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).

How To Destroy Angels - A Drowning (with lyrics) [HD 1080p]

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 without answers--neato

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... :)

Cardiac Catheter Results: Changing Life From the Inside Out

Most of you know the issues with my heart.  For those who don't, here's a basic rundown for clarity:

Mitral Valve Prolapse since childhood.
Mitral Valve Regurgitation.
Grade II Diastolic Dysfunction.
Mildly thickened Mitral Valve.
Mildly calcified 'other' valves.
Mild regurgitation in 'other' valves.

I finally received the results of the Cath I had last week, and it shows the Mitral Valve regurgitation to be moderate-severe now.   Two years ago it was mild-to moderate.  One year ago it was roughly at moderate.

So far I'm told that they will continue watching to see if it remains steady, or if it worsens further.  Further worsening could mean valve replacement.

All other issues remain as-is, including the Grade II Diastolic Dysfunction.  This will be watched with yearly echoes.

What does this mean in lieu of the ongoing symptoms?  I don't know just yet.  With today being the day before Thanksgiving, I will most likely hear about follow ups next week.  My guess is that it will be a watch and wait situation as it's been for years now.  In terms of symptoms, I still don't know my CT results, what my pulmonary doc wants to do (if anything) about the mild COPD, nor do I have my liver biopsy results back and what, if anything, the results could mean.

All is up in the air, and I've no idea why getting results back is taking so long.  My GI specialist has had my biopsy results back, but they've not discussed them with me.  I called the other day and the person on the phone knew exactly who I was when I asked for my results.  They have them, but they've not contacted me about them.  Ugh.  I really just want to hurry up and cross stuff off the list of things to keep dealing with.

Holidays, the Non-Gift Giver and the Gift of Giving

Sounds so cliche, doesn't it?  In a time where 'black friday' means people literally trampling each other, sometimes to death (yes, this has happened) to get to the 'best deal,' I can only shake my head and wonder what things have come to, why people are focusing SO heavily on 'stuff.'  I have no problem with the whole 'Christmas package,' meaning the tree, the trimming, the gift giving, the music, and all the little traditions most of us remember from childhood.  I LOVE this stuff.  And for the record, this isn't a religious discussion (I'm Catholic), so I won't be touching on THAT aspect of the season.  Just so you know.

Gifts.  Depending on the person gifts can hold different meanings, different associations, and have very different affects.  Some people are very hard to please and require expensive gifts, while others are quite content with small items with big meaning.  I fall into the latter category.  To me, a well-thought-out gift is worth more than all the jewelry, diamonds, or money in the world.  If someone where to give me a crazy, unique, or spooky stuffed toy... then they've given me gold.  I'm not that hard to please.  Having said that, what about those who live with someone who isn't a gift-giver?  How does that work?  Well, that depends too....

Know who you're with.  Sounds easy, doesn't it?  Well first off let me say that for the sake of this conversation we're going to talk about men--men who aren't gift-givers and what it means.  DO know that I fully understand and am aware that there are women like this out there, but the majority tend to be men.  Women are rather hard-wired for being people-pleasers.

Know who you're with.  You can't really choose a meaningful gift if you don't know who it is you're buying for.  Well, you can sometimes come close by focusing on trends for particular age groups and gender.  But that's outside of the scope of this conversation.  If you know who you're with, then choosing (or making!) a meaningful gift is a no-brainer.  All it requires, really, is for you to actually give a crap.  Blunt?  Yes.  And there's no reason not to be blunt.

Respect who you're with.  THIS is the key, folks.  THIS is what makes or breaks relationships.  It's more than an ideal, it's a necessity.  If you don't respect WHO you're with, you're doomed, dude.  Plain and simple.  Might as well give up right now, because that relationship isn't going to last.   And if it does, it will be one miserable time for all.

Respect is the foundation for every single relationship in your life.  It doesn't matter if it's home, work, family, friends, or enemies.  If you have genuine respect for someone you're going to be pretty damn close to being on-target with just about every situation with them.  I promise.  The only time respect on YOUR part won't work.. is if that person doesn't respect YOU.  But that's another talk show.

Respecting someone for WHO they are, and this is very important, means you KNOW who they are and ACCEPT them for who they are.  If you don't get this, you're screwed.  But getting back to the point--when it comes to gift-giving it's not about YOU, the giver, it's about THEM, the receiver.  A gift isn't something you do for yourself, but something you do for another.  And it's utterly shocking how many people don't really get this.  Now, is there something in it for you, the giver?  Of course! And that, my friend, is a very personal thing, so I'm not going to go into that here.  But giving a gift is NOT about you. Know this first and foremost.

It's okay to make a mistake.  For lack of a better word, I'm using "Mistake" for clarity and understanding.  Even if you know someone well, you can choose the wrong gift in some people's eyes.  Get that?  In SOME people's eyes.  I'm also not talking about people who don't APPRECIATE a gift, so let's not focus on that, because it too is another talk show.

You get the wrong size, wrong color, a music cd of a band you think she liked.. only to find out.. she hates them.  It CAN and DOES happen!  But the difference is.. how many times does it happen?  A couple?  And is it really an honest mistake on your part--because she's going to know.

If it's an honest mistake, a good woman is going to know.  If it's carelessness, she's going to know.  If you put NO thought into it (here's where knowing and respecting that person comes in), she's definitely going to know.

But if it's truly an honest mistake... it's okay.  Either she'll be sentimental and suck it up and keep the gift, or she will exchange it.  So.. how you react to those things are up to you.  Just know that it's REALLY not a big deal.

I can't say I see any gift as a mistake.  Well, if you buy me men's cologne.. then yeah, that's a huge mistake. lol  But for the most part, the effort speaks for itself.

The guys who aren't gift-givers.  Now this is a big one.  And a complex issue.  So I'm going to attempt to not make even more so.  Some guys aren't big gift-givers, but they show love in meaningful ways.  I mean, how can you fault that?  You can't.  Tenderness, care, compassion, friendship, being a good listener, being a strong support system for whatever is needed, and being her biggest cheerleader.  Oh yeah, those things... are worth more than gold.  And if you have that, CHERISH it with all you have!

The flip-side to this whole gift-giving thing is what's often lost on some guys.  YOU may not be into it, but if SHE is, then why not participate in something that brings her joy?  I can't speak for the situations where 'she' wants excessively expensive things, but I can say that for women like me, who are happy with the little things, it really wouldn't take much effort to make Christmas 'super cool.'

I'm with someone who isn't a gift-giver, and there are other issues that overshadow that.  BUT, it would take very little to make Christmas an absolutely lovely affair.  But T doesn't really feel ANYTHING about the holidays, outside of a religious nature that is, and so I'm left to putting up a tree and decorating by myself.  This wouldn't be such a big deal if T appreciated any of it.  Last year the tree was decorated, as well as a couple of rooms, and he walked through the door and noticed not a single bit of it.  It was a surreal and strange experience, and one I'm not willing to go through again.  So this year, I'm decorating for ME.  What this means is I'm decorating the tree and house the way I want to.  Well, given my health isn't kicking me in the ass too much to actually decorate.  Just know this, guys, when things get to this point, when she's creating all the experiences and memories by herself... she's literally living 'by herself' in your presence.

When she's creating all the experiences and memories by herself... she's literally living 'by herself' in your presence.

I'll let that sink in a moment...

There are men out there that literally have no appreciation of the gifts given to them, the time, effort, money, etc. put into choosing just the right thing.  Seriously, guys. even if it's inexpensive, it should still be meaningful and memorable by you.  Some guys show their utter lack of appreciation for gifts given to them by actually FORGETTING WHO GAVE THEM THE GIFT!  And oh yes, this happens.  In my own experience... I gave a gift to my ex, a bear, and he GAVE IT BACK to me a year later.. as a gift!  He 'thought' he'd bought it.  But I actually had/have photos of when I chose it, purchased it, and took it home.  I hand-delivered this gift to him, and he didn't even remember who gave it to him to begin with.  And to make matters worse is---his 'shopping' in the stuff he had around the house to find me a Valentine's Day gift.  Wow.  A hand-written love letter would have blown me away, and it would've cost nothing but a few minutes of his time.  *sigh*  Guys... don't do this to your wife or GF.

If you're a guy who isn't a gift-giver, consider trying to do that for her.  Maybe it doesn't come natural to do that, but it can become a sweet habit if you simply... practice.  Don't have the money to buy her a bouquet of flowers... buy ONE!  Buy a rosebush and plant it for her (the gift that keeps on giving).  Whatever it is you do, put thought into your choice, make it say "I know you," "I see who you are and I love that about you."

Thoughtful gift givers put actual thought into the process, don't overly focus on cost (staying within budget, though) but on choosing something that fits that person, watch for clues as to what might be the perfect gift for that person, plans ahead--doesn't rush out at the last second and choose whatever's easiest, and makes their choice from the heart.

Not a gift-giver and unwilling to try?  If you simply can't be a gift-giver, then at least get out of the way and let her buy her own gifts.

It's really simple when you think about it.

I can't believe I did this

Okay, so.. there was this 'ad' on FB about something called "My Social Book."  Curious, I checked into it and discovered that it's actually a company who makes a hard copy of your FB experience! lol Well, at first I thought.. naaaaaaaah.  But then I read some comments others made about it and thought I'd give it a look.  Glad I did, actually.

One can spend a tremendous amount of money getting this book made, depending on how far back you want to go.  The limit is about 500 pages, which can cost a bit over $100.00..  however, you can get the smallest version for roughly $20 + tax. And that's exactly what I did.

I opted for the soft-cover version to save money, but it's actually pretty nice.  You get to choose your 'cover' and pic you want on the front, and you have some control over what's printed, and YOU choose the time frame if you're doing more than one year.

It was kind of funny, parts of it, and other parts are sweet....

Overall, I'm glad I did this. :)

I mean, how can you go wrong remembering all the stupid, hilarious memes you posted, right? hahaha  But seriously, there's more 'substance' there than what shows on this particular page.. which I chose because I found the contents hilarious.

Either way, I would actually recommend people doing this if there's anything you want to place in a keepsake.  I'm really digging mine and am considering getting one from 2013, and maybe one from my old profile from back in 2010, 2011... just not sure yet.

Oh, and your stickers and emojis also show up on these pages.  I mean, pretty much everything when it comes right down to it.

Again... very glad I did this.

No regrets.  :D

My prayers are with France....

You know, I've been warned NOT to post here about controversial topics, and for the most part it makes sense, really.  Because my blogs aren't about politics or policy.  But I'm pretty damn pissed off at the moment... at our lazy, incompetent president.  He's a piece of shit, and we all know it.  But what really angers me is that he would immediately display the rainbow colors on the white house to honor gays... and as the entire world lights buildings with the blue, white and red colors of France... the white house remains.... indifferent.  What the hell, Obama????  WTF is wrong with you???!!!????

Thankfully, many buildings have been lit with the blue, white and red, and even here in Montgomery I've noticed flags flying and half-staff.  There are even electronic billboards displaying the French flag with #PrayForFrance at the bottom.  So what gives, Obama??  I suppose you're as cold and indifferent as they come, as we've come to know you.

But we Americans ARE with France, and we're praying for you.  We stand by you!  Know this.  Even if the embarrassment we call 'President' is a POS.

God bless France!  God be with the world during these terrible times.

All's well with the plumbing.  Electrical was address last year.  As far as other functionality, I still need to address the diastolic dysfunction, and of course... keep an eye on the MVP w/regurgitation, the valve issues, etc.  Just a watch and wait thing. :)

As an aside, I discovered something interesting yesterday that somewhat surprised me.  Xanax rocks.  rofl.  Never had the stuff before, but they give you one w/Benedryl as pre-meds prior to the cath procedure.  That didn't happen the first time I had a cath, so... I had no idea what the big deal was about people liking Xanax.  Basically, for anyone who doesn't know, it breaks your give-a-shitter.  lol ;p  Just useless information I find funny.  I'm actually quite glad they gave me that, because half of the meds they use for conscious sedation is morphine---which I'm allergic to.  And, just like the transjugular liver biopsy I had last week... I was awake!  Ugh.  And DAMN did that lidocaine hurt like a mofo when it was injected in the area surrounding my femoral artery!  GEEZ.  Not a fan of that, btw.

Just saying.

Spilling Over

I guess I should remind some of you who may not know, that if something is bothering me particularly.. I will most likely post it in all of my blogs.  The spillover from one to the next is just something that's going to happen.  Most of the time I aim to separate what I'm talking about between each one so that the meaning isn't really lost in context.  Make sense?

My blogs overlap, though they're meant to be focused in one aspect of my life or another...

Boo's Juicy Bits:  The main aim here is health, diet, eating, all the things that support and give us a foundation for a good (or bad) life.  There's so much to this part of health, so there will be at times an overlap as to what's going on the pages.  If life is getting in the way, or helping me on my way, the details will most likely end up there as well.  And don't be surprised if you find sexually-focused chatter on there as well.   The information is all connected in one form or fashion anyway.

Where Fireflies Dream:  Created as a place for whimsical thought and ideas to play, an expression of who I am, how I dream, what I want, and the things that can or do hold me back from my greatest expression of self within my life as it is at any given point.  Again, be aware that at times topics of a sexual nature will most likely appear in posts.  Don't say I didn't warn you. ;)

This Free Spirit:  The newest blog and one I feel is necessary, even critical for me.  It's a place to talk about abuse.  Been there, done that, and still haven't gotten 100% past the damage, to say the least.  My goal with this is sharing in hopes it will help others, but also to have a place to talk/deal with the lasting effects of my experiences.  This one will often have chatter of a sexual nature as well.

All Things Ephemeral:  Originally, this one was created to let it all hang out, a no holds barred kind of place to talk about EVERYTHING in great, bloody detail.  The nature of doing this means that, in the past, I would often delete posts after a day or two, a week, a month, whatever... because it was a bit much to leave just sitting there for the whole world to see.  However, this is changing.

I will be taking that no holds barred approach with posting there soon, as it's one of the greatest barriers I need to cross in order to heal.  Like Pavlov's Dogs I learned through experience that expressing myself openly meant I would pay a price, a high one at that.  But since this is no longer the case I plan on resuming, for personal growth and healing, my once bold approach to using this blog exactly as I intended---a place for me to be free to express myself in any way I see fit!

Onward...!

Still fighting to find my bearings

Something isn't right.  "Something" hasn't felt right for a few years now, maybe since about 2012, maybe 2011.  When things break, the pieces often remain, cutting their way through the soft fabric of life.  I guess I'm realizing I was more malleable than first thought, and the strong, restraining hands of  someone I loved reshaped parts of me that I actually liked.  Not to say I'm not still in here--because I absolutely am.  Such is the part of me that fights like hell to keep me safe, protected from all the hurtful, jagged edges of what's left.  Because.. the parts of me that didn't mold to the whims and needs and demands of that person...shattered.  Where am I?

The barriers I've built around me have protected me in some ways, and they've also crushed me in others; Vulnerability is no longer something I give into.  Instead, I strive to be the strongest I've ever been, though it's not a comfortable posture for me.  So what of the discomfort, then?  It is what it is and it will remain because of my will.  It is MY will that allows or disallows what happens to me as a person, a woman, a friend, a lover, a mom... every facet that makes me who I am is ultimately at the mercy of MY will and no other but God's.  His will is ultimate, but my will is His gift to me.  And no, I'm not going off on a religious tangent.  I'm simply taking responsibility for the damage I allowed others to do to me, and also for my inability to completely regain control of the clanging thought-machine inside me that clatters on and on.

It's just one of those days sitting in the midst of one of those weeks in what I now call one of those lives...

I'm dealing with illness because of the unrest and DIS-ease I've felt for so long, with the majority of it beginning when I blindly walked into a situation I didn't want to recognize for what it actually was.  I fell headlong right into the abyss and hit bottom.  Dammit, but I should have had my own back.  I have a good understanding of this NOW and am being diligent, watchful.  And yet, contemplating what my life is now in the wake of the experiences isn't exactly pretty.  Not at all.

Nothing is improving.  My health continues to worsen, and all the tests I've gone through over the past few weeks, all of the tests I'm going through THIS week will tell me where I am in all of this.  While it may not be the best course of action on my part I will wait for the doctors to render their final diagnosis and allow them to push me in the direction I need to go.  I'm so bogged down in near-defeat that I can't seem to propel myself in the right direction.

I will let the current take me.

I dream you're still here...

Break out the Fava Beans and Chianti..

Ok.  Ok.  Just kidding.  First of all, the pic of the flowers (yes, enhanced for artistic effect) were given to me by T yesterday.  I have to admit I was very surprised, but he said he knew I wasn't feeling good and wanted to do something for me to make me feel a little better.  The gesture is incredibly sweet, and it comes on the heels of some news.

As you may know from reading other posts, and/or my other blogs, I had a transjugular biopsy on my liver a couple of days ago.  Yesterday I received a call from my GI/liver specialist's office telling me he wants me to have an ultrasound on my liver on Monday to double-check some things because they found elevated portal pressures (hepatic portal vein).  I told T I had an ultrasound scheduled on Monday (also have another appt with my hematologist at the same hospital) and why.  I guess maybe he's getting the idea now that I'm not making up symptoms and that I really do feel this bad.

This is the most difficult about having chronic illness, or just an illness that doesn't present with something you can see clearly with your eyes.  Many times there are signs and clues, such as deepening dark circles under and around the eyes--to the point where it looks like someone hit you in the face, maybe the person's eyes look 'duller' and less bright and 'open,' or maybe it's a number of things that, had you not seen the person for a while would startle you.  Too many people suffer with different illnesses and are often not believed, shrugged off, and worse... because they can't SEE everything going on.  Even with a diagnosis it seems that, unless it's cancer, etc., no one believes that you can be extremely sick and still be able to stand.. at all.  I simply don't get this brand of compassionless thinking.

I'm not going to focus on people who lack compassion or the ability to try and understand what they've not experienced, so I will leave my thoughts on the matter as-is.  Right now my focus, my goal is just to continue to wait for test results in order to get answers, as well as solutions.

Staying in a peaceful mindset is going to take a bit of work today.  I'll keep trying just the same.

What's left

I have to admit that beginning another blog that focuses on emotional abuse, etc., has been good for getting things out that have needed letting out for some time now.  And even if I can't help myself through this, then maybe I can help others.  There will be entries of what I've been through, how I felt about it, their effects on me then and now, and much about moving on, recognizing where I've been and how it's changed who I am--for better or worse, and how my world is post-nightmare.  Either way, it's all good considering.  Considering...

I have so far to go even still.  In the aftermath there remains no closure.  I will find peace with it all eventually.

Today I'm in a place that's leaving me tired, worn, and still as confused as ever.  The situation with T is still an ongoing thing in which it appears he has no desire to change the behaviors that hurt, belittle, and depress me.  Depression is rage turned inward; I'm sure you guys have heard that.  And it's true.  The trick in getting past that is to know WHO or WHAT you're actually enraged at!  Fun stuff.

In my world, as it is now, I have to make my own way through the muddle without a support network.  All the health issues, the isolation, the loneness that comes with being in a new place and too sick to get out and meet people, it all has taken a great toll on everything I am.  There IS a strong element of depression, situational as it may be, it doesn't seem to want to lose its hold.  Taking an antidepressant is completely unappealing to me, and it's not an option anyway due to being on a blood thinner.  So the question remains---so now what?  Tired of having that question hanging overhead while seemingly no answer exists for this dilemma.  Crap.  Crap.  and CRAP.

*shaking my head*

Another day perhaps...

PART 2: Priorities revealed

Assuming you've read PART 1, I won't rehash the entire experience.  And I've spoken of my disappointment (for lack of a better word) in that T has the worst hierarchy of priorities that I've seen in a few years.  And in light of his absence during yesterday's procedure shows me more than ever where he is, who he is, and what he is.

When I was informed yesterday that the procedure I was having was more serious and carries far more risk than 'just' the biopsy I thought I was having, my radiologist asked me if I had anyone there with me.  The fact that I was alone in the section where I waited to be taken to my procedure didn't deter him from asking, because.. after all... I was the only patient there who didn't have anyone with them.

I told him T had dropped me off and went to work;  and he just looked at me for a moment, sat down, and began telling me (using straight-forward language) how "Tricky" the procedure I was going to have, how serious it was, and about the risks involved.  He said if I wanted to call T and give him an opportunity to come back to the hospital so he could be there as it's being done that they would hold off on performing the procedure until he arrived.  The radiologist left the room, and I called T...

T's reaction?  "Well, they have my contact information so that if anything happens they can call and I will come there."

I sat there for a split-second taking in his response, then was filled with the overwhelming need to hang up the phone, to NOT hear his voice at all.  And while this isn't the first time I've felt this reaction, it was by far the strongest I've felt.  I instantly went into self-preservation mode and wanted him nowhere near me.

The nurses, doctors, and other supportive medical staff were the only ones who made me feel like I wasn't completely alone.  I accepted that for what it was and allowed myself to just focus on what was about to happen and put T far, far out of my mind.  In fact, to be honest, he didn't enter my mind at all until at the end of recovery when I was told I was being released.

What does this mean?  That's not a question I'm asking myself, because I already know the answer.  I've been there, done that in the past with someone not giving a crap about my health, my well-being, and diminishing what I was going through or dealing with.  Has society really become a nation of zombies who have nothing but bricks for hearts?  I'm certainly beginning to think so.

I was supposed to go home and rest, not strain myself, no lifting, not even driving.  But T had other plans, ones that made HIS life ultimately easier.  Because that's what it all boils down to.  The aching in my neck and liver had begun, so I prayed that the medication I was given at the hospital would kick in soon and I at least wouldn't be in pain.

A heart cath is scheduled for the 19th of this month (November), and I was given a lab order to get blood work done prior to that day, as soon as possible.  T decided that since I was "Already out and about" that I should go to the lab to get the blood drawn.  I was painful, loopy, tired, and I wasn't at all up to walking through a parking garage and hospital in order to get blood drawn.  I just wanted to go home and rest.  That's all.  Just go home and rest.  But that wasn't about to happen.  T would have his way, and I would simply have to suck it up and deal with the unpleasantness.

This isn't the first time I've been with someone who lacks compassion, but at least I now know how to deal with it while protecting myself at the same time... thanks to a couple of past relationships.  At least I was smart enough to learn from the experiences, and while those lessons were necessary and taught me much, it doesn't mean I'm not feeling the effects of what's happening.

Deja vu.

I'm still processing everything, having just gone through this yesterday.  I've no real thoughts on the matter other than the obvious that one would expect to have after such.

I'll come to terms with things---perhaps when I feel stronger.

PART 1: I wasn't supposed to be.... awake.

But I was... the entire time during the procedure.  It's not exactly the nightmare they make movies and write books about, but it more than surprised me, and it most DEFINITELY surprised the radiologist performing the procedure.  Really.  I was supposed to be asleep.

I arrived at the hospital yesterday morning to have a liver biopsy done.  I'd already researched enough to know what to expect, talked to people in the forum I belonged to to hear their experiences.  I wasn't expecting to be this surprised.  Oh, but I was.. and in more ways than one.

When the radiologist came in with another doctor to talk to me about the procedure, what to expect, how it will work, etc., he mentioned HOW they were going to access my liver.  Now, this is where the first surprise came in...

He began telling me that Dr. S wants things done a particular way and that the procedure I'm having is "tricky" because it involves entering the jugular vein and inserting a wire that will be able to reach the portal vein in the liver in order to check the pressure there.  He began telling me the risks to the heart and lung and liver.  I listened, but I was confused because I thought I was to be there for just the biopsy and didn't know anything at all about checking the portal pressure.  Skipping ahead...

We talked a little about the procedure, and the radiologist reassured me that Dr. S was very specific about what he wanted done.  I asked if anything bad had ever happened during the procedure with anyone he's done it on and he said that the only thing that has happened in his (long) career was one patient's heart went out of rhythm and wouldn't go back in, so they had to stop the procedure, send him to the cath lab to shock his heart back into normal sinus rhythm.  Ok.  Only one event.  So I said..  "Ok.  Let's do this."

The Dr. assisting the radiologist explained about the two medication that I'd be given, that I wouldn't be put completely under but would be unaware of what's going on and wouldn't feel anything, except perhaps the lidocaine they would use on my neck where they would make the tiny incision to access the jugular.  He said I would just 'sleep' through the procedure and would not have any recollection of it at all once it's done and I'm awake.  I was familiar with this because I'd had a heart cath in 2013, and ablations on my heart in 2014... so that twilight sleep I know about and have experienced.

...Off to the OR we went.

Once on the table the anesthesiologist told me she was giving me the first dose of sedation, and that it would be done in stages until they're ready to begin the procedure, then she added "The lidocaine may bring you out of this for a moment because it stings, but it will be brief."  By the time they were ready to begin I was loopy as hell, but I was awake.  One last dose was given, because I was awake... and I think I nodded off for a minute or two.  Then I was awake again.

Awake, aware of my surroundings enough to hold a conversation.

I heard the radiologist say he was administering the lidocaine.  Oh yeah---I definitely felt that.  But it quickly receded and I felt nothing in that area.

I felt the cath wedge go into my jugular, and I continued to feel it go down my chest, felt something strange with my right lung, felt it proceed past my heart--to which my heart fluttered a little--and then nothing... for now.

I heard every word said, heard the radiologist talking to the doctor that was there, even remember hearing him calling out the numbers once he began reading the wedged pressure and free-flowing pressure.  I remember the numbers exactly.

A couple of times the anesthesiologist raised the blue drape over my face to look at me, and I returned with a smile.  Then... they changed Caths and went back in to take the biopsy samples...

The first "snap!" I heard had only a little discomfort with it.  The second "Snap" was a bit more painful and I said.. "Oh, that one smarts!"  This was the first time the radiologist knew I was awake.

"How much did you give her?" I heard him ask the anesthesiologist.  "She's awake."  She responded with the dosage she'd given me, and he said.. "Wow.  I would be on a vent if I'd had that much."  He has a smile in his voice, so I know he was just joking a bit. Plus I was familiar with this radiologist as he'd done the biopsy on my thyroid nodule a year ago.  He's good guy, a really skilled radiologist.

So the third "Snap" I heard came with significant cramping across the entire front of my ribcage, where the liver is.  And oh yeah.. THAT one definitely hurt.  And folks, I have a high pain tolerance for stuff like this, having kids, etc.  So when I say it hurt.. I mean it.

Once they were finished they removed the blue drape and one of the nurses told me she was applying pressure to the little hole where they'd entered the jugular.  She told me there may be a bit of a bruise there and that she was sorry if the pressure she was applying hurt.  It really wasn't that bad, and I told her so.

As I lay there with pressure being applied to my neck the anesthesiologist came over and apologized that I felt pain and explained she wasn't sure why I remained awake.  I assured her that it was okay and that the pain I did feel didn't last a long time, that I was okay.  They returned me to recovery.

I told my nurse there what happened, and she looked at me as if I'd grown a third eye. lol  The other nurses turned around (my bed was right next to the little desk where all the nurses sat) and gave me a look of horror. haha   Hey, no events... so to me this was a good procedure.

I'll have the results in a few days, I think.  But I don't believe I have portal hypertension at all.  I believe Dr. S just wanted to make sure due to some of the symptoms I was having.  As for the presence of any cirrhosis... I don't believe that's the case either, or Dr. S would've seen the prominent veins in my esophagus etc. when he did the EGD a couple of months ago.  What I DO expect is to see  if NASH is actually present and to what extent, and if there is any fibrosis or not.  I fully expect the outcome to be okay, with perhaps  NAFLD or maybe NASH if inflammation is present.

New blog, and the anticipation of the unknown.

My new blog, "This Free Spirit," is helping.  As long as I put what's needed in the entries it seems to lift the weight a little in doing so.  I'm really liking that there's success in this whole journaling thing. Unlike "This Free Spirit," my entries in the other 3 blogs, including this one, may be only somewhat focused at the moment.  However, I'm slowly but surely finding the lines a little less blurred as I go.  Soon... I will have the blogs focused on their intended purpose.  I'm getting there.

Tomorrow is my liver biopsy.  I'm not saying I'm scared, exactly; I just don't like the procedure itself. To top things off, T had one response to my having this procedure---"Do I have to be there?"  *sigh*  Way to make a girl feel loved, dude.  This is really become commonplace with him, where no matter WHAT it is you're dealing with, what needs to be done, etc... it's all about what's convenient for him.

My heart cath had to be scheduled 2 weeks later than they wanted (the dr wanted it done THIS week) to accommodate T's schedule.  Again, he has an overabundance in accrued leave that he's rarely ever willing to take.  When he reaches the point where X amount of hours will be lost if he doesn't use them, that's when it makes the most sense for him to do so.  And I can't drive myself to/from the cath procedure, so... what do I do?  Call a taxi?  The procedure itself requires certain care instructions that include not being home alone afterwards (in case of rupture of entry point/incision--femoral artery), NOT DRIVING (risk of rupturing the artery incision), not being able to lift, bend, stretch, etc.  If I don't have family or friends locally, then what?  T is NOT the guy (and not the only one I've been with) who is NOT the best person to have around when you're recovering from ANYTHING.

But here I am anyway, knowing I've been there, done that already.  I had a thyroid biopsy last year in which I went alone.  He didn't even ask how it went, etc.  Okay.  Sounds like no big deal, but when you have a procedure where they're trying to rule out cancer... it's nice to have someone there with you.  I was the only one in the recovery area who was alone.  lol  That was my first clue as to what I was dealing with.

In some ways I've venting a bit here to avoid thinking about tomorrow.

Purity Ring - Obedear [HD]

Like I need another hole in the head

New blog.  Honestly, sometimes I wonder where I get all the time to post in all of these.  In some ways having the focuses of my entries in separate blogs helps me maintain cohesive thought.... well, at least I TRY.  Expressing everything in one common place just makes for a serious muddle in which it's difficult to sift through sometimes.  I mean, I revisit some of my entries to see where I am.  I mean, isn't that what a 'diary' is for?

Well, this new one is about the ongoing processes of working out past injuries, as well as current ones...

Either way, it was a moral imperative.  Finding my way in the dark is a necessity, and the link below will provide you with a window on which to see this happen.  It's not always going to pleasant...

This Free Spirit

OR

http://abusebondsbroken.blogspot.com

Narcissists Destroy Who they cannot Control

For anyone who may be involved with a narcissist, please watch/listen to this video.  It may be the very thing that changes your life... for the better.  If you know what you're dealing with, you can regain control over your own life and set yourself free... once and for all.  It's critical that you take charge, and take your life back before more damage is done.

PART 2: Selfishness as a matter of convenience (Where's the respect??)

I'm unimpressed.  I'm completely unimpressed by T, and by the way most guys treat women.  In my particular case, the disrespect is dehumanizing, demoralizing, belittling, and disappointing beyond anything I've known.  It's not just this relationship, but in the past as well.  My choices have NOT been the greatest, and my guess it's because I'm trusting and take people at face-value.  This is NOT a good thing.  At all.

As of yesterday a new low has been established, and I'm in no position to do anything about it.  Thus is the case when dealing with control freaks who refuse to see that they're actions are completely selfish and self-serving.  DON'T VOLUNTEER to do something for someone if you're only going to use it to gain control over that person!  DAMN!  How hard is that to understand?

All my doctor's appointments are now between my doctors and T.  Why?  Because ALL appointments aren't about what's necessary, or needed, or critical, or about doing tests etc in a 'timely fashion.'  Nope.  NOW my appointments are about what's convenient for T.  It's about what he does or does not feel like doing, what works with his schedule (he's been told he needs to use a lot of his leave or lose it), and none of it has a thing to do with... me, you know, the actual patient.

Yesterday was a disaster, stressful beyond reason, frustrating in that I'm basically told I no longer have any control on when or what time I get an appointment.  *sigh*  One major symptom of late makes it dangerous for me to drive much beyond a few miles of my house.  Dizziness/vertigo doesn't exactly translate into "safe driving."  So I'm stuck for the time being, screwed beyond reason, because I have to wait for T to decide when I can see my ENT or Neurologist regarding the severe tinnitus, vertigo and dizziness that's come on over the past couple of weeks.  I sit.  And I wait.  For HIM to decide when it's a good time to see the doctor about this.

Why the F***K am I here????!!!!  Being here is unhealthy, both physically and emotionally.  It's detrimental to my health and well-being, and the inner workings of living in this house with T has destroyed my quality of life.

Now, some of you know my recent history with relationships and know what I've gone through.  I also know what you're most likely going to say to me and expect that email eventually.  It's okay.  Send it on.  Maybe I need to hear that.. 'again.' ;)  Either way, you're most likely seeing something familiar in all of what I'm writing, in which case I will say... I do too.

More later.  I promise... the flood gates are open now...

Finally.