Autoimmune Hepatitis

It's been a BUSY week.  Finally moved into the new house, and still struggling to get everything in its place, organized, etc.  I'm worn to the bone, I have to admit.  Well, maybe a few miles past that, I believe.  Yeah, there's a reason for that.

So the liver biopsy results came back and I had to have a follow up to discuss them.  I already knew there were elevated portal pressures, but that's about it.  As it turns out, I have Autoimmune Hepatitis, a very rare AI disease.  It's a life-long disease, but it can be managed in most people.

First on board is the high doses of Prednisone (not one of my favorite drugs, I assure you), but it seems to be changing things quite a bit.  I'm NOWHERE near anything remotely NORMAL, but I can certainly tell the difference already.  I went from barely able to stand long enough to make something FAST to eat... to WAY overdoing things here at the house.  What's the comparison? We're talking a few minutes PRE-Pred to 8-9 hours POST-Pred!  Trust me, this is HUGE!

Symptoms: Dear God there are so many:

Crushing fatigue
Right upper-quadrant pain
Fluid in abdomen
Weakness
Insomnia
Appetite loss
Weight--up and down, but mostly up
Joint pain--SEVERE
Arthritic-like pain, swelling, and inflammation--SEVERE at times
Muscle pain--SEVERE at times
Back pain--SEVERE most of the time
GI upset--Don't even get me started on that one
Peripheral Neuropathy
Itchy skin
Can't think clearly
...and more.

What causes it?  They're not entirely sure, just like most AI diseases.  Nothing I could have done in my life would have prevented this.

Risks:

Development of fibrosis, cirrhosis, and liver failure requiring transplant.  IF managed properly, progression to those unhappy outcomes can be slowed.  Other risks can be anything from Osteoporosis to inability to clot blood properly, leading to possible internal bleeding.

This particular disease can cause issues with the lungs as well, which MAY explain the unexplainable damage to my lungs.  Maybe it will be connected and not some other insidious thing I have to deal with as well.

The above isn't all the risks, but it's the most common.

Treatment:

First line of treatment is Prednisone, with or without the addition of an immunosuppressant.  In my case, my hepatologist has decided to begin with Pred.  If this course of treatment brings it into remission, then maybe the second drug won't have to be added.  However, if the disease flares again, that's when the immunosuppressants are added.

Prognosis:

This question isn't as easy to answer, because everyone is different and far too many variables go into assessing prognosis.  Some factors involved include abstaining from drinking, or not drinking more than the maximum the Hepatologist says is allowed, not taking OTC or Rx pain medications that can stress the liver: Acetaminophen and NSAIDS are the main two to avoid.  Having a healthy diet (which is often tailored to the situation, so I've *read*).  You basically need to take good care of yourself and avoid anything that can stress or harm the liver.

Life expectancy depends on the above, and a small dose of luck.  Some people can keep their AIH in remission for quite some time, others may be resistant to the medications they take to control and/or bring the disease into remission.

Remission:

Remission is the goal, as there is no cure at this time.  I'm not sure why I stand at this point because I've only just learned I have this and already have elevated portal pressures, aka Portal Hypertension.

So, here I am, still trying to wrap my mind around the idea that I have this.

The journey begins.

Because the Discussion Changes

It's not in one place.  If you're new here, this is what you need to know about my blogs.  The problem with putting all thoughts into one place is that looking for relevant information becomes a treasure hunt of sorts where you only find the dragon in the end, rather than the gold. Okay, so I'm not saying what I have to say from one day or one moment to the next is 'gold,' but my sense of humor is working overtime today... just bear with me on that, okay? ;)

This Free Spirit is one such place, the newest in the corridors here.  It's kind of my safe place, in a way, though visiting the ghosts of the past is often the case.  "Abuse Bonds Broken" is, for me, a way to help myself, and to help others, who've dealt with malignant narcissists.  It's really not always about the worst of the situation, nor is it always just about purging the demons.  My goal there is to help, but to also bring healing for myself in the process.  And process, I do.. more times than not, this is exactly what I'm doing there.

The stories and such aren't often pretty.  But life with a narcissist and emotional abuser rarely is, right?  In essence--you're not going to find unicorns there.

Where Fireflies Dream is a place where the sun is SUPPOSED to shine a little brighter, where life is a little lighter, fuller....  But let's face it; as life smacks me up-side the head on occasion, the lines between the great and not-so-great begin to blur.  In essence--you won't often find unicorns here either.  But I'm trying...

All Things Ephemeral .... because the discussion changes.  This was the original blog, the one where most of the laughter, contemplation, silliness, passion, and tears were cast upon the pages.  It was overwhelming at first, really, because there were NO lines drawn between anything; it began as a place to purge anything and everything.  This also used to result in many posts being deleted.  Yes, I still do that on occasion, delete posts, but very rarely now.

Boo's Juicy Bits  Well, now THIS one has gone absolutely rogue, I have to admit.  It began when I started juicing, then evolved as I embarked on a healthier diet, then went completely rogue because of the health issues that have come on board.  This blog... let's just say ANYTHING could end up here.

Why?  Because the discussion changes!  And because we live in a world that has become increasingly indifferent, where people can't 'concern' themselves with the emotions, experiences, etc. of another human being.  This is not accusatory, by the way.  It's simply a sad fact.

While not everyone is safely wading in that comfortable pool of ones own life, some are simply unable to step out... be vulnerable.  No matter.  These blogs... are just me stepping out of that comfortable place.

Talking Out of Turn

Let's just take a moment and think about what makes us who we are, all of the intricate cracks, splinters, pieces of who we were, barely recognizable, all just a scattered mess unless we take time, real time, to put it all together again.  And it's never ever nice and neat or like it was before, is it?  No, we mostly just end up a glorious and colorful mosaic of experiences and dreams all glued together haphazardly by a frantic and shaking hand.  The end result is still beautiful, and yet still leaving beauty to the eye of the beholder.

Regret can't be a part of this process if you want to come out on the other side a victor of your own war.  And yes, it's definitely war.  Some of you know what I'm talking about here.  It's a lot like walking into the light after extreme darkness.. only to find out you've just stepped out of the place that offered little risk.

As this ever-evolving work of art that all of us are shifts, we make adjustments in order to re-fit and replace ourselves within the environment we're most used to.  Change does that, you know, makes it so there's just enough discomfort to force us to wiggle a bit inside the cocoon.  And good for you if you DO change, because I'm telling you that if you don't... you'll live in that discomfort until you do.  There simply aren't any other choices.

"I am still the same!"  Pretty much, this is the truth, yes.  I'm still the same person I've been my whole life, it's just all the pieces that make me who I am are rearranged a little differently now.  In essence, this means I'm still the same but having to learn how to fit into my environment again; and this never stops.  Go with it, learn, be malleable to life's shifting scenery.  It's what needs doing.

I'm doing just that.  Why?  (see above).

The shifting scenery of late has been more like an earthquake; the pieces are still falling.  What do I do?  How do I adapt?  Hell if I know.  I just have to adapt.

No one asks 'where' I am in my life, what I want to do, where I'm going, where I want to be or how I'll get there.  No one asks.  And if I offer, unsolicited, I find myself basically talking out of turn, because the story is always about someone else.  Mostly, I'm okay with that.

If I don't speak, don't talk about this, I'm really just standing in a wasteland of a static environment that holds no actual future for me, not to mention I'm basically waiting for the debris to fall and crush me right where I stand.

Fuck that.

.....Does this many ANY sense to ANYONE at all?

Or am I still talking out of turn?

"It's always me, always me..."

A Comfortable Position

Realistic; it's the new optimistic.  I can't change the facts, but I can change what I accept, what I don't accept, and how I deal with said facts...

Now, we've all heard the phrase.. "I can't change anyone else, but I CAN change ME."  And yes, that's true. But what this phrase doesn't address is how OTHERS can also change us!  In fact, it's the words and behaviors of others that do the most damage, or the most good, and it's often done with little effort on your part as a 'receiver' because while you may be ignoring, making excuses for, or actively doing whatever it takes to protect yourself... those words and behaviors touch your subconscious.  And this often happens in the most insidious of ways.  If you're dealing with someone who is NOT concerned about your best interest, OR you're dealing with a narcissist, then you're going to be in BIG trouble, my friend.  VERY big trouble.

Will I ever really heal?

I can't give an exact timeline, if there actually IS one, but I can keep moving can't I?  Can't I just keep moving like what's wounded is more like a muscle than my entire soul?  Won't this make it better in time, all this moving, shifting, changing?  While I can't answer the questions myself, the fact that I'm asking them means I'm still heading towards healing.  At least that's the way "I" see it.

Does this moving involve pushing down what I know is damage done, or does it mean I simply find a way to navigate around it through the course of my everyday life?  Now this is something I may or may not be able to figure out over time, but my thinking at the moment is that, at least for now, moving definitely means navigating around the damage I know is there, what is hurting.  All this shifting about to find a comfortable 'position' within myself only works for a short time, not much unlike when you've been sitting too long.  It does help for a little while.

Why not sugar-coat what is, put on the rose-colored glasses, numb the pain, the truth... just numb it all?  Because that's just one more tiresome temporary solution.  What I need is a final, definitive cure to the deep wounds within.  Isn't that what anyone wants when they come out of a dark situation?  Of course.  Why not?  We can long for, desire, and obtain (eventually) that which we deserve---freedom from pain and a gain of our self, whole, and undamaged as possible.

The side effects of being with a narcissist are far-reaching, undeniable, and long lasting.  Even out of the relationship they plague everything, poison the good, and pinch the wounds that refuse to heal.  They linger in the very air we breathe at times, even when we're not aware of it.  At least that's how it is with me.  Then suddenly they come crashing through again, ultimately pushing me back to square one for a time.  It's always there.  We don't forget.  "I" don't forget.  I can't forget.  The scars are a part of me now.

I still deal with it because I have to.  Or rather... I don't really DEAL with those side effects; it's more like I ENDURE them.  I mean, isn't that what most of us do until we, well, don't?

When Bitchy Doesn't Make You a Bitch

So I had a little time to write about "My Inner Child is a Bitch" on Where Fireflies Dream (link on the side bar).  In some ways I'm trying to hang on to the humorous side of things in an attempt to thwart being knocked on my ass by life, my health issues, and this damned chronic pain and fatigue (etc).

As you know, we've pretty much become the most butthurt and offended society in the damn world.  People are losing their sense of humor trying to be as politically correct as possible, and the end result is that their egos inflate to a point where, I swear, their heads are going to explode!  WTH is up with that anyway?  Doesn't matter, because "I" refuse to go there.  I'm keeping my crazy sense of humor, thank you very much. ;)

Whatever happened to people not taking themselves so seriously, anyway?  I know, I know.  It's the trend now, the "in thing" to be not just overly politically-correct, but also to be OVERLY-FREAKING-SENSITIVE.  Walking on eggshells is now what we have to do in order to NOT offend someone.  Again, there is no freaking way I'm going to edit what I think or feel or say or do based on anything OTHER than morals and ethics.  I will never base my behavior, etc. on what's politically-correct at the time.  Nope. No way, Jose.

Somehow, some way, I do hope people's butthurt heals. Hell, have the butthurt removed, because it's a cancer.  Or, put an emotional bandaid on it and pull up your big girl/big boy undies and get on with life already!

No---we should NOT EVER subscribe to being insensitive or deliberately hurting another's feelings.  And if that happens, apologize.  But be who you are!  Laugh at yourself sometimes!

Here's a thought:  Buy a clown nose, and when you find yourself completely pissed off.. put it on and take a few selfies.  You don't think that will work???  Try it!  Seriously! ;)  I think you'll be pleasantly surprised.

Lexy Panterra representing... yeah, white girls CAN twerk! ;p

So, I get SOOOO many videos posted by friends on FB, and there's a few comments now and then about white girls not being able to twerk.  So what I've been doing lately is replying to those posts with this... Sorry, but no one can do it like Lexy Panterra! Impressive!  (yeah, you guys are going to like this).