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.

Above and Beyond the Beautiful: Food, Diet, Health.. or something else?

Life.  My life.  Not a single iota of it makes any sense to me.  But I am aware that there is great beauty in the world, natural wonders and love that runs deep and steady; they just don't exist in my current place in life.  Chronic pain has its effects, and when it's relentless all meaning of things once important to me slips away.  I don't include my children, etc. in this, btw.  But the meaning of my own life has turned dull and gray some time ago, and my current situation is key to holding that dullness in place, steady, and keeping me in emotional shackles.  Finding my way out of it all has become all-important.

Worrying about my current state of health isn't to say I'm scared of diagnosis, prognosis, etc. as much as I fear not being able to LIVE, to feel good, vibrant, energetic, and to reach for and achieve that which is so important to me.  It's not the ability to live that scares me---it's the inability to live well and happy.

I currently have no quality of life.

I have to decide from day to day if I have enough energy and am without pain enough to even dare to dream of the future, what I want and need in my life, where I want to go and how I want to get there. The physical pain is now all-consuming and the backdrop to every single event (few as they are).  How I get from the beginning of the day to the end is the only thing I can focus on.  How well will I sleep if at all?  Will I be able to sit, stand, walk, or lay down comfortably?  Will I be able to eat with the constant queasiness and nausea?  Will I be able to tolerate having T around me?  Will I be able to handle his indifference, self-centeredness and self-serving behaviors?  So many questions I have to answer every day and every night, and too many times I don't have answers, nor solutions, no cures or fixes, and no method of coping if not.

To be brutally honest, there are days when I know I would welcome going to sleep and not waking up.  The pain, the physical pain... is that bad, and mostly because there is absolutely NO respite from it, not even sleep.  No respite at all, not ever, not a moment.  I don't understand it, and no doctor has yet to determine the cause or find a solution.

I just have to get through today.

I just have to get through today.

....just today.

Is it my diet?  My attitude?  Will nourishing my body in a healthful way help me at all?  How do I convince T of what I need to do to get well, to thrive, to LIVE???!  Ultimately I have no control over most of what happens in my life since T came into it, and I believe it's time to put my foot down so that I can put myself first, for my health, my LIFE.  I'm not going to make it very long with things as they are, and I'm not going to heal and acquire health if I don't take precise steps to obtain that.  Why is he so resistant to my getting well????

I'll worry about tomorrow when it gets here.

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.

Boo's Juicy Bits....

I've strayed more than just a little from the intended purpose of this blog.  But then, maybe I didn't if I'm simply following the course of events while trying to regain my health and happiness again.  At the basis of health and vitality there is nutrition, and I STILL believe wholeheartedly that a plant-based diet is the best course, as long as you follow the rules and not get yourself into trouble with deficiencies.  I had an undiagnosed iron deficiency which made things very difficult as far as eating vegetarian.  It's okay, though, because correcting the anemia and replenishing absent iron stores takes precedence over focusing on a vegetarian diet.  What I needed the most was iron-rich foods, and HEME iron at that.  But this is really not the focus of what I'm trying to say here....

Back to the health and vitality part...

In order to have emotional/mental vitality, to be at the top of your game, to live strong, feel strong, to THRIVE... you of course need to have good health.  Seems like a conundrum, doesn't it?  It is.  And it isn't.  Though that's not to say it's easy trying to find out what came first.. the chicken or the egg.

So yes, this downward spiral of health began a few years ago, and in THAT respect I can recognize very well, in retrospect, which came first.  Emotionally I was fighting a losing battle, at odds with someone I loved immensely, and wrongly trusted with my heart AND my mind.  I made a mistake in that, sure, but the damage was done and it wreaked major havoc on my health.  I'm STILL dealing with the after-effects.  It's a process.

Choosing to work through this on another (new) blog, "This Free Spirit," is helping.  But actual healing is going to take much more than that--this I know.  Stuffing the emotions down via new age voodoo isn't going to do it, because it's STILL there... even though you've lost access to those feelings.  I promise you, this is the very LAST thing you should EVER consider to try and 'rid' yourself of damaged you've sustained to your 'self' by others, or by your own doing.  There are far too many ways to help people ESCAPE the feelings.  But again, those methods only BURY them deeply so you don't recognize what it is that you're dealing with anymore.

The ONLY way to truly heal is to FACE those demons head-on, because they really suck at being quiet or laying low.

Seriously.

Here is the part where I CHOOSE to change my focus, while still acknowledging what I'm dealing with.  Here is where I return to the intended purpose of this blog---health, eating, etc.---while still sharing life effects that remain a backdrop to such endeavors.

Life...