Chronic Epic Failures.

As I reach for health and healing, returning to MY life, it's not without obstacles.  If you've been reading here for a while, and reading my other blogs, this has become glaringly apparent.  So why am I STILL struggling with this?  Why is it I'm still stuck in limbo and unable to help myself?  And WHY are the obstacles STILL here?  I have to say... there's no easy way to answer those questions.

Ever hear of situations where someone is trying to lose weight, or start an exercise program (or both) and they're met with resistance from someone very close to them or.. someone living with them?  Yeah.  Well.  That's where I am and where I've been.  And now that prednisone has put weight on me I have to struggle to take care of that, because dieting doesn't quite cut it.  There's a lot of different physical mechanisms in place that thwart that.  Not that you can't lose, but it takes a lot more diligence.

I've spoken to T so many times now about not bringing home junk food and garbage food.  The junk is easy to avoid, but T's favorite thing in the world is frozen food.  Ugh.  Nasty stuff.  Okay on occasion, but for me.. it's wrecking my health beyond reason.  Too much sodium and sugar, too many processed carbs, not nearly enough veggies.  Why even bother buying that crap?

Each weekend T insists on buying the groceries.  In my current state I can't really go anywhere anyway, so I'm at his mercy.  How is it he can easily forget the stern warnings from my doctors about eating as clean as possible... is beyond me.  And not a single discussion, and there've been MANY, seems to get it through his thick skull.  smh.

So he chooses 'easy and cheap' despite the warnings, the risks, and the damage to my already compromised health.

I was told yesterday that my triglycerides are up AGAIN, and now my ferritin is elevated above normal.  NEITHER of those things are good!  *sigh*  WTH am I supposed to do?

I'm still searching for answers to this because, honestly, this is a very dangerous road to be on for me.

Dammit.

The Death of a Diet.

Completely convinced that I'm turning into a human sponge, today marks the first of my accepting the fact that any hopes of dieting off this prednisone weight gain and swelling is just not going to happen until I'm off the stuff.  It's become majorly apparent that I'm sensitive to it (as I am to all medications) and that I'm going to be living in the throes of prednisone hell for some time to come.  But can I handle it?

I have a new appointment to see my liver specialist tomorrow.  I had to make a call to the after hours line due to some pretty serious swelling in my face that has gotten too close to my eyes.  Not sure what it is, but I know it's alarming and NOT in the least comfortable.  Could be from being ON prednisone, could be from coming off prednisone (possibly coming off too fast), or it could be from another medication or from a new problem that's rearing its ugly head.  I've NO idea as the variables involved are came on board about the same time.

How does this affect dieting, weight loss, etc?  Well the answer is right there in my statement; prednisone.  It's a monster that's going to win every fight, as it's actually designed to do.

What the above means is basically I have to practice acceptance and patience and allow myself to not stress about what's happening, because the reality is: it's a battle that can only be won by surrendering.

If it's not one thing....

....It's another.  Such is life, right?  Enter, Prednison---and gone are the days when 'dieting' takes off the pounds and inches.  Now aint that some sh*t?  Most people have to diet while on Prednisone just to maintain weight or slow the gains.  And there is absolutely NOTHING you can do about the chubby face, etc.  Once Pred is stopped and the body resumes normal function of cortisol.. things will go back to normal.  In the meantime, I feel like freaking Violet!  Ugh!

The pic on the left is how I USUALLY look, but I can hardly recognize myself at the moment due to the chipmunk cheeks and overall massive bloating.  *sigh* I honestly feel like Violet... *sigh*

Will I get back to that same level of health?  I wish I knew.  The Prednisone bloat/weight will go away once I'm off the Pred, and I'm hoping everything will be back where it was prior.  Thing is, that photo of me was taken even while I was unknowingly in the throes of the AIH.  It's all in the eyes, too... I look tired.  But oh boy, right now my eyes are ridiculously swollen (like the rest of me), and my eyes are sunken with very dark circles.  For all practical purposes---I look like a sick person.

Will I ever look or feel well?  This is the burning question I have day to day, and as much as I set out to overcome the 24/7 hunger, eat ONLY the right things, I end up giving in at some point in the day.  It's relentless, but I can tell it's already getting better now that I'm down to 15mg/day of the Pred.

As I'm tapering, I'm wondering about how drastically my diet is going to change given the circumstances OUTSIDE the Autoimmune Hepatitis.  Low salt, low to no sugar, low fat, and possibly having to give up all the things that irritate the stomach and intestines, such as wheat, dairy (including eggs), and significantly reducing the amount of fruit I eat.  I've not been eating much fruit at all, though, which I do wonder about.  I love fruit but have lost my taste for it, and many other things, over the past several months.  Part of this, I think, is due to the medications altering my sense of taste, but I also believe that there's more to it as well.  Either way, I wonder what I'll be left with to eat once problematic foods are eliminated?

Low protein, low salt, low to no sugar, avoid processed foods when possible.  I just don't know, but it's not going to be easy to do this.

Leaning on the idea that exercise is supposed to be good for me, KNOWING this is the case for people, all the questions regarding the possibility of Myositis being one of the problems are still there and unanswered.  I've yet to get on that exercise bike because I know that if it is myositis and it's in an active stage, exercising is a bad idea because muscle wasting/damage occurs when the disease is active.  You just can't 'damage' muscles if they're already be damaged, because they won't repair.  Exercise creates muscle damage, and it's within the process of repair that they're made stronger.  This isn't the case with Myositis.  Neato, huh?  Yeah, not so much.

I'm tired of the IF situations.  Oh you've NO idea.  And feeling how weak my legs and arms are even ON Prednisone sets off the warning alarms inside, cautioning me to hold back until I have the go ahead from my doctor.  Looks like I'm going to have to see another rheumatologist as this is their territory.  I won't go back to "Dr. Mumbles."  Honestly, Dr. Mumbles really should retire.  When you disconnect from your patients and spend less than 5 minutes talking to them, when it's obvious you're pretty much going through the motions to the point where you miss significant findings.. it's time to retire.  It's just time to retire.

Well, it's that time of day again... when my energy begins to crash and my limbs become impossibly weak and tired.

I'm out of here.. for now.

That 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.

Inevitable

What a word, huh?  Stating my case for better health is a daily routine, one in which I decide when I wake up just how far I'm going to let this AI situation screw with my life.  Oh, I make the decision all right, but the powers that be seem hell-bent on proving me wrong.  Raging against this doesn't work, yet it gives me an outlet to expel the toxic waste of bewilderment.  So be it.

Weight loss, prednisone, diet, eating, choosing, and living with the ultimate consequences provide a messy framework in which I have to live.  This machine controls everything, as many of you know, and we KNOW it controls us because of all the hype with body-image, health, well-being, and the next, best and greatest health craze, fad, or obsession.  You know it's true.  I know it's true.  All of us fall victim.

The good news is that we can choose how we go about reaching for better health.  MY choice is to abstain from meat, and dairy... go vegetarian or vegan.  As it turns out, the autoimmune hepatitis and medication necessary to bring and keep it in remission poses their own health concerns, one of them being low calcium, osteoporosis (to name just one).  I can't skip the dairy, because supplements DO NOT WORK in this case.  I eat dairy, I take supplements for calcium and vitamin D... and yet my calcium is testing below normal.  Now, this could possibly (hopefully) change as I'm weaned off the prednisone.  But only time will tell.  In the meantime, knowing calcium actually helps a person LOSE weight, I know that I'm still fighting an uphill battle.  Prednisone puts on weight NO MATTER WHAT YOU DO, lowers calcium in most cases, causes extreme water retention, lack of sleep/insomnia (which is vital to weight loss)... and so so much more.

At least I'm down another 10mg/day, so that's good news.  The Azathioprine is up to 150mg, which is supposed to help with symptoms from prednisone tapering, so there's that.  It's just a damn ugly process, is what it is, and the effects from using high dose/long term prednisone could last up to 2 years.  These realities become part of my journey to better health.

...Then there's the myositis situation.  WHAT am I to do with that?  Nothing, for now.  It's attempting to kick my ass just the same, though.

Ugh.

...I really wish T would finish putting the exercise bike together.  *sigh*

How the hell am I going to survive all this?.....

Almond Milk. Okay'den.

Really... nix the dairy, get some almond or coconut milk, and do your colon a favor.  M'kay?  Well, that's what I've done anyway.  I guess I just got tired of looking at the blender and bag of Shakeology and seeing the horrors to come if I drank any of it!  Thing is, it's NOT the Shakeology at all.  My problem, apparently, is dairy in some forms, so replacing the dairy with the almond milk was a smart choice on my part.  Yeah, I can boast about that just a little bit.  I mean, I made a smart step in the right direction.

I guess when determining how best to proceed in fighting off the effects of high-dose, long-term prednisone is to begin with baby steps.  I know some of you are the jump-right-in type, and I'm usually that way myself.  But when it comes to having something in your system that's going to ultimately wreak havoc on you if you make the wrong choice, you really have to make those choices carefully and with MUCH thought and research, and... planning.  You have to plan for the unexpected.  Seriously.

My taste buds are so whacked out nothing tastes right at the moment.  The cruelty factor here is that if something is SWEET.. I can taste it more than anything else.  My nemesis, sugar, is out to get me. Dammit!  And salt, is something that is BARELY detectable now.  Coffee doesn't even taste right... though I'm not about to say it tastes bad, because it doesn't.  So this altered sense of taste makes the dieting and eating right a lot more complicated than it would otherwise be under normal conditions.  What a freaking mess.

So back to that almond milk thing....

As it turns out, almond milk actually doesn't taste much different than dairy.  Even with an altered sense of taste I can see this.  I've had almond milk before, btw, and I know it doesn't really taste all that different.  At least not to me.  So if you're looking for a dairy alternative, try almond milk first.  I also love coconut milk.. yes, milk.  I also love the water, but that's not suitable for shakes.

I'll be perfectly honest here--all these choices, good and bad, aren't helping me lose weight because of the prednisone on board.  Doesn't mean YOUR experience won't prove vastly different.  I'm just saying that if you're having to take this stuff just be informed and prepared for your body to not respond the way it normally would.  If you go into dieting, eating better, etc. with that in mind.. then you won't likely be so disappointed in the scale numbers.  It's going to be okay.  Prednisone's side effects are temporary, and if you're taking prednisone you are most likely for a good reason... I hope.

So two thumbs up for almond milk, which is naturally not high in calories btw...

Here's to health, despite that damnable prednisone!

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 focus on ME."

Crossing entries on my blogs are simply until I catch everyone up to speed with what's currently going on in my life.  Once that's done the entries should be focus-specific to the blog... Thanks for hanging in there with me, folks.

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

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.

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.

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.

PART II: You can't treat me this way

I no longer care if I'm heard.  My resolve is strong enough that I can take things from here.  My guess is that many guys shrug things off and feel justified in their indifference, and I am more than okay with that right now.  I'm in a place that indifference, silence, and flipping the switch to autopilot just gives me more time to focus on what I need, healing, happiness and health.

Give me enough space and I will build a universe!  And yes, L, you may quote me on that. ;)

Even when I resort to the introvert side of me, or if I'm venting in order to sort through the muddle, I'm a LOT stronger than you think.  Don't underestimate me, because others have and discovered quickly that I don't require their help, blessings, or support in such matters.  If it comes down to the wire... I've got this!

Yes, it would be nice to have people close to me who are supportive.  But I've long since learned that it's not an actual requirement in order to succeed at my goals.  of course, there is a lot that's to be said about having a good support network when you're going through difficulties.  Still, if that network and support isn't there, I have to resort to my own devices.

This is where I am right now.

....Will continue this soon...

Reminder: My other blogs

A couple of you have sent me messages on FaceBook regarding a few issues I promised to talk about or update about.  I have.  You may have just missed where I spoke about them.  This was the problem I mentioned previously about keeping all 3 of my blogs.  But you guys begged me to keep them all, so I did. :)

So as a reminder, and to either clear up confusion or create more, here are the links to my other blogs.  You can always find them in the menu section (side bar) under Alter Ego.  Also, in case you've forgotten, mostly the separate blogs are for focus, so that all topics don't all end up getting blended together in one place.

Hope this helps...

Where Fireflies Dream

http://gothicwell.blogspot.com

All Things Ephemeral

http://autumnwhisperstome.blogspot.com

Boo’s Juicy Bits

http://boosjuicybits.blogspot.com

Each blog is designed for a specific purpose and focus, true, but all of them overlap in many ways.  I may end up burning myself out posting on one, and may not get a chance to post an entry on the others the same day, or at the same time.  There will be times, in other words, where it may appear as if I've not made an entry...when I actually have but on a different blog.

A brief explanation of the blogs may help a little bit.  Just remember that even if a topic/blog may not interest you, I may have spilled everything there and not posted elsewhere.

Where Fireflies Dream was intended to be a place for dreams, wishes, hopes, plans, goals, etc.  But it's evolved over time into something bigger than that.  That's about all I can do to explain this blog.  There are days when the focus is implied, and days when I'm speaking in contrast to what the focus actually is.

All Things Ephemeral is the original blog, the one I built and posted on about anything and everything you could possibly imagine.  I used to give quite a bit of details, which often meant deleting entries after a time that said too much.  Hence the name "All Things Ephemeral."  Now, I've not recently unloaded in detail there, so most of the entries remain intact.

NOTE:  It must be said that when I do post in great detail there the post may not remain for long.  So if you make it a habit of reading posts in this blog you probably won't miss anything.  If you wait too long.. the entry may be deleted.

Boo's Juicy Bits:  Now this blog is mainly about health and diet in the context of flirtatious fun.  With health issues wreaking havoc, however, it's changed the entries for the most part.  But as things change and I get on top of things... it will return to its original and flirty content.  I'm not about faking things to entertain, so you guys will know pretty much where I am by what you read there.

Again, ALL of these blogs intersect in some way.  They all have a purpose, to which I've tried to keep true on, but they still cross over one another in ways.

Okay.  Enough of this.  Again, you can find the links to the Alter Ego blogs in the bar to the side of each blog.

Well... this liquid diet is kicking my ass today, so I'm off here for now.

*waves*

Seclusion

Never really a good idea.  Just saying.

I've had a bad time of writing here lately, always so unsure of what I'm doing or where I'm going.  Let's face it--I'm stuck.  Not for a lack of trying, but mostly for a lack of motivation and guidance.  I can't even begin to tell you how tough it is to be mostly isolated while trying to reach out.

WTH is that all about anyway?

My sense of direction right now is also f*cked up.  Too much is unknown for me to pick a direction, a focus, anything that would remotely help me to get up again.  Yes, the health issue is greatly responsible for what I have to deal with from day to day, and not having definitive answers makes things even worse.  Freaking limbo.  Damn.

Well, I guess I do have ONE direction/focus---health.  It will have to do for now.  But honestly, I'm going to plan for a vacation...at the least, a short road trip to somewhere where I can take in the scenery and renew my soul.

Yeah.  Most definitely.

Crafty little devils

It's been an odd day of thinking, reflection, research and nostalgia.  I haven't a clue on where things will go once I get my liver biopsy.  Oh, yeah.. my Dr. decided we should go ahead and do one.  It's the 'gold standard' in diagnosing and staging NASH, and to also see if fibrosis, etc. is present.  I'm not expecting them to find fibrosis, but the biopsy is the only way to know what's what.  It's a risky procedure and one I'm NOT looking forward to.. which those of you already know if you've read the entries in Where Fireflies Dream.  Still, my entire diet will need to change, and I am glad I eat a plant-based diet because that's going to be my saving grace.  However, I will have to limit fruit and all forms of fructose.  C'est la vie.  Whatever it takes.

Things have to change.  Significantly.

Sorry this is short, but I spent all of my energy posting on Where Fireflies Dream and have so little left of me at this point.   No worries, because I intend on getting back here to talk about things later.  No promises.  But I do intend to...

Fell off the grid for a bit, didn't I?

It happens to the best of us.  Plus there's still a lot of house renovations going on.  And yeah, that was supposed to be finished, but you know how it is.  One thing is shiny and new, and the thing next to it looks like crap. lol  Yeah.  Really.

Juicy bits---plant-based diet works well for me, but DAMN it's hard to find stuff they don't add milk or eggs to!  Didn't eat for most of the day the other day, so yeah... was feeling a little woozy.  Stopped by a gas station to find something to snack on.  Found a bag of chips--no, NOT the best choice but better than most--dill flavor.  DILL.  Whipped out my trusty app, "Is it Vegan?" and scanned it.  NOPE.  NOT vegan!  Whey in the ingredients.  I mean, really?  Who puts milk products on potato chips?  It wasn't ranch flavor.  It was DILL! lol  Pickles and milk.  eeeeew!

Oh well. lol  I had a good laugh and moved on.

Other health issues are hanging out there and awaiting scrutiny by specialists.

Lung nodule still needs to be evaluated.  I opted for a second opinion due to the fact that the first pulmonary doctor didn't know the difference between 1.1 mm and 1.1 cm.  HUGE difference!  So that appt will come soon.  She did express deep concerns, as did the rheumatologist, with regards to the plethora of lab values that were out of range.  Most of these were associated with the liver.  Long story, that.  I see that specialist July 20th.  The symptoms and pain is getting worse, so we'll see if I can hold out that long.

Well, I plan to post a bit more often.  Right now there is SO much I need to say.  But I just can't at the moment.  Much to be done with regards to choosing paint, lighting, etc. to finish the front bath.  And there's the kitchen to be dealt with.

Till tomorrow....