Because I Can.

It's inevitable, isn't it?  Social networking is like trying to have a picnic beneath a buzzing hornets nest.  We know the situation is precarious, especially when so many have now succumbed to chronic butt-hurt, and yet we persevere, post to our little heart's content, and laugh at the wrath some things inspire from unstable people.  We try to understand, and some will try to edit what they post in order to 'keep down the drama.'  Thing is, the drama is on their side, not ours.  I mean, getting bent out of shape over what someone posts is a lot like being offended by the furniture in your neighbor's house... and saying so.  It's rude, and it's inappropriate.

So why do people do it if it's just going to stir up trouble?  Well, the answer to the question is in the question itself.  Some people are addicted to drama, and you can spot them readily because they'll be the ones complaining constantly, and in their passive/aggressive manner, about everyone else's "drama."  I know you guys have seen this.

I'm always a little amazed, watching them melt-down, lose control, judge others for speaking their minds, all the while trying desperately trying to blur the line between 'victim' and 'bully.'  Know the type I'm talking about?  These are the people who will call you an idiot while claiming they're above such behavior.

It's perplexing.

Here's the thing: Social networking doesn't come with a carte blanche card to attack other people's views, etc.  You have a choice to keep going if you see a post you don't like, and most stable, intelligent people will do just that.  And yes, there are exceptions, such as someone outright attacking, bullying, posting personal or sensitive information about you, etc.  I mean, by all means.. call them out on it if they do that, and be sure to block their sorry asses when you're done.  Nobody likes a bully.

Now, you also have to practice what you preach.  I choose not to comment if I don't like something, and I refrain when possible the urge to behave in passive/aggressive ways.

I personally don't believe we should censor our speech just to make other people more comfortable.  DO know that I'm NOT including bullying in this, because that will NEVER be okay.  Not ever.  But outside of bullying, we can say what we want, given it's within keeping with said SN TOS.

My personal experience in this current political climate has been that the chronically butt-hurt come out in force when I post something that isn't in keeping with their own views.  One person in particular has taken to some very nasty commenting on posts he doesn't agree with, and often it's simply posts in support of who my chosen presidential candidate is.  Now why would anyone have to vomit nastiness on a positive post?  Who knows?  Who cares?  My posts on my page aren't open to bullying and nastiness.  I will either delete your posts or block you.  Enough is enough.  For the record, I've not yet blocked this other person, but that could change quickly after today's nastiness.

When has free speech turned into 'free to bully'?  I don't have the answer to this question either, but maybe it's more a rhetorical reference than anything else.  Either way, some people really don't understand how stubborn I can be when it comes to another trying to control what I do, how I think, how I feel, and so on.  Yeah, I can assure you.. you really don't want to poke the bear like that.

Bullying doesn't work on me, and you'll find quite the opposite response than what you hope for.  But then, I think these types of drama queens actually WANT the drama, which is why they spend SO much time tossing insults.  Why else would they do it if that's the only payoff?

So today this person went on a rant, tossing in character assassination remarks and such, and quite a few at that.  But the main complaint is that he didn't want to see political posts and actually stated that if you're posting more than 2-3 per day that your friends are "Fucking sick of you."  Well, what he thinks was a clever cut down and shaming tactic I see only as a challenge, and one I accepted right off.  Today is going to be a day when the political posts will continue.. all.. day.. long.

I don't give in to bullies, who are really just cowards anyway.  My page, my posts, and anyone who doesn't like it can click the 'unfollow' or 'unfriend' button!  You can't bully me.  You can't censor me.  And you can't control me.

Challenge me, and you may be surprised at my response.  And remember, you can't un-ring that bell.

I also practice what I preach: if I see a post I don't like... I move on.  Having the restraint to NOT react is empowering, because when you do as that other person did today you show weakness, an inability to control your own emotions and behavior.  Why would anyone willingly do that?  There are venues outside of social media to air your grievances if needed.  Hell, I have blogs where I can speak my mind and get things off my chest WITHOUT drawing attention to the person I may be talking about.  Having been at the receiving end of abuse and character assassination I choose to refrain from going down that road if possible.  But I assure you, I'm NOT afraid to stand up for myself; that's a completely different thing altogether anyway.

As they say... haters gonna hate. ;p

Really?

Shakeology is an awesome product, and it tastes really really good.  It replaces a meal, or two if you can spend that much money per month (I replace ONE).  Sounds easy, and it used to be.  But what I have to deal with NOW is that the weakness I have, the weird and excruciating lower back pain (despite the prednisone, no less) actually prevents me from being able to stand and MAKE that shake!  Is this the Myositis part of my current life experience?  Is it something else?  I mean, really?

I have to wonder where this is all leading.

So what's the solution to this?  I've NO idea.  Having to lean my elbows on the counter JUST to be able to stand there at all doesn't exactly allow for making that shake every morning or afternoon.  WTH?  *sigh*

The rest of my diet has changed dramatically due to this as well, and since I can't even stand long enough to make a sandwich.  The unhealthy alternatives, you know... the ones that you can quickly nuke without any preparation, well that's become my way of eating.  Trust me, this is not a good way of eating if you're goals are good/improved health.

I've considered replacing dinner with a shake so T can at least help.  I'm not sure how that will work, but it may be the only solution to the problem at this time.

This weakness stuff is ridiculous....

*ugh*

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?.....

The Invisibility of Being.

Throughout my life I've been pretty thin-skinned, listening to others tell me what I should/shouldn't be, what and how I should think, do, say, dream... developed into an art form for me that damn near reached "Spidey Power" status.  No, seriously.  I would take and wear whatever anyone projected upon me like a shiny pair of Jimmy Choo's.  And trust me when I say that two-sizes too small absolutely made a difference in how I felt and carried myself through life.

Barefoot is better.  Know what happens when you go barefoot the majority of the time?  The soles of your feet get pretty damn tough.  Having grown up poor I had only one pair of shoes (cheap) at a time and wasn't really allowed to wear them outside if I were just playing in the yard, etc.  They had to last until my mom decided we could afford more.  I think I had the toughest feet of anyone I've ever known because of this.  The only thing that really hurt me was if I stepped on glass (which I did a few times, once landing me in the ER to have the glass removed), and when that California asphalt and concrete got hot enough to fry an egg on.  Even so, over time walking barefoot didn't bother me one single bit.

But what about the INSIDE?  Oh, but that was a whole different story altogether.  I couldn't walk my way through through the pain to being 'thick-skinned' and pretty much felt the weight of anything and everything that was said to me.  Criticism became truth, a 'reality' handed to me that I willingly took.  My childhood experiences weren't filled with encouragement or praise nor even helpful criticism.  Indifference and criticism, and many times complete withdrawal of love and affection were the tools used to shape the person I would become.

I was to become the child who survived.

In adulthood, that small child I once was is alive, and though not well, that part of me is AWARE.  There is still a disconnection of who 'that little girl' was and who I am now, and I still see photos of when I was little and feel such pity for 'that little girl.'  Yes, I know it's me, of course.  But the disconnection is still there just the same.  I want SO much to apologize to her and say "I'm sorry I didn't protect you!"

I've accepted this disconnection as a part of who I am, but I don't like it one single bit.  C'est la vie.

I remain thin-skinned, but my reaction to criticism, disrespect, and so forth is very different now.  I've allowed history to repeat itself in relationships I've had, and the reality of this has unprecedented tenure, so it would seem.  It will be with me the rest of my life.  Okay.  I'll just have to work around that when possible, right?

So here I am all grown up and stuff.  I can make decisions, change my mind, and walk away from anyone or anything that threatens my happiness; such are the benefits of being an adult.  Right?  Well, not exactly.  At least not for me.  That subconscious, that inner child, the child I actually WAS at one time so long ago, well.. she has a mind of her own and remembers the pain, the isolation, the indifference, the coldness, the invisibility of being... well, me.

Such memories carry over for the long-haul and map the course of life in often undesirable ways.  But it doesn't always have to be like that.  I can do more to help myself in that respect.  And I do.

On bad days, of which I have far too many these days, that inner child is the one who suffers most.  Sure, I feel the physical pain, and I feel the isolation of my situation and all it invokes (depression, anxiety, etc).  But it's what happens INSIDE that changes my world, my life.  All I can do is anesthetize myself with too much coffee, reading, and way too much television.  My physical body simply refuses to allow much more these days.  That's okay, because eventually the AIH and the 'possible' Myositis, both autoimmune, is driving the bus now, and not even my inner child can rebel against that and affect change.

Sitting here in the quiet, drinking coffee, talking about things I've not talked with a single other human being about...well, but for one therapist for a very short time, I can definitely say I recognize my life as it was, and as it still is; The invisibility of being... me.

Cross-Post Rant Ahead.. "I'm DONE"

Trust me when I say... it's taken me from approximately 7:20am to 10:37am JUST to calm down enough to write.  Waking to indifference each day is grating on my nerves and sucking the life out of my life.  I'm not in the greatest of moods at the moment, and I'm not about to pretend I am.  It's been one HELL of a morning... let's just start there, shall we?

Okay, so all of my life I've believed that the old saying "Anything worth doing is worth doing RIGHT" is a damn good foundation for anyone's life.  Half-Assing ANYTHING reveals a lot about a person.  And by 'half-assing" I mean not putting everything you have into what you're doing.  Not to say your "everything" may not be on the same level every day, but putting in 100% of what you can is all anyone can really ask.  And why not?  Why would anyone do anything less than 100%?  When you take shortcuts you leave someone else to make up the difference in distance you weren't willing to go.

NOTE:  As always, unless I'm writing something aimed at someone in particular... the word "You" is used loosely and not meant to point fingers at anyone here.

My health is bad--I've spoken of this a lot in my blogs.  Dealing with one confirmed AI disease (AIH) and going through the paces of confirming a second means.. I'm NOT in remission.  I won't BE in remission for a very long time (I'm told).  The blood work COULD very well improve, the numbers will improve and possibly quickly, but 'remission' is more than numbers.  I won't go into all of that, but suffice it to say every single day is a battle to get through.  So here I am living with someone who, by nature, does ONLY what he can get away with and not a scintilla more.  What does this mean?  It means I have to take up the slack.  I not only have to do what I need and have to do, but I have to take up the slack from what he only does PART-WAY.

Half-Assers are a HUGE pet peeve of mine!

Look, I realize there will be days, times, and situations where you may have to take a short cut or do what you can in that moment.  But I also know that there are things that HAVE to be done correctly, thoroughly.  I mean, you can only short-cut your way through things until you end up with a completely and totally chaotic mess that SOMEONE ELSE will ultimately have to deal with.  Why the hell would you do this to someone, especially someone you claim to "love"?

This morning, like so many mornings (every morning!) I found myself forcing my way through cleaning up after T.  And I mean, cleaning up as in it takes me some 45-hour JUST to pick up the slack of his half-assed whatever.  Have I spoken to him about this?  Of course I have, and 2 years ago, when it really began, I was very calm, loving, and discussed the matter with him in hopes he would see what he was doing.  I mean, he's a grown up, and I'm not his mom.  He can pick up after himself, because he's no Ward Cleaver and doesn't treat me like Joan.  The family of the 1950's and 1960's are GONE.  Marriage and relationships aren't centered around women being in servitude.

Now, women who are treated with respect, treated kindly, appreciated.. will do almost anything for their guys.  It's how we're wired.  We're wired to be caretakers, caregivers, at least most of us.  However, when taken advantage of we often will begin to back off from all those things we once did easily, eagerly, and happily.  When taken for granted... we don't see any reason to continue giving when there's only taking from the other side.

And please, don't confuse this 'give and take' with material things or money, etc.  Because those things don't bring happiness, not ever.  What I'm talking about here is doing one's part in the relationship without placing the blinders on and thinking it's really just all about the other person doing all the work.

I've been in a relationship where everything was dumped solely on my shoulders.  People who know me, who pay attention, find out quickly that I can't be bought.  You can't buy your way out of unhappiness.  You just can't.  Being poor and happy is FAR FAR superior than being well-off and miserable.  Money can't get rid of unhappiness.. I really can't stress that enough.

Doing your part, that's what it's about.  Not placing necessary pressure or expectations on the other person is what it's about.  Respecting the other person's time is what it's about.  And soooooo much more, or course.  But when it comes to half-assing your way through chores because you know the other person will take up the slack for you... that's a sure-fire way to turn that person off, long-term.  And good damn luck getting them to be turned on again.

Being taken advantage of is not good foreplay.
Being taken for granted is not good foreplay.
Doing and not doing things that make the other person's life more difficult.. is not good foreplay.
Being overtly, blatantly lazy isn't sexy.
Indifference isn't sexy.
Ignoring someone isn't sexy.
Not respecting the other person's space, time, and needs isn't sexy, nor is it good foreplay.
Being mean, hateful, abusive.. isn't sexy, and it makes for LOUSY foreplay.

You treat me like shit, I'm going to shut down.
You abuse me, mentally, verbally, or physically.. and I'm going to shut down and NOT be into you.
Take me for granted and I'll stop doing things for you.

It's taken me years to get to this point, and I've been a welcome mat for a couple of people and won't ever allow myself to do that again.  I don't need anyone THAT much.  If I'm treated badly, eventually I won't feel anything at all for you, and you're going to find out that you really just can't un-ring that bell.

You can't buy me or my love.  I'm not for sale.  If you do something you claim is out of kindness or whatever, and you use it against me later.. you've given your true motive away!  Once I SEE you, what and who you REALLY are, I won't be able to see that 'other' person ever again.  Once you blow it, you blow it.

T is lucky in that there's still about 2% hope here.  This morning was just about the final straw, but I fought and worked my way past it, and I'm telling you it was DIFFICULT!  He knew, too.  He knew the moment I pointed out to him what he'd done.  He tried to backpedal, tried to reassure himself that he'd not blown it VIA me.  But what was done was done, and the disingenuous nature of what he did wasn't lost on me at all, and it broke something inside and change, again, the way I see him and feel about him.  Being disingenuous is exactly like lying, and I'm DONE being okay with men who lie to me, either by omission or right-out.  DONE.

That 2% of me that is still open to his finding a solution and fixing the whole disingenuous thing is stretched very thin.  He's running out of time.

Honesty and respect are MORE important than love.  My last relationship taught me that, opened my eyes to the fact that without those first two things.. LOVE CAN'T EXIST!  Love CANNOT exist in the absence of honesty and respect.

Besides struggling through a VERY PAINFUL morning trying to finish half-assed attempts at whatever, I also had to deal with the tuning me out thing, the thing where he pretends to vaguely respond because he knows he didn't hear a thing I just said.  No matter... I don't repeat myself anymore.  I do let him know, however, that I get that he didn't hear me and that all the begging in the world to repeat myself isn't going to make me do so.  After a year or more of this not listening/tuning me out thing.. I've grown intolerant to it.  I've told him that, fine, if he's that disinterested in what I have to say then I'll simply 'tell someone who gives a shit.'  He doesn't like it, but it's no longer about what HE likes and doesn't like anymore.  I've taken the first step in getting MY life back, replacing the disrespect he shows towards me with my own SELF-RESPECT; something I really should've done a long, long time ago.  Better late than never, I say.

So this morning was NOT a good morning.  But I'm going to spend the remainder of my day taking care of myself, focusing on what I can do to help myself heal, and incorporating those things that will protect me from further harm from anyone, especially from the person I'm living with.  Yes, I still have to work through the damage from the past relationship, but that's already underway and will help with my current situation.

Well, that's where I am today.  It will get better, and I will keep persevering... as long as I can.

This Timeline

After yesterday's major energy crash, today I find myself contemplating the things my mind wants to do that my body won't allow.  I didn't handle yesterday well at all, and I found myself wondering how much is going to get worse before it gets better, and just how am I to ride it out from day to day when even the simplest tasks are becoming glaringly impossible.  Where is this leading, when will it get better, and why can't I see my life's timeline anymore?

So I've ventured into another realm as of yesterday, and that is changing my diet radically.  The Prednisone weight will have to be put to the side at the moment, because I'm now having to deal with changing my diet so as not to be incredibly sick... let's just put it that way.  I'm now having to construct a pretty bland diet in order to stave off the turmoil that seems to have taken over my GI tract.  Yeah, I know.. not pretty.  It is what it is.

Bland chicken and rice, bananas, white toast (HATE white bread, btw), veggies, cooked carrots, etc.. is now going to become the norm until we find out how to get that $1,200 Rx.  We're trying a different route today, one that makes the dosage a little lower (have a copay card we're hoping will work with this dosage change).  Why on earth does this even have to happen?  Ugh.  Obamacare SUCKS and has messed up SO much with insurance.  Anyway, back to the topic at hand...

The bland diet will have to do until I can get that Rx.. which I needed at least a month ago.  The waiting continues....

On another note, I still feel 'dull' today, tired, brain-tired, lethargic... all fun and games when Azathioprine dosage is tripled.  And the fun begins with taking massive precautions to not get a cold or flu or whatever.  This is.. also just the way it is.  Welcome to my 'new normal.'

But that timeline that I used to be able to see, even if a bit blurry, is just gone.  I suppose this means I'm going to be living day to day until I feel a bit more like a human being, and I will continue to take steps in the right direction when I can.l

The exercise bike is partially put together... T doesn't care to use it so it's just at the back of his mind. But when the day comes that it's FINALLY assembled... I can at least begin exercising.  Unless my doctor feels that with active Myositis this is a bad idea.  Either way, even if I can exercise even a little everyday it should only benefit me, right?  And the eating thing... bland diet or not things have to be done differently.   And this is the only way I see my life right now, just getting from one moment to the next, one day to the next, one thing to the next.

...And who the hell knows what's next?  I sure don't.

Dammit.

Autoimmune Hepatitis, Myositis, My Life

One more appointment out of the way.  One more trip to the lab to get more blood work.  More talk of a secondary AI disease (Myositis), and discussion of Paroxysmal Muscle Weakness.  All in a day's work, right?  All joking aside, it's just movement in the same direction, albeit slowly but surely.

Getting from point A to point B is mind-over-matter now.  The excruciating pain in my lower back I'm told isn't electrolyte-related and is part of the "Myositis" issue.  My Hepatologist, if I understand correctly, can't make that diagnosis definitive, as it requires a rheumatologist to do so.  This can be very difficult, however, unless one is lucky enough to find a rheumy doc who is also a D.O.  Now, I won't go into the whole 'what is a D.O.' thing here because it would just take too much time.  What I will say is that I prefer D.O.'s over the average M.D. because their D.O. training means they're trained and take the stance of... looking at the whole person, rather than the parts.  In other words, they look at the big picture.  My GP is a D.O., and every specialist I have to deal with I tried to choose based on whether he/she is a D.O. (such as my cardiologist).

Mind over matter, literally...

I have to WILL myself through every step I take now.  The muscles in my lower back literally LOCK into place the second I stand, preventing walking in a normal way... or sometimes walking at all.  In other words USING those muscles is almost out of the question.  The leg weakness, the arm weakness, I'm told, is also due to the AIH and most likely even more to the myositis.  Myositis is not something anyone wants, trust me, and I'm not sure where it will end.

Geting a definitiv diagnosis isn't really going to be so easy.  AI diseases are complex, and many of them have to be, in part, a diagnosis of exclusion, though not always.  Many autoimmune antibodies aren't found to be present in about 20%-25% of people with AI disease, and the other factors are sometimes hard to catch.  When someone spontaneously goes into remission... that makes it more difficult.  With aldolase levels elevated again, with the problems with the muscles in my back, etc... it could be easier to get a diagnosis.  Not sure.

Eventually, the Aldolase levels could normalize and stay there, though myositis could be rampant.  The reason for this is that Aldolase will decrease as muscle tissue is destroyed, so it's not the most reliable predictor for severity or even presence of the disease.  Where I'm lucky in this is that I'm being treated for Autoimmune Hepatitis, which includes Imuran/Azathioprine... which is used to treat myositis as well.

"You're Aldolase is elevated AGAIN.  And THAT'S while you're on prednisone and Imuran!  Imagine what it would be if you weren't."

He's right, of course.  The Aldolase levels are elevated but still somewhat lower than before treatment.  Maybe we can stop the destruction of muscle before it gets too bad.

So what am I to make of this?  Don't know.  Just waiting for the definitive diagnoses so focus can be shifted solely on getting these things in remission.

Prednisone tapered another 5mg, Imuran from 50mg/day to 150mg/day.

This is where things get risky.  I can't get a cold and need to avoid situations where infection can happen.  With my immune system suppressed to this degree, even a cold can land me in the hospital.  So precautions must be taken, and I have to pick and choose where and when or if I go in public and take precautions accordingly.  I have to stay clear of sick people at all costs.

I can't do a flu shot until I'm off the prednisone, so that will complicate things further.  I SHOULD have gotten a flu shot weeks ago, but I had no idea I would need one that badly.  Lesson learned.

Bottom line today is that I'm forcing myself to sit here at the table, to type, to keep on keeping on without succumbing to the call of the couch.  Yeah, I would like nothing better than to completely veg out on the sofa... or crawl into bed for a long nap.  I have no idea what I'm to give in to.

My next bout of research, though I've done a little preliminary, is to see what I can and cannot do with regards to exercise given that I'm most likely dealing with myositis.  The commercial grade (gym quality) exercise bike arrived yesterday and isn't put all the way together just yet.  No biggie... it will get done, and I need some time to figure stuff out.

OMG... I'm so tired, my muscles ache.  But I think this may be due to the increase in Azathioprine.  Boy... am I in for a rough ride, I think.

Signing off.... for now.....

Family--Beating My Head Against the Wall

To say I come from a dysfunctional family is putting it mildly.  Further back than my own memory reaches my siblings have hated me.  No, really, I'm not making this up or being dramatic.  I don't talk about this much because it brings a lot of sadness and discomfort, anger and resentment rushing to the surface.  It's a long story, really, and one with gaps and holes and far-reaching voids where many memories have vanished.  It would be oh so much easier had I been adopted, because I know virtually nothing about my family tree, for all the asking I've done over the years, and my parents are both deceased with my having absolutely NO idea where I came from, who my ancestors are, or what my connection is to any of them, if at all.

I was a "Mistake," according to my mother.  Now, my relationship and experience with my mom is a story in and of itself, and honestly... I could write a novel here about that.  But I'm not going to.  Let's just say my mom was disconnected by the time I was born, old enough to be my grandmother, and about as unplugged as a parent could get.  It was easier to micromanage and control everything to a damaging degree, rather than create experiences that may have given me a chance and coming out on the other side with less 'issues.'  Yes, of course I have issues, and in a way it was my mom's only legacy.

How is it that I could know little of nothing, if anything, about anyone in my family tree?  Well, that's easy--when you don't answer questions, share nothing, and ensure that not a single photo, letter, information, etc. gets passed down to you... well, you can't ask a dead person questions.  Point blank, not pretty, but absolute truth just the same.

Everything from health/medical information was shared primarily with ONE of the 6 children, and I wasn't the one who got the information.  My eldest sister was my mother's confidant, her go-to gal, and there was an almost too-close relationship between my mom and my oldest sister (old enough to be my mom).  I spent my entire life on the outside, looking in, and it was that way until my mom passed away (over 20 years ago now).

One sister and I shared a dad, and my other siblings share a father form my mom's 1st and only marriage.  Yep, my other sister and I were illegitimate.  I could really care less about that, to tell you the truth.  My dad was out of the picture when I was 18 months old, and my mother really never spoke of him or his family except for some really scary things, very dark and scary things.  Now, it shouldn't surprise anyone that if you scare a kid like that, they're most likely not ever going to ask too many questions.  This was the case with me.

The siblings who had a different dad hate me.  Just the truth.  I was even told that one reason they despised me was that, because we were very poor, they often didn't get as much milk (the example used by one brother and sister) because when it came down to the wire... "The baby" (me) needed it more than they did.  I can't speak for what happened when I was a baby.  I can't apologize for something that I didn't do on purpose.  Yet that resentment carried right into adulthood for my 3 brothers and one sister.  BTW, I don't really think of them as brothers and sisters because they've not treated me as such throughout my life.  What memories I have of life with them.. isn't good.

I was born very late, with my mom being in her early 40's when she had me.  All my siblings (but for one) was grown and gone and with kids of their own, so I pretty much grew up like an only child from about age 10.. when one of my sisters married and moved out (she was 16).  We lived in a 3 bedroom house that was eventually condemned, and my mother (a hoarder) used all 3 bedrooms as her hoarding rooms.  My sister, the one I share a dad with, had her own room, lots of 'stuff,' decorated walls, record player, records, clothes, and a bike.  I didn't have enough toys to even have a toy box, so even in this respect I would find myself living an entirely different life than my sister... and everyone else, actually.

My mom was absent, indifferent, cold most of the time...and even cruel.  Skipping over more details than will fit here, I will say that my childhood was very, very odd, and the damage done has proven to be long-lasting.  Still, I spent my life longing for a family, a REAL family.  Now, coming from a family with 3 brothers and 2 sisters you would think that a strange thing for me to say.  Aunts, uncles, cousins... really had nothing to do with me, but for one cousin who, I guess, simply took pity on me.  I felt the hostility from them all growing up and didn't understand any of it at all.  I felt it, saw it, heard it, and experienced that hostility until we moved away from California.  We moved to Colorado because my oldest brother wanted my mom to move there so she could babysit while he and my SIL could work.  I was in 8th grade when we moved, and my life didn't get better at all.

Longing for a real family... even to this day....

I would eventually move away from the state of Colorado.  My kids and I, to make a long story short as possible, ended up here in the south along the Gulf Coast, where we settled into that strange place (strange to us because we weren't from there) and would end up calling the south "Home."  It's the only place that ever felt like home to me.  I'm still in the south, but a little further north by a few short hours.  But back to "Family"....

When my mom passed, naturally my eldest sister got everything.  Very important items my mom was holding for me until I could send for them were divided amongst my brothers and sisters and nephews... or just tossed out as garbage.  They did this QUICKLY after my mother died, the day they found out, using the excuse that they were sure that since she was on disability, got a veteran's widow pension, and on Medicare, etc... that the 'government' was going to come in and take her stuff.  Yes, LUDICROUS, but that's the excuse they used.  And when I arrived for her funeral I wasn't even allowed to so much as have a photo of hers.  My eldest sister 'allowed' me to take ONE photo to have it photocopied.  My mom had boxes and boxes of photos, btw.

Few actually had anything to say to me at the funeral, or after.  It was the same shit, different day.. only worse.  A few years later I'd tried once again to make some kind of connection with them, but it ended in a total disaster.  I finally came to my senses and realized that I was the only one putting in any effort and that it just simply wasn't worth it.  I basically told my oldest brother and his bitchy wife to piss off.  And yes, it felt great and was LONG overdue.

In the present....

I know pretty much nothing of my family history, my family tree.  My last living grandparent died when I was 2 weeks old, and everyone else was so much older than me that no one really had anything to do with me.  My mom wasn't really forthcoming with names, histories, etc., though she did incorporate some names and such in a few fun stories she would tell from time to time.  But as a little child I really had no idea if she were making the stuff up/telling fairytales, or if the information was actually true.  And after my mom's death... the information about grandparents and such were simply not given to me, even if I asked.  Photos, etc.... all given to my sister, who claimed some neighbor stole them, were lost.  My brothers, etc. chose badly when they decided to give my sister everything.  One person said they thought my sister pawned or sold the framed antique photos of grandparents etc for money.  Sadly, it sounds exactly like something she would do.

The cruelty extends into adulthood....

When one of my brothers passed away a few years ago I was told about this AFTER the funeral had taken place, and... I was told on Facebook by a distant cousin.  She apparently looked for me on Facebook with ONE purpose in mind, and that was to send me a message that read.. "B**** passed away last week.  Thought you'd like to know."  I asked "How/why?" which lead to her replaying in the same short, blunt fashion. She then disappeared and didn't say a word ever again.  I'd written back a couple of times.. with no response.  I'd written my nephew as well, and have been ignored.  And this nephew I grew up with and was very close to most of our lives.  He's only 2 1/2 years younger than I am.

Cruelty was their favorite weapon, and continues to be so.


The family tree...

As someone who feels completely disconnected from 'family' or blood ties, history... it only stands to reason that I would, eventually, WANT to know something about my own family history.  SOMETHING.  ANYTHING.  So when I decided to look into www.ancestry.com I felt like I was taking a step in the right direction.  Maybe this site could help me put the broken pieces together in such a way that I would at least see my connection within the bloodline.

What I've done...

I created an account at www.ancestry.com over a year ago, but since I wasn't really willing to invest any money into getting a full account, I've only spent the smallest bit of time there.  But that changed for me about a week ago when I saw a commercial online for Ancestry and a DNA test they offered that shows where your bloodline is from, at least in percentages.  A lot of folks have jumped on board for this.  Now, one cool thing about the DNA test and having a real account (which I don't yet) is that you can set your family tree to allow links between matches for DNA, region, etc.  It's a lot more complicated than that, and they have a video that explains it all, but it's a really neat tool and a good place to start.  But what about for someone like me?....

DNA results may be the only thing I really get out of this, and that's okay.  It's something, isn't it?  It would be nice to know for sure what ethnicities are involved in my family tree, even if I don't have any family history to see how the pieces fit.  I sent my kit off today and, from what I understand, it will take about a week for the results to get uploaded online.  Knowing it's not going to give me complete picture of my family tree... I'm still okay, and I'm fairly patient where that's concerned.

So what's my freaking point here?

My point is this: If you have information about family history (names, places, etc) please share them with your kids.  Don't leave them in the dark to spend the rest of their lives wondering who they really are (history wise), where they're from, what their history is, etc.  It's really not a good or easy thing to live with when you have no idea about those things.  Don't do that to your kids, seriously.

My desire to know more about my family history/ancestry runs deeper than the hurt from the disconnection from my actual 'family members.'  I rarely use the word 'family' when speaking about them.  They're blood relatives to me, but nothing more.

I have to wonder if I'm beating my head against the wall trying to piece together a family tree I know nothing about.  Names, birth dates, etc. are required to even do searches or make connections.  What little information I have really just stops at my mom, and my dad I have only a name and birth date.  It's really like hitting a brick wall.  But is it worth it, all of this effort?  I don't know.

I really just don't know.  The one thing I DO know is that I'm left with the question: Will I ever fully understand myself in connection to history and ancestry?

*shrugs*

A very interesting read.  I've read about this stuff before...

http://www.eyedoctorguide.com/Eye-Color/hazel-eyes-eye-color.html

Healing

Having some Saturday alone time is a rare treat for me, and I call it a 'treat' because the weekend vibe as it is in my life right now is different than it used to be.  Being stuck indoors all day, every day, because of health issues is less than optimal for a happy, health life, and definitely not too good for a healthy body and mind.  Still, I make the best of what each day gives me, even on those days when I'm brought to my knees by symptoms and issues I can do nothing about.  Alone time is the time when I decompress, and it's an absolute necessity.

The minutes are ticking away as I type this, meaning the minutes I have in the peaceful quiet.  So why am I spending this time typing in my blogs and doing mindless things like surfing the internet?  Because I CHOOSE to.  It's really the point, isn't it, to make our free time what we want.  Of course it's the point.

One more cup of coffee.  A few more minutes of peaceful stillness and quiet knowing it will change in roughly 45 minutes to an hour.  I'll take what I can get and use it for whatever I want.

My world is colored in shades of white, green, blue, and cheap, durable tile; something many hospitals and clinics have in common.  So sitting in my own space where I'm surrounded entirely by NON-medical-related decor, sights, sounds, and smells, I can improvise throughout the day depending on what is often the unpredictability of living--at least in my life anyway.  I can predict nothing, so I expect nothing, and I allow everything.  On the surface this sounds risky, but I promise you it's not.

I long to have the strength and stamina, to be without pain long enough to continue to create my environment in such a way that it promotes healing.  REAL healing.  Not the medicated type of healing, but real healing.  While I know and appreciate what the medications are doing to save my life, even to promote a better quality of life (leading to), I'm well aware of the things that have yet to be addressed.  Back pain is now the front and center of my days and nights and all I can do is ride it out until someone discovers what's causing it.  Exercising patience is difficult in the face of chronic illness and pain, but it's necessary.

While the overall chronic pain began to cease with the addition of prednisone, something else is revealing itself at the same time.  This, like everything, happens for a reason, so I understand and accept that this is a message of some kind, the pain being a warning sign that something is still amiss.   Healing will come when the answers come.  I just need someone to ask the questions now.

What's left of my quiet morning will end soon.  T will come home and things will change, though it doesn't really have to be for the worst.  If he would just tune-in, plug-in, and open his eyes... I think things could go a bit smoother than they have.  I can't open his eyes or make him listen or to be aware or anything at all.  It's up to him, ultimately, to plug-in or not.  I have to focus on wellness, healing, and regaining my strength, vitality, and even my passion for life, for being alive.  Unless you've lived with chronic pain, with a chronic illness (even if you didn't know you had it for a long time), you probably wouldn't understand any of this.

But I understand all too well.

I'm glad my morning was quiet and still.  I'm grateful to have had that today, even if for just a few hours.  I'll relinquish that quiet to the busy life of living with another human being, because I have to, because it's necessary, and because I should.  I won't say I 'want to' because what I really want is to not have to relinquish peace, happiness, tranquility.  No one should have to relinquish the better part of being, should they?  I don't believe so.  But I will today, and I will tomorrow, and I will next week and so on until T takes the time and initiative to work through some things that are completely destroying having a peaceful life together.

Do I long for the days when I lived alone?  Do I miss the imperfect peace I once had as a single person?  Yes.  I absolutely do.  It's FAR easier to live alone than with someone.  But easy isn't always best, now is it?

I want best, not easy, but at the same time I also believe BOTH can exist simultaneously.

Reaching the bottom of the coffee cup as the second half of the day looms ahead.  So much to do, so very much to do.  I'll miss the peace I've had the first half of my day.  Tomorrow my exercise bike will be delivered, and the office/exercise room needs attending to make ready for that delivery.

I really will miss the peacefulness of this morning.  I really, really will.

Trump Supporter Kambree destroys National Review

I'm posting this across my blogs, because this woman speaks for SO many of us.  The original video she made is a lot longer than this, but this gets to the key points directly.  She speaks for SO many of us....

First 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

Reality and the Mask of Acceptance

When I first created this blog I had a couple of intentions in mind: 1) To talk about diet, exercise, health and healing, and even sex.  2) To journal while navigating my way to better health.  Well, to say things were derailed rather quickly would be an understatement, but it doesn't mean I've abandoned my original purpose here.  While the theme still exists, so do those things that came in to completely throw me off-course.  Hey, that's part of the process, and the discussion doesn't really change all that much.

Blunt is good most of the time.  But let's face it, in polite society and circumstance requiring a bit more tact the conversation WILL change somewhat.  But THIS isn't polite society, and PC isn't the name of the game here.  While I have pulled back hugely when posting here, that's going to come to an end before long, because I'm simply too sick and tired to sugar-coat anything or leave out those details I really need to add to the conversation.

I know my reality.  I've talked about my reality.  I'm dealing with a chronic illness that gives little clues as to how it's going to progress in my life.  AIH isn't anything to take lightly, and I don't intend to.  Having said that, I'm adding that THIS is my new reality, one which I have to live with, deal with, and include in my blogs.  This isn't to say I'm giving in to the disease, btw.

Acceptance is a funny thing.  Anyone who's had to work their way to acceptance of any situation or circumstance knows that accepting what is can be a real bitch.  It's no different for me.  But acceptance is often something we WEAR, rather than something we have or do or feel.  It's true!  Think about it.  For example, the stages of grief END with acceptance, but what people forget is that the stages of grieving ISN'T linear but CIRCULAR.  We circle back and forth between those stages and no one can say just how long it will take before reaching acceptance---or even if you'll stay there once you arrive at that point.

It's just another mask we wear from time to time.  Acceptance isn't a dead-end destination and never will be.  For those who've been reading a while, you know I've gone back and forth with that whole acceptance thing quite a bit and am still going through it now.

Okay, I'm really tired and am going to talk myself into shutting up for the rest of the day... maybe. lol

Another Day, Another...

When will the dialogue ever change?  It WILL change, the question is WHEN?  I'm fighting against the 24/7 prednisone hunger, the relentless bloat, water retention, swelling.. and dammit... no matter what I eat or don't eat, nothing actually changes.  This drug has taken the wheel and is recklessly steering things headlong into the abyss.

I'm going to make this as short as possible, but I vowed to make entries here so I can see where I was and when and what was going on at the time.  Weight loss isn't going to happen in the midst of weight gain.  Some people are very fortunate to not be on prednisone long enough, or have a dosage high enough, to cause too much damage.  But for those of us who have to endure this, the hell of having to choose between what happens WITHOUT treatment for AIH and WITH isn't really a choice at all, unless you have a death wish.  UNtreated AIH has an average 5 yr survival rate in many cases, and less than 8 when it comes to terms of cirrhosis developing if it's absent at the time of diagnosis.  Those are ugly odds.  So we take our medipoison and hunker down for a long and rough ride to remission.

Diet--meal planning--cooking--eating--and my body's reaction to any of those differ from one day to the next.  And by the end of the day my body is NOT my friend.  It's another day in prednisone hell and I'm not handling this well for the most part.

I can't define the excruciating back pain that came on board almost two weeks ago.  I've felt it before, and it went away quickly when I received 2 IV iron infusions for anemia.  So is the anemia back?  Why won't any of my doctors test for ferritin again to check this?  SOMETHING is causing severe back pain that even prednisone can't touch!  That's kind of a big deal since prednisone is often prescribed FOR back pain!  What gives?  I may end up having to call the hematologist to see if I can get re-tested based on symptoms.  It's a simple test done right in his office, and though the results take about 3 days to come back.. at least I'll know if low ferritin and/or iron in my blood is to blame.  Because honestly, this sucks worse than the AIH symptoms.

In the meantime, I choose what I eat based on how long or IF I'm able to stand there and cook, make a sandwich, etc.  Yeah, it's THAT severe.

It's just another day in my life on planet earth...

Random Thoughts at 3am

I had to make that meme.  I suppose it's just that one goofy part of me (sense of humor) that refuses to buckle under the health issues.  Yeah, I'm just ninja like that.

ANYHOO....Insomnia is a fickle bedfellow these days.  Incredibly unpredictable, I never quite know what it is I'm facing when I get into bed each night.  There's something triggering me to wake up when I go to bed, but I've yet to pinpoint exactly what that is.  Even nodding off on the sofa prior to going to bed doesn't guarantee I'll sleep once I get there, and in fact... it's almost a given now that I'm going to be waiting up, tossing and turning, until the wee hours of the night.  And what does this do besides keep me tired and exhausted?  For one, I get strange dreams, ones I really could've done without.  No, not nightmares... just dreams.  But still...

So it's 2am, 3am.. and stupid, random thoughts pop into my brain, which triggers more thinking, thinking, thinking... blah blah blah.  Damn.  Seriously.  WTH?  Most of it isn't even worth thinking about, I promise.

Okay, so falling back asleep this morning in hopes of getting about 5 hours I had a dream, and one that puzzles the crap out of me.  Well, I suppose most dreams don't make sense, right?  They're usually random babbling and broken intel of things we are either not dealing with, dealing with poorly, or unaware that we need to deal, you know, with those things.  But what about those dreams that aren't as chaotic and confusing?  What about the dreams that leave us thinking.. "Wow. That was so REAL!"  What about THOSE dreams?  You know the kind I'm talking about.

If your dream makes sense, what's the message?  That's the big question, isn't it?

I'm not sure what to make of my dream.  The content, which I'm not wanting to talk about, I think I understand, but my REACTION to it is yet another thing entirely.  It made me sad, seeing what I saw in the dream, though the actual thing happening wasn't a sad thing at all.  So.. wth gives?

Sorry to be vague about the dream itself, but some things are just TOO revealing of my own thoughts and feelings, feelings I'd rather keep to myself.  I'm trusting my instincts on this.  I may actually talk about this stuff in detail at some point, but I prefer to wait until I'm ready.  Hope you guys understand.

The other crazy thing that's happened today, post-dream, is that I feel a little anxious about my future.  It's like I'm being forced to assess what I want and how I plan to go about getting what I want, in terms of my future, happiness, health, and so on.  I don't have the luxury of being on auto-pilot, so introspection and continually assessing where I am and where I'm heading is really important.  T is more of an auto-pilot type, and it's not always easy for someone like me who's trying to take the wheel of my own life to be around someone who's just, well, letting life happen to him.  Not to say that his life is bad, because he's really chill and content most of the time.  I like to see where I'm heading, though, so laying back and riding the current isn't going to work for me right now.  Not sure it will ever work, to tell you the truth.

I wish I knew what my subconscious was trying to tell me.  I have a guess, but I don't LIKE that guess so am keeping an open mind and hoping I'm full of it. ;p

That's a lot of writing for someone who's as tired as I am.  Sheesh....

Well THAT was an epic FAIL!

Look, you won't hear me say I'm perfect.  I'm not even willing to say I'm striving to be perfect.  Why on earth would ANYONE set such impossible goals for themselves?  Not me.  Not now.  Not ever.  The only thing I can promise myself, or anyone, is to do the very best I can.  Having said that, so far... I've kind of sucked at it.  Dammit.

If I mention prednisone, it's for a reason.  Anyone who's had to take high doses for any real length of time (more than a few days) understands PERFECTLY about what it will do to a body, even to someone's thinking and personality.  It's a steroid, so yeah, it can do those things, whack out your entire body.  Corticosteroid or not, it's STILL a steroid.  And this particular steroid is a complete BITCH.

Swelling is a huge and very common side effect.  It's also a concern in that it can raise BP to an alarming degree.  That same swelling (edema) can also make it hard to breathe or sit or stand or lay down comfortably.  And that is only ONE of the nasty side-effects.  The next biggie... APPETITE increase!

Now, as I've mentioned before, the mechanics of this are annoying and bewildering.  And puzzling!  On one hand your taste buds end up dulled, leaving foods that you once liked tasting like clay.  Nothing tastes good.  But your appetite is through the roof 24/7 and doesn't ever take a damn break.  Well, unless you get the nausea... but even then that gnawing hunger is still there, you're just now turned off by food and can't imagine WHY you want to eat when everything sounds down right disgusting.  What the hell?

Fine.  So most of us who end up in this place, the place where I find myself now, have tried so many things to make it so anything we eat won't be a hit against our health.  Thing is, there doesn't seem to be an easy answer on how to handle this where it actually works in keeping the water weight, or actual weight gain at bay.  Younger people, teens and 20s often have an easier time of this as their metabolisms are still pretty fired up.  And if you're suffering from the crushing fatigue that is one of the hallmarks of AI diseases, then you end up not being able to exercise, or only able to exercise so little that it hardly does any good.

Well, right now I realize I made mistakes in what I choose to snack on during the day.  The usual "Small meals, more frequently, to lose weight" idea DOES NOT WORK WHEN YOU'RE ON PREDNISONE!  Know this!  And if you're over 30... beware, because you're fixing to find out just how much slower your metabolism is from when you were in your 20s.  Is it guaranteed?.. this weight gain?  No.  Everyone is different.  But don't be shocked if you find yourself swelling up and retaining Lake Michigan.

I just keep keeping on and riding this thing out.  From all I read this can all be fixed once off prednisone, given that one's adrenals haven't completely shut down.  THAT... is another story altogether.

Sheesh.  I need to go lay down....

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!

The Dangers of Being Honest

Honesty has become a vulnerability.  People who speak their minds honesty are often faced with ridicule and contempt by those who have opposing views. I believe most of us get this and have experienced that ridicule first-hand.  While a valuable lesson, that ridicule and backlash, while it reminds us how we should choose our words carefully, we must always remember that honesty is STILL the best policy, and that lying by omission... is STILL lying.

A friend who reads all my blogs, and I mean every entry (bless her heart), sent me a message and said, "I don't know how you do it. Aren't you scared of haters bashing you?"  Well, no.. I'm not.  I refuse to allow haters and bullies to dictate how I think, behave, react or don't react to any given situation.  I mean, once you give away your power it's really hard to get it back.  It's best not to give your power to another to begin with.

I've relinquished my power to haters and bullies in my past.  My entire life, up until about 3 years ago, I learned to suppress my feelings, to bury anger deep, to hide the foundations of any feelings I had.  Not to say I wasn't emotional, because BOY was I ever.  I wore my emotions on my sleeve for the entire world to see.  But when it came down to recognizing for more than a second what created those emotions, and when it came down to standing up for myself, that's where everything fell apart, and it did so because I was taught early on that having those emotions.. was a bad thing.

I no longer think that, and because I no longer think that I FEEL more intensely those emotions I used to keep in check to the point of denial.  It's been a liberating process, being able to access feelings like that.  I don't have to apologize to anyone for having those feelings, and I reserve apologies now for when I HANDLE those feelings badly; thankfully this is seldom an issue.  So when someone writes me and is worried because I allowed the emotions and thoughts etc to flow freely on the pages here, or in my other blogs, I DO take into consideration what they're saying, but I also take into consideration that I've come a very long way to not only reach my feelings and access them more fully than before, but that it's MORE than OKAY to express them.

There is a danger to being honest.  There's a danger in speaking freely at times.  There's a risk that you won't please one person or another person, etc.  Not everyone is going to like what I'm saying.  But so what?  There will be those who DO, and it's with those people that the unspoken camaraderie is expressed and felt.  What I say, what I express, actually has helped people, and it's certainly helped me.  So I've no intention of changing this, just so everyone here is clear on where I stand.

I will accept the dangers of honesty and continue to be honest, sometimes bluntly, and I will take into consideration the edges honesty has by definition.  I'm not out to hurt anyone, and this is why I name NO names here as to whom I'm speaking about.. IF I'm speaking about someone else.  It occurs to me that having to say this means I'm still aware, very aware, of the risks I take.  But it doesn't matter.. I'm not here to write fiction or make things look better or worse than they actually are.

I'm going to be myself, haters and bullies be-damned.  No one should give up pieces of themselves for others to devour, and that's exactly what you do when you censor your words, thoughts, and feelings in a place or forum where you're there to speak your mind.  People can choose to read or not read, listen or not listen.  Actions are a choice.

So to my friend, though we've spoken about this at length--I hear you.  And I'm okay.  I'm okay with what any hater or bully thinks about me, because I don't answer to them.  And.. you shouldn't either.

Oh but will you?

Undeniably, the mind, the spirit, and the body are ALL interconnected.  And if that sounds like a 'duh' statement, that's because it is.  Yet it still needs to be said for the sake of clarity, for me to point out the obvious that even I can see.  In such a chaotic and jumbled mess, being that of any relationship, the power this has over one's actual physical well-being is also undeniable, and yet sometimes I often look the other way and ignore the connections when I can't do anything about them at the time.  A little on the destructive side when you think about it, right?  Yet.. I'm human and prone to very human faults and so on.

Well okay, so do something about it, right?

Easier said than done.  Not impossible.  Just not easy.

My reaction to stress, anxiety, tension, etc. is just as human as it gets.  Some days are better than others, and most days I just go with it and trust that there's a reason I'm reacting to my circumstances in ways that aren't always best for me.  For the good of the better, the other person, the situation, and in complete line with seeking harmony I allow DISharmony to enter into my own personal space.  That's the cost, that's the price I pay, for wanting someone else to have the peace I rarely have myself.

And the echoes of impending broken promises do little to serve me.

Trust is a funny thing.  I trust the appearance of honesty and am often disappointed.  No wonder since I don't do much in the way of trying to understand if what I think I'm hearing or seeing is genuine.  I've done this in the past, extended trust where I shouldn't have.  But don't we all do this?  Either way, you'd think I'd learn, right?

I have learned in some ways but choose to allow that unrelenting romantic in me to believe that, like magic, all will be well and shining and happy and new.  Silly.  Absolutely silly.  Yet there it is in my current and past history.  Can one really polish a relationship like a silver spoon?  Maybe, but like that alluring and fickle metal... it will tarnish again if not tended to.

I don't want to spend the rest of my life polishing shit.  I mean, does that even make any sense?  No, it doesn't.  So why do I continue to do this?  Because I'm unhappy.  That's why.  Not that this is a permanent state, mind you, because all of us have the power to change our circumstances and reaction to them.  I keep telling myself that I can and will, and that little voice inside continues to ask... "Oh but will you?"

*shrugs*

As long as I don't give up, as long as I'm absolutely clear on what it is I need to be happy, healthy, and thrive... I'm not entirely lost to regaining the control I need in my life to make it different, better, mine.  I don't want to live someone else's life.  Do you?  Does anyone really?

Hello World...

I honestly didn't think I'd have anything left in me to post here today.  I did a bit of unloading in the other blogs and found that I really needed more caffein to carry on; I'm good with that.  With my cup of steamy nummieness sitting next to me I'm going to try and make some sense out of my out-of-control swinging appetite and the mess it threatens to put me in.

Prednisone.  I've now been on it roughly a month, still at 30mg at the moment and will be tapering down on Sunday.  Monday is when my blood work comes back and I know if it's safe to proceed to the next upward dosage of Azathioprine.  I will be going, I believe, from my current 50mg/day to 100mg/day.  The goal is 150mg/day.  Getting there will be interesting with all the side effects that come on at first and with each increase in dosage.  And then there's the high caution I'm in right now with regards to anything flu, cold or infectious anything at all.  My immune system is on overdrive, so suppressing it is critical.  With Prednisone AND Azathioprine on board my immune system is winding down to a steep low, which means I have to be extremely cautious with who I'm around.  I can't risk being sick.

My biggest worry--and I will get back to the diet/nutrition thing in a moment--is T.  He's not careful with using antibacterials on his hands, and yes.. he washes his hands but not to the extent he needs to now that he's living with someone who's immune system is purposely being suppressed.  He doesn't get it, and he forgets that he has consistently brought home colds and flu every year.  Regardless of his getting a flu shot, he gets the flu and brings it home.. every.. single.. year.  Colds as well.  He gets over the colds and flu fairly quickly, but as of right now if I'M to get a cold or the flu... it could end VERY badly, such as in pneumonia.

I feel like I have children at home again, always reminding him to please wash his hands when in public, or after going out in public, and especially if he's around someone who's sick.  I see him not doing this, and I remind him... constantly.  Why can't he remember himself?  Ugh.  smh.  I have to stop talking about this because it's extremely upsetting.

At any rate, the nausea that began yesterday continues, though not as bad.  It's a gross feeling in my stomach and back of the throat, and my taste buds are completely off at the moment.  I suppose this could be worked in my favor, considering.  But I'm not sure due to the fact that it seems my blood sugar drops, or does something, off and on during the day, prompting me to have a snack of some kind.

No shakeology again today either.  I love the taste of those shakes, especially since I had a tsp of orange extract to the chocolate, or the vanilla... it just tastes awesome.  But that nudge of caution is there just the same, to be careful of what I take in.  I have almond milk now, so I can do away with the dairy worry.  But still...

I'm no closer to any answers than I was a week ago, and my goals are clearly seen but out of reach due to T dragging his feet on important decisions requiring ACTUAL ACTION on his part.  Like the recumbent exercise bike for the back office.  The bike is chosen, he just has to order it.  And he's a procrastinator unlike any procrastinator I've EVER met.  OMG.. you've no idea.

So this morning I remind him about the exercise bike.  What does he say in response?... "I will have to measure it to see if it will fit in there."  HUH?  Seriously?  We spent last weekend moving a bookshelf from the office to the huge dining room, and a big doll cabinet (for my art) into my art room, emptying some boxes and moving the file cabinet, etc. to make room for that bike.  They don't come in different sizes, not when they're the high-quality ones for commercial use.  They come in ONE size, and knowing that size we made room for it.  So what's the deal?... Well, that one is easy to figure out...

You see, T isn't really much into anything if it's more than 4 or 5 inches outside his own skin.  He sees things from his perspective only, and he makes decisions based on HIS wants and needs and no one else's.  We were supposed to have ordered this bike MONTHS prior to moving, more than a year ago actually.  Now, it's a good thing that we didn't because it would've been a total bitch to move, but this is representative of to what degree he will put something off unless it only benefits HIM personally.

I'm told to listen to my body and don't push things too much, but I'm also told to try and incorporate some exercise into my life each and every day if possible, or as many times a week as possible.  T and I agreed that, for now, joining a gym would be far more costly in the long run, and it won't be nearly as effective because there will be days when I'm simply not up to driving to the gym and back. We discussed and agreed on an exercise bike for here at home, something even he could use.  Now he's hedging again as my health remains in the balance.

I'm really at a loss as to what to do.  He doesn't really keep me informed as to what's going on, decisions he makes, etc., which makes me feel like an outsider.  And.. I'm getting off-track here a bit, I know.  But his decisions are impacting my health, not HIS.

So while the wild switches between terrible nausea and raging prednisone hunger (which happens very little if at all the last couple of days), I'm left with only exercise to balance things out, and I need that bike to do it.  My stamina for standing at this time is at rock bottom...

What to do, what to do?  Wait, I guess, and see if he decides to ACT on anything.

I'm not holding my breath....

Almond Milk, Shakeology, and DAMMIT I'm sick!

Okay, so not like with a cold or flu, because not only would that make actual SENSE, but it could land me in the hospital with pneumonia; happens to those on immunosuppressants.  But today I'm dealing with nausea.  Intense nausea.  I'm down a couple of cups of my usual coffee quota, and I'm here to tell you that the idea of drinking or eating anything at all is trying to make me yack.  No really.  Not joking.

I'm going to try, though, you know... having another coffee.  Because I'm just hardcore like that.  Or ninja.  I'll take either.

No shakeology today again.  I didn't want to risk another bout of what happened yesterday as my GI tract is NOT happy about something.  I have purchased some almond milk in order to nix the diary out of my diet again.  Maybe that's wreaking havoc or playing with fire in some ways, so no real reason to continue poking the bear in that respect.  Listening to my body has become a skill I've almost mastered.  Kind of a have-to skill-set I must say.  At least in my case.

Anemia:  You guys may remember I had to deal with that and had two IV iron infusions a few months ago to remedy the situation.  Prior to the diagnosis I was dealing with horrendous back pain, body pain, nausea, loss of appetite, and several other issues.  Now, much of that continued past the IV iron infusions as they were the result of the Autoimmune Hepatitis I have and didn't know I had then. But my backache went away, and some of the nausea.  Not all, but it took the edge off.  So with the return of a lot of the symptoms I've been dealing with, and considering I now have a bleeding GI tract, maybe my ferritin has plummeted.  I hope not, because I re-introduced meat, of all things, back into my diet to help heal the anemia.  Heme iron is superior for the body and doesn't require any food combinations or supplements.  Once I get my health back on track I'm going back to vegetarian/vegan.  It's a moral choice, and also.. I really don't like meat that much.

This nausea is driving me crazy.  I have the shakes, sick to my stomach, nausea feeling in the back of my throat, and I have a sore tongue.  Oh, and lets not forget that despite the prednisone I'm still on... my appetite left the building like Elvis today.  Good grief, I wish my body would make up its mind.

So what to do?  Most likely will have to call my hematologist and request ferritin testing again, just to be sure.  Just in case.

I'm tired of blood tests, to tell you the truth.  I don't mind the needle, etc.  I just really hate having to go to the hospital or doctor's office to have it done so often.

Sheesh.

My stomach... ugh.

Well Crap...

Honestly, I wasn't going to make another entry today, but some major symptoms of perhaps an overlapping condition reared it's head in a HUGE way, prompting me to call my liver doc again.  I'm sure the guy is about tired of hearing from me about now.  He knew there were two situations, both of which is being treated as a separate entity since that's what we believe they are.  Treatment for the second GI issue seemed to be working since my first dose Monday night, but today... it all changed in a VERY dramatic way.  Trust me when I say, I'm going to spare you the details for your own good.  Let's just label it "IBS" and go right the hell on past that and pretend we don't have to actually think about what that is. ;)

Either way, what drugs I'm on.. two should be helping with this, and the other (Imuran/Azathioprine) can actually cause the problem.  I'm aware that dietary intake can have an effect on things, so I'm nixing, yet again, ALL dairy from my diet.  Or most dairy.  I'm not sure this is the problem yet since I've not seen an actual pattern here.  And yes, I had to come off my vegan/vegetarian diet a few months ago due to iron-deficiency anemia (Not diet-related).  Healing took precedence over my ethical reasons to abstain from eating animal products.  That being said, I'm not sure how long this is going to last in light of the recent upswing in certain IBS-like symptoms.

Initially I was to be one two different medications related to these symptoms, as my hepatologist believes there is a large possibility I'm dealing with a gut bacterial overgrowth.  SEXY, huh?  Well, thanks to my insurance and FREAKING OBAMACARE changes, my insurance company refuses to pay for the $1,200.00-$1,500.00 medication.  That's just ONE medication.  Why can't I take something cheaper?... because I'm on a blood thinner and most of the medications in that class can cause serious bleeding events when taken with a blood thinner.  So I've been waiting for a month now to find a way to get the medication I need, as the symptoms continue to grow worse, and more intense.

The reality is that this IBS-like condition, and I'm calling it "IBS-like" because my doctor still believes it's bacterial in nature and not a disease process.  Once treatment can be started then we will see if things resolve.  But when the hell will I get to actually TAKE the medications?  THAT is an ongoing problem.  On an aside, I did finally resolve my problem with my blood thinner going from a $25.00 2015 cost to a $361.00 2016 cost via insurance, and because my insurance refuses to pay any portion.  THANKS OBAMACARE!  UGH.  I found a Rx copay card application, finally, on the drug manufacturer's web site, signed up, and now my medication cost's a whopping $10.00 per month!!  I'm very happy about this and relieved as well.

So the secondary issues that comes with the IBS-like symptoms involves a lot of bleeding.  Yeah, yeah.. I know this topic is gross, but it's one a lot of people have to deal with, and if anything at all I say here helps even ONE person, then I'm going to talk about it.  So anyway, the bleeding issue is worse because of the "attack" I had today.  And oh boy, I really wasn't expecting this attack to be as severe as it was.  I'm sitting here at the moment pretty much scared to eat anything.  Yeah, even the accelerated hunger from the prednisone can't even break through that fear, and for good reason.

The nurse I spoke with about this new event hasn't called back, but my Hepatologist is a very popular doctor and is extremely busy.  They always get back with me, but it may take a little time.  They may be contacting my insurance again re pre-approval for that drug I desperately need to take, or possibly take care of this problem.  Is it related to the AIH?  I've no idea.  But it's being handled as a separate entity.  I don't care how it's handled as long as it's handled and I can get it resolved.

Of all the things I despise, I honestly have to say that Barrack Obama has all but destroyed our once fairly decent health care system.  Pledging to make health care/insurance available to ALL of us, what he ACTUALLY DID was FORCE people to buy insurance they can't afford or face severe tax penalties for not complying.  Furthermore, it forced the hands of health care providers via insurance changes to make up for the new system.  What an F'ing disaster, and one that has far-reaching repercussions for anyone who had insurance to begin with.  Not only that, but I still couldn't get or afford health insurance even when I wasn't insured.

In the meantime I'm dealing with debilitating symptoms and blood loss.  Seriously, any wound that bleeds is a problem when you're on a blood thinner.

....And don't get me started on the excruciating lower back pain... I won't even venture a guess as to what's causing that.

Crap.

Crap.  Crap.  Crap.  Crap.  Crap.