Home.

One thing I've known for certain for pretty much all of my life is that when I'm ill, I long for home.  When I was little I knew where that place was, and despite its terrible flaws it was still home.  As an adult I was surprised to find that I no longer knew exactly where home was.  So I would spend the majority of my adult life longing for a place that quite possibly, for me anyway, doesn't exist.  I've never been able to reconcile this; not physically, and certainly not emotionally.

The closest I've come to being "Home" once moving out of my mom's house at 18 is Mobile, AL.  I had a tiny little apartment, and though not every moment there was perfect, it felt safe, and it felt like a warn welcome every time I walked through the door--no matter how good or bad things were.  It was a safe place for me to be myself, where I could decompress, where I could dream, wish, hope and feel alive.  This is not the case where I am now.  Not even close.

How did I get here?  I got here the same way I got into every bad situation in my life; By pure blind trust.  It's a flaw of mine and one that's gotten me into more trouble than I can tell you.  I give people the benefit of the doubt, take them on their word, and actually believe what they say.  Well, to a point anyway.  The thing is, that 'point' in which I pivot and see the error of my ways is usually far too late to avoid any damage to my life, and to me.

I'll probably always be this way, a far too trusting person.  I'm okay with that, I guess.  But I really wish I were better at assessing and discerning the heart and motives of people BEFORE I get involved.  We all have our flaws, I suppose.

As I wait for the sluggish process of diagnosis beyond the AIH, I'm left far too vulnerable for my liking.  There are days I can't walk well, verging on not at all, and days where lifting my arms to look at my phone is almost too much.  The weakness grows more each day and the doctors I need to see are weeks out of reach since I'll be a new patient.  The waiting is going to end me in the ER at some point, I'm afraid.  But the worst of this is being this sick and living in a place where I know absolutely no one at all.

T only helps around here bare minimum, and as the chores, etc. pile up... I long for the simplicity of the life I had in Mobile, where I didn't have to clean up after another human who refuses to do what's necessary to not live in a dirty, cluttered house.  I can't live this way, so I struggle to pick up the slack.  And I'll tell you, the slack is far far more than what T actually does.

How the hell did he survive on his own?

I have to somehow find my way home--wherever that is.  I know I can keep struggling a little bit to find my way here, to at least hang in there until I'm better---or at least better enough to survive, to move, to do something to help myself.  At this rate I don't know if I can work, which scares that crap out of me.  Disability requires a definite diagnosis, and at this time I don't have one that explains fully how I'm continuing to weaken and become more and more sick.  What can I do if even typing an entry like this makes me shaky and nauseated with weakness?

I want to be well again, to feel good again, to have energy again.  I want to be in a position where I can find my way back home again.

Home.  I just want to be... home.

MIA

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....

Coffee & Willpower; neither are working.

I don't think I have the energy to explain, though I've tried on my other blogs.  Can't say I've been much of a success in just being alive today.  Been up a little over an hour and already need to go back to bed.  WTH is this anyway?  Answers, no answers, partial answers, and yet no solution yet.

Phaeleh Lament

The words won't come today, simply stuck in my head in a nice little jumble of "WTF?"  Yeah, I'm really there today.  Not much to say, don't feel well (putting it mildly), and have all but sat here at the computer longer than I can actually, physically handle.  A little over an hour.  Isn't that something? *sigh*

Handle this, handle that, forget what it does to your soul.

I told myself that I could handle this today.  I promised myself I would at least try.  And I did, try.  I can't say I'm handling things well at all, because.. to be truthful.. I'm not.  But I'm trying.  Do I really believe I'm strong enough to get past this whatever-it-is?  Now that's the million dollar question, isn't it?

Forget it.  The whole idea of just "enduring" life is ridiculous and not something anyone should try on purpose.  I don't think anyone does, you know, do that on purpose.  Most of us are catapulted directly at the bullseye of defeat by forces we can't possibly overcome much less stop.  Some give in.  Some give up.  Some are caught between the two.  And me.. I've no freaking idea where I am in this mess.  I just know I don't like it here.  And why should anyone have to be where their soul, spirit fades beneath the gray?

Know when to get out while your spirit still has its wings.

Twilight--my favorite time of day.

It's a small part of the day and one you may miss if you blink.  Stay awake.  Just stay awake.

Almost the entirety of my escape processes include music, where the fabric of reality and the fantasy of reclaiming a life I once had clash in, sometimes, startling and colorful ways.  I don't delude myself into thinking that I don't know what really is or isn't; who cares?

Falling asleep listening to carefully constructed playlist is the only oasis I know.  While some songs grant me enough peace to fall asleep others wake me, and it's the message rushing to the forefront of those that bring me out of my slumber that are the most unsettling, the most telling.  I sometimes think of those moments as my subconscious crying out for help, that the sleeping soul and the wakeful spirit will be one again.

Creativity sleeps.  Dreams are too distant to remember.  Hope sits quietly beside me, distant and unmoved.  Memories are places my conscious mind tries to take up residence when I'm unable to sleep and surrender to what smothers my soul.  The abyss is real, and the truth looks down and recognizes its reflection in the darkness.  It's not as grim as it appears on the surface.

I no longer try to make my conscious and subconscious shake hands and call a truce.  The battle is a quiet one below the surface....

Tell me how did you think that?

Are you with us, darling?
Cause you treat it like a game
And you mess yourself up
It's such a shame, such a shame
You got issues, darling
Cause you waste it all away
You're full of yourself
It's all in vain, all in vain

And it breaks my heart
And it breaks my heart...

(Oh, oh)
Cause every time is the last time
(Oh, oh)
And I'm kicking myself just trying to be understanding
(Oh, oh)
Tell me how did you think that?
(Oh)
You're leaving me waiting and acting like I'm so demanding
(Oh, oh)

Cause it's never your fault
When you're keeping your knees clean
And sorry's below you
It's always me, always me

You told me you could change your ways
You collecting scars but you look away
You promised me you could make it better
You told me it won't be the same
But your eyes stay shut and my screams fall faint
I only wanted to make it better
Make it better
Make you better