"You've chosen lessons of pain"

I received a message with this video in it yesterday.  I have no idea who the person is who sent it... but, oddly.. this is one of my favorite songs and one I listen to every night.  Headphones on, dark room, and songs to obliterate the thoughts....

The Art of ASSumption & The Most Powerful Thing To Be.

I spent the last 1/2 hour or so talking on the phone to a friend of mine, who also has a blog as well, and we talked about life, health, girl stuff, and so on.  During the course of the conversation, and as the conversation settled into more meaningful, deeper topics... we both came to the realization that scrutiny is good, and ASSumption is bad.  Okay.  Sounds silly when you put it like that, but why confuse the issue with pretty words?

Somewhere between acquiring information and implementing reason something can go very, very awry, and the consequences aren't anything to write home about.  So why do people fall prey to the rather weak lure of assumption when the truth is often, though not always, fairly interesting?  G and I concluded that we definitely are in the middle of a dung-pile of thrill-seekers who can't handle being removed from the most caustic drama available.  And when it's not available... they set about constructing the facade that will most assist them in their endeavor to be shocked, appalled, thrilled, and mortified.  How crazy is that?  Well, maybe it's not crazy at all.

Humans thrive on drama.  Whether you have drama in your life or not, and it doesn't matter who's fault the drama is, people just can't seem to help themselves when said drama isn't up to par for their taste.  It takes talent, G and I agree on this, and we believe that in all seriousness people hone and perfect this skill that is not at all unlike mental heroin.  Once people try it.. they can't do without it, and when their 'stash' of drama runs low, or it's just not doing it anymore for them, they have to enhance it somehow.

Right before G and I hung up so we could, you know, blog about it (grin)... we both thought there was, in so many ways, a certain kind of power with being honest with blogging AND life.  When you realize your advantage, when it finally hits you that you're actually in a position power... the anger against having ASSumption being projected on you... that's the moment you win.

The most powerful thing to be, hands-down, is underestimated.

Now, this isn't anything new.  I've known this, as most do, my whole life.  Or at least fairly early on at some point... usually in childhood.  Even if we don't recognize it right off deep in our gut we know.  The first time someone doesn't believe us when we're telling the truth--realization sets in.  And either then, or later on in life, at some point in time... you understand fully that the moment people don't give you credit for having intelligence is the moment they relinquish their own power.. to you.

People who don't respect you try, even subconsciously, to discredit you.  This is a very strong form of underestimation of you as a person.  This means they underestimate you, therefore, can't predict what you will say, do, or think at any moment in any situation.  The mistrust they infuse doesn't move beyond themselves and, therefore... they weaken their own ability to 'keep up.'  My question in all of this is.. "Why on earth would they deliberately assume the position of weakness?"  Well, that's something only those people can answer.

I can be amused by all of this easily.  However, as G and I agreed, there's a certain element of pity that comes into play when you realize that when people choose to inject ASSumption into truth that their lives must become terribly distorted as a result.  How can anyone find anything good if the distortion becomes a barrier to actual communication?

At this moment I can visualize G blogging away frantically---excited to know she's not as powerless as she once thought.  It was a good conversation.

Off to re-post on my other blogs, then to read G's blog...

What a weird freaking day.

When I'm without my voice, music...

When I'm without my voice, music...

Fact after the fact.

Had an appointment with the Dentist re my "mild" sleep apnea.  This diagnosis, btw, was really surprising to me, because I knew I wasn't sleeping well but thought it was because I was waking up so much during the night.  Pain, etc., all played a roll in my tossing and turning at night, fighting will a stubborn pillow which refused to submit to my will, and wresting with a blanket that I once viewed as the softest, most comfy-cozy piece of fabric on earth.  I mean, microfiber is the shit, is it not?  Yet, it never occurred to me that I could have sleep apnea.  Who knew?

This diagnosis, as you guys may know from past entries here, and on my other blogs, happened a few months back, even prior to the AIH diagnosis.  However, the dentist I see who makes the oral device (CPAP is out of the question) revealed my "score" as "11."  I had no idea I even had a score, much less what that number was.  I really need a new pulmonologist.  Sheesh.

So the dentist held up my chart with "11" written with a black Sharpie and explained what was what, again, and what I should look for in changes as the device is adjusted over the next couple of weeks.  I asked him, as T did (he was there) what the number meant, and this is what he told me....

"That number is the score they gave you based on how many times you stop breathing while sleeping."

Well.  Alrighty then.

So as he further explained, it's a score based on how many times a person stops breathing during the night divided by how many hours they slept.  The score means that, on average, I stop breathing 11 times per hour.

I sat there for a moment considering this information, and I wasn't sure how to react really because it was the first time I learned of this.  No one at the sleep study center told me, and my pulmonologist didn't bother telling me at all either.  It took a minute to digest.

So I guess there's a damn good reason I'm tired all of the time--in addition to all the pain and weakness.  But wow.  11 times an hour--and that's in the MILD sleep apnea range.  Crazy.

Over time it will be interesting to see how I feel as the device is adjusted forward.  This device, btw, moves the lower jaw forward a little to open up the airway and move the tongue forward--this is based on CPR maneuvers.  Pretty cool.  But it takes a little time because if the jaw is moved forward too quickly it can cause TMJ.  I already have issues with this due to grinding my teeth when I sleep, something the dentist has told me is solely due to stress.  In fact, when I asked him what the 'cure' is, he replied... "Not being stressed."

Well, I'm shit out of luck in that department.  Oh well.  So anyway, the adjustments for me have to be done a LOT slower due to this.

On another subject, I will have a new cardiologist soon.  My first appt will be in May.

Now that I've made my arms ache typing... I'll wrap this up.  There's more to say but I'll give myself a little time in that respect...

Spent and at a loss for words.

Sounds like a clear sign I shouldn't be posting, doesn't it?  Yeah.  Probably.  But I'm here just the same.  I'm about 5 minutes into taking to my bed, putting on the earphones and trying like hell to disappear.  I never know how this will go, to be truthful.  Sometimes I fall asleep.  Sometimes the music makes me feel better.  Sometimes anxiety comes into the picture.  But physically I have no other option.  When my body gives out, it just gives out.

There's more to what's going on that AIH.  Pulmonary involvement and other signs and symptoms also point to Myositis or Sarcoidosis.  I've no idea what the answer to it all will be.  I just hope like hell those answers come soon.

I'm not going to make any sense at this point because I'm too flipping tired.

First Labs Post-Prednisone & Azathioprine

So looks like another medication is being added to the list--Lasix, a water pill.  This is needed to reduce the amount of EXCESSIVE water retention caused by the Prednisone.  I'm really glad to know about this addition, though it's going to be rough heading to the bathroom constantly.  Oh... but I'm SO very glad to do so!  You've NO idea.  But there is other news as well...

Liver enzymes: At the start my liver enzymes (which is NOT a liver function test) were elevated some 7-8 times that of normal, depending on which end of normal you do the math from.  Considered by the doctors I saw these were considered "significantly elevated."  Some people have way more elevation than that, but apparently research says that the actual numbers don't always indicate prognosis or how significant the disease is at the time of diagnosis.  But today, thankfully, I'm told that the one enzyme that is still elevated is only elevated by a little now and "Much better than where it was before." YAY!!  That's good news!

While I have to wait to get the labs actually in my hand to SEE them, I was also told that some tests came back showing mild muscle inflammation.  Not sure which test that was, but it doesn't really surprise me.  I have labs rechecked next Monday also in order to make sure the Azathioprine is helping, and not hurting things.

Good news, right!? :D  And hey, as long as those numbers go down and into the normal range, I can deal with some side effects from Azathioprine.  I mean, as we go along this journey the prednisone will be tapered... and THAT is DEFINITELY a good thing!  Not treating AIH means possible progression to cirrhosis.  Only thing statistics say about this that I don't like much is that 80% of people who go OFF medication to control AIH have a flare up within 1-2 years, and it often comes with the nasty addition of fibrosis or cirrhosis.  Yeah, I'm okay with medication inconveniences over death, thank you. ;)

So what's the deal with muscle inflammation?  I've no idea.  Guess that may be addressed next... we'll see.

How's that for some good news? :D

Recycling the old year anyway

New year, new beginnings... something people talk about when it's time for the calendar to change to the next page.  Why do people set themselves up like that?  Whatever drives you, I guess.  As for me, I've stopped prescribing to new year's resolutions and promises that I'm not 100% sure I can keep.  I mean, once you've let yourself down it's not the easiest thing getting past the ole "Dammit, I failed" self-talk.  Even if we don't say it out loud or think it consciously, it still rattles about inside for a bit.

No resolutions for me, thank you.  I'm going to do a life resolution and give myself permission to not reach that goal in any particular amount of time or in any particular fashion.

So I will now focus on simply recycling the last year into the next and giving it new purpose, a new chance.  Why not?  Why wouldn't I give myself that gift?  It costs exactly nothing and has a higher chance of actually being successful.  Think about it.  Giving yourself a do-over IS possible.

Reach for it.  If you grasp air, reach again.  Keep at it, because contrary to what some will tell you life is a damn process, not a static decision we make each day.  We're alive.  Period.  Get it?  We. Are. Alive.  It's already done for you, and all you have to do is participate.

Get it?

Ever-Wondering Why I Bother to Give a Damn

It was a long holiday weekend filled with packing, moving a few loads over to the new house, and lots of anxiety having to be around T for that long.  I'm not being mean here, I assure you, but the magnitude in which he's "just not there" is ever more apparent when we're around each other too much.  And honestly, it drags me down and wears me out beyond words.  Not sure how I can handle this much longer.

I try very hard to be patient and understanding, but it's nearly impossible to feel those things when the other person is simply not trying at all.  I'm a ghost in my own household (notice I didn't say "home"), and the weight of being absolutely trapped is taking a tremendous toll on me both physically and emotionally.  Life isn't supposed to be this hard.

He's supposed to go visit his family in Florida next month, and no.. I'm not going.  By choice.  I'm simply not up to that long drive right now, and honestly... I really need the time alone; maybe I'll be able to breathe for once.  I'm a little scared I'll like being by myself much more than I realize.  Though it really wouldn't surprise me...as I crave space, peace, breathing room, a place to stretch these broken wings and try and remember what it feels like to fly.

...It was another weekend with my pointing out all the ways he tries to control me, how he treats me like a child, how he doesn't respect me... and as always it falls on deaf ears.  Oh, he vehemently INSISTS that he understands what I'm trying to say to him, that he gets it, that he will try harder, and so on..and on..and on..and on.  His words mean very little to me anymore, and his WORD... means even less.

I can't rely on him following through.

Honestly, I could understand his not being able to follow through on some things if there were a REASON.  But there's not.  He simply just... doesn't.  And it's very telling.

In the meantime I try desperately to hold on, to remember who I am, to remember my dreams, wishes, hopes, goals, and to remind myself that my needs matter too.  I also have to work on not being completely rolled over by him when he does this; and I have to say it's nearly impossible.  I mean, let's face it---I'm not the toughest person, and I'm sensitive to both people and environment.  And my environment right now is NOT conducive to happiness, joy, OR healing; three things of which I need desperately in my life.

How the hell did I get here?  Rhetorical question, really.  What I should be asking myself is 'How did I get here AGAIN?!'

Okay, so truth be told I'd have to say I HAVE asked myself that question and know how I got here again.  I'm not in the awful places that I've been in the past with relationships, but this one isn't healthy for me at all.  So what do I do so that I can thrive, live, and be able to breathe in my own space?

That's the million dollar question, isn't it?

And I'm working on that...

I am.  I have to.

HAVE to.

Results but no answers

First off, I hope everyone had a wonderful and blessed Thanksgiving!!!  No matter what's going on in our lives and the world we still can find much to be thankful for.  :)

Okay, so the CT w/contrast results came back and, well, it shows a few unsettling details.  Not entirely frightening or anything, but a little unexpected and confusing.  Naturally, I have to wait for my follow-up in January to get answers regarding the findings on the pulmonary function test, and as well as the new CT findings...

So, I get my copy of the CT w/contrast results and am encouraged at first by the word "stable" with regards to an enlarged lymph node... 1.7cm x 1.1cm at this time... but then I realized that the word you really WANT to see in lymph node findings is "reactive."  Basically reactive means due to an inflammatory or infection situation.  Ok.  The radiologist's report said to watch and follow up with other investigations.  I'm honestly, to tell you the truth, not all that concerned with this particular finding.

Still showing mild, scattered scarring, but below are a few new findings...

"There is a small amount of new and some slightly larger left pleural nodularity at the same level posteriorly and medially and also anteriorly..."  Will say more about this in a moment...

"There are a few areas of left pleural focal thickening that are new in areas and slightly larger in other areas, including at the level of the above-mentioned LLL nodule.  These can be reassessed on a short-term follow-up CT to see if they persist."

Mostly I'm not happy about the pleural nodules, nor about the pleural thickening.  So, I guess the saga continues as to what is what and what is to be done, if anything.

Results... but no answers.  *shrugs*  I'm not going to focus on this.  Being aware is the most important thing.

Guess that's all I have to say at the moment---packing and moving things to the new house.

For now... just breathe... :)