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....

Screams behind the silence.

Be proper.  Be respectful.  Don't say anything.  Allow it to hurt.  Walk away.  Seek solace within.  Shut out the world.  Be careful.  Bury it deep within.  Try and forget.  Sedation in sleep.  Don't talk.  Don't FEEL anything and it won't hurt.

No matter what I tell myself the truth behind the feelings won't give me respite.  I've refused to allow myself the freedom of addressing what "I" need in the past and felt the sting of days and weeks and years lost, years where I was put on pause and left to wither inside.  Right now I can't say I'm doing well in that department again.  This time... I feel myself, who I am, once again collapsing beneath it all.

I try to remain as silent as possible, as still as I can bring myself to be.  That silence, though no one understands, is louder than anything they could actually handle.

WTF kind of life is this anyway?  None.  None at all.

The Similarities of Day to Day Life.

Or shall we call it "A life of perpetual sameness"?  Either way, I'm going to make damn sure I change this.  I have to.

I've posted enough here for you guys to know where I am at the moment.  Dealing with communication and respect issues from T, issues that make themselves known every day and every night without fail.  You also know by now that my tolerance for this is extremely thin, verging on non-existent.  Notwithstanding innocent goof and human blunders, somewhere in the chaos one has to actually SEE the damage being done.  "I" see the damage because I'm a recipient of most of it, but T sits quietly on the river "Denial" and refuses to move.  Ok.  Whatever.

He doesn't like my bluntness and doesn't want me to say aloud the truth that threatens not only to completely destroy this relationship, but the truth that's destroying my peace of mind, health, and happiness.  He's in blissful ignorance, so I don't have any choice other than to say exactly what's on my mind.

When I'm trying to open a discussion, when I need to point out behaviors in someone that TRULY need addressing, I use non-combative phrases.  I speak of how I feel, what the harmful behavior is, but I don't point fingers, name-call, label, etc., because that approach causes damage as well.  I know how to communicate, as long as people allow me to communicate.

Repeatedly disrespecting me is a huge deal and would be for pretty much anyone.  Not allowing anyone to disrespect me was a lesson only recently learned, so I'm still a little awkward with it and finding my balance and strength when approaching the subject.  I'm getting there.  Now, in the process I've become fairly blunt when I've taken all I can, and all PC is out the window.  I speak my mind now while doing my best to preserve the other person's (in this case T) self-esteem.  I've no interest in becoming what I most despise so won't allow myself to go there.

T believes that when I point out what he does that hurts, offends, and disrespects me.. that it's a form of disrespect and that I shouldn't say anything at all.  But I assure you, that approach NEVER works and is, in fact, quite harmful to relationships and the individuals.  If I shove down my feelings, ignore the disrespect, and take the punches in silence... I will eventually resent that person, and that person right now is T.  No matter how I try to explain this--he doesn't get it and shows no indication of trying to understand or stop the disrespectful behavior.

Again, as I've said many times before, I'm not trying to make T out as a bad guy or to demonize him. He's NOT a bad guy--he's just blind to the things he does and doesn't do that greatly and adversely affect me in so many ways.  I hang in there for the obvious reasons, and I do so because I hold hope very close, hope that he'll see what he's doing so it can be stopped.

I may be a bit foolish for relying on hope this way given my past experiences and hope-filled failures.  But there's no reason NOT to hope.  In fact, hope is the great buffer of all things, isn't it?  Life tends to slip apart when hope is lost.

Damage control: There's been a lot of this with most being unsuccessful.  And I'm no stranger to damage control given past relationships that left me holding the weight of fixing everything.  One person CANNOT fix a relationship, nor can one person break it.  If a relationship is going bad, guaranteed there are TWO people at fault, even if it's the behavior of one and the acceptance of that behavior by the other.  It takes two people to break a relationship and two to repair it; an absolute truth.

Sometimes there are victims, yes, but 'most' victims are willing.  Meaning, when you have a way out of a bad situation and don't get on board with preparing things, and if you stay and suffer the damaging consequences.. then you've willingly participated in that damage.

As for me, I was a willing victim.  I played the martyr in love more times than I like to admit.  My role in a past relationship which did a LOT of damage to my self-esteem, body, etc. I take full responsibility for.  I remained in a bad situation, and though I believed that he and I could fix things I refused to see and acknowledge (for far too long) that the weight of that burden was planted fully on me.  I should've left at the first sign of serious problems.

I should have bailed when the relationship began changing the way I saw myself, how I thought of myself, when it began to depress me and fill my entire world with anxiety.  I should have been my own best friend and stood up for ME.  Instead, I did everything I possibly could to change into the distorted version he wished me to become.  It doesn't take a genius to understand that my acceptance of abuses, be they emotional or physical, would nearly destroy me as a person; I get it NOW, but I didn't get it THEN, not until it was too late and the damage was done.

I had to forgive myself more than the other person, because it was ME who let myself down.  I didn't have my own back, and I allowed everything till nearly the end.  It wasn't until I had a TIA and ended up in the hospital (very shortly after the last blow up) did I realize to what degree I'd been beaten up inside and how it had shattered me.

In the hospital the doctors asked about my level of stress, had I been dealing with major life changes such as a death in the family, financial hardship, and/or a breakup.  That was the first time the lightbulb went on and I began to introspect as I lay in that hospital bed with nothing but the hum of the heater to interfere with what came to me.  The realization was harsh, brazen, and shattering in its truth.  I had to get out of the relationship; I had to let go; and I had to do it to save my life.

This wasn't a comfortable awareness when it came blazing out of the deep recesses in which unpleasant things go to smolder.  But there was nothing I could do, really, but allow it into the light and face what it was, what I'd always known but refused to acknowledge.

So the burning question for most people at this point, after hearing/reading about my experience, the question everyone I knew at the time had is: Why the hell did I stay so long?  I stayed because I was in love with him.  Isn't that why any of us stay in bad or toxic relationships, because of our feelings and our sometimes misguided hopes that he/she will change?

I wouldn't find out until much later, until it was far too late and the damage was taking over my life and destroying happiness, that the person I fell in love with didn't really exist.  If you've read my blogs for a while you've heard me say this, and that's because the realization that I fell in love with a lie is profound and one I struggle with today for obvious reasons: You can't say goodbye to someone who doesn't exist.

The mask slipped and I discovered the truth beneath.

To this day everything about me struggles to reconcile who I thought I loved with who I was actually dealing with.

I believe that this problem of irreconcilable truths, for me, is fanning the flames of what's happening in the current relationship.  While I knew this was a possibility there wasn't any reasonable way to prepare for the experience itself.  On one hand being protective is necessary, but on the other hand.. always being poised in defense isn't a good idea either.

This emotional struggle could end with closure; something I will never have.  I can't say goodbye to someone who never existed, now can I?

Yeah... and therein lies the biggest problem of all.  This fight, this struggle permeates day to day life.  T's disrespect, whether purposeful or accidental permeates day to day life.  Health problems worsen and take over day to day life.  There seems to be no end to this....