Risk for Redemption.

I played a bit with the idea of composing an audio/vid for myself, just something to remind me that there was, in fact, a time when I felt like a normal human being, when pain was minimal and sometimes absent, when I could behave normally, when restrictions of body (and now spirit and emotion) hadn't taken hold.  I know I used to feel better and actually participate in L I F E.  But for the life of me, my mind edits at will and separates the now from the then, the me I became and the me I once was.  So to keep it all in perspective... I made an audio movie with pics ranging from 8 months ago to 4 years ago, before this big crash in everything that is 'my life' and 'me.'

I was hesitant to upload it here (still am), but a friend of mine said "Do it.  Put it ALL out there, and to hell with what anyone thinks!"  It feels odd to see my own face all over this video, but... it's mostly for me anyway, something I can look at and recall that L I F E was there in me, and maybe.. just maybe... I will start believing again.  enough of the typing... arm aches horribly.

The compilation set as a reminder of where I once was in my L I F E and H E A L T H, remembering a healthier, happier me... taking a risk for redemption of myself, an apology to tell the woman I've become.... 'I'm so sorry I let you down."

Anger? Surprise? Inspiration at its worst? WTH?

REPOST from my other blog(s):

Sometimes I get a spark of something that inspires me.  Such inspiration doesn't always present itself in the best way, though, but I usually try to go with it when it happens.  Such gems shouldn't be taken for granted but taken advantage of.  It really is that rare.

In the midst of fighting for every drop of energy that can be found wherever it is I can find it, a tiny burst will make its way into the day and nudge me.  Okay, I can certainly deal with that.  Wish there were MORE of it, but I'll take what I can get and go with it nonetheless.

The fuel for this little 'fire' isn't from a good source, definitely not a positive force, and most definitely not from a pleasant source.  Be that as it may, there it is... kind of like when your dog has an accident and you're left looking at it wondering to yourself what you did to deserve such a... 'gift'? lol  Okay, okay... enough with lame attempts at comedy.  Even so, the conversation with a friend of mine earlier today was what ignited this whatever-it-is and sent me on a journey to try and put my thoughts in order.  I found the results of that rather.. lacking.

All this blabbering, to be honest, is just my working through it all.  Not the conversation, because that was interesting and creatively invigorating.  But the chaos I'm dealing within the thought process at the moment is simply trying to pull together the shards of data that's left from past experience.  Anyone who understands this knows where I'm coming from.  G knows.  She gets it.  And, from what I read on her blog(s)... she's been able to run with it without tripping like a clown every step of the way that I've been.  Eh.  I'm still confident that this purging will eliminate the chaff and reveal the good stuff.  I'll be back to discuss that when it happens.

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.

The last several days have been fraught with a fatigue and weakness unlike anything I've ever known.  Basically, for the last several days I've been pretty much bedridden, only able to sit up for a VERY short period of time.  Painful, tired, and weak, I spent what little time I was awake researching if there was a medication I was taking that could be doing this.  What I found was across the board complaints about every drug I'm on.  Narrowing things down to a time frame when I began getting worse I found that cessation of Prednisone and AZA kicking in were likely the culprits.  Here is where things get tricky...

Prednisone and immunosuppressants are the go-to protocols for nearly all autoimmune diseases.  At the highest dosage of 40mg/day I felt amazingly well, energetic, and somewhat strong again.  It was about as close to 'normal' I've felt in years.  With the first taper I began to feel badly again, but eventually had to come off with a slower taper which ended about a week ago.  AZA (Imuran) was added along the way and is something one is kept on long-term to stave off flares of the disease, in my case autoimmune hepatitis -- don't confuse this with visual hepatitis (hep C for example).  This is an autoimmune situation in which my immune system thinks my liver is a foreign body that needs, well, killed off.  Overlapping AI disease is also suspected here, but symptoms cross over and overlap to the point where it's difficult to tell what else is going on.  Myositis or Sarcoidosis are suspects here given my aldolase was highly elevated more than once, even on the medications.  It is within normal range since taking the imuran in higher doses.

FAST FORWARD...

I don't know which is causing this horrid weakness and fatigue, and other symptoms as well, so I opted to call the doctor to TELL him I'm stopping the AZA for a time to see if that's the culprit.  His response was agreement, BUT he wanted me to restart the Prednisone at 60mg per day!  I told the nurse on the phone, who relayed the message to me, that I wasn't going back on prednisone because the side effects were intolerable and it causes so much weight gain, which I've just now begun to lose.  I'm not going back.  She said she would relay the message to the Dr.  I have an appt with him next week and know I'm going to have to give push-back because I'm UNWILLING to take prednisone again.

I've just stopped the AZA yesterday and am not doing well as I'm still weak, fatigued, and wanting to sleep most of the day.  I have a feeling some of this will improve as the AZA leaves my body.

I know the risks.  I know and accept that I could have a big flare of AIH and my liver could be damaged because of it.  But here's the thing: I have to wage longevity with quality of life, and in doing so have come to the conclusion that I simply can't have both.  I'm choosing quality over quantity.

And hey, for all I know it could take a couple of years before I have a flare again.  But as for any other AI disease going on, be it Myositis or Sarcoidosis, no one has given another diagnosis as of yet so there's little reason for me to worry about those possibilities.  Having been on the treatment protocol for those, because it's the same as AIH, it's going to be tough trying to diagnose either due to my taking prednisone and AZA for this long.  Even so, all I can do is see how it goes moving forward.

I'm actually quite surprised that I can event type, because the last several days I've barely been able to hold up my iPhone while laying in bed due to the weakness.  You've no idea how bad the weakness is.

Another thing I have to deal with, which I'm not sure is a bad thing, is the loss of appetite.  I mean, I've gone back to FEELING that I need to eat, where my body gives physical signals that I may need nutrition but don't have actual HUNGER.  Also, this is the third day where it's not just a lack of hunger but also very early satiety.  I've been taking in less than 1,000 calories a day, which I will pay for dearly if I'm not careful, especially if I'm dealing with Myositis.  But that's another talk show.

So for now just know I have to play it by ear and see how I feel, because I may not be able to post here every day---though I do hope I can because that means I'm either feeling better or one tough chick for posting when I feel like I'm going to fall off the chair any moment. ;p  C'mon.. that was funny.  See?  My sense of humor shows up every now and then.

How am I managing through all of this?.... well, I have to admit that's a whole other talk show....

The Truth.

The world has gone mad.  Or more specifically, America has gone mad.  In all my life I've never seen such division, such bitter hatred on the left, such utter madness.  And it is madness.  I don't watch the news anymore because it's simply the most depressing thing ever, honestly.  We all know the media lies, stretches truth, etc., but recently trusting anything put out by the media is just buying into fiction.  And to that I say--open a book and read, because there's more truth in a Stephen King novel than there is on CNN, MSNBC, FOX, etc.  If you're going to waste time, might as well have fun, and there's nothing fun about what's going on in the media.  And worse, are those buying into the garbage.

Whatever happened to the truth?  What's happened to people that they're SO willing to except, embrace, and repeat lies that have been repeatedly debunked?  Rhetorical question, because we all know that people will ultimately believe what they want to believe and there's nothing anyone can do to change that.  Once sucked into the gaping black abyss of a lie--it takes a tremendous effort to find your way out.

As for me, I choose not to buy into the garbage.

But I'm sad to see how much hatred there is in our country, hatred born of the dirty side of government, of politics, and of greed.

I'm not sure at this point that any one thing or person or event could turn it around.  People are to blame for their own thoughts and actions.  They make the choices, and no one is twisting their arm.

It's just so tiresome.

We don't have to agree with one another to be civil.  We don't have to think alike or look alike to be civil.  We don't even have to like each other in order to respect one another.  All social graces, all levels or morality and decorum can be maintained under almost all circumstances if we make the choice to rise above it all and do the right thing.

I have no idea what the outcome of this election will be, nor do I even pretend to think that we're all going to end up changed by the end of it all.  We're already changed.  All we can do now is dig our heels in and hold our ground despite the odds.  I'm ready to do that, and I know a lot of others are as well.

We'll take things day by day like anyone else, but none of us are willing to be bullied by the 'powers that be' or radical domestic terrorist groups.

They can try like hell to stop us.  But here's the deal: We're not going anywhere.

Deal with it.