MRI, Lab Results, and Fireflies!

The problem with my shoulder has gotten much worse and I'm pretty much unable to use my arm for little more than simple tasks... such as typing.  I was referred to bone doctor, who sent me for an MRI, which was yesterday.  An hour long MRI... did not sit well with my body at all.  I won't go into all of that now, but... now I wait to find out if it's a torn rotator cuff, which the bone doc thinks it is.  So much for that.

I also received a call from my PCD about some labs that were done about a week ago, and I'm once again being referred back to my hematologist.  Ugh.  The last time was about a year ago and was  for low ferritin (anemia).  I received iron infusions for that and was fine in that respect, and my ferritin levels were restored to normal.

THIS time, my ferritin is elevated.  Again, the last few tests it was right in the normal range where it should be.  I don't eat much red meat (not a big fan and prefer a plant-based diet), and any protein sources usually include chicken and fish mostly, and on occasion... red meat.  My multi-vitamin does NOT contain iron because I'm in pre/meno so well, to be blunt, I don't get any visits from Aunt Flow or Uncle TOM anymore, not in almost a year now.  No need for iron in vitamins when this occurs.

Anyway, so... I have to see the blood doctor to find out why.  Not sure if timing is the key here, or if this is just a really good indication that I'm NOT dealing with hemochromatosis, which is iron overload.  I don't believe for a second I have that.  But it still is almost always due to liver issues.  Ugh.. which most of you guys know I already have (Autoimmune Hepatitis, or AI).

Thankfully my ferritin level is only mildly raised... but I was told it's still needs attention because it means my body is absorbing more iron than it should.  I do have to say I find this odd since I really do eat very little meat.  No telling wth is causing this, but... another wait and see situation I guess.

On another note---FIREFLIES!

I've seen a few of these little guys flying about lately, but there were MUCH MORE yesterday.... and that's beyond awesome!  I DO NOT EVER, NOR DO I THINK IT'S OKAY to catch them in a jar!!  They're population is dwindling---a very sad fact---so in the very short season of their lives... let them live!  They have to have firefly nookie to maintain their population!  lol Well, it's true!

So my front and back yard is covered with them in the evenings... and, the big light at the end of the driveway is being turned off.  It's billed to us, so we can choose to have it on or not.  We're choosing NOT to have it on due to artificial light hurting the mating process of these amazing creatures.  We also don't over-mow the lawn so as to allow as much of the population to grow as possible.

I.  Absolutely.  LOVE.  Fireflies.

Carrying on, but on a different approach to diagnosis..

So, as you guys may know (if you read my entries) my health has been chaos over the past year or so.  Okay, so before that too, but lately it's hit a whole new level of 'bottom.'  It is what it is.  Recently, due to being pretty much bedridden I began to wean myself off as many medications as possible, and so far... it's not helped.  But I think what's left to explore is possibly key.  About that in a minute.

I'm on a few medications.  A blood thinner due to a TIA in 2013 attributed to Afib, etc. I had ablations for 3 arrhythmias.  Two different medications for GERD, two different medications for (embarrassingly) chronic IBD, a statin, Prednisone and Imuran for AIH.  Over the past week I completely ditched the statin, and I ditched the Imuran shortly after weaning off Prednisone.

Yes, I'm at risk for a flare up of AIH by stopping the Imuran.  I don't care.  QUALITY of life is far more important to me than how long I live.  It's a weird thing to have to face that reality, but.. there's a chance the AIH may not flare again for a year or two.  We'll see.

So where I am, briefly because I feel horrible and am weak, is in hormone hell.  After taking the Prednisone for 3 months that has likely suppressed my adrenals, which affect other hormones...

Okay... sorry, but my arms are aching badly just from typing.

Sheesh.  More later.. I hope.

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

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

FAST FORWARD...

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

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

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

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

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

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

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

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

Out of My Hands.

This isn't the first time someone has sought to control me.  One big difference with the previous experience with a control freak is that, this time, it's not as much abusive as damaging in more insidious ways.  While I strive for better health, reaching for remission of this AIH, striving to lift myself above the miserable effects of illness and its treatments, I find this mountain I have to climb isn't of my own making, and I wonder often... how the hell did I get here?

Point blank--when someone is dealing with health issues that REQUIRE certain dietary changes you just don't go against better judgment, advice, and information.  With everything I'm dealing with, with my BP skyrocketing into stage 4 hypertension (brought about by Prednisone, I'm told), you don't hand that person a bag of salty chips and walk away.  This is basically what T is doing.

How do you "Forget" something so important?  The deep-seated indifference has become a danger to my health now, and given that I can't even so much as walk across a parking lot, much less through a grocery store, I'm completely at T's mercy here.  I can't walk, stand, or do anything without excruciating pain in my back---something they've not gotten to the bottom of.  All we know so far, due to an MRI, is that it's NOT spina-related.  AI or what, then?  Doesn't matter at this point.  What matters is that I do the things I'm supposed to do to get myself well, healed, and healthy again.  And the one person who has most of the control has chosen to disregard even the doctor's advice.  WTH??

Bringing home everything I'm not supposed to eat.  Salt, sugar, junk, processed foods, and deciding that a piece of meat for dinner is somehow healthy... I simply don't understand.  I have to eat more vegetables and fruit, yet I can't stand at a counter long enough to make salad.  Ugh.  It's exhausting even talking about it at this point because I'm weak and having trouble thinking.  Where is this going to leave me in the end?  Destroying my health one meal at a time is what's happening now, and I have no idea what to do about it.

I've been here before, though it was much much worse.  Getting 'sick,' even with the cold or flu, wasn't allowed.  And if I DID get sick, or if something was making me less-than healthy or energetic, I was treated like garbage and made to feel horrible for 'daring' to get sick to begin with.  Back then, just a few short years ago, I had no idea I was dealing with THREE heart arrhythmias AND an autoimmune disease that was trying to destroy my liver.  I didn't have health insurance, and the clinic I went to wasn't aggressive with testing for most things.  All I knew is that I didn't feel well or was very sick and tired and hurting a lot of the time, something that my ex wasn't on board with.

You find out quickly who cares for you when you become sick.  Trust me on this.

This time around I'm with someone who emphatically claims to love me, care for me, and tells me I'm the most important person in his life.  He volunteers this information---I don't ask for it.  My last relationship taught me to not trust people, anyone in fact.  Maybe one day I'll get past that.  Maybe not.  I have no idea.  So when T tells me he loves me then sets out to undermine my attempts at healing and obtaining better health... it makes me not trust him, or his motives.  Echoes of the recent past have come back to haunt me, laying waste to so much I've strived to overcome.

I guess I have to accept the fact that in many regards this whole thing is out of my hands.  As long as I'm too sick, too weak, and too painful (lower back) to fend for myself 100%... I'm vulnerable and at the mercy of another.  And for the second time in my life the people who I'm at the mercy of don't really have my best interests at heart.  Well, T does... but fails to remember what's needed and necessary for me to recover.  I really don't know how to take that.

I'm heading to the other room here in a few minutes, my retreat, my decompression chamber.  The day is somewhat overcast, which will make rest and relaxation a bit easier.  There's something soothing in cloudy days.  While I need and want and love those sunny days, the clouds are still welcomed from time to time.

"I Forgot"

I hear that phrase a lot these days.  What does it mean, exactly, I'm not sure; but I know how it feels.  Having to rely on someone for ANY reason requires trust, and I mean absolute trust.  Having to rely on someone who's betrayed that trust on a daily basis is a hell I wouldn't wish on a single soul.

I absolutely MUST get better, well, healthy.

It's not like I haven't been here before.  Being sick isn't fun for anyone, and being sick in the presence of someone who lacks compassion, or who FAKES compassion, is stressful, uncomfortable, and more than just a little sad.  I have to say I'm surprised at how many people lack even the minimal amount of compassion required to be 'human.'  Is this really the norm now?  I have to make myself believe it's not the norm, because it it is then human beings are in serious, serious trouble.

There seems to be a limited coffer in which compassion comes in only specific quantities--at least in some people.  And when dipping into the reserve almost appears as a painful event for narcissists.  There are rules as well that must be followed lest you end up on the wrong side of favor with those types.  Timing, whether or not it's convenient (for one to be sick), how long the illness will take to resolve, and if none of the criteria is met then the faux compassion is quickly discarded and the true feelings of resentment and irritation is revealed. Yes, it's been there all along, but that person, that narcissist has grown weary of caring for you.

It's heartbreaking to feel that kind of compassionless ire radiating from someone you love, someone you THOUGHT or THINKS loves you.  It's the worst kind of betrayal, because we all long for unconditional love; something a narcissist is incapable of.  They can play the part, but the script changes dramatically when it comes to the test of time, and it does so every single time.  As for the threshold of said narcissist's limit for compassion, care, love, and selflessness depends on the individual and how much the narcissist is "paid" for their pseudo-love and false devotion.

For me, right now in my current situation, it's a matter of indifference and lack of action that's the real problem.  Half-assing his way through just about everything (except his own personal needs) is a way of life for him.  This was also the case with a past relationship of mine in which half-assing was more like an art form, a 'skill' in which the narcissist patted himself on the back for having such prowess.  Congratulating himself for a lack of feeling, caring, compassion, empathy... while blaming me for his lack of caring.

As things currently stand it's a matter of way too many "I forgot" statements that are more like fingernails dragging down a chalkboard than anything remotely comforting.  Yes, we all forget, some of us forget a lot of things.  But when it comes to the really important matters forgetting isn't well-accepted.

The important matters, while I won't go into details, are serious ones that impact my quality of life and health.  Forgetting isn't even an option to most normal, caring individuals, but in T's case... it's a way of life, something he does, and something he doesn't feel important enough to address.. though he emphatically says so.  I don't buy it, and I don't because you can't put all forgetfulness on a level playing field with every single situation and circumstance.  Forgetting to run a dishwasher, for example, isn't on the same level of importance as forgetting putting the wrong medication in the wrong place when it can risk the person's life.

If there is any compassion inside, any at all, it comes into play without having to invoke it, no matter what.

This is more of a rant than anything.  I'm both disheartened and disappointed at T's behavior.  I have no interest whatsoever in trying to make him understand.  I have far too many other things to focus on, including (but not limited to) new issues that I have to see the doctor for tomorrow morning.  Enough is enough, and I've had enough.  My life has changed drastically, and I'm trying to get it back on track, get healthy, and stress isn't something I need right now.  In fact, on prednisone.. stress is to be avoided at all costs.  Many days this means disappearing into my room/Girl Cave in order to stretch out, listen to music, and shut the entire world away....

..I've had to resort to that withdrawal far too many times these days...

Deleted Post....

Okay, as you long-time readers/friends know, I often delete posts.  The last one is a bit too sensitive, so I decided to delete it until I learn more.  Yes, it's health-related, but I don't know anything about what it actually MEANS right now.  Best thing, imho, is to just let it be until I have a better understanding about what I'm dealing with.

If you read the entry before I deleted it, then you know what I'm talking about.  Given that, once I learn more I'll update.

Sheesh.

I really need a nap.  Seriously.  Life just has to get easier than this crazy rollercoaster I'm on at the moment.

Do You Hear Me?

One common theme you guys see here is about 'listening,' you know.. simply NOT tuning someone out when they're talking to you.  Not to say as human beings we can't or aren't ever distracted, or we forget, or whatever the case, because that can and does happen.  What I'm talking about is the chronic habit of just not listening when someone talks.  It's the epitome of rude, of not caring, and shows a blatant absence of empathy and compassion.  This is NOT a good thing, folks.

As more is uncovered with my failing health, as things become more complicated as to the treatments, as my body revolts by making even simple tasks nearly impossible, I find my tolerance for being tuned out and/or not taken seriously has pretty much vanished.  I've hung in there for over a year dealing with this, and I'm just not on board with it anymore.  But you guys know this by now, I'm sure.

One more night of repeating myself, asking questions where the answer was already given, and finding myself in the middle of a energy-draining diatribe where T argues the argument and tries to blame everything on me.  I didn't say it right, didn't speak loud enough, said it at the wrong time, or just wasn't clear enough.  I'm calling BS on all of that, because I can't be anything other than perfectly clear these days.  I'm sick and weak and painful, which doesn't leave me a lot of energy to be creatively-difficult.  Hell no.. I HAVE to cut to the chase, because I don't have enough strength or energy to do anything else.

Why do I bother?  I've been here before and know how it plays out.  Men love to believe they're right, the only ones with answers.  No offense to any guys reading this who aren't cut from the typical cloth.  I know you exist and appreciate you all.  What I'm speaking of here are men who decidedly "Take the path of least resistance" and spin things in their favor.  Hey, if it works for you, congratulations.  But my guess is.. it absolutely doesn't.

Can women be like this?  Sure they can!  But for the sake of argument here, and from my personal standpoint and experience, I've dealt with MEN who do this, which is why that's my focus.

I can't make someone hear me, listen to me, respond to me, or respond or care or give a crap from any standpoint or view.  I can ask.  I can point out the obvious, IF that person is open and not a total asshole.  But I can't make anyone change.  What happens, by default, is that I end up changing the way I communicate with such people, and that usually means... I stop communicating.  It's inevitable, and it's happened before.

Whether the approach is to be a rip-roaring ass or indifferent zombie, the result on MY end is the same.  I don't have any interest in sharing thoughts, dreams, life, whatever with someone who is a jerk in response or barely hears what I'm saying, much less remembers what I'm saying.  Why on earth would I waste so much effort on people who doesn't deserve it?  Rhetorical question, of course.

I'd like to finish my thoughts on this, but unfortunately the jump in dosage of the Azathioprine is kicking my ass.  I will have to finish this another time...

Thanks for your patience, guys....

Labs Post-Prednisone & Azathioprine

So looks like another medication is being added to the list--Lasix, a water pill.  This is needed to reduce the amount of EXCESSIVE water retention caused by the Prednisone.  I'm really glad to know about this addition, though it's going to be rough heading to the bathroom constantly.  Oh... but I'm SO very glad to do so!  You've NO idea.  But there is other news as well...

Liver enzymes: At the start my liver enzymes (which is NOT a liver function test) were elevated some 7-8 times that of normal, depending on which end of normal you do the math from.  Considered by the doctors I saw these were considered "significantly elevated."  Some people have way more elevation than that, but apparently research says that the actual numbers don't always indicate prognosis or how significant the disease is at the time of diagnosis.  But today, thankfully, I'm told that the one enzyme that is still elevated is only elevated by a little now and "Much better than where it was before." YAY!!  That's good news!

While I have to wait to get the labs actually in my hand to SEE them, I was also told that some tests came back showing mild muscle inflammation.  Not sure which test that was, but it doesn't really surprise me.  I have labs rechecked next Monday also in order to make sure the Azathioprine is helping, and not hurting things.

Good news, right!? :D  And hey, as long as those numbers go down and into the normal range, I can deal with some side effects from Azathioprine.  I mean, as we go along this journey the prednisone will be tapered... and THAT is DEFINITELY a good thing!  Not treating AIH means possible progression to cirrhosis.  Only thing statistics say about this that I don't like much is that 80% of people who go OFF medication to control AIH have a flare up within 1-2 years, and it often comes with the nasty addition of fibrosis or cirrhosis.  Yeah, I'm okay with medication inconveniences over death, thank you. ;)

So what's the deal with muscle inflammation?  I've no idea.  Guess that may be addressed next... we'll see.

How's that for some good news? :D

Uphill Means Heading to the Top

I'm not going to say today is a good day, and I'm not accepting the idea from anyone that I'm "just being negative" by saying so.  I'm a realist, and I don't subscribe to the idea that sticking my head in the sand or ignoring problems is somehow going to help me.  THAT approach has NEVER worked.  Maybe for some it will for a while, but what I've noticed about those who do subscribe to that mindset is that their very behavior says... "deep down inside I'm just not happy."

Deep down inside is where it counts.  You can put on a pretty face to the world, smile and laugh and be funny and the center of attention.  But does that mean you're happy, or that you're simply faking it in hopes that you make it?  I won't sit here and speak for anyone, but observations from my past tells me that the latter is most likely true for most people who believe they can pretend to be happy until it 'sticks.'  Whatever.  As for me, I want genuine happiness, the lasting kind that can and will get you through tough times.  Because you know what?  There WILL be tough times.  You know it, and I know it.

Arm yourself with reality.

On the flip side of those who bury the bad too deep to see or feel or acknowledge (much less fix) there's the ones who really are quite oblivious to what's going on around them.  In that state they're able to be happy because they're "blissfully unaware" of any peril.  Until, that is, they find themselves sliding off the cliff, which does eventually happen when you're not paying attention.

T is that second type.  He's blissfully unaware, happily unaware, of all the things that change everything in his world.  Only he doesn't see the changes and is often surprised when he catches glimpses of them.  While he fails to recognize what it is he's facing when this happens, he's lost to my words when I try to explain that this was ultimately foretold to him.. that he was warned that he's unplugged and indifferent and that, eventually, it will catch up to him in ways he absolutely won't like.

It makes me tired defending myself.  It wears me down having to explain myself, which I don't have to do that often with T at all because he's really just kind of 'not there' for me.  He's not mean, as I've said in the past.  He's just incredibly indifferent and blind.  And oh trust me, there are far worse things he could be.  Even so, it wears me down to the bone always playing chase---chasing him to point out his surroundings, so to speak.

It's an uphill battle for me.  But at least 'uphill' means you're climbing to the top of the mountain, a great place to see EVERYTHING.

I'm dealing with intense nausea and back pain today, so I'm not in the best mood.  I'm not angry or anything.  I simply just don't feel well at all and can see my day stretching ahead of me with me stretched out on the sofa or bed and wishing with all I am that this nausea passes.  Hating it, I'm telling you.  Hating it with all I am.

But hey.. I'm still breathing, right?

And today... I can honestly say that I really could care less if T is plugged in at all.  He's working from home today, which he can do on occasion, but I don't have to deal with him really because he's in his office.  Too sick to care what's going on around me at this time.

Sick and tired of being sick and tired and living amongst a world of indifference.

PART I: Never Mind. Seriously. Just Never Mind.

Where the hell are my headphones?  I need to retreat to a safe place!

Same shit, different day, new perspective on an old and growling beast.  I don't run from the things I have to address, but I also don't face them until I have my crap together either.  So when I find myself continuing to observe T's indifference, the disconnection despite his denial, I begin visualizing a much better life far from 'here.'  I wouldn't be the first woman to have the need from being freed from such damaging bonds.  Crap, but I feel like a caged animal at times.

He doesn't listen, which means I have to repeat 99% of anything and everything I say.  And what he hears, or says he hears, he remembers very little of, even of the most critical and important of things. No, he doesn't have a 'memory' problem--he has a SELECTIVE MEMORY problem.  Like many men, he's afflicted, and he will find himself on the outside FAST.  Well, to be honest, he's pretty much there already and is too damn self-centered and egocentric to notice. smh.  I almost feel sorry for him.

Almost.

So what happens when Mr. Man tunes out?  Well, the beginning part of the process is pretty self-evident, isn't it?  When a woman doesn't feel 'heard' she tends to speak "louder," though that doesn't mean volume-wise.  Ask to be heard.  Demand to be heard.  And then... eventually... doesn't care if 'he' hears or not because, by then, most likely someone else has come along who really is listening.  And before you 'go there' and think we're talking an affair, let me say THIS:  It is a human need to want to be heard, for someone to show they give a shit, and just because you find someone who listens, gives a shit... doesn't mean you're sleeping with them.

When you've wasted time on someone who doesn't bother to listen, hear, or acknowledge.. OR remember anything you say, it's only natural to stop talking to that person.  Funny thing about that, too, because it's always when you've given up, stopped talking, stopped sharing, and begin disconnecting that the other party decides they suddenly notice.  Doesn't usually fix the behavior, and it usually brings on board even more problems because that person suddenly feels 'needy' in the absence of what they once had.

On the flip-side of this is when you're dealing with a narcissist, the one who is constantly needy and making demands, unreasonable demands, while accusing you of not 'being there.'  Oh God, but that is an insane situation when it happens.  Lucky for me, T isn't much of a narcissist, and not a malignant one as I can see, but he's so self-centered that he's pretty incapable of being there for another person.  No joke.  Not kidding in the least.  He's clueless.

In my situation, especially at this point in treatment for the AIH, it would be nice to have someone ACTUALLY present.  Not sort of present, going through the motions of being present, but ACTUALLY PRESENT.  "Wish in one hand..." as my mom used to say.

On my own.  Okay.  Well, if you're not going to be there for me, then get out of my way!  Yes, I've told him this, point-blank.  He just decides that he IS there for me, though there's nothing really in his behavior that makes him 'there' for me.  I can't reconcile this at all.  Neither can he.  He can't explain, then says he 'understands,' which are simply mere words to me.  It's not like we live in separate households and have completely separated lives.  He's here, but he's NOT here.

It would be different, understandable if we lived in separate places entirely.  When you don't live with someone you have to allow them room and time to live their own life, to do what they need to do with regards to just everyday living.  That's just respectful.  But when you're in the same household and you're not there... that's an entirely different scenario altogether because you're supposed to be working together for at least some common goals, there to help one another, etc.

Give me some damn space!  Let me BREATHE, for crying out loud!  Indifference can be quite suffocating.  Has anyone ever noticed this?  Because I certainly have.  It's a lot like being trapped.  It really is.  Nothing looms larger in any room than an absent human being.  Yes, you can quote me on that.  It's how I feel, how I see it, and how I experience it.  "It" being living with someone who is completely unplugged and self-centered.  I feel like I'm suffocating...

There are times I need to talk, REALLY need to talk.  I'm still reeling from this recent diagnosis, and I'm confused and bewildered as to what to do, how to deal with the disease itself, the harsh and necessary treatment protocols, the uncertainty of the future, and I've no one to talk to about this.

Autoimmune Hepatitis is a RARE disease, so there's not a ton of people out there talking about it, sharing their stories, and so on.  There's not a ton of information on it, and even less as how to cope with it.  And here's the clincher... T has NO clue what this disease is about, how it can affect me over the course of my life, prognosis indicators... NOTHING at all.  Why?  Because he's not BOTHERED to learn anything about it.  He's absolutely CLUELESS about AIH.

What am I to think of that?.... heading to PART II to expound... and oh trust me, I feel a vent coming on...

Looking for that Anchor

I'm not completely unaware of my surroundings.  Everything around me lacks technicolor, true, but I'm still aware of what's here, and what's not here.  Having the awareness only changes how I approach any given task, every thought, every choice I have to make day to day.  Once I forego the usual self-talk and begin to listen to the silence the scenery changes a little.  But just a little.

Indifference continues to be the backdrop to life with T.  In a strange way, I've come about to a place where I'm more than okay with this.  He isn't going anywhere.  He's happy in his strange bliss.  He panics if I try to talk to him about how things really are, how I feel, what he's doing and how it affects my life in significant ways, and not good ways.  He panics in the sense that he isn't unhappy.  Weird, to me, how one person can be so unhappy while the other is... well, happy.  How does that even work?

Okay.  So I'm not going anywhere.  I do have times where I would give anything to be free of all of this.  And then there are times I'm happy.  Yes, yes.. it's not like I'm miserable 24/7 or anything.  Far from it.  I deal mostly with the AIH symptoms, the medication symptoms and withdrawal symptoms and all that involves.  But that's not what I'm talking about here.

I'm adrift and looking for an anchor to secure me in place.  I don't have my bearings right now.

So with 5% power left on this machine I'm leaving the conversation for another shot at it later, maybe when my thoughts are a little more cohesive.

....more coffee.  Yes, that's what I need right now.  More coffee....

I'll be back later, and hopefully I will make more sense than I have now. smh.

Overcast

So how's the weather?  Yes, at times this is probably the safest question to ask me.  When I don't have answers for myself, when the question concerns something that is beyond ridiculously difficult, I'm not always willing to dive in face-first and have a happy little discussion about it.  At the moment, if anyone asks, my standard response is akin to a shrug, really.  Honesty, because I have nothing to add to the discussion.  Trust me, I'm doing you a favor when I do this.

Don't push for answers--please; I most likely don't have any.  It's not that I'm at a loss for words, but who the hell wants to listen to me prattle on in contemplation over something I've yet to wrap my head around much less have answers for?  Yeah... you're reading this entry and feeling it now, aren't you?  Yeah.  I won't apologize for being sick or its effects on me, but I will say to anyone who's felt or sensed my withdrawal of late--this should resolve in time, and thanks for hanging in there.

So today's weather---overcast.  And for some reason I find that immensely soothing in ways I cannot possibly explain.

It's all self-explanatory, really...

You have about 2 seconds before you get throat-punched

Just kidding.  But really, today is "Not mess with me" day, just in case anyone needs to know.  Prednisone irritability in full-swing, and honestly... the indifference and selfishness is grating on my nerves like metal nails clawing down a chalkboard.  OMG, someone kill me now!

On any other given day, under normal circumstances, I may be able to grit my teeth and work up some tolerance for the indifference and selfishness.  Oh, but not today.  And I'm freaking stuck here in the middle of it ALL... DAMN... DAY... LONG.  God, really, how am I going to handle this entire day without completely losing it?

I miss home.  I miss Mobile, AL.  I miss my life.  I miss ME.  I miss freedom, peace, tranquility, and the ability to breathe in my own surroundings.  O. M. G. but I would give my left leg for that life again... free from disrespect, indifference, and a general foundation of being treated like the maid every single given moment.

I'm on edge today.  Can you tell?

All I want is to breathe easy--figuratively speaking.  I can't relax.  Has anyone ever noticed just how much anxiety comes with being around someone all of the time who is completely unplugged, out of it, really rather... not there?  *sigh*

Please, God.  Give me my life back.  Give me my health back soon so I can get the hell out of here once and for all.  I'm not going to make it in this environment without spending the remainder of my life sick, anxious, depressed, and longing for a REAL life, a full life.

I suppose this is the first time I've vented to this extent.  I don't care at the moment.  ALL the filters have slipped out of place and the raw feelings are flooding through, unencumbered.  Maybe it will help.  Hope so.  REALLY hope so.

*sigh*

Dammit.

Fun Stuff and 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.

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

Crossing over entries for the sake of catching everyone up at once.  When I've finally caught up to speed with what's happening in my life right now, the entries should return to focus-specific talk... Thanks for bearing with me, you guys.

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.

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

Treatment:

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

Prognosis:

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

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

Remission:

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

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

The journey begins.

Still fighting to find my bearings in it all

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.

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.