more, or course.  But when it comes to half-assing your way through chores because you know the other person will take up the slack for you... that's a sure-fire way to turn that person off, long-term.  And good damn luck getting them to be turned on again.

Being taken advantage of is not good foreplay.
Being taken for granted is not good foreplay.
Doing and not doing things that make the other person's life more difficult.. is not good foreplay.
Being overtly, blatantly lazy isn't sexy.
Indifference isn't sexy.
Ignoring someone isn't sexy.
Not respecting the other person's space, time, and needs isn't sexy, nor is it good foreplay.
Being mean, hateful, abusive.. isn't sexy, and it makes for LOUSY foreplay.

You treat me like shit, I'm going to shut down.
You abuse me, mentally, verbally, or physically.. and I'm going to shut down and NOT be into you.
Take me for granted and I'll stop doing things for you.

It's taken me years to get to this point, and I've been a welcome mat for a couple of people and won't ever allow myself to do that again.  I don't need anyone THAT much.  If I'm treated badly, eventually I won't feel anything at all for you, and you're going to find out that you really just can't un-ring that bell.

You can't buy me or my love.  I'm not for sale.  If you do something you claim is out of kindness or whatever, and you use it against me later.. you've given your true motive away!  Once I SEE you, what and who you REALLY are, I won't be able to see that 'other' person ever again.  Once you blow it, you blow it.

T is lucky in that there's still about 2% hope here.  This morning was just about the final straw, but I fought and worked my way past it, and I'm telling you it was DIFFICULT!  He knew, too.  He knew the moment I pointed out to him what he'd done.  He tried to backpedal, tried to reassure himself that he'd not blown it VIA me.  But what was done was done, and the disingenuous nature of what he did wasn't lost on me at all, and it broke something inside and change, again, the way I see him and feel about him.  Being disingenuous is exactly like lying, and I'm DONE being okay with men who lie to me, either by omission or right-out.  DONE.

That 2% of me that is still open to his finding a solution and fixing the whole disingenuous thing is stretched very thin.  He's running out of time.

Honesty and respect are MORE important than love.  My last relationship taught me that, opened my eyes to the fact that without those first two things.. LOVE CAN'T EXIST!  Love CANNOT exist in the absence of honesty and respect.

Besides struggling through a VERY PAINFUL morning trying to finish half-assed attempts at whatever, I also had to deal with the tuning me out thing, the thing where he pretends to vaguely respond because he knows he didn't hear a thing I just said.  No matter... I don't repeat myself anymore.  I do let him know, however, that I get that he didn't hear me and that all the begging in the world to repeat myself isn't going to make me do so.  After a year or more of this not listening/tuning me out thing.. I've grown intolerant to it.  I've told him that, fine, if he's that disinterested in what I have to say then I'll simply 'tell someone who gives a shit.'  He doesn't like it, but it's no longer about what HE likes and doesn't like anymore.  I've taken the first step in getting MY life back, replacing the disrespect he shows towards me with my own SELF-RESPECT; something I really should've done a long, long time ago.  Better late than never, I say.

So this morning was NOT a good morning.  But I'm going to spend the remainder of my day taking care of myself, focusing on what I can do to help myself heal, and incorporating those things that will protect me from further harm from anyone, especially from the person I'm living with.  Yes, I still have to work through the damage from the past relationship, but that's already underway and will help with my current situation.

Well, that's where I am today.  It will get better, and I will keep persevering... as long as I can.

This Timeline

After yesterday's major energy crash, today I find myself contemplating the things my mind wants to do that my body won't allow.  I didn't handle yesterday well at all, and I found myself wondering how much is going to get worse before it gets better, and just how am I to ride it out from day to day when even the simplest tasks are becoming glaringly impossible.  Where is this leading, when will it get better, and why can't I see my life's timeline anymore?

So I've ventured into another realm as of yesterday, and that is changing my diet radically.  The Prednisone weight will have to be put to the side at the moment, because I'm now having to deal with changing my diet so as not to be incredibly sick... let's just put it that way.  I'm now having to construct a pretty bland diet in order to stave off the turmoil that seems to have taken over my GI tract.  Yeah, I know.. not pretty.  It is what it is.

Bland chicken and rice, bananas, white toast (HATE white bread, btw), veggies, cooked carrots, etc.. is now going to become the norm until we find out how to get that $1,200 Rx.  We're trying a different route today, one that makes the dosage a little lower (have a copay card we're hoping will work with this dosage change).  Why on earth does this even have to happen?  Ugh.  Obamacare SUCKS and has messed up SO much with insurance.  Anyway, back to the topic at hand...

The bland diet will have to do until I can get that Rx.. which I needed at least a month ago.  The waiting continues....

On another note, I still feel 'dull' today, tired, brain-tired, lethargic... all fun and games when Azathioprine dosage is tripled.  And the fun begins with taking massive precautions to not get a cold or flu or whatever.  This is.. also just the way it is.  Welcome to my 'new normal.'

But that timeline that I used to be able to see, even if a bit blurry, is just gone.  I suppose this means I'm going to be living day to day until I feel a bit more like a human being, and I will continue to take steps in the right direction when I can.l

The exercise bike is partially put together... T doesn't care to use it so it's just at the back of his mind. But when the day comes that it's FINALLY assembled... I can at least begin exercising.  Unless my doctor feels that with active Myositis this is a bad idea.  Either way, even if I can exercise even a little everyday it should only benefit me, right?  And the eating thing... bland diet or not things have to be done differently.   And this is the only way I see my life right now, just getting from one moment to the next, one day to the next, one thing to the next.

...And who the hell knows what's next?  I sure don't.

Dammit.

Autoimmune Hepatitis, Myositis, My Life

One more appointment out of the way.  One more trip to the lab to get more blood work.  More talk of a secondary AI disease (Myositis), and discussion of Paroxysmal Muscle Weakness.  All in a day's work, right?  All joking aside, it's just movement in the same direction, albeit slowly but surely.

Getting from point A to point B is mind-over-matter now.  The excruciating pain in my lower back I'm told isn't electrolyte-related and is part of the "Myositis" issue.  My Hepatologist, if I understand correctly, can't make that diagnosis definitive, as it requires a rheumatologist to do so.  This can be very difficult, however, unless one is lucky enough to find a rheumy doc who is also a D.O.  Now, I won't go into the whole 'what is a D.O.' thing here because it would just take too much time.  What I will say is that I prefer D.O.'s over the average M.D. because their D.O. training means they're trained and take the stance of... looking at the whole person, rather than the parts.  In other words, they look at the big picture.  My GP is a D.O., and every specialist I have to deal with I tried to choose based on whether he/she is a D.O. (such as my cardiologist).

Mind over matter, literally...

I have to WILL myself through every step I take now.  The muscles in my lower back literally LOCK into place the second I stand, preventing walking in a normal way... or sometimes walking at all.  In other words USING those muscles is almost out of the question.  The leg weakness, the arm weakness, I'm told, is also due to the AIH and most likely even more to the myositis.  Myositis is not something anyone wants, trust me, and I'm not sure where it will end.

Geting a definitiv diagnosis isn't really going to be so easy.  AI diseases are complex, and many of them have to be, in part, a diagnosis of exclusion, though not always.  Many autoimmune antibodies aren't found to be present in about 20%-25% of people with AI disease, and the other factors are sometimes hard to catch.  When someone spontaneously goes into remission... that makes it more difficult.  With aldolase levels elevated again, with the problems with the muscles in my back, etc... it could be easier to get a diagnosis.  Not sure.

Eventually, the Aldolase levels could normalize and stay there, though myositis could be rampant.  The reason for this is that Aldolase will decrease as muscle tissue is destroyed, so it's not the most reliable predictor for severity or even presence of the disease.  Where I'm lucky in this is that I'm being treated for Autoimmune Hepatitis, which includes Imuran/Azathioprine... which is used to treat myositis as well.

"You're Aldolase is elevated AGAIN.  And THAT'S while you're on prednisone and Imuran!  Imagine what it would be if you weren't."

He's right, of course.  The Aldolase levels are elevated but still somewhat lower than before treatment.  Maybe we can stop the destruction of muscle before it gets too bad.

So what am I to make of this?  Don't know.  Just waiting for the definitive diagnoses so focus can be shifted solely on getting these things in remission.

Prednisone tapered another 5mg, Imuran from 50mg/day to 150mg/day.

This is where things get risky.  I can't get a cold and need to avoid situations where infection can happen.  With my immune system suppressed to this degree, even a cold can land me in the hospital.  So precautions must be taken, and I have to pick and choose where and when or if I go in public and take precautions accordingly.  I have to stay clear of sick people at all costs.

I can't do a flu shot until I'm off the prednisone, so that will complicate things further.  I SHOULD have gotten a flu shot weeks ago, but I had no idea I would need one that badly.  Lesson learned.

Bottom line today is that I'm forcing myself to sit here at the table, to type, to keep on keeping on without succumbing to the call of the couch.  Yeah, I would like nothing better than to completely veg out on the sofa... or crawl into bed for a long nap.  I have no idea what I'm to give in to.

My next bout of research, though I've done a little preliminary, is to see what I can and cannot do with regards to exercise given that I'm most likely dealing with myositis.  The commercial grade (gym quality) exercise bike arrived yesterday and isn't put all the way together just yet.  No biggie... it will get done, and I need some time to figure stuff out.

OMG... I'm so tired, my muscles ache.  But I think this may be due to the increase in Azathioprine.  Boy... am I in for a rough ride, I think.

Signing off.... for now.....