It's Been Rough

I'm not sure how long I can sit at the computer, but I'm giving it a try anyway...

I'm down to 2.5mg of Prednisone per day and am feeling completely beaten to death at this point.  The bloating/edema is still as severe as ever, and I just can't seem to feel right no matter what I do.  My appetite has waned, thankfully, but now nausea has taken place where I did have the dreaded prednisone appetite.  And I'm cold--SO cold.  I honestly don't have any idea what to expect going forward and am barely hanging on.  I'm dead serious about that.

The worst of it is that I'm having issues, big issues, with my muscles not working; they honestly just refuse to do what they're supposed to do.  The weakness and bloat and discomfort are unbearable.  But I'm hanging in there, getting up every morning, pushing through the routines I like in order to maintain some semblance of normalcy in this so-called "Life."  But it doesn't feel like MY life.  Not even a little.

It's only 10:55am and I've been up since about 7:30am.  And I want so badly to crawl back into bed, cover up, get warm... and sleep.  Just... sleep.  I'll allow myself to give into that once I'm done updating my blogs; a goal I set today and intend to fulfill.

Where is normalcy, my life, vitality?  Why I continue to ask that is beyond me.  I mean, I know full well it's just a rhetorical question that has NO answer.  Habit, I guess.

....I'm waning fast here....

5:43 AM

5:43 AM -- This morning I find out if one of the medications I'm on is causing the swelling around my eyes.  Funny thing is that I'm wondering HOW I'm going to manage actually getting through the parking garage, into the hospital (where my specialist's office is), get to his office, and then the entire routine in reverse.  I've never felt so sick in my life.

Autoimmune Hepatitis, for me, should be relatively easy to get under control, and possibly keep under control.  I don't have cirrhosis, so the level of damage to my liver is minimal since the AI was caught early.  That's the good news.  But the case for what the medication(s) can and seem to be doing to me is another matter that has to be dealt with, and like a lot of people I'm only just a little surprised that I'm trying to decide which is worse; the disease or the cure?  I think there's no easy answer to that and the outcome could go either way.  At least for me.

Today I go down another 5mg of prednisone, and I have no idea what to expect.  Thus far, since there's no actual answer as to what's causing the symptoms I have at the moment, I've not even tried to predict what will happen when the dosage is tapered down.  And I'm completely torn now because I REALLY REALLY want OFF this drug.  Prednisone is nothing to mess with.

The depression that comes with taking this stuff doesn't help at all, and I've no coping mechanisms in place to catch me when I fall.  Those feelings of hopelessness, when they come simply just arrive like an unwanted house guest with way too many suitcases.

Finding hope is an everyday task as necessary as getting out of bed and having coffee.  That elusive hope, the thing that provides inspiration in a seemingly grim situation, evades me on most days.  But coffee helps!  And no, I'm absolutely not making jokes about that blessed liquid.  While my miracle vacations in the Bahamas somewhere, hope is the somewhat-retarded cousin who only wants to make demands instead of helping.

In the midst of the confusion, the chaos, the physical misery, I'm left to not sharing any of what I'm going through with anyone--at least face-to-face or on the telephone.  No family to call, no one to talk about this to---except for you guys.  How far into the virtual void does this information echo anyway?

Time to go...

1:42 PM -- Well, two doctor visits and a trip to LabCor was less than ideal.  New prescriptions, more blood work, and the realization that this prednisone is seriously messing with my BP.. which was 192/94 on the second try; the first was higher.  I hate BP meds, which I had to take before my ablation for 3 heart arrhythmias.  Those meds can make a person ridiculously tired--something I already deal with.  But it's just one of those things, I guess.  Also checking to make sure all's well with my kidneys... which I'm sure are fine despite some of the off-kilter values last week.  Maybe just a little dehydrated.

At the moment my entire body is absolutely tired and achy.  I was 5 hours late taking the prednisone dose today because I couldn't eat before heading out. OH well.

Right now I think I'm just rambling on and not really saying anything, so I'll sign off for now.  I'm in need of a nap and my favorite blanket...

Deciphering Dreams is Like Trying to Fold Clothes With Your Mind.

I remember most of my dreams.  Most of the time they really don't strike me as anything important.  But there are times when I wonder WTH my subconscious is doing when I get one of the weirder versions and WTH I'm supposed to do with the message(s)?  Most of the time I don't even bother trying, and I simply allow that strange, haunted feeling to carry me throughout the day.  Basically, I usually let it sort itself out.  Only thing is, last night's dreams (yes, plural) had an odd message, and one I'm not used to hearing.

Now, I have to say I don't believe all the 'dream interpretation' stuff out there.  For the most part what I see is just new age rhetoric nuzzled closely with religion/anti-religion belief systems, and I tend to think that dreams are 'mostly' our subconscious trying to work things out--simple Psychology 101.   Not to say that prophetic dreams don't happen, because I believe they do.  I just happen to believe that's not the case most of the time.  Having said that....

I dreamed of dying.  And not in some bleak, spooky, Stephen King sort of imagery, but rather something that felt practical but softly urgent.  My take is that those dreams had a lot to do with what I learned yesterday when I received copies of my lab results.  While alarming, I've not been given any kind of death sentence or any real cause to panic.  Nothing like that so far.  What I'm taking away from what I learned is that I need to be aware.  I can do that.  But my subconscious did have a field day with it.

Some of my dreams leave me haunted by the way things felt within them, and last night's dreams have done just that.  Okay.  Maybe I'm supposed to feel this way in order to affect some change.  Makes sense to me.

I'm choosing to not overthink the imagery or feelings those dreams of dying invoked, because it's virtually impossible to know exactly what they mean, what their purpose is, or even what I'm supposed to do with the information.  The more I think about it, the more confused and 'off' I feel.

Deciphering your dreams really is a lot like trying to fold clothes with your mind.  You can sit and stare and concentrate on them until your head hurts, but the wrinkles and folds and chaos remains unchanged....

A Deliberate Derailing

It happens when we least want it to.  That sucks, huh?  But I discovered something today about the ole train of thought, and that's knowing when to purposely derail that bitch!  Across my blogs I've tried to focus on what needs to be done with my current health situation, relationship situation, etc., and what I found is that my mind just kept staying on what is currently happening that I can do nothing about.  I mean, it will drive you nuts if you don't have answers for something extremely pressing, like health or relationship issues, and I am not immune to that at all.  Given the level of frustration, I need to do something to completely and totally derail my train of thought, and I could really care less where the wreckage lands at this point.  There will be chaos when that thing jumps the track, but maybe a little chaos is what's needed to force a little organization to the situation.  Right?

Let's go!

Right.  Now did you really think it would happen that easily for me?  It's okay, though.  My main goal is to feel better, feel GOOD, be happy, healthy, and have a mostly-peaceful life in which I can thrive and survive.  I can't even begin to consider wasting precious time on those trivial things that many take for granted.  I won't even go into all of that here.

There's a bigger picture.

Every time I make a mistake, meaning straying from the current daily goals I've set for myself, I feel a little frustrated.  Not a lot, but enough to get my attention.  I've been posting like crazy in all of my blogs in order to sort things out and redirect my thought processes in a different direction; not really away from the problems but more towards what I can do to help my situation.

It's a lot like slight-of-hand when you're both the magician and audience; there's just some things you can't really hide from yourself no matter how hard you try; the illusion always gives itself away.

Outside of actual magic or parlor tricks my mind continues to actively search for answers.  Currently, even if I'm given good information, accurate information I'm left with more questions than solutions to my problem.  So do I just let go and ride the rails on a runaway train of bad health and confusion?  Or do I keep focusing this somewhat nervous energy towards learning, understanding, and exercising patience where it has little chance to survive?  Do I force my mind to focus on trivial matters or escapist literature or... staring at the television lost in a daze of fiction?  Will those things keep me from overthinking this whole health mess?

See?.... always ending with yet another question.  Well, that just sucks.

Life in Prednisone Hell

You know it's an okay day when my sense of humor is well-intact and functioning.  I will OWN that shit like a boss! lol

I suppose I should give these posts better titles, but then I'm really kind of hyper focused on the side effects of the Pred I'm now required to take.  This is just where I am right now, living with the backdrop of a drug-induced hell.  Trial by fire here, and I'm just going to say I'll ride it out and see how things are on the other side of this.  Tis then, ALL that I do, all that I experience is touched by this new reality of mine.

I have a few blessed moments to myself right now.  In some ways I get a little antsy when I'm alone, which I'm pretty damn sure is the Pred effects as well.  I mean, this stuff can cause mood swings, depression, etc.  Just going to ride it out.  Right?  Right.

Too many cups of coffee, yet not enough to make me stop drinking the stuff today.  I'd been very good at limiting myself till now, but that's gone straight to hell as well.  I mention this because my thinking is a bit scattered at the moment--me'thinks the caffein has addled me brain.

So okay, why the hell am I here typing this entry?  I guess I'm feeling befuddled and lost, dazed and confused, rattled, curious, and scared.  Scared.  Yep.  Of what, I guess the unknown.  Not really knowing where I am in things now because of this whole AIH thing.  It will be under control eventually, even if it does take a couple of years for remission to set in.  Maybe the fear is really based on the fact that Prednisone is now what's in control of things.  And I'm just not liking that one single bit.

I went to bed before 6pm last night.  That should tell you how radically things have changed for me.  I have insomnia, BAD insomnia, and I can tell THIS particular version of it is Pred-induced.  Par for the course, as they say, and I'll have to ride this out too.  Now that I'm titered to 2 doses/day, 20mg/day, maybe some of the sides will take a hike and leave me be.  Wait and watch at this point.

Under the guise of "I've got this!" I spend my day just getting through the day.  That's unsettling to me, you know, to be back there again.  This time, however, it's for a very different reason.  Or reasons.  Either way, here I am, and here I'll be until things are under control.

Wrecking a little health to better a lot of health.  Prednisone does a lot of wrecking, but without it AIH can progress into something ugly and life-threatening.  Fibrosis, cirrhosis, severe portal hypertension, and so on.  Never mind the symptoms and signs of those ugly processes.  So I get to level my life along with the Pred weight gain, the water retention, and pray like hell I can wean off enough SOON to start taking the Pred weight OFF.  Dammit, but I hate this stuff.  It's a necessary evil I have to live with.

I guess in some ways I've just rambled here and said very little.  Probably just where my mind is at the moment, a little chaotic in the throes of the crap.

Did I mention I hate the Pred hunger?  Yeah... there's that.

I'll be back when my mind settles and provides access to the real stuff.....