Where do they dream?

I guess in a too-short life dreams become more of a necessity than an option.  Guarantees of tomorrow, or even an hour from now, simply don't exist.  NO ONE has been given a guarantee that they won't wink out in the next instant.  Kind of a 'duh' statement, isn't it?  I mean, we know this, but yet... we don't know this.  With every decision we make we prove to the world at large how we still feel immortal, and yet it's a whole lot like walking the edge of the cliff.. at night.. with sunglasses on. Which little misstep or prophecy of nature will send us over the edge when we least expect it?

Yes.  It's lunacy to focus on mortality.  But it's genius to be aware and not take things for granted.  What's YOUR life IQ?

If I had a dollar for every time I heard someone say 'Don't take life for granted,' I'd be a very wealthy woman right now.  Saying it is easy.  Putting it into practice is an entirely different thing.  So how do I put it in practice?  Crazy as it sounds, I don't hoard life.  THAT'S how I put it into practice.

Hoarding life.  How does one actually do this?  Well, while it's wise to save for the future, plan for the future and all it could hold, we have to remember that the key here is the word "Could."  Again, no guarantee means we also have to live NOW, not to take experiences or people for granted.  Live NOW....

Take that long-put-off vacation.
ACT on the things you wanted to get done and haven't.
STOP procrastinating on the important stuff.
RECOGNIZE the importance of being in the moment every single day without fail.
Buy that album.
Go to that concert.
Have that special meal.
Eat a dessert once in a while.
Savor the moments you love.
LOVE.
RESPECT.
APPRECIATE.
And for God's sake LET GO of the people and things in your life that cause chronic anxiety, unhappiness, and feelings of depression.

That is so not the full list.  But it's the basic idea behind everything, really.

In a world based on uncertainty I hear people talk about what they're going to do when they retire.  And I have to wonder.. did YOU get a memo saying you'll actually reach retirement age?  Nooooo.. I'm not saying blow your life savings, because that would be utterly stupid.  But what I'm saying is.. do those things, as many as you can NOW, because even if you reach retirement age you may not be healthy enough to do those things.

This is what I want.  I want to live now, not later.  One thing finding out I have a chronic, life-long, incurable illness is this: If I don't follow my dreams and indulge my heart now.. I may not get a chance later.

Well then... I've had a lot of coffee this morning, haven't I?

Fun Stuff & the Continued Muddle of Health

So, on a high note today.. I got an Apple Watch.  Pretty cool little gadget, and I really needed a watch.  Made perfect sense.  Came in a HUGE box, so (like my iPhone 6 Plus) I've dubbed it my "WatchASaurus."  Opted for the rose metal sport watch with the gray band and really like it.  Chose the larger face to make things easier to work with.  I'm happy with my choice, even if I did get startled terribly when it finished syncing and vibrated on my wrist. lol  Small price to pay, right?

I guess the next step is to make sure I have the Apple Watch app on my iPhone... apparently that's needed.  So that's the good stuff so far today.

The rest of my day--pretty mundane, and I believe it's due to the drop in prednisone.  See, I told you this stuff shouldn't be used for just any ole inflammation problem.  The sides (side effects) are terrible, but if it gets the job done then so be it.  Todays lovely side-effect addition: Depression.  Seriously.  WTF...

It basically just comes down to dancing with the devil and hoping you don't trip.  Prednisone and Eliquis (blood thinner) is a bad combo, but one that can't be avoided.  It's just all part of the package, and I have to learn to be watchful and careful while on Pred.

Strictly speaking, I know some of what I'm up against.  What I dislike at the moment is dealing with it alone, because I'm seriously confused and remaining a bit in denial in some ways.  Without anyone to really talk to about it, I'm just floundering about trying to find my way.

Really wish T would just step out of the way, because he isn't going to get his shit together anytime soon, or at all.  I've gotten mostly past the point of caring, though.  If I'm on my own, he's on his own as well.  He doesn't LIKE that idea, but it's true nonetheless.  It's time, still time, absolutely time for me to take care of myself, put myself first.. for the very first time in my life.

This little chick CRACKS me up! Love her attitude...

The Last Of The Mohicans by Alexandro Querevalú

Changing the Dialogue to "Yes. It's okay to take care of ME."

I don't feel like writing another entry.  My body hurts, and putting AIH into remission is going to be a bitch.  But I have to allow myself that time, you know, to heal, to mend, to just be okay about how this needs to evolve.  It isn't comfortable saying I'm going to take care of myself.  I've spent my life as a mom, so caretaker is really the only title I ever knew.  As a child, my emotionally absent mom who preferred psychological torture and punishment, made it so even then I knew deep down that all I had was me.  Somehow, I made it.  Somehow that child survived.  And somehow.. I will continue to do so.

I'm fighting like hell not to lay down, to give in to the discomfort and pain, fatigue and sluggishness that began returning with the first taper-down of prednisone.  I'm fighting that, because if I don't... it will win.  And I can't have that.  So what I'm doing now is continuing to reassess where I am and planning a strategy that I know will help me.  Some of this I can do on my own, and some of this I will need help to keep that forward momentum.  T would be instrumental in that IF he were plugged in, here in the present, and not mired in doing the bare minimum required in life overall just to get by.  How can someone that unmotivated be so successful financially?  Don't know.  What I do know is that I'm mostly on my own, and that means all focus for healing must be spent aimed in the right direction.

Remission is the goal.  Feeling GOOD, even GREAT is the goal.  Being happy, healthy, inspired and excited about my life... THAT is a goal.  MY goals.  No matter if I have the actual stamina at the moment to make it all happen at once, but I can't give up.  What energy I have will now be directed solely at taking care of me.  I have to.  My survival depends on it.

I know what I need.  I've always known what I need.  There have been a couple of people in my life who decided THEY were experts on what I need.  And they were and ARE completely WRONG.  I knew this then, and I know this now.  My approach now is to listen to myself, because no one is an expert on me.. except me.

T has no idea what I need.  He's not horrible, mean, nor hateful (well, except on a couple of occasions when he chose to be an asshole and regretted it).  He is, in some ways, worse than 'mean.'  To me, indifference towards another person, not SEEING them, HEARING them, and unplugging because you're lazy is far worse in many ways.  But I'm not going to focus overly on that, because my point here is that he is of no help.  I have ME.

I've had to say it out loud, my truth.  I've had to say the words that make it real so I can take every measure to improve my chances and LIVE.

I have an autoimmune disease.  The one I have attacks my liver, specifically, but wreaks havoc throughout my entire body, leaving much damage in its wake.  I have Autoimmune Hepatitis, and I will have this disease for the rest of my life.  I don't have all  of the answers.  I don't know my specific odds just yet.  It's too soon with treatment for me to know anything but what I feel and experience daily as I strive for remission.

How long will remission last? Unknown.

The odds are great that most with AIH will relapse within 12-24 months, and with a second (or multiple) relapses prognosis becomes more grim.  I know with a second relapse I will be placed on an immunosuppressant, and most likely for life.

The drug that helps me hurts me.  But it's a necessary evil, because the alternative is early mortality if this isn't treated quickly and appropriately.  This is an aggressive disease that requires aggressive treatment in most cases.

There is a chance, a good chance, that I will never ever feel 100% like myself again.  There will be good days and bad days, and I won't be able to predict which days will be which.

This disease can and often does cause secondary problems, such as pulmonary.  I have to accept the fact that this has already occurred.

I have portal hypertension, and though it's mild at this time, it points to the presence of liver damage. I will believe, until told otherwise, that this damage is mild.

I wasn't told I have fibrosis or cirrhosis.  I will accept that as confirmation that I don't have those problems.  Yes, I know that this 'don't ask' policy I've taken on is a little silly.  But I'm sure my doctor would've told me it were the case if I had either.

This inner dialogue is what I live with now.  My constant mantra as I taper down the prednisone has returned to: "I can do this!  I can do this!" as I go about my usual daily routines and chores.  I talk myself through everything.

I miss that first week on Prednisone, when I felt the pain subside, my energy return, and my thinking clear.  I don't know if that feeling of returning good health is something that will return.  I don't know much of anything at the moment.

I understand that what little information that is out there for this disease simply isn't enough to help me understand what's happening to me.  I'm confused and need answers.  But there simply isn't enough out there for me to glean any real understanding of this situation that has radically changed my life.

I'm told I have the "Type 2" variety, that mostly effects young women... but can happen to older women too.  Type 1 is rare enough, but Type 2 is even more rare, and often with a poorer prognosis as those patients, patients like me, often don't respond well to treatment protocols, have partial success, or quick and multiple relapses causing further liver damage.

I know diet doesn't help, it doesn't heal, it has no effect except in the case of salt intake and cirrhosis. I don't have cirrhosis, so I'm not sure how much salt will effect me if at all.  I can't turn to diet to fix this.  Nothing will fix this.  Treatment is management of the disease, as there is no cure.

I understand that NOT treating this disease brings early mortality, so I'm planning on sticking with the protocol, even if it does bring on board unpleasant side effects.  Weight gain, etc with Pred is a given.  Been there, done that, and one struggles terribly after coming off to take this corticosteroid weight gain off.  But.. I suppose choosing life and some weight gain at first is better than death.

So be it.

The dialogue in my life has changed.  My inner dialogue has changed with the circumstances, and I have to learn how to deal with T's insensitivity where I'm concerned.

...which is another entry for another time.

The Love/Hate Relationship with Prednisone

Look, without a sense of humor, a life-long/chronic illness can steal your joy. ;)

Christmas is done, and the move into the new house is 99.99% complete.  Just a few items remaining at the old house at the moment, mostly due to the need to make room here so one doesn't feel hemmed-in.  While the move itself wasn't 'that' bad, it became a little easier when I began the first week of Prednisone--a drug I'd had to use in the past for something else and learned to both loathe and love equally.  This particular drug honestly needs to be held in reserve for the most extreme of circumstances.  The side effects of using and withdrawal are usually brutal.

How quickly those first couple of days became something to remember-but in a very good way.  My energy changed within 2 days, and nearly all of my symptoms ceased.  But the timing of this drug is tricky as one begins on high doses, then tapering to lower until remission (in my case) is obtained and held.  For the record, remission can take from 12 months to 2 years, depending on many factors.

So there I was in absolute heaven, though not feeling 100% it was SO drastically different (how I felt) that it instilled such hope and anticipation as to how much better I just knew I'd feel by the time this month of high-to-low dosing would take me.  Well, things changed quickly just a few days ago as I tapered down that first 10mg.  Dammit.

40 to 30, 30 to 20, 20-10, then 5mg for another month before the follow-up appointment.  That is, until within about 2 days of that 10mg taper I can crashing down HARD.  Phone call to the doctor and he moved my followup appointment from March 28th to January 25th, and he said to go back up to 35mg/day for a couple of days then to the 30mg.  So far, it's not taken much of the edge off the symptoms.  Ugh.

Sitting, standing, laying down, you name it... all very difficult yesterday and today.  And I've had some things to deal with on the computer most of the day so have been sitting upright for a few hours at a time.  And BOY does my upper right abdomen hurt.. all the way through to the back.  I'm really hating this at the moment.

That's where things are basically.  Wish I had more energy and stamina, was in less pain... so I could talk about all the other stuff.  But I have to listen to my body and go with what I know.  It's rather time to chill for a bit, regardless.

More to come...

More to catch up on...

Damn, crazy life...

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 aren't all the risks, but they're 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.

Yeah, and then there's that...

There's always something that ends up in my head that makes me laugh no matter what.  Maybe I've developed my sense of humor into an actual super power; and yet there's still the remote chance that I'm just batshit crazy.  I'll take either one! ;p

Maybe irony and I have become BFF's (does anyone actually use 'BFF' anymore?) and have accepted that being attached at the hip isn't really a bad thing at all.  In fact, this may actually worry some, and I'm okay with that too.  In fact, I consider that an absolute BONUS!

There's just this breaking point I've crossed, I believe, that has changed the way I look at some things.  And not that it's a bad thing (I don't think), but who knows?  Maybe it's just one more defense mechanism falling into place to save me somehow.  Doesn't matter, because I know the end result is that it's also just one more thing for people to totally not get about me.  Yeah, and then there's that...

"You've got issues, darlin..."

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?

My Inner Child is a Bitch

Okay, so having a sense of humor about things is good, always.  But there comes a time when you step right into battle with yourself, all the while wondering how the actual hell can this be?  And there's just nothing funny about that after a while.  In fact, it's down-right depressing.

And yet the irony prevails, sidling up to me with an elbow jab as if to say.. "I told you so!"

Screw it.  I mean, I sit and watch people on FB posting meme after meme after meme laden with self-pity about their having a "chronic condition," and all but one one my friends list who lay claim to their conditions are talking about fibromyalgia, the new designer "disorder" that every tired, achy woman seems to have now.  And while I have my moments where I get completely fed up to my eyeballs with the chronic pain, etc., etc. I deal with every moment of every day, my unloading isn't quite on the public level--at least not the kind of public level that begs for others who ask what's wrong, offer prayers, or cheerfully-canned platitudes.  Screw that too.

Here, in my blog, I can completely unload and not have to worry about what comes along post-post.  I have no desire for my 'woes' (for lack of a better term) to be announced to the entirety of my FB friends list.  Why would I?  Why would anyone?  I may never know the answer to that question, and I'm not sure I WANT to know the answer.

I don't care that they post the "nobody understands my pain" style memes, but... it would be far less annoying if they would use their own words, write something real, rather than use a little picture to express where they are in their lives.  I've seen so many of those memes that I barely notice them anymore... unless they're of the humorous variety!  You post one of those smart-assy memes, and I will read your list of complaints like nobody's business. ;)  Honestly, it's not that I don't know where they're coming from, but rather that it's not really THEM when they post little pictures with what they think contain 'deep meaning.'

Maybe my inner child is just a bitch.  lol  Well, given the fact that when people actually talk, really talk about what's bugging them.. at times I'm moved to tears.  Because, yeah... I really do get where they're coming from.  And if giving a shit makes me a bitch--then I'll wear that hat like a boss!  It's sure as hell more humane than offering fake platitudes (as many do), using canned answers, and not feeling a damn thing for that person.

So about that sense of humor....

I've had to lean on that lately quite a bit, using everything I am to see something humorous in what's going on with my life.  I'm not always successful, but even when I'm not it tends to take the edge off things for a bit.  I'll take it!

And I know when it's not a good idea to take that road of expression.

But I'm finding myself nearly every day leaning on laughing, and not because it's "the best medicine," but because it's the best distraction.  If I can fix it, I can always look the other way and pretend it's not there.  But.. doing so doesn't mean I don't know that bitch isn't breathing down my neck.

It's okay.  I'm fully aware that trying to have an argument with yourself, even inwardly, isn't exactly helpful when trying to solve a problem.  But who cares?  If I'm in that humorous mood and no one likes it---well, that's something they'll have to deal with, because "I" am going to do whatever it takes to survive.

;)

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).